Well Paul was in the ifosfamide and etoposide and they took him off of it cause Paul refused to go back into the hospital for the chemo. It cause really bad anxiety for him and he just didnt want it anymore. They put him on Votrient until they see if he is accepted for a trial up in Maryland. He has been on it for 2 weeks now and no side effects? He doesnt scan until the end of the month to see if it's working. Has me so nervous. He is loving that he doesnt have to plan around a hospital stay and we are able to plan things. What matters is that he is happy but deep down I am stressing. We finally moved to Florida and he will be retiring soon from the army. We love his doctor at Moffitt and they had different idea's that when we were at Stanford. As always praying for that miracle.
Dora
Hi Dora and Paul,
I'm a patient at Stanford and I see Dr. Ganjoo. She will more than likely be your Dr. there as she is a sarcoma specialist for synovial cell. I have been with her about 3 years. I just completed 6 rounds of a 14-day continuous infusion of Ifosfamide. Although I did not have nausea, the other side effects were not fun. Yes, the anxiety was absolutely horrible and I have developed neuropathy in my feet and hands. In about two weeks, I will be starting the Votrient. I hope this will continue to keep my tumors stable, and I'm being hopeful that I will experience some strinkage. It's good to know that there are very little side effects, but I am a little concerned about the development of high blood pressure which seems to be one of the major side effects affecting patients. So, we'll see. I see you posted on July 6 which was more than a month ago and I would love for you to give an update on how the Votrient treatment is going. Hope all is well. Thanks Gina
Hello, Dr Ganjoo was Paul's doctor when we lived in Ca. Please Please tell her and David we said hello! We loved her and David! We saw here for the last 3 years also. Do you know Laura the NP on F Ground? We loved Lisa the Irish nurse and then Shirly who worked in one of the offices when you walked into F ground. Gosh I wonder if we every saw one another in the waiting area? Paul had major anxiety with the Ifosfamide and so they put him on the chemo pill. It did nothing for him though, his tumors grew a lot bigger. Right now he is getting ready to do a trial up in Maryland next month. We live in Florida now and he gets treatments at Moffitt. I wish you all the luck for the chemo pill!!! I pray it works for you! The only side effect he has really was his hair turned white! His arms, his head. Crazy huh!
Well, I hope everything works out well for Paul. SCS is just a crazy battle. I've been doing it for 21 years now and I have been with some of the best Drs. for sarcomas. I'm seeing more options being available for SCS. So, we have hope! I ready all of the side effects for Votrient. I'm praying it does well for me. I was on Gleevec some years ago, and it worked for about 2 years. I'm just looking forward to getting back to having a better quality of life. Ifex did not give me that. It's been two weeks since I have had my last treatment...it a tough recovery. Well, thanks for responding. Again, good luck!
WOW 21 years! I pray Paul is still around that long!!! This SS is something else! Good luck on your treatment and PLEASE tell them at Stanford we said HELLO!!!
Hi my neice Megan 22 years old, upstate NY, has been battling SS cancer for over 5 years. Since it came back in her lungs this third time she has tryed two trials that did not work and now has had two rounds of chemo that were so strong she was going to tell the doc this time no more.. she had a catscan that showed the tumors have not grown so they are doing a chemo outpatient sort of thing. I was wondering what sort of trial they are considering for Paul?