We are going to u of c tomorrow to meet w head of hematology And then w the head of transplant. Hoping we get a good vibe and if not then try Loyola (given his counts are still stable) Also had a phone consult w the Hutchinson Cancer center(Seattle) and MD Anderson today. Seattle seems to be more of a match for us based on today's conversation.
Ps Rush still hasn't called us w final BM biopsy results, what the hell!!!

Lea,

Have the team's you have teleconferences with so far been optimistic regarding tonys prognosis considering his favorable sub type?

Julie

Lea, Rush screwed up one of Keir's biopsy reports. Have your doctor double check whatever comes back.

I am NOT doubting the 10% number, just saying it may or may not mean what one doc tells you it means and would get a second look at it. That's all. Rush is, sadly, a mess right now. It happened fast.

Hi Lea,

So sorry for the bad news you received. I am sending you good thoughts while you prepare for the treatment plan ahead. I know you were asking about the Chicago area. We are in the Indianapolis area, only a few hours from you. My husband received his treatment at Indiana University Hospital/Simon Cancer Center and we couldn't be happier. They have been top notch from start to finish and don't mess around. I highly recommend this hospital and doctors.

My husband had his transplant in January and is doing so well, in fact, he has been cleared to go back to work. If you have any question about IU, his doctors, anything I would be happy to provide you any and all info.

Sending you strength, hang in there!
Colleen

Lea,

Thinking and praying for your family. Hope your consults have provided some peace and the selection process somewhat easier.

May God bless you

Julie

Thank you Lori lindzee Julie & Dave - we're handing in there emotionally as best as possible and situation like this
The doctors at u of C are definitely doing their own bone marrow biopsy we stopped in yesterday to get labs done HLA typing and meet with the head of hematology and that of transplant had a great meeting and they are recommending Tony for a trial very well tolerated drug that is being studied all over the place and it's already approved. Tony's counts were still stapled or not really moving or dropping all that much as whites are still right around 500 is platelets are at 1:30 and his reds are over 12 so that everything is down a little bit but it's not an emergency situation such as it was the first time around
pathology finally came back also yesterday from rushes bone marrow and they confirmed in version 16 had returned the doctors are still in shock about it as are we considering he was an 80% group of being cured forever. As we know with this disease nothing is hundred percent and so we have to fight this beast again
UOfC wants their own bone marrow to make sure that precious pathologist did not miss anything so we will be admitted on Friday get a bone marrow test and a pick line and prep for induction
Again! :(
We are now going to a different hospital,University of Chicago and they are recommending stem cell transplant, when we are starting with a round of induction chemotherapy this Friday or Saturday what they are doing differently than what is doctors at our previous hospital Rush University medical Center in Chicago. what is done rush is they a pretty standard reinduction protocol for relapse, which is cytarabine mitoxantrone and Etoposide however the doctors at UOfC feel that a etoposide is extremely toxic (mucosal and gut infections) and they want my husband to take a drug called Azacytadine. All patients receive the drug there at the final dosing level of the trial so he will be receiving the highest dose tolerated possible at this point. We've been feverishly doing research on the drug and other trials. It seems to be A good option
Thought process is is that some stubborn stem cells or cancers may become more resistant, like to cytarabine and this drug makes the sells more receptive he will be given five doses of it under his skin for five days prior to the cytarabine and mitoxantrone
They have tested him and his three siblings for HLA typing this week and then will also begin the unrelated donor search. that's another part of this that we have to tackle soon that terrifies us!
We are still considering also going to Hutchinson in Seattle Washington for the transplant if the donor perfect match has all of our research has led us to find that they have the best outcomes there.
Julie to answer you - they still consider a version 16 a good prognostic category even during this relapse combined with Tony's overall health picture and fitness level and his intense drive to be here for izzy!
The best part of yesterday is when they told us that he did not have to be upgraded from her that she could visit and that she could live with us once his counts recovered from induction and then once again after engraftment
It's the only piece of good news that we've heard a very long time
(Apologize for the spelling errors which I'm sure there's money but I'm writing this on my talk to text app)

Lea,

I feel for you so much right now. Tony is going to do great (the docs also told us that youth and health are a huge plus). One of our nurses, while we were inpatient, told us that one day this was all going to just seem like a nightmare. You will sometimes have to think did that really happen to us or was it just a dream? She was a 24 year AML survivor. I'll keep your family in my prayers.

:) Julie

Lea,

I am glad that you are not Googling, but have been away from DS and was saddened to hear about your husband. Don't forget, however, that he still has the most favorable mutation and should do well after transplant. There are a great number of transplant wizards on this site. We earned that designation simply by going through the process. I was 58 when that happened to me and did well and your husband is younger and stronger and should do even better. Many of us found the first induction to be the most difficult, but your husband has done it before and got through unscathed. The rest of it is just the usual drag, but more annoying than truly taxing. The conditioning before transplant involved radiation in my case, which gave me some swallowing issues for a while. Other than that, I did okay. Eating was a bit of an issue after transplant, but after about 6 months, I returned to the world of gourmands. It has now been 2.5 years since transplant. I am well, at the gym, and back to normalcy, I am taking no medications specific to my transplant.

Despite your current anxieties, please be assured that the process leading to transplant is very do-able. We are all here to answer anything and everything you might ask.

Cliff

Here's the study were enrolled in...
http://clinicaltrials.gov/ct2/show/record/NCT01839240?term=Azacytidine&type=Intr&cond=Aml&age=1&rank=1

I'm so sorry to hear his results. Thoughts and prayers. Transplant is rough, but if it is his long time cure it is worth it. You can get through it.
Go with the hospital you are most comfortable with for transplant. The trust factor , at least for me, is huge. I switched for transplant. My registry matches weren't there and my sister was just a half match. Hopkins had/has good results with the Haplo transplants and it looked liked my best option. Hospital 1 swore they were cherry picking cases to get the numbers -(The being just across town from Chemo hospital and closer to home than other options helped too). My husband was ready to go where ever I felt the most comfortable. The change in mentality between the two programs was night and day. First one was you don't have a good match. Doom and gloom. Second was we do these all the time.

My salvage re induction was HAM - if they don't tell you before hand. The mito is blue and it makes everything blue .

The trial sounds like the one doc was going to put me on when they thought I relapsed post chemo (ended up being Evans Syndrome -auto immune attack on blood cells so I never had the extra drug). He felt it worked quite well

Lea,

I read the protocol you sent and read a bit about Azacytidine. This regimen, although still in trials, sounds incredibly promising, not particularly toxic, and based on really sound understanding of Vidaza's mechanisms of action.

From what I know, your doctor's are being quite candid when they tell you that your husband's genetics ARE STILL FAVORABLE!! He should do well. U of C is an outstanding medical center and he should be in very good hands. I know that to go through this again is so upsetting, but good health will be the reward. As I always say (probably ad nauseum already), put the blinders on, put one foot in front of the other (actually my mother says that) and just keep moving forward. The finish line might seem far away now, but, as you know, time seems to go slowly at first during treatment, but begins to accelerate as you finally see the light at the end of the tunnel. When you see it, focus on it, and don't let it out of your sight until your husband reaches it. AND HE WILL.

Cliff

Great post xuelan, Tony sounds like a healthy guy with way too much to live for to let this get him. Positive thoughts and prayers all the way, and stay active as best you can.

Dave J.

Lea,

How is Tony doing-continuing to pray for a cure.

Julie

I was also thinking of you guys today wondering how things were going. Hoping and praying for the best.

Dave J