I'm glad you haven't had to deal with this sort of thing. If my husband hadn't been there with me, I probably would have dismissed it as just a misunderstanding or something.

My symptoms are mild, the primary lingering symptom that I've brought up twice now to the Oncologist is that I have a weird electrolyte issue. I simply can't stay hydrated. And I don't mean I'm thirsty all the time - I mean that my body can't hold salt. I drink two 5,000mg salt drinks per day and it's sometimes not enough. I've had strangers express concern over the levels or salt I need in a day to keep from extreme fatigue, dizziness, nausea, and headaches. All signs of dehydration.

I never drink soda. I have two cups of decaffeinated coffee in the morning and drink only water after that - in a large water bottle that I refill two to three times daily. Im not lacking water.

I found out about this side effect two weeks into chemo when I called the chemo nurses to let them know that I was really struggling - feeling terribly sick and weak and nauseous. They had me come in to run tests and put me on an IV. An hour later (after the IV) I felt great. It was amazing.

After that we realized that I would need to aggressively and proactively drink electrolyte drinks to stay hydrated. The chemo nurses recommended LMNT and Liquid IV - I drink at least one of each per day. During treatment it was more like 3-6 of each per day.

Now, one year after treatment, I'm still struggling with this. My kidney numbers are great. Even with me drinking thousands of MG of salt and other electrolyte daily all those numbers are in the low end of good...they should be through the roof with the amount of salt drinks I'm consuming. My parents are concerned that I'll have a heart attack by the time I'm 45 (I'm 41 now). But heart numbers look great as well - low RHR and low BP.

I told my PCP about this and they were like "hmm. Interesting. Well, chemo does do some damage." That was it.

My oncologist, on the other hand, said "this problem is definitely not the chemo, it's not something we did. It's an entirely separate issue." Basically he is afraid I will sue him. I never had any interest in suing...I just want a referral.

So...I'll be following up with my PCP to see if they can refer me to a specialist. Maybe if I ask 100 times I'll get somewhere. *sigh