Our online kidney cancer forum offers support and feedback for those currently coping with cancer. Visit our resources at CancerCompass.com to research information and ask new questions. http://www.cancercompass.com/message-board/cancers/kidney-cancer/1,0,119,8.htm Tue, 21 May 2013 00:00:00 GMT Tue, 21 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Do you have to have a few rounds of Zometa before it helps with bone pain? My husband has pain now and then. Do most of you having success with Sutent find that although it shrinks lung tumors, it has little effect on bone progression? Curious. http://www.cancercompass.com/message-board/message/all,71840,0.htm mg1957 Mon, 20 May 2013 00:00:00 GMT A few years ago I was told that there was a cyst on my right kidney.  I was assured that it was only a fluid filled cyst so we watched it every 6 months.  It remained unchanged until 1 year ago when it suddenly increased in size.  We immediately had a partial nephrectomy and were told that it had all been gotten and that no further treatment was needed.  It was a rare form that grew very slowly and was even more rare to spread (chromophobe??). Six months later I had my first CT scan and everything was fine except for a very brief mention of a bone lesion on my left femur (no size mentioned).  Six months after that at my next CT scan, my kidney was in perfect shape but they mentioned the 4.5 cm bone lesion again but stated that it was unchanged from the last scan.  Due to the size I went to an Ortho.  I had a bone scan done and it came back showing no hot spots indicating cancer.  Two radiologists, two orthos and the bone scan said it wasn't cancer.  The Ortho did said that because the lesion was so large that I would need to have a rod placed to keep the bone from breaking.  He said that he would send the lesion off for pathology but that it had all appearances of it being benign.  No worries. Got the path report last Wed and much to my shock, it came back as cancer and stated that it was metastatic from the kidney.  They said it was clear cell.  They said it was grade 1 or 2. I have an appointment on May 28th at MD Anderson but in the mean time I am having some serious meltdowns. Has anyone experienced anything like this and I would love to her positive stories of survival.  :0) http://www.cancercompass.com/message-board/message/all,71832,0.htm lindawilkinson Mon, 20 May 2013 00:00:00 GMT Was dx with kidney cancer in 2011, that is when I first found this site.  In Nov 2011 had left kidney removed stage 2 RCC have had several scans and blood tests all negative.  A few months ago I started feeling really tired, increased swelling, in face, hands, stomach, lump in throat.  Originally thought right kidney wasn't functioning properly.  I finally went to the Dr. after deciding I wasn't over-reacting. Blood test ordered and found my thyroid wasn't functioning properly and he put me on meds, also did a scan which shows mass on my thyroid, he is trying to find a surgeon to remove and states most likely mets from RCC. http://www.cancercompass.com/message-board/message/all,71783,0.htm dryheat Fri, 17 May 2013 00:00:00 GMT Hi Everyone! First Post. My uncle, age 64, has been diagnosed with stage 4 RCC. From the right kidney it has spread to the right lung and also the veins. We are told by senior cancer specialists that chemotherapy oy radiology do not exist as optiions, and that sugery is extremely high risked and not advisable considering his age and health and the situation of the cancer. Now, as a targeted therapy, a dosage of Sutent has been suggested, and though we have read about the side effects and i have also read some of the responses of people undergoing the Sutent course on this site, and not that we really have any other options open infront of us right now, not really clear if we should go ahead with Sutent, specially considering his age. Please advise!  http://www.cancercompass.com/message-board/message/all,71622,0.htm Jayesh Sat, 04 May 2013 00:00:00 GMT My husband is still smoking a pipe after being diagnosed with rcc stageIV,left kidney removed and mets to humeris and ilium. He is getting thinner and losing muscle mass. Beginning sutent next week. I feel helpless.Please encourage me. http://www.cancercompass.com/message-board/message/all,71585,0.htm dia48 Wed, 01 May 2013 00:00:00 GMT I was diagnosed with stage 4 kidney cancer in October. I had that entire kidney removed and now have some places in my lungs. I was on Sutent but had bad,bad reactions and am now on Afinitor and so far so good.Haven 't had a scan since starting it but know it'll work. It's difficult also because I have a balance issue but all will be ok one day. What are some suggestions about nutrition and maybe vitamins? Most everything I know is from online. Oh I am 42 and am not afraid of a fight.... http://www.cancercompass.com/message-board/message/all,67890,0.htm jtomwag Tue, 28 Aug 2012 00:00:00 GMT I had my left kidney removed 1 year ago and all test results have been normal so far.  