Latest Kidney Cancer discussions http://www.cancercompass.com/message-board/cancers/kidney-cancer/1,0,119,8.htm Fri, 16 May 2008 00:00:00 GMT Fri, 16 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hey everyone! Havent posted in a while so I thought I would give an update for those I have talked with since I started. Just received my 4th dose of Avastin today and I go in a week from tomorrow for a brain and CAT scan. I have been having some head aches since I started on the Avastin once so severe I couldnt keep my right eye open all the way. Other times, not even close to that bad but still ached. So, my oncologist suggested we get both scans done at the same time since I havent had a brain scan done since the summer of 06 when I spent 2 1/2 months in the hospital with 3 surgeries and even Parentinitus. Feeling great otherwise, except for being tired a few days after the Avastin. Everyone in the medical field I talk to about the Avastin tell me it works really great on a lot of people. Whenever I go up to the hospital (Swedish in Seattle) I overhear patients around me getting Avastin also. Sure is a lot different then the side effects I had while on the Sutent. Oh well, the Sutent worked for 12 cycles before it stopped helping. This site has helped me get to this point. Helping me feel better when I feel down and answer questions I have. It has allowed me to share my experiences with those of you who have asked. Keep posting, it may not seem much by it is amazing how much better you feel when you can share experiences and information we learn. Thanks for being there!Terry http://www.cancercompass.com/message-board/message/all,24036,0.htm Terryjoe Thu, 15 May 2008 00:00:00 GMT This past Thursday, I just had my 5th Torisel treatment.Last time they had to stick me 4 times before they found a vein. So next Thursday the 15th. I am having a port put in and then I am going for my Chemo. treatment right after it is installed. All the side effects that I did have are gone. The blisters in the mouth, I used Colgates Orabase for Canker and mouth sores. (CVS) and Benadryl for the blisters and itching on my feet.  Another side effect that has turned up, I have not read about, but wonder if anyone else has experienced it. I have nodules turning up on my scalp.They feel like small bumps all over. Good thing I still have my hair, which covers the bumps. (I just hope they don't spread to my face, or I might end up on the Science Fiction  Channel as one of those bumpy face monsters.Has anyone had this side effect, or can it be something worse?I did have a C Scan taken this morning of my abdomen/ pelvis/ chest and head. But will not know the results for a few days yet.It is a Stage 4 Kidney Cancer that I have.  That's it for now, and I hope all you mothers out there have a wonderful Mother's  Day. And know that all that are connected to this Cancer Compass forum as a patient or care giver for a loved one with this insidious disease, you are all in my prayers. God Bless You.... oldmom http://www.cancercompass.com/message-board/message/all,23913,0.htm Yeoldmom Sat, 10 May 2008 00:00:00 GMT Does anyone have any suggestions for dealing with dizziness from Sutent?  Dizziness appears to be a common side effect since the label on the prescription bottle says "may cause dizziness."  My husband is 4 days into his second cycle of Sutent and is having severe dizziness to the point that he has to sit down every time he stands up; he's not experiencing any other side effects and tolerated the first cycle well.  I was hoping someone might have a suggestion to help eliminate or lessen the dizziness - any suggestions for prescriptive meds, over-the-counter meds, or alternative treatments would be greatly appreciated.  http://www.cancercompass.com/message-board/message/all,23912,0.htm Pounce Sat, 10 May 2008 00:00:00 GMT My father has been battling RCC for almost 5 years now and has been on several cycles of Sutent. Frankly he can not endure much more of the Sutent and I was told this was a less painful yet effective method to try. I have read in several places about the benefits of Poly MVA and I was wondering if anyone here has tried it or knows someone who has.Here are the sites I have visited thus far:http://www.polymva.com/  http://www.polymvasurvivors.com/index.html   Any additional information will be greatly accepted.  Thank you and God Bless.    