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AML M5 - just diagnosed

Chadd25's picture
Chadd25
Posts: 2
Joined: Aug 2010

I am a 37 year old father of 2 who was diagnosed 7 days ago with AML M5. I am on day 6 of induction therapy (3 + 7).
It has been a difficult week for my wife and I. I am looking for any positive success stories out there for people that have survived AML M5.

Beaver79's picture
Beaver79
Posts: 4
Joined: May 2010

Sorry to hear that you've joined the club. I was diagnosed with AML M5 last 8\09. I went thru the induction etc, entered remission and went back to work in January. There were good days, and bad days, but maintaining PMA, prayer, and support from family and friends got me thru. I hope your chromozone test come thru good. Without doubt, this is a serious thing, but people do get thru it. Your age will help (I'm 58). Smiles from you and your wife will help each other. Make sure you communicate a lot with the doctors. Hopefully you have an open and supportive staff. Mine here in Oregon have been great.

Once again, work on keeping the attitude positive.

Chadd25's picture
Chadd25
Posts: 2
Joined: Aug 2010

Thank you for your positive story. I too am fortunate to have a strong wife and support system. Did you or are you pursuing a transplant or is that still up in the air?
I am on day 7 of induction and feel great today. Mostly mental knowing this initial induction is almost done. Feels great to have these positive thoughts! No hair loss yet. When did u see your loss begin? Did you do the (3+7) induction?

Beaver79's picture
Beaver79
Posts: 4
Joined: May 2010

I had the induction plus 4. Unfortunatly, each time I got to feeling better, it was time to go back in. I always felt fine during the chemo, but when it reached full strength in 10-14 days, and when the neutropeno shots were given to boost wbc, then I got down for 2-3 days. Still, overall I was able to maintain and progress. I started to loose hair during the 2nd treatment, and decided to be rid of it all. Actually feels good now, but the barber disagrees.

I am currently waiting for a donor for an unrelated BMT. Lots of preparation for that as it means 6 wks of hospital stay, and 3 months living near the center in case of GVHD. But, when this passes, I'm hoping to start the big vacation.

All things have a value, and I've been meeting a lot of great people and getting closer to those who care.

Stay with it.

mikeandme
Posts: 1
Joined: Aug 2010

Hi my husband has been through the 7 days of chemo, had the second bone marrow biopsy which we heard today was clean!!! We are very excited but still in the dark about the next steps. The docs are going to have a mtg withus tomorrow to discuss the game plan. My husband is 64 and they said he definitely needs a stem cell transplant because he has some genetic issues with his leukemia cells. Luckily, he has 5 siblings still alive and they are all willing to be donors. Just wondering what anyone has heard about the whole transplant process. We heard he has to be in the hospital for about a month and that there is always a chance of the graft being rejected. Do you know very much about the transplant process?
Thanks. Oh - he had a bad reaction to an antibiotic and has a rash all over his body... very uncomfortable!!!

justaharleygirl
Posts: 3
Joined: Aug 2010

Hi Chadd and Mikeandme ! This is justaharleygirl .. well my real name is Connie and my husbands name is Bruce. I am 45 years of age and I was diagnosed with AML on July 8th and admitted into the hospital here in Rockford Illinois at Swedish American on July 12th. I went through the induction 3 pushes , 7 bags of chemo. My marrow was tested after the second week and I too am clean ! Also retested the day of coming home and Clean! Praise God! Then i developed Aspergillus in my lungs. I am on VFEND for this and had many many iv bags hung of different antibiotics. I also had high high temps and was not able to go home until they were under control. I had a couple of biopsies done.. well many actually .. 2 bronchoscopies done .. one of which they took 9 pieces of my lung. That was to diagnose the Aspergillus. Then i had biopsies done on my arm and leg as i developed a rash. They diagnosed that as Sweet Syndrome and was treated with Prednisone. I went home on Aug 12th. I currently am awaiting word on whether my brother in Canada is a possible match for donar. If he is i will be going to Madison, WI to have the transplant done. If not i guess i will be going back into Swedish American for consolodation Chemo should be in a week if no other problems develop. I am very confused, frightened, and sometimes just unsure as to what to do. They explain to you all the risks as with everything meds etc. They told me under consult in Madison that there is a chance of getting GVHD and dying ... That is scary. But to me if i don't do anything this could come back and kill me anyway . I must just keep positive and put my faith in God and go for it . There are risks with everything. There was risks when they placed my hickman catheter in (not a pretty place the doc put it one inch from my nipple on my right breast) Very painful ! they told me during surgery that my lungs could collapse. They told me on the first bronchoscopy as my platlets were low that i could bleed to death. So there you go that is the way i am thinking. Its hard though and its very trying on my husband and myself. I get very emotional at times. I am going to be keeping you and your family's in my prayers and as of now i am home for the next two weeks. I am happy you are here because Lord knows i could use the support too. I only have the one surviving brother my older brother passed away two years ago. God Bless you and lets all keep in touch. You can email me anytime as well. chuckles2006@att.net is my email address.

