Hello! Yay, Im the first response.. My Mom, Beverly Sue, is a Survivor of not ONLY AML, but also a SCT. She was diagnosed with AML M1 in July 2006 (1 week after my brother's wedding). She got into remission easily. In April 2008 my mom relasped with AML M1. She had 4 rounds of chemotherapy and was back into remission. After getting into remission her SCT was put on hold while she dealt with a blood clot in her lung and candida infection on her lungs and liver. Finally on Aug. 2008 she recieved her SCT at Indiana University Hospital as her sister as her donor. The first 50 days went well. She was released from the hospital to the apartment on Day 11, and lived at the apartment for 1 month. Around Day 70 and Day 110 it was determined that she had GVHD of the GI and gut. She was put on high doses of steroids. Around Christmas she was well enough to go to dinner and shopping briefly. In January she began having weight loss, diarrea, and stomach cramping. Test were ran through Feb. but no answers except for possibly a little GVHD in her gut, and some ulcers, especially a large one near her colon. The Dr. could not see her colon due to the bleeding from the stomach lesions. The lesions were cortorized. On March 8th mom went in for a routine check up. At this point she was weak, down to 80's lbs, and very fatiqued, plus diarrea. A colonoscopy was performed and results were that CMV and GVHD had ruined her colon. That night at 8pm she went into emergency surgery and had her colon removed. It was a blessing that she made it through the surgery. The next 40 days were spent in the hospital. Reminding you she was on a vent after surgery and in ICU for a week. She gained 30 lbs of fluids, and a clot was found in her lungs. She was so thin that her skin on her back and arm broke in different places. She could not walk nor even lift her leg. BUT let me tell you she began physical therapy and began gaining a little strength and eating better. She is now in a rehab facitlity for several weeks. She now can walk with her walker, pretty good, and is eating much better. All 30lbs are off of her and she weighs 88lbs. She also has had the CMV and BK virus for sometime. WE are hoping tomorrows Dr. visit confirms that these are no longer an issue. Also she continues to take heparin for a blood clot in her lung.
I am here to tell YOU to have HOPE! With Hope, Faith, Family , Friends, Prayers, and the LLS support, Plus Good Dr.s you can get thru this..
Have I been scared? Yes
Have I at times questioned the odds of my mothers future? Yes
My main advice is: Lean on others for support, trust your Dr.s & if you do not then move onto the next hospital (my mom did this when she relasped and we are so thankful we Did), stay determined, push yourself to keep fighting even when the days seem unbearable and it seems that you wont make it (fight those negative thought), if your a caretaker take care of yourself (for ex. on a plane you put the mask on yourself first then the other person), find things that help you to relax, talk to people (even when you don't feel like answering the phone or having a visitor know that you need normalcy, ask for depression medication if you believe you are depressed, take advantage of the Social Worker there for you, ASK Questions (if you want to know ask), and remember that you are not Only a cancer patient, but a mom, dad, daughter, brother....
My Mom, like so many others here, has proved that you can make it! Yes, the past 3 years have been chaotic, stressful, tearful, and difficult, however, some things we have gained...My mom has the rest of her life.. I would much rather give up 3 years, than give up forever! hugs, nicole
Hi, I was diagnosed with AML M5, normal cytogenetics in May 2007. I had a SCT with a sibling donor in July the same year. I had GVHD Grade II for about a year and a half post-transplant. I am doing well, living in Hawaii with my family. My health has returned to normal and I am happy to be alive!!
Wow thank you for the contributions. Anymore please?
I wish you all many, many years in remission and hope it never, ever returns.
Just heard today that my mum has been out driving her car today. it's the first time in 7 months of having AML that she has done this, so good for her.
Love you mum
My daughter was diagnosed with AML m5 normal cytogenics in Aug 2008. (aged 19) She went through 1 round of induction chemo, and 2 rounds of consolidation chemo. Finished in Nov 08. We took her to MD Anderson last month to talk about a possible SCT. All docs concluded that we will wait and see. If she relapses, then SCT. She has been doing great, back to college and part time job, and happy to be growing hair again... hoping that SCT won't be needed.
As the treatment went ok, and my son enter remission right in first induction and the fact that he was 7k white cells in dx, the best option was to avoid transplant unless he relapse.
My son also has normal cytogenic. Keep the fait. I'm very glad that things go well with your daughter.
the best option was to avoid transplant unless he relapse.
Of course. I missed that it had been 3.5 years. I was focusing on the 18 months of chemo which seemed very long to me. But if it has brought about a remission of that long, it certainly was the right thing for him.
I missed this thread when it was originally posted (imagine that!!!) I was diagnosed with AML M5a in December, 2003 at age 31. My cytogenetics were t(9;11), which is on the more favorable end of the normal category. I had 4 rounds of HiDAC consolidation, and just passed 5 years in CR.
Hi everyone, all of your stories are so inspiring! I was diagnosed this past october (at the age of 23) with AML, inversion 16 and FLT3, I acheived remission after one round of induction, they originally wanted to do a transplant but decided i would be better off with consolidation chemotherapy and maintenance, I am actually about to begin my first round of maintenance therapy on monday!
Thanks to everybody for contributing to this thread. I'm so glad that you are beating this disease and doing well.
My mum got diagnosed October 2008, and is still in remission thank goodness.
So I will add her to this list as well.
She is 67 years old, had one induction and two consolidation rounds of chemo. No transplants
Long may you are live a happy and healthy life.