Last bloodwork from my primary care doc showed BUN of 24 and Creatinine of 1.41.  Also a bit anemic (HCG 11. and HCT 35.9).  I am worried since I only have one kidney left but primary care doc just said to have blood redrawn in 1 month.  Have any of you had BUN/Creatinine off after kidney removal?  Are our lab values different that folks with 2 kidneys?    http://www.cancercompass.com/message-board/message/all,71749,0.htm dmfarley Tue, 14 May 2013 00:00:00 GMT I am scheduled to see my doctor this Thursday to schedule the surgery. I was hospitalized on April 08, 2013 for a week due to what I thought was complications from gastric bypass I had on 03/13/2013. They found a tumor 2cm on my right kidney and told me it was renal cell carconoma. I had a severe UTI and a bacterial infection and was running fever all week up to 104 so they would not do the surgery until my gb surgeon released me. My urologist has made me wait a month to see him to schedule my surgery. I am seeing different sizes on the incision site. Mine will be an open partial nephrectomy. I was wondering about how big the scar will be and where it will  begin and end and if most are the same size, if anyone may know. I am SO thankful they caught it in time, but at the same time SO scared as well. Really glad I found this site, it has been nice to see others with some of the same questions I have had. Thanks for any information!! http://www.cancercompass.com/message-board/message/all,71754,0.htm LeeAnnC Tue, 14 May 2013 00:00:00 GMT 2cm kidney stone found in the same kidney after 12months RCC post surgery. What shall I do, who do I see instead of local urologist?  Any tips? Will I have to operate on the broken kidney to get the stone out? Depressed and worried.  http://www.cancercompass.com/message-board/message/all,71016,0.htm burke Thu, 21 Mar 2013 00:00:00 GMT  My husband was diagnosed with stage IV kidney cancer after almost five years in remission in November.He has been on Votrient for two weeks and has no side effects so far.Does anyone else have experience with this drug?We are wondering if he may eventually have some issues. http://www.cancercompass.com/message-board/message/all,64345,0.htm JOYCEPAY Sun, 05 Feb 2012 00:00:00 GMT Hi everyone, have been using this site to research collective duct carcinoma for the past two years and have found it very helpful so I wanted to post my experience of this disease with you all. I am being as brutally honest as I can be as want other people to know facts of this disease and its treatment side effects. My mum had a suspected kidney stone on 25th April 2011 so doctors sent her for a scan to make sure there was nt any more. While scanning her kidneys they saw something that they did nt like and proceeded with biopsies however they struggled to get any tissue as they were getting the biopsy through the urether so in the end did a needle biopsy through the back - this went on until 23rd September when she was finally diagnosed with collective duct carcinoma. ( 5 months to diagnose ) She had her left kidney removed and after body scans was cleared of any mestatis ( spread ) and proceeded to have scans every 3 months - she was cancer free for 9 months and then we were given the news it had spread to lungs and the fatty tissue which surrounds where the kidney once was. As this disease is so aggressive and rare they suggested sutent as they say no cure for this cancer they can only hope to control it. Traditional chemo and radiotherapy do not affect this cancer. Mum took the sutent with massive side effects: Sore feet ( skin falling off) Exhaustion Sickness Running to the loo often not making it in time Sore gullet making it almost impossible to eat even when starving Sutent attacks the thyroid gland so made it so under active it made her loose her hair ( the sutent makes your hair white but its the low thyroid which makes you loose hair at a rapid rate) Loss of taste buds Sore mouth and gums High blood pressure Sore Bottom - welts appeared on inside of buttocks which made sitting down very painful. As so many side effects her cycle of sutent was reduced so rather than taking everyday she had 2 weeks on it and one week off. She continued this cycle up to Febryary 2013 when she started having weird sensations in her eyes, extreme dizziness and vertigo type symptoms. We had to call ambulance and she was admitted to hospital for brain scans and monitoring. They could not find the cause of these symptoms - we were worried had spread to brain but it hadn't. However 3 weeks after admittance to hospital she suffered a massive stroke - we were told by the hospital that sutent carrys this risk as can attack the blood vessels in your brain. But her oncologist never advised of this risk. Due to the stroke she could not have the sutent so