Hi Lea,

Sal did NOT have a T-cell depleted transplant. His re-induction and consolidation regimens before transplant were FLAG-IDA: (fludarabine, cytarabine, idarubicin and G-CSF/Neupogen). Conditioning for his transplant was TBI and Etoposide. We haven't asked what they would do if he relapsed after transplant.maybe we should?? Didn't want to mention the R word...

Met w head of transplant yesterday and had a very REAL discussion. We wanted to know what his thoughts were for best outcome possible. And basically since Tony relapsed (even though he has inversion 16 favorable type) he's automatically put into a high-risk category because of the relapse. Having a discussion and talking about statistics and the possibility of how many patients actually die from just transplant related complications and also about the high potential relapse was very heavy on our hearts yesterday! Because he relapsed after chemo only, transplant is the only option for us that makes sense for chance at surviving aml. Was aweful to hear that the potential risk associated with a 50% chance of a survival cure is unbelievable to us
They do t-cell depleted transplant w/Campath at UofC plus conditioning chemo of Flu+Buls, and do not do total body irradiation (i'm not sure if that is what is normally considered a reduced intensity conditioning since no irradiation??)
T cell depleted greatly minimizes chance of graft versus host disease and all the complications that go along with it however it does leave you open for a 30 to 40% chance of relapse of the aml and so the thought behind the doctor really wanting Tony to sign up for the preemptive DLI dosing trial is to counter act the potential for the relapse of aml. They are trying to see if any of their top five donors Are a KIR mismatch which would help in the potential cure this disease also, but we may run out of time In finding out that result before we need to go to transplant. The doctors want to admit by the end of the month & I totally agree to avoid consolidation. I found some research on preemptive DLI small spread out doses after transplant have all had very good success rates and only minimal reintroduction of Gvhd. If he develops a bad gvhd after a DLI they stop the dosing
Tonys really down today, it's a very heavy weight on our shoulders. I know everyone says can't read into the statistics and I'm really trying to focus on all the positivity on this website it's very difficult when your doctor's look you in the face and shoot those kind of numbers out at you though :-(

Lea,

Don't let all of this get to you. The risk of not getting through the transplant process was stated as 10% to me. I really did not need to know that number, because I was going ahead with transplant anyway. I think that many centers are getting away from TBI, probably because it is associated with second cancers, generally of the skin, although that risk is not particularly great. I think busulfan is now a common substitute.

Thanks for the explanation of the DLI rationale. That was not proposed to me as a prophylaxis for relapse. I really do not think that T-depleted transplants are associated with the degree of relapse that you state. My doctor was the senior author on the experience of Sloan Kettering with this type of transplant.

Bayraktar UD1, de Lima M, Saliba RM, Maloy M, Castro-Malaspina HR, Chen J, Rondon G, Chiattone A, Jakubowski AA, Boulad F, Kernan NA, O'Reilly RJ, Champlin RE, Giralt S, Andersson BS, Papadopoulos EB.Biol Blood Marrow Transplant. 2013 Jun;19(6):898-903.
Ex vivo T cell-depleted versus unmodified allografts in patients with acute myeloid leukemia in first complete remission.

I have not read it, as I read nothing on my disease. However, I understand it gives a positive review of T-depleted transplants.

Lea, please do not look at a glass half empty, but rather a glass half full. Tony will get through this, with or without a KIR mismatch. A friend I made through this process is healthy 15 years post T-depleted transplant and now enjoying himself in Hawaii.

Lea...this whole situation stinks, especially since Tony has gone through it before. He is young, in great shape, and he has YOU and IZZY. Put the blinders on and keep your eyes straight ahead toward the goal of good health. Don't get distracted by the "speed bumps." Everyone has to navigate some, but the "straight-aways" are so enjoyable.

Cliff

Those are hard conversations, just to try to take in all in be be focused when there is so much anxiety, it's horrible. It really boils down to your trust in your doctor and the staff. These people have dedicated their lives to this fight, and are constantly learning and adapting treatments to achieve the best possible result for their patients. I have total confidence in my team so i have done exactly what they have told me to do. I didnt know that relaspe automatically pulls you into the high risk category. That definitely changes things. Please tell Tony he can not even think about relaspe, he has to be totally focused on getting through the transplant and back to health.

My prayers are with you guys.

