MDS RAEB-2 and now severe Myelofibrosis

[Susan L]

Originally Posted by Birgitta-A

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]

Originally Posted by Susan L

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]

Originally Posted by Susan L

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]

Originally Posted by sbk007

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 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 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]

Originally Posted by Neil Cuadra

I see your point. The Be The Match What to Think about When Selecting a Caregiver 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 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]

Originally Posted by 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.

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]

Originally Posted by 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.

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]

Originally Posted by Susan L

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]

Originally Posted by 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

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]

Originally Posted by PattiDean

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]

Originally Posted by MagicBob

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