Just got diagnosis a few days ago

[Amy Clark]

Hi Mark,
I am sorry to hear you picked up C. diff at the hospital. I hope that goes away soon.

I have been thinking about you and your questions. Those are tough questions. Individual patients are so…. different. Mutations play a big part. You are doing the right thing by gathering as much info as you can, medical and practical, before making your decision. Identical twins could go thorough the same transplant and have vastly different outcomes.

I wish it were more straightforward. Some people trade a life threatening disease such as AML or MDS for a chronic disease after a transplant like HVGD and are thankful, as some post-transplant affects are doable with a “regular” life. Some go through a transplant and are not happy with the “new normal.” Some patients don’t make it. Some patients chose to try a clinical trial of a less toxic nature and are still awaiting the outcomes. No medicine is claiming to offer a cure, but some clinical trial meds are showing anti-leukemic affects. Some patients skate through the treatments without a scratch, although these numbers are low from my research. (You were one of these, though, with your chemo!) No one can tell you how YOU will end up being specifically affected by any of these. However, mutations and other personal information can give you an idea of relapse rates somewhat. That would require research, if your doctor doesn’t know right away.

Gather the info, weight the pros and cons, and make the best decision for you at this point in your life. Don’t look back.

In case your stem cell doctor yesterday didn’t know to mention them, there are clinical trials available for AML patients who have completed induction and/or consolidation but who chose not to or cannot proceed to transplant. The LLS Clinical Trial Support Center can do the legwork for you in finding one or more you may qualify for. They are open M-F 9-9 EST. They also know about grants for co-pays and other medical expenses, and other resources. They can search clinical trialsbased on your area, mutation, places you are able to travel to, or other parameters. You might consider calling them. I did a “test call” for you just now and even learned that they will do the same for MDS patients and have grants for us as well. I had no idea… Here is the number: 1-800-955-4572.

Our own MDS site also has a listing of clinical trials, but since you are now an AML patient, the LLS organization (lls.org) likely has more for your particular situation.

Lastly, it can be daunting to do all of this alone. If you ever need someone to listen or mull over options or just to vent, please feel free to call. My husband (a former Ironman) and/or I (a former oncology nurse) would be more than willing to take the time to help you however we can from afar.
832-540-4214. God bless you. Amy

[Cheryl Snyder]

Mark,
By now you probably have a bit more info. I was diagnosed last sept 2019. after a routine blood test, I was sent for a bone marrow biopsy. I am 67 year old female, and was a regular cyclist …. while not a slow poke cyclist Not the strongest but did experience more and more fatigue…… I still ride as much as I can but not at the same level. I am being seen by a hematologist at Duke(NC). He is saying while I feel good and my blood levels don’t drop to much he suggested watch and wait. I feel asymptotic….. few weird issues, bruising and bleed easier than before.
This is a weird “syndrome” that, I think, effects everyone differently. And I am not sure all dr’s agree with each other. Continue to do what you can while you can and eat well and live your life. Sorry you’ve joined this mds club. And my drs have told me very little in what to expect. So a lot of online reading.
Cheryl

[Mark Topaz]

As it stands now, the best they can do for a transplant is what they call a mismatched donor, 8 of 10. They originally found a couple of people 9 of 10 but they were not available. After much cajoling, I was able to get my sister who lives overseas to send a swab, but she is not a match. The doctor who did my AML treatment ushered me towards the transplant doctor. I really want to get more information before pursuing this road. I want to stay alive but it sounds like there are many dangers and side effects associated with a transplant, not the least of which is death. Are there any other options for someone like me who developed AML from the MDS (which by the way, I think the fact that I was misdiagnosed several months before may have led to the AML). But are there any other options – transfusions, clinical trials, etc, or is transplant the only possible cure? And if so, how would I go about seeking them?

[Amy Clark]

Mark, there may be some other options. Call the LLS number below. I will repost the most important paragraph in case you didn’t see the above post from June 26, 2020. We will keep praying for you. Amy

In case your stem cell doctor yesterday didn’t know to mention them, there are clinical trials available for AML patients who have completed induction and/or consolidation but who chose not to or cannot proceed to transplant. The LLS Clinical Trial Support Center can do the legwork for you in finding one or more you may qualify for. They are open M-F 9-9 EST. They also know about grants for co-pays and other medical expenses, and other resources. They can search clinical trials based on your area, mutation, places you are able to travel to, or other parameters. You might consider calling them. I did a “test call” for you just now and even learned that they will do the same for MDS patients and have grants for us as well. I had no idea… Here is the number: 1-800-955-4572.

Our own MDS site also has a listing of clinical trials, but since you are now an AML patient, the LLS organization (lls.org) likely has more for your particular situation.

