CancerCompass message board discussion started by Nebraska on 10/10/2006 http://www.cancercompass.com/message-board/message/all,7197,0.htm Wed, 09 Jul 2008 00:00:00 GMT Wed, 09 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi my name is lou, my husband has rcc it has went to his lung now to his brain. Just got done with radiation treatments. Q. In 2 weeks he will have a mri done to see if the tumor has got smaller if it has do we have some kind of surgery???? Or some kind of treatment like sutent??? But now what do we do about the smaller ones that the surgeon won't touch??????? I stop in to the dr's office every day to get these answers but the resep. Keeps telling me she'll leave the message with the dr. Thanks lou Nebraska Tue, 10 Oct 2006 00:00:00 GMT My friend, maybe it's time to seek a second opinion. Usually a second opinion is needed to confirm a condition. However, if a doctor in not being "pro-active" then it's time to change doctors. Kewlsense Wed, 11 Oct 2006 00:00:00 GMT Lou, Kewlsense gave you some good advice. I am a RRC participant for now 2 years. I've left many postings on this website under both Kidney and Renal outlining my experiences and successes. Given those experiences I have some additonal suggestions: 1) find an oncologist who specializes in RCC. We have discovered through our journey that not all cancers are the same and not all oncologists are fimiliar with RCC---it makes a big difference. For example, (please keep in mind that I am not a doctor) we have been told by many doctors and read many articles that state--RCC does not respond to chemo or radiation. 2) not to scare you but RCC is a fairly agressive form of cancer and time is not your friend. Again, Kewlsense gave you some good advice. Try to find a proactive rather than reactive oncologist. The first oncologist that we met with knew less about RCC than we did and we quickly decided not to waste our time. My expectation was to find a doctor who would treat my cancer as if he/she had it themselves. We luckliy found such a oncologist at the University of Minnesota Hospital in Minneapolis. I'm sure that there are other fine faciliites available. My experience and success has been with the drug Sutent (made by Pfizer). I understand that there is another drug approved for RCC called Nexavar (made by Bayer). There are multiple postings on this message board for both drugs but please feel free to contact me if you have questions regarding Sutent. In response to your question "smaller ones that the surgeon won't touch"---the new drugs, such as Sutent and Nexavar have had excellent results with smaller tumors. Please keep a positive outlook and stay in touch. Bunker Wed, 11 Oct 2006 00:00:00 GMT Received a phone call from the dr's office today my husband has an appt. On the 19th for a mri. Then we go to another dr. On the 24th to view the cd. We really dont have a problem with our oncologist its the lady at the front desk that seems to have a problem getting the messages to the dr in a timely manor. Q...if on the mri shows that the larger tumor did not shrink what do you think we should do next as far as a treatment (sterotatic, gama ???) Q...if the mri shows shrinkage do you think the next step should be surgery? Thanks lou Nebraska Fri, 13 Oct 2006 00:00:00 GMT Good morning Lou. I'm glad to hear that your doctor got back to you and your husband. I'll give you my opinion on your two questions but please remember---I am not a doctor---but simply basing my answers on my experience and questions that we have asked. I would strongly recommend that you ask your doctor these same questions. Q#1: I'm sure that I don't know all of your husband's medical history but if it were me I would try the most proative/aggressive treatment available. As I said before, we have been told that RCC is normally a very aggressive form of cancer. I'm not familar with sterotatic but gama sounds like radiation. Radiation is not an effective treatment for RCC. Q#2: I beleive that surgery has always been the most favored treatment for RRC in the past. However, things have changed dramatically in the past 2-3 years. First, is surgery to that part of the body (brain) too risky? I don't know and I don't know your husband's situation well enough to give an opinion--yes or no. There have been new drugs developed; tested and approved by the FDA. They are Sutent and Nexavar. My experience has been with Sutent and I am a walking example--it does work. Now that I have answered both questions I would like to take this converstion in a slightly different direction. Normally, I try to be very postive on this message board and I never "lecture". I'm going to take a chance in your situation because I feel so strongly