Dwayne.
Just popping on here for the first in a couple of days. I am sorry for the speed bump, but happy there is a plan. We will be rooting and cheering and praying for your expedient recovery. It is a process, but there is a lot of collective information available on this forum. I am 11 months post transplant. Except for some GvHD issues, doing good.
Peace, love and hope,
Andrea

Julie,
Yeah by hb I mean red cell count. My platelets were at 76 last time I had my bloods done. They recovered after my induction but were really sluggish after the consolidation.. Don't be sorry for asking questions. That's what it's all about. :)
Great to hear your going well Andrea. Thanks for your well wishes. There certainly is a lot of information out there.

Dwayne

Thanks Dwayne,

Just one more question, hopefully, because your situation is so similar to mine. Do you recall what your red and platelets were when they decided not to move forward with subsequent consolidation sessions? My red, hct, came up to 31 before most sessions. With your platelets at 76 now, when was your last chemo?

Thanks

Julie

Julie, no I don't recall what my counts were my last chemo was the first week of June this year.
Dwayne

Anyone new to this forum, please join this thread and give us some background on your situation and we will see if there is anything that we can do to help. Thanks -- dave

Hi everyone, I,m Andy , I,ve been following this support board for a few months now, I feel like I know everyone on here, Eddie, Cliff, Andrea, Noodle65, sal and wife, Dave, zkat and many more, Eddie I,m praying for you, strength from Brooklyn , much love and prayers for you guys.
My beautiful wife Ana was dx with aml M2 (8-21) inver 16 npm1, NO flt3 or kit, she was dx July/2013 but they and she knew something was wrong April/2013, she is getting the best care from Sloan Kettering in NYC. She is on one of the trials there. She has NOT started induction 7-3 bc life is funny because the same month she got dx with aml , she got offered a job as Director at a major company in NYC, bitter sweet!
My wife is a Nurse Practitioner with a Masters Degree from NYU and has 2 bachelors too, yes the girl is a brain, but I love that brain, she is the most caring and giving person on earth.
I have been in love with her since I laid my eyes on her when I was 13 yrs old , she has been the only woman I ever loved, she is a great mother with 3 boys ages 7,18,23.
Right now , I,m SO SO hurt, sad and very BITTER, bc she does not deserve AML, our family and friends DO NOT know that she has aml, because my wife doesn,t want to worry anyone that loves us, but i,m going threw it with her at night, the meds make her not know who I am, hitting me , cursing me but I know it's the med,s , it's killing me to see her that way.
Like I said this group has helped me threw this stuff

Love Andy
My heart is breaking and I can,t save her
I,m MAD!!!

Hi Andy.
I can feel your deep emotions and it is wonderful to see the love you have you your wife and the praises you sing of her. She sounds like a loving mom. My oldest is my daughter. she is 23 today and my son will be 18 on Feb 14.
You are right, it is NOT FAIR. It must be hard for your wife as a practitioner . I often said, I had seen this movie, but had no idea I was going to star in it one day. My background is radiology. Talk about getting hit by a freight train - welcome to AML, we were all blindsided.

The meds will certainly play a number on the attitudes. I was lucky enough to have my husband , even now, one year post transplant, handle and often ignore my (we'll call) steroid rages along with the side effects of all the other meds. needless to say, it also gets frustrating when you lose focus as a result of the medication.My emotions can be all over too and he (my husband) just listens. I know that as spouses you want to fix us and clearly your wife wants to control this particular demon.
I wish you peace through this journey, strength and resilience. I pray for our collective strength. I do believe in medicine and I know that every day we are closer to cures. We are lucky to have physicians with curiosity and determination.
Please ask any questions you may have and add your thoughts as well.
Peace and forever hope,
Andrea

Andy -- my response is on the thread that you start -- I am glad you started your own thread and I believe that will be the best place for us to help you. -- for those who might be looking for it -- it is the "I'm as mad as hell thread" -- something that I am sure reflects all of our feelings at one time or another, if not right now over Ed. A reminder -- let's all please intensify our efforts to pray for Ed. -- dave

If you are new to this group and are thinking about posting something, let me urge you to do it. We may need you more than you need us. We would love to be of assistance to you as you can plainly see by reading through the threads. Unfortunately, things have been quiet recently because of bad news. But please do not allow that to deter you from jumping aboard. We need to be helping folks just like you. -- dave

Andy. I too am very angry and bitter. I want so much to be able to save my husband. He is 28 and we have been married 1 year on the 16 march this year. I ask myself what have we done to be punished in such a viscous way but the answers to my bitter questions are just not there... :( I miss him so much. My thread is the aml and cml in one body if your interested..

