New MDS diagnosis BMT advised

[Diver down]

Hi,
My husband 57 yo, avid cyclist and scuba diver always healthy until now was hospitalized with pancytopenia fever and pneumonia this month and diagnosed with high risk MDS RAEB 2 with unfavorable complex cytogenetics. Stem cell transplant advised and we are looking into centers in our state of Florida as well as considering Sloan and Dana Farber though travveling away from home would be complicated it is possible. Local center has a lot of experience with autologous transplant but only recent limited experience in the last 2 years with allogeneic transplant. Bridge therapy was also recommend but it seems there is no consensus as to what is best - and range from Dacogen 5 day cycles , Vidaza 5 days off 2 and on 2, or Vidaza 5 d followed by Revlimid daily for 21 d (experimental ) or vidaza 7 d; No transfusions yet but baseline counts now ANC 600plat 57K and Hgb 8.4. and just received Aranesp. Overwhelmed by treatment options. Also encountering debate on recommendations for preventative antibiotics and antivirals while on Vidaza or Dacogen. No sibling candidate so has to be unrelated donor. This is all new and overwhelming. Glad to know the Marrow forum is out there for support. All thoughts from the group welcome.

DD

[sbk007]

From here you can compare the different transplant centers.
http://bethematch.org/For-Patients-a...comes-for-MDS/

Sloan has an incredible success rate with MDS as well as their other disease types. But, many people have good results elsewhere.

Vidaza 5 days on off 2 and vidaza 7 days is really the same thing. Some centers aren't open on weekends so that's how you get off 2. Dacogen is similar to vidaza in the way that it works, some docs like dacogen some vidaza. Don't know if its worth doing the trial knowing that the response rate to vidaza& dacogen is good. If going to transplant while waiting for the donor the thinking is to stabilize the disease before transplant. The dacogen & vidaza is used to get the blast count down.

This is overwhelming but there's a lot of info on this site and a lot of people that walk the same streets and will help. Take it one day at a time.

[Tii]

I read your posting about being overwhelmed, and it caught my eye.

In few days I will be 11 months old after my allogenic bone marrow transplant I received Dec2012. In July 2012 I was 36, healthy, active, fit, working full time, and all of the sudden I got diagnosed with MDS intermediate risk-2. The roller coaster started and it is still going.

I placed my trust in the two doctors I was given, I went through few cycles of Vidaza, blood transfusions, preparations and pre-testings for the BMT and then finally I received my BMT (sister donor) and then extra long recovery with more transfusions. For me there was no time to think, compare and weigh in options, it had to be done asap. And what a ride it has been!

I have 3 other BMT friends, two of which had unrelated donors, and one using his own cells next week. We all have different diagnosis, different side effects, different results. But what is in common with all of us, is that the worry, concerns, fear, overwhelmed feelings was something we felt and still feel and go through, but we got a second chance in life because of the transplant.

I sincerely wish all the best to you and your husband, he has a great potential to bounce back. We are here to help!

[Susan L]

Originally Posted by Diver down

Hi,
My husband 57 yo, avid cyclist and scuba diver always healthy until now was hospitalized with pancytopenia fever and pneumonia this month and diagnosed with high risk MDS RAEB 2 with unfavorable complex cytogenetics. Stem cell transplant advised and we are looking into centers in our state of Florida as well as considering Sloan and Dana Farber though travveling away from home would be complicated it is possible. Local center has a lot of experience with autologous transplant but only recent limited experience in the last 2 years with allogeneic transplant. Bridge therapy was also recommend but it seems there is no consensus as to what is best - and range from Dacogen 5 day cycles , Vidaza 5 days off 2 and on 2, or Vidaza 5 d followed by Revlimid daily for 21 d (experimental ) or vidaza 7 d; No transfusions yet but baseline counts now ANC 600plat 57K and Hgb 8.4. and just received Aranesp. Overwhelmed by treatment options. Also encountering debate on recommendations for preventative antibiotics and antivirals while on Vidaza or Dacogen. No sibling candidate so has to be unrelated donor. This is all new and overwhelming. Glad to know the Marrow forum is out there for support. All thoughts from the group welcome.

DD

I am sending you all the best that can be given. I am 58 and have been with the horrible disease for yrs. This site is the best for info to help you out - Check the sites give for treatment centers as it does make a difference. In the yrs that have past so much success has happened in treatment and transplants for us. I have no family and have recently been told that a 10 out 10 match has been found and I will be starting my journey. I know you are scared and confused with it all but there is help out there - do your research and get a doctor that knows the disease. Best to you both. Susan

[DebS]

DD,

The first thing to do is take a DEEP breath! This is always overwhelming. I am constantly amazed at how many healthy and fit people are hit with this insidious disease.

My husband was diagnosed in Dec. 2012. It was a few days before Christmas. We had to hit the ground running and have been running ever since. But, we have found out that you do have to take it easy from time to time or you will go absolutely crazy!

Everyone's case is different as has been stated here. My husband was also diagnosed with unfavorable cytogenetics. He started Vidaza and was on it for approximately 6 months. During that time, he felt good and we were able to do some traveling with constant blood tests thrown in. But it did buy us some time to get a donor in place, do some fun things and just live and enjoy life.

When things went downhill, they went fast. In August the Vidaza had clearly stopped working and he was told that now is the time for transplant. There were no other options so it was a no-brainer decision, really.

He had his transplant on Oct. 8 with cells from his brother--a 10/10 match. He is recovering well. There are still, of course, some issues. But all in all he is really doing well. We are at Day +26.

As people have stated, do your research and check these forums constantly.

I have said again and again that I would have been lost without the people on here. There is so much caring and concern it will blow you away! And the information is coming from the people who are living this right now.

