Sorry to hear the news, Steve. But you can still beat this beast with the transplant. Good luck and we'll all be pulling for you.

Lou

Hi Steve,

I am so very sorry to hear the news. Pray that the road ahead won't be too tough. Praying that things will go well and smooth. Please keep us updated.

Sorry to hear of it also. If there is anything I can do to help please let me know, I am close by.
DaveJ

Steve,

I have been AWOL from DS for quite a while and apologize to all the others who have been here to support those going through issues.

I was very unhappy to hear about the AML recurrence, but, like the others are confident that you will conquer this with a BMT. I will be praying for you all the way.

Cliff

Steve,
I'm so sorry to hear that the AML came back. You'll be in our prayers.

Margaret

Hi, all,

I was on vacation last week--my oncologist let me do that since the AML was not too far along yet. I entered the hospital today and have my picc line. One oncologist came in with a PA. I will likely get 7 + 3 again (ugh) plus something additional that Ann Arbor decides in prep for the bmt there. I'm doing okay though of course I'm not thrilled about being here. I'm making the best of it.

Thank you for the update-Steve. You have been in my Family's prayers! Praying induction part two goes smooth with no speed bumps and onward to SCT.

Blessings,

Julie

Praying for remission and on to transplant and cure.

DaveJ

I just talked with the oncology PA here, who is very knowledgeable. Three options: Chemo here (different from 7+3) then bmt at Ann Arbor; chemo + bmt at Ann Arbor; or clinical trial at Ann Arbor for a new promising treatment that in Phase 1 has had very good success in the 8 people it's been tried on. I have asked him to call Ann Arbor about the trial. It's a roll of the dice either way, but I'm willing to give it a shot to move beyond the current treatments which are new several decades old. As Captain Picard says, Make it so.

Did you have your consultation with the U of M transplant team? If not, I would definitely meet with them and discuss all of your options before making any decision that could be (as you are well aware) life or death. I am sure they will be completely honest and give you what they believe will be your best option for your treatment and ultimately, cure.

If this has been done and the clinical trail is the path, I hold your decision in the highest regard, its people like you that are willing to take the new path that will ultimately end with a cure for everyone.
Please share when you can on the details of the trial, immunotherapy?

I'll keep you in my prayers, and please keep us updated as best you can.

DaveJ

Dave, the bmt clinic and the leukemia clinic at U-M are, as I understand it, the same office. So I think all the options will be discussed. The current plan is to consult with the doctor running the trial on Monday.

Here is a link to the trial:

https://umclinicalstudies.org/HUM00095314?topics=14305

Hi again Steve.

Please think long and hard about this decision. Get a lot of opinions and not only from the hospital you're being treated at and the guy running the trial. Maybe you can talk to someone at the Hutch, MDA, MSK, Dana Farber or one of the other heavy hitters. They will give it to you straight, especially MSK who I found to be very straightforward with my second opinion. And if you have many perfect matched on the registry I think the doctors you contact for a second opinion should know that.

Also keep in mind that while the current treatment protocol is several decades old and it sometimes does not work, it has also been successful for many patients. A stem cell transplant is meant to be a curative procedure and although somewhat risky it is still considered the gold standard. If there was a better proven protocol it would be widely used and would have replaced the current treatment plan.

Finally, this is a phase 1 study according to the link. That's pretty experimental. Of course everything starts out as a phase 1 study and this may very well be the thing to replace the current standards, but before you commit to the trial I urge you to make sure that it is your best option. Good luck and keep us posted.

Lou

It looks like the plan would be to go back to more conventional treatment (chemo and transplant) if the drug is not effective. My worry would be that the aml gets out of hand in the process, and the inability of chemo getting you to remission for transplant. I think the 2nd opinion is a great idea. There are two other hospitals that are participating in the trail, maybe make contact with their docs as well as one of the centers lou mentioned. Thanks for the update, as always, prayers your way.

DaveJ

I just talked with U-M. The doctor will discuss both reinduction chemo as well as the clinical trial with me, as that clinic does both. My preference for reinduction, if that is what I do, would be to do it here in Kalamazoo, close to home, and then do bmt in AA.

That's what I did (not from relapse though, 1st round) was the induction and consolidations in Lansing at Sparrow then went to Karmanos for the transplant.

DaveJ