Treatments after Immunotherapy

[Mafaldaaa]

Hello! After the operations my doctors gave me Sutent for 7 months. Then there was resistance and I had surgery on the psoas muscle, which is the most affected part. After the surgery my doctors gave me Nivolumab. After 7 months, I had resistance again. Now I am without treatment and my doctors propose Axitinib or participate in a trial of Votrient, which is not yet approved for the use of patients who have done immunotherapy.

Is anyone in one of these programs? Has anyone used Axitinib and Votrient and which of them has been more toxic?

Thank you

[4thround]

I am on Axitinib currently(12 weeks). I am not on Votrient with it. The side effects have been similar to others; sore mouth, diarrhea, occasional nausea and hand/foot syndrome and fatigue. Fatigue has been the worst.

[Mafaldaaa in reply to 4thround]

Thanks for your answer. When I was with Sutent, I never had diarrhea, what was worse was my feet and then my mouth. When the treatment was almost over, nausea and vomiting appeared.

Unfortunately now I have breast cancer, on time, and I expect surgery and the corresponding treatment.

I try to take everything as if it were a joke.

Blessings

[greg1976]

I initially did Interlukin 2 as my first treatment. That did not work so after two rounds I was removed. I then started with Sutent for 3 three years which did the job. I was on Votrient for a while but the side effects were not good but better than the high dose Sutent was. I am no not taking any meds and have been in remission for the past three years. Good luck on your journey.

[Mafaldaaa in reply to greg1976]

Thanks for your answer. How lucky you are that the disease has subsided!

First they gave me Sutent and the worst of all the side effects were my feet and then my mouth. It was only 7 months in the highest dose, then surgery and then Nivolumab, which I tolerated very well.

Unfortunately now I have a breast cancer, on time, which has priority, soon I have surgery, lightning and tamoxiflene.

Now I take everything as if it were a joke.

Thank you for your wishes and blessings.

[fromhere]

My radical nephrectomy was 10 years ago. 8 years ago it metastasized to adrenal gland and other (remaining) kidney. Had 2 years on Votrient- couldn’t take full dosage but it worked for 2 years. SE high BP, foot syndrome, diarrhea, hair turned white, fatigue. Afinitor- gave me pneumonitis, couldn’t take. Nivolumed- 8 months, cancer grew. Axitinib- 2years SE high BP, diarrhea/constipation, fatigue, joint pain. Stopped working. Mets to liver and pancreas. Now on Cabometyx. There’s no way to know how any individual is going to react to the medication, if it will work, for how long, what Side Effects you may have. If we knew that this would be so much easier. All I can say is you have to keep fighting. You are not alone.

[Mafaldaaa in reply to fromhere]

Thank you for your response and for your desire to continue fighting. Unfortunately now I have breast cancer at an early stage, it is completely independent of the kidney. Soon I will have surgery and lightning, and then tamoxiflene. When this stage finishes, I will begin with the kidney.

You gave me the courage to continue, the only thing that scared me would be not being able to continue living alone and make a normal life. Blessings

[4thround in reply to Mafaldaaa]

I think that is what scares all of us! So sorry about the added whammy of breast cancer. It is easy to feel pressed down when there is so much going on with your health. I have been at this for 12 years , six drugs, and 3 surgeries. There are so many ups and downs on this journey. I will be praying For some of those “ups” for you soon

[Mafaldaaa in reply to 4thround]

I have only 3 years since diagnosis, 3 surgeries and 2 treatments. Immunotherapy brought me small inconveniences, like tendinitis in my Achilles tendons.

Now we add the breast that must be resolved urgently to continue with the treatment for kidney cancer. It seems that this is the way life, with ups and downs. Thank you for your prayer, I will also pray for you. Excuse me for my English, it's not good.

Receive blessings

[4thround in reply to Mafaldaaa]

Your English is fine! All of this seems pressing.

[Mafaldaaa in reply to 4thround]

Thanks a lot!!

[MICHIGANDAVID]

My wife is on Votrient and is on cycle (month) #77... Everyone’s DNA is different so it effects people differently. She is the pride and joy of her oncology team.

[Mafaldaaa in reply to MICHIGANDAVID]

Thanks for your answer. Sometimes anxiety is what dominates us and wants to know more than we can.

Blessings for you and your wife.

[greg1976]

I had Votrient several years after having tried IL-2. I did Sutent for three years. Votrient was not fun but tolerable. I just saw this post. I am sure you have it figured out by now. Good luck.

[Mafaldaaa in reply to greg1976]

Thank you for telling me your experience. For now I cannot start any treatment because I am having an adverse effect of Nivolumab in my mouth.

The truth is that this disease is a constant rise and fall. Now that I'm in a stand by, I'm going on vacation. Thanks again for your words!