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]

Originally Posted by 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.

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]

Originally Posted by MagicBob

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]

Originally Posted by 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

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]

Originally Posted by PattiDean

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]

Originally Posted by 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

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]

Originally Posted by 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.

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]

Originally Posted by 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

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]

Originally Posted by Cheryl C

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]

Originally Posted by 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

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]

Originally Posted by 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

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)