One patient with glioblastoma still alive nine years later
by Buddyholly04 on Mon Apr 02, 2007 12:00 AM
I come to these message boards seeking information regarding side effects that people have when they've been on Sutent for more than 5 cycles. I am sick of reading message boards that begin with "been on sutent 9 days now, things seem to be going good". It would be nice to have some information from people who are beating the odds.
My mother is the one with MRCC. She found a lump in her breast in May 2006. It turned out to be a lymph node with cancerous kidney cells in it. After a CT scan, it was found that she had a very large tumor on her left kidney. It spread to nearby lymph nodes without invading any other organs except for her other kidney. After removal of her left kidney and all affected lymph nodes, they only cancer left in her body were small lesions on her right kidney. They decided the best method of attack was sutent.
My mother is a very small woman. Normaly weight is 110 pounds and she's only 5'1". She is on the 50mg/day 28 days on then 14 off. Side effects have varied from the beginning. The first cycle she had acne, mouth sores, and slight jaundice. The last cycle was her worst. It actually put her in the hospital. She had pitting edema really bad. She gained 18 pounds of water. She developed high blood pressure, postassium defficiency, severe hand a foot syndrome, extreme fatigue, severe headaches, hypothyroidism, and most recenlty subconjuctival hemorhage.
She isn't able to find anyone in her area on sutent and wanted me to post this information on the message board. Any ifnromation from others who have been on sutent for many cycles would be very helpful.
by Bunker on Tue Apr 03, 2007 12:00 AM
by Frankandcindy on Wed Apr 04, 2007 12:00 AM
Thanks so much for posting your story again. My hubby and I are new to the board and I was so excited to read your story I had to read it out loud to him. (He actually stopped to listen!!)
He was dianosed in his left kidney Nov. 01. Had it removed, considered Stage I. CT every 6 months. After 2 yrs they said tumor on rt adrenal had grown to 4 cm (what tumor we asked??) so rt adrenal was removed Oct. 03. CT every 3 months for next 3 yrs. Graduated to every 6 mos. but didn't make it that long. Symptoms of night sweats, weight loss and fever returned. Found a softball size tumor in his gut attached to his lower stomach, duodenum, part of small intestine, gall bladder and left lobe of his liver. All were removed, including a sliver of his liver in Nov. 06. (A friend of mine told me that is what they did (minus the liver) is the same as her gastric bypass surgery and that he needed to be sure he got 60-65 mg of protein each day. Dr' didn't have ANYTHING to offer when asked about his nutrition needs.) 3 mos later CT revealed tumor in rt. lobe of liver.
He has just finished his first round of Sutent. The first 2 weeks were rough with nausea and fatigue, but once I found some protein bars (30 mg each) both went away and he's been doing great.
His attitude the first 3 surgeries was great, get it out and get on with life. This time having a recurrence so soon took some of the optimism out of him. Your story about Sutent helped to restore that, a LOT. Doesn't hurt either that he is feeling better.
His blood work was ck'd Monday and is good. In May he will go back after his 2nd round is complete and will have another CT. We talked to the surgeon and he said that the liver IS operable, and that radio frequency ablation is also a viable option. I'm hopeful that the Sutent will take care of it instead. He's a great surgery patient and a quick healer, but Lord help me I think I have a harder time with the surgery than he does! :)
I am a firm believer that attitude is half the battle. Frank's been looking at boats on line (again) and I told him that in 2 years it is fine with me. (He bought a bigger boat after the 2nd surgery. Maybe this will be incentive!) The standing joke with our friends is that he plays the cancer card when he wants to go shopping!
Continued good health to you and God Bless you and everyone on the board.
by Bunker on Thu Apr 05, 2007 12:00 AM
Hi Frank and Cindy,
You two have certainly been through a lot but you understand the value of ATTITUDE. It's great that Frank has such a supportive spouse---as do I---and I had to smile when you mentioned who was the better "patient". I told my wife many times that I felt my illness was harder on her as the spouse than it was on me as the patient. You two are angels! A new boat sounds like a good idea. For me, it's RV's. We live in Minnesota, USA and I got ours out last week (81 degrees) and then had to re-winterize it this week (17 degrees). Us RCC participants always knew that life wasn't fair but that's a bit extreme even for my sense of humor. It does keep us focused though to think about something different. We strongly believe in Sutent and wish you two the best. More continued success I'm sure. Please stay in touch and don't hesitate to ask if you have questions.
