I posted here a few times....and now, unfortunately, I'm back. My husband's blood showed 5% blasts at his visit on Monday. It hasn't been confirmed with a biopsy yet, but this looks like relapse #2. He's had a full transplant (full match sibling), and then chemo/dli after relapse #1. He has AML subtype M0. I can't help but think that there is not much hope left, and I don't know how we're going to do this again. It seems like we just home from the last round.
He's not quite neutrapenic yet, so the doctor thought we could have a couple of days at home. We're waiting to hear from them as to how many days before he's admitted. Treatment is going to involve a drug he hasn't had yet (not sure which one), and then if they can get him into remission, they will try an mini unrelated donor transplant. There are going to be insurance issues with that....so far we've been very lucky financially, but I don't know how long that we'll be able to hang on...
Jeff took an Ambien this morning and is going to try to sleep the day away. I had to come into work and try to get organized, and figure out, once again, how to do my job from a hospital room. Our 18 month old son is home with Jeff's mom and my dad, and luckily, he doesn't seem to get that anything is amiss.
I'll keep everyone posted.
Thought you could use a little support. Oy, what a thing to have to go through. But we've seen this before on these boards and have had successful outcomes. So don't give up any hope. They'll try whatever they can. I wish you the best and most of all some calm. When my husband has issues I tend to freak which does no one any good. So try to breathe, deeply, relax your muscles and take it one day at a time. Hugs, Judy
Hopefully whatever this new drufg is will do its job. I dont recall any names from the board, but I do know of several successful outcomes here. There is a lady at my center that had three transplants, and finally shes gone 3 years without any more, and hopefully she wont need any more...and she looks and seems VERY healthy. I know how hard this whole thing is, but I couldnt imagine it with a little one. Thank goodness for parents!
Hang in there, Jamie, honestly, I know this is gut-wrenching right now, but don't give up hope. There are so many new things they are trying these days, combos of things, 2nd and 3rd transplants, trial drugs. Please keep us posted; does your hubby have access to Ativan for anxiety, if not, he might want that to help with better sleep and trying to get through this stressful time, understandably. I'm keeping all of you in my thoughts and prayers....(((Hugs)))Pam
I'm sorry to hear about your husband. When I was going toward my transplant I knew of someone who had gone through 3 transplants and was doing well. They're continuually learning new methods to attack this thing so take some comfort that they're always learning. Help him to be strong.
Hi Everyone - We told the doctor that we'd like a few days at home before making the trek to Hershey. Our transplant center is a 3 hour drive away from home, and we'll need an apartment because the Hope Lodge doesn't allow kids. Right now the plan is have more bloodwork and a biopsy done on Tuesday. If it's more obvious from the blood work that the leukemia is active, we'll be admitted right away, if not, we'll wait for the confirmation from the the biopsy. Jeff is in an Ativan-induced stupor right now, and sometimes I wish I could go there, too. I'll update you as soon as I have the firm treatment plan.
One of you has to have a clear head and probably better you than Jeff if the choice has to be made. I'm so sorry to learn of this current setback. And I hope that's all it is is a setback. There's no reason to think taking another course of action might not produce different and better results.
Please keep us posted. I hate to think this is happening to someone else.
You are right, Tex. I need to keep my head clear, and I also need to keep my body free of drugs. (I'm still breastfeeding my little one at night, and we are attempting to have another baby in the middle of all of this.... Unfortunately, baby-making isn't nearly as fun this time around, but we were lucky enough to be able to save some sperm before Jeff's treatments started.)
hi there...up until a few weeks ago i would have told you that you can get through with MO. Actually I will still tell you this!!
Hamish (my son) on the same discussion is just recovering from his relapse and SCT for M0 ... but he went 5.5 years to get us here, we are one of the very few MO'ers here ... we don't see many, so I only know of Ham really and one other some time ago. I have not heard of another, and if it wasn't for this very recent relapse I would be confident saying 100% for the M0 I know ... but I believe we can do this, so can you. The M0 thing is not the only thing that is going to matter for you. I am so sorry you are doing it again too ... My littlest was only 3 last time, and this time he is 9 ... but it still makes it tough so know how hard it is trying to juggle work, children, sick partner etc. Staying positive is so hard sometimes, and I struggle with that myself. But each day i know is a day closer to cure is a day i am thankful for. We can do it, good luck with everything and keep those baby plans happening ... really great that you can look forward with something positive like new life ... and I hope it is new life for Jeff with a cure this time too.
We head back to Hershey tomorrow, and we'll find out all about the treatment plan, etc. Physically, Jeff feels fine, but his mental state is another story. I'm not sure what I can do or say to help him through this time. He has been taking Ativan regularly, but he's just so depressed that he can't move. He is convinced that this is it, and of course, both of us know that his chances are slim at this point, but he's alive now and that means there's a chance that the treatments will work this time. I just can't convince him of that.
Has he talked to a counselor? It may help for Jeff to talk to someone outside of the family. Is he taking anti-depressants? I had a bad reaction to Ativan so I'm not sure if that's acting as an anti-depresssant for him.
It's difficult to imagine his mental state at this time. My relapse was prior to my transplant so I had a different perspective. As long as they gave me options, I was determined to fight like hell. Don't get me wrong, I was in a bad mental state when I first relapsed but I gave myself a time limit for those feelings. Given what he's been through, just be patient and tell him that you're not giving up on him. Hopefully your attitude will spill over onto Jeff.
I second what Kelly said about a counselor. I'd especially seek one who's connected to the transplant center and can counsel him from a point of knowledge and experience. And, yeah, many drugs can have reverse effects on some people. Ativan might be driving him further in a hole. That would be something else the counselor could help with.
But I have a question. How do you know his chances are slim? From only an observational (read "anecdotal") stanpoint it seems to me that many folks with sibling matches wind up relapsing. So isn't the plan to get him back in remission (not terribly unsual for a second relapse) and get him a MUD? It could be that Jeff's sibling's graft was too similar to his and that a differrent graft would be just what the doctor ordered. Again, I know of no science to back me up on that, but I've been reading these boards a long time.
So, that's where I'd start with Jeff. Get him someone to talk to who can shine a light on the situation and reason with him that the future is unknown.
Hi Guys - Thanks for posting...I was feeling quite glum this morning.
Kelly - I'll be looking into a counsler as soon as we get back to Hershey (tomorrow). He hasn't talked with anybody yet, and I'm not sure if he will be willing to try it, but I am definitely looking into it. Also - Ativan has worked well for Jeff in the past, so I think he is just so far down that the drugs aren't enough.
Tex - You are right, a MUD might be exactly what Jeff needs, and his doctor said that recent evidence (real evidence - not just anecdotal) shows just that. There are times when I can think positively, and other times when I just feel like the odds are against us, but I will keep my spirits high for him.
So far, Jeff has responded quite well to the chemo he has been given, his initial induction took one round of 7+3, plus one round of MEC, and his last remission was acheived with just the one round of MEC...which was followed with DLI. So, the doctor is hopeful that this new treatment will also do the trick. I'm not sure what the protocol is, but the doctor said if we can acheive a remission, or close to a remission, then he will get the MUD tx if a donor is available.