that I was given a second chance to help others. If I offend you please keep in mind that I am only trying to help you and your husband. Here goes---I'm basing some of my comments off your wording in your posting. I realize that a person can get bombardied with a lot of new information and terms under these conditions but I'm going to respond to your wording. First, you mentioned no problem with your doctor but only with the lady at the front desk. I'm sorry but this is a package deal. If you cannot get through to your doctor on a timiely basis it really doesn't matter what the reason. I would discuss this with your doctor if you have not already. Your husband deserves their undivided attention. Second, you've mentioned radiation multiple times. Again, I apologize but that concerns me greatly. Unfortunately, I'm probably now challenging your doctor's knowledge of RCC. We have been told many many times that radiation and chemo are NOT effective treatments for RCC. Third, an MRI on the 19th. My non-medical understanding of an MRI is that this scan will show a dark spot or mass. Throughout my whole journey I think I only had one MRI---at the very beginning which is how they discovered the mass on my kidney and diagnosed me with RCC. Since then, I have had numerous CT scans and numerous PET scans. If you read the many postings on this message board everyone refers to a CT scan, not an MRI. My doctor actually prefers a PET scan over a CT scan. They are similar tests but we understand that while the CT scan works well on large tumors the PET scan works better on small tumors PLUS the PET scan shows metabolic activity (meaning whether the tumor is alive or not). Back to the MRI---again this worries me. If I were the patient I would view this approach as not aggressive enough and I strongly feel that time is not your friend. Future treatment? I'm a BIG fan of the new drugs Nexavar and Sutent. While they may not be a fit for everyone they have had amazing results---just read some of the postings on this message board. I was treated with Sutent and can speak to it's fantastic results. Please make sure that your husband has a knowledgable doctor and again I apologize about the "lecture" but I feel so passionate about this disease. Hope to hear from you again. Bunker Mon, 16 Oct 2006 00:00:00 GMT good morning to you to greg,i'm sorry, i'm just so confused right now. my husband told me yesterday that he had a bloody stool. i cried all day at work. i thought when we fisrt found out that my husband had to have his kidney removed, i thought maybe we had caught this disease on time. but i guessed wrong. we both thought that surgery would be our best chance at life.but it seems when we want to hear some good news it never comes.my husband goes to see a neo.surgeon tommorrow, again maybe for more surgery, i don't think he can handle another surgery. i can't get him to eat hardly anything he says things just don't taste good, whats up with that????????? thats been going on for quit a while now?? i viewed the cd's that we're suppose to take to the dr tommorrow and read his report. it sounds like the bigger mass has gone down but now the smaller one (8mm) is now 16mm.i'm not really sure where these are located at yet we're hoping this dr will go over the cd's with us. we're still waiting for the insurance co. to ok the drug sutent but we haven't heard anything back yet.q...if this has reached his colon/ bowel area will this drug sutent or nexavar help him more than surgery??? thanks again for your help, lou Nebraska Mon, 23 Oct 2006 00:00:00 GMT Lou, take a deep breath and understand----you and your husband have had a lot thrown at you recently. You will get through this. I've often said that I think my journey was tougher on my wife than it was on me. As the patient I knew how I felt but as the spouse she just got to worry and worry. I think this is normal but not fair. I also wanted to apologize for being so frank in my last posting. I've felt bad ever since I hit the send button. Let's start this time with some more questions. Are you working with a renal cell cancer specialist? Not just a doctor or surgeon but an oncologist who specializes in RCC? You mentioned "surgery before"; "more surgery" and "another surgery". What types of surgeries has your husband already had? I read that he had radiation treatments, correct? Is he taking any type of treatment right now? On the comment "we're still waiting for the insurance company to OK the drug Sutent". My advice there would be to call them, and then call them, and then call them. Be polite but be persistent. Don't take---we'll get back to you----as an answer. Renal cell cancer is very aggressive and you should not have to wait