Just got diagnosis a few days ago
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Tagged: AML, clinical trials, MDS, mutations, sAML, transplant
- This topic has 56 replies, 16 voices, and was last updated 1 month, 1 week ago by Amy Clark.
March 30, 2020 at 11:38 pm #50489
I had a bone marrow biopsy a couple of months ago but the hematologist didn’t tell me what was wrong. She had me getting B12 shots. Then, the first week in March, I went to my GP for the shot and they took my blood. Two days later they called and told me both my red and white cell counts were low and I should get a transfusion. A couple of days later I went away for a week and when I got back, the hematologist sent me to another specialist. He told me I have MDS and that the reason the other doctor didn’t say so was because my blast level (which I’ve never heard of before) was low. When they had done the biopsy, they couldn’t get blood so they couldn’t tell if anything was wrong with my chromosomes. I have many questions, but I’ll limit them to a few. I’m 62 and in excellent shape. I do many physical activities, including tennis, volleyball, bike riding, curling, dancing, etc.
1 – Is this fatal?
2 – The hematologist spoke highly of the specialist that she sent me to but when I spoke to someone at the foundation, they said they never heard of him. How do I figure this out? One source is telling me that he’s one of the best in the country while the other is saying he’s not on their radar.
3 – I see a lot of the info speaks of caretakers. I’m single, never married, no children, a sister in another country. If having a caretaker is important, I’m SOL because I have nobody.
4 – How debilitating does this become? The day before I was told to get the transfusion, I was playing tennis and was getting winded after hitting 3 shots. Normally, I’ll play tennis in the morning for 2 hours, play volleyball or bike ride or walk a few miles in the afternoon and go dancing for hours at night. If I’m going to become an invalid with this disease, just shoot me now. I have no desire to live that way.
5. If I need a stem cell transplant, how does one find a match? I know relatives are the best possibilities, but my aunts and uncles are deceased and I don’t really know my cousins. Is it true that you have to be in the hospital for a month and then on a lot of drugs for a year afterwards?
6. I saw the specialist on March 20 and my next appointment in May 1. How long does the transfusion work for? That seems like a long time to wait, especially if he is going to done another biopsy.March 31, 2020 at 10:20 am #50495PATRICK CAMMARANOParticipant
Mark — you have a lot to learn. Start with the books the mds foundation will send you. Get a copy of that bone marrow biopsy. It should be several pages long with pictures and arrows point to blood samples. Remember the report will show what is not normal in your blood. Learn about your blast. When I read your blast were low this is good. The higher the blast the greater the problem. Can it be fatal? YES
Item 6 . If for some reason you need another BMB — Send it to two labs. I am sure your insurance company will a prove it. This BMB is very important. When you do you BMB you should have a fish test done which gets into your chromosomes. How long does a transfusion last? Very one is different. I have been living with MDS for 14 years. I just turned 82. Will MDS kill me maybe their are 14 other cancers that can also kill me. Should I worry about all of them? I have said enough. Don’t want to confuse you. JUST READ AND LEARNMarch 31, 2020 at 7:44 pm #50496
Thanks for replying. Here’s a couple of questions which you don’t touch upon. Will I still be able to keep working? Also, will I still be able to remain active? Playing sports, traveling, going out dancing, etc. Or will it be like it was before I got the transfusion, when I played tennis and got winded after hitting 3 balls in a row?March 31, 2020 at 8:41 pm #50497Rita KnopickParticipant
Contact the MDS Foundation and get a referral to a center of Excellence is my advise. My husband has MDS and we went to a center of Excellence and are very thankful that we did.April 1, 2020 at 7:12 am #50498
I am 73 y/o and was diagnosed with MDS in October of 2016. Like you I am active, I play golf 2x a week and am always working around the house. I don’t know where you are located but you should find a Center of Excellence… I use both The Moffitt Cancer Center in FL and Sloane Kettering in NY. Like you I started with low blasts (that’s good) and I was put on a Chemo regime that used a drug called Vidaza which is administered 5 days in a row every 28 days. It is an IV and after a few months of treatment I had a central port put in (minor surgery) to ease the burden on my veins. The infusion itself is pretty easy, takes less that 1 hour and had no side effects. Now after having 36 cycles of Vidaza my blood counts have plateaued at a low level but my body has adjusted so that I don’t feel any different, however my Blasts increased and a drug called Venetoclax ( a pill) was added to my Chemo regiment and I was put on and antibiotic, antiviral and antifungal (all pills) prophylactically to keep from getting any infections. My body continues to adjust to the counts and I feel well and am still active. What I am looking for from treatment is a reduction of my Blasts (under 5%) at which time I can consider a Bone Marrow Transplant, probably usings marrow from my sister. Perhaps that will happen in the next few months.April 1, 2020 at 12:39 pm #50535
I assume that at your age, you’re retired. I’m still working occasionally. Not full time but I’m a television production freelancer. Can I still work? It sounds like most of the people with this are much older than I am and were retired when this hit them.April 2, 2020 at 6:14 pm #50537
Mark.. I am older than you but I was diagnosed at 69 and started a chemo regimen a few months later. I was put on a drug called Vidaza. It is administered by IV 5 days a month every 28 days. It takes about 1 hour and there are no side effects. I have never had to compromise my lifestyle.. I am very active, I sail, golf, travel to Europe but just have to work around my treatment schedule. I don’t know where you live but I would recommend you find a Cancer Center of Excellence near you and talk to a specialist. I use 2 specialist, one in Florida and one in NY…. like multiple opinions. Have a good attitude and live your life.April 3, 2020 at 8:36 am #50538
