Just got diagnosis a few days ago
May 13, 2020 at 12:51 pm #50846
Mark, I feel for you being in the hospital and not allowed to have visitors. Keep your phone charged so you can have your friends nearby and now you have found a whole family of new friends here that are here for you. I have been dealing with this for 19 months with my husband. He was in a clinical trial for 14 of those months. I can tell you that if you have to go the clinical trial route the doctors there are very supportive and always on top of your care. I am marking my response to notify me of any replies in case you just want to vent. Just know you are not alone. God Bless and hang in there….we are all rooting for you!May 13, 2020 at 1:00 pm #50847
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?May 13, 2020 at 1:33 pm #50848
October 2018 he was diagnosed with High Risk MDS with excess blasts. His blasts were at 12%. Typical span of life is 9 months. The standard of care was Vidaza or Decitibine infusions but he did not want to just do standard of care. He wanted to go into a trial hoping to give him longer or at least if it didn’t work to maybe help in the future for better treatments for others that are stricken with this disease. I found a trial for patients that had been diagnosed but had not received any treatments before and he started in it within weeks of diagnosis. They gave him Vidaza 7 days a week (standard of care) and the trial part was him taking Venetaclax orally for 14 days. Venetaclax has been approved for AML and they are doing the trial to see if it works for high risk MDS. He responded to the treatment for 14 months with his blasts dropping down to 2% during that time. Unfortunately he quit responding to the treatment and they now have him on the other standard of care drug Decitibine. He has had 4 rounds so far and they don’t think he is responding. He is needing blood and platelet transfusions weekly so they did a biopsy and we are waiting for the results. They are thinking he is transitioning to AML. Once they have the results they are going to search out another trial. That is our hope the longer you can hang in there the more possibility that there will be a better treatment. There is another website lls.org that you can look up on line and they have contact info on there to get in touch with someone that will take all your info and inform you of any clinical trials that match for you. I am getting ready to take him for treatment right now so if you respond again I might not get right back to you until He has gone into the infusion center.May 13, 2020 at 5:19 pm #50849MichaelParticipant
Keep the faith Mark.
Best wishesMay 18, 2020 at 2:09 pm #50920emily59Participant
It’s certainly not ideal to go through this without a caretaker, but it’s possible. I went through chemo and a transplant on my own at 60. If it becomes necessary you can talk to your doctor about having outside help from visiting nurses and aides.May 26, 2020 at 10:00 pm #51023
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.May 27, 2020 at 8:36 pm #51026Amy ClarkParticipant
I am glad to hear from you. I was so sorry to read that you developed AML, but thankful you are receiving treatment and that you have your girlfriend to help you. We have been praying for you. And now I will pray for her too.
About your question, you are correct. But don’t lord it over her, the information out there can be very confusing. And she is likely trying to understand all of it for your sake. 🙂
The simple explanation is that MDS and AML are part of a continuum that moves you along largely based on the number of blasts found in your bone marrow and blood – over 20% and you have AML, under 20% and you have MDS. Kind of like getting renamed an executive chef after having been a sous chef. You didn’t “un-become” all of the things that make someone a sous chef, just added on more recognition of new skills and responsibility (and pay hopefully.) And… henceforth, you are known as an exec. chef, NOT a soul chef. Likewise, you will be known as Mark, an AML patient or an AML survivor, not Mark a MDS patient or MDS survivor. (We all know you have more skills than that medical description of yourself, like Mark the Hiker or Mark the Athlete, etc.etc., but we are talking hospital jargon here, so bear with me.)
The other part of this, aside from the blasts increasing, is that the mutations increase in number. Some mutations are only found in AML patients and aid the diagnosis. Some AML mutations “arise” from MDS mutations, according to medical researchers, while others develop parallel to the MDS mutations, according to different researchers. The main thing all AML-important mutations do is increase the blasts. These blasts crowd out your good cells and make it hard to produce proper blood. The type of mutations you have are your calling card for different drugs or drug trials. Typically you just add mutations as you move from MDS to AML.
Finally, depending on what she is reading, she may not realize the subtle difference between reading about AML de novo, which is AML all by itself, and secondary AML, which is what you have if you had MDS prior to the development of AML. AML de novo has different mutations than sAML, (also known as AML-MDC, or AML with myleodysplastic changes.)
I hope this helps and that it is a little clearer than mud.
Thank you for allowing us the insights of going through the process of treatment. Know that we are rooting for you and hoping the best for you, inside and out.
God bless you,
Amy ClarkMay 28, 2020 at 7:23 am #51027justa0Participant
I’ve been praying for you. I’m very happy to hear you have a girlfriend. I hope your blood counts increase and you get out of their. We both have biopsies soon to see if we are in remission. I’m praying for us both.May 28, 2020 at 1:19 pm #51029
I’m sure you are looking forward to getting out of the hospital. Please stay safe when you get home and keep us updated on how you’re doing. I hope Amy’s explanation helped you she explained it very well. Take care & God BlessJune 6, 2020 at 7:05 pm #51391Ian PalangioParticipant
Hi Mark – sorry to hear about your diagnosis. I’m 47 and was diagnosed with MDS about 3 years ago (and am also a Curler!). Because of the low Haemoglobin levels in my case I haven’t been able to do sustained cardio exercise – I used to be a long distance runner, marathons and long trail runs, mountain biking etc but can’t anymore. I retired from curling last year – I was on the Australian National Team for 19 years but couldn’t travel and compete at a world class level anymore. For exercise now it’s more about doing some weights at home, on the spin bike, walking the dog. I wish I had my fitness like I used to for sure. How the disease affects each person is different – some people have MDS that don’t require blood transfusions because their counts are slightly low, other people do because their counts are too low and are more impacted for physical activities.
If you eventually need a Bone Marrow Transplant yes a sibling is generally the first option to investigate for a donor – I have 2 siblings but neither were a match for me. There is an international database of 22.5 million possible donors – they will do a search on that database to try to find a match. I believe if you are a white male with European ancestry, there is an 85% chance of a match in the database. For me – there was no match with my siblings nor the database. We are going to use my daughter as my donor – who by definition is a half match to me and can be used as a donor.
As others have mentioned, keep reading and learning about MDS – you will feel better the more you learn about it. Another good site is https://www.aamds.org they have a lot of resources (articles, ebooks, videos, and regular webinars) to inform you and keep you up to date on any new developments in treatments etc.
IanJune 11, 2020 at 8:16 pm #51437
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.June 11, 2020 at 10:06 pm #51438MichaelParticipant
We all like hearing positive results like you have expressed. You’ve had a bit of a roller coaster ride from your first posting. I especially like your last sentence.
Best wishes and keep the faith.June 12, 2020 at 12:16 am #51439Amy ClarkParticipant
Mark, so glad to hear the good results so far! We are all rooting for you!
AmyJune 12, 2020 at 7:04 am #51676justa0Participant
Happy for you. Transplant is good thing. Still praying for you.June 23, 2020 at 10:54 pm #52239
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?
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