CancerCompass message board discussion started by Angie S. on 1/24/2003 http://www.cancercompass.com/message-board/message/all,501,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Anyone currently receiving treatments...Anyone survived same?? Angie S. Fri, 24 Jan 2003 00:00:00 GMT I was on Interferon A for 9 mos. Now on Thalomid. Terry M. Sat, 25 Jan 2003 00:00:00 GMT My mother was on Vinblastine (didn't work for her), then tried Interluken and Interferon combined series (could not cope with the side-effects), moved on to thalomid (also did not work for her, plus developed an legric reaction to it), went back to trying only Interluken 2 - so far tumor is stable. Elizabeth G. Mon, 27 Jan 2003 00:00:00 GMT Hi Just got the message. My husband has stage IV kidney cancer specifically renal cell carcinoma. He is being treated with a drug called proleukin. It seems to have slowed the progression but has not stopped it. We are trying so hard to find what else we can do. Any ideas? virginia l. Mon, 27 Jan 2003 00:00:00 GMT Go to this site and sign up for the Mail List and you will be able to talk to more than 800 individuals with kidney cancer and share their experiences. They also have a fantastic archive that you can search to get information on specific treatments. http://cancerguide.org/kofaq/ Linda G. Tue, 28 Jan 2003 00:00:00 GMT Hello: My husband has renal cancer and was operated on last April. He treated with interferon for 6 months and it slowed the leisons on the liver. In December '02, the doctor put him on thalidomide. Next month we will know if it has been effective. Also looking for suggestions for alternate treatments. Gloria P. Tue, 28 Jan 2003 00:00:00 GMT My brother is 41 and was diagnosed last year in March. At that time he had his right kidney removed, however, he was already Stage III and is now Stage IV. Currently he treats with a Renal Cancer specialist at the UPCI (University of Pittsburgh Cancer Institute) Hillman Cancer Center. They are very good and having worked in Health Care myself for over 25 years, I did my homework immediately. At any rate, he is now on Thalidomide every day (100 mg.) and Vinblastine. So far the metastases to his lung (via the lymphatic system of course, a lymph node!) is stable. He has received two full cycles and actually we are going back tomorrow for repeat CT scans, which are done every 2 months, to compare to baseline scans and check for status of disease. So far, so good. We all pray a lot and I believe very much in prayer as the Man up above has the final word regardless of anything. They are finding new treatments every day with this devastating disease. I know the side effects are not pleasant for the more aggressive treatment, but if he has to go that route, he is willing to try whatever he must. The Cancer Compass is great as are the people at the Cancer Treatment Centers of America. Had we been able to travel, I would have chosen them although we do have excellent facilities here in Pittsburgh. This facility is brand new and rated 11th in the country and climbing!! I would appreciate your input also and I will relay this info to my brother and if it's okay with him, I will give him your e-mail address. Thank you and may God Bless. I will keep you in my prayers. Sharyn (Yannone) S. Sharyn S. Tue, 28 Jan 2003 00:00:00 GMT I responded earlier to your question, but just realized that you may not have been notified as my response didn't go directly to you. I have Stage III Renal Cell Carcinoma and have found an incredible amount of info regarding treatments at the Kidney-Onc Mail List. Go to this site to sign up for the Mail List and you will be able to talk to more than 800 individuals with kidney cancer and share their experiences. They also have a fantastic archive that you can search to get information on specific treatments. http://cancerguide.org/kofaq/ Linda G. Wed, 29 Jan 2003 00:00:00 GMT My mother was diagnosed in May 2001. Had right kidney removed and all seemed good until August 2002. Started coughing up blood and CAT scan showed tumors in her lungs. Tried Interleukin in Sept & Oct 2002. Found out in December 2002 that it did not work, the cancer had increased in lungs and spread to liver. Now they, Loyola Med Ctr in Chicago, wants to put her in a stem cell transplant study. Her sister is a match. Currently going thru tests to see of she qualifies. She's not sure if she wants to do it or not. What does everyone else think? Michelle R. Wed, 29 Jan 2003 00:00:00 GMT I am hesitant to respond. But, I will pray for you and your continued health. My father was diagnosed with stage iv Renal Cell Carcinoma on June 27, 2002. He lost his battle on January 15, 2003. They tried interleukin and interferon and the side effects were really bad for him. They had to discontinue treatments after the third treatment. So, if you can tolerate those treatments, it is worth trying. Unfortunately, renal cell carcinoma is hard to fight. One thing is for sure, it is not bigger than God. God Bless you. Daddy's Girl