Thank you for welcoming me, dave. I have very little GVHD, just a bit of skin rash and bowel issues, very minor. 3 years and just with Chemo, that's impressive. Did they not offer you a transplant? renate

I met 2 people at my London hospital who were 11 and 18(!) years survivors after transplant. My role models! Renate

Oh, so many of your replied! Thank you! I thought I would be told by email if soemeone replied, but that function did not work.
I wish you all so well. May we all be strong and get healthier every day, thanks to modern medicine and the universe looking after us.

Dear Sandra, good luck with your husband's last days of the dreadful first 100. It did go better VERY slowly after that. Renate

Hi Renate,

Welcome to the group. I'm impressed with your progress from transplant and the health system in UK. In particular, you were able to go back to work 6 months after transplant.

I am 7 months post transplant and currently on long term disability program through my employer. I miss my work but I know I am not ready to go back to the work force yet. I miss the work dynamic and connection with people. You are a yoga teacher you said. It seems a very rewarding job; meditation, relaxation, and interaction with people. I used to go to yoga classes and miss it very much. I try to do some simple yoga at home now but the effect is different from doing it at yoga studio.

Violet

Liebe Renate,

Ich bin so glcklich, dass Sie jetzt ein Mitglied unserer Gruppe. Ich war weniger glcklich, Ihre Geschichte zu hren. Dennoch scheint es, da Sie sind jetzt wieder gesunt.

I was also unhappy to hear about how your sister refused to help you and that your finding a donor took a somewhat bumpy path. Nevertheless, I always say that we need to keep our "eyes on the prize," and the prize is what you are experiencing now.

I was at the hospital today getting inoculated for things that I was vaccinated for as a young child. When they say that the day you get your transplant is your new "birthday," that is true in every sense of the word. My blood work today was fantastic. I am 16 months post T-cell depleted transplant, and I am feeling well and have normal blood counts. Although my cell-mediated immunity is not where it will ultimately be, I have completely avoided viral infections (my wife is just getting over a bad cold, while I have not had a sniffle). I am grateful to my doctors and to God for my recovery. You have beat cancer twice and I feel unworthy compared to you.

Mein Spender war aus Deutschland. Offenbar ist Deutschland hinter den USA die Zahl der Knochenmarkspender. Like you, I will not know his name until two years has passed. He saved my life and I will be indebted to him for as long as I live. Now my bone marrow is half my age!

I am glad that you have not had significant problems with GVHD. Neither have I, because of the nature of my transplant. I have good feelings about so many members of our group who are now in the process of passing the magic 100 days. Sie sind eine tapfere und mutige Gruppe.

Again, so glad to have you aboard, sharing experiences and encouraging the rest of us with your bravery.

Best,

Cliff

My wife has Therapy Related AML, which meds are the best for AML, I know everybody is different, my wife is currently on Decitabine, we finished our 3ed round today and our counts arnt improving, counts around ...WBC..1.5 / RBC..2.78 / Platlet..7 / Neut..11%...we average about 2 bags of blood every 10 days, taking ( im having a brain freese ) something for platelets, cant do infussions, she is not a good cantidate for BMT, or Induction Therapy, we do decitabine 5 days every 28 days and Herceptain every 21 days for Breast Cancer, she has 2 or 3 structural changes and 1 numerical change ( sometimes I think she is Super Woman ) what have others seen success with, Im aware this is a tuff battle for her she has been going above and beyond to keep healthy so other complications within her control wont set in ( I think that is the hardest part, since she is 36 years old

William,

I am confused as to why your wife would not be a candidate for BMT. I was so sorry to hear that she is battling two things at once. What is the status of the breast cancer and what is the situation with the bone marrow that prohibits BMT. I am sorry to pry, but a bit more information would be very helpful.

Keep strong. She sounds like she already is.

Cliff

we were on a trial called TDM-1 for Breast Cancer because nothing else was working, when we found out she had developed Therapy Related AML, they kick us off the trial,and we went back on Herceptian for the Breast Cancer, Breast Cancer is ongoing and are treating it every 3 weeks.So Core Biopsy is 50% Blasts / Bone Marrow Differential 28.2% Blasts, Kayroytpe: 46XX t(8;21)(q22;q22)[5]/47,sl,+8[2]/46,sl,-X,+mar[3]/45,sl,der(12;15)(q10;q10)[9]...so even thou the - t 8;21 is good for some one who has AML denovo, because hers is brought on by pryor treatment its looks as if it is a structural change I guess...all I know is 3 structural changes can be a problem, and there can be a problem with graph or something for the BMT, they say her bone marrow is damaged and to do induction could kill her, and were going to keep that as a last resort, that even though she is 36 her bone marrow is 86

William,

Where is your wife being treated? Does she have active breast cancer as well as AML, or has the breast cancer been put into remission? What was the reason she was on a protocol?

