Chemotherapy and Dialysis: Looking for others who have had both

@oregonami58 Welcome to Mayo Clinic Connect. I have read your posts and can relate!

I was on Revlimid and dexamethasone from Aug 2021 until last month. We are trying an experiment now, and only doing Ninlaro [since Nov 2024] and dex. I have been on peritoneal dialysis since Sept 2022, the kidney issues are not from myeloma.

Unfortunately I cannot get a stem cell transplant, not kidney transplant, and live my life now with these two conditions. My medical care is centered n Eugene [Oregon].

Thank you for sharing your story. Keep in touch, and be well!
Ginger

Hi
I was diagnosed with multiple myeloma in 2016 after finding sky high creatinine (17). I had experienced acute kidney pain just prior. Immediately given end stage renal failure status and sent to dialysis along with revlimid drug. After a few months they were going to prep me for home dialysis when my numbers radically improved and quit trips to dialysis lab. Shortly after I was approved for stem cell transplant at Seattle Cancer Care. Currently I'm on rev/dex/Kyprolis in remission. Car-t probably on deck at some point hopefully far in future. Stay strong and be well.

I have had this Kd for 51 years. When I went into chemo my creat was 2.5 today 5 years later it's 5.92. If I hadn't gotten the Cancer I think I could have lived a long life even with the Kidney disease

@kbirk Thank you! Reading about putting my feet in ice water really gave me the shivers! They figure the neuropathy is from a combination of the chemo [Revlimid] and the myeloma itself attaching to some nerves. Are your kidney issues a result of the chemo?
Ginger

Hi, I went thru chemo and radiation with severe kidney disease. I faired pretty well although the nephropathy is horrible. Putting your feet in ice water may prevent Nephropathy. I wish someone had told me this before I had chemo. My chemo was almost 5 years ago. My Kidneys are failing now. Karen

The average person has little to no inkling of what going on to dialysis entails. I am lucky my husband was on peritoneal dialysis for 5.5 years before his transplant, and I think of that as him getting a master's degree in PD dialysis! I will have vein mapping done this coming week in preparation for placement of a fistula, and am curious what they might say. I had melanoma surgery on right forearm in 2008 [32 stitch scar!] and am left-handed. Normally they defer to the non-dominant arm for fistula. My tip is to write down questions, be active in your own treatment, listen closely, lean on your support system.
Ginger

The Jacksonville Mayo Nephrology Team is amazing. My husband was seen regularly for 4-5 years before beginning dialysis. The team includes doctors, nurse practitioners, transplant team, social workers, dietitians, home dialysis team, and center dialysis technicians. We were seen and educated by all of the above several times throughout the 4-5 year period. By the time dialysis began we felt confident and understood what dialysis entailed. My husband is on the transplant list and we are doing home hemodialysis treatments 4 times per week in the comfort of our home while be closely monitored by the Mayo. My husband is still followed by the entire team. The Mayo makes it as easy as possible as all aspects are coordinated and all members of the team are kept abreast of my husband’s current condition.

What tips might you share for someone who is soon to start dialysis? What do you or your husband wish you had known?

Fortunately no my husband did not go through chemotherapy. He came out of surgery with a port installed to start dialysis immediately. Again, because of the interdisciplinary team he was seen by several different departments during his 9 day stay in the hospital. He was able to wait until 2 months after surgery before starting dialysis. This blessing gave his body time to heal from surgery first.

@knitgirl I just read your message in another discussion about your husband's bladder cancer and being on dialysis. I'm wondering if he had chemotherapy while on dialysis. @gingerw may be facing that situation in the near future and is looking to hear from others who were on dialysis during cancer treatment. Would you mind sharing?