Entering phase 3. Did induction, 3 consolidations, and been in remission since after induction. Home from hospital since last crash of counts and have some IV antibiodics at home again cause of abcess but counts are going back up and feeling better. Made it through it all and have been determined intermediate category M1 with normal chromosomes for BMT and have decided to not proceed with BMT and hope and pray I stay in remission. I did find out I have 2 siblings so far that match for donor if I need one in the future. I have one more bm biopsy coming up in about a month and then blood tests doc said every week, which will then go to every month in time and so on. I am so glad to be done with all the treatment and want to enjoy my holidays but also scared of relapse. I just try not to think that it can or will happen, I know that is normal and will get easier in time.
Karen, the comforting part for me was always knowing I had that back-up plan in place. I, too, would tell my doctor i was very worried about relapse, but he was great at reassuring me, look we have a plan, and you have plenty of registry matches if this fails. In your case, having the sibling matches in your back pocket is even better! So as hard as it is to not always be thinking about the "what ifs", remember that you do have a safety net to fall into should relapse happen. But don't expect it to. Try to live a full life as normal, and enjoy every day (including the holidays!)
Hi: I'm 49 years old. I was 44 at the time of diagnosis. I live in South Florida and was treated here as well. How old are you? The worry about relapsing never goes away. With each little thing that goes wrong, you'll wonder if its a relapse. I can say that the worry is less and less. I think Tex has probably mentioned that too. I wish you the best of luck and hope that you stay in remission forever!
Softy was going through her chemo as I was going through my SCT. We both had m1 and I think she had normal cytos, as did I. If memory serves, the only difference was that I had the history MDS. Softy didn't.
Seemingly little things can be prove to be huge. Not to imply MDS is a little thing, but look at the difference it made in our course fo tx. Neat thing is we're both here despite our slightly differing paths.
I'm so glad to hear you're done with the treatments and can now concentrate on building back, growing hair, getting back to a more normal lifestyle. I think it's great for you to know you've got those sibling matches, it's your ace in the hole should you ever need it. I'm sure you're looking forward to the day when you get your "hall pass" from the doctor, meaning your blood counts have gotten back into the normal range and you can partake in more activities...just take it day by day and be patient with the process. It takes a while to recover from having your bone marrow slapped around over and over, and most folks won't necessarily understand, so you will have to be the one to say, "that's all I can do today". I found that when the energy ran out, it did so pretty abruptly and without much warning, like someone flipped a switch and then it was time to rest. I hope you get a bit stronger and blossom a bit more each day.
Thanks all of you. I found out my 1 sister is a match but my other isn't and my brother didn't do his test yet. My other brother was just diagnosed with prostate cancer so they won't test him. I guess 1 is good if I need it! It still is scary at times, but I'll take it day by day and be thankful for each day I have. It's been a long 6 months.