May 01, 2013 - 9:59 pm
I wanted to thank all of you that have been on this forum for the past few months. I learned so much from all of you. Through this knowledge, I was able to ask the right questions when visiting the oncologist with my daddy - as a Southern girl we tend to call our dads "daddy" regardless of our age!
Our journey with this disease actually began last summer. Daddy started looking tired in late summer. We encouraged him to go to the doctor and his doctor ran all kinds of tests and all came back negative for anything. His doctor even ordered a colonoscopy - my Daddy's only sister died of colon cancer at age 49. At Thanksgiving he looked so ill that we requested the doctor perform a CT scan that Friday. Well, fast forward to that Monday when the results came back and showed a mass on his kidney - a very large one.
He was immediately referred to a surgeon who got him in right away for surgery - I might note without any further testing. A nephrectomy was performed on 12/7/12. Daddy was discharged from the hospital on 12/10/12 in lots of pain and never really recoverd from the surgery even several weeks later at Christmas. The surgeon called and said that the path report showed everything was encapsulated and all was OK. No rush to see the oncologist.
Well, I pushed my mother to get him in to see the oncologist and his appt. with the oncologist was 1/7/13. A PET scan was performed then as well. A very bad day for us - that is when we were informed that the cancer was Stage IV - mets to the bone -and that it was Sarcomatoid RCC. Not sure why the surgeon never told us this or moved us to the oncologist faster.
He was started on Torisel that next week and went through 4 weeks of weekly Torisel infusions. He did well during he first two weeks of treatment (was almost back to his old self prior to the summer of 2012) but then started to decline and was in severe pain in the back, hips, and thighs (all places where there was cancer). The oncologist performed a PET scan in week five and it showed that the cancer had spread to the abdominal wall but some of the spots on on the skeleton had shrunk (not disappeared) but there were new ones as well. The oncologist moved him to Sutent the last week of March. He was on that for 4 weeks and had all of the bad side effects you all have written about (mouth blisters, hand blisters, etc). He did really well during the first three weeks on the Sutent in regards to how well he felt overall, etc. and was even back at work. The fourth week of the Sutent he caught a cold which turned into double pneumonia which he has been battling since then. He still has it and a bronchoscopy was performed on Monday, 4/29/13 - the doctor who performed that test does not feel that there is any cancer in the lungs and we are still waiting on the test results to determine what med we move to in order to treat the pneumonia or if there is something else.
I asked the oncologist last week if we could do a PET scan to determine the efficacy of the Sutent and was informed that we need to do another round of that which Daddy is scheduled to start Friday of this week.
Thus why I am reaching out to the wonderful people on this forum -
Why do we have to do another round of Sutent if a PET scan would show this is not the chemo that is working best for his SRCC? Is it typical to do another round of Sutent before performing a PET scan?
Daddy is taking Tumeric and another spice he was told to take. Are these good for him?
Would Votrient be the next med he should be on?
Thank you for all of your support and help,