AML relapse

michellewallace1984

I was diagnosed in March 2005, at the age of 21 with AML M5. I was 86% cancer in my bone marrow and was given a 10% chance to live. After a few rounds of chemo and a BMT, I was "healthy" again and went back to work in 2006. I worked for a few years as I regained my strength and all that. I finally went back to school (college) and graduated with an AA. I also became an EMT and volunteered with my local fire department. I was living the life of a 20 something and had no worries. I wasn't scared that the cancer would come back at all, in fact it didn't really cross my mind except when people would ask me. In March 2012, just about 7 years to the day, I relapsed. I think my oncologist was more upset than I was. I accepted the diagnosis and figured, hey I've done this before, it'll be just like last time. I didn't have much sickness from chemo or anything, I think I was so sick to begin with that the chemo was actually making me better. Anyway, the chemo from this relapse made me so sick and then in May 2012 I had 3 strokes. So much for thinking things would be "easy" like last time. With all these obstacles I was dealing with, I still kept up the fight. I am now a year past my relapse and still having a lot of outpatient treatment. I have had two DLI's (donor lymphocyte infusions) that didn't seem to work too well, I was also put on interferon injections that didn't work either. I am now on Vidaza, 7 days on 28 off, and this just started on May 1, 2013. I am getting through this in the best way I can, with so many negative side effects from all my meds, it makes things a little difficult. I haven't even been able to talk to anyone around my age, 20s-30s that has been though this also. I am hoping that I can have a little support from some fellow fighters/survivors. My friends and family are great and help me out a lot when needed, but it's not the same and they just don't understand like a fellow patient does.

Dee71159

AML sucks! My husband has

AML sucks! My husband has been battling it since October 2011. I will keep you in our family's prayers! You are a strong woman and I hope for a healing for you!

Take care!

susancm

20's caregiver for blast crisis CML patient - might relate

Ugh, so sorry to read about your relapse. I've been caregiving for my mom since 2002 - she was diagnosed when I was 17 and she was 37. Definitely has been hard for both of us. She had CML that went into blast crisis, followed by a transplant in 2005. She hasn't had a systemic relapse, but has chloromas (extramedullary tumors) that have now engulfed one breast. She was put on some AML chemo regimens  (chloromas are difficult to penetrate, so oral drugs and immune therapies like DLI are totally out). Ara-C didn't seem to do a thing for her, but most recently "G-CLAM" - it has other acronyms, but consists of gcsf injections, cladribine, ara-c, and mitoxantrone ("mytoe zan tron") - was a help. It worked really well, but then when her blood counts recovered.. so did the cancer cells, and because her tumors are visible, we could tell right away. (we both were so hopeful and impressed with just how much it had helped, and then suddenly it was like, "Are you freaking kidding me?!!!") Also, re fatigue, it seems harder and harder for healthy blood cells and marrow to recover after every hit from these drugs. In fact, if not for that, my mom really liked the pain relief she got from that G-CLAM "seafood cocktail" and would gladly do another round. Don't know if that regimen is appropriate for your situation (it is extremely aggressive), but might be worth looking into.

Regardless, you are definitely not alone - being a caregiver for my entire adult life so far (the only caregiver, but that's another story) for a younger mom who people used to say looked more like a sister has totally altered my life in countless ways and it's been hard to talk to friends and have them "get it." I barely know what it normally feels like to be in one's 20's. I'm too exhausted from running to appointments, acting as a secretary for coordinating supply deliveries and home nurse visits for home infusion and wound care, and also the sheer emotional devastation of it all. I never date or meet people and rarely feel like even trying with my appearance - other than to look like I'm competent enough to maintain hygiene. I feel too tired to shower most days, and I'm not even the patient! I don't know if I could even get up every day if I was in my mom's shoes, but I think my little brother keeps her going. She pushed through all these years to watch him grow up - he was six when she was diagnosed, and is in high school now - but she still feels like leaving him any time will be too soon. I hope you have a good motivator to help you along, and are also able to have some time to rest. I myself am learning to be patient with the fact that I can't do all the caregiving things I should, but need to ask for help so I can get some rest too. 

I don't know how much helps, but I wish you all the best! and am happy to talk when able if it does help.