Renal Cell Carcinoma diagnosed 5 years ago

[Gladiator4life]

I'm new here. I don't really know where to start....I am stage 4 and have tried 4 different cancer drugs because the ones I had been on quit working. I struggle with symptoms that just seem to start out of know where.

[MICHIGANDAVID]

Welcome to the group.

Which TKI drugs have you tried?

What does your oncology team what to try next?

My Wife mRCC Stage 4 since 2012. Has been on Votrient since December 2012.

She has been on one and only one TKI. Started on 800 mg daily, had been on that does since April 2018, They changed it to 600 mg daily. Due to she is doing so well.

Newest CT Scan should new protocol is keeping cancer stable. So we will stay on 600 mg daily. She is on Cycle (month) #69. She is the pride and joy of her oncology team.

[KidneyCole]

I’m stage IV and also have horrible side effects from all the meds I’ve been on so far. The first were two targeted chemos (I’ll have to look up the names) that worked but I was in the ER every few days with migraines and puking. So I wasn’t allowed to continue.

Then I was on Cabozantanib. That did not work at all. Went to the ER less but added side effects of not being able to stomach most foods and my tongue was too sensitive to handle anything that was helping with nausea. And my hair turned white like Mrs.Clause.

Now I’m on 2 immunotherapy meds and having horrible flu like muscle aches, nausea and my thyroid is over active. I can handle everything but the muscle aches. This is worse than pain from bone metastasis.

I feel like I don’t see people commenting with horrible side effects often and it makes me feel like I’m the only one. Maybe it’s wirse depending on where the cancer has metastasized? Mine is in my skull, lungs, ribs, and liver.

[MICHIGANDAVID in reply to KidneyCole]

Side effects very TKI to TKI and person to person it’s different for everyone. Depends on immune system and other things.

[greg1976 in reply to KidneyCole]

You are not the only one. I had severe side-effects with Sutent and I lost 20 lbs, could not walk, felt fatigued and other side effects. I tried other medications since then and ALL had side effects. It is just different with each person. I suspect that most people don't talk about the side effects as much because they are more interested in the effectiveness of the medication and the end result. I hated the side effects and sought methods from other folks on how to deal with them. I also figured that if something worked, I would put up with the other baggage that came along with it. You are not alone.

[KidneyCole in reply to greg1976]

Thanks! It’s actually nice to hear I’m not the only one with bad side effects. I’m younger than most patients, 37 years old, and my body just does not seem to like most of these meds. Immunotherapy has been better than most and I have 3 young children so I’m doing as much as possible.