Parkinson’s and chemotherapy

Hello, Welcome to Connect. While we wait to hear from others with Parkinson's who have experience with chemotherapy I thought you might find the following article helpful even thought it's about patients older than yourself.

--- Clinical Challenges: Treating Breast Cancer in the 'Very Old' - Aggressive treatment may still be an option: https://www.medpagetoday.com/clinical-challenges/sabcs-breast-cancer/102555.

@tommyq shared his experience with prostrate cancer treatment while having PD in another discussion here that may be helpful and might have some additional thoughts - https://connect.mayoclinic.org/comment/840082/.

Have you discussed possible side effects of the treatment on your Parkinson's disease with the oncologist?

My husband has Parkinson’s and he is now 7 months out from a bone marrow transplant and the doctors where worried that his tremors may get worse once on the anti rejection meds. The Parkinson’s wasn’t effected by the chemo or anti rejection meds. He is off the anti rejection meds and the only thing he is having now is some low sodium reading for some reason and his oncology doctors are now concerned that his Parkinson meds might be causing some of this. They feel strongly that the cancer is under control so we have reached out to neurologist for their opinion on any of his meds that could cause this. One day at a time.

Hello @jrwilli1,

While you have posted several times in other discussion groups, I see that this is your first post in the Parkinson's support group. Welcome!

I was wondering how long ago your husband diagnosed with PD. Are his PD meds controlling his PD symptoms?

He was diagnosed 7 yrs ago and this is a question now about there usage. We just went up on a medication because the trimmers where getting worse at night but at the same time the primary cancer drs are concerned with some of those meds causing his low sodium. So just as of this morning he fell and we are currently in ER for evaluation. Surprisedly CT shows No dementia or abnormal signs. 🙏 and we talked to neurologist nurse this past Fri so just got an appt for next Tues with their nurse practitioner. So if meds aren’t causing any problems back to oncologist for perhaps chronic graph disease since liver enzymes are creeping up. But as far as the cancer it is supposed to be under control.

Hi @jrwilli1

I'm sorry to hear of your husband's fall, but it sounds as if you got some good reports regarding your husband's PD problems. The fact that no dementia was found is always good news.

I hope that you get some good information when you meet with the neurologist's NP on Tuesday. That is an interesting problem about the low sodium levels. I'll look forward to hearing from you regarding his treatment for both the PD as well as the cancer.

I wasn't familiar with chronic graph disease, so I found this link that describes it, https://www.verywellhealth.com/chronic-graft-vs-host-disease-5204977
Perhaps, @loribmt, might be more familiar with this that I am.

If convenient, will you post again after your husband's Tuesday appointment?

Hi @jrwilli1 @hopeful33250 brought me into the conversation because I had a bone marrow transplant and pretty familiar with Chronic Graft Vs Host disease which happens to most of us with an allogenic transplant to some degree. We need some GvHD for the transplant to be effective.

I’m a little confused after reading some of your previous replies so I hope you don’t mind if I ask a few questions just to clarify.
Your husband was diagnosed with Parkinson’s 7 years ago and has been taking meds for that. He had an allogenic transplant for MDS 7 months ago, so April of 2023.
You mentioned he’s off his anti-rejection meds already?

I guess my questions are about the doctors’ concerns. Is this about the low sodium and what’s causing that? Or regarding your husband’s tremors. Are they getting worse now that he’s off the anti-rejection meds?
Some of meds can cause tremors. Especially meds like Tacrolimus. Once off, those tremors should disappear. But there is then a risk of GVHD. I don’t know the impact this would have on his Parkinson’s. So much remains a mystery in our journeys. But bringing in a neurologist is key at this point.

