Any help for caring for husband w/Leukemia & Parkinson’s?

Hello @kerstij. Oh my goodness, being a caregiver is a most difficult labor of love sometimes. If your husband is showing signs of GVHD, I’m assuming he’s had an allogenic stem cell transplant for his leukemia.
This is something you need to report to his BMT team immediately. If he’s not taking his meds, such as tacrolimus this can allow the important tacro trough to change below a therapeutic level, causing some very serious side effects.
I know the sheer volume of meds we’ve had to take early on in the transplant journey but it’s not forever. Water is key to flushing our kidneys and body of some of the toxins, besides the all important hydration. I know I’m preaching to the choir here because you’re well aware…

How long ago was his transplant? What type of GVHD symptoms is he showing?

Have you talked to his team doctor or NP to talk about possible depression? Has he had difficulty eating due to nausea? When was his last followup with his BMT team?

Hi Lori,
His transplant was August last year. 100% match from his sister. Things were going good until the “chronic GVHD” started to appear this year. He’s being treated at Fred Hutch Seattle & they’ve been great. They’re aware of what is going on as of Monday.
Up until a few months ago, dealing with the Myeloid Leukemia & his Parkinson’s was going well. Then the GVHD started presenting itself & the Parkinson’s (I’m thinking) was also reacting/progressing with changes of meds.
It’s really messed with his head, he’s always been very active & now he’s fighting the fact that he needs to take a couple steps back but he won’t. Yesterday he fell on the staircase hitting his head on the wall, broke the skin a little but never lost consciousness. He’s been dizzy the last few weeks but…..this is…maybe because he WON’T drink the amount of water that they highly recommended due to his liver status.
He’s extremely irritable, won’t eat, can’t sleep & is blaming me for reminding him that he needs to take his meds! I got up at 2am this morning & took the nighttime meds away from where I always put them & he found them at 3am (or so) & took them. I was up at 4:30am & knew that I was going to have to adjust all of the meds the rest of the day 😣
I’m doing the best I can but it doesn’t seem to be good enough…just feeling lost. He’s 67 & I’m 63. Very hard to pull off all nighters lately.

This is not an easy situation for you or your husband. You’re being very hard on yourself! Think about the stress and uncertainty that have been your constant companions for the past couple of years. It sounds like your husband had AML and then the transplant. I went through the same thing and watched my husband, my caregiver, age right before my eyes during that odyssey!

Watching someone you love going through all the treatments and then the process of transplantation and recovery is a challenge that’s difficult to describe unless you’re going through it. You suffer right along with them trying to offer comfort, finding foods they can eat, keeping track of meds and appointments. It’s exhausting.

This second chance at life for your husband doesn’t come without a hefty price tag of the abrupt upheaval of life as you’ve known it for the 40 years you’ve been married. Nothing can prepare a couple for this. So please, give yourself some grace. You are doing the very best you can!

I am sorry to hear about the gvhd making its presence known. The meds used to control that may be having an impact on the Parkinsons. It’s always a balancing act with meds. I’m glad his BMT working with him on this. But it is concerning with the dizziness and instability.
Being irritable is troubling too, especially since you’re taking the brunt of the grumbles.
There’s another member whose husband had his transplant almost 2 years ago. Her husband also has Parkinson’s which makes some days more difficult and concerning than others. Being able to commiserate with someone facing the same challenge might help you not feel so lost. I’d like to introduce you to @jrwilli1.

Since you’re new to the forum, I’d also like to give you a couple of links to discussions with other members who have had BMTs and/caregivers. Don’t hesitate to jump into the conversations.