Best wishes to you and be the best you can be.

Lauren, my son was diagnosed in August 2013 at age 29. It happened at a time when things were finally starting to come together in his life and it came, like it did for everyone here, as a complete shock. I had - still sometimes do have - a lot of anger and bitterness about the whole thing. That said, I think most people here would agree: an illness is not a punishment or anything like that. Just as we didn't think about the people who were going through illnesses and hard times too much before it happened to us (perhaps), now we realize that there are all kinds of people out there just going on with their lives while we are stuck in this other place. The writer Susan Sontag said we all hold two passports, one to the land of the healthy and one to the land of the sick. Often, we just don't know when the trip is going to occur. It sounds like you are rather alone and isolated and not getting a lot of support or information from your husband's doctors. One of the things I've found hardest to deal with about this illness is that it isn't like some solid tumor cancers that can be fixed up with a fast surgery. Treatments are long and drawn out, recovery can be slow, and there is a lot of waiting. Life is not the same as it was before. My son has not worked since the day he was diagnosed and we have no idea when that will change. He has not been to public places except medical ones since August. Isolation and uncertainty are real problems.

I am still in the midst of this, many on here are well into their recovery and getting back to their "new normal" lives. It can be very overwhelming and scary and depressing. I would encourage you to open up to the board, ask your husband's doctors lots of questions, and find out if the social worker can help direct you to support groups, etc. If I recall right, you are in Australia? My husband is from Sydney but we live in Chicago. My son with the AML was born in Kempsey, NSW.

I do truly understand your anger. There are times I feel so angry that I don't know how to function well. But you are far from alone - there is a large community of people fighting illnesses of many sorts, disabilities, and other issues that really do seem utterly unfair. I think the only way to keep it from getting you to the point of kind of hating life, you just have to try to focus on moving forward as best you can. Things are not the same and that is a real loss and there is grief associated with it - let yourself grieve the loss of your healthy life together for right now but fight to get it back.

I'm a 40 yr old female diagnosed with AML 12/13/13. I am completing my 2nd round of consolidation tomorrow (2 more to follow). They classify my me as "intermediate risk" for relapse. Which from what I've read, that's most of us.
My last 2 biopsys showed 0 residual leukemic cells. I'd like to give chemo alone a chance, but the research hosp. keeps pushing BMT. Mentally, I don't think I'm ready to wrap my head around a 10% chance of dealth, and GVHD just yet.
Am I crazy? or is this a logical thought process. I have VERY supportive family and friends, but they do not know what this decision is like.

Welcome to the club no one wants to belong to-Christine. I am glad you found us and feel safe enough to share your concerns. I am an almost 49 year old mother of three glorious daughters- 9, 11 and 13. I was diagnosed with Inversion 16 AML (a favorable subtype) on March 22, 2013. I just completed my fourth round of consolidation on Nov 17th and was deemed in complete remission (no leukemia or Inversion 16) from a BMB on 17 Jan.

However, my first 30 day labs showed a drop in platelets from 73 to 55. My next labs are on the 10th and if my platelets drop at all, I will have my 8th BMB. My med team wants to rule out relapse.

I don't tell you this story to scare you rather to demonstrate how individual this heinous disease is. I had a very favorable type; however, my chemo took twice as long as yours due to slow platelet recovery. My med team, who I trust implicitly, allows all favorable and intermediate subtypes (without FLT3) to go the chemo only route. If they relapse, BMT is plan B.

If, Heaven forbid I relapse, I would not think twice about a BMT. I will fight to my very last breath. I only have one full sibling who has not been typed. Before I found this site, I was very skeptical of transplant, then I found all these successful warriors who are winning the fight everyday.

My two cents are to go down the path you are on and pray for positive results as others have obtained. If your med team is pressuring you and you are not comfortable with that, get a second opinion. Many here have done amazing with chemo only. I posted a question about chemo only right after I joined. I will post a link so that you can see all the inspirational stories!

Praying for you.

Julie

Christine,

Here is the link to my post:

http://www.dailystrength.org/c/Acute_Myelogenous_Leukemia_AML/forum/17072640-any-chemo-only-bmtexamples

Christine,

I too was "intermediate" with my AML. Transplant was recommended and that is what I got. This week will mark 2.5 years of being well. The thing is that your best chance of cure when in the intermediate category is BMT in first remission. I know it is a horrid thought, but you will get through it and have the best chance of being very healthy again. I recommend just listening to the recommendations, choosing what feels right for you, and then putting the blinders on and marching forward. Many people on this site have done just that and are alive and well today.

Cliff