[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.

[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.

[Mark Topaz]

I am trying to set up a mixture of friends to help me, as I don’t have any spouse, siblings or children. This way it is not put on any one person but if I have a half dozen people who can each give me a few hours a week, I think I should be okay. Initially they told me I would need someone for 24 hours the first 2 weeks and that was problematic. I have a one bedroom apartment so no place for someone else to sleep, unless I bought a cot. Anyway, I’m hoping that the team effort approach will work as the burden is spread out among several people. I would suggest seeing if that’s something you can do. Not sure what you are referring to with chemo treatments. I was in the hospital 2 months when my MDS turned to AML. I’ve had 2 rounds of consolidation chemo since I got out to solidify my remission. The chemo before transplant is given after you are checked back into the hospital. If you need follow up visits after you are released, check and see if insurance will cover it. This is all stuff you should discuss with the social worker at the hospital. Good luck.

[Mark Topaz]

I have already had my AML treated and brought under control with Vyxeos. I need to cure the MDS because if not, I’m told that the AML will just come back.

[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.

[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?

[Mark Topaz]

Doctor’s appointment last week went well and they didn’t see any cancer cells. Had another BMB on Monday and awaiting the results from that and then they will schedule me for 2 rounds of chemo to consolidate the remission. I got a going away present leaving the hospital – C-Dif. Seems to be responding to antibiotics, which I have to take for a few more days. Speaking to the stem cell doctor on Thursday. That seems to be such an ordeal and without any family to take care of me, I don’t know if its something I can handle by myself. I just watched the video they sent and it seems like having someone to take care of you is of primary importance and impossible to go through a transplant if you don’t have that. Also, the video talks very little about what kind of life you can have if you do recover. Seems like you need to stay out of the sun, which would be great, as I live on the beach and spend my life outdoors.

Let me ask this. If I recover from the AML, how long could I live before the MDS turns into leukemia again? And second, is there a way to treat MDS, besides a transplant? Would love to hear from those who had the stem cell as to whether or not its worth it. Can you have your life back or are you basically surviving as an invalid?

[Mark Topaz]

I just got out of the hospital Tuesday after 2 months in. I had 2 rounds of Vyxeos and my blood levels shot up to normal over the weekend. At first they were rising in small increments but then climbed by leaps and bounds and they let me go home. I have a follow up appointment next Tuesday and then I imagine they will be scheduling another bone marrow biopsy. On July 2, they have me meeting with the doctor who handles Stem Cell Transplants. I am guessing this is good news that they are moving quickly in that direction, although it frightens the hell out of me. I only have one relative, a sister in another country, but I was told that there was a 91 to 99 percent chance of finding me a match. I don’t want to get my hopes up unless they are realistic, but when they started running tests on me to prepare me for the Stem Cell, like testing my heart, kidney and sinuses, I being optimistic for the first time. Everyone seemed to be amazed that I had no negative reactions to the two rounds of chemo, other than a minor fever the first couple of nights. I am in good shape otherwise and even had them bring an exercise bike into my room for me to ride every day. I have tried to stay off the internet and read as little as possible because every time I do, it brings me down and gets me depressed. I’m sticking to what my doctors say and avoiding the negative.

[Mark Topaz]

Still in the hospital and waiting for my blood levels to come up so they can release me. Then I come back for a BMB to see if the second Vyxeos treatment put me in remission. If so, then I believe I get 2 follow up chemo treatments.

I’m having an argument with my girlfriend. She thinks that when my MDS turned into AML, the MDS went away. The way I understand it, that’s not true.

[Mark Topaz]

Does you husband have the same thing as me, AML? The fact that he’s managed to stay alive for that long with the clinical trial is encouraging. I know nothing about how that even works. Can you give me some info on it? Is it difficult to get accepted as a patient? Has he had to stay in the hospital for all 14 months or is he doing it as an outpatient? What treatment did he have before going the trial route?