http://www.cancercompass.com/message-board/message/all,23875,0.htm tidouble Fri, 09 May 2008 00:00:00 GMT My husband, aged 54, was diagnosed with stage IV kidney cancer in early November.  During the last 6 months I have never posted but have come to this forum over and over for hope, encouragement and ideas of how to deal with the side effects-emotional and physical.I'll tell our story briefly so the readers who are early in their journey can know a bit about us.  My husband's first symptom was a bone met in his jaw which flared up-we initially thought it was a dental problem and were shocked to learn after biopsy and CT scans that he had a huge kidney mass, mutiple bone and lung mets.    This disease killed his father soon after diagnosis in 2001.  We had worked in radiation therapy for 20 years and looked at those scans and completely lost hope. We did force ourselves-with the support of friends and family-to get two or more opinions on everything and search out experts in kidney cancer for opinions.  Although my husband was initially discouraged from pursuing a nephrectomy due to lack of supporting data, at Emory we were told there was some evidence it might be helpful.  He opted for a hand assisted laparoscopic and was walking a mile in a week-amazing.  He found an oncologist with expertise in kidney cancer and enrolled in a clinical trial for Trovax  (randomized-only a 50-50 chance he is getting the real thing-but still we thought worthwhile).  He just got results of his first CT's today after 3 months of Sutent-his lung mets are responding nicely-his bone mets  also responded a little and no new mets.  We know he will always be on chemo but our oncologist is very encouraging about the pipeline of new drugs.  We would all rather have a cure, but we know that its going to be a chronic disease for him, a marathon.   Dispite the side effects we are grateful for the drugs and treatment that are providing the gift of time, a decent quality of life and a future we thought was lost to us.We are only starting down this path but I'll give a little advice for others who are just dealing with a diagnosis.  You need emotional support during this process-this forum, the oncologist's counselor and the support of our friends and family have helped so much.  Seek kidney cancer specialists and do what they say-the treatments are today are improving constantly.  And we are lucky that the first treatments worked for my husband -but we know one day it won't-realize you may need other options. Thanks to all of you old soldiers and cancer angels who are helping the rest of us get through.  And good luck and prayers to those starting out.Susan in ATL  http://www.cancercompass.com/message-board/message/all,23823,0.htm susaninatl Wed, 07 May 2008 00:00:00 GMT On 4/14/2008 I had Hand assisted Laparoscopic Partial Nephrectomy for a 2.5cm solid mass on my left kidney. A biopsy was done while I was on the table to determine if it was cancerous or not and also to tell the surgeon how much of the kidney to remove. A “frozen section” of the kidney was done and was reported as benign. Good news but I spent 4 days in the hospital because of severe nausea and just not feeling well. I was called back to the office a week after my surgery and was told that the first pathologist had made a mistake and I did have stage 2 RCC. The doctor was really upset with this and he added that all of the tumor was not removed and he wanted to get me back into surgery as soon as possible. I was really upset about having the 2nd surgery. One reason being I was having a hard time recovering from the first surgery. I still could not eat. So 12 days after my initial surgery I was in the in the hospital having it done the second time. I ended up losing about 20% of my kidney which isn’t too bad. After a few more days in the hospital I went home just as sick as I was the first time.It has now been 3 weeks since the first surgery and 9 days after my second and I am still so sick!! I have lost 20lbs in 3 weeks. I am overweight but it really sucks losing it this way. I am able to eat a little bit but I am still plagued with nausea and just flat out don’t feel well. My Doctor doesn’t understand why I am feeling so bad. He says maybe it is still the anesthesia. I have never had problems with anesthesia in the past.  