MDS RAEB-2 and now severe Myelofibrosis

[PattiDean]

Dean has been on Dacogen for almost a year, and was doing well, needed transfusions now and then and his WBC was always terrible, but we were able to get out to the movies, dinner and week end getaways. In May his counts began to fall even more and not recover as the weeks went on. He became extremely weak and short of breathe.

The end of May Dean had his last treatment of Dacogen. He was suppose to have his usual cycle (five days every four weeks) the end of June, but all his counts were very low, so no Dacogen. His oncologist postponed treatment for a week. The following week, beginning of July, Dean's counts were still very low, so the oncologist said no Dacogen, but ordered a BMB.

Last Friday Dean had to receive transfusions of blood and platelets. Yesterday we received the first results of his BMB, his blasts are 15%, they had gone down to 5% when he began Dacogen.

Now in addition to MDS, the biopsy shows Dean has severe Myelofibrosis. Dean is being referred to Dr. List at Moffitt, as soon as he can get an appointment. We are lucky to be living so close to the center.

Dean has been a trooper, so much braver than I could be, but last night he began to cry and told me how afraid he is. It was so hard to see him like this. I know in my heart it doesn't look good, but I am trying to keep giving Dean hope. We are alone, no siblings or children, not having a family to turn to is so hard.

[Al's Wife]

Patti,
So sorry to hear this latest news. Try to stay strong. We will be praying for you and Dean. We saw Dr. Komrojki at Moffitt last year and really liked him. Hoping for better news for Dean. Keep the faith.

[MagicBob]

Dean has been on Dacogen for almost a year, and was doing well, needed transfusions now and then and his WBC was always terrible, but we were able to get out to the movies, dinner and week end getaways. In May his counts began to fall even more and not recover as the weeks went on. He became extremely weak and short of breathe.

The end of May Dean had his last treatment of Dacogen. He was suppose to have his usual cycle (five days every four weeks) the end of June, but all his counts were very low, so no Dacogen. His oncologist postponed treatment for a week. The following week, beginning of July, Dean's counts were still very low, so the oncologist said no Dacogen, but ordered a BMB.

Last Friday Dean had to receive transfusions of blood and platelets. Yesterday we received the first results of his BMB, his blasts are 15%, they had gone down to 5% when he began Dacogen.

Now in addition to MDS, the biopsy shows Dean has severe Myelofibrosis. Dean is being referred to Dr. List at Moffitt, as soon as he can get an appointment. We are lucky to be living so close to the center.

Dean has been a trooper, so much braver than I could be, but last night he began to cry and told me how afraid he is. It was so hard to see him like this. I know in my heart it doesn't look good, but I am trying to keep giving Dean hope. We are alone, no siblings or children, not having a family to turn to is so hard.

Patti, my wife and I are with you guys, and hopefully your appointment with Dr. Alan List will happen soon. I am sure he will have some type of medication or therapies to treat Myelofibrosis.

We can't replace siblings or children, however we are here as your MDS family, and will continue to pray for you both that God gives you the Hope and Strength to face each day.
MagicBob (Dru and Bob)

[PattiDean]

Patti, my wife and I are with you guys, and hopefully your appointment with Dr. Alan List will happen soon. I am sure he will have some type of medication or therapies to treat Myelofibrosis.

We can't replace siblings or children, however we are here as your MDS family, and will continue to pray for you both that God gives you the Hope and Strength to face each day.
MagicBob (Dru and Bob)

Thank you Bob and Dru,

Sometimes this seems like such a lonely road to travel, thankfully these forums make it seem less so with the support and caring of everyone posting.

Did you have your BMB Bob? When will you know the results?

I don't know if you saw a previous reply I had written to you, but you mentioned that you had lived in The Villages, Dean and I also lived there. We were in the Village of Duval.

Thank you for your prayers and encouragement, they do give us strength, and we are trying to keep having hope.

We are waiting to hear from Moffitt, hopefully it will be soon. Waiting is so very hard.

Hugs, love, faith, hope and prayers to you and Dru!

[billyb]

Patti we are praying or you and Dean, thats the problem with Decitabine, it does a great job of keeping the blasts at bay, but it usually keeps your counts suppressed also, we have the same problem, I dont like this disease to begin with, and I get even more irritated when folks like ya'll are going thru a lot.... and then more gets added on to it. Its important when we are at the crossroads we have a clear head when makeing decisions about treatment, Tina and myself reasearch our options. Moffitt is a great place, hopefully they can come up with a couple different options of low intensity treatment for ya'll.....Praying for Dean and yourself....Billy and Tina

[PattiDean]

Patti we are praying or you and Dean, thats the problem with Decitabine, it does a great job of keeping the blasts at bay, but it usually keeps your counts suppressed also, we have the same problem, I dont like this disease to begin with, and I get even more irritated when folks like ya'll are going thru a lot.... and then more gets added on to it. Its important when we are at the crossroads we have a clear head when makeing decisions about treatment, Tina and myself reasearch our options. Moffitt is a great place, hopefully they can come up with a couple different options of low intensity treatment for ya'll.....Praying for Dean and yourself....Billy and Tina

Thank you Billy for your prayers!

You and Tina have been through so much, and are so young. Dean has had a long life, some health issues (kidney cancer, heart disease), but he always bounced back, I use to call him the Energizer Bunny. We are retired and were enjoying these years after working so very hard, we would joke about traveling until we were in wheelchairs, never knowing what the future had in store.

Dean doesn't want to leave me, he knows I will be alone. He never complains about everything he is going through, but he does cry in those moments when he feels afraid. We know so many people are going through so much more, and we try to be thankful for everything we have been given, but it is still so very scary.

Thank you for your kind post, thoughts and prayers.

Love and hugs to you and Tina. We will keep you in our thoughts and prayers.

[MagicBob]

Thank you Bob and Dru,

Sometimes this seems like such a lonely road to travel, thankfully these forums make it seem less so with the support and caring of everyone posting.

Did you have your BMB Bob? When will you know the results?

I don't know if you saw a previous reply I had written to you, but you mentioned that you had lived in The Villages, Dean and I also lived there. We were in the Village of Duval.

Thank you for your prayers and encouragement, they do give us strength, and we are trying to keep having hope.

We are waiting to hear from Moffitt, hopefully it will be soon. Waiting is so very hard.

Hugs, love, faith, hope and prayers to you and Dru!

Pattie, I had the BMB last Friday (7/19/13) and should receive partial results this Friday.......can't wait, yet I am afraid of the results.

Platelet transfusion today and Red Blood transfusion at 8 am tomorrow. What a social calendar, with ANC at 0.3, I don't dare mingle in public.

We lived in the Village of Hacienda, Spanish Springs for three years and we thoroughly enjoyed it and hated to leave. It was while living there that I was diagnosed with MDS and in 2011 we move back to Pa. to be near our daughters and their families.

Did Moffitt give you an idea as to when Dr. List would see Dean? The reason I ask is that when I tried to see him, they told me it would be way out into the future and suggested Dr. Komrokji, and it was a short wait. He is a great MDS Specialist; should you decide to see him, send me an email at: drubob63@verizon.net and I will furnish appointment information.

Likewise - Hugs, love, faith, hope and prayers to you and Dean

Dru and Bob

[slip up 2]

PattiDean.....so very sorry you are facing another hurdle.....when my husband's spleen became enlarged with the myelofibrosis....we did radiation and it did shrink the spleen and he was more comfortable...it was done 3X per week....as you know this is not a unique diagnosis along with MDS.....there is a test for the JAK2 Gene as well as a new drug JAKAFI...am not sure if it is used when there is a combination of the 2 diseases....
Also Patti....even some that do have family, they can cause more stress than comfort....
Kate

[PattiDean]

PattiDean.....so very sorry you are facing another hurdle.....when my husband's spleen became enlarged with the myelofibrosis....we did radiation and it did shrink the spleen and he was more comfortable...it was done 3X per week....as you know this is not a unique diagnosis along with MDS.....there is a test for the JAK2 Gene as well as a new drug JAKAFI...am not sure if it is used when there is a combination of the 2 diseases....
Also Patti....even some that do have family, they can cause more stress than comfort....
Kate


Thank you Kate. We have only known about the myelofibrosis since Monday. For now Dean's spleen seems to be fine. Dean's oncologist wants him to go to Moffitt for a consultation, since Dean's doctor says he is not sure where to go from here. We are still waiting to hear from Moffitt, they are suppose to call to schedule an appointment, but nothing yet.

Dean has labs this afternoon, and we are going to say something to the nurse when we are at the office. Waiting is so hard. We do know that the oncologist was going to have Dean tested for the gene, I am not sure if that will be today when they draw blood. He didn't tell us how they test for the gene, only that Dean was going to be tested.

