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Xeloda, Gemzar, and Avastin

Posts: 21
Joined: Sep 2012

Good morning!

I found this site a couple of days ago when I was looking for other people that were experiencing the same side effects as my husband. It was then I realized that maybe he is one of the few people taking Xeloda, Gemzar, and Avastin for RCC!
A little background:
Last fall my husband became sick with his usual sinus infection for this time of the year. Anyway, it never seemed to get better and after 3 rounds on the same antibiotic for infections and sleeping for 2 or 3 days at a time, he pushed his primary doctor to do a cat scan. They found an 11 cm mass on his left kidney. Within a week we were at the hospital having his kidney removed. While the surgeon was in there, he also removed part of his intestines and saw an enlarged lymph node on his lung but thought it to be too risky to crack his chest to remove that as well. My husband healed well after the surgery, but after a few weeks and prior to meeting with the oncologist again, he started to have an enlarged lymph node on his neck. When they reran all of his scans, they found that yes it was a tumor and he still had enlarged lymph nodes on his lungs. The doc put him on the clinical trial for Xeloda, Gemzar, and Avastin.
The tumor in his neck had gotten so large and the pain radiated so much that he was on pain killers and was using a wheelchair to get to his appointments. Within 2 cycles (3 weeks on/1 week off) he was functioning much better and within 3 cycles, we could barely see the tumor. The good part about having a tumor on your neck is you can see progress!! Anyway, after a particularly stressful summer, the tumor seemed to be growing again. Scans showed it had grown 2 cms in each direction. They decided to keep him on the trial and see if the meds start working again. If not, the doc talked about the drugs usually used for kidney cancer or radiation. The side effects from the meds have been manageable- some hand-foot syndrome, but this cycle he has been having serious back and side pain. My husband is very active, so we thought the back pain was a result of doing too much after being sedentary for so many months. He started doing acupuncture every other week, which helps some, but it seems to be getting worse. Its a moving pain so its always in a different spot. Anyway, Google brought me to other people who were taking these drugs for breast cancer and had similar symptoms as a side effect of Xeloda.
So besides an intro, I was wondering- is he the only one on this board taking Xeloda, Gemzar, and Avastin for sarcomatoid RCC?

Its nice to meet everyone and happy Friday!

angec's picture
Posts: 924
Joined: Mar 2012

How are you? I am sure you will get some great feedback here. Thanks for the info on those drugs. This is the first i am hearing of them but i am a fairly new person on the boards. I want to say i wish you and your husband well! Please keep in touch. So nice to meet you as well! I hope the accupuncture works well for him. I didn't know what the connection was with the sinus and kidney cancer. Did the doctor scan the whole body then?

Posts: 21
Joined: Sep 2012

Thanks for your response. No, they did not do a whole body scan then. I think it was just a coincidence in timing of the sinus infection and kidney cancer. The doctor kept thinking that it was a persistent infection and did not investigate further until my husband pushed him for a cat scan. I remember my husband telling me that the doc said he was a 38 year old in good health so he didn't suspect anything else.
Thanks for your well wishes! Nice to meet you!

Texas_wedge's picture
Posts: 2798
Joined: Nov 2011

So far as I'm aware, the answer to your question is 'Yes'. The combo he's on has enjoyed success for quite a few years, I believe, in the treatment of breast cancer mets and I imagine you've been exploring the breast cancer threads already.

There seems to be accumulating evidence that well-chosen combinations, some involving mixes of older chemotherapy drugs with the newer targeted therapies, may be a good way ahead in the treatment of RCC.

Could you give a little more detail about your Husband (e.g. his age and general state of health, lifestyle - diet, smoking, exercise etc)and his pathology report - stage, grade, histological sub-type, necrosis, etc? Where is he being treated and what is the level of specialisation of his medical team?

There are quite a few members here (like myself) who have sarcomatoid RCC and would be interested in continuing dialogue about the effectiveness of the combo your Husband is on.

Posts: 21
Joined: Sep 2012

I will do my best with giving you the best info possible. I have found researching everything very overwhelming, especially given the fact that he is on chemo that is not typical for RCC.
My husband is 38 and in good health (considering!). He loves to hunt, work out in his shop, play golf, build anything he can get his hands on. He does not smoke and when our son was born last April (2011), our diet/beer drinking changed (for the better, of course!) Since being diagnosed, our diet has completely changed to mostly fruits/veggies, whole grains, and no red meat. He is being treated at MD Anderson. Let me do my best to answer your questions about his pathology report- Here is the info I found:
Pathology showed a 11.5 cm renal cell carcinoma with extensive sarcomatoid differentiation, greater than 95% of the tumor, Fuhrman nuclear grade 4 with invasion into the renal vein, perinephric adipose tissue, renal sinus vessels and renal sinus adipose tissue. Three hilar lymph nodes were positive for disease and 3 periaortic lymph nodes were negative for disease. Resection from the small bowel showed a 3.6 cm tumor involvement. Thus, the patient was initially a T4 N1 staging. Shortly after surgery in 01/2012, the patient noticed a right-sided neck mass. On 01/24/2012, a CT of the neck revealed right cervical lymphadenopathy measuring about 4.6 cm in size. Further imaging revealed retrocrural adenopathy and new mesenteric metastasis.
I hope this helps. I am looking forward to chatting with you in the future about this. Like I said before, I feel pretty overwhelmed with trying to learn everything about this but am looking forward to learning from others here.

Limelife50's picture
Posts: 476
Joined: Nov 2011

You make a good point,i think all of us should post our path reports and also be upfront about the treatments we have recieved and also our lifestyle choices before and after being dxed.I do not mean this in a negative way but we are all in this together,most of us will die from another cause while some of us will lose the battle to RCC and i think by being open we might make a differance in helping some of our members win the battle due to all of us making the decision to be unselfish.Early next week i will post my path reports and also share my not so good lifestyle choises and the procedures that have been done to me.Thank you and have a nice day.

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