for an answer. I will give you my opinion on whether or not Sutent can work if the cancer has spread. Please remember, I'm not a doctor but a patient. Sutent did work for me (and has for many others that I talk to or read about) even after the cancer has appeared somewhere other than the kidney. I don't know so much about Nexavar but I've read about some good results as well. As a Sutent success story, I call it my wonderdrug. Bunker Tue, 24 Oct 2006 00:00:00 GMT hey greg don't worry about your last posting to me. i like when someone can just come out and say what they mean and answer my questions straight up!!so don't apologize i'm fine with your answers.this all started with my husband in april 2006. question#1-you know i'm not really sure if his a rcc specialist??but his appt. yesterday with this dr.he seemed to be a rcc specialist.i guess i've never really asked.he talked to us like he knew something and said alot of thing i wanted to hear and not. q. #2-surgeries: kidney removal andlower lung lobe removal and now their talking about doing brain surgery within the next week. q.#3-radiaton treatments: yes, whole brain, but it did know good which i knew it won't.q.#4-no he's not taking any kind of treatment right now. my question to you is don't you think he should have been on some kind of treatment plan by now? q.-did your rcc spread else where? if you don't mind me asking. later lou Nebraska Wed, 25 Oct 2006 00:00:00 GMT Thanks Lou. I'm a pretty straight "shooter". I also know that this disease is very aggressive and not one to wait around. I always tell people with RCC that "Time Is Not Your Friend". Based on just what you've told me yes, I do believe that your husband should already have been on some kind of treatment. The doctors seem to be moving too slow. However, that is in the past and you can't change that. What about your husband's immediate future? Are they starting some type of treatment immediately? If not, I would really demand a different answer. If yes, what are they planning to do? My RCC did spread somewhere else. It started in my left kidney (which was removed) and then reappeared in just 5 months on the lower tip of my liver. That tumor and a portion of my liver were removed and then 3 months later it was back in the same spot on my liver---see how fast it moves!! That is when I started on Sutent. If your husband is a candidate for Sutent I would certainly recommend he try it. One last recommedation just because I am persistent. Please find out what your new doctor's background is relative to RCC--is he a specialist? Simply ask him. The reason I keep bringing this up is that the first oncologist we met whith had NO clue about RCC. I'm sure he was competant with other cancers but had to read from a book on RCC. We only went to one appointment and started looking immediately for another oncologist. Please let me know if you have other questions. Bunker Thu, 26 Oct 2006 00:00:00 GMT hi greg, my husband has a pet scan tomorrow but the insurance co. just called and said it's not approved yet,shortly after the dr. that wanted this test done called and was very p-o-ed with the ins. co. because they won't approve this test.he's been on them for 5 days now. the only thing is that this test as you know is very costly(about $3,000) i called our primary dr. to do some pushing with the ins. co.to see if he can get the pet scan approved. i don't know if its gonna do any good but i have to try something. i told my husband if the ins. co. won't okay this test we're gonna have to find some way to come up with the money. i don't know i'm getting really scared now all i want to do is cry and cry and cry. we kinda got oked by the ins. co. for sutent we're just waiting on one more paper that needs to be signed.i'm sorry for blabing on i just needed someone to talk to thanks lou Nebraska Mon, 30 Oct 2006 00:00:00 GMT Blab away that is what this board is for. My heart goes out to you. We live in Canada and our system is different. Our insurance did cover the cost of sutent and we are very lucky. Our CT's and other scans are covered by our Medicare system. I would be in as much panic as you if I couldn't get the test my husband needs. Always remember the squeeky wheel gets the grease so plug ahead and stop at no one. Think of you Mazzy Mazzy Tue, 31 Oct 2006 00:00:00 GMT Good morning Lou. You are on the right course and keep up the pressure on your insurance company. Polite but persistant is my motto. It sounds like you are really close to achieving the Sutent treatments. I hope this continues to go well. Once your husband starts treatments please let me know what questions I can answer. Our experience was that while there were side effects most if not all