Mark, I too am dealing with this disease which has many variations as there are people who have it. I just turned 62 and am being treated at a Center of Excellence currently doing supportive care only ie: get my labs checked when I feel I need to by listening to my body and get blood when low. They tell me the disease won’t kill me but an infection most likely will so I try to stay safe in that respect. COVID puts a whole new spin on that of course. As a nurse I know too much how this can go which is a blessing and a curse. Would be happy to send you my contact info if you feel a phone conversation of benefit as I’ve entered my second year of living with this. Have tried 2 treatments both without success and only supportive care my choice at this point. I value quality over quantity and am trying my best to live each day to the fullest.April 3, 2020 at 2:28 pm #50539
Thank you for the replies. Cliff, while sailing and golf sound nice, neither of them involve running, jumping and doing a lot of physical exertion. I’m trying to not get too depressed, but being stuck in the house alone for who knows how many more weeks or months, is certainly not helping. I’m hearing a lot of different possible outcomes, but none of them sound good. So, from what I understand, its basically an incurable disease, which depending on the person, will progress over time, with some people faster than others. The only possible cure is a stem cell transplant, which may or may not even work, and is just as likely to kill you as it is to cure you. Do I have this about right?April 4, 2020 at 7:04 am #50540
Mark – These are certainly challenging times for anyone especially this if us that are immune system compromised. Perhaps I’m am the ultimate optimist but I have refused to give in to having this disease control my life.. I keep up my lifestyle and try to keep a good attitude. You are right… this crappy disease is not curable without a stem cell transplant. After 3 1/2 years of treatments I am struggling with the same questions you are relative to a stem cell transplant, my concerns have focused on the impact of the more aggressive Chemo required, finding an appropriate match, being hospitalized in isolation for a month and, of course, the success rate. After having spent an inordinate amount of time speaking to people who have had SCT’s and talking to my specialist, I have become less anxious and more willing to think about it, but, only as my last resort which I’m told could be years from now. It appears that SCT are no nearly as bad as they used to be. The Chemo has side effects but appears to be mostly fatigue. The hospital stay seems to mostly be required to monitor for infections although I have spoken to some people who have had the procedure done as an outpatient. I happen to have a sibling that might be a good match, I won’t know until she’s tested, but I’m told there is rarely a problem finding a match in the “bank”. I’ll keep you posted as I move through the process. In the meantime, I have now changed to a new Chemo protocol which is a daily pill and a self administered sub-cutaneous shot 2x a day for 10 days a month. The goal is to lower my blasts below 5% so that I can explore other options including SCT.April 4, 2020 at 7:15 am #50541justa0Participant
Mark, the odds are a lot better than 50:50 for cure with a bone marrow transplant. You are petty close to having it about right, but you had to have noticed your age and how your flesh was different than when you were 20 years old. There is another part to this life besides running, jumping, and physical exertion. Your interaction with the people around you. The only difference between yesterday and today is the knowledge of your disease. You can redirect your motivation to those around you to give meaning and purpose to your life. All of our lives here on this earth are like vapor from a boiling pot, you see the vapor, then it’s gone. Whether you choose to treat or enjoy your remaining days is your decision. There is something greater than this physical life to pursue. COVID-19 does make life different.April 4, 2020 at 11:49 am #50542
I don’t know what you mean about “greater than physical” life. If you are talking religion, I don’t believe in any of that stuff that people delude themselves with because they’re afraid of death.
My interaction with people around me is based upon the activities that I participate in. Practically all of my interactions are based on the sports I play and going out listening to music and dancing. Take those away, and I’m left with my solitude and indoor hobbies.
It’s funny, but growing up poor, I tried to be frugal and since I didn’t work in an industry where I would get any kind of a pension, I did a good job saving for my old age, which I thought I would have an old age. My mom lived to be 95 and everyone said I would live a long life because of how active and healthy I was. So much for any of that. Well, one positive is at least I don’t have to stress about all of my investments plummeting as the market tanks.
I’m trying not to be too pessimistic, but if it came to that, how likely is it to find a donor match from a stranger? I have one sister, who lives in another country, whom I barely have any contact with. That’s it. And if one has to get the bone marrow transplant, what happens when you come home from the hospital, if you come home? Do you need to be taken care of? I love my cat but he is only good for emotional support.April 5, 2020 at 10:43 am #50544
Mark, these are all normal feelings and things I have thought about in relation to my life as well. It’s true that anyone who chooses to go through a transplant needs to have a caregiver who can make a commitment for an extended period of time. I have a good support system of family and friends but can’t imagine asking any of them to drop their life and attend to me if I was ever to choose the transplant route (which I’m not). The donor registry chances are good for a match for most. The statistics I’ve been given for transplant success is 60 percent chance of success and 40 percent chance of relapse. Disease or not, we all only have today and I’ve just chosen to do the best I can with what I’ve got to work with. Have to say though, trying to do this while self isolating is pretty lonely. Miss seeing and hugging my family and grandkids, being with others in general (those that are healthy) but as we’ve been told, “assume everyone is infected” right now.April 9, 2020 at 2:59 am #50551
Kathy, if you could send me your contact info, I would love to talk to you.
MarkApril 9, 2020 at 9:23 am #50559
Mark, send me an email @ email@example.com and we can arrange a time to chat.
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