Sun, 02 Feb 2003 00:00:00 GMT Radiofrequency Ablation Successfully Destroys Some Kidney Tumors Treatment appropriate for some patients who are not good surgical candidates BOSTON, MA -- January 28, 2003 -- A minimally invasive, experimental treatment is proving successful in removing small kidney tumors from appropriate patients, report researchers from Massachusetts General Hospital (MGH). In a study in the February 2003 issue of Radiology, the MGH team describes how a technique called radiofrequency ablation (RFA) destroyed all renal cell carcinoma (RCC) tumors less than 3 cm in size and some larger tumors, depending on their location. The most common form of kidney cancer, RCC will be diagnosed in almost 32,000 Americans this year and is most frequently treated with surgical removal through either an open or laparoscopic procedure. "We're very pleased with the success we've had, particularly treating small tumors and those on the outside of the kidney," says Debra Gervais, MD, of the Abdominal Imaging and Interventional Radiology Service in the MGH Department of Radiology, the paper's first author. "We now have an another year of experience beyond what is reported in this paper - more than 30 additional patients - with similar results." RFA delivers heat generated by electrical energy to tumor sites through a thin needle, similar to probes used in biopsy procedures. Placement of the probe is guided by CT scan, ultrasound or other imaging techniques. Widely used to treat cardiac arrhythmias, RFA is also being investigated for destruction of small liver tumors and has been used for more than ten years to treat a benign bone tumor called osteoid osteoma. Researchers at several centers have used it for patients with kidney tumors for whom surgical removal was not an option -- including patients with only one kidney -- and the current study reports what may be the largest number of patients treated and the longest follow-up time. The MGH researchers describe the outcomes for the first 34 consecutive patients treated with RFA over a three-and-a-half-year period. Because surgical removal cures kidney tumors, the only patients treated with RFA were those with medical conditions making surgery risky or with either a single kidney or poor kidney function. A total of 42 individual tumors were treated, ranging in size from 1 to almost 9 centimeters. All tumors located on the surface of the kidney were completely destroyed, regardless of size. Although larger tumors within the central kidney were more difficult to treat, more than half of such tumors were destroyed with additional treatments. Patients were evaluated one, three and six months after treatment, then at six-month or one-year intervals. During the follow-up period, which ranged from three months to three and a half years, four patients died of unrelated causes, two of whom had no tumor recurrence. The other 30 patients have had no local recurrence of the treated tumor. None of the patients with limited kidney function needed to go on dialysis. Peter R. Mueller, MD, MGH director of Abdominal Imaging and the paper's senior author, says, "The team approach that we've taken with our colleagues in urology is a major aspect of the success we've had with this treatment. We're very excited about the results we're seeing and the very low rate of complications. Even patients with multiple tumors can be treated as outpatients and maintain good kidney function." "In our more than four years of experience with this technique, we've had encouraging results in this particular group of patients," adds W. Scott McDougal, MD, chief of Urology at MGH and a co-author of the study. "I am optimistic that, with further study, RFA will someday become the standard of care for selected kidney tumors." Other co-authors of the report are Francis McGovern, MD, urologist, and Ronald Arellano, MD, radiologist, both of MGH. Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $300 million and major research centers in AIDS, cardiovascular research, cancer, cutaneous biology, transplantation biology and photomedicine. In 1994, the MGH joined with Brigham and Women's Hospital to form Partners HealthCare System, an integrated health care delivery system comprising the two academic medical centers, specialty and community hospitals, a network of physician groups and nonacute and home health services. SOURCE : Massachusetts General Hospital Mihyun E. Fri, 07 Feb 2003 00:00:00 GMT My husband, Danny Girard was diagnosed with Renal Cell C., in April 2001. It had spread to his lungs. He had his kidney removed that June, and then began in the fall with Interleukin/Interferon combination. It shrunk the tumors in his lungs 1/3 in the first month, and some the second month, but none in the next two months. The next spring, they tried him on Thalomid with no success, because he had to have such a low dose to avoid the tingling side effects. Last summer (2002) the doctors mentioned possibly trying stem cell replacement, so they tested his siblings for