by Jerkim0421 on Fri Apr 06, 2007 12:00 AM
by Bunker on Fri Apr 06, 2007 12:00 AM
I'm sorry to hear about your father. I have communicated with many others that were given this same prognosis (including the father of a co-worker) and they have extended their life beyond what was imagined utilizing some of the new drug treatments. What type of treatment has your father had or is currently undergoing? There is always hope.
by Marymaz on Mon Apr 09, 2007 12:00 AM
by Recnac on Mon Apr 09, 2007 12:00 AM
by Bugnana on Tue Nov 11, 2008 12:00 AM
On 4/3/2007 Bunker wrote:Hello Buddy Holly. I've posted my story before but it's been quite a while so I'll give you a brief recap and you can ask me any questions that you would like. First, I must warn you---I am a very upbeat person and use humor to get through tough times. I have a very supportive family, especially my wife. She has been with me at every step of this journey. I also want to take one quick exception to what you said before I share my story. You mentioned that you were tired of hearing about success stories with only 9 days of Sutent treatment. I understand your desire to hear longer term success stories but EVERY success with RCC needs to be celebrated!! Now my story: age 47 diagnosed with RCC by accident in 12/04--very lucky. Left kidney removed in 12/04 and considered Stage I. We were told everything was fine and that the cancer was confined to the kidney. We celebrated our good luck. RCC returned in 5/05, this time to my liver---more surgery and now considered Stage IV. Tumors returned to liver on 8/05. Late August, started first treatment cycle of Sutent while still an experimental drug. 50mg/day for 28 days on and 14 days off. Since I was part of the Pfizer trial I was lucky enough to have CT/PET scans after every treatment cycle which gave us some excellent feedback. After my first treatment cycle there was a 35% reduction in tumor size. After my second treatment the tumors were dead (meaning no metabolic activity via the PET scan). I completed cycles 2-6 and went off Sutent on 4/30/06. My doctor has listed me as a complete response to the drug and continues to monitor me. My last sign of a tumor was 2/06. We learned many "tricks" along the way including how to deal with some of the side effects---we can discuss this further if you would like. I attribute our success to many things---a wunderdrug called Sutent; an outstanding and knowledgable kidney cancer specialist; a loving and supportive family--especially a devoted wife; a super-positive attitude; humor; prayer and a lot of luck. I trust that this is the type of information that you were looking for and I hope that things progress well for your mother. Please stay in touch.
How your story uplifted me as a cancer warrior myself. But I am here searching for my beloved cousin who is now on Sutent (almost one year). Yes I agree a wonder----drug. I noted you wrote we learned many "tricks" for the side effects. Would you mind listing some of those. My cousin is the most upbeat wonder woman (retired nun) that I know and I know her attitude and belief give her the lift along with the miracle of this new drug and I pray for a long time this continues to work for her and all others.
She is facing: very sore mouth (done what the doctor told her and the Sutent site recommendations), fatigue, headaches, nausea, ect. if you have anything you have learned to combat these effects please please post them as there are always us newbies.
Stay in good health and be a constant advocant for your cancer.
by Bunker on Fri Nov 14, 2008 12:00 AM
I'm sorry to read about your cousin and her journey with RCC. For the sore mouth part, I did not have this particular side effect to a great degree but I have read from others about a product referred to as the "magic mouthwash". I'll try to find the recipe in my notes but if you google this on the internet I think it will come up. Nausea: my doctor prescribed Compazine which really did wonders for me. I also had a side effect which we called "acid stomach" and my doctor prescribed Protonix. This worked but the trick there is to start Protonix a few days before starting a Sutent cycle to give it a chance to build up in the stomach. The other approach we used with stomach issues was to change when I took Sutent. The original recommendation was to take it at bedtime so that the patient slept through the side effects. However, we discovered that Sutent was also tough on the stomach lining and I started taking it a suppertime so that I had food in my stomach. This helped a lot. Fatigue: my approach with this side effect was to take multiple short rest periods (20-25 minutes) during the day where I would find a dark and quiet place and simply let my mind "go blank". Not really a sleep situation but I found that my mind would really race and this would help settle me down. That was refreshing. There might be other "tricks" that I have forgotten so please don't hesitate to ask. Please tell you cousin to hang in there---she seems to have a great attitude and a fine caregiver in yourself.
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