Do you or anyone else know if it is common for an MDS patient to also get myelofibrosis.

Thank you Kate!

Hugs, love, faith, hope and prayers, Patti

[slip up 2]

PattiDean.....I think around 30/50%......Birgitta might know better tan I, am sure she will answer....I am moving to-day back to my home town....the Dr Al had at Sunnybrook in Toronto was Dr Rena Buckstein.....the speen might expand as the blood & plts accumulate there....and does become painful....just be really extra careful of infections & thrush....

kate

[Birgitta-A]

Hi Patti,
You know I have seen different figures for the frequency of myelofibrosis in MDS patients - 20 to 50%.

I have had very severe myelofibrosis since dx 2006 - in fact the first year my dx was Myelofibrosis though my speen was OK. I have had 6 BMB:s - it has always been impossible to aspirate due to the fibrosis.

I am JAK2 negative as most MDS patients and 50% of the Myelofibrosis patients.

As far as I understand myelofibrosis in MDS patients is a symptom that can decrease with effective treatment for the disease but all my BMB:s show the same picture though I responded very well to Thalidomide and was free from txs during more that 2 years.

I think Dean's blast cells are a greater problem than the myelofibrosis. Try to not worry about this new symptom. We hope you will get an appointment in Moffitt soon!
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006, positive results with thalidomide + Prednisone 2010-2013. Now trying Revlimid + Prednisone.

[PattiDean]

Thank you Kate and Birgitta.

This afternoon Dean went for his bi weekly labs, we were told he doesn't have the JAK2 mutation. Is that good or bad?

We also received a call from Moffitt. Dean has an appointment this Tuesday with Dr. Lancet.

Dean is not receiving any treatment, his last Dacogen cycle was the end of May, nothing since then. He has received three weekly injections of Procrit this month, and 2 units of PRBC and 6 units of platelets on Friday. Monday we get the final results of his BMB, the chromosome report. When Dean found out he had MDS last July 16 of 20 chromosomes were abnormal. While on Dacogen his last BMB showed there were no abnormalities.

For now, Dean's spleen is fine, but he is extremely weak and short of breath.

Today his blood counts were:

WBC 1.9
ANC 0.5
RBC 2.97
Hgb 9.7
PLT 21

Greatly improved since last week.

I didn't realize how many MDS patients may develop Myelofibrosis. We are hoping that there are options for Dean, we wants to keep on fighting.

Thank you so much Kate and Birgitta for answering my questions, your kindness and support. We are so afraid since finding out the results of the lastest BMB.

Hugs, love, faith, hope and prayers. Patti and Dean

[DanL]

Patti,

It is nice to see Dean's numbers rebound.

The JAK2 mutation is not really considered good or bad, especially in the presence of already identified MDS. If the JAK2 mutation were present, it may confirm Myelofibrosis. As Birgitta noted, many MDS patients have marrow fibrosis (scarring), including myself, and it is basically the result of your marrow having to work really hard to keep up, and may have to do with an overproduction of bad platelets (ironically).

If Dean had the JAK2 mutation, he may have been eligible to take one of the newer myelofibrosis drugs like Ruxotlinib, which helps with MF and has some effectiveness in reducing spleen size for myelofibrosis. I don't think it has been tested too much in overlap syndromes where the line between MF and MDS is blurred. These drugs can really do a number on platelets is some of the concern.

[PattiDean]

Patti,

It is nice to see Dean's numbers rebound.

The JAK2 mutation is not really considered good or bad, especially in the presence of already identified MDS. If the JAK2 mutation were present, it may confirm Myelofibrosis. As Birgitta noted, many MDS patients have marrow fibrosis (scarring), including myself, and it is basically the result of your marrow having to work really hard to keep up, and may have to do with an overproduction of bad platelets (ironically).

If Dean had the JAK2 mutation, he may have been eligible to take one of the newer myelofibrosis drugs like Ruxotlinib, which helps with MF and has some effectiveness in reducing spleen size for myelofibrosis. I don't think it has been tested too much in overlap syndromes where the line between MF and MDS is blurred. These drugs can really do a number on platelets is some of the concern.


Thank you so much Dan for a very easy to understand explanation of Myelofibrosis and MDS.

We have an appointment at Moffitt in Tampa on Tuesday, anxious to find out what they will tell us. We will be seeing Dr. Lancet. Not sure why Dean's oncologist in Clearwater suggested we go there. We are hoping there are still options left for Dean.

On Monday, before our appointment with Moffitt, Dean will receive the final results of his BMB, the chromosome report. Is there anything we should be asking his doctor about the BMB or things we should be concerned about with the results.

Dean's platelets are low, although better than last week, but his poor arms look like I beat him, so many dark bruises everywhere. Today he is extremely tired and having trouble breathing, he is sitting his in recliner. He doesn't even want to eat, keeps telling me he doesn't have an appetite, but he is drinking two Ensures a day.

Thank you again Dan! A few years ago Dean and I stayed in Estes Park, Colorado, and then drove down to Colorado Springs to do some sightseeing in the area. What a beautiful state.

Hugs, love, faith, hope and prayers.......Patti

[Birgitta-A]

Hi Patti,
Very positive with the counts and the appointment with Moffitt!

Hopefully Dean will try to eat and drink something. Here is info from the Mayo clinic about nutrition: http://www.mayoclinic.com/health/cancer/HQ01134

I am sure you will get the important info about the BMB from your doctor.
Kind regards
Birgitta-A

[PattiDean]

Hi Patti,
Very positive with the counts and the appointment with Moffitt!

Hopefully Dean will try to eat and drink something. Here is info from the Mayo clinic about nutrition: http://www.mayoclinic.com/health/cancer/HQ01134

I am sure you will get the important info about the BMB from your doctor.
Kind regards
Birgitta-A

Thank you Birgitta!

I am trying so hard to find things that Dean would like. Even the nurse in the oncologist's office talks to Dean about the importance of eating, but he says he just doesn't have an appetite.

He will eat a little here and there, this afternoon he ate a quarter of a grilled cheese sandwich, he told me he had a craving for it. He is so thin now, less than 160 lbs, and he is 6 feet tall. He used to weigh 180 lbs.

I will keep trying.

Thank you again Birgitta!

Patti

[Cheryl C]

Thinking of you, Patti and Dean. You've certainly been through the mill lately. I pray that Dean will regain his appetite.

[PattiDean]

Thinking of you, Patti and Dean. You've certainly been through the mill lately. I pray that Dean will regain his appetite.

Thank you Cheryl for your prayers. The oncologist has put Dean on Magace, to help his appetite, and it seems to be helping, Dean is eating a little more. :)

[Sally C]

Dear Dean,
In reading the recent posts by Patti, I believe today is your birthday. I know that God has already blessed you with an angel named Patti. I want to wish you all of God's Blessings on your birthday and in the future. I pray that you will have many more.
God Bless and Happy Birthday.
Sally

[PattiDean]

Dear Dean,
In reading the recent posts by Patti, I believe today is your birthday. I know that God has already blessed you with an angel named Patti. I want to wish you all of God's Blessings on your birthday and in the future. I pray that you will have many more.
God Bless and Happy Birthday.
Sally


Hi Sally,

Dean's birthday is February 1, but that is okay, celebrating two birthdays a year is awesome!!!!!

Thank you for a very special post Sally! You are our angel! :-)


Lots and lots of love and hugs always,

Patti and Dean

[Sally C]

Well Patti,
I got it right that Dean's birthday is on the 1st day of the month anyway. We just drove to Houston due to a serious illness in Don's family - arrived yesterday.
Am suffering from car lag and being in a different time zone - 1 hr.difference :) - and I'm blonde - what can I say. I was getting ready to wish MagicBob Happy Birthday today - being the 2nd. But of course - his is in Feb. too. I missed both birthdays in Feb. so better late than never? Sounds good anyway. At least you all know I was thinking about you!
Prayers, blessings, love, hugs and hope being sent to you, Dean, MagicBob and all who are posting on the forums.
God Bless,
Sally

[PattiDean]

Well Patti,
I got it right that Dean's birthday is on the 1st day of the month anyway. We just drove to Houston due to a serious illness in Don's family - arrived yesterday.
Am suffering from car lag and being in a different time zone - 1 hr.difference :) - and I'm blonde - what can I say. I was getting ready to wish MagicBob Happy Birthday today - being the 2nd. But of course - his is in Feb. too. I missed both birthdays in Feb. so better late than never? Sounds good anyway. At least you all know I was thinking about you!
Prayers, blessings, love, hugs and hope being sent to you, Dean, MagicBob and all who are posting on the forums.
God Bless,
Sally




Thoughts and prayers for you and Don and his family.