a match. One sister, Kathy, was a perfect match, and very willing. However, the drs. felt Danny was too thin and weak (down to 140 lbs. from 210 lbs.) to try it then. They decided to put him on Chemo!?!! to try to buy him some time to get stronger while holding back the tumors. All that did was make him nauseous and lose more weight every week. Then! He had a seizure at a very stressful occasion, which could have been precipitated by the Chemo (Gemcitabine), which was combined with Floruoracil. Now he is on Dilantin to prevent more seizures. There is a fine line between living with Dilantin without getting dizzy, and taking enough to hold back further seizures. The original dose (100mg X 3/day) was too low and he had a seizure the Saturday before Christmas. He was hospitalized for three days, rehydrated and received five pints of blood. Thank God he was home for Christmas. We had a very quiet holiday week. Our 4 children, ages 24 to 14, the oldest being a boy, were able visit relatives on their own. More to come (with God's help). Pat Daniel G. Wed, 12 Feb 2003 00:00:00 GMT Hello, How did the stem cell transplant go or did you do it for your mom? Thanks, Nancy Nancy S. Mon, 09 Jun 2003 00:00:00 GMT My Mom started coughing up blood in January, found that the tumors in her lungs were bleeding. So, they did 4 weeks of radiation treatment to help seal those up. Then, she had the stem cell transplant in April (her sister was a match). So far, she is doing as well as can be expected. She was released from the hospital sooner than we had expected. She is renting an apartment near the hospital because she has to go twice a week for blood work and an IV of whatever is necessary. She is pretty much in isolation and has strict limitations on what she can eat (nothing can be touched by other people). So, it has been emotionally difficult for her. She just recently developed a blood clot where her arterial port was, so they had to remove that and put her on Coumadin. Now, she has to get poked every time they take blood and give her an IV. She hates that because she has horrible veins and it usually takes a couple times before they get it. The doctors say they won't know for 3-4 more months whether the donated stem cells will do their job and start killing the cancer cells. In the meantime, the cancer is spreading. They think it's in her bones now. So, hopefully the cancer won't spread too much while we're waiting for this to work. There is a big possibility that she may need more stem cells transplanted but, she says she won't go through this again. Quality of life is not there. But, she gave it a shot so we'll never have to wonder, "what if". How are things with you? Michelle R. Tue, 10 Jun 2003 00:00:00 GMT  On 1/28/2003 Sharyn S. wrote:My brother is 41 and was diagnosed last year in March. At that time he had his right kidney removed, however, he was already Stage III and is now Stage IV. Currently he treats with a Renal Cancer specialist at the UPCI (University of Pittsburgh Cancer Institute) Hillman Cancer Center. They are very good and having worked in Health Care myself for over 25 years, I did my homework immediately. At any rate, he is now on Thalidomide every day (100 mg.) and Vinblastine. So far the metastases to his lung (via the lymphatic system of course, a lymph node!) is stable. He has received two full cycles and actually we are going back tomorrow for repeat CT scans, which are done every 2 months, to compare to baseline scans and check for status of disease. So far, so good. We all pray a lot and I believe very much in prayer as the Man up above has the final word regardless of anything. They are finding new treatments every day with this devastating disease. I know the side effects are not pleasant for the more aggressive treatment, but if he has to go that route, he is willing to try whatever he must. The Cancer Compass is great as are the people at the Cancer Treatment Centers of America. Had we been able to travel, I would have chosen them although we do have excellent facilities here in Pittsburgh. This facility is brand new and rated 11th in the country and climbing!! I would appreciate your input also and I will relay this info to my brother and if it's okay with him, I will give him your e-mail address. Thank you and may God Bless. I will keep you in my prayers. Sharyn (Yannone) S.Hi Sharyn.  My dad has his kidney removed in June 2006.  He now has found out that the cancer has spread and infected his other kidney.  He is in Stage IV.  I was wondering if this is similar to what happened with your brother.  The doctor today gave him 9 months to a year to live and told him that quitting smoking now is pointless so he should just continue for the comfort.  He has also prescribed 5 different pain medications including oxycontin and somas.  I feel like this might just be a recipe for suicide.  I was wondering if your brother was still alive today.  I hope to hear from you soon.Meghan Finkbeiner, Arlington, VA megfink Tue, 02 Oct 2007 00:00:00 GMT