were treatable with some other medication or "trick". Good luck on your journey and let me know how I can help. Bunker Tue, 31 Oct 2006 00:00:00 GMT Good Evening Greg, Well As I Said The Ins. Co. Didn't Approve The Pet Test Only Because I Guess They Thought He Was On A Clinical Trial How They Came To That Don't Know. The Dr.Was In Contact With The Ins.Co. He Wrote And Sent An Appeal Paper To The Company. Well Instead Of A Pet Today The Dr. Ordered A Bone Scan. Won't Find Out The Results Till Mon. Or Tues.On Your Reply You Said Something About Side Affects From The Sutent If You Don't Mind Me Asking What Were They???How Did You Handle It??What Med's Did You Take To Help With The Side Affects??Were You Still Able To Work??If So How Long Did It Take You To Get Back To Work After You Started Taking Sutent??Later Lou Nebraska Fri, 03 Nov 2006 00:00:00 GMT hey mary thanks for your reply,i'm tring my best to think positive but its getting harder and harder every day. just when we thought we were ahead of this disease it seems like its always a step ahead of us,its almost getting to a point to where were not getting anywhere. i asked the dr. when he was going to start my husband on sutent he said: after he has had brain surgery. i just don't understand whats the differenceif he starts now or after the surgery?????????thanks lou Nebraska Fri, 03 Nov 2006 00:00:00 GMT Yes I agree with you Lou one step forward and two steps back. However you have to keep going forward and with the back steps when they come. I share you feeling as I want things to happen NOW and when they don't I become anxious and nervous. It is so hard to sit and watch this happen and know you are at the hands of others but I trust our doctors and I feel they are doing the best they can but it doesn't take away the frustration. Do they know when your husbands surgery will be yet? There are days when you just can't be positive and that is okay. They are usually my crying days and I try hard not to let my husband see it. The shower is a good place to cry. Then I try to get myself back together and start all over again. It is the roller coaster of their lives and if I am this nervouse I fathem how nervous our husbands must be. Remember "If God brings you to it - He will bring you through it" Hang in girl. You are your hubby are in our prayers. Keep me posted Mazzy Mazzy Sat, 04 Nov 2006 00:00:00 GMT mary still not sure when the dr. wants to do the surgery,he wanted to do it betweem nov. 6-10,but we're still waiting to see if the ins. co. is going to okay the pet.we went in friday for a bone scan waiting on results.q...the other dr. wants to start him on sutent after he has surgery, why after surgery and not right now????????lou Nebraska Sun, 05 Nov 2006 00:00:00 GMT Nice to hear from you so soon. It sounds like your persistence with the insurance company is starting to pay off. Stay the course. On your questions---the side effects are described as mostly "flu like". Nausea; stomach irritation; diarrea; mouth sores; change of taste and fatigue. I felt that all were tolerable and there are medications that can help with most. Not all patients have all of the side effects but fatigue seems to be one of the more common ones. I had it for all six treatments and learned some "tricks" that allowed me to handle it pretty well. I did work thoughout all of my treatments but I did set aside some "quiet" time each day to help with the fatigue. For example, when warm enough I would sit in my car over lunch and just rest my mind---this seemed to really help. I also have a saint for a wife and it sounds like you are very supportive as well. When I felt like resting, my wife understood. Not long naps but just relatively short rest periods. I'm probably forgetting some of the side effects and have not shared the details of some of the "tricks" we learned along the way. When your husband gets on Sutent and has some side effects we can talk more about specifics. Good luck with the bone scan results and please stay in touch. Bunker Mon, 06 Nov 2006 00:00:00 GMT Hi Lou haven't heard from you in a while. How are things going. Any news from the Insurance. My hubby is now on day 19 and all in all it has not been bad. He is on the highest dose 50mg and has tolerated it very well. A little blood pressure problem treated by medication and some stomach upset but that is easily handled. Everyone is different and meds effect everyone differently. One more week to do. Finished 1st cycle Nov 15th. So all in all can't say at this point it is bad at all. He has been on worse meds. Willard is doing good on his second cycle. So keep us posted and let us know what is happening with you and how things are going. Mazzy Mon, 06 Nov 2006 00:00:00 