also mikeandme there is alot of info on the www.marrow.org site that the leukemia and lymphoma people gave me . I too am worried about the GVHD but i will tell you and this is what i read .. there is less chance of rejection among close matched siblings. Keep the faith !!!!! and i will try to as well. God Bless you ...

mom2010
Posts: 2
Joined: Sep 2010

I'm so sorry to hear of your diagnosis. I pray you will stay strong, and keep up the fight throught the next few months during treatment! My daughter ws diagnosed with AML-M5, (translocation of chromosome #8, and no FLT3.) She was 6 months of age at the time od diagnosis in February of 2008. She underwent 5 rounds of chemotherapy, no BMT. It took 6 months to complete the 5 rounds (I believe the protocal has not changed since then according to her Oncologist). After the 6 months, she left the hospital and has never been inpatient since! Her blood work has been perfect ever since!

I know your going through so much, but keep positive and optimistic. Do everything you can do to stay healthy throught treatment. I feel that my daughter had a great chance of beating the disease by staying right on time with the treatment course by keeping any ill people far away from her. Even staff, they would try to wear masks in her room when they were sick, and I would send them out a request a new nurse for the day. We also limited her visitors, only Grandmas and grandpa could visit. It was really hard to do, but I feel it really gave her the best possiable chance. Whats 6 months compaired to the rest of her life? We also sanitized EVERYTHING, and made everyone wash their hands before entering her room. I saw so many patients catch some sort of outside sickness and were unable to start treatment on time, and that only gives the disease more time to return :( So that would be my little advice to help you combat this disease.

I wish you the very best of luck during your treatment, and for a cancer free future with your beautiful family! You can beat it!! Odds are getting better for AML patients, even without BMT!

mom2010
Posts: 2
Joined: Sep 2010

I'm so sorry to hear of your diagnosis. I pray you will stay strong, and keep up the fight throught the next few months during treatment! My daughter ws diagnosed with AML-M5, (translocation of chromosome #8, and no FLT3.) She was 6 months of age at the time od diagnosis in February of 2008. She underwent 5 rounds of chemotherapy, no BMT. It took 6 months to complete the 5 rounds (I believe the protocal has not changed since then according to her Oncologist). After the 6 months, she left the hospital and has never been inpatient since! Her blood work has been perfect ever since!

I know your going through so much, but keep positive and optimistic. Do everything you can do to stay healthy throught treatment. I feel that my daughter had a great chance of beating the disease by staying right on time with the treatment course by keeping any ill people far away from her. Even staff, they would try to wear masks in her room when they were sick, and I would send them out a request a new nurse for the day. We also limited her visitors, only Grandmas and grandpa could visit. It was really hard to do, but I feel it really gave her the best possiable chance. Whats 6 months compaired to the rest of her life? We also sanitized EVERYTHING, and made everyone wash their hands before entering her room. I saw so many patients catch some sort of outside sickness and were unable to start treatment on time, and that only gives the disease more time to return :( So that would be my little advice to help you combat this disease.

