Deciding factor for transplant?

[bailie]

What is the deciding factor on when to get a bone marrow transplant? It seems like the earlier the better while a patient is still very healthy. But, are other approaches tried first, in my case Vidaza? I am thinking that I might not be as healthy after the Vidaza treatment. I am 67 years old and in otherwise excellent health.

[katgio50]

My husband was 72 when diagnosed withMDS and responded well to Procrit shots only. After 18 months he rapidly went into AML and proceeded toward the transplant. I have heard and also read that the fact that he hadn't had prior chemo was in his favor as he attained CR after one round of induction. He also has done well with the transplant and is currently at Day 42.

[bailie]

Thank you, that is encouraging that he is doing well. I would guess that they will be discussing transplant for me if I don't respond to the Vidaza after about three-four months.

[Birgitta-A]

Hi bailie,
You know now they can combine Vidaza with other drugs for better response rate. Vidaza alone shows about 50% response rate but many of the combinations show more than 70% response rate.

Here is a report about Vidaza ans Zolinza (apporoved but not for MDS):
http://www.mdsbeacon.com/news/2013/1...-mds-ash-2013/
Kind regards
Birgitta-A

[bailie]

Thank you. I have noticed studies with Revlimid and Vidaza also showing promise in trials.

I have wondered why the newscaster Robin Roberts situation went right to transplant and not to Vidaza? What was her IPPS-R or FISH situation? Was there the desire to transplant while she was at her healthiest state?

[Whizbang]

baile,

I also went right to transplant (Same Hospital as Robin Roberts - Memorial Sloan Kettering MSKCC)...

The theory is to get you back into remission as quick as possible after diagnosis, find a good match (both of us had 10/10 sibling matches)...

And then do the transplant... MSKCC believes that the sooner after diagnosis you do the transplant, the better the BMT will be (for MDS at least)...

I have met quite a few primary MDS patients, and all of us were diagnosed in April, May & June of this year, and once in remission went right to transplant...

Our outcomes so far have been very good... I'm only at day 50, but things are going quite well for me thus far...

Check out my BMT thread for my story...
http://forums.marrowforums.org/showthread.php?t=3792

[bailie]

That makes perfect sense. I am expecting (hoping) to get the same guidance at perhaps my third cycle of Vidaza. I really appreciate your input.

[Whizbang]

Also realize that whether to 'Transplant or not' should not be taken lightly...

You need many things to help it go right, including:
good insurance / financial ability
strong support network (family, caregiver)
the right BMT facility (seattle near you...)
good health and attitude
and a good donor is also key...

You have to weight the risks vs. the reward...

For me with 3 young children, there was only one choice...

[DebS]

I echo Whizbang's comment about weighing the options of transplant. You really do need to be committed to it and have all of the backup support he mentioned.

My husband was on Vidaza and had good results for awhile. It bought us some time to travel and enjoy family and friends. Then things went downhill fast. His hemoglobin was dropping and dropping. After the BMB in August, we were pretty much not given a Door #2. Transplant was the ONLY option.

He is at Day +74 and doing well. Not great, but all things considered, he is doing very well. We are so grateful that we proceeded with the transplant.

He received his MDS diagnosis exactly one year ago today. So from Jan.-July he did well with the Vidaza. Then in August the decision to go to transplant was made. He went into the hospital the end of Sept. and had the transplant in Oct.

That should give you an idea of a timeline. But everyone is different. When we first heard the news and he was going through the treatments, OUR timeline was maybe next March. It did not turn out that way.

My advice would be to do your research, find a donor, talk to as many doctors as you can. Even with starting the Vidaza treatment, we were looking to his siblings for a donor. How blessed we are that his brother was a perfect match!

These forums are the BEST place to get support. The people here know what you are going through. The early days of diagnosis are definitely the most frustrating and confusing. People here can help you.

Good luck to you and God bless!!

Deb

[kyis]

I'm also confused as to when or why one would go straight to transplant.
I have a unrelated donor, but they want to start me on Vidaza only. I am worried because I am hypocellular, about 10-20% and I thought Vidaza lowers your cellularity? If so seems like my wc could go even lower.