GMT hi greg,how are you doing today? fine i hope. well heres whats going on now, the dr. called this afternoon and said he wanted to talk to us about the bone scan results and go over the cd wiyh us.q....i'm a little scared of what he might tell us. is it possable that this rcc has already got into his bones??? if so will this drug sutent still work for him or not.q...will the dr. still do surgery on the tumors on his brain??? its alright just give it to me straight up if you can, okay talk to you later, lou Nebraska Mon, 06 Nov 2006 00:00:00 GMT hi mary how are you doing today, fine i hope.to your question, no,still haven't heard back from the ins. co. but the dr. called today and wants to talk with us about the bone scan ron took on friday. not to sure what his going to tell us, i don't think i'll be able to sleep tonite. you talked about "cycles" whats that all about, nobody has said anything about any cycles to us, can you please explain this, thanks lou Nebraska Mon, 06 Nov 2006 00:00:00 GMT Things are wonderful--thanks for asking. I always get nervious before my doctor visits too---I think that's natural. I've convinced myself to treat it like Christmas. If I get the "present" I want then things are really great. If I don't, I make the best of it and focus on the next step. My wife and I are pretty sold on Sutent and you should ask your doctor the same question but here's our spin. Sutent works via the bloodstream so anywhere the blood goes (brain, bones included) Sutent can also travel. This is really important in that it can get to places where surgery is not always possible. My best advice is to get your husband on Sutent as soon as possible and see if he has the same fantastic results as I did---or as many others on this website. Keep up your spirits and let's talk again after you meet with your doctor. Bunker Tue, 07 Nov 2006 00:00:00 GMT Ha Lou good to hear from you. I know you are frustrated but hang in. When I referred to cycles the drug Sutent works on a cycle of 28 days on and 14 days off so each time you do that it is a cycle. I know that Sutent/Nexavar are the new wonder drug but I personally feel you have to have the best Oncologist and one who will give you every option and every drug available that will work best for Ron. I know my hubby was on Intron A which a lot of people thought it didn't have great results however it worked for him for 4 years. We tried Nexavar and as I said before that was a disaster for my husband but could be good for others. Now we are trying Sutent and that is okay for him thus far however with Nexavar and Sutent they are new drugs and the results are still coming in. We don't look for the end result we look for longevity and quality of life. So I think you have to ask your Oncologist all they questions you have asked us and then between the three of you come up with what is best for your husband. I think it is amazing we have new drugs but each drug comes with its own set of problems so that is where I think the Oncologist comes in. So take a deep breath and face your meeting about the bone scan with an open mind and lots of questions. I will keep you in my prayers. Let me know how it all works out. Mazzy Mazzy Tue, 07 Nov 2006 00:00:00 GMT hi greg, hows your day going ? fine i hope. well my husband went in for brain surgery on thurs. 11-09-06. things turned out well.they removed two of the larger tumors out of the 14 he had.the surgeon came up to the hospital sunday morning to talk to us about our next step which would have been doing sterotastic radio treatment. he received an e-mail from the radiation oncologist(ro) saying she was refusing to treat my husband, i was a little confused as to why, he said that the (ro) said that it was not ethical or moral to her standards. the dr. wanted her to treat 3-4 mets at a time, high dose. the way our dr. talked that it was to many for her to treat at one time. "say what", i dont understand. the dr. is going to contact a few other (ro)for us to talk to.q..........im confused as to why this ro would refuse treatment for my husband,can you please help me figure this one out.thanks lou Nebraska Mon, 13 Nov 2006 00:00:00 GMT I'm glad to hear that your husband's surgery went well and it sounds like really good news. The treatment you mentioned (sterotastic radio) is not part of my experience and I've not read about that approach. Hopefully there is someone else reading this site who can answer that specific question. Remember when I said that in my opinion, a RCC patient needs to take charge of his/her own treatment decisions? If it were me, I would ask your doctor to explain what the other doctor met by "not ethical or moral". You mentioned "too many at one time" which