I wish you the very best of luck during your treatment, and for a cancer free future with your beautiful family! You can beat it!! Odds are getting better for AML patients, even without BMT!

farahi's picture
farahi
Posts: 23
Joined: Oct 2009

Hi, sorry to hear about your dx.I was dx with AML M5 with FLT3 mutation on july 17,2009. I was too sick to get chemo so they gave me blood, plts and drugs to lower my wbc count for about a week then we did induction with danorubicin and saitarabin (sorry about the spelling) 3 & 7, 24 hrs a day, and my BM biopsy came back positive so we did induction again and this time BM came clean I spent 70 days in the hospital that time, then we did 3 consolidation therapy (they couldnt give me my last consolidation chemo because i was having problems with my plts and was having nose bleeds that lasted 8 or more hrs and some bleeding in my brain). I got my last chemo on may 2010 and now im just taking a experimental drug for AML with FLT3 mutation (i have being on it since my first induction) and now my blood counts are normal, i have hair again and next week i will be celebrating my 30th bday and 1yr remission!!

It is a hard road but with family and a positive mind is posible!I will be praying for you and your family.

vabell52's picture
vabell52
Posts: 11
Joined: Sep 2010

Hi Farahi

May I ask what experimental drug you are taking? And congrats on your remission! I have AML 2 (dx May 2010). Sounds as if it only took 3-4 months for your hair to come back? I appreciate your response.
Hope your 30th was grand,
Julia

farahi's picture
farahi
Posts: 23
Joined: Oct 2009

Sorry about your dx! Yes my hair grew really fast about 4 weeks after it fell it was growing again and with the rest of my chemo i didnt loose it all!!! My dr is amaze of how much hair i have and how fast, he tells everybody that he cant belive how fast my hair is growing :)
About my study drug im taking Midostaurin (we will not know if it is the reall thing until the end of the study bcuz is a blind study, but it make me sick so my dr and reaserch nurse suspect is the real deal) I took it for 14 days after every chemo and now i have to do 12 cicles of 28 days.
And yes my 30 bday was great!!

Good luck!!
Farah

BigDave11's picture
BigDave11
Posts: 1
Joined: Oct 2010

I am a 50 year old male from Cincinnati, Ohio and just found out I have
AML. I am having so many emotions running through my mind right now I just can't
process this! Should I seek additional opinions from other oncologist? My Dr. is very well
thought of by her field. She got really irritated with me when I told her I was going to get other opinions. She says I shouldnt waste the time and has a "aggressive" treatment plan she wants to get started with now! What should I do?????

vabell52's picture
vabell52
Posts: 11
Joined: Sep 2010

Dave,

It's totally normal to feel overwhelmed. I too am from the Cincy area, being treated in Cincinnati. I was diagnosed on May 20, 2010. I was told 20% chance to live 6 months if no treatment. Without any second opinion, I said start the chemo now! However I knew immediately I trusted my Dr. and his staff. Rely on your instincts. AML is very progressive, so be aware. I can tell you I was put in 100% remission after 9 weeks. I am still in remission and just completed my 4th and last round of chemo. You probably will go through induction therapy which consists of staying in the hospital while receiving chemo. I was in 27 days during induction. A month later consolidation therapy started; this consists of 5 days in hospital with 2 bags of chemo given 12 hours apart. I did this 3 more times, a month apart. You will most likely feel fine during chemo; they have so many drugs now to combat the nausea and adverse effects. The days following are the toughest. It's totally normal to feel exhausted during this time as your counts are very low. You will have blood drawn daily while hospitalized to test your counts. Once the counts come up, you will feel better and almost normal. Even out of the hospital you will probably go to a clinic for blood testing. Blood transfusions and platelets are given if necessary.

I know this is a lot of info, but want to make you aware of the process. You are not alone! A lot of us have gone through this, and in my opinion, talking with fellow leukies helps so much. You will meet so many wonderful people on this journey. Hopefully we will meet.
Trust in your body and please keep posting. Feel free to email me. vabell52@yahoo.com
Julia

