Caregiver of acute myeloid leukemia patient

Posted by lel @lel, Jul 26 3:13pm

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.

Hi @lel, welcome to Mayo Clinic Connect. I'd like to introduce you to @bradmm who is also a caregiver. His wife has AML and just recently had a bone marrow transplant. You can read more about their story here:
– Anyone had successful stem cell transplant for AML? https://connect.mayoclinic.org/discussion/would-like-a-stem-cell-transplant-support-thread/

In that discussion, you'll also meet @ckeys @ruttgerbay @kjjjrader @loribmt @tedwueste @tmvanla and @waveg. @tmvanla's husband also experience Graft versus host disease (GvHD) and may have more to share with you.

You mentioned that you'd like to seek a second opinion at Mayo Clinic. You can self refer. Here is the contact information for all 3 locations: http://mayocl.in/1mtmR63

I know that chronic GvHD is rare and has few treatment options. Currently there are some clinical trials at Mayo Clinic https://www.mayo.edu/research/clinical-trials/diseases-conditions/graft-versus-host-disease

Lel, what treatments has your husband had? Is he on steroids?

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I urge you to get the second opinion. The SCT team at Mayo is top notch. Has your husband tried Jakafii at all? The nice thing about Mayo is they work to get to the bottom of issues and do not tend to mess around.

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@colleenyoung

Hi @lel, welcome to Mayo Clinic Connect. I'd like to introduce you to @bradmm who is also a caregiver. His wife has AML and just recently had a bone marrow transplant. You can read more about their story here:
– Anyone had successful stem cell transplant for AML? https://connect.mayoclinic.org/discussion/would-like-a-stem-cell-transplant-support-thread/

In that discussion, you'll also meet @ckeys @ruttgerbay @kjjjrader @loribmt @tedwueste @tmvanla and @waveg. @tmvanla's husband also experience Graft versus host disease (GvHD) and may have more to share with you.

You mentioned that you'd like to seek a second opinion at Mayo Clinic. You can self refer. Here is the contact information for all 3 locations: http://mayocl.in/1mtmR63

I know that chronic GvHD is rare and has few treatment options. Currently there are some clinical trials at Mayo Clinic https://www.mayo.edu/research/clinical-trials/diseases-conditions/graft-versus-host-disease

Lel, what treatments has your husband had? Is he on steroids?

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Thank you so much Colleen for responding to my discussion. I did read through @bradmm's discussion thread. I will check out the websites you included in your note and perhaps discuss with his oncologist the possibility of seeking appointment with Mayo.

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@tmvanla

I urge you to get the second opinion. The SCT team at Mayo is top notch. Has your husband tried Jakafii at all? The nice thing about Mayo is they work to get to the bottom of issues and do not tend to mess around.

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Thank you for your post on my discussion thread. My husband is under the care of a research oncologist at the University of Chicago Medicine and the treatment he has him on for the chronic GVHD is steroids and ProGraf. We have not heard of Jakafii. In order to keep his leukemia in remission, he is on Imbruvica. They have tried to cut back on steroids this summer to help with the side effects but we have not noticed any difference in his condition and the doctor told us we probably won't see any. If we can just get some relief for his eyes and ears, his quality of life would be so much more tolerable. He has dry eyes, constant irritation, light sensitivity and has to use a magnifying glass to read his computer screen. He doesn't try to read or watch TV because his eye sight is so poor. He wears hearing aids but he still can't hear normally.

What kind of issues has your husband experienced and does he have chronic GVHD?

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Thiamine requires enzymes from magnesium to change it to it's active form. A deficiency of magnesium results in a thiamine deficiency.Search on "krispin magnesium" for a list of causes for magnesium loss. Thiamine deficiency impacts vision and can be a contributor to dry eyes. Benfotiamine is a fat soluble form to investigate as it applies to macular degeneration. Also search on "Thiamine Deficiency in Stem Cell Transplant Patients: A Case Series With an Accompanying Review of the Literature". Flavonoids may offer a positive effect on imflamation and leukemia. Check into resveratrol from muscadine grapes and kaempferol, quercetin and fisetin.

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Thank you so much for posting your comment. My husband has had several magnesium transfusions and takes magnesium supplements. One of the side effects of the rejection medication tacrolimus depletes magnesium so the doctors keep a close watch on his magnesium level. I will look into the case study you mention as well as other items you stated. I have never heard of kaempferol and fisetin – these are new to me. Thanks again for your suggestions.

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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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You’ve had quite a journey Lori! I’m glad you are doing so well now. It truly gives hope.

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@lel

Thank you so much for posting your comment. My husband has had several magnesium transfusions and takes magnesium supplements. One of the side effects of the rejection medication tacrolimus depletes magnesium so the doctors keep a close watch on his magnesium level. I will look into the case study you mention as well as other items you stated. I have never heard of kaempferol and fisetin – these are new to me. Thanks again for your suggestions.

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Please note in krispin the magnesium high absorption forms. Krispin's site also has a section on potassium that should be of interest. Search on "nothing boring about boron". It helps increase magnesium absorption and retention. I believe 3 mg a day as a maintenance dose. Contact a nutritionist for more appropriate levels for your husband. Also note it's effect on vitamin D and a vitamin D deficiency concerning chronic GVDH was reported in " Increased incidence of chronic GvHD and CMV disease in patients with vitamin D deficiency before allogeneic stem cell transplantation" Please take time to study flavoniods and liposomal delivery. In general, flavoniods have low absorption however creating liposomal flavoniod delivery increases absorption and overcomes possible system distress. My wife has myelofibrosis. She uses liposomal vitamin c primarilly to build collagen to prevent bruising and purpura.It allows it to remain at an almost IV level for four hours as opposed to non-liposomals much lower level for thirty minutes. Learn making liposomal supplements like vitamin C. I told a friend in London who has prostate cancer in addition to myelofibrosis about kaempferol and he added it to his vitamin C batch and later when his PSA was tested it had dropped from 15, where it had remained at, to 7!. It amazed his Doctor. I mentioned it to indicate it has a potential. I also encourage checking out "K2MK4 (Menatetrenone) and leukemia". It requires 45mg three times a day. It works well with quercetin. Fisetin along with quercetinand resveratrol has been reported to have a positive effect in senescent cells. Please research "Acute Myeloid Leukemia Produces Senescent Cells to Promote its Own Growth, and is Thus Vulnerable to Senolytics" Don't overlook probiotics and fermented foods for gut health. Bad bacteria produce usease encourage you to search on " Bacterial Urease and its Role in Long-Lasting Human Diseases" I have sent the above posting and the previous one as well to make you aware of areas that could help your husband. Always consult your health care professional before using any supplement.

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@waveg

You’ve had quite a journey Lori! I’m glad you are doing so well now. It truly gives hope.

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Thank you! I am doing amazingly well. I feel 95% like my old self before all of this excitement of last year. Pre-transplant my doctor and team had said there would most likely be issues ahead at some time or other with GVHD. That no one can predict what might happen but if and when it did they’d take care of it and they have! Their quiet, yet confident assurance that this can all be managed gave me comfort. I sincerely never lost a night’s sleep during any leg of this journey. I know you’re coming up on your transplant. It’s daunting going into this. But it is totally doable and definitely worth the effort. Hugs!

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

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@bradmm

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

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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.

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@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.

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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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