[bailie]

Deb S and Whizbang,

Thank you. Right now this seems surrealistic for me. I have never had any health problems and feel great at this time. These decisions seem strange. I think most on this forum have had the similar feelings and know exactly what I am talking about. I do have the support system and realize that the transplant is a BIG decision, but I am also aware that Vidaza is not effective for long periods. The Dr. has referred to the "mini-transplant" which is being successfully performed for people my age (67). The results from the studies I have seen are very similar and might be my only choice when the time comes. I have a very good friend who will be going through this procedure in about 20 days.

[DanL]

Kyis,

The decision on whether to move straight to transplant or whether to watch and wait, or to do some bridging therapy and then transplant is very complex and individualized. The gaining, and current, direction seems to be that it is based on a very simple idea of maximizing life span while minimizing risk. (please forgive the blunt assessment)

The idea is that when a patient is at an IPSS score of intermediate 2 or higher, moving to transplant makes the most sense, as it maximizes survival, assuming the patient is a transplant eligible candidate. If you are IPSS-1 or lower, then it may make more sense to hold off as you may go many years before your disease progresses, unless you have other complicating factors that make transplant more urgent, such as higher risk chromosomal abnormalities, higher transfusion rates, etc.

Pre-transplant therapy has somewhat mixed results according to recent studies, but it seems that many transplant centers are using either Dacogen or Vidaza prior to transplant with the idea that they would like to "de-bulk" the disease burden and put your pre-transplant disease status close to nil. Conceptually this works as it should reduce relapse risk, but it may increase other risks related to transplant.

As for Vidaza with hypo-cellular marrow, there is frequently a dose-adjustment, but i think that is done after the first or second cycle if your marrow continues to be hypo-cellular.

Have you been tested to see whether other therapies, such as immunosuppression would make sense in your situation? lower marrow cellularity is commonly listed as one of the factors to make you more likely to respond to this treatment option.

I hope this helps.

[kyis]

Thanks Dan,
That does help.
I'm Ipss 1, but with blasts hovering around 9 I think I could be IPSS 2 in a heartbeat. My doctors biggest concern it this could take off to aml at any moment. And counts always continue to tick lower every month. With good hemoglobin (12.8) though I feel fine. I have the hla15 or something, which I'm told is good for cyclosporine/ immunosuppression treatment. ATG is questionable I guess. No chromo problems to date. I was told my cellularity is low, but not that low? (5-30% patchy). It was 20% about 3 years ago. I don't really fit mold, but does anyone with MDS. Age 52 now and half Asian and my Dad full Asian past from mds/aml 25 years ago.
I will question my dr. about dosage. So I have 4 dr. opinions 3 to vidaza and 1 to immunosuppression. Thanks again for the help and be healthy.

Happy Holidays to All!

[Lulu]

My sister is not a match and my docs have said that at present the risks of MUD transplant outweigh the benefit. I am in the UK though, and I get the impression they are way more cautious than in the US.

Have normal cytogenetics and am currently stable with only nutritional treatment. Blasts were 5% with 80% cellularity at last test, but this was during a brief relapse 18 months ago so may (or may not) have improved since then.

My doc said they might reconsider transplant if all my counts were badly affected or cytogenetics changed for the worse. Not sure I'd go for it even then though, have no caregiver, live in a tiny rented flat, and unless I keep working, no money.

[Kathy S]

Lulu,
When you say you are stabilized with nutrition, are you saying that you are supplementing with nutritionals or food or both?

[kris]

THis is a very personal decision that after much research and discussion with your healthcare team you approach carefully. Before a decision is made all the ODDS are presented. Sometimes the "watch and wait" is not such a bad idea with conservative therapy.
My husband did watch and wait for 4 years and then his counts dropped and he was transfusion dependent. Only then did he start Vidaza and had a great response...18 months!
Then looked at other options.....transplant was the last option available.
If we had any regrets it was that during our Vidaza phase we didn't start transplant evaluation and workup. From the time the Vidaza failed to transplant was 11 months and that was with two 10/10 sibling matches.Yes, our decisions caused some delays. Rick decided he wanted one more summer with the grandkids, wanted will and finical matters in order and then there are always hiccups. If we had started the process earlier and had it in our back pocket Rick would not have been so debilitated going into the process.
All this to say it is never to early to start the process.
Timing is everything and finding the right timing for you will be between you, your family and your medical team. Find the right match.
Rick has celebrated 2 years of life since transplant. It takes nearly a year or more to get back to baseline. Plan accordingly.
Hope this helps.