5

chad148
Posts: 1
Joined: Apr 2011

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%"

vabell52's picture
vabell52
Posts: 11
Joined: Sep 2010

Hi Chad,

Your wisdom and attitude is FAR beyond your years. It's very rare to find someone so young with the insight you express. I totally agree,' live life as much as normal', and I also found that during my treatment I had some of the happiest days; having never felt so blessed.
I applaud you, young man! I will be praying for you and your continued improvement. I have no doubt you will join the club--I kicked leukemia's butt!!!
I will hit you up on FB too!
blessings,
Julia

vabell52's picture
vabell52
Posts: 11
Joined: Sep 2010

Hi Chad,

Your wisdom and attitude is FAR beyond your years. It's very rare to find someone so young with the insight you express. I totally agree,' live life as much as normal', and I also found that during my treatment I had some of the happiest days; having never felt so blessed.
I applaud you, young man! I will be praying for you and your continued improvement. I have no doubt you will join the club--I kicked leukemia's butt!!!
I will hit you up on FB too!
blessings,
Julia

shesuccess
Posts: 2
Joined: May 2012

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!

madmom66
Posts: 2
Joined: Apr 2011

my son is 5months out of transplant. he was diagnosed june 16 2010, and spent most of the next 6 months in the hospital. he was diagnosed with AML M7, he was only 8 at the time. but, this is another one of those "less favorable" mutations. He never went into remission, after 5 rounds of chemo the cancer was down to under 20% in his bone marrow and we went forward with transplant. his frat twin was 10match. transplant is different for everyone. the pretransplant chemo (cyto-reduction) was brutal, and music, prayers, cleaniness, and laughter , and a kick butt attitude is what got us through. Simplify your life now and let your family cheer you on and make you laugh. Always, look for other opinions, we changed hospitals after we failed induction. we continued to reach out to other specialists, with the FULL cooperation of our current doctors. We are being treated at MSKCC, and i must say these doctors make miracles happen. look for clinical trials that offer aggressive treatment. AML is crazy because once diagnosed there is no time to think about anything. stay healthy through chemo, i agree be a germaphobe, cook all your own food.
also, if you do opt for transplant, find a hospital that does ALOT of them, it is important that the medical staff be familiar with all complications and know how to act quickly. also, dont expect doctors to say anything positive, i have sat through so many horrific meetings with leukimia and transplant docs. just because the stats are not as good for aml patients doesnt mean you arent going to be cured. Get going, believe it and you will make it happen. i never thought i would get my boy home, but we are home 5 months, mild gvhd, but went to baseball practice this week (even though his medi-port is still accessed) Joy and amazing thanks.

kire
Posts: 1
Joined: Dec 2011

My sister has aml m5 :( she is a doctor. she is a specialist.....

i cannot tell how i feel now.... my parents are 56 and 55... they have weak hard ... they are sitting next to me and they dont have an idea what is happening... i am her brother 26....in this moment, my hard will explode... my head will fall... only me from the family knows this... and i am hidding this info ttill monday.. when the doctor will probably tell them.... i dont know aany details like chromosome and similar stuff... i asked doctor on private talk, he just tell me aml m5. they are doing anything to save my sis... she is in first week on chemoterapy... she started on wednesday 07.12 and now is 09.12...... its too hard to receive this kind of news and to hide from your family...and we are poor... we dont have a lot of money.... and my parents they are laughing now and feel great since the doctor tell them a lie... they dont have strong heart......and i know everything and i am keeping silent... too much hard for me.... too much :((((((((((

i am pray and i will pray for all of you, i believe that our GOD will help us... all of us will go through this, WE MUST!!!!!! WE MUST!!!!!!!!! WE MUST!!!!!!!!

PRAY THE LORD!

blessing to all of you.

barbarellajc
Posts: 1
Joined: Feb 2012

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.

BILLCONN4
Posts: 1
Joined: Feb 2012

I just joined the group because I have been fighting ocular melanoma for a little over a year.

My wife, however, was diagnosed with AML M5 in March 2005 and after some horrific times and with the gift from God in the help from Moffitt Cancer Center, she is still with me and now helping me.

She had a bone marrow transplant 07/05 and suffers from chronic GVHD still (?always), but one of the responses above mentioned the %'s and that one should forget them -- great advice. And barbellajc seems to have done what my girl, too, did: exercise, dance, walk, anything to keep strong and focused. I admire them both so much! They did and they are both "cured," and you can be, too.

msbettyliz
Posts: 1
Joined: Mar 2012

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

Butterflys_Bridge
Posts: 3
Joined: May 2012

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
Posts: 2
Joined: May 2012

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
Posts: 3
Joined: Apr 2013

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!

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