Help with understanding treatment protocol

KT1972

Hello everyone-

Back story: My dear MIL (78 yo) was diagnosed with sarcomatoid clear cell renal carcinoma following an annual checkup after she had a reoccurrence of endometrial cancer with hysterectomy in 12/2020. The tumor at diagnosis was 6.1 x 5.9 cm right lower pole and had metastasized to a thoracic node and possible one in her neck . She has since had external radiation and brachytherapy for the endometrial cancer reoccurrence and it appears to be gone. She now is undergoing immunotherapy with Nivolumab and Cabozantinib and, from what I can tell reading her online records, this is a second line therapy because of her BMI (48) and pulse pressure (always near 100) and poor overall health and fitness level . She is about a month into the treatment and seems to be tolerating it well. However, something happened this last week that has me questioning whether she really understands the nature of her cancer and whether anyone is really explaining to her in a way she can understand. MIL has creatinine and rGFR testing every week one day before her infusion. She has had two infusions and has been taking the Cabozantinib for about two weeks and has been tolerating both fairly well. However, on Thursday before her infusion on Friday her creatinine levels had increased from 1.12 to 1.47 and the doctor moved the infusion out a week. They then gave her IV fluids and retested. Her levels dropped to 1.32 but still above normal listed at 1.11. Her eGFR is at 41 and has steadily dropped since 6/9/22 from greater than 60 to 50, 36, and 41 after the fluids. MIL reported this to SIL as, "IV worked. Creatinine better. Infusion set for next Friday. Blood work Thursday." SIL is very upset and getting on MIL about not drinking enough water. MIL also believes that she will at some point be having the kidney removed.

My question is this- my SIL thinks that my MIL just needs to drink more water and she will be fine for immunotherapy. I I'm concerned there is underlying kidney damage or adverse affect happening and, based on what my MIL is telling my SIL, MIL does not appear to understand what is happening or is putting SIL off. MIL seems to think that because they rescheduled the immunotherapy for next week because the IV worked so everything is "fine." MIL is not able to read the online medical records but I do (with her permission) because it is my way of coping with the illness of a woman who has been like a mother to me for 30 years. But I really have no input in her care other than to be supportive of her and my husband and am not included in conversations with her treatment team. The thing that worries me is that from what I'm seeing on the records, they moved the therapy out a week before they even retested and, even with IV fluids, her levels were still high. I'm concerned she may be having an adverse reaction to the immunotherapy, worsening kidney function not related to drinking more water, and does not at all sound like a candidate for having the kidney removed. My fear is that her doctors are not being frank with her about her cancer and because she does not really understand the severity of her condition she is very cavalier about her own care. Or maybe after a lifetime of not taking very good care of herself but having good fun she is unlikely to change and we should all just butt out. In either case, can anyone comment on the creatinine and eGFR levels and how "normal" they have to be (if there is such a thing) to continue with immunotherapy and if having a nephrectomy at age 78 with a BMI of 48 and BP of 148/50 is even likely?

Thank you.

Bay Area Guy

Hi KT1972. I’m not certain what the targeted immunotherapy drug does in terms of kidney function, but the drop in eGFR, coupled with the creatinine increase, seems troubling. If you have her permission to speak with the docs about her condition, it would be good to compare what they say they’re telling her versus what she thinks she’s hearing.

KT1972

Hi Bay Area Guy- Thank you for your response. It looks like from my research that the immunotherapy can cause kidney function problems although it is considered "rare." I'll talk to hubby and SIL about them being on the next call with her doctor so they can hear what the doctor is telling MIL about the creatinine/eGFR numbers. If the issue is not resolved with more water and there is an underlying problem with kidney function that precludes the treatment then I guess each week when she has her testing before the infusion it is going to come up and they will have to go to next steps whatever those are.

Best wishes.

po18guy

All of our blood work is like the ocean tides. Any given result is a still photo of a dynamic organism. Since allogeneic transplant in 2015, I have had elevated creatinine (1.7-1.8), now down to about 1.2. The therapy is indeed drinking copious amounts of water. The elevated levels are likely related to the effects of treatment and the substances her kidneys must process. They are working much harder than before treatment and unless she goes on temporary dialysis, the way to lower her number is to flush her kidneys out with water.

Treatment is a compromise, nearly always carrying life-shortening consequences, but is fully intended to extend what would otherwise be a very limited future. Given her age, history and current co-morbidities, the amount of treatment she can tolerate is limited. While this sounds pessimistic, it is better than the other option. We are well advised to enjoy each morning and the day which follows, loving and being loved. One semi-touchy final point is that MIL's life is her own and she may sense, better than anyone else, that it is drawing near to its end. That mindset can produce a sort of passivity which can be frustrating to those around her.

KT1972

Thank you for your reply- She was able to have her treatment last week even though her numbers were still a little high but lower after drinking a lot of water. She is, so far, tolerating this treatment far better than any of us thought she would so I am so grateful for that. I don't want her to be uncomfortable or otherwise ill from it. On the semi-touchy point- I appreciate your input very much. You have articulated what I've been feeling but haven't been able to articulate myself. I'm coming to see that she may well indeed understand what is happening but that she doesn't want to talk about it and is choosing to do things or not do things her way. I'll just plan to support her choices in any way I can.

Best wishes.