Best of luck to you and your husband.

Deb

[revchris5802]

I'm sure this is a very scary time, but as the transplant is the only cure, I would consider doing it. I may be right behind you! Being in good health will definitely serve you well, and although it's scary, these are some of the most dedicated people in the field. Your biggest risk is graft versus host disease, but there are treatments to manage that. I would pursue more information, including visiting the transplant unit and talking to some of the staff. and if possible, some of the patients.

Originally Posted by Diver down

Hi,
My husband 57 yo, avid cyclist and scuba diver always healthy until now was hospitalized with pancytopenia fever and pneumonia this month and diagnosed with high risk MDS RAEB 2 with unfavorable complex cytogenetics. Stem cell transplant advised and we are looking into centers in our state of Florida as well as considering Sloan and Dana Farber though travveling away from home would be complicated it is possible. Local center has a lot of experience with autologous transplant but only recent limited experience in the last 2 years with allogeneic transplant. Bridge therapy was also recommend but it seems there is no consensus as to what is best - and range from Dacogen 5 day cycles , Vidaza 5 days off 2 and on 2, or Vidaza 5 d followed by Revlimid daily for 21 d (experimental ) or vidaza 7 d; No transfusions yet but baseline counts now ANC 600plat 57K and Hgb 8.4. and just received Aranesp. Overwhelmed by treatment options. Also encountering debate on recommendations for preventative antibiotics and antivirals while on Vidaza or Dacogen. No sibling candidate so has to be unrelated donor. This is all new and overwhelming. Glad to know the Marrow forum is out there for support. All thoughts from the group welcome.

DD

[Diver down]

Wow. Your support and advice are greatly appreciated!!! We are still researching transplant centers but definitely on board with going for BMT and have initiitate HLA typing. Considering a trip to Sloan but will need to balalnce staying locally with a 3 month relocation and then follow up away from our home town. Becaouse of the high risk and unfavorable cytogenetics on the advice of the docs today my husband started the Vidaza SQ. He did OK - no nausea but tonight we noticed a lot of redness all around the 3 areas where he was injected. It does not hurt or itch - just very red; I guess we will talk to the doctor tomorrrow. Has anyone had a similar experience? Will it just go away? Does it require a change in treatment plan?
DD

[Tii]

My skin reacted very badly to Vidaza. They tried my stomach and upper thigh area for the injections. It started with the red spots around the injection site, but then they started to ooze and itch and hurt, and they had to switch me to a IV form. I had an IV needle in my hand/arm for 5 days during the treatment and didn't have to deal with the injection pain as it was intravenous. But I still show a scar or burn mark from the injections in my stomach

The injection treatment is a faster office visit than the IV, with that you will have to sit there for an hour at least. My insurance didn't "cover" the IV, but after my bad reaction, they had no choice but to cover it, as it was doctors orders.

Remember to write down your questions to take with you when you go see the doctor, and then write down the doctors answers for a later time to recall what they said. There are no stupid questions, ask away!!

[sbk007]

Originally Posted by Diver down

Wow. Your support and advice are greatly appreciated!!! We are still researching transplant centers but definitely on board with going for BMT and have initiitate HLA typing. Considering a trip to Sloan but will need to balalnce staying locally with a 3 month relocation and then follow up away from our home town. Becaouse of the high risk and unfavorable cytogenetics on the advice of the docs today my husband started the Vidaza SQ. He did OK - no nausea but tonight we noticed a lot of redness all around the 3 areas where he was injected. It does not hurt or itch - just very red; I guess we will talk to the doctor tomorrrow. Has anyone had a similar experience? Will it just go away? Does it require a change in treatment plan?
DD

People react differently to SQ. Some tolerate it Some don't. My doc had me go straight to IV b/c he got tired of dealing with skin reactions. It takes a half hour. I do take a nausea pill an hour before. If he tolerates the shots its faster and you avoid the infusion. Some insurance companies let you self administer it at home. It saves them money.. If the skin bothers him the treatment plan would change by switching him to IV. Many people do this(switch).

[slip up 2]

We used Evening Primrose Capsules for the Vidaza......we broke them open right after the Vidaza shots....& very lightly put it on....3 times per day right after the shot.....only a few red burn marks ever appeared.....sounds odd but it works...kate

[Kathy S]

My husband was diagnosed with MDS in May. It is a whirlwind trying to get information and make the best possible decisions. We started in Buffalo, NY(summer home) and immediately came back to Florida area where our permanent home is (Leesburg,Fl). We first went right to MD Anderson in Orlando, but found out they do not do BMT there. At this time I did research and after getting as much information as possible we made an appointment at Moffitt Cancer Center in Tampa.
He has been on Vidaza since June 24, 2013. On Aug 28th,2013 we had wonderful news that he had gone into complete remission. His report today was the same. All of his blood counts are normal and I thank God for this too happen so quickly.
We have an appointment Dec.4th at Moffitt for another Bone Marrow Biopsy and to move forward for BMT after the first of the year and a donor can be found.
It is totally his decision to move forward with the transplant...I am scared and pray for the strength to be positive for his sake.
He had 2 blood transfusion in the first two months and a unit of platlets.
June ------------- ---- --------------- today
PLT------------ 32 ------------------------- 234
WBC----------- 1.9 ----------------------- 6.0
HGB----------- 8.1 ------------------------ 15.3

[Cheryl C]

Wow! amazing results and fantastic news.

[Whizbang]

Best of luck to you Kathy S / Husband...

Best to all and God Bless...

[Kathy S]

My prayers to all going through this frustrating disease. So happy that you are young and have found a 10/10 match.