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Rare acute leukemia, both ALL and AML (mixed phenotype acute leukemia)
husband diagnosed with rare acute leukemia. was set for a bone marrow transplant but his cancer relapsed. they are now trialing different chemotherapy and potentially a new oral medication the FDA just approved. we are seen at mayo clinic since we live here. We have been told we may need to be sent to MD Anderson in Houston TX for clinical trials to get him into a full remission. I work at mayo clinic Rochester and my husband is a veteran. we are wondering what support systems are out there and if we need to go to Texas how can I keep my job at mayo while being off work that long. they said we could be there 1-2 months.
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Hi @liz21054 I’m sorry to hear about your husband’s relapse and a delay in his transplant. I had my transplant for AML at Mayo-Rochester and the doctors/staff there are amazing. Hopefully your husband will be able to go ahead with this after his next round of treatments.
I’m wondering if you can speak with a social worker at Mayo in the transplant department. They are so knowledge and usually the go-to person to help with suggestions for financial and support systems.
I have great reference site in a discussion I started a while ago with information about the nbmtLINK. (National Bone Marrow Transplant Link). It’s a website that is filled with resources, podcasts and other information for BMT patients and care givers. Here’s the link to the discussion. The link to nbmtLINK is in the opening paragraph.
https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/
There’s also Family and Medical Leave which provides certain employees with up to 12 weeks of unpaid, job-protected leave per year. It also requires that their group health benefits be maintained during the leave. Might be worth a look.
https://www.dol.gov/general/topic/benefits-leave/fmla
Have you talked to anyone in HR at Mayo to see if there are programs to help you secure your job?
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1 Reaction@lizzyket, I hope you saw @loribmt's helpful post. I'm also tagging fellow members like @drwill @hectorhectoenriquez @redgiles @rjgregory440, who I believe have received care for a blood cancer at MD Anderson and who may be able to offer tips about long-term stays in Texas.
I agree with Lori that you should contact Mayo's HR should you and your husband need to go to Houston for treatment and a long-term stay.
Lizzy, am I understanding correctly that your husband has mixed-phenotype acute leukemia (MPAL) - a rare leukemia - and in your husband's case has characteristics of both AML and ALL?
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2 Reactionsyes he has the mixed phenotype acute leukemia both ALL and AML. We would love any and all information about especially about Houston. thank you so much
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2 ReactionsI have looked into things and talked to HR about leave. Thankfully I've only taken a couple weeks of leave because I've put my foot down on his family to stay here with him while I'm working. I'm trying to save the FMLA for potentially going to Texas and for when he may need my help more (he's doing well physically now). I know 12 weeks seems like a long time to most but with a rare form of acute leukemia it's really not that long... this is a very long road for us. my job is also supplying us with health insurance so I want to do everything I can to keep my job. This is why I've told his family they have to help. The income has also eased a lot of the financial burden so that we can stay in the same home and afford our mortgage . thank you for your help
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1 ReactionYou have a lot on your plate right now and asking your husband’s family to help is the absolute right thing to do! This is when family needs to step up and help out…and it’s not too much to ask! Good for you! ☺️
I had a bone marrow transplant that required my husband and I to relocate to Rochester for 4 months. So I can truly appreciate what you’re going through with the time commitment, logistics and the responsibility of being the caregiver. The difference is that we were both retired at the time and our jobs weren’t being affected. For you, that is all an added concern.
Hopefully all the ducks get in a row soon and your husband can get into the trial program if he needs it. Is he on continued meds right now?
feel free to PM me would love to stay in touch
Hi @lizzyket, please note that I removed your personal contact information as per the Community Guidelines (https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/). We recommend sharing personal contact information using the secure private message function rather than in the public forum.
However, I'd also like to point out the benefit of sharing here in the support group where you all receive support and information from several people and learn from each other. And other people with a similar diagnosis will join in. 🙂
@lizzyket -- Lizzy, I was diagnosed with MGUS about 2 1/2 years ago by random bloodwork with my PCP. Was already in the MD Anderson system. I had breast cancer 26 years ago and I have my annual mammogram at MDA. When MGUS was diagnosed I began seeing Dr. Saini - annual bloodwork & urine collection in August. So far my status has not changed. I live in Spring Branch (north of San Antonio). We also have a home near Hobby Airport, so I have place to stay at when I am in town for visits to MDA. For long term stays, you might check about Rotary House - located within the MDA system. Message me if I can answer any other questions..... Jackie G
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