I posted this in the caregiver's lounge as well, so forgive me if you'vealready read this:
I'm new to posting here, but I've been a long-time lurker on these boards. I came here a lot when my boyfriend (now fiancee) was diagnosed with ALL in October of 2007 - it helped a lot to read other people's experiences but I wasn't prepared to post myself.
He went through the Dana Farber protocol, going into remission in the first induction period. Then he went through the remaining 2+ years of consolidation & maintenance therapy. There were a lot of bumps in the road, but all in all, we got through it & he was in remission for 3 years. Things were going so good for us - he was back to work, we took a couple of great trips, got engaged & the biggest surprise - I found out I was pregnant in July. I'm due in 6 weeks.
2 weeks ago he started feeling really crummy. Achy joints, fevers, sweats - we hoped he had the flu, but I could tell it was something more. We went to his oncologist last wednesday & he got a bone marrow biopsy. Last friday he was called back to the Dr's office & we were told this is a relapse.
He was admitted yesterday & started his induction - this time he's doing Hyper CVAD - which I don't really know much about. I'm glad they're doing a different protocol though, since the first one obviously didn't work. So now I have high hopes that he goes into remission again quickly - but I'm keeping an open mind & understand that might no happen. His Dr has promised that no matter how, they'll get him to my labour if he hasn't been released from the hospital by that time. I'm feeling a lot of different emotions these days, and I've had to stop myself from googling since there's very little on ALL relapses in adults out there & what I have read has left me feeling scared. Everyone's story is different, I can't base what may happen on what I've read on the internet.
On one hand it's helpful that we've been through this before - we feel more prepared for what lies ahead of us, but this time is going to be different as I'm going to have a newborn to take care of as well. Luckily we have lots of family & friends who want to help us, but even with help, being a caregiver can be so difficult & exhausting. This is my first child - so I also have some anxiety about that, as well.
Anyhow - I just wanted to say hello & introduce myself. I'll probably be posting here quite a bit, since everyone here understands so well what a beast leukemia is & how hard it is to watch someone you love have to battle & suffer through it.
Hi there, yes, thanks for replying. It's my understanding that they are pushing for a transplant this time. He has 2 siblings that are going to get tested to see if they are a match. He's at Princess Margaret Hospital in Toronto, which is an amazing, amazing cancer hospital - we have complete trust in them.
I'm sorry to hear that your fiancee has relapsed.
First, let me tell you that our jouneys are different, but also similar. My husband, who is 24, underwent Hyper CVAD and went into complete remission within 5 weeks of start. He has a full sibling match and gets his transplant tuesday. He is at Mass General Hospital in Boston. They are incredible. Here is the kicker, though; I am also pregnant. You are the first person I have found on here who is also expecting. This is our first, and probably only, child (due to the fact that the TBI causes sterility). I was 12 weeks pregnant when nate was diagnosed, and am now 22 weeks.
Hyper CVAD is a very aggressive, very effective treatment option. If you find a donor, go for it.
Best wishes, and you're not alone!
I know what you mean about not being able to find other women in our situation - I thought for sure there'd be an online support group or something & when I couldn't find anything, it made me feel... I don't know - more scared? More helpless? So it's helpful to see another mom-to-be who's going through something similar. I was posting on pregnancy forums a lot, but now it's hard because I don't want to be the dark cloud, and it's also a little difficult for me to read about other women fluttering around, getting things ready for baby & getting foot rubs from their husbands. These things are so far from my mind right now! I'm trying my best to keep the joy of being pregnant & our baby in mind, but it's so hard. Luckily she pokes me good & hard to remind me that she's still in there, happily growing. When are you due?
My due date is 5 1/2 weeks away & he just started induction therapy on Friday - so there's a small chance he'll be out in time for the labour, but I know there's a big chance he won't. Luckily, the hospital I am delivering at is connected by tunnel to the cancer centre he's in! The Dr has promised they will get him there no matter what.
So tomorrow is the big day? I will be thinking of you - I really hope everything goes well for the both of you. Sounds like your husband is young & strong & hasn't had to go through tons & tons of chemo before the transplant, which will work in his favour.
I am sorry to hear about the relapse - but going on the Hyper CVAD may be a good thing. I just finished my last round Jan. 20. I went into remission after the first round. Be prepared - Hyper CVAD is tough! It took me over 10 months to finish the 8 rounds. This was due to extrememly low blood counts, infections, etc. It will kill the cancer cells, but also kills the good cells.
Hang tough. I can't begin to imagine how hard this is on both of you - especially with a baby on the way!! Just keep the faith, stay positive, and do not google. There is way too much stuff out there and like some one pointed out to me, it is also 10+ years old!!