We all have different schedules for tapering off anti-rejection meds depending on how well the new cells (graft) ‘play nicely’ with the host (our body). The cells look at our body as invaders and like all good immune systems, will do what they can to launch an attack. Basically the new cells want to kill us off…which of course isn’t good for us or the immune system 😵‍💫. So, sometimes people require being on the immunosuppressants longer. I was on for 2.5 years because, as we joke in my house, “The force is strong with this one! 😅)

Anti-rejection meds are very strong immunosuppressants to keep the new immune system suppressed while it’s getting used to the proteins of the new body…to stop the rejection. Your husband apparently was able to get off the anti-rejection meds early in the game but that doesn’t rule out GVHD. It can happen at any time after transplant.
So it’s very important that your husband sees the neurologist to rule out GVHD involvement in this case. The new cells will be trolling throughout the body, looking for inflammation. If they find cause (which sometimes makes no sense to us) the new immune system can create subtle symptoms at first which can escalate into a more serious situation. That can take some sleuthing. It generally is a process of elimination. Sometimes a burst of steroids is given for 5 days in hopes of quelling the reaction.

I’m so happy to hear he’s doing well otherwise and the MDS is under control. Our BMTs are an amazing gift of a second chance but we do need to be vigilant for possible side events. Will you let me know now your husband’s neurology appt goes?

Oh I’ve tried several times to write this but keep getting interrupted and then it falls off. So I’ll try this again. He just back from MRI and very confused. So oncologist feels like the low sodium might be from his long time use of carbadoba and recent addition of artane. So want to consult with neurologist but they are at a different hosp. They are concerned that his liver enzymes are creeping back up and he may have some chronic graph va host. He has been off both the anti rejection meds and graph vs host meds for a month now. He had his transplant Feb 15 this year. And doing for the most part very good. His donor % is 99.6 in one area all the others are 100% and a bone marrow was checked when his % dropped to 89% just prior to graph vs host came about and no signs of cancer. This hospital’s neurologist is just really concerned with his confusion right now and between all the doctors today. Wow I think they are checking everything they can right now because his speech doesn’t make sense. I’ll keep you both informed of the rest of the story. Boy it helps just to write all this down as well even though I’m rambling. Thanks

@jrwilli1 Writing really does help collect the thoughts, doesn’t it? I’m happy this is helping you and by all means keep writing! It can be cathartic as well as helpful for remembering all the little details and sometimes it helps bring the whole picture together!

I’m sorry your husband is having this confusion and speech issues. That’s a little scary for both of you. Low sodium can really have some definite side effects so his doctors will want to make sure that level is brought back up. Just for a little reassurance, from experience with a friend of mine, her low sodium caused similar reactions to your husband with confusion and garbled speech and a few other symptoms. Total reversal now after rebalancing her electrolytes.

Those pesky liver enzyme numbers were a bane to my existence too! Always creeping up any time there was a little hiccup in my progress. The reassurance I got was that gvhd of the liver is rare with a SCT. The liver numbers are usually elevated by the meds we take, not so much by gvhd after transplant. So fingers crossed this is the case for your husband too. My liver numbers at 4 years out are right down the middle and super healthy. Our bodies have amazing regenerative powers. Your husband is still a ‘baby’ with his new immune system so things won’t be perfectly stable for a bit yet.

Yes, please keep me posted on the rest of the story! I’m here for you any time if you have questions. Hopefully the rebalancing of his sodium gets your husband back on track but it’s a really good thing to be checked by the neurologist.

For you…take a deep breath and exhale…you’re doing an amazing job being a caregiver for your husband. It is not an easy task. I’ve watched my husband age through all of my transplant excitement. We wouldn’t make it without our super heroes in the wings. ☺️

Yes, please keep us informed as you can, @jrwilli1. Lori and I both know the benefit of writing and sharing our stories. When we share our stories, we gain strength because we realize we are not alone in the journey.

How is your husband feeling today?

Well, I have him home and after a million dollar work up and no real answers to why he fell or why he is so confused. CT, MRI, and EEG of his head are all normal. His sodium was 128-130 so not real low. No urinary infection. So at this point they are just going to monitor him with clinic visits and he will continue taking his Parkinson’s meds and other meds as usual and if sodium levels aren’t able to maintain themselves while lowering dosage they feel he needs to see a urologist to check out the kidneys. My main concern is how the platelets are dropping and liver enzymes creeping up. They are going to do another who’s who test tues at our clinic appointment and then we see our neurologist Tues afternoon to reevaluate his night medications that might be lowering his B/P and causing him to perhaps fall at night. A lot of ifs.