she was rehabilitating in the acute stroke unit quite well and was discharged on the 9th April 2013 we had a scan on the 15th of April and she was told it had spread to liver. She was having extreme back pain by this time however doctor did nt seem to think in bones however never did Ny bone tests to confirm or deny this. She was in so much pain that she was admitted to. Hospice on the 1- st of may for symptom control ( pain relief ) no one had ever given mum a definite prognosis of how long she had and sadly had a massive stroke in her sleep and was unconscious she passed 5 hours later on the 3rd may 2013. Hospice doctors are convinced it had spread to brain and spine but we will never know for sure as no autopsy done. Do not waste a minute when you or a loved one are diagnosed with this disease tell people what you want them to know we did nt even talk about her funeral wishes as we though we had longer with her. Be aware of the horrible effects of sutent and ask oncologist lots of questions as we trusted out doctor but maybe sutent was nt the best option after all for mum but for others it may be he right medicine. I hope this helps someone looking for answers and if anyone wants to message me please feel free to do so. http://www.cancercompass.com/message-board/message/all,71695,0.htm Dolly1978 Fri, 10 May 2013 00:00:00 GMT My husband has been on Suntent for 6 rounds, in between he had surgery to remove one effected Kidney, and part of his colon also effected with cancel.  Recovered great out of the hospital in 5 days, regular activity in a month. He has not had any side effects from the drug. Could this mean it is not working? http://www.cancercompass.com/message-board/message/all,71664,0.htm izs534 Wed, 08 May 2013 00:00:00 GMT I was wondering if any of you have had any luck with Avastin and Irinotecan to help stop or at least slow Stage 4 colon cancer? http://www.cancercompass.com/message-board/message/all,71678,0.htm tracikayette Thu, 09 May 2013 00:00:00 GMT Hi, my husband has been fightening this horriable disease since 2005. Had radiation, chemo nuromous times. Its inoperable. He now has IV chemo every 2 weeks and BCNU every 8 weeks threw an IV also. His platelets was 145,000 then dropped to 88,000 last week and now this past Monday it 69,000. I asked his no if there is something we can do to make it go up. Not now was the answer I got. He can't do his chemo today because of the platelets being so low. My husband is now waiting for next Monday to redo the bloodwork once again to see if it continues to drop. Has anyone else experience this? Is this normal? What can I expect? He is so tired. I was told to watch for bleeding. No shaving or anything that can cut him. Also they said watch for internal bleeding. Don't really know how to watch for that. But if he gets any weaker I will take him to the ER. Does anyone have any insight on this. I'm so worried for him. Vicki http://www.cancercompass.com/message-board/message/all,71675,0.htm vicki2261 Thu, 09 May 2013 00:00:00 GMT Hi Everyone, I need your help. My hubby (RCC, stage I'V, 2011, many mets to bones), has been on Sutent (a year) and now Afinitor for 3 months. His last scan showed stable disease, but our Oncologist wants to stop the Afinitor as he is getting more frail & weak, and feels that he has only weeks to go. He has had on going problems with hypercalcemia. What do we do? Have any of you stopped treatment and done nothing?? We are so worried ..... Nettty http://www.cancercompass.com/message-board/message/all,71633,0.htm Nettty Sun, 05 May 2013 00:00:00 GMT I started taking 50 mg sutent for kidney cancer and my white blood cell count did not recover during the 2 weeks off, so my oncologist is putting me on 37.5 for the next cycle. He told me they do not make a 37.5 strength sutent and I would have to take a 12.5 and a 25 to get the right dosage.I am wondering if anyone who is taking 37.5 has to do the same as I am? Also what side effects can I expect from 37.5? Thanks Michael   http://www.cancercompass.com/message-board/message/all,69958,0.htm smazzie Sun, 13 Jan 2013 00:00:00 GMT Hi All, My mom currently takes 800mg of Votrient and experiences managable side effects from this drug; however, she recently had radiation to her brain and neck and to reduce the ill effects of swelling, she is taking 3mg/day of dexamethasone as perscribed by her oncologist. It is my understanding that there is a mild drug interaction between Votrient and Dexamethasone. Is anyone else in a similar situation where they have to take a low dose of sterioids while taking Votrient? Can anyone tell me more about this drug interaction? My mom has to take the steroid or else she has terrible headaches that cause nausea and vomitting. She is currently tappering off the steroid and is down to 3mg/day. She will go down to 2mg/day next week. Any advice is greatly appreciated. All my best, Lindasdaughter http://www.cancercompass.com/message-board/message/all,71463,0.htm Lindasdaughter Tue, 23 Apr 2013 00:00:00 GMT  My husband had a radical nephrectomy in September.  