CancerCompass message board discussion started by Nebraska on 8/8/2006 http://www.cancercompass.com/message-board/message/all,6361,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband has renal cell carcinoma, had his kidney removedand now part of his lung removed. The doctors want to start an aggessive treatment (il-2) but we're not sure where to go for this treatment yet, nebraska or oklahoma or texas ??????? Or if he now actually needs it. The dr's say he has several small spots on his lungs but they say its nothing to worry about, i'm not to comfortable with that. So if any body can help us on any of this, please please thank lou Nebraska Tue, 08 Aug 2006 00:00:00 GMT My husband, too, was diagnosed with renal cell carcinoma in December 2004. After a full nephrectomy and a recurrence in the liver followed by more surgery, we found an oncologist at the University of Minnesota Hospitals in Minneapolis. Further testing showed more cancerous activity in the liver, so an experimental treatment with a drug called sutent was recommended. This drug has since been approved by the FDA for use in the treatment of renal cell carcinoma. My husband went through six cycles of treatment with this drug and experienced what they call a "complete response", meaning he shows no more signs of cancerous activity. He has been off the medication since late April 2006. His first follow-up in June showed continued inactivity of any cancer cells. We are preparing to return for his second follow up this coming Friday and are optimistic that he will still be clear of the cancer. I know IL-2 is a treatment option, but there are newer drugs now available for treatment of renal cell carcinoma that have registered very favorable results. One is the sutent my husband was on (manufactured by Pfizer). The other is Nexavar, a Bayer-Onyx drug. I would ask my doctor about those. Both are taken orally as opposed to injections. Neither is without side effects. But we found the positive results were well worth the ill-effects the drug produced. My3sons Tue, 08 Aug 2006 00:00:00 GMT could you tell me what kind of test are takin to see if you still have cancerous activity ? and also what are they called. the oncologist here also told us about the drug sutent, we just can't decide what treament is best. i know new york is rated #1, houston is #2, mayo is #3, for best oncologist, but i'm just concerned about the care he will get. thanks lou p.s. was your husband in a trial clinic? Nebraska Wed, 09 Aug 2006 00:00:00 GMT Lou, The best advice I can offer you is to find an oncologist you are comfortable with and who is knowledgeable about renal cell carcinoma. We didn't have to travel far, as we live in a suburb of Minneapolis. We have been very happy with our oncologist at the University of Minnesota Hospitals. He was actually the second oncologist we met with. The first didn't seem to have much experience at all with kidney cancers. At the U of M, we were offered more hope than just surgery as an alternative. Interferon, IL-2, and experimental treatments were all explained. The U of M was, at the time, involved in a clinical trial for sutent. Because my husband qualified for the study, our decision was an easy one. With Interferon, he would have to undergo a series of injections on a weekly basis. While they could be administered at home, my husband is not a proponent of shots. The IL-2 treatment would have involved a hospital stay, again a series of injections over a period of 5 days, and the side effects described sounded like they could be pretty intense. The sutent is taken orally. My husband was able to remain at home. And, as the side effects hit, we were able to get medications that offset most of the bad ones and made them tolerable. As for tests that indicate cancerous activity/inactivity, my husband had a PET Scan/CT Scan combo at the culmination of each treatment cycle. The PET Scan is the one that actually gave our doctor the most information on whether cancer cells were active or not. In fact, we meet with our oncologist tomorrow to follow-up on the PET/CT my husband had on Monday of this week. We are optimistic that the drug has done it's job and killed off all the cancer cells in my husband's system. Routine follow-ups will most likely continue for the rest of his life. We expect that to be a very long time and attribute that opportunity to the sutent, and of course, the diligence of our oncologist. Please let me know what you decide. If you need anything else, just shoot me an email. Good Luck! My3sons Thu, 10 Aug 2006 00:00:00 GMT usan, we've met with 3 oncologist and have liked everyone of them. We asked the oncologist we have now about taking a pet, he said in my husbands case it would not benifit him and doesn't think our insurance co. Would cover this test. He just had a ct scan done on tuesday, i called the doctor today to find out the results, he said it came back looking good he didn't see any new growth anywhere.the dr. Is going to set up another appt. With a dr. In omaha at the lied transplant center to see what kind of treatment he wants to start. How long did the dr. Tell your husband he would have to take this drug (sutent)?? Thanks,lou My3sons Thu, 10 Aug 2006 00:00:00 GMT Hi Lou My husband has RCC and it has mestastised to his lung as well. His are also small. One lesion at 1.5cm and one at .4mm. However our Oncologist said a spot is a spot is a spot and it doesn't matter how slowly it is moving/gowing it is growing. They are now looking at putting him on Nexavar. He did 4 years of Intron A (interferon)and has had two reactions to that so it is time to try something else. I feel like the other. Try to find someone you are comfortable with. Patients have rights too and they are the ones taking these drugs. Our Oncologist at times gets annoyed with me and my asking questions for my husband but the way I look at it "They don't know everything" so keep on searching till you find someone who will make you feel comfortable. Take care and good luck Mary Mazzy Fri, 11 Aug 2006 00:00:00 GMT Try Robert Amato in Houston; he is a real kidney cancer specialist who will treat aggressively. A kidney cancer patient who has spots on his lungs should have them treated ASAP. Trishpm Fri, 11 Aug 2006 00:00:00 GMT Which treatment center is #1, #2, or #3 depends on the particular cancer being treated. In the New York City area, for metastatic kidney cancer, IMHO, the tops are Janice Dutcher at Our Lady of Mercy in the Bronx, Ronald Bukowski at the Cleveland Clinic, Amato in Houston, Figlin in LA, Atkins in Boston, to