Hi I wrote a post this morning asking for suggestions. My mom got her bmb results yesterday and was told she has 91% blasts. It has been 6 months since Auto transplant. They say she is too close to last transplant to get another. The Doc is saying there is nothing else they can do at this point. She was originally diagnosed with AML m1 in Jan. 2009, given chemo, in remission until April last year. Received an Auto transplant 6 months ago. I know there is a wealth of information on these boards and have always recommended them to her. She asked me to post a plea for help this morning. While I was away from the computer all day, she has called intermittently, to update me that we had no updates! Please, if anyone has any info you think may be helpful, please, let us know. We are willing to travel, do trials, just please share your knowledge with us! Also, if I am posting in the wrong place or doing something wrong on the boards, Please let me know. I saw there had been 59 people that looked at our post. Her birthday is in 15 minutes, April 5th. Please help us
I am so sorry to hear this news. I do not have any specific advice - my situation with MCL and auto and allo transplants is different (LymphomaJourney) - but just wanted to let you know that I cared. Andrew
I was diagnosed at age 58 with AML, got into remission, relapsed, had stem cell transplant and relapsed again. Almost 7 months ago the doctor did a DLI (donor lymphocyte infusion) with some of the remaining cells. I am doing well now. Of course, like everything else I don't know how long it will last. But there is hope after relapse even at my age. I'm 62 years old and have been living with this for 4 years. I would be happy to talk with your mom or email if she would like. Tell her not to give up!
Thank You so much!!!!!!!!!!! I am on the way to her doctors apt. an hour away and just went to check one last time before I left. I talked to her this morning and she was crying, saying she thought no one was answering because they knew there was nothing that could be done. Thank you so much, and I bet she will get a hold of you!
Your mom had AML m1 and had an auto transplant?! You might have grounds for a suit. I have never heard of a m1 patient being given any option other than an allo. From what I understand, that is borderline criminal.
I'd go to another doc who knows what the hell s/he is doing and see what s/he has to say. I wouldn't trust this assessment.
Certainly the option of an allo transplant should be discussed. The AML is going to kill her, so why not take a swing on it if you can. I would certainly want competent doctors advising me at this point.
You can't do a DLI with an auto transplant. The DLI uses donor cells to try to create graft vs host disease to combat the new cancer cells. However, with an auto, there is no donor to give cells and your mom's cells won't create a GVH or GVL effect.
I always believe it's not over until it's over. I didn't reply because I didn't see it until just now. I log on in the morning and when I'm done, I go about my day. Actually, there wasn't much action on this board at all, yesterday.
Please remember that every time you or your mom look at the thread, it adds a view. There are also bots out there scanning the net which count as a view when they scan the page. I doubt very much that 59 different human beings actually looked at your first post. Probably more like 10-15 and those folks probably didn't know what to say.
I hope your mom had a good meeting with the doc. Please get a second opinion, though.
Definitely go for a 2nd or 3rd opinion. The first question to ask the doc is why he thinks there is no option. An auto for AML is always questionable. I'm not sure about M1 but Tex knows what he's talking about - even though he's old and grumpy his mind is still decent.
I would think they could work on getting her into remission and then look at an allo. You didn't mention how old she is and if she has any other health issues. Those could play into the doc's thinking but it still needs to be called into question. Getting other opinions will tell you if she has the right doc and don't be hesitant to switch.
Thank you Tex, Kelly and Teresa! Teresa, yes in the original post I had mistakenly put Allo instead of Auto. Don't know how I could do that, guess just tired and desperate! I went back and edited it as soon as I discovered my mistake. I didn't realize that, that must have been why you responded. Sorry, but we still appreciate it.
I just hung up with my mom. She sounds very happy right now! She is out shopping for Easter dinner, which she still wants to have at her house tomorrow!
The last day I wrote was her birthday. I met her at the hospital and her counts were borderline. So because it was her birthday, they said she could wait until the next day for transfusions. We had a lot of nice family events that day. Tears sometimes, but more smiles and laughter.
Yesterday she spent the day getting transfusions. We got numbers for The James in Columbus, and I found the post on here where
porciniak had told me who to contact at the Hutch. Yes, after much searching also found out I had registered as Tired during my moms transplant. I knew I was missing information!
So Monday we will start the process of second opinions.
Hopefully you will be hearing from my mom soon too. She brought her laptop to her transfusions with the intent to post to you all. But wasn't able to log onto her account as her email wasn't working all day. She was very frustrated!
Thank you all for your help! Any more advice on how to go about the second opinion from the Hutch would be great. Also ANY thing you think we might need to know, we are kind of feeling like we don't know where to start.
Also moms wbc had gone from 27 to 33, last I saw.
I spoke with Dr. Reed at the Hutch and he referred us to Dr. Bloom at The James in Columbus. We have an appointment set up for April 30th. In the mean time, mom got a septic infection and spent a week in the hospital . She got out yesterday and we were back there today for antibiotics. She is having to use a walker as her legs are so swollen from the IV fluids. I'm hoping that goes down soon. I hope you all are doing well and thank you for your responses!
I'm sorry we never connected but I didn't save your number when you posted it. You should be able to send me a private message now.
Keep her legs elevated as much as possible. I wore those compression socks for a while. They were a pain but they worked well.
I'm sorry your mom was septic. At least it was today. Just a few years ago, sepsis was pretty much a death sentence and now it's pretty routine and they're able to deal with it pretty well.
I agree with Kelly about the compression socks. Talk with a physical therapist first. They have different strengths and they're not for everyone. It probably won't get her off the walker, however, if she can wear them she's probably going to feel a lot better. I actually liked mine.
I hope her appointment goes well. Please let us know.