That is okay getting the birthdays mixed up. I am a blonde also, so I understand! :-) Hey, maybe you started something. Two birthdays in one year! :-)

Lots of love, hugs, faith, hope and prayers always,

Patti and Dean

[Susan L]

Lost previous post. I have a question - I have gone from MDS RAEB been thru ATG tx - 2 yrs ago had Dacogen and Vidaza - neither worked. Developed rheumatoid - tried Rituxan - did not work. Had BMB on 7/19 and now hear partial results that peripheral blood showed 18% blasts - bone marrow show 10-14% blasts. Just confused on the difference between peripheral and bone marrow count of blasts. Going to give in and go for a bone marrow transplant at Northside Hosp in Atlanta. I have no family and my age is 58. Just need some advise I guess. thank you

[Birgitta-A]

Hi Susan,
Very interesting with your positive response to ATG!

It is common that peripheral blood and bone marrow show different blast counts. We should not have any blast cells at all in blood and less than 5% in our bone marrow.

The young immature blood cells (blast cells) should not leave the bone marrow until they have matured.

As you know it is not a positive sign that you have so much blast cells both in blood and bone marrow. It is common that the number of blast cells can be different in different parts of the bone marrow.

Hope you will find a good donor for the SCT!
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Positive result with Thalidomide + Prednisone 2010- Feb 2013. Now trying Revlimid + Prednisone.

[bebop]

I was going to mention for the fibrosis I know someone that was on thalomide(sp)

[Susan L]

Hi Susan,
Very interesting with your positive response to ATG!

Hi - went to the doctor yesterday - he told me I also have Fibrosis of my bone marrow at grade 3 which he said they grade 0 to 3. They are making an appt at Northside Bone Marrow transplant center to see what options I can have. Hoping for the best as I have no family so I dont know if an auto. stem cell transplant would be an option. Any comments welcome as I am lost right now.

[PattiDean]

Hi - went to the doctor yesterday - he told me I also have Fibrosis of my bone marrow at grade 3 which he said they grade 0 to 3. They are making an appt at Northside Bone Marrow transplant center to see what options I can have. Hoping for the best as I have no family so I dont know if an auto. stem cell transplant would be an option. Any comments welcome as I am lost right now.


Oh Susan, we are so sorry to hear that you also now have Myelofibrosis. Like you, they told Dean he had grade 3. Dean and I have each other, but no family, it isn't easy when you are dealing with this terrible disease. Many people on this forum have become like our family, and we are so thankful for them.

Hoping you can receive information from our supportive and knowledgeable forum members regarding the stem cell transplant option. Wish Dean and I were able to do more for you.

Sending you lots and lots of love and hugs, along with our thoughts and prayers,

Patti and Dean

[sbk007]

Hi - went to the doctor yesterday - he told me I also have Fibrosis of my bone marrow at grade 3 which he said they grade 0 to 3. They are making an appt at Northside Bone Marrow transplant center to see what options I can have. Hoping for the best as I have no family so I dont know if an auto. stem cell transplant would be an option. Any comments welcome as I am lost right now.

I can relate, as I'm in the same boat. No family, no friends close by, etc. & they want me to get an SCT. Yet a typical example of the misconception that everyone has family and friends to support them thru a transplant is right smack on the bethematch website. If you read "Caregiver" which is a prerequisite to qualify for the transplant, its assumed it will be a family or some huge network of friends and family, and neighbors. There's no "If you don't have family, neighbors and friends" then do this pathway. Your not alone. Good Luck, and I hope it all works out for you.

[Neil Cuadra]

I can relate, as I'm in the same boat. No family, no friends close by, etc. & they want me to get an SCT. Yet a typical example of the misconception that everyone has family and friends to support them thru a transplant is right smack on the bethematch website. If you read "Caregiver" which is a prerequisite to qualify for the transplant, its assumed it will be a family or some huge network of friends and family, and neighbors. There's no "If you don't have family, neighbors and friends" then do this pathway. Your not alone. Good Luck, and I hope it all works out for you.
I see your point. The Be The Match What to Think about When Selecting a Caregiver (http://bethematch.org/Patient/Transplant_Planning/What_to_Think_about_When_Selecting_a_Caregiver.aspx) page talks about either having one family member or close friend be your caregiver or having multiple family members or close friends share the responsibility.

What if you have none of those choices? You could talk to a social worker at the treatment center and perhaps learn of resources in your area. Perhaps they have a system of volunteers to help transplant patients. You aren't the first one to face this problem.

Perhaps there are some useful ideas on the Be the Match Role of the Transplant Caregiver (http://bethematch.org/Patient/Caregiving/Caregiver_Role/Role_of_the_Transplant_Caregiver.aspx) page, where they talk about organizing a support team and give links to websites for that topic. You still need to find people to help, but perhaps they could be less-close acquaintances like neighbors or coworkers or community volunteers who each help a little.

Having no caregivers can interfere with your chance of success, so it's worth considering any approach that might work.

If anyone learns more about the choices for transplant patients without an obvious caregiver, please post about it.

[sbk007]

I see your point. The Be The Match What to Think about When Selecting a Caregiver (http://bethematch.org/Patient/Transplant_Planning/What_to_Think_about_When_Selecting_a_Caregiver.aspx) page talks about either having one family member or close friend be your caregiver or having multiple family members or close friends share the responsibility.

What if you have none of those choices? You could talk to a social worker at the treatment center and perhaps learn of resources in your area. Perhaps they have a system of volunteers to help transplant patients. You aren't the first one to face this problem.

Perhaps there are some useful ideas on the Be the Match Role of the Transplant Caregiver (http://bethematch.org/Patient/Caregiving/Caregiver_Role/Role_of_the_Transplant_Caregiver.aspx) page, where they talk about organizing a support team and give links to websites for that topic. You still need to find people to help, but perhaps they could be less-close acquaintances like neighbors or coworkers or community volunteers who each help a little.

Having no caregivers can interfere with your chance of success, so it's worth considering any approach that might work.

If anyone learns more about the choices for transplant patients without an obvious caregiver, please post about it.

Neil, when you read "the role of the caregiver", it rubs it in again by assuming it will be family. Thanks for the reply.

[Susan L]

I am still waiting for the appointment set up for the evaluation - but beginning to be a peace with the decision for the sct. I am hoping I can qualify for something and willing to give it a try. Seems right with the insurance approving and my doctor being affiliated with Northsides Bone Marrow Hospital - last time I had problems - my insurance was the biggest hang up to everything. Best wishes to all:)

[Susan L]

I have an appt set up now ---- Sept 10th. I am excited that I will finally have someone look at everything and give me some options. Hope everyone is doing well.
:)

[PattiDean]

I have an appt set up now ---- Sept 10th. I am excited that I will finally have someone look at everything and give me some options. Hope everyone is doing well.
:)

Susan, we will keep you in our thoughts and prayers!

((((HUGS))))

Patti and Dean

[Susan L]

Thank you - I am excited about it and want to get started.

[Susan L]

Thank you for response- I wanted to show you my latest bone marrow chromosome breakdown = Fibrosis 3+, Trisomy 16 and t (1:21) - still not to sure on analyzing that part.

[PattiDean]

Thank you for response- I wanted to show you my latest bone marrow chromosome breakdown = Fibrosis 3+, Trisomy 16 and t (1:21) - still not to sure on analyzing that part.



Hello Susan,

I don't understand the chromosome reports, I sure wish I did. Dean's report shows the following, but I have no idea what it means. :-(

44,XY,t(3;22)(p21;q11.2),add(5)(q11.2),-7,der(15;17)(q10;q10)[11]/46,XY[9]

I know you are looking forward to your appointment on September 10, sometimes not knowing or understanding is more difficult than knowing what we are facing.

I wish we were closer because Dean and I understand how difficult it is to not have family there to support you. This morning Dean broke down and cried, he just said "we are so alone"! Not really, at least we have each other, but I think it is becoming overwhelming.

The last two weeks Dean has been at the doctor's, had labs, been at the hospital and had transfusions, one day was a six hour visit to Moffitt, and I guess we are both worn down. Dean keeps telling me "he is so tired of being tired". We have now wiped away those tears, we all need a few moments in the day to cry, after that we try to turn our frown upside down and smile.

Sending you lots and lots of (((HUGS))) today Susan! Keeping you in our thoughts and our prayers!

Patti and Dean

[Susan L]

Hi Patti and Dean- I so know how Dean feels - I have been there in my thoughts many times going thru this. My husband and I have a strong spiritual faith and just believe we are never given trials we will not be able to handle (It sure gets really tough thou) I know its hard not knowing what all the chromosomes mean. I try to look up as much as I can - but sometimes plain explanation would be easier. We use to live in Dunedin--and are very familiar with Florida and Clearwater. My parents lived in St Pete, we brought them here to help when they were sick and they have since passed away. I wish you both strength.

