Sounds like my saga---my diagnosis was AML M2, and my only sibling didn't match either. Do not despair about that part, a lot of us don't have those sibling matches, but there are options in the registry, which grows bigger every year. Also cord blood transplants where the match can be a little less exact, I believe. I found several good matches in the registry, and had my transplant a little over 18 months ago. So far everything has gone great, and I am back to my normal, really normal, life.

The caregiver role is hard, in my mind those who take care of us and support our physical and emotional and mental needs through this process are true heroes. My husband was my rock; initially he did the research on my disease, becoming as much of an AML/transplant expert as a layman can. Me? I didn't want to know every little detail initially, I'm sure it was a self-preservation or insulating mechanism for me. Later, when I was ready, I wanted to know more and did get up to speed, but it's possible your husband may want to be told everything---or almost nothing---at first. Be patient with whatever his mindset is.

Remember that we all hate waiting for test results, it is truly agony. You bounce from positive, hopeful, thinking to imagining the worst. That's normal, and go easy on yourselves if you aren't Mr. & Mrs. Glass-Half-Full every moment. Nobody is. You do the best you can. Pay as little attention to the stats as you can. Many are old and outdated anyway, in this rapidly changing world of AML/ transplant medicine, and many variables are involved, so just know that many AMLers do achieve remission (even though some of us take more than one induction to get there) and do have successful transplants---so try to look forward, not back on this deal!

Let us know how we can be of further help---most of us here have had a transplant, or a loved one transplanted, so we have a common experience and can help guide you through the process. Some have had a lot of ups and downs, some have had a relatively smooth ride, but we are here for support, and to let you know this is do-able.

Take care,

Pam

Hi, Thrillskr-

Welcome to a club that I wished no one had to be a part of.  My husband was diagnosed with AML May 2009 - only a few months after our daughter was born.  I must admit that a caregiver's role is a tough one but you should always remain positive and become as educated as possible.  And the support and knowledge of the many people on these boards is a blessing.  My husband's BMT was delayed this month because he relapsed.  Unfortunately, he has no "whole" siblings so his siblings were not really a viable option and although they all were tested, none of them matched.  So his donor was an unrelated match.  Due to his donor's restricted schedule, he is not an option any more b/c of my husband's delayed transplant so he's getting a double cord transplant next month (pending he's back in remission).  His bone marrow biopsy is scheduled for tomorrow morning.  The wait is agony but you should always remain positive not only for yourself but most importantly for your husband.  You have to encourage him, and you have to always have hope.  I think what helps me and my husband deal with this a lot more easily than people can understand is that we always try to enjoy each other...when he has good days, we laugh and talk and enjoy our daughter.  When he's weak or feeling the side effects of chemo, I let him rest but also encourage him to do what's good for him...eat, exercise (even if it's just walking around the house a little), and to remain confident and postive.  Focus on being positive!

Hi,

My husband was dxed with AML (M2) in December, 2007.  That seems like a very long time ago now as he's had a lot of treatment in the last 2 years.  He had his first fully ablative transplant in March of 2008 using his perfectly matched brother as a donor and relapsed a year later. We later learned that he had the FLT 3 mutation and he was able to get into remission again using a FLT 3 inhibitor, sorafenib.  He just underwent a 2nd mini-transplant with a matched but unrelated donor.  The doctor's thinking is that a MUD will provide more graft vs. leukemia (GVL) effect than the perfect HLA match did.  So it's not always clearcut as to what type of donor is preferable.  And though transplant is a long experience, it's definitely survivable.

The waiting for test results is so hard - I know it's all I can think about after a BMB.  There's a good chance your husband will be in remission and if not, there will be other chemo options to get him there.  The best advice I can give is to take it a day at a time; try not to look back or forward too much.  I don't always take my own advice but I try since looking forward just creates anxiety and none of us know what the future holds, whether we have aml or not.  Be sure to let other people support you so that you can maintain the energy to care for him.  I had to learn to ask for help when I needed it; you'll probably be a faster learner than I was.

Cathy

I am new to this caregiver process also and am still learning.  My husband was dx in September 09 with Acute Leukemia-undifferentiated which is the same as AML-M0 according to the doctor.  I guess there are 2 classification systems.  He recieved a stem cell bone marrow tranplant in early December 09.

There has been alot of very good advice give to you in the previous posts so I'll try not to repeat what has alread been started,  so I'll mention some of the practical things I have found to be helpful:

We are now in an "isolation" period in which the doctors have given us severe restrictions regarding contact with people and places. Basically after his release from the hospital, my husband has been restricted to being at home with severe limitations on visitors and contact with people. They have also recommended that I as the caregiver make sure I don't pick up any type of infection such as a cold and risk carrying it back to him, so consequently, I have limited my outside activities and exposure to people also.

One of the things we have really enjoyed, especially over ths holidays is to have a video cam to be able to skype with family during this time.  Its given us a way to visit with people and to still maintain a way to limit his exposure to people.  I frankly don't know what I would do without Skype.  Its been a way for me to feel like we're visiting with people without actually leaving the family room. We will often Skype with family for several hours at a time, which gives both my husband and I a feel of being a part of things.   When extended family has gathered together in someone's home, the other family has hooked up skype to their TV so we can in a sense be there with them.This has been a great emotional support to both of us.

As a caregiver also, what I have found to be important is getting enough sleep.  When we first found out my husband's diagnosis in September, I was having alot of trouble sleeping and it was harder to handle the emotional stress and to think clearly after days of inadequate sleep.   I found I had to make sure I got enough sleep at night so I could be the emotional support support I needed to be for him and also to help deal with all of the important information and decisions.

During our visits to the clinic, there is a caregiver's support group that meets.  I have found that also as a helpful support system during that time and a good way to find out practical information.

I have also learned the lesson that when waiting for test results, that when results  are taking longer to come back than you expected, it does not necessarily mean that the results are bad.  There have been several times when test results took longer than I expected and I began to speculate that maybe something more was wrong, leading to unnecessary anxiety.

Amen to that!

Ksthy's not made me ralize we hadn't heard from ya'll for awhile.  What's up?

Blessings