Caregiver of acute myeloid leukemia patient

Posted by lel @lel, Jul 26, 2020

My husband was diagnosed with AML back in 2015. Since his initial treatment with chemo, he has been on 3 different clinical trial medications to keep him in remission plus a stem cell transplant from an unrelated donor back in 2017. He started experiencing chronic GVHD in June of 2018 and we have been battling rejection issues for 2 years now. His oncologist has told us he will not get any better and our only hope is if they come out with a trial drug for GVHD. My husband was 66 when he was diagnosed.

I would like to hear from anyone who has gone through similar experience as ours and see how they handled their situation. The GVHD has really impacted his eye sight and hearing to the point where his quality of life has been severely impacted. I would like for my husband to go to Mayo to see a team of doctors that are all there together to see if there is anything further that can be done to improve his quality of life.

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

bradmm | @bradmm | Jul 27, 2020

Just wanted to be included. My heart goes out to you, lel!

lel | @lel | Jul 28, 2020

In reply to @bradmm "Just wanted to be included. My heart goes out to you, lel!" + (show)

Thanks bradmm. If you want to know anything about when my husband went through his SCT, please don't hesitate to ask anything.
Best wishes to you and your wife.

lel | @lel | Jul 28, 2020

In reply to @loribmt "I’m so sorry to hear of your husband’s battle with Chronic GVHD. Yes, please, seek a..." + (show)

@loribmt

I’m so sorry to hear of your husband’s battle with Chronic GVHD. Yes, please, seek a second opinion for his situation at a Mayo Clinic. My husband and I cannot say enough about the amazing treatment, the quality of care and the incredible brain-trust of the entire staff we encountered at Mayo-Rochester. I was there for treatment and follow up for 4 months last year with my SCT.
My transplant was one year ago, June 2019 following a 4 month chemo regimen for AML, diagnosed in February 2019. While I’ve not had any long term issues to date, over the course of this past year I have had 2 situations which required a quick response and aggressive treatment which brought them under control.

The advantage of the Mayo Clinic is that all of the top specialists in their field are in one place. The cross-departmental relationships are seamless...they all work together relentlessly to find a solution. As my SCT doctor said, “I have a thousand “phone-a-friends’”. He is a brilliant hematologist/oncologist- BMT/SCT being his area of expertise, but is the first to admit he is not a specialist in rheumatology or neurology. So when I had 2 severe and unusual issues pop up requiring those specialists, he did not hesitate to bring in other doctors in the correlating field.
To give you an example, both of my GVHD episodes were unusual as they did not fit into the ‘normal’ graft vs host complaints. The first was a debilitating tenosynovitis in both wrists and hands. My SCT-team/doctor immediately conferred with a rheumatologist who quickly brought it under control through medication.

In the second episode, for some unknown reason the new cells crossed the blood/brain barrier and decided to attack my spinal cord. The inflammation caused me to lose feeling from my waist to my toes. After an MRI at my local hospital showed inflammation on my spinal cord, I was rushed back to Mayo and in their hospital for 1 week. Upon my arrival my SCT doctor was there as well as one of the top neurologist in the country. Within 2 days I was up and walking again. After an aggressive treatment of meds, 6 months later I am back to normal with no lingering damage to my spinal cord.
Early in my recovery I also had a minor anomaly with my eyes which prompted a visit to an ophthalmologist at the clinic as well.

The clinic is so large with doctors and researchers in every imaginable department experienced in treating GVHD. I wouldn’t hesitate to set up an appointment with the BMT center.
I hope my experience is helpful to you and should you choose Mayo-Rochester I’d be happy to relate to you any additional information regarding the clinic, where to stay, eat...etc.
Best wishes to you and your husband, Lori.

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Thank you so much Lori for the information. It sounds like you've had a very positive experience with doctors at Mayo. I will reach back out to you if I can talk my husband into going up to Mayo. Good bless and best of luck to you in your journey.

Lori, Volunteer Mentor | @loribmt | Jul 28, 2020

Thank you, @lel. It’s certainly a journey like no other. We have to keep a sense of humor and a sense of adventure through all of this unchartered territory. I do hope you can encourage your husband to at least talk with a BMT specialist at Mayo. Even a video chat to save the trip. Obviously there are no guarantees but he has nothing to lose by having this second opinion. As my husband says, “The bench is deep at Mayo”. There are doctors in every discipline there ready to work for answers to the toughest issues. My best wishes to you and your husband. Yes, please keep in touch. You’re always welcome to post to my private message box as well. ☺️

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