[Sally C]

Dear Patti,
As you know my heart just breaks at yours and Dean's pain - and feeling alone. How I wish I was close by!
The Lord's Hand - I was snooping around Marrowforums yesterday and found this informative post. I can't attribute it to the wonderful author because I only copied the information. I think it will explain alot of Dean's biopsy report. Of course, what it all means beyond that maybe someone else can help. And if the person who wrote this sees my post, please step up and take credit. Thank you!
God Bless you Patti and Dean - and many (((hugs))),
Sally

Cytogenetics from my personal experience:

I was extremely confused when I received my first cytogenetic report. I understood that I had "complex cytogenetics" meaning multiple chromosome abnormalities and that this was very bad news. After a lot of reading, this is my basic understanding of the notations in the report. Notations vary slightly from lab to lab. Anyone, please correct me if I'm wrong about any of this info. I have no medical expertise and don't want to give out misinformation.

Cytogenetics, for our purposes, is the study of chromosomes and their structure. We are not talking about inheritance and genetics. Each of our cells has 23 pairs of chromosomes or a total of 46. The term "karyotype" means the arrangement and structure of the chromosomes. If one has no chromosome abnormalities, it will be designated 46,XX for a female or 46,XY for a male.

The pairs of chromosomes are labeled 1 through 23, and each individual chromosome has two arms, the top or short arm is labeled "p" and and the bottom or long arm is labeled "q". Each arm has numerically labeled regions.

In damaged chromosomes, anomalies or defects are generally classified as deletions, additions, translocations or inversions.

Deletions:If an entire chromosome is missing, it is designated monosomy, such as "monosomy 7" or "-7"; If only part of a chromosome is missing it is designated del( ). For example a deletion of the entire q arm of chromosome 5 might be notated "del(5q)" or "-5q"; if only part of an arm is missing, there will be an additional notation showing which region, for example "del(5q21:33)" or "del(5)(q21)".

Additions: Sometimes there is an extra copy of a chromosome, called trisomy, such as "trisomy 8" or "tri(8)" or "+8". Sometimes instead of a copy, there is an addition of unknown origin, designated "marker" such as "mar(unknown)" or "+mar".

Inversions: Sometimes the arms of a chromosome are partially or completely inverted - all or part of the p arm is swapped with all or part of the q arm on the same chromosome. This is noted something like "inv(4)(p13q22)" to show which regions are swapped.

Translocations: Sometimes part of a chromosome gets swapped with or added to part of a different chromosome. This is noted something like "t(9;22)(q34;q11.2)" meaning part of chromosome 9 (region q34) is swapped with part of chromosome 22 (region q11.2).

Going back to my own report as a full example, here is what it showed:

46,XX,-3,del(5)(q14q33),-6,+8,+mar[14]/46,XX[6]

My sample size was 20 cells. Of these [14] were abnormal with multiple anomalies and [6] had no defects.

46,XX = each cell had 46 chromosomes, all female

-3 = monosomy 3 = one of the chromosomes in pair number 3 was completely missing

del(5)(q14q33) = region 14-33 of the long arm q of one of my chromosomes in pair number 5 was deleted. This is common in MDS. If it had been the only anomaly, my prognosis would have been good but combined with my other anomalies, it wasn't.

-6 = monosomy 6 = one of the chromosomes in pair number 6 was completely missing

+8 = trisomy 8 = I had an extra copy of one of the chromosomes in pair number 8. This may be associated with AML.

+mar = I had some extra chromosome material of unknown type and origin. Sometimes the material can be identified and offers clues to prognosis or origin. Mine did not.

After 3 cycles of Vidaza, I had the same abnormalities but only in 1 of the 20 cells sampled in my biopsy, so the report looked like this:
46,XX,-3,del(5)(q14q33),-6,+8,+mar[1]/46,XX[19]

I'm happy to say that I've had 4 bone marrow biopsies since November 2010, all with cytogenetics reported as 46,XX[20], i.e. no abnormalities.

[LizR]

Sally C -What terrific information. I researched hours to find out what I could and in one post you described it well and in plain English. Thanks for finding it!!

Patti - We think of you and Dean every day. While we can't physically be there with you, know that we're sending our hugs and prayers.

[Sally C]

Hi Liz,
You are welcome but I don't want to take any credit for the plain English. I just copied and pasted - it was the genius of someone else who put it into words.
I wish you the best!
God Bless,
Sally

[Sally C]

I felt an obligation to find out who posted this wonderful information. It was "mausmish" - also known as Karen.
Great information and delivery Karen!
God Bless,
Sally

[PattiDean]

Susan my mother lived in Dunedin. We live in a retirement community, On Top Of The World.

Sally, thank you so very much for posting the explanation about Cytogenetics, it is very informative and is easier to understand than anything else I have researched on the Internet.

I see that you gave credit to "mausmish" , but thank you to both of you for posting and finding this great information'

Thank you Liz for those hugs and prayers! :)

Patti and Dean

[Susan L]

I know exactly where that is---what a small world
:)

[PattiDean]

I know exactly where that is---what a small world
:)

We moved here two years ago to take care of my mother, previously we lived in central Florida. :)

[susanML]

Hi - How similiar our lives are. Except your the caretaker for Dean and my husband will be for me. He has been in the past when I was at NIH and almost passed and then thru the different courses of chemo. Dean and I are very lucky to have sole mates that are there for us. Hope everything is going well. Susan

[PattiDean]

Hi - How similiar our lives are. Except your the caretaker for Dean and my husband will be for me. He has been in the past when I was at NIH and almost passed and then thru the different courses of chemo. Dean and I are very lucky to have sole mates that are there for us. Hope everything is going well. Susan



Your husband and I are blessed to have two special "soul mates" in our lives and we will always be there for you! Forever!

We did receive sad news this afternoon, Dean was not accepted into the trial study at Moffitt. The only other option is to try Vidaza, after that, our oncologist said Dean will just have to have constant transfusions, and at that time we should contact Hospice.

It isn't easy to hear, but we knew in our hearts that Dean's time was limited, and we were given more time than we thought possible. The most difficult part to deal with right now, is the extreme weakness and shortness of breath that Dean is experiencing. It is a struggle for him to even walk to the bathroom.

We are trying to be strong, but today has been our "it's okay to cry" day, tomorrow we will try to smile.

Keeping you in our thoughts and prayers and sending you lots of ((((HUGS)))),

Patti and Dean

[MagicBob]

Your husband and I are blessed to have two special "soul mates" in our lives and we will always be there for you! Forever!

We did receive sad news this afternoon, Dean was not accepted into the trial study at Moffitt. The only other option is to try Vidaza, after that, our oncologist said Dean will just have to have constant transfusions, and at that time we should contact Hospice.

It isn't easy to hear, but we knew in our hearts that Dean's time was limited, and we were given more time than we thought possible. The most difficult part to deal with right now, is the extreme weakness and shortness of breath that Dean is experiencing. It is a struggle for him to even walk to the bathroom.

We are trying to be strong, but today has been our "it's okay to cry" day, tomorrow we will try to smile.

Keeping you in our thoughts and prayers and sending you lots of ((((HUGS)))),

Patti and Dean

Hi Patti and Dean,

I just sent a post to you from the 'counts are falling fast" and then clicked on your 'MDS-RAEB-2 and now severe Myleofibrosis' and saw this post.

We are saddened of your news today, words aren't enough, Dru and I are
praying that Vidaza will come alive, and a miracle to happen.

I haven't given up hope for our 77th birthdays.

Our Love, Our Prayers, Our Good Thoughts, and that God Comforts Both Of You,

Bob and Dru MagicBob

[PattiDean]

Hi Patti and Dean,

I just sent a post to you from the 'counts are falling fast" and then clicked on your 'MDS-RAEB-2 and now severe Myleofibrosis' and saw this post.

We are saddened of your news today, words aren't enough, Dru and I are
praying that Vidaza will come alive, and a miracle to happen.

I haven't given up hope for our 77th birthdays.

Our Love, Our Prayers, Our Good Thoughts, and that God Comforts Both Of You,

Bob and Dru MagicBob


Hi Bob, I just answered your post on the "counts are falling fast" thread.

It is 4:00 a.m. and I am wide awake, can't sleep, luckily Dean is sound asleep in the bedroom, although he tossed and turned most of the night. We have to be at Mease-Dunedin at 7:00 a.m. for a transfusion of PRBC and platelets.

Thank you for not giving up hope for your 77th birthdays, it is going to be some party! :) I mentioned that to Dean last night, told him, "don't forget, you and Bob have a 77th birthday party planned"! He said to tell you he will be there!

Thank you for your love, prayers and thoughts, we pray for comfort and peace from God, for everyone, each night before going to sleep.

