AML M5 - just diagnosed

Butterflys_Bridge

msbettyliz said:

So good to hear positive results!
March 12, 2012 - I am typing this as I sit in my husband's hospital room day 34. We are at Northwestern in Chicago. Hubby had MDS that turned to AML, so a little different course of treatment and unfortunatly not as good odds but odds schmodds, we can do this. First round of chemo did not get all the leukemia,so we are on second much more intense. Bad fevers, hands swollen and blistered...one thing we have learned is everyone is different. It is bittersweet that so many reach out to each other for support. I have been looking at different sites and posts and it can be exhausting to try to find someone that seems to be close to your situation. Thank you for postng and especially your comment about attitude. God bless you and everyone seeking the support of others. Godspeed to all.

Betty - wife of Scott

www.sleist.blogspot.com

I too had MDS. I am a 51
I too had MDS. I am a 51 year old female who was diagnosed with MDS in Feb-10. In July-10 had a bone marrow transplant as I had high risk MDS having blood transfusions every week for 6 months. The transplant went well and after 5 weeks I went home. Had no graft vs. host, had minor complications, was hospitalized once for reaction to antibiotic was affecting my oxygen level. So, in March of this year my blood work reveal very low white cell count after a month of monitoring and bone marrow biopsy, I now have AML. I know what you are going through with your husband. But somehow faith brings us through. I decided to try the vidaza treatment for now. I am on day 5 of this treatment. After going through the transplant and being hospitalized and away from my family I found it difficult to go back for 30 days. My physicians at Penn are very supportive and my family and friends are with me all the way. It's difficult to make decisions and be at peace with the ones you make. If I can be of any help to you and your husband, please let me know. This is a journey .... a walk off the main path .... but somehow we will get back on track through faith and love. Thank you for listening.....

shesuccess

chad148 said:

Diagnosed June of 2010 with M5 also
Hey there, was diagnosed with leukemia last June and received 5 rounds of chemo, the majority of the time in Vanderbilt Children's Hospital's immune compromised unit. Since the induction therapy all of my bone marrow biopsies and lumbar punctures came back negative for leukemia but found out there was a fairly large sized chloroma (mass of leukemia cells) in my brain before receiving what I thought was my fifth and last round of chemo. I have gotten brain surgery and radiation treatments on my brain which luckily, AML responds extremely well to. My brain now looks as if there were no mass there. After the more direct radiation toward the brain I went into preparation for an unrelated BMT receiving the induction chemo (its some pretty rough stuff) and starting total body irradiation before undergoing the transplant. The transplant itself is actually not near as bad as people make it out to be. My bone marrow is currently 100% donor and I am on day +48 of the transplant. Still a long way to go before things are even close to normal again. The #1 cure for cancer is most definitely your attitude. I have seen many cancer patients come and go out of the hospital and the ones with the most positive outlook do amazing, just give it your 100% and there is no negative outcome. I've always been told to live as regular as possible while going through treatments, get up and keep motivated and don't look at yourself any different than before. WATER WATER WATER. Water does nothing but help, plus, the less fluids hanging on your IV pole the better. You would be surprised how much of a difference the small things you wouldn't expect to help, actually do. I'm currently staying in the area around the hospital to be close by until day +100 of the transplant and have been doing well since. To be honest, as long as someone makes it through all of this, it changes your outlook on life so much I feel blessed for it to have happened. I've never had happier days in my life. Oh and I highly recommend suggesting a pet scan to look for any masses, M5 is known to commonly have them, the leukemia tends to hide in the brain (the "blood-brain" barrier in your head keeps the chemo from getting to the brain well) and the testicles (difficult for chemo to reach here also). I know I'm young but I hope everything I've said helps out and that the big C word isn't so bad afterall. Just remember, things are only as bad as your attitude! Check out the group "cheering for chad" on facebook if you're interested in looking in more detail. "percentages mean nothing, this is you, there is one you, you are ether 0% or 100%, there is no 65%"

Diagnosed June 2010
Chas148,
Thank you so much for those inspiring words!! I am in the valley of decision. BMT or not! I just had my 4th BMB, I am in remission, but the doc want to do the BMT, they say I have an aggressive AML. Thank you again! I will keep my Head up!

shesuccess

barbarellajc said:

AML M5 response
Hi Chadd,

I was 60 yrs old when I was diagnosed with AML M5 in July 2008. I stayed in the hospital for 28 days, got induction chemo, then consolidation, was sent home after 28 days and again started 4 more rounds of chemo ( from Sept. thru Dec).Doctors claimed that I reacted well to the chemo and was in full remission for my system to accept a bone marrow transplant. A matched sibling (brother) donated his stem cells. It was performed in April 2009. In 30 days, engraftment was at 96%...in 60 days, it was at 99%. It was painful while it was engrafting. Pain in my joints was unbearable...could hardly walk.But now, I survived the whole ordeal. My brother's stem cells started liking his new home and kicked my sick stem cells out.I was off medication almost a year after transplant.

Being 60 at that time, they were hesitant in having me go through a BMT. I joined the clinical trial thinking to myself what I had to lose...nothing.

As of May 13, 2011, I was declared CURED by my doctors...not just in remission but they used the word CURED. They told me that they DO NOT use the word CURED loosely especially in situations like AML...but I was. They said that it was safe enough to say as it was 3 years past my diagnosis already and I had no major issues. I did get GvHd but it was not so bad. I remember my BMT doctor telling me while I was signing the papers before the transplant that "the success of this procedure is all about attitude." I never forgot those words.

With great doctors, "attitude", lots of hope,faith and prayers, I am still here. Just to add that during this whole process of chemo, I kept doing my exercises just before the chemo kicked in and made me weak. I did long walks and lifted light weights while in bed...just anything to keep me moving and not be sedentary.

Let me know if you have any questions. Don't let this thing get you down. You can fight it. Miracles happen every day and I am one.

AML M5 response
Barbarellajc,

Thank you, Thank you, Your story has touched my heart! I am so happy I found this board. Sometimes you feel alone, but I know I'm not. For God said he would never leave! You have inspired me and I know I was lead to your post.

MichelleJohns0574

Thank you!!

My husband was dx in Jan. 2013 with AML M5 and tested positive for flt ITD.  It is really good to hear that AML M5 is treatable/curable.  Thank you to everyone that has shared their stories!