CancerCompass message board discussion started by MsDale on 1/20/2008 http://www.cancercompass.com/message-board/message/all,19920,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Does anyone have good results from using nexavar for primary liver cancer?  I'm not finding life extensions longer than a few months.  My husband was diagnosed in July of 2005.  Internal radiation (y90) was very helpful, but his liver function has declined so that is no longer an option.  So is there any good news out there about using nexavar? MsDale Sun, 20 Jan 2008 00:00:00 GMT My dad has been on Nexavar for three months.  His doctor said the tumors have shrunk in size.  He is going for his next cat-scan in three weeks and we are praying that he gets great news.  He also had the radiation treatment(sr90), two weeks ago.  We are hoping between the two he will be in remission.  Did your husband complain of bloating after the radiation?  He doesn't know if the bloating is coming from the radiation or the nexavar.  He also is complaining of being so tired.Overall he is glad that the Nexavar was available  to him.  His doctor is very positive with the results.  Good Luck.  You and your family are in my prayers.  lolomike Mon, 21 Jan 2008 00:00:00 GMT  My husband did not have bloating after radiation, but has it now.  The hospice doctors have explained it as being the progression of the liver disease.  As the disgestive system breaks down all functions of eating and processing food become more difficult. Watch out for constipation.  That may be the reason for the bloating.  We thought we had constipation under control because my husband was having regular (even every day) bowel movements, but when the bloating and pressure pain got extreme he had an x-ray and found he was full of bowel material all the way up to his stomach.  We had no idea!  Treating doctors seem to be so ignorant of this.  They prescribe massive amount of pain meds especially during and after treatments and never address the constipating effects of them.If he has pain meds and doesn't have diarrhea he's probably constipated.  Massive amounts of laxative are needed.Also Gas-x (simethicone) helps.  The hospice nurse says it makes the gas bubbles slippery so they don't get as big and cause as much pressure.Wow, internal radiation followed by nexavar sounds like a pretty aggressive treatment plan.  Y90 did a lot for my husband in terms of extending his life with quality time, but he was definitely tired and weak for several weeks after each one.  Please let us know how the next CT turns out.  We love good news.  Thanks for writing. MsDale Mon, 21 Jan 2008 00:00:00 GMT Thank you for all the information.  I spoke to my Dad and now have some info to speak to his doctor about.  I wish you and your husband all the best.  i will let you know about my Dad's cat-scan as soon as we know.  His doctor's are trying to be very aggresive.  Good luck with the nexavar.  lolomike Tue, 22 Jan 2008 00:00:00 GMT In hindsight, there was "swelling" from inflammation after my husband's    y90 treatments.  He did not call it "bloating" but it seems that the feeling would be similar.  It passed as he recovered from the treatment. MsDale Thu, 24 Jan 2008 00:00:00 GMT Thanks.  The doctor's said it is quite normal to have that feeling.  My Dad is feeling much better now.  Did you decide what you were going to do with the Nexavar?  Good luck. lolomike Thu, 24 Jan 2008 00:00:00 GMT My dad had a liver transplant five years ago.  Cancer liver cells from his old liver had traveled into his bloodstream and he now has stage IV cancer in his chest and hip.  Because he is a transplant recipient conventional chemo was not an option for him, so his Dr. put him on Nexavar 4 weeks ago.  He just had blood work done and his alfa/feta/protein #'s which were what indicated the tumors have gone down some which indicates the Nexavar really works even in such a small period of time.  He has his good days and his bad. He is 76 and the Nexavar does make him so tired that he needs to stay in bed for a day.  The next day he is feeling much better and able to go out and take care of his daily business, he has also lost his appetite.  These are general side effects, but well worth it if it will work. Good luck to you. sniffybear Wed, 30 Jan 2008 00:00:00 GMT Well my dad was rushed to the hospital on Saturday for jaundice and extreme stomach pain.  They told us that his bile dust is clogged with a small tumor and there is nothing they can do.  He was on the nexavar(3 months) and had radiation((SIRT) two weeks ago.  