Welcome Sherri, to the club no one want to belong to; however, I am so glad you fobs us. This group is amazing with so much love and knowledge to share.

Do you know if toy husband is a candidate for chemo only, consolidation, or headed for a stem cell transplant? Do you know what subtype be has? These are all important as I'm sure you've figured out.

I was dxd just over 3 years ago at age 48 with the daughters, 8, 10 and 12. In many ways it was the best thing that happened to me as it completely rocked my world. Although a Christian for 20 plus years, AML forced me too completely rely and focus on Almighty God. My family grew closer to God and together.

I had a relatively easy AML journey as I was chemo only with little to no complications. I pray your husband will experience the same. Some advice I was given really on that helped me so much was to stay away from the Internet on AML. the stats are horrible mainly due to the average age at dx is in the 70s plus dated info. Listen to the med team and the group here.

Please stay with us and let us help.

BTW, be prepared they the BMB may need to be redone or even a second round of induction required. Many here have dealt with that.

Blessings
Julie

Hello Sherri


Welcome to the group. I am sorry that you and your family are having to go through this, but stay strong and have faith that things will get better. Try to take it one day at a time and stay as positive as you can.

Can you tell us your husband's first name so we can add him to our prayer list?

Hugs
Karen

Hello Sherri, I'm glad you found this site. I was exactly where you are now in May of 2012 with my 37 year old wife Hayley. I was grasping for any information from real people that are going through or have been through this. Although it consumed our lives for a couple of years with treatment and a stem cell transplant, she is healthy and normal today. You have found a great place with awesome people.

It looks like you will be ahead of the game with you being a nurse and your husband being young.

There are some very smart people on here that will help you in any way they can. We will be praying for your husband and your family.

Shane

My husband's name is David and he has subtype M2 with FLT3 and NPM1...he is in the intermediate prognosis which according to our doc it isn't the worst and it isn't the best. Bx went well today but now we wait for the results and go from there. BMT is a possibility but we are too early in the game to know if he will need this.

Our oldest daughter is transferring to a college closer to home next year to be closer to her dad.

I have informed the family to stay away from googling AML, as I always advise my patients to do. The Internet will scare you to pieces!!

Thank you all for your kind replies and prayers

Hi Sherri,

Sorry to hear about David. To put things in perspective, I was diagnosed with AML in March 2011. I was intermediate cytogenetics (no detectable chromosomal abnormalities). I failed my first induction, was reinduced, with success, had a series of chemo consolidations, and ultimately underwent BMT in September 2011 with a T-cell depleted protocol. I have since been relatively healthy, except for some pneumonias, and have returned to what I consider to be a normal life. Virtually everyone who has gone through this has hit a few what I call "speed bumps," annoying glitches in one's health that are overcome. Ultimately, most do come out whole after the months of treatments. The most important thing is to be positive about things. As an AML mentor of mine, that I met prior to my transplant, and who is now probably approaching 20 years wisely advised me, "Don't sweat the small stuff, because it is all small stuff." I have tried to make that my mantra.

I should tell you that I never asked my M-type and in 5 years have read no statistics or prognostications about my AML, and I am a physician. I agree with you that the Internet is dangerous. As Alexander Pope wrote, "a little knowledge is a dangerous thing." I believe that.

Sherri, always remember, as you and David go through this, that we are all here for you should you have any questions.

Cliff

Sherri -- it sounds like you are on the right track, and please let us know of your medical background. Cliff is an MD, but as far as I know he is the only medical person we have commonly writing. I am about 6.5 year survivor -- chemo only, DXed with both AML and MDS, now 72 -- back then at my age they saw no big advantage for any transplant so just did wait and see. Things have changed quite a bit in five or six years, but chemo is still chemo.

Some tips -- no toast of other things that can be rough on the mouth, especially hot things -- warm is OK but any injury to the mouth just will not heal, so best thing is prevent it. Salt and baking soda solution wash out hourly (whenever in the bathroom) is probably as good if not better than what you can buy, although using the other stuff is good once in a while. The side effects of chemo will not hit until at least a few days after the chemo is completed, so when it does do not be surprised. Try to get ahead of nausea by taking the stuff they give for it at the least indication of a problem. Infections are the killers, not chemo or AML -- and since the latter two are unavoidable at this point, take every precaution -- for me that meant no visitors please. For 20 or 30 pages of details, which I doubt you really want to pour thru at this point ... but maybe later ...
http://www.biblethought.net/cancer-victimscaregivers.html

David is going to get thru this adventure in great order -- it is just a matter of persistence, prayer and patience, not necessarily in that order -- we will be praying for David, you and your family -- daveB

Thank you for your encouraging words, Cliff...I actually have the book "Don't sweat the small stuff and it's all small stuff" and I will have to re-read it soon.

DaveB I am currently a pediatric RN but have worked on an adult medical renal unit and spent a rotation in surgical oncology, so I do have some experience on the nursing side of cancer. I will never claim to have all the answers but I would be happy to answer any questions that I can.

David had a rough day today with some high fevers which initiated blood cultures, urinalysis and a chest X-RAY. UA & XR were all clear, but it will take a while to get the blood cultures back. Can't imagine that he's not covered for any infection because he is on vancomycin and merrem among antiviral and anti fungal meds. But I'm not sweating this, I know it's par for the course and he is getting excellent care and snoring as I type.

Results on bone marrow come Monday and I will share those as soon as we hear. I am so glad I joined this site because sometimes when you are a nurse, people think you don't need to ask others for advice and I so appreciate reading all of the personal experiences from you!!

sorry about your husbands aml. Donald is right about the prayer, I directly attribute my survival to the power or prayer. I'm 27 months post transplant and with the exception of a few minor annoyances, I am doing well. I too had the flt3 mutation but was in the high risk category. My name is David Johnston also. I'll be praying for his cure.
davej

Update: last BMB results inconclusive and needed a repeat done today. Hopefully will have good results tomorrow, start neupogen injections and get him home Feeling hopeful...

Good morning. This is my first post. My mom was diagnosed with AML with Flt3 on July 22, she just turned 65. It was the most devastating day of my life. She lost her husband 3 years ago and I have been her support since then. She went through 2 leukapheresis before her induction with 7 + 3 which included midostaurin on days 8-21. She also had 6 spinal taps to eliminate the cancer cells in her spinal fluid. Her day 14 biopsy showed no leukemia but her counts were really slow to return to normal. She spend 10 weeks in the hospital and after the second biopsy on September 11 she was told she was in remission. She is not a candidate for a BMT so we are doing chemo only. She is in her first round of Vidaza and will follow that with 14 days of midostaurin. I am scared every day and her diagnosis has really impacted my life. She is my best friend.

Hello rach919 my husband Daniel also have AML flt3 mutation and he's 46 and he's in remission and then waiting for a bone marrow transplant I wish you and your mother the best God bless you both and we will pray for you stay positive stay strong.

Sherri,

I am a 6.5 year survivor of AML. I was intermediate risk and received a bone marrow transplant. What are the specifics of your husband's leukemia? If you can share some details, I might be able to answer many of your questions.

Cliff