I don't take pain medication, so it is not that. My husband doesn’t understand about me being sick and says I just need to get out and start doing things. I tried to run out to the store this evening just to grab a couple of things and it just about killed me. Has anyone had trouble “recovering” from surgery? I am scheduled to go back to work in a week and there is just no way. I am really having a hard time. My husband is gone almost all of the time and I am spending all of my recovery time by myself. That doesn’t help either. I guess really I just needed to vent .If anyone has any feedback, it would be greatly appreciated. Thanks for listening. http://www.cancercompass.com/message-board/message/all,23810,0.htm crowwoman98 Tue, 06 May 2008 00:00:00 GMT Hello,My 27 yr old daughter has been diagnosed with a mass in one of her kidneys. She was sent by her primary care nurse to a Neprologist, however that Dr. was too busy to see her for a month, so we were then referred to a Urologist who is a surgeon. He has advised her to have a biopsy. We then went to get a second opinion to another Urologists who also turned out to be a surgeon. He wants to take the kidney out. I feel that we have made a mistake going to a surgeon. I feel that a diagnosis from a cancer specialist should first give their opinion then we find a surgeon if necessary.It seems that if you do not advocate for yourself you could end up making the wrong decisions concerning your life. Wouldn't an oncologist or a neprologist be the first step instead of these surgury happy Dr'.s ? I am not in denial, or avoiding what 'may' be the inevitable but shouldn't this be approached differently? I would so much appreciate some advice. I also have asked about nutrition, excercise and these two Dr's do not believe that they help at all. Please give me your opinion's. Thank you, allie 1 http://www.cancercompass.com/message-board/message/all,23786,0.htm allie1 Tue, 06 May 2008 00:00:00 GMT After a little over a year of battling stage 4 RCC to the lungs,my recent CT scan showed no sign of cancer. I have been on 25 mg. of sutent since April 2007 after being unable to tolerate 50 mg. in March 2007. To God be the glory. I am so blessed by His grace. I pray for all of you who are in this battle. Don't loose faith. God is good. http://www.cancercompass.com/message-board/message/all,23737,0.htm Dworth Sun, 04 May 2008 00:00:00 GMT Hi, A close friend of mine finished his second 4 week cycle of Sutent. He has been off the drug for 2 weeks with no plans to take it again due to severe side effects.  He developed a severe sore throat (blisters). His red blood cell count dropped dramatically, leaving him so weak that he was essentially bedridden. A blood transfusion has helped elevate his red blood cells. Does anyone know how long it takes for the sore throat to resolve once the Sutent has been discontinued? Any information would be greatly appreciated!Thank you. http://www.cancercompass.com/message-board/message/all,23732,0.htm HealthQuestions Sun, 04 May 2008 00:00:00 GMT I have tried to get information from the internet and I can't believe I am posting in a Cancer forum, I certainly hope that's not what it is. I had an MRI of my back after surgery for a disc. They find a 3 cm cyst with a 1cm nodule. They recommend a CT scan to find out what it is. It is done with and without contrast. My family Doctor gets the report and can't tell me what it is?! He wants to schedule me to see a specialist because he still doesn't know? He said it is a lesion that he wants a specialist to look at. I thought that's what the CT scan was for?Please tell me if I should be concerned.Thanks,Rob http://www.cancercompass.com/message-board/message/all,23590,0.htm Rob58185 Wed, 30 Apr 2008 00:00:00 GMT I'm 17 years old and I found out a month ago that I had Stage 2 kidney cancer. I can't really talk to my friends about it because its so hard for them. And I was looking for someone else who went through it and understands what I'm going through. Just to make friends basically. Email me if anyone wants to talk. --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- http://www.cancercompass.com/message-board/message/all,23549,0.htm wrachelle Tue, 29 Apr 2008 00:00:00 GMT I just found this message board this morning and I want to say thank you to everyone who has posted info on their RCC and their use of Sutent.  In about 30 minutes, I am headed to the oncoclogist's office with my mother-in-law to find out if the spots in her lung are a new primary cancer or mastastized RCC.  Sutent is what her dr will put her on if it is the mas RCC - which is what we are thinking and what we are prepared for.  