~My bone marrow trnasplant story. Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
~~~
Chronic GVHD. Let’s talk about it!
https://connect.mayoclinic.org/discussion/chronic-gvhd-lets-talk-about-it/
There’s also a great website for all things transplant. The link is in this discussion https://connect.mayoclinic.org/discussion/bone-marrowstem-cell-transplant-informational-website/

If you don’t mind sharing, what are your husband’s gvhd symptoms?

@kerstij Welcome to Mayo Clinic Connect! I think you have found what you were looking for—the great Lori!
There are lots of people with great ideas. Hopefully, some will join the discussion!

I know exactly what you are talking about. It is very hard dealing with one disease let alone more than one. The Parkinson’s doesn’t know how to handle another health problem so it acts up. At least that is what I was told by our neurologist. Check out some of his medicines because they might be making him dizzy. We had to stop propranolol because it was lowering his blood pressure. He also had the GVHD but just acute and has been left with low sodium for which he has to take meds. You get rid of one med and get another. He also got CDiff during that time so he was an absolute mess. I was at wits end and had to call in reinforcements. He couldn’t hardly walk to bathroom and was so weak. I got a night person to help out and a bed alarm so they knew when he was up. He was very confused and when he did get better he was very upset with me for this. But I couldn’t do it on my own. No sleep isn’t good for you. Please give yourself credit for taking such good care of him. I would recommend when he can get out to check out some Parkinson’s exercise classes. He has meet so many other people and really looks forward to going to them. There was a point when he couldn’t drive because his platelets were to low and he was devastated but I drove him weekly. Now he can drive to his classes. Hopefully, this is your last setback. Each day at a time. You can do this. Sorry for book

This is kind of new, food not tasting right so…they’ve prescribed mouth rinses due to what they say is common for Chronic GVHD. Redness & sensitivity in the mouth, textures of food…Another thing they/we are trying to figure out is about his vision…he has basically no peripheral vision & his eyes feel like they have sand in them as he describes it. We have prescription eye drops, we have comfort drops & overnight gel drops but…again, he won’t let me apply them regularly. He’s a wonderful proud man that is determined to fight both illnesses his way but it’s definitely not working & it’s tearing me apart right now. Other symptoms of the GVHD is a rash that’s developing on his left forearm. It looks like a big purple birth mark that some people have. Fred Hutch (F/H) as I will refer to them from now on is keeping an eye on this too. He also had lower back surgery to remove a cyst that was causing him extreme pain removed just in September & they found a herniated disk under it that was blocked by the cyst in both CT & MRI. They repaired that. He also has what presents as spinal stenosis at the base of his neck which is causing him a lot of pain but the neurosurgeon is weary of doing another surgery right now due to the Prednisone he’s on.
Wow! I REALLY appreciate the outreach right now. Doing this is all new to me.
I’m taking things one day at a time right now.
I can answer more questions tomorrow but I need to get his evening meds together & try to get a few hours of sleep myself, if I can.

Hi there, thank you for your info. This is very new to me reaching out like this.
I’ve….. had a tough time trying to explain things even to family. All I can do is give them the facts of what’s happening. I’m not new to the caregiving end of things, I think I was just being primed for what is going on now but I’m realizing that nothing can really prepare us for whatever happens tomorrow.
He has appts next week with more tests so…we’ll see how that goes. I guess I just needed to vent my thoughts.

Oh please do vent. Sometimes you need to let it out. Lori and the gang have listened to me plenty. 🙏🤗

Thank you!!

Hi @kerstij, As @jrwilli1 has said, Please do vent!! We have a whole BMT posse of patients and caregivers here ready to be your lifeline! I’ve never been one to ask for help either but having a BMT is a walk through totally unfamiliar territory and it can really help to have people to reach out to, vent to, or commiserate with who know exactly what you and your husband are facing. There is no shame in asking for help.

Which leads me to your husband. He sounds like a remarkable man whom you mentioned is strong and proud…wanting to fight and basically recover on his terms. He’s certainly been through the wringer with his cancer, the BMT and his back surgeries.
Recovering on his own terms may be the fly in the ointment right now. A BMT is a different animal and it doesn’t have any hard and set rules for recovery except to absolutely abide by the guidelines set for us by our BMT teams. That means adhering to the strict schedules of our many meds, drinking copious amounts of water for hydration and detoxing, trying to get in the recommended amounts of protein, which admittedly is a challenge, etc.
The other difficulty is when the patient has been healthy and active most of their lives and then faces a leukemic event that requires a bone marrow transplant, life as they know it changes abruptly!
The fight is to return to robust health and get stamina back. We think it’s like recovering from the flu or a cold. It isn’t!! This is a very traumatic event both mentally, physically and spiritually(emotionally). It takes months and months to recover. And I swear, some days we feel super human only to be forced back to feeling like an invalid for a few days. It’s a roller coaster! I’m 5+ years post and most of the time feel like my former energizer bunny self. But if I over do, boom…I’m back to 2 days or so of vegging out. I’ve learned it’s not a setback. It’s my body talking sense into me…letting me know I’m not super woman and to just slow down!

The sore mouth gvhd is something that crept up on me about 2 years post transplant. My go-to now is liquid Dexamethasone. When I have a flare I take 2.5 to 5 ml liquid in my mouth. Hold it there for up to 5 minutes then spit it out. I don’t consume the steroids. It’s used topically, though there will be a small amount that is absorbed by the oral tissue. If there are small lesions that develop on my tongue. They get spot treated with a Tacrolimus based ointment. That seems to control things.
It helps to avoid hot, spicy foods. Acid foods, such as condiments, pickles, salsa. When I’m having a flare-up, children’s flavored toothpaste works better than anything with mint.
For a short period of time I had the gravel feeling in my eyes. I ended up with Systane nighttime lubricant instead of the gel. But it has to be applied religiously every night right before sleep. Intermittently, it didn’t work well. If your husband’s issues persist there are also speciality Autologous Serum Eye Drops made from your husband blood serum which can be very helpful. I know of several people using these drops.
I hope his sight starts improving and his gvhd issues slow down. Initially, even though I had a perfect match, my new immune system was hyper active. My doctor put me back on Tacrolimus to prevent me from having to use steroids for months. I took tacro for 2.5 years. I now take no meds except for the occasional flare of oral gvhd if I make bad choices in foods! LOL. I confess…dark chocolate calls to me and I must listen. But then I pay for those thrills. 😂
Drop by those other sites I posted earlier. You’ll be able to meet more recent chimeras such as @katgob, @mary612, @dwolden and a host of veterans safely navigated the BMT mine field. 😀