He is scheduled to start IL2 on Monday.  What can we expect?  If you've had Stage IV with lung mets I would love to hear from you. thanks, matlar25 http://www.cancercompass.com/message-board/message/all,69273,0.htm matlar25 Sat, 24 Nov 2012 00:00:00 GMT Ok, team...we just found out that the hdil2 was ineffective. Jack had a ct 1 month after the second week of treatment completed. So, now we have to decode on which treatment to take. I believe student and one other (votrient) were mentioned. If you have been on any of the first or second line drugs, please comment. Jan http://www.cancercompass.com/message-board/message/all,70051,0.htm matlar25 Fri, 18 Jan 2013 00:00:00 GMT Hi, new here, but very grateful for the support from everyone...I had a radical nephrectomy done on my left kidney on Jan 2, 2009. I am a 32 year old mom of 5 young kids. I had full time help for the first 4 weeks, but have been on my own since...Well, my husband is here, but with work and school, you know. He's an amazing support to me, but I still feel like I'm struggling. My question  is...I called my surgeon's office last week and asked if I could have a refil on my davocet because I'm still having quite a bit of pain all day long. The nurse said that none of their patients EVER have pain from this surgery after 2-4 weeks, and that it must be from something else. I just put the phone down and cried...I felt like she was calling me a liar. I had a hard time calling her in the first place because I definitely don't want to get dependent on strong pain pills, I've seen how that can affect people, but I'm still in pain. So what should I do? How long did it take you all to get off of pain meds? Am I crazy?   http://www.cancercompass.com/message-board/message/all,33064,0.htm twoplusfive Tue, 10 Feb 2009 00:00:00 GMT My husband has been on Sutent for a year and a half.  He had a CT scan yesterday and it showed more growth of the cancer, so the Sutent has quit working.  They are going to switch him to Afinitor.  Anyone have any experience with this drug? http://www.cancercompass.com/message-board/message/all,71593,0.htm vetgirl76 Wed, 01 May 2013 00:00:00 GMT Hi, I am a 37 year old mother of 3 young children. I received a call from my doctor yesterday to give me the results of my CT scan. I have been having upper abdominal pain off and on for several months...I always thought is was muscle strain and when the pain went away, I just forgot about it. I finally decided to go to my doctor and he had me go for this test. I was being checked for a hernia. To my surprise, my results indicate a 6 cm mass on my left kidney. I am terrified since what I have read on the internet all seem to have the word cancer attached to it. I have been referred to a urologist to learn more about what is going on I hope. My question would be, besides cancer, what else could this mass be?  http://www.cancercompass.com/message-board/message/all,18153,0.htm MICHBORDX Wed, 21 Nov 2007 00:00:00 GMT in dec. they found a mass in the upper pole of my left kidney after alot of diff test was told i did in fact have cancer so i will be having an open partial nephrectomy on the 24th of this month and i was hoping to get some insite on what to expect and just kinda be at ease with the results i guess any help would be welcomed thank you   http://www.cancercompass.com/message-board/message/all,71321,0.htm renalcell Sun, 14 Apr 2013 00:00:00 GMT My mother was diagnosed with kidney cancer in Dec 2012 and had her left kidney removed in Jan. The doctor sent her to her cancer doctor and they did some tests and found that it had spread to her lungs, some pots on her rib, and a some spots on a bone in her back. After waiting for financial help she started taking Sutent 28/14. She is also on a shot for her bones, not sure of spelling but sounds like (exgeven ). We have noticed a very dramatic change in my moms speech. Having a hard time speaking her thoughts. Also she look very tired, and has blisters on her tongue. Does anyone know if these are side effects? Does it get any better? How can we help her with her memory? Any help at all would be greatly appreciated! http://www.cancercompass.com/message-board/message/all,71389,0.htm Loveyoumom Fri, 19 Apr 2013 00:00:00 GMT ANyone know - what are the comparative advantages and disadvantages of the 4-week-on-2-week-off cycle of Sutent comapred with the cycle of two weeks on and one off?  Is there any eividnece of differences in effectiveness of the drug?  (I realize the side effects can be lighter with the shorter cycle) Is there a reason why the MDs and the producers suggest starting with the longer 4-on-2-off cycle? Thanks! http://www.cancercompass.com/message-board/message/all,67023,0.htm splaut Fri, 06 Jul 2012 00:00:00 GMT