[Mark Topaz]

I am trying my best but its very difficult, especially now, where I cannot have any visitors. I really could use my friends now to keep my spirits up.

[Mark Topaz]

Had the first round of chemo and it did not put me into remission. Started 2nd round today, with dose one and second one to follow in two days. According to the head doctor treating my case, the chance of it working is 40%. The drug being used is Vyxeos. Evidently, if this second treatment doesn’t work, all that might be left is experimental treatment. I’m trying to stay hopeful but it doesn’t look good.

[Mark Topaz]

My MDS turned into AML. I’m in the hospital and getting the first of 3 chemotherapy treatments today. Supposed to be here for 4-6 weeks. They haven’t told me what happens after that but honestly, I’m not thinking that far ahead and I really don’t want to know. They’ve told me that because I’m young and in good shape and my heart is in good shape, that should help. I’m trying to manage my emotions and have been hearing from many friends, which is helpful, since I have no family. They say I’m going to lose all of my hair, which is my best feature. Oh, well, as long as I can get cured or go into remission, I don’t care. I’m trying to not have anxiety attacks, but frankly, I’m petrified. I’ve never been admitted to a hospital before. Worst thing that ever happened to me was a kidney stone and a broken arm when I was 15.

[Mark Topaz]

No concerts, plays or being in a crowd. I’m sure that will be great for my dating life. Pleased to meet you. Would you like to go out with me, just no place where there are any people.

I’ll see what I learn in a few days when I see this doctor. Meanwhile, I took a two block walk this afternoon and felt like I was going to have a heart attack. Trying to keep an open mind but I can’t imagine giving up everything that I love doing and being able to adapt to that, if that’s the case.

Can you travel or is getting on a plane or a ship out too?

[Mark Topaz]

Well, if everyone is different, then there’s no telling as to what I read will apply to my situation. Apples and oranges I suppose. You sound like one of the lucky ones. I hope to be as lucky as you are, although here’s a question. If MDS is incurable but leukemia IS curable, why would developing a curable disease be a bad thing?

I’m seeing one of the COE doctors next week. The other specialist whom I saw a few weeks ago and who gave me the diagnosis, is not on their radar, although I’m told he’s one of the premiere specialists in the country on blood diseases. I’ll see which one I like better although the COE doctor I’m seeing is probably close to retirement from what I understand. I need to do more research as to how they determine who is or isn’t one of their COE recommendations. As with everything in this world, it may be more of a political thing rather than a reflection on a doctor’s knowledge and ability.

I hate to say this, but reading up on this disease is not at all comforting. Rather, the more that I delve into investigating it, the more depressed and morbid I become. It doesn’t seem to be a situation where if you change such and such behavior or do this, that or the other thing, that’s its going to make any difference. Correct me if I’m wrong, but MDS is going to do what its going to do and there’s nothing in my control that can do anything about it. So, as the disease affects everyone differently, I’m sure the knowledge affects everyone differently, and the more I hear, the more I think I should go out and catch COVID19 and be done with it sooner rather than later.

Other than on this forum, where it seems there is little traffic or conversation, do they have support groups in the country where people meet up with each other? Obviously, not now, where we are all trapped at home, but in normal times?

So, that BMB wasn’t a one-time thing? Oh, great. That hurt and I was really sore for a few days afterwards. The two things which I’m thinking that are most upsetting to me, are 1 – I’m going to have to give up all of my activities, which aside from them being what my life is and where I get all of my enjoyment, its also the center of my social world. Almost all of my friends are the people that I play sports with and go out dancing with. Take away that, and I lose all of my enjoyment and my relationships. Then 2 – anything in which you need a support person, whether its taking you to doctor’s appointments or treatments, etc. I don’t have any family to rely on and if its imperative to have help with numerous things, I’m SOL. Its one thing if I have to ask a friend for an occasional favor, but not to the point where I’m going to need continuous assistance.

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