[bailie]

kris,

Congratulations and thank you for the optimistic outcome. Can you remember what Rick's numbers were while on Vidaza and did they drop off very rapidly toward the end? How old is Rick and what kind of a transplant?

[kris]

Baille, The future is different for everyone. Rick's numbers did drop dramatically. I believe he was in the range of Hgb 10, Plt 1117 WBC 2.8 ...but he was more fatigued, drawn and then everything started to change. I am not home so I don't have the exact numbers. He was back to his baseline before Vidaza. As quickly as Vidaza worked in 6-8 weeks...it stopped working. Rick was 60 at diagnosis, 66 at transplant, 10/10 allogenic transplant from his sister.

His attitude was wonderful though out.
Our motto: Plan for the worst..prepare for the best..trust in God, He will make it happen .
Today he still says if MDS returns tomorrow it was ALL worth it.
The road is not easy but it is the option/chance that may make for a long future. It is the only chance for cure.( Our hopes, wishes and plan)
Please let me know if you have other questions.
We feel so privileged to to be support for others.

[bailie]

Thank you Kris, my numbers are similar, but I am very aware that (as you suggest) everyone will travel their own road with this disease. My hematologist yesterday started talking more specifically about a BMT. We are getting prepared if the Vidaza doesn't turn this around. I am still early with this. I still have plenty of energy and quite healthy. Still golfing and walking. I am looking over my shoulders for newly appearing symptoms which might be gaining on me. I love your success story. We need as many of those as possible.

[Lulu]

When you say you are stabilized with nutrition, are you saying that you are supplementing with nutritionals or food or both?

I do both (see the other threads in alternative treatments). Since the MDS diagnosis I was found to have a malabsorption problem though, hence the good response to high dose vitamins. This may be very different to, say, someone whose MDS is a consequence of chemical damage or a genetic abnormality of the bone marrow.

Happy to share if you PM me, but don't want to derail this thread too much!

[johnwc]

I'm joining this thread. I'm John in Portland, Oregon, age 66 diagnosed with CMML on 12/1/13, and met last week with transplant doc at OHSU to begin looking for donor.
I'm approaching 1st base in this process. Beginning Dacogen in few weeks and transplant is in the future. Now while strong or when things turn?? Lots depends on strength of a donor match. Keep posting and I'll keep reading.
Blessings to all,,, JOHN

[vickinish]

I too have CMML. I have been on hydroxyurea for several years, no other treatment. What type of lab values do you have and what is leading to the decision to treat and seek transplant?

[johnwc]

Vickinish ... Your reply is interesting.
I've had three opinions on my labs and BMB report. All point to a BMT if I want to live. Whether that's this year or in five years, it's imminent. From what they say and what I've read, at some point drugs stop working.
So, the question that is unfolding is when?? While I'm healthy or when I get weaker.
My WBC count keeps increasing each month and is now at 34. Hemoglobin and platelets keep decreasing.
When I start the Dacogen we will see how effective it is. I'll be starting that within the next month and they have taken blood to analyze and look for a match.
I am in the deep learning and exploring phase of this. I'm happy to share anything...
JOHN

[vickinish]

Hi John. I was diagnosed with CMML in 2006, low platelet count prompted the BMB. Watch and wait for about three years resulted in my platelets climbing, white and red cells stable. When the platelets reached 900,000 I had another BMB (now they sort of waffled on the diagnosis but still think it is CMML) and I started the hydroxyurea. That knocked the platelets down quickly and did not affect the other cells much at all. Now on a very low dose and my labs are all stable.

I have no symptoms and, after the initial thought that my days were numbered, I feel fairly secure. But I do fear the transformation to AML that might occur. No siblings, age 68, I feel a stem cell transplant is not a good option. But it might be the only option should it come to that.

Let us know how you are doing, perhaps start a new thread. I will think good thoughts for you.

[johnwc]

Vicki,
I'm such a newbie at all this info, but I thought CMML was all about the White Blood Cells. How much have you researched this? It was a hematologist with the diagnosis, right?
J