As always, sending you and Dru our love, hugs, faith, hope, prayers and some smiles to brighten your days...... :)

Patti and Dean

[susanML]

I am so sorry for your news. But do not give up hope. I have seen where the Vidaza did work for some people. We can never give up hope. I will pray for you both -

[Sally C]

Dear Patti,
I am so sorry to hear this. But as Susan said - never give up. You have many people praying for you. God can perform miracles.
With love a prayers,
Sally

[Al's Wife]

Patti,

You and Dean are in our thoughts and prayers. Hopefully the Vidaza will be just the thing that pulls Dean out of this decline. Please don't give up and don't let the doctors take him off too soon. Al only had Vidaza for six months and they took him off and I always wondered if they took him off too soon. He will start his 13th cycle of Dacogen on Monday and his counts are higher than they have been in three years. While the Dacogen had kept him relatively stable for the last year, it wasn't until Cycle 11 that the numbers actually went up. His platelets went from virtually 0 two months ago to 72,000 today. He has been on a low dose since January, as I had read that elderly people with AML did better on a low dose and suggested it to the doctor. So far - so good.
Now if we can get Dean on the right path again. Such an awful roller coaster ride for us all.
I'm praying for strength for both you and Dean and that he tolerates the Vidaza well. I've also read where some people that had quit responding to Dacogen were given it a second time and responded again - so be sure and check out ALL options.
One year ago yesterday we were told Al had "weeks not months" since he had transformed to AML. He was in a wheelchair and on oxygen 24/7 and could hardly get out of bed. I know y'all have been back and forth too, so you well know to embrace each and every day.
So please hang in there and tell Dean not to give up.
Prayers coming your way,

[slip up 2]

The average time Vidaza works is 9 months....many get longer & for some it will never work....Kate

[MagicBob]

Al's Wife

Linda, your post today sure has given me a shot-in-the-arm, and like Dean and Patti, I haven't been getting any good news. Last Monday my MDS specialist at Johns Hopkins gave me a pin (HOPE) and your post reiterates that and it is what we need to hear.

Al is living proof of what can happen, and he hasn't been the first, so there is Hope for all of us.

OUR LOVE AND PRAYERS TO YOU AND AL,

Bob and Dru MagicBob

[PattiDean]

Patti,

You and Dean are in our thoughts and prayers. Hopefully the Vidaza will be just the thing that pulls Dean out of this decline. Please don't give up and don't let the doctors take him off too soon. Al only had Vidaza for six months and they took him off and I always wondered if they took him off too soon. He will start his 13th cycle of Dacogen on Monday and his counts are higher than they have been in three years. While the Dacogen had kept him relatively stable for the last year, it wasn't until Cycle 11 that the numbers actually went up. His platelets went from virtually 0 two months ago to 72,000 today. He has been on a low dose since January, as I had read that elderly people with AML did better on a low dose and suggested it to the doctor. So far - so good.
Now if we can get Dean on the right path again. Such an awful roller coaster ride for us all.
I'm praying for strength for both you and Dean and that he tolerates the Vidaza well. I've also read where some people that had quit responding to Dacogen were given it a second time and responded again - so be sure and check out ALL options.
One year ago yesterday we were told Al had "weeks not months" since he had transformed to AML. He was in a wheelchair and on oxygen 24/7 and could hardly get out of bed. I know y'all have been back and forth too, so you well know to embrace each and every day.
So please hang in there and tell Dean not to give up.
Prayers coming your way,


Thank you Linda! It is funny what you say about taking Al off of Vidaza too soon, I have had the same thought about Dean and Dacogen.

MagicBob's post to you says it perfectly, you and Al do give us hope, and that is what we need. It doesn't seem like it has been a year, I remember when Al was so very sick.

That is great news about Al's recent blood counts, and we do need to hear good news! :)

Sending love and (((HUGS))) to you both! You always keep us believing that it isn't over yet!

You are in our thoughts and prayers always!

Patti and Dean

[MagicBob]

Patti/Dean

Did Dean have transfusions today, if so how is he feeling.

I received 12 units of Platelets this morning, CBC & Oncologist on Thursday and 2 units of Red and 12 units of Platelets on Friday. So far the transfusions haven't moved the counts very much. Platelets from 7 to 11.

Our love and prayers to you and Dean,

Bob and Dru

[PattiDean]

Patti/Dean

Did Dean have transfusions today, if so how is he feeling.

I received 12 units of Platelets this morning, CBC & Oncologist on Thursday and 2 units of Red and 12 units of Platelets on Friday. So far the transfusions haven't moved the counts very much. Platelets from 7 to 11.

Our love and prayers to you and Dean,

Bob and Dru



Good Morning Bob,

Yes, Dean received one unit of PRBC and single donor platelets yesterday, that could be anywhere between 4 - 6 units. The nurses told us they believe single donor platelets are better for Dean, they come from one donor and are believed to be more potent.

Dean did receive single donor platelets on Friday, and at his labs on Monday his platelets were 5, they ran the CBC again and the platelets were 3, so the platelet count went down to their lowest point even with the transfusion on Friday. Dean has labs again tomorrow, we are waiting and wondering if the transfusion yesterday made a difference.

Dean doesn't feel any better, still so weak and short of breath. How are you feeling Bob?

You and Dean seem to be on the same schedule. He has labs on Mondays and Thursdays, and transfusions on Tuesdays and Fridays. :)

We will let you know the results of the labs tomorrow. Praying that both of you have improved counts!

Lots of (((HUGS))) Bob! You and Dean need some good news, that's for sure!

Patti and Dean

[MagicBob]

Good Morning Bob,

Yes, Dean received one unit of PRBC and single donor platelets yesterday, that could be anywhere between 4 - 6 units. The nurses told us they believe single donor platelets are better for Dean, they come from one donor and are believed to be more potent.

Dean did receive single donor platelets on Friday, and at his labs on Monday his platelets were 5, they ran the CBC again and the platelets were 3, so the platelet count went down to their lowest point even with the transfusion on Friday. Dean has labs again tomorrow, we are waiting and wondering if the transfusion yesterday made a difference.

Dean doesn't feel any better, still so weak and short of breath. How are you feeling Bob?

You and Dean seem to be on the same schedule. He has labs on Mondays and Thursdays, and transfusions on Tuesdays and Fridays. :)

We will let you know the results of the labs tomorrow. Praying that both of you have improved counts!

Lots of (((HUGS))) Bob! You and Dean need some good news, that's for sure!

Patti and Dean

Same with me, still weak and shortness of breath. Received 12 units Platelets yesterday and thank God no Rigors. We have been trying to get
single donor platelets, and haven't had any luck.

I will also let you know of my labs tomorrow, and yes I agree a little good news would surely help us.

Our prayers and love,

Bob and Dru MagicBob

[PattiDean]

Same with me, still weak and shortness of breath. Received 12 units Platelets yesterday and thank God no Rigors. We have been trying to get
single donor platelets, and haven't had any luck.

I will also let you know of my labs tomorrow, and yes I agree a little good news would surely help us.

Our prayers and love,

Bob and Dru MagicBob


Hi Bob and Dru,

How were your labs today?

Dean's actually weren't too bad, better than they have been.

WBC 1.2
RBC 2.3
HGB 8.3
PLTS 17

Dean has to return for labs again tomorrow, they want to see if there is a change, and schedule him for a transfusion in the afternoon, if necessary. I think they just want to make sure he will be okay over the week end.

We hope you had good news today!

Sending lots of love, hugs, faith, hope, prayers and smiles!

Patti and Dean

[MagicBob]

Hi Bob and Dru,

How were your labs today?

Dean's actually weren't too bad, better than they have been.

WBC 1.2
RBC 2.3
HGB 8.3
PLTS 17

Dean has to return for labs again tomorrow, they want to see if there is a change, and schedule him for a transfusion in the afternoon, if necessary. I think they just want to make sure he will be okay over the week end.

We hope you had good news today!

Sending lots of love, hugs, faith, hope, prayers and smiles!

Patti and Dean


We are happy to see the move up with Dean's Platelets, that was a big jump with only 4-6 units. That is really something to Smile about. Single donor is by far the best, I inquired about them as was told they are difficult to get.


WBC 1.3 up
RBC 3.4 up
HGB 10.0 up
PLTS 10 down Received 12 units on Tuesday and will get another 12 tomorrow.

Remember, faith and hope is powerful.

Our love and prayers to you and Dean,

Bob and Dru MagicBob

[billyb]

Patti, We have a hard time getting single doner platlets also, I keep track of your counts a little bit, has the doc ever mentioned Deans Leukemia is of the smoldering type, I was just wondering. Sending prayers your way, we have labs and transfussions tomorrow also

[billyb]

Got ya"ll in our prayers to Bob

[PattiDean]

We are happy to see the move up with Dean's Platelets, that was a big jump with only 4-6 units. That is really something to Smile about. Single donor is by far the best, I inquired about them as was told they are difficult to get.


