Spouse with Primary CNS Lymphoma

Posted by sheilaray @sheilaray, Mar 17 1:57pm

My husband was diagnosed with PCNSL in December 2025. He completed 4 cycles of MTR and then an MRI showed half the tumor was not responding and was growing. He was switched to MATRix and did 1 cycle of that with the 2nd cycle to start next week. This cycle was very hard on him.

I'm a 2x breast cancer survivor still actively in hormone therapy treatment with anastrozole. I'm really struggling with trying to keep up at my job and help my husband. All of my research seems to say I'm suffering from caregiver burnout and anticipatory grief. My husband can take care of himself, but he can't drive. Although, over the past week he has gone downhill physically. Also, he mentioned he doesn't know if he can do more treatment.

It seems like small things are impossible for me to handle. Any "hiccup" at home or at work nearly sends me over the edge.

Are there other spouses on here that can share their journeys?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

cottrell | @cottrell | Mar 18 12:22pm

My husband was diagnosed with this 6/2024. His tumor responded well to the methotrexate but he was only able to complete 7 of the 14 treatments due to kidney injury. This type of cancer is a lot to process. You are in the early stage and are probably shocked by this diagnosis. I was. My tips would be give yourself grace, keep an journal of your appointments (helps keeps things organized which brings peace), accept help gracefully (maybe friends or family can drive your husband), take things one day at a time and find someone you can talk to either a good friend who listens or a counselor. Your husband may need a counseling too. Both my husband and I have a strong faith which really helps and we talk pretty often about our fears and feelings. We have grown even closer during this journey. I also focus a lot on the daily blessings of life and try to savor every moment. My husband will be 80 in September, rides his e-bike 3 times a week and plays golf once a week. I wish you the best on your journey and hope that you find the strength and support you need.

Lori, Volunteer Mentor | @loribmt | Mar 18 8:10pm

Hi Sheila, Oh golly, you and your husband are both having to deal with a lot right now. You have your own health issues and your husband has been recently diagnosed with Primary Central Nervous System Lymphoma. Since we do have other members in the forum with that diagnosis, I’m going to post a couple of links for you so that you can talk directly with them.
- Anyone diagnosed with Primary Central Nervous System Lymphoma? https://connect.mayoclinic.org/discussion/primary-central-nervous-system-lymphoma/

Also, here are the results of a search for CNS in Connect. Feel free to pop into any conversation! https://connect.mayoclinic.org/search/

My heart goes out to you with experiencing caregiver burnout. It’s awful to feel so overwhelmed and burdened and then there’s the guilt. I’m raising my hand in an "I’ve been there" t-shirt. Being stressed to the max doesn’t allow for any down time for personal healing.

You are not alone in this feeling. Of course, Connect has a support group for Caregivers - to the rescue. https://connect.mayoclinic.org/group/caregivers/

Are you able to find any time for yourself to practice some mediation or escape with a hobby, walking, grandkids, etc? Speaking with a therapist can be helpful in developing some self-help coping skills - actually for both you and your husband. Would this be a possibility?

sheilaray | @sheilaray | Mar 29 8:11pm

In reply to @cottrell "My husband was diagnosed with this 6/2024. His tumor responded well to the methotrexate but he..." + (show)

@cottrell Thank you for this. We have had many ipen conversations as well and I’m working daily to trust God and give my worries to him. Today, my husband has said he wants to stop. He’s so miserable. I support him completely, but im heart-broken.

sheilaray | @sheilaray | Mar 29 8:13pm

In reply to @loribmt "Hi Sheila, Oh golly, you and your husband are both having to deal with a lot..." + (show)

@loribmt Thank you for this and the links I will check out. I’m now trying to cone to terms with my incredible anticipatory grief.

cottrell | @cottrell | Mar 30 9:48am

In reply to @sheilaray "@cottrell Thank you for this. We have had many ipen conversations as well and I’m working..." + (show)

@sheilaray
I’m so sorry that this is such a hard time but am thankful that you are communicating well and that you are trusting God. You are not alone and I’m praying that you will be surrounded by lots of encouraging support during this difficult time.

Lori, Volunteer Mentor | @loribmt | Mar 31 8:38am

In reply to @sheilaray "@loribmt Thank you for this and the links I will check out. I’m now trying to..." + (show)

Good morning, Sheila. I wanted to check in with you today after you shared the news about your husband wanting to stop his chemo treatments. Having been on his side of things, I can certainly respect this diffcult decision he’s made. Sometimes you just get to a point where enough is enough. While the decision can bring a level of peace to the patient, it can really take some time for family and friends to process everything.

Has your husband talked this over with his oncologist? They may mention speaking with a social worker to arrange palliative care and perhaps hospice at a later date. Both of those treatment caregivers do their upmost for both patient and family to make sure everyone feels supported and comfortable.

I’ve posted this article before for other members who have faced this difficult decision. It can be helpful to know what the next steps might be.
From Patient Power
https://www.patientpower.info/navigating-cancer/stopping-cancer-treatment-advice-for-making-a-difficult-decision
My heart goes out to you, your husband and family. Sending you a gentle hug… Have you shared the decision with family members?

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