Going downhill quickly and looking for Help!!!

 This is Ga_dawg’s wife. He first joined this group in March of this year after he had his kidney removed. He is not doing well so I am taking trying to find out any information I can that might be able to help us.

Ga_dawg was diagnosed with stage IV RCC in 8/2012. Cancer was in his kidney, both lungs, spine and left scapula. He began radiation on the bone mets in September and began receiving treatment at  M.D. Anderson in Houston, Tx in 10/2012. He began Votrient in 11/2012. Test in January 2013 and March showed the extensive therapy effects. In March his right kidney was removed and in April he began Votrient again. In June when we went for test there was some tumor growth in the lungs and, but the doctor wasn’t convinced the Votrient had stopped working and he continued on the Votrient  for another 10 weeks. During this 10 week period,  his BP meds were changed and he began taking the beta blocker, Bystolic. Almost immediately he began having more trouble breathing, diarrhea, etc… and refused to let me move his appointment up. He was so sick on 8/12/13 he finally agreed to see his local oncologist. CT scans were completed, but because they didn’t have his most recent scans the local radiologist couldn’t really give us any information on the tumors. He did say there was some fluid on the left lung, but not enough to be really concerned with. He was dehydrated so they gave him fluids and told him to stop the Votrient until he could get to Houston.

On 8/16/13 we saw his oncologist at M.D. Anderson and he was immediately hospitalized. Between 8/12/13 and 8/16/13 the fluid in his left lung had increased drastically and on 8/17/13 it was drained. The GU oncologist decided the Votrient had stopped working and although the tumors in the lungs had not grown much, the ones that had grown, were in the pleural lining of the lung and this was causing the fluid buildup. The decision was made to start him on Avastin, Gemzar and Xeloda because they felt the RCC had changed molecular structure and they believed this treatment would work. We spent a week in the hospital in which he was given a treatment of Avastin and Gemzar as well as two units of blood. When we left 8/23/13, he left on oxygen.

Since returning home he has had another round of Gemzar and Avastin as well as two more units of blood. He also began taking 3000 mg of Xeloda a day on 9/7/13. Although he was on oxygen and still somewhat short of breath when we got home, he really wasn’t too bad. Since his last chemo treatment on 9/5/13 he seems to have really gone downhill. He is very weak, has lost his appetite, just wants to sit in his recliner all day, sleeps constantly, and is very forgetful and somewhat confused. He refused to do little exercises his pulmonologist has recommended. He is to have scans and x-rays again on 10/4/13 when we find out if this treatment is working. At this point, I am unsure if his condition is due to the cancer or the treatment. Also, on 9/12/13 a visit to his pulmonologist found has pneumonia beginning in his right lung so he was put on antibiotics. The only good news we have gotten is that the fluid on the left lung has not built up enough to require a catheter be inserted, so I’m hoping this is a sign the chemo’s are working. He also begins physical therapy tomorrow and I’m hoping this will help some. His doctor in Houston is also going to prescribe the drug megace to help stimulate his appetite.

I am sick with worry and I’m really afraid I could lose my husband any day.  I have asked if he has given up and he says he hasn't, but I'm not so convinced of that. I have tried to do everything I can for him and I have been by his side at every step. Is there anyone out there who has had experience with this treatment and RCC? Are any of you familiar with megace? Any ideas on what I can do to help build up his strength? Any guidance or information you can offer me will be really appreciated. He was doing so well until about mid-July and like I said, I am scared to death right now.

Thanks!