WBC 1.3 up
RBC 3.4 up
HGB 10.0 up
PLTS 10 down Received 12 units on Tuesday and will get another 12 tomorrow.

Remember, faith and hope is powerful.

Our love and prayers to you and Dean,

Bob and Dru MagicBob


Hi Bob and Dru,

We never realized how lucky we have been, the last two platelet transfusions have been single donor. It is discouraging when the counts don't go up after receiving transfusions, hopefully the 12 units today will make a difference!

Dean and I are constantly thinking and worrying about the next lab day and what his counts will be. When they go up just a little, we are happy, when they don't improve, we can't help but feel discouraged.

Dean is scheduled for a type and cross match at 8:00 a.m., then transfusions at 11:30 a.m. Thankfully our hospital is only three miles away, so we come back home in between.

We try to keep having hope and faith, some days are easier than others. :)

Thank you for the love and prayers, Dean and I always keep you and Dru, Billy and Tina, and many others in our thoughts and prayers. Much of our hope comes from our prayers.

Sending you and Dru our love and lots of (((hugs)))) today!

Patti and Dean

[PattiDean]

Patti, We have a hard time getting single doner platlets also, I keep track of your counts a little bit, has the doc ever mentioned Deans Leukemia is of the smoldering type, I was just wondering. Sending prayers your way, we have labs and transfussions tomorrow also


Dean and I didn't realize how lucky we are that he has been able to receive single donor platelets. His last two transfusions have been single donor, and his oncologist has them requested for today. It does seem to make a difference, Dean's platelets did go up.

Dean's doctor hasn't mentioned the smoldering type of Leukemia, but we see him every Monday, and we will ask him. Not sure, what is that Billy?

How are you and Tina today? Sending our love and prayers to both of you!


(((HUGS)))

Patti and Dean

[bebop]

one thing about blood and platelets is the age of them. blood last longer than platelets. Dad had single donor for a long time. I don't know where you guys are but Dad's came out of the Atlanta Red Cross to Gainesville Ga. You might want to check with them.

[sstewart09]

If I'm not mistaken, they can do one step better than single donor which is called HLA matched. This might be something to ask about if transfusions aren't holding. I know it does take some time though to find a match.

[PattiDean]

If I'm not mistaken, they can do one step better than single donor which is called HLA matched. This might be something to ask about if transfusions aren't holding. I know it does take some time though to find a match.

Thank you sstewart. :-)

[Susan L]

Hi - I havent seen anything for a couple days and am hoping everything is going ok. My evaluation is moved up to Tuesday and I am having little panic attacks - errr . Just so hoping things arent too far that I can get something going. take care - Susan

[PattiDean]

Hi - I havent seen anything for a couple days and am hoping everything is going ok. My evaluation is moved up to Tuesday and I am having little panic attacks - errr . Just so hoping things arent too far that I can get something going. take care - Susan


Susan, so thankful to hear that your evaluation will be next week. Waiting is so difficult. We can certainly understand your panic attacks, I couldn't imagine not having them. We will keep you in our prayers Susan! Please let us know how your appointment goes, hopefully it will be good news, you do need that.

Dean's oncologist is going to start him on Vidaza this Monday, along with labs everyday to keep an eye on his counts. If needed, Dean will also have transfusions during the week. Dean's counts are so low, his doctor wants to try to keep them stable during the treatment.

Today is labs, and transfusions tomorrow, but Dean is hopeful about starting Vidaza.

Sending you lots of love, hugs, faith, hope, prayers,

Patti and Dean

(((HUGS)))

[MagicBob]

Susan, so thankful to hear that your evaluation will be next week. Waiting is so difficult. We can certainly understand your panic attacks, I couldn't imagine not having them. We will keep you in our prayers Susan! Please let us know how your appointment goes, hopefully it will be good news, you do need that.

Dean's oncologist is going to start him on Vidaza this Monday, along with labs everyday to keep an eye on his counts. If needed, Dean will also have transfusions during the week. Dean's counts are so low, his doctor wants to try to keep them stable during the treatment.

Today is labs, and transfusions tomorrow, but Dean is hopeful about starting Vidaza.

Sending you lots of love, hugs, faith, hope, prayers,

Patti and Dean

(((HUGS)))

Hi Patti and Dean,

Good to see your post, I sent you an email several days ago, as we hadn't seen any post for awhile. Happy to see that Dean is finally getting the Vidaza, and praying that it helps boost his counts.

My MDS doctor at Johns Hopkins called yesterday morning and informed us that the final report from BMB shows Blasts at 20, a real shocker. Also indicated that I only have a 50-50 chance for the Clinical Trial.

Platelet transfusions aren't helping currently at 7.

Hanging in there, Bob and Dru

[billyb]

Bob, Thinking about ya"ll and sending prayers, even though your platelets arn't moving much, the transfussions help keep them out of the negitive, which is a good thing, just be careful about bumping into things and falls........Billy

[susanML]

I guess we all in the same boat - so lets just all hold on and try and float thru this - Gotta have faith and hang on tightly - just had a meltdown at work - then it comes to me - heck we all really doing the best we can - :-)

[MagicBob]

I guess we all in the same boat - so lets just all hold on and try and float thru this - Gotta have faith and hang on tightly - just had a meltdown at work - then it comes to me - heck we all really doing the best we can - :-)

Hi Susan,

Thank you for the response, and yes hanging on plus faith/hope is a great help; however sometimes I feel like I am hanging by finger nails.

Wishing you the very best with the BMT.

Our prayers,

MagicBob

[sbk007]

Susan, My first consultation lasted all but 20 minutes.
Unless you have major health issues aside from MDS, you'll most likely be a candidate. They will probably draw blood so they can start the HLA preliminary match thru the registry. Hope that helps a bit..it is quite overwhelming. You know you're not alone. When I told my Doc that I have doubts about going ahead with SCT he said he didn't blame me. I thought he'd encourage me but he didn't. Its a rough ride and a tough call. All the best, Steve

[susanML]

I feel the same way --- just barely hanging on - today bad day of it too--- I am so hoping I can get a transplant.

[susanML]

Hi - The only other problem I have is the fibrosis of the marrow - thats what is really scaring me - I hope they will do a transplant with that addition. I am sooooo ready - May I ask if you had a match or did they do your own stem cells?---Also may I ask what region you live in?

[PattiDean]

Hi Patti and Dean,

Good to see your post, I sent you an email several days ago, as we hadn't seen any post for awhile. Happy to see that Dean is finally getting the Vidaza, and praying that it helps boost his counts.

My MDS doctor at Johns Hopkins called yesterday morning and informed us that the final report from BMB shows Blasts at 20, a real shocker. Also indicated that I only have a 50-50 chance for the Clinical Trial.

Platelet transfusions aren't helping currently at 7.

Hanging in there, Bob and Dru


Hi Bob and Dru,

I saw your email yesterday, and sent a reply to your email address. I hope you received it. If you have a chance, please let me know.

We are so sad to hear you are not doing well, you need some good news, that's for sure. When will you find out about qualifying for the trial at Johns Hopkins. Waiting and wondering is so difficult.

Dean is off to labs in a little while, wanted to reply to you before we left. Do you have labs today? Dean's platelets dropped to five a week ago, but they came up a little after the single donor transfusion. We will find out how the numbers are in a little while.

As always, keeping you in our thoughts and prayers down here.

Sending you lots of hugs, faith and hope, along with a little laughter.

Patti and Dean (((HUGS)))

[sbk007]

I'm still on the fence. I am sooooo not ready..I got a call a week ago and was told they found a preliminary match, they need me to come in discuss it a little more, then drill down and see how good the match is. I've done well with Vidaza but it doesn't work forever, so I'm having panic attacks about going through with the transplant and wonder if I'm best taking my chances with Vidaza then using the transplant as a last resort, fully knowing the results and odds would be much worse having it later rather than sooner.
My Docs cant even help me with the decision, and I cant expect them to.
I'm going to have another consult with the transplant guy and see if he can sway my decision. Good Luck & Stay Well. One day at a time...
P.S I live in Ny. Im using Cornell-Weil/Columbia Presbytarian. Same team that the GMA talk show host used.

[susanML]

I'm still on the fence. I am sooooo not ready..I got a call a week ago and was told they found a preliminary match, they need me to come in discuss it a little more, then drill down and see how good the match is. I've done well with Vidaza but it doesn't work forever, so I'm having panic attacks about going through with the transplant and wonder if I'm best taking my chances with Vidaza then using the transplant as a last resort, fully knowing the results and odds would be much worse having it later rather than sooner.
My Docs cant even help me with the decision, and I cant expect them to.
I'm going to have another consult with the transplant guy and see if he can sway my decision. Good Luck & Stay Well. One day at a time...
P.S I live in Ny. Im using Cornell-Weil/Columbia Presbytarian. Same team that the GMA talk show host used.