may be part of the answer but if this is the case what approach would they recommend? And why? You might want to ask these same questions to the additonal RO's when you get to talk to them. Just don't let that process drag out very long and delay your husband's treatment. Also, please prepare yourself in the event that you are given some bad news but as a RCC patient I always wanted my doctor to be open and honest with me and my wife. We needed complete information to make our best decision. I can't help but ask what happened to your pursuit of the newer treatment approaches such as Sutent or Nexavar? These two drugs have had tremendous success. I know that your insurance company has really pushed back about covering the cost. What is your primary doctor saying about these two options? Does he feel that your husband is a good candidate for either treatment? Ask him to be honest. If he does not feel that your husband is a good candidate, why not? If he feels that he is a good candidate, what is he doing to help your husband get this treatment? I know for a fact that Pfizer has a drug cost assistance program for Sutent and I would think that Bayer would have something similair for Nexavar. It is fair for you to expect that your doctor work harder for you and your husband. Ask him this question---what would he do if HE were the patient? And why. I hope this has been helpful. See you soon. Bunker Mon, 13 Nov 2006 00:00:00 GMT hi greg, i just called the dr. we have a appt. with him tomorrow to talk about starting sutent i'm also waiting for a radiation oncologist to give me a call to set up a appt.q.....if someone is on sutent can they still have stero-radio treatment. by the way good questions i'll bring them up tommorrow at the dr. office.thanks again,lou Nebraska Mon, 13 Nov 2006 00:00:00 GMT Lou, this is betty jumping into your discussion. I have been with my 46 year old son Mark who has cancer metastasized from a GE juncture primary tumor to the liver (both lobes)with suspected cancer in a kidney and on the spine and just finished radiation for a chest wall tumor. He was told he had less than 3 months to live and that was nearly two years ago. He has yet to have a Pet scan and maybe he should have had one, but his doctors have always relied on CAT scans. i have found that it is helpful to ask the doctor why they want something like a Pet scan and how that test is related to treatment options. I also think it would help to find a way to stop crying and take good care of yourself. It will help to keep yourself strong. You need all the strength you can muster. I often say to myself and others "I am doing the best I can do and beyond that I can not go." You can check out a blog I write about my son's battles with cancer at http://www.thenextadventure.blogspot.com/ It helps me to write about what is going on. I would like to send you a big hug. Miss Betty The Mom Mon, 04 Dec 2006 00:00:00 GMT I stumbled across the cancer compas website just by chance and read your posting on the website. You are very interesting to me.Mum was diagnosed with rectal colon cancer...is that what RCC is that you talk of?She nearly finished 6 weeks of radiation and chemotherapy when the side effects came on hard, so had to stop. Alcerated mouth ,bladder infection (part of her bladder was removed when she had her rectal cancer removed, along with her uterus and 20 out of 30 lymph nodes which were found to be infected with the aggressive tumour.December 3rd was the operation. Now its April 1st, shes been into hospital twice to stabilize her with fluids and laxetes!because of obstruction. We've had the doctors meeting saying that the CT Scan shows an obstruction in the rectum which means that  the chemo/radiation did nothing but make her very ill. Then later the MRI showed nothing in the rectum.(we were told that the CT cant destinguish between tumour or inflamation from radiation, that's great i thought, its just inflamed tissue) Then we found out that there was also abnormal tissue in the small intestines. I have pushed and rang  and got mum into an appointment 1.5 hours away for a PET scan. this scan is very good they say in identifying tumour.Now that i've blabbed on for an hour about our situation i come to my question.Is there any information which you can suggest for us to ask about or look up? Mums very positive and headstrong, but sometimes she just feels she just cant go on any more. The lower abdomenal pain weakens her will power to go on and the morfine, buscopan and anti nausia medication just constipate her.You seem very knowledgable in this erea, I would sooooo appriciate any input you may have.Kindest Regards and well wishes to you pegipegi Tue, 01 Apr 2008 00:00:00 GMT