Has anyone been turned down for a BMT?
July 14, 2018 at 12:45 am #36852
If so, what were your options? Did you try other centers? What can a patient do if the drs. turn them down? I would deeply appreciate any/all advice!
TerezeJuly 15, 2018 at 10:08 am #36857
Dear Tereze, I know this is a difficult situation for you and I would recommend that you go to an MDS Center of Excellence for a second opinion. You should be very carefully assessed before undergoing any treatment. In your particular case, the doctor may feel that the risk of transplant outweighs you being treated with conventional therapy. A bone marrow transplant is not a benign treatment sometimes with less than 50% success rates. Benefits versus risk analysis should be done with any treatment. Following is a link to our Centers of Excellence worldwide https://www.mds-foundation.org/mds-centeres-of-excellence/. I hope this helps.July 15, 2018 at 11:33 am #36859
Thanks so much. I have read up thoroughly on the risks and understand them very well. But the fact is, there ARE no alternative therapies For me. I have chemo-relatedMDS with a P53 mutation. Statistically, Vidaza works an average of 5 months for people in my situation. So in my mind it is CERTAIN death vs. POSSIBLE death. Also: 20% mortality = 80% success. Also: I am robust and vigorous, both physically and emotionally. I will not willingly agree to ‘two more years’ if there is even the SLIMMEST chance of a more life.
I live in NYC so if Sinai turns me down, I can still try MSK , Weill-Cornell, etc. but itt would be hugely helpful if I knew ahead of time which Centers might be more aggressive /less conservative in their willingness to give patients like myself a chance for life.July 15, 2018 at 10:46 pm #36860
Why not ask in the transplant center rather than worry about something that might not be a problem? What are you exactly are you suffering from? Have you started any treatment?July 15, 2018 at 10:52 pm #36861
rar, I met with the transplant surgeon. That’s why I’m posting all these questions! It was like being on trial. I was Clarence Darrow for the defense. I advocated for myself for an hour and a half. I believe this is about numbers- they don’t want failures, it hurts their reputation. They framed it as an ethical
Issue, but we’re not really able to answer my challenges.
It occurred to me that MSK, which does many more of these surgeries than mt Sinai , would be less concerned about ‘success rates’
This is a cynical assessment but a friend of mine who works for Csncer Care said it was most likely the real
IssueJuly 16, 2018 at 4:06 pm #36864
Terese, my MDS is also chemo related, I have been on Vidaza since June 2017 and now in remission but I will continue with it since it is working for me. I chose not to do the BMT as with my age of 75, the risk is too great, I hope to have many more years ahead for me, I did look into the option of BMT and decided not to proceed, a lot depends on your age and health.July 16, 2018 at 11:28 pm #36865
also Terese, I was told that I could stay on Vidaza as long as it works for me, one patient had been on it for 7 years, BUT if the treatment quits working then I will have about 2 yrs to live with getting an infection or going to AML, so this is my choice and it works for me. Side effects are minimal./ I have already completed 14 cycles.July 16, 2018 at 11:46 pm #36866
Hi Cecile! I am so glad to hear that Vidaza is working for you so well! I had read that it was not very effective for people with chemo-induced MDS, so it is really encouraging to hear otherwise, a nd have some real-life examples to counter the statistics. And it’s great to hear the side effects are minimal.
I had my first cycle of Vidaza at the end of June, and I start my second cycle later this week. I have lots of lumps and bumps at the injection sites, but nothing bothersome. Of course one cycle is too soon to tell if it’s working, so we shall see.
I hope you’ll keep me posted about your experience with Vidaza. Remission sure would be nice. At the moment my white count is extremely low, and I’ve had Ann intestinal infection for 4 weeks and on two antibiotics for the last two weeks, so I haven’t really had a normal day in a month. The intestinal issue is painful and the antibiotics are so depleting… so it’s felt like ‘get me that transplant NOW!! So a remission would sure be welcome!!
Keep doing well with the Vidaza!July 17, 2018 at 11:39 am #36901
Yes, I have been turned down. As a renal transplant patient, they feel I would be too high of a risk. I also have the TP53 mutation but my MDS EB1 is not chemo related. I am looking at doing a clinical trial of Vidaza and another drug APR-246. It is my understanding that this trial is being conducted out of Cornell also.
Please keep me posted on your experienceJuly 17, 2018 at 3:03 pm #36902
Terese, I am in remission now for almost 3 months, I will have a BMB next month so will see how I am doing, I had such painful areas in the injection site that they have used my port every since and no problems at all, I also do a clinical trial twice a month. Thursday I do Vidaza and Friday and everyday next week, believe me I do everything I did before, only much slower, my energy level is not great so I just have to rest when I can, steps are hard for me, BUT I am usually at 6-8 estate sales every Sat. and also have a garden, (don’t do much in it with the heat) but I will enjoy everyday that I have left. Best of luck to you in how ever you go with treatment. I am going to KU Clinical Trial building in Shawnee Ks, a part of KU Hospital. They are great.July 23, 2018 at 9:40 am #36942
I think I know how you are feeling right now as I was in the exact same boat. After I was diagnosed, I was sent the same day to visit the BMT team for a consult. After round after round of questions, it was determined I didn’t fit the risk profile and I was not a good candidate at that time.
I was livid. Here I was a very fit and healthy male, in his early 50’s, who runs half-marathons and triathlons. Who better than to endure the trials of a transplant and its aftermath than someone who is still strong and capable? I had visions of a few weeks or so where I was “out of commission,” but then I’d quickly return to my normal work schedule (which involves flying every week across the country) and get back on the fitness trail. Who was this doctor to delay my only cure? He sentenced me, or so I thought, to a near term life of Watch and Wait… watching my disease and waiting for it to get bad. Why not nip it in the bud now before it got bad?
