I'm just getting started on the research, we haven't had our transplant consultation yet but I have a couple of questions.
My boyfriend, Fran, had AML in 2009 and has been in remission since then. He was treated with one round of induction and 3 rounds of consolidation. He has relapsed, we got the diagnosis a few days ago. During the initial consultation with the oncology team, treatment was discussed and it *sounds* like Fran will have a round of induction and then have a bone marrow transplant. Could it be that rounds of consolidation won't be done? I understand that the doctor can answer that one best but I just wanted to know if others had experienced it this way.
In reading up on others' transplant experiences it seemed that a patient goes straight from induction to transplant, BUT they have a donor lined up. The team made it sound like Fran would have induction, then transplant, but we don't have a donor lined up yet. From last time, we know that one sister is not a match but he has other siblings that still can be typed. It's fine if they aren't a match, it would just go to the next level, looking for a match in the donor banks. But surely this takes time, I guess I don't understand what Fran will do while they're looking for a match. Induction has already been scheduled, we go in this coming Thursday.
Question about pets. Last time, we didn't have any, this time we have a cat. She is indoor only, so that reduces one source of problems (bringing the outdoors inside with her). It's possible that we live close enough to the transplant facility and that Fran can be at home after the first few weeks after transplant. We live in Seattle, Fran will be treated again at UW/Hutch/SCCA. Is having the cat while he's at home ok? Again, I understand the doctors can answer that one, I'm just looking ahead. We've had her a year and a half so Fran's immune system is already used to the cat, I'm hoping she can stay but understand if we shouldn't have her around when he's recovering. He probably wouldn't be allowed to do litterbox duty.
I'm sure I'll have more technical questions as we go along, I'm just getting started wrapping my head around this.
They'll start searching for a donor soon if they haven't already started. It takes 2-3 months to find a donor - if his siblings are not a match. If it takes a while to find the donor after he's in remission, they'll want to do consolidation to keep him in remission. If they find a donor though, he'll go straight to transplant. It's all based on timing.
They'll let you know about your cat at the Hutch. I think they'll say the cat's ok because as your said, his immune system is used to the cat. He won't be able to do litter box duty for a year after the transplant. Not only that, but any other house cleaning or yard work will be off his list for a year.
Thank you Kelly
No house cleaning for a year? Oh my. He's not going to handle that well. We went through "no house cleaning" when he was going through chemo but that was just for a few months. He didn't handle it well at all. Yes, yes, I know "he'll have to", but it's a stressor.
So if that's the case, and I'm assuming it's because he can't be around stirred up dust et al, I guess we'll have questions about his future employment. There was a job he was interviewing for and they like him enough to try and keep the job open until he's done with treatment. However, it's in a warehouse, selling old high end auto parts. Is that off the table?
If it takes a few months to find a donor and he goes through consolidation, will he have to go through induction again right before transplant? Or will consolidation be enough to take him to "zero"? They haven't mentioned radiation, I don't know what the conditions are for radiation vs. no radiation.
Kelly pretty much said it all. However, I completely skipped consolidation so I might have some insight on that. Still, I think Kelly got it right. If it takes awhile to get a donor, they'll probably put him through a round of consolidation.
With me, I had MDS prior to my AML and my counts recovered so slowly, my local onc thought that putting me in consolidation would actually slow down the process. So, she got me on the fast track to SCT.
I did relapse and didn't know until I showed up for my transplant. So, I got to go through induction at UWMC and then was held over and put directly into transplant protocol the moment I completed the induction protocols. Not a happy occurrence but I made it through and did very well with my SCT.
No, they won't want him around dust while he's on his immune suppressant. There is far too much chance that there would be some kind of fungus in there that could start a fungal infection with her. Also, no remodeling. He won't be able to risk that the contractor might rip off a board and send little fungi all over the place.
But when one considers what we've just done to our bodies, well, the limits seem reasonable and kinda liberal. Hell, we're allowed to walk among people with only temporary concerns. That we're not put in a bubble for years is pretty amazing if we think about it.
Thanks Tex and Kelly.
Tex, I remember that you were treated in Seattle but I don't recall if you stayed at UW/Hutch the entire time of your transplant? They have already indicated that Fran will stay for a few weeks and then be able to go home. I believe we live close enough that Fran won't have to stay at an apartment, although traffic is becoming a concern.
The doctor mentioned daily trips to the hospital. Is that something for daily checkups? Is it just a short appointment or would he be dropped off for all day? Would someone else have to drive him? I'm trying to figure out that obstacle. I work full time, plus this time around I have a part-time job and the logistics of getting him back and forth are a stumper.
I don't know, I know they wanted me to live within 15 minutes of UW in case I needed to hit the ER. A lot of folks do but I managed to avoid that until my one-year checkup when I fell and broke my shoulder. I guess I was destined to have to get in there once.
However, SCAA is growing, it seems, all the time. It could be they've got a relationship with a reliable ER close enough to your home.
Daily checkups post transplant won't be necessary for long, I hope. Some days he will have clinic days and some days they'll just want to check hi blood. Then there will probably be days when he needs to be on campus most of the day having images done. But, as with everything related to this, each patient is a completely different story. Probably the best thing to do is stay loose and figure out each day as it approaches.
I'm pretty sure Seattle has some kind of medical transportation buses or something. At least it seems like Seattle's the type of town that would. Talk with a social worker at the Hutch and see what can be worked out.
I was also treated at the Hutch. It probably depends on how close you are. There is a Pete Gross house for longer term stays. They're apartments with 1 or 2 bedrooms. There is also a Pete Gross house for short term stays - more like hotel rooms with a kitchenette. Both places provide transportation to the clinic and hospital.
I had a lot of days with 1 or 2 appointments that ended up being a full day due to whatever came up. Just talk to them and lay out the situation. They'll lay out the best options. They also have a volunteer service that may be able to provide transportation.
Tex and Kelly, you two are cracking me up.
Which I sorely need right now.
I can't thank you both enough for your help, no matter how small it seems. Having a few answers to questions I can very well ask later helps with the jitters.
More later as we actually get started. Tomorrow Fran's Hickman goes in and induction starts. And off we go.
Glad we could make you smile. I think he and I should go out on the road as the comedy team of Dan & Rickles. Insult comedy in stereo.
I responded to your latest post on the AML forum. Things are going to work out. Sometimes it just takes a blind leap of faith. (Oooo, now I'm playing Wheel of Fortune).
These articles may help you guys! Just thought I'd share as I often post in these communities as a lymphoma patient.
prayers and love!