Have you gotten other opinions about the best treatment for your wife? She is so young, and I would be willing to try the best I can to inquire, if you would like me to.

Cliff

Again, I apologize for asking so many questions.

William -- we are all so sorry to hear of your wife's situation -- it sounds horific. But she has her age in her favor. I am thinking that the only long term hope might be a BMT since her current marrow is obviously not functional. She is the first one on this list who has contracted AML from another cancer therapy, so we really do not have much experience with this, and I am thinking that your med team there does not either. I am a 3-year AML/MDS survivor with a t(8:21) -- chemo only, no transplant, and I am now 69. Age was the primary reason for not transplant, although now I am glad for that since I am not worried about GvHD.

Putting myself in her situation, I would want to take a chance on what seems to me to be the only hope. To, with the grace of God, survive an induction and then go on to the BMT or perhaps a SCT. But your med team would need to support that.

Oh -- there might just be one other alternative -- we have some on this forum on the "Alternative Treatments" thread who have had success in fighting off the blasts of AML using osteo-K. If the med team cannot come up with any better ideas, then this might be the way to deal with the AML blasts while she undergoes the breast cancer treatments.

To get to the Alternative Treatments, click on Acute Myelogenous Leukemia in the box to the left under My Support Groups. This will take you to a list of recent discussions. The alternative treatments thread will be about the fourth one down -- could change as people post but it is near the top -- looks like Jonathan just posted to it yesterday. Also, here is the video from Heather's dad:

http://www.youtube.com/watch?v=U4NVrmUqw-8

Please keep us up on whatever happens -- we are praying for you and your wife. Many of us have had some close calls and have come back from the heart of darkness -- with God's help she can make it though. -- dave

Cliff, She is currently being treated for Breast Cancer, ( We are at Emory Univeristy - Windship Cancer Center ) we were in trial because because it kept spreading ( olny in different places in the bone ) one time it spread to the brain but we did a procedure called Gamma Knife...it took one treatment and then about 9 months later it was to small to be seen, but now were back on the tx that didnt work the last time, but thats all there is at the moment......Dave, Ive herd a little on the Osteo-K and Im looking into it, I want to find out about what potentally it could do to the blood ( as far as thinning it and such ). Ive done a little reasearch on BMT and the problem is with someone who has Solid Tumors there is alot more risk involved along with the fack that I dont know if there has been alot of experience in BMT with people with active Breast Cancer, Ive read that MD Anderson has done a few, but I dont know with what success, we go for another Biospy on Feb 21st, we will make a decision then, my concerns are more about her counts right now, there not very good and they dont change much and have been this way for 3 or so months, and if we cant get them up ,it could be just a matter of time before a complication sets in, the mind blowing part is if you seen her on the street you could never tell, but come 7 or 8 at night she is wiped out, sometimes I have to put her on restriction - lol - to get her to take it easy, I feel good about her Doc, if the Decitabine dosent work we will probly go Induction, Our Docs speciality is BMT and shes is almost guaranteeing that it will not work, she said for the best quality of life take the decitabine route and if it didnt work think about Induction, we have been going to Emory since 2008 for breast cancer and they have never steered us wrong and have had good success there, but then again Leukemia is a whole new ball game....Thanks for Listening

William,

I now understand the dilemma and also understand why BMT would be an outside possibility. On the other hand, it is a "go for broke" therapy that if your wife were able to withstand therapy that totally ablates both the breast cancer and the bone marrow, she might be able to start from scratch with a new marrow. I am quite sure that your wife is getting the best treatment. Sometimes therapies can be worse than the disease, but I would get as much information as you can. Keep strong.
Cliff

William -- don't know if Cliff told you -- he is modest -- but he is an MD -- the only one on the list. Not an onc, but that is OK since he does speak our language. He has been a God-send to us, since most of our complications need to be handled with fairly traditional medical procedures, and you are already getting the cancer specialty expertise from your wife's med team. Her's is obviously a very complex case and the first treatment induced case of AML that we have had on this forum. We are anxious to continue hearing from you, and just hoping and praying that a way will be found to get her through this maze of problems. -- dave

No...Its cool.... Dave, I have grown fond of You and Cliff, since we have been writting, I enjoy talking about it with ya'll, it is very dangerous for me if I keep this stuff inside of my head, it is very complex, but its been that way sinse my wife progressed to Stage 4 Breast Cancer....I was telling Tinas Doc that it must be hard on her and her team because they are used to saving people and in my wifes case her hands are tied...It is just so hard because I know medically what the end result will be....and I love her so much...

Hi i am new to the this site i am having a stem cell transplant next week having chemo first wondering if any one has an experince of the transplant.
i am feeling well at the moment as my induction chemo has got me in remission
i also consider myself lucky as my brother is a match