Dave J

Hi everyone, sorry I've been away all week. Yesterday was our 7th wedding anniv and Father's Day (happy Father's Day to you all) so a very emotional day for me to say the least.
Got an update from the coordinator that transplant looks like it'll be first week of July now, due to donor availability. Still no mention of more chemo in between (got out if hospital may 22 for reinduction, seems like a long time). They've selected the top donor and unfortunately seems like due to redtape and clerical error they weren't even able to test any of the donors the KIR mismatch. this was a huge disappointment to Tony night as we were really excited about the potential benefits from this and to not get this opportunity because paperwork wasn't processed on time is infuriating
We had a busy week last week and since Tony's Counts were wonderful at Monday's appointment (whites5.6, ANC 4.5,heme12.1 and plates 247) we saw family & friends, went out for dinners, etc, however he's paying for it now. Started developing a cough a few days ago, w sore throat, so I've been a total wreck worried again!!!!!! His doc said virus going around and to keep an eye on it. I get worried we transplant coming up if he's not feeling 100%. He's ran a 5k the other day, no problems, but yesterday his throat hurt him again. My head goes to all the worst places, I can't stop the panic & worry...

I'm sorry for the panic and worry, it takes a lot out of you. And it is frustrating with the errors and huge paper trail that goes with this. If tony has to go back for consolidation because of the delay maybe that will give them time to still do the testing? I know its not ideal for sure, just a thought.

dave j

it just occured to me that my post probably is going to cause you even more worry. Thats not what i meant to do. It doesnt seem like my brain or power or reasoning is working very well lately, need to take a break from posting till i am thinking straight again from the chemo brain that they say may never get better. sorry lea.

dave j

Dave- no worries!! Your post did not make me worry more, you are correct though the administration part of this has been frustrating, too many cooks in the kitchen with BM coordinators doctors researchers and the registry running point on stuff w the donor. I know you've stressed you struggled even having a sibling donor, ugh. How many months out are you again? What was your conditioning regiment and were you tcell depleted? I can't recall

Lea, my thoughts and prayers are with you guys throughout this process. Hoping and praying everything goes well for you.

Lea,

I had Busulfan and Flurarabine Chemo for fours days, just Fludarabine on the 5th day, a rest day, then the transplant on day seven. I was not tcell depleted. I did get gvhd on the skin in the begining and still have it affecting my stomach, but compared to a lot of the other people on here i have absolutely no complaints about how it has gone so far. I guess i do have one complaint and it is the chemo brain, it seems that any stress makes my short term memory terrible and i just cant focus all that well at work. I have to make people check my work to make sure i have no mistakes.

I am taking very little inmune suppression now and hope to be off it completely in about 6 weeks. I still am not 100% donor cells on the lymphocite? side but am 100% on the myeloid side. And they told me last week i had to start getting my inoculations soon. I didnt even realize i had to do that, they said it is as if i never had any since the transplant.

Sorry to be so long winded, hopefully this answered your questions. As always you guys are in my thoughts and prayers. It wont be long and you will be posting about how well things are going. Just stay after those coordinators to keep things moving along.

Dave J

Oh, and i am day 172 post transplant. I hit the 6 month mark next friday thanks to all the prayers, my lord and savior Jesus Christ, and good people at Sparrow and Karmanos.

Dave J

Congrats on your 6 months Dave! That's great, many prayers on continued success.

Debbie

thanks Debbie, it is a huge milestone for me.

Hi Lea,

I was reading through your posts and my wife and i had many of the same conversations with our doctor. They told us that Christina had a 5-10% chance of cure with the transplant but a 0% chance without it. The basically gave us 3 options with 1 being the transplant, the other a trial drug and the 3rd just a management course of chemo to help extend her life a bit. It is very difficult news to hear and try to process through. Christina decided on the transplant and she is now on day +23. She has been fatigued, achy, and has had nausea daily since the transplant, but with a 13 year old at home it gives her the best chance. I got some advice awhile ago that once you make your decision, don't look back and keep as many positive thoughts flowing as you are able. You are on the path to recovery! I will continue to send positive thoughts your way and pray for a great outcome!!

Tom

Hi Lea,

Just wanted to check on Tony (and you) to see how things are going. Hoping he is better and stronger every days.

Sending happy thoughts,
Colleen