I understand - I go from positive to should I - back and forth - Pray about it and hopefully you will get the answer.

[PattiDean]

I guess we all in the same boat - so lets just all hold on and try and float thru this - Gotta have faith and hang on tightly - just had a meltdown at work - then it comes to me - heck we all really doing the best we can - :-)


Thank you Susan! You are right, you each are doing the best you can! I know I couldn't be as brave as each of you are, I become overwhelmed, and I am just watching.

Sending you lots and lots of (((HUGS))), Patti and Dean

[Susan L]

You are doing more to help than you think - hang in there all the way!!

[Susan L]

Hi - I was wondering if you decided for the BMT? I went for my evaluation and had another biopsy today and waiting for a call as to when I can be admitted. I understand I will have chemo first then hopefully the blasts will be down and I can go ahead with the search for a transplant. I am feeling positive with this. Only thing bothering me is the stay is going to be all inpatient and I will need a caretaker to stay with me 24/7 while in the Hope House - and that will be for up to 100 days. We are all by ourselves and wonder if they sometimes they have people that can help with staying while the spouse has to take care of things at the house ?

[sbk007]

Hi - I was wondering if you decided for the BMT? I went for my evaluation and had another biopsy today and waiting for a call as to when I can be admitted. I understand I will have chemo first then hopefully the blasts will be down and I can go ahead with the search for a transplant. I am feeling positive with this. Only thing bothering me is the stay is going to be all inpatient and I will need a caretaker to stay with me 24/7 while in the Hope House - and that will be for up to 100 days. We are all by ourselves and wonder if they sometimes they have people that can help with staying while the spouse has to take care of things at the house ?

I decided No. You can send me a PM on why. What kind of chemo first to get the blasts down?
Did they tell you how long it takes to get preliminary matches?. The way cornell weill works is they take your blood hla, then do a preliminary which takes 2 to 3 months(That's what they told me an dhow long it took). Then they'll do more extensive tests to see how good the match is. The preliminary is free, but the more extensive one to see how good the match is cost around 3k, some insurance co pay some don't, if they don't then if your income is less than your outcome(I made that word up just now) then they have grants to pay for it. This is important because it could take a bunch of donors to test before they find a good match and something that can cost a few bucks. As far as 24/7 care I know you can get it thru some agencies but haven't researched it enough. Its overwhelming, I know..Deep breaths...one day at a time..

[MagicBob]

Hi Bob and Dru,

I saw your email yesterday, and sent a reply to your email address. I hope you received it. If you have a chance, please let me know.

We are so sad to hear you are not doing well, you need some good news, that's for sure. When will you find out about qualifying for the trial at Johns Hopkins. Waiting and wondering is so difficult.

Dean is off to labs in a little while, wanted to reply to you before we left. Do you have labs today? Dean's platelets dropped to five a week ago, but they came up a little after the single donor transfusion. We will find out how the numbers are in a little while.

As always, keeping you in our thoughts and prayers down here.

Sending you lots of hugs, faith and hope, along with a little laughter.

Patti and Dean (((HUGS)))


Hi Patti and Dean,

We think about you all every day, and hoping Dean is doing better than myself.

Blasts increased to 20, and Platelet transfusions are becoming less effective and both the MDS specialist at Johns Hopkins and my Hematologist are not very optimistic.

On Sunday afternoon, I noticed black stools and went immediately to the emergency room, diagnosed with internal bleeding. I was admitted and spent the next three days receiving transfusions.

Tuesday morning's visit by my Hematologist was a bad day; with Dru and our daughters present he informed us that there wasn't any more he could.
Suggested that we talk with the hospital case worker and to make arrangements for home care.

Discharged yesterday, and this morning we all met with the Visiting Nursing Association.

We are still fighting and kicking, and you all will be updated, either by me or my daughter, Beth


Our Love, Faith, Hope and Prayers,

Bob and Dru MagicBob

[Sally C]

Dear Bob, Dru and family,
You are all in my prayers. God is with you as you know.
God Bless.
With love and prayers,
Sally

[Whizbang]

ditto...

Dear Bob, Dru and family,
You are all in my prayers. God is with you as you know.
God Bless.
With love and prayers,
Sally

[PattiDean]

Hi Patti and Dean,

We think about you all every day, and hoping Dean is doing better than myself.

Blasts increased to 20, and Platelet transfusions are becoming less effective and both the MDS specialist at Johns Hopkins and my Hematologist are not very optimistic.

On Sunday afternoon, I noticed black stools and went immediately to the emergency room, diagnosed with internal bleeding. I was admitted and spent the next three days receiving transfusions.

Tuesday morning's visit by my Hematologist was a bad day; with Dru and our daughters present he informed us that there wasn't any more he could.
Suggested that we talk with the hospital case worker and to make arrangements for home care.

Discharged yesterday, and this morning we all met with the Visiting Nursing Association.

We are still fighting and kicking, and you all will be updated, either by me or my daughter, Beth


Our Love, Faith, Hope and Prayers,

Bob and Dru MagicBob



Dear Bob, Dru and family,

It is so very sad to read your post, Bob. We wanted to hear good news for you and your family.

Bob, we never know how strong we are until being strong is the only choice we have. You are so very strong, you are giving your family the strength to keep fighting and kicking.

It has been a long week for Dean, but we have a little hope. Dean's oncologist said he wanted Dean to try Vidaza, even though the Dacogen stopped working. This week was Dean's first treatment. We won't know for awhile if it is helping or not.

Dean has received transfusions everyday this week, along with the chemo, so we have had eight and nine hours days. Dean's platelets dropped to 3 on Wednesday and his hemoglobin was 7.1 yesterday. Dean received PRBC on Tuesday and today, and platelets Tuesday and Thursday. We now have a long week end ahead of us before labs again.

Are your arms bruised? Dean's arms look awful. He is still very, very weak and short of breath. Vidaza is Dean's last option, after that he will only have transfusions, and we are not sure how long they will help.

You both are heroes to those who love and know you. Dean never complains or gets angry, just sad and scared at times.

Bob and Dru it is very difficult to find the words to tell you how we feel. Please know that your posts have meant the world to us in these last few weeks. Everyday Dean asks "Did MagicBob post something today?". Even though we have not met, Dean feels a very special connection with you.

We will keep you and your family in our hearts, thoughts and prayers. We have to keep having hope, and with faith and prayers that is possible.

Lots and lots of love and (((HUGS))) for you, Dru and your daughters!

Patti and Dean

[Susan L]

Howdy - Been in a bit of a whirlwind with everything since the eval day. Diffenately going into AML - so transplant only option. Had such a good talk with the doctor Dr Larry Morris at Ga Bone Marrow Transplant group and he is straightforward and honest - which I love. Went back Thursday for another BMB - and now Dr said if he doesnt call me Monday call him Tuesday for info on when will be admitted. I will be having 4 to 6 wks of chemo - then go to the Hope Lodge to get stronger and hopefully move onto the transplant - Now I know things never go to plan I feel right about it. I am scared - and I dont want to leave my husband and home - for the wks and still dont have my head wrapped around the possibility of being at the lodge for months ---- woke up each night and said oh no this is not going to happen then try to calm down. My biggest worry - among many things - is they say you need someone with you 24/7 at the lodge - I do not have anyone but my husband and he is not able to just leave our home and 4 dogs - who can just leave - so I am trying to find out how I can find volunteer caregivers that can stay and take me to the transfusion place --- just dont know where to find that help yet. Hope everyone is dealing w/their dx and keeping all at bay. Love to all - Susan

[Sally C]

Hi Susan,
I know you have a long road ahead but I am so impressed with your positive and upbeat attitude!
I wish you all the best - I know you'll work everything out.
God Bless and protect you,
Sally

[Susan L]

Thank you - I just want this so to work - I do have faith - and I hope we all could just get some time of no pain and just not have to have this remind us all the time.

[sbk007]

Hi Susan,
I know you have a long road ahead but I am so impressed with your positive and upbeat attitude!
I wish you all the best - I know you'll work everything out.
God Bless and protect you,
Sally

Ditto! Very Strong Lady! Inspirational!