I guess it didn't work.THis the first my family heard about a small tumor in his duct.  He received the "SPEECH" yesterday about making him as comfortable as possible.  The sad part his doctor has not come down to see him but sent one of the assoicates to speak to him.  It is very upsetting how they can be so cold. They are probably sending him home today with a prescription for pain meds.  That is it.  we thought going to MOunt Sinai and traveling two hours a day to get there would be helpful. I guess not.  Hope your husband is having better results. lolomike Tue, 05 Feb 2008 00:00:00 GMT We have decided to stick with hospice instead of trying the nexavar.  Hospice has been wonderful.  My husband is more comfortable now than he has been since last May when he had his last treatment (chemo embolization).  The oncologist and his staff were never receptive to his pain needs or any of his needs actually.  I have yet to read that anyone is living well on nexavar.  So I'm glad we didn't try it.  I think it would have only added more discomfort.  We are celebrating our 26th anniversary on Valentine's Day.  My sweetheart is well enough to go to the beach with me.  We have reserved an ocean front room with a fireplace.  We're taking lots of chocolate and reading material.  If he were on Nexavar he would probably be fighting new symptoms and I would be running myself ragged trying to figure out how to make him feel better.  Now hospice is helping me every step of the way.  This is a better ending for both of us.   MsDale Wed, 13 Feb 2008 00:00:00 GMT I hope you had a wonderful time for your anniv. My dad is doing much better. His doctor said that the tumour shrunk so the Nexavar did work.  He is back on the Nexavar,  I will keep you updated.  By the way the radiation caused ther inflammation that caused him to become Jaundice.  lolomike Sat, 16 Feb 2008 00:00:00 GMT Hi, I would like to get Nexavar for my Mum, Please can anyone tell me how did they go about getting Nexavar, to get it privately it is very expensive.Any help on how to get Nexavar would be appreciated. ThanksTahir   Tahir100 Wed, 27 Feb 2008 00:00:00 GMT My dad went through his insurance company.  Have your doctor give you a prescription and submit it to your insurance company.  My dad had to wait approx.  one week before he received the ok.  Good Luck.  Has your mom looked into the SIRT radiation.  It really does reduce the size of the tumors.  My prayers are with you.  It is heartbreaking seeing a parent suffer emotionally and physically.  Keep strong!!! lolomike Wed, 27 Feb 2008 00:00:00 GMT My brother died of liver cancer on 2/1/08. He also had Nexavar in Sept 2007. The drug gave him chest pain and pancreatic inflammation as soon as the oncologist increased the dosage. He had to be hospitalized for days and could never eat raw salad since. So be carefull and follow very closely every dose the patient has to take and observe the reaction. I hope our experience would help. Best wishes and good luck! Thue0511 Mon, 03 Mar 2008 00:00:00 GMT I have heard a lot of stories about this drug and how good it is, but very strong. My father has just started taking Nexavar and is in his 3rd week. He is experiencing many of the side effects. His doctors took him off the drug for 4 days and readjusted his nausea meds and put him back on it. The original side effects seem to have subsided, however his fatigue is extreme. He was diagnosed in Oct 2006 with inoperable hepocellular carcinoma. He has gone through 6 chemo embolization treatments and has managed to keep the tumor within his liver. Those treatments were directly into the liver so he never experienced extreme fatigue as most systemic patients do. During his last treatment in Jan 2008 he was told that continued treatments could possibly damage other organs so he was told about the Nexavar drug. We are told the first 4-6 weeks are pure hell with all kinds of side effects. Afterwards the side effects subside and CT scans, etc will determine if the drug is working. While I understand every patient is different can anyone verify this to be true?On 1/20/2008 MsDale wrote:Does anyone have good results from using nexavar for primary liver cancer?  I'm not finding life extensions longer than a few months.  My husband was diagnosed in July of 2005.  Internal radiation (y90) was very helpful, but his liver function has declined so that is no longer an option.  So is there any good news out there about using nexavar?  dinao Mon, 03 Mar 2008 00:00:00 GMT