I read the literature the dr gave us 2 days ago on Sutent but your posts have been more enlightening.  I know I will visit this message board many times from now on, looking for info, encouragement and hope.  The messages I have read this morning have given all of that and more.  http://www.cancercompass.com/message-board/message/all,23404,0.htm beverlyw Fri, 25 Apr 2008 00:00:00 GMT Hello, this is my first time to post.  I too am on Sutent as of the middle of Feb. this year.  I went through 2 rounds of IL-2 treatments in the hospital to find it was not successful.  My doctor felt that Sutent was the best drug to start with.  I am on my second month with that and not without difficult side effects.  My mouth, tongue and gums took a beating!  At the end of the first dose, I could not handle it any longer!  I went off it 2 days early and took 2 weeks off.  I am through the 14 day period now and am off it for a week.  The cancer had spread to my lungs and spine.  I am going in tomorrow for a CAT to see if the Sutent is working.  God, I hope so!!!!!!!!!! http://www.cancercompass.com/message-board/message/all,23376,0.htm lessonekidney Thu, 24 Apr 2008 00:00:00 GMT Does some one knows how much sutent cost and how one can buy in states if i am a visitor. secondly does this drug is also effective in brain secondaries?? please help   http://www.cancercompass.com/message-board/message/all,23372,0.htm unnas Thu, 24 Apr 2008 00:00:00 GMT My Father was just diagnosed with Stage 4 RCC.  After blood in his urine we found out he has kidney cancer that has mestastised.  We had tests run and now we are deciding on the best treatment. The doctor mentioned Sutent. http://www.cancercompass.com/message-board/message/all,23301,0.htm mocity Tue, 22 Apr 2008 00:00:00 GMT  My father (age 72) has suspected Stage IV kidney cancer that they think has metasticized to the lungs and other organs, e.g., liver.  They are doing a kidney and liver biopsy on Wednesday, but have not yet done MRI's and are relying on his symptoms (chronic cough, pain in side, etc.) and chest x-rays and ultra-sound as the basis for the biopsies.  My uncle is a urologist has talked to my father's doctor, and has suggested that we should brace ourselves for the worst.I am hoping somehow that they are wrong, but am wondering from other patients in similar situations which hospitals they felt that they received the best, most thorough care, in our area b/c I would really like to make sure he gets the best treatment. It makes me sick to think that this might have been treatable if we had caught it earlier.  His onset of symptoms was in November w/ some of them going away, but he has a chronic cough right now.  I'm not sure of the other symptoms because he's very stubborn and tries to protect us.  The awful doctor/hospital he went to initially had taken chest rays (I think in December) and found nothing in the lungs so I am very confused how they can detect nodules now, after only a few months. I want to make sure that we do the best we can for him so any advice on where he can get good care (and red flags to be aware) would be appreciated.I think he vascillates between denial and shock/fear and am scared so much that he may not be able to handle a frightening diagnosis.   I can barely think straight  myself so trying to get as much information as I can so I can help him.  Thanks so much in advance. http://www.cancercompass.com/message-board/message/all,23270,0.htm howtocope Mon, 21 Apr 2008 00:00:00 GMT has anyone had nodules on or near their thyroid? Just had a ct scan that showed nodules so they will do more testing when I return. If you had thyroid nodules or nodules near the thyroid, were they cancerous and what treatment did you receive?thanks,Laura http://www.cancercompass.com/message-board/message/all,23188,0.htm pooh2323 Fri, 18 Apr 2008 00:00:00 GMT Has anyone had thickening or hardening of the right colon as a side effect of Sutent? If so, what was done for the problem.Thanks,Laura http://www.cancercompass.com/message-board/message/all,23181,0.htm pooh2323 Fri, 18 Apr 2008 00:00:00 GMT Please send some extra prayers to David Foster and his family. He is still in the hospital, and his family needs our support. He has been on this site many times, and I am sure most of you are familiar with his Blog. kicking kidney cancers arse. He is an amazing man, and has helped many of us for a long time. Now we need to help him with some extra prayers. Laura