name just a few. Ask the doctor you choose if IL-2 is an option; some doctors don't use it even though it is the treatment showm to produce lasting responses. If you want to talk to people who have used these physicians and others, join the email support list specific to kidney cancer at http://cancerguide.org/kofaq/ and ask your question. Trishpm Fri, 11 Aug 2006 00:00:00 GMT When my sister, who had a kidney removed for cancer, developed a single lung tumor 7 years later, her local chest surgeon wanted to wait for a few months to see what happened, and thought a PET scan was not important. She was able to be treated at the National Cancer Institute, where the chest surgeon thought a PET scan was essential before surgery, which should have been done ASAP. Her lung tumor turned out to be lung cancer, not a spread from the kidney cancer, and if she had waited for surgery, she probably would have ended up with metastatic lung cancer. She is alive and well with no evidence of disease 3 years after lung surgery. Don't wait for treatment. If your lung spots are metastatic kidney disease, the soonber they are treated, the better shance you have. Trishpm Fri, 11 Aug 2006 00:00:00 GMT When my husband started his treatments on the sutent, he was involved in a clinical trial. The normal procedure for follow-up was a CT scan. However, his oncologist felt the PET scan was far more informative for him because he could monitor metabolic activity in addition to tumor size, etc. So, he got that approved for use. We've had one PET scan since going off the study and our insurance company paid their normal percentage. I would check with your insurance company personally to see what they will/will not cover. I'm sure each company is different. As for how long my husband had to be on the medication, we weren't given a length of time. Because the drug is new, no one knows for sure how long it will take for the drug to do it's work. All we know is that the last four scans have been clear of both tumors and any metabolic cancerous activity. We believe the drug has killed off not only the tumors, but the cancer cells that had to be present in his system in order for the cancer to have spread, too. We go in for a meeting with our oncologist this afternoon to get the results of his second scan since going off the medication and are optimistic all is well. Because everyone's situation is different-from tumor size at the beginning of treatment to response to a particular drug-I'm not sure doctor's will ever be able to tell a patient just how long they'll need to stay on this medication. It will depend all depend on how quickly the tumors disappear and the doctors are comfortable that all remaining cells have been eradicated. Hope this helps. My3sons Fri, 11 Aug 2006 00:00:00 GMT What kind of side affects are there with sutent?? And il-2 ?? Nebraska Sat, 12 Aug 2006 00:00:00 GMT I had Bladder Cancer Transitional Cell in the Kidney and Ureter. Three years ago. Last fall CT Scan showed nodules in Lung. 4 of them. My radiologist told me they were too small to 3mm to do more than follow them. One went from 3mm to 3.6mm in six months they think they are benign, or scar tissue, and too small to do anything more than to watch. In fact we have been doing every six months and she told me last week the next due in Sept if no change we go to once a year.... I am very nervous about that.... Any advice? I did ask for a PET and told Insurance wouldn't cover it. Is a PET a more accurate way of diagnosing lung cancer? I will pay for it myself if it is. Franniefoofoo Sat, 12 Aug 2006 00:00:00 GMT This dr., is it robert j. Amato out of the methodist hospital?? Or m.d. anderson ??? What kind of treatment might you be talking about ?? I'm also not sure what immunotherapy is, does this treat rcc, if you might know can you explained it to me please!!!Thanks lou Nebraska Sun, 13 Aug 2006 00:00:00 GMT Dr. Amato is at Methodist Hospital (he used to be at MD Anderson). He is willing to treat patients aggressively, with interleukin 2 (immunotherapy), some of the newer targeted therapies such as Sutent. or combinations of drugs depending on the location of metastases, previous treatments, and requirements of clinical trials. Trishpm Sun, 13 Aug 2006 00:00:00 GMT Did you contact your insurance company personally? Sometimes the hospitals assume a company won't cover a more expensive test. And sometimes a referral from a doctor makes all the difference. As for whether a PET is the better test method, I can only speak from our experience and I would say yes. Not only does it give a picture of the tumor, but also indicates metabolic activity which, we've been told, shows whether the cancer is active in that tumor. My3sons Fri, 18 Aug 2006 00:00:00 GMT I can't tell you specifically what the side effects are for IL-2 treatment. When it was presented as an option for my husband, they told us he would need to be admitted to the hospital so they could closely monitor the side effects because they were very similar to a strong course of chemotherapy. We were told the procedure called for 14 injections over a 5 day period, but that few patients were actually able to complete all 14 injections. Fatigue, nausea and heart complications were all mentioned as possible complaints. Again, that was from one source and some internet research. As for the sutent, my husband experienced fatigue. That was the biggest and most recurrent side effect. His hair turned white, but is slowly returning to it's natural color now that he is off the medicine. He experienced some gastrointestinal discomfort and vomiting, but was prescribed medications that took care of both symptoms. His joints ached, but with rest that didn't bother him too much. And he developed a slight rash on his face, arms and legs, but it didn't itch. It just kind of looked like acne. He also had occasional bouts of diarrhea, but again was prescribed medication that took care of it. There were very few days that my husband just felt he couldn't function, and worked full-time with the exception of his surgical recovery periods. We had his second follow-up last Friday since being taken off the drug. His scans were clear and he is feeling great. He doesn't go back for more tests until mid-November. With results like his, we are naturally excited about sutent for the treatment of renal cell carcinoma. But despite my husband's success, we are hearing of more and more success stories due to the drug. We hope you will talk it over with your oncologist and see what his thoughts are. My3sons Fri, 18 Aug 2006 00:00:00 GMT