[PattiDean]

Howdy - Been in a bit of a whirlwind with everything since the eval day. Diffenately going into AML - so transplant only option. Had such a good talk with the doctor Dr Larry Morris at Ga Bone Marrow Transplant group and he is straightforward and honest - which I love. Went back Thursday for another BMB - and now Dr said if he doesnt call me Monday call him Tuesday for info on when will be admitted. I will be having 4 to 6 wks of chemo - then go to the Hope Lodge to get stronger and hopefully move onto the transplant - Now I know things never go to plan I feel right about it. I am scared - and I dont want to leave my husband and home - for the wks and still dont have my head wrapped around the possibility of being at the lodge for months ---- woke up each night and said oh no this is not going to happen then try to calm down. My biggest worry - among many things - is they say you need someone with you 24/7 at the lodge - I do not have anyone but my husband and he is not able to just leave our home and 4 dogs - who can just leave - so I am trying to find out how I can find volunteer caregivers that can stay and take me to the transfusion place --- just dont know where to find that help yet. Hope everyone is dealing w/their dx and keeping all at bay. Love to all - Susan




(((HUGS))))

Susan, I so wish that I could be there for you, Georgia isn't that far from Florida! It is just Dean and I, no other family, so we understand how very difficult it is, emotionally and physically, when you don't have family to turn to.

We do have a little 13 year old Chihuahua who is "our little girl", she gets us through those overwhelming days.

We are keeping you in our thoughts and prayers down here, and wish we were able to be there for you.

Lots of love and (((HUGS)))

Patti and Dean

[Susan L]

Hi all-- You know I really dont feel like I such a positive person but I know I am. I think we all are - others see that but we dont. Heck - with my husband and I being alone for so many years we have just learned there is no other choice in making decisions but going head on. Patti - one of my dogs is a chihuahua - Roo - 14lbs of terror. I have two American Bulldogs one male Rocky 140 lbs - the gentle giant - his sister Adrianne 70lbs - a white cotton ball - then Jada - 55 lbs black lab - crazy over her pink ball. They are my happiness - they are all rescue dogs. Love them so much - they bring such happiness. Little by little we will figure out something for the 100 days I have to stay after the hospital which will be the 4 to 6 wks - ugh -- somehow there is a way. Take care all - love to all!!

[DebS]

Best of luck to you, Susan. You will be in all of our thoughts and prayers!

God bless!

Deb

[Chirley]

I too am alone, no husband, no children. My pets (don't even like to call them that) keep me going.

My 13 yo chihuahua died last year, it was a sudden illness on top of a chronic condition and I was devastated. I still had a 11 year old Kelpie to care for and a 10 yo cat so I still had responsibilities and companionship. Since then my father bought a rescue kitten from the Council pound and she is a real source of entertainment and unconditional love. Even my old cat and dog are amused by her antics. I'm very lucky all my "girls" get along and look after each other.

Gidget..........Kelpie
Betty............Cat
Baby Boots....Kitten

[PattiDean]

I too am alone, no husband, no children. My pets (don't even like to call them that) keep me going.

My 13 yo chihuahua died last year, it was a sudden illness on top of a chronic condition and I was devastated. I still had a 11 year old Kelpie to care for and a 10 yo cat so I still had responsibilities and companionship. Since then my father bought a rescue kitten from the Council pound and she is a real source of entertainment and unconditional love. Even my old cat and dog are amused by her antics. I'm very lucky all my "girls" get along and look after each other.

Gidget..........Kelpie
Betty............Cat
Baby Boots....Kitten

Chirley,

Thank you for sharing your story about your four legged family. Dean and I are both "only children", no siblings, and no children, our pets have always been our family.

I have a cousin in Kentucky, her and her husband have two cats and four dogs, at night they all sleep in the bedroom together, it is a funny sight to see. Each of the dogs and cats have their place on the floor!

I love the names. It was sad to hear about your Chihuahua. We have had our little one since she was two months old. She is blind in one eye and is beginning to have seizures, thankfully not often. It is going to be so difficult to say good bye when the time comes. I do hope Pebbles outlives Dean, because it will be so very difficult for him if she died, she has given him so much comfort in this past year.

I lost my mom in April, and Dean and Pebbles are all I have. I worry about the day they are not in my life anymore, I will be totally alone. I would like to rescue an older dog when I no longer have Pebbles, we could take care of each other! :-)

[Chirley]

Hi Patti,

I can't imagine my life without a four legged friend. When my little Tina became very ill I had to make the decision to euthanise. It really wasn't a difficult decision to make. I loved her so much that there was no way I was going to let her suffer. I miss her every day but I know I gave her the best life any dog could have and the best death I could give her too.

She had Addisons Disease from age 4 and there were a lot of touch and go moments throughout her life and then at the end she caught a virus off a fruitbat. She used to chew the half eaten palm dates the fruit bats dropped and she caught a virus from the saliva. She was sick one day and gone the next. Such a shock! Now I'm paranoid about searching my yard for palm dates every day and putting them in the garbage. I never knew this virus existed but I'll never forget it now.

I also learnt my lesson about the cost of treatment and I now have Health Insurance for all my "girls" so that I never have to consider the cost of treatment against the health and well being of my girls.

I think rescuing an older dog is a wonderful idea. Our local Council Pound have a scheme where any one older than 60 who adopts an older dog or cat (4 years or older) get the animal for free with all the bits included such as desexing, vet checking, vaccinating, microchipping and Council Registration.

I hope you don't have to think about it for a few more years though. My next door neighbour has a terrier mix (Lucy) who is 17 years old and still beats their younger dog to the treats, goes up and down a tall flight of outside stairs many times a day and tries to play ball with the grandchildren when they visit.

Regards

Chirley

[PattiDean]

Hi Patti,

I can't imagine my life without a four legged friend. When my little Tina became very ill I had to make the decision to euthanise. It really wasn't a difficult decision to make. I loved her so much that there was no way I was going to let her suffer. I miss her every day but I know I gave her the best life any dog could have and the best death I could give her too.

She had Addisons Disease from age 4 and there were a lot of touch and go moments throughout her life and then at the end she caught a virus off a fruitbat. She used to chew the half eaten palm dates the fruit bats dropped and she caught a virus from the saliva. She was sick one day and gone the next. Such a shock! Now I'm paranoid about searching my yard for palm dates every day and putting them in the garbage. I never knew this virus existed but I'll never forget it now.

I also learnt my lesson about the cost of treatment and I now have Health Insurance for all my "girls" so that I never have to consider the cost of treatment against the health and well being of my girls.

I think rescuing an older dog is a wonderful idea. Our local Council Pound have a scheme where any one older than 60 who adopts an older dog or cat (4 years or older) get the animal for free with all the bits included such as desexing, vet checking, vaccinating, microchipping and Council Registration.

I hope you don't have to think about it for a few more years though. My next door neighbour has a terrier mix (Lucy) who is 17 years old and still beats their younger dog to the treats, goes up and down a tall flight of outside stairs many times a day and tries to play ball with the grandchildren when they visit.

Regards

Chirley

Hi Chirley,

I so enjoyed reading about your four legged furry family. Dean and I have had four very special dogs in our lives. The first was Duffy, a Shetland Sheepdog, then a rescued mutt, Clancy, and a Dachshund, Snickers, who was a little clown, always getting in trouble.

We miss each of them, they were our family. Now we only have Pebbles, when she is no longer with us, I definitely will look for an older dog to rescue, and hopefully make their final years on earth better. I believe some of our rescue groups also have specials for seniors that adopt homeless dogs and cats. I don't know who is rescuing who though, I feel as though my doggies have rescued me.

That was so sad to read about Tina. I liked what you wrote about giving her the best life, and best death, that is what it is all about, for our four legged friends, and humans.

I do hope Pebbles is here for a few more years, because she and Dean are all I have. Pebbles is blind in one eye, has seizures, but still acts like a puppy. Her hearing isn't very good either, but sometimes I wonder if she just hears what she wants to hear, like when I call her and she doesn't come. :-)

Thank you Chirley for sharing your stores with me, you put a big smile on my face, and I need that right now!

(((HUGS))) Patti

[susanML]

Good morning all - Had a horrible weekend with breaking down every few minutes - that is not like me - But anyway now that that is overwith I am ready to get this all moving - Doc said I may get a call today but dont think I will since it is a holiday - but will call tomorrow to get updated plan. I am ready - and hope everyone is doing the very best they can. Love to all - Susan

[MagicBob]

Good morning all - Had a horrible weekend with breaking down every few minutes - that is not like me - But anyway now that that is overwith I am ready to get this all moving - Doc said I may get a call today but dont think I will since it is a holiday - but will call tomorrow to get updated plan. I am ready - and hope everyone is doing the very best they can. Love to all - Susan

Good Morning to you, Susan,

My wife and I are praying for you along with unknown thousands, strength
and faith are coming your way.

I have a strong feeling that you will receive the awaited call today, if not, many are holding you in their arms until tomorrow's call.

With our love, prayers and comfort,

Dru and Bob MagicBob

[susanML]

Thank you so much for your kindness.