http://www.cancercompass.com/message-board/message/all,23075,0.htm Laurameg Tue, 15 Apr 2008 00:00:00 GMT Hello. This is my first posting. My husband has just been diagnosed with kidney cancer, a 10 cm tumor. They must remove the entire kidney. Because of the size of the tumor, he cannot have laparoscopic surgery. I know it varies from patient to patient, but I would like to know what to expect. The doctor says it is a rough recovery, lots of pain. Can anyone tell me what they have experienced? It would be so helpful for me, for us, to know what to expect.I appreciate your help. This is all such a shock and everything seems to be happening so fast. http://www.cancercompass.com/message-board/message/all,23070,0.htm anniej Tue, 15 Apr 2008 00:00:00 GMT Is there anyone out there that was diagnosed with kidney cancer stage 3B that went into renal vein only and has a positive story to tell? http://www.cancercompass.com/message-board/message/all,23065,0.htm MaggieFB01 Mon, 14 Apr 2008 00:00:00 GMT I have kidney cancer and i am going into surgery april 16th. I had just had my daughter in January and I was put on the birthcontrol shot a month after. a few days after the shot i started feeling strange and havent stoped having what i thought was my period for the past month. This past weekend i was having contractions and the next thing i know i give birth to a hugh piece of flesh. white meat whatever you want to call it. 5 hours later another chunk. But after a long contration they came out. I called my obgyn and he just told me to take a pregnancy test and of course it came back neg. because i have been miscarrying for so long. he told me it was just my period, but i cant see my period giving me contractions and allowing my cervix to open and let this out. The second piece i sware looks like legs and a butt. But who knows. They told me not to worry about this but i have been bleeding non stop and still having horrible pains and my stomach just doesnt feel right. Im only 21 and im dealing with this surgery and im just scared that if i tell my doctor about this then they will stop the surgery. so what im asking is....1. do you think its important i tell my doctor?2. do you think i had a misscarrage? sp?3. do you think i need to bring this to the doctors with me and show them what came out?4. Do you think the obgyn is wrong for not testing me to see if i was pregnant before giving me this shot?Im just freaking out. This is too much all at once. And for the past month and a half my doctor has been trying to find out why ive been having stomach pains for so long. they thought ulcers and i got the camera down my throat and no ulcers and we have just been going threw so much and paying for all these specialist for nothing all because my obgyn didnt test me first before giving me this birthcontrol shot. http://www.cancercompass.com/message-board/message/all,23030,0.htm mdrowley Mon, 14 Apr 2008 00:00:00 GMT about to sign up for a clinical trial at NIH....would appreciate  any information you have http://www.cancercompass.com/message-board/message/all,22999,0.htm Jvarg Sun, 13 Apr 2008 00:00:00 GMT I am on my 2nd session of sutent. the 1st month it wasn't bad. i had mouth irritation and slight hand and feet problems. this month 1/2 way through the 3rd week my hands got pretty bad. Did any one else notice the "sores" seem to come out on weaker spots, ex: where i had calluses on sides of fingers or a scrape that hadn't healed yet. My sores are not open. They are bright red marks 1/2 in. to 2 in. that look like blisters with no fluid and hurt to just touch them. So far nothing has helped. I just heard about icing them and i"m going to try that now. Paula  http://www.cancercompass.com/message-board/message/all,22986,0.htm sean12 Sat, 12 Apr 2008 00:00:00 GMT I had my l kidney removed Dec. 2006 due to a stage one grade 2 (5.5 cm)and have been followed by my urologist with blood work, sonograms, and chest x-rays every three months.  I have been reading kidney cancer posts since then but this is the first time I have posted anything.  I'm wondering if there are post nephrectomy cancer survivors who have remained cancer free for more than 5 years out there?  The literature states that stage one kidney cancer have a 90-95% survival rate at 5 years.  Also, does every little ache, pain or unusual sensation make you paranoid?  http://www.cancercompass.com/message-board/message/all,22961,0.htm schoolnurse Fri, 11 Apr 2008 00:00:00 GMT