Lastly, it can be daunting to do all of this alone. If you ever need someone to listen or mull over options or just to vent, please feel free to call. My husband (a former Ironman) and/or I (a former oncology nurse) would be more than willing to take the time to help you however we can from afar.
832-540-4214. God bless you. Amy

[Heinz]

Hi Mark,
one alternative could be this:
My MDS turned after 19 years to sAML in December last year.
I am now on Vidaza, suffer one week from this treatment and recover three other weeks.
My WBC and NEUT are down so that I have to be very careful not to catch any infection.
The worst thing is, that now after 8 rounds of Vidaza treatments, I have to anticipate that Vidaza will loose its effect. From the 9’th month on, this will happen sooner or later.
There are not many treatment possibilities when that will happen.
Since I am 76 years old, SCT is no alternative any more.
In your age it still is.
I decided against SCT when it would have been possible. It was my wife who recommended me not to go that way. She had worked in hospital and had seen too many SCT patients with bad outcome.
It is a very difficult decision and unfortunately no one can really help you.
My very best wishes that you will find your way.
Heinz

[Mark Topaz]

I had spoken with someone through the Be the Match group a couple of days ago. She had a transplant 15 years ago and was going over what it was like. The problem is, 15 years ago in medical years is like 150 years ago. Things advance very quickly in medicine and what was the norm that long ago is very different now. For instance, I don’t think Vyxeos existed then, and that was what I got to put my AML into remission.

The doctors at the facility where I’m being treated have really been pushing the stem cell transplant and haven’t even mentioned any other options or possibilities. The more I hear about it, the more I think of the time when I went snorkeling at the Barrier Reef. They said don’t step on a stonefish. You won’t die but you’ll be in so much agony that you’ll wish you were dead.

I really hate the phrase, everyone is different when I ask a question. Yes, I’m sure everyone is, but they also must have an idea of the success rate for my age, my condition, a mismatched transplant, etc. Yes, everyone is different but they should be able to tell me the rates of cure, relapse, death, etc. Maybe Be The Match might be able to help.

[Kathy Stermer]

Every disease particulars are different but I can give you figures I was told by my physician whom I like and respect. I have advancing MDS heading to AML and have not responded to either treatment tried. My only choices at this point is transplant or clinical trial neither of which I have chosen to do. Statistics in my case are 50% success of transplant and 30% chance of relapse. That being said, success does not take into account any fallout from transplant side effects ie GVHD, any organ damage. It’s not like getting an oil change! I personally know someone who had a transplant at age 26 and was considered a success but lived 6 hrs on oxygen as GVHD took out his lungs and ended up with a double lung transplant now 4 yrs out and quality of life at age 35 still not great. I have been off all treatments since last September – no wish for a transplant or clinical trial and have to say, despite advancing disease my quality of life has been pretty darn good. It’s a personal choice for everyone but make sure to get good information and understanding of everything said before making a decision. Get another opinion if need be.

[Kathy Stermer]

Transplant Living Center | Mount Sinai – New York
https://www.mountsinai.org/locations/recanati-miller-transplant/services/transplant-living-center

For your friend in NY

Mark, try this as a resource for some help if you consider transplant

[Pat Lawson]

Kathy, are you receiving any transfusions?

[Kathy Stermer]

I go in and get labs done when I don’t feel good (of course I now know when my hgb low) and get blood mostly every 2-3 weeks. Went 18 months hoping for results from treatments which was stressful for me. Don’t do that anymore and just try to live. I’ve had the luxury of time to prepare for the inevitable and feels just right for me

[Mark Topaz]

Transplant in Oct. 2020. Did great for most of the time after, except for a bout with graft vs host in May 2021. Started having an issue with fluid in my eye last summer. My retina doctor sent me to an eye doctor who felt there was something going on in the eye. Had a brain MRI. Nothing. She sent me to Sloan Kettering. The opto there said AML likes to hide out and felt it could be what was going on. Sent me for a spinal tap. Found out Friday that’s what it is. AML hiding out in my eye. Blood work has been good. Donor cells 100%. Waiting to hear what they do now.

[Amy Clark]

Hi Mark, I am so sad to hear they found AML; that is certainly news no one wants to get. You have been through a lot. Hang on while they and you come up with a plan. I am glad you are at a COE. They often have ideas for hard cases that patients are unaware of. We are praying for you and are here for you. Call for any reason. Amy Clark 832-540-4214

[Mark Topaz]

I got treated at MSK for the AML they found in my spinal fluid, one eye and in my palate. After 3 and a half weeks in the hospital, they cleared my CNS of the leukemia. They also found a trace amount in my bone marrow, 0.7%. They’ve been giving me once a month azacytidine for 7 days and venetoclax pills for 14 days. I also am getting T-cells from my original donor. I got one round of that with a second one coming next week. They will give me 4 or 5 of those lymphocyte infusions. Right now, I’m in complete remission but my oncologist today told me that the leukemia doctors feel I should look towards a second transplant. I’m not sure how I feel about that. I’m in complete remission now so I don’t think I have to make any decision coming up but down the road I will. I don’t have any family so there’s no caretaker. I have friends but if they require 24 hour stays, I don’t have anyone who could do that. People have their own lives and jobs and families.

[Marjon Hatami]

Hi
My dad was diagnosed with MDS/MPN two years ago. Anyone can please share their experience with MD Andersons in Houston Texas? We live in California and it will be a trip for us but if it’s worth it, I will definitely take him there. Any help is appreciated.

[Author]

Posts