Then, I began to hang out in the forums for those who’ve undergone transplants. I began to talk to those brave souls who’ve endured and survived. Many of them continue to suffer. Would I be driving again within months of the Stem Cell Transplant (SCT)? Probably not! Would I be back on a plane and doing everything I was doing prior to the SCT? Most likely – no. Would I be the same? I determined that my new normal would look nothing like the life I have now. Yes, I’d be alive but I realized I didn’t need to push it until the time was right.
The doctor’s were right – the risk was too great, and it was too great for me and my health – not necessarily too great for their reputation and survival numbers.
Today, I’m non-symptomatic besides the occasional being out of breath when exerting myself too much. I finally realized to pause and be thankful for what I have right now- health. I’m able to do most things without problems. Why would I want to risk my current lifestyle and health? If/when I get worse, I’ll get my transplant.
I can wait, as hard – as frustrating as that is. I do want to survive and intend on being here for a long time – but for now, the best plan, for me, is to wait…. and live with the frustration.
I wish you luck as your MDS journey matures. Reach out if you need anything!July 24, 2018 at 2:48 pm #36960
I assume that you have low risk MDS in which case wait and watch gives the best longevity and quality of life. With low risk MDS average longevity can be more than 10 years with the option of a transplant should the risk increase. I had very high risk MDS witch has a 4% survival at three years with an expected longevity of 5 months. Transplant is a risky procedure with about a 30% cure rate. The rest either die or relapse. My transplant was 4 years ago. I was lucky and was cured of MDS. Not the end of story. At 3 months I had acute GVHD that hospitalized for 2 months with the doctor not expecting me to live. I recovered. At 2 years I came down with moderate cGVHD that has really impacted my quality of life. I am on numerous drugs, one of which costs $14,000 a month.
A transplant was the right decision for me because otherwise I would be pushing up daisies now. With all the different varieties of MDS a transplant decision is an individual call depending on health and type of MDS. I was 73 at time of transplant.
RayJuly 24, 2018 at 10:46 pm #36964
Hi Ray. Not sure whom you were addressing when you said ‘I assume you have low-risk MDS.’ If it was me, you’re wrong – I have high risk advanced MDS, my situation sounds similar to yours – transplant or daisies! So to speak.
I’m sorry to hear about the graft-vs-host disease… sounds brutal. I hope you get a break.
My quality of life at the moment is pretty compromised. I have no strength, even with red cell transfusions. I haven’t been able to do much. Sleep a lot. Dinners with friends have become taxing and arduous rather than fun. I’ve also kind of lost my personality – I feel shrunken down to my disease. I always had so many interests, and now I can’t focus on anything. I hope I start adjusting to my new reality!
I will have the transplant, if they’re willing to do it. As you explained, I don’t really see an alternative, vidaza doesn’t have a good track record for high-risk MDS.
How is daily life with GVHD? Are you able to do things that you enjoy?
Wishing you the best –
TerezeJuly 25, 2018 at 6:56 pm #36968
My most recent post was more directed at the poster before my last one. I was to 2 different transplant centers and saw 3 other oncologists. None of them questioned my suitability, All thought I needed a transplant ASAP. Here are the unasked criteria I felt they were looking at. It might help if you see how many you fit. Risk involved in transplant less than risk of My MDS, having a full time caregiver, healthy enough to withstand the rigors of transplant, have a matched donor, have blasts less than 5%, able to be less than 5 miles from transplant center for 3 months. Age not a factor. I was 73. They transplanted some in their 80’s.
I meet the criteria except for blasts. Mine were 14%, ANC .1. I was put on a clinical trial for a drug that treated my mutation. In 2 months blasts were 2%, blood levels unchanged. Doctor said all drugs are temporary, get transplant now. That happened less than 5 months after initial diagnosis.
GVHD is a problem. It affects eyes, mouth, throat, skin, and nervous system. These are painful and annoying. The major problem is drug side effects. The worst is the dizziness that makes me afraid of falling and keeps me from operating power tools. I used to enjoy woodworking and hiking. I am also weak that keeps me from exercising properly. I can live with GVHD because I don’t like the alternative.
What is the excuse the transplant center give for turning you down? Which of the criteria above do you not meet?
RayJuly 25, 2018 at 8:01 pm #36969
Hi Ray. Thanks for getting back to me. They wanted to turn me down because I have recurrent ovarian cancer – which is why I got MDS, all that chemo. They called it a ‘co-morbidity’ and apparently that is reason enough for them to turn s patient down. I argued vehemently with the dr. And frankly his reasoning was a little fishy. Certain death vs possible death, I said to him. A no-brainer. At one point I said, what is it you actually think might happen due to the ovarian cancer? He was rather flustered. ‘Well without white cells your cancer might overwhelm you in just weeks.’ ‘I already have no white cells’ I pointed out. Frankly I think they are concerned about their statistical success rates. I think my oncologist persuaded the panel that my OC was sluggish and very contained, not in any other organs, etc. they are asking for a PET scan which I think is reasonable. Of course nothing is straightforward- with my low white count, I got an intestinal infection which is proving very stubborn, and I can’t get a clean PET scan while I have the infection. So I have to clear up the infection and then have the PET scan, and I think they will do the transplant then. But still hoops to jump through.
I appreciate the dialogue with you – the hell with the exercise, you do what you can!
I’ll keep you posted… thanks again.
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