Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,64271,0.htm Thu, 23 May 2013 00:00:00 GMT Thu, 23 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ thanks B... you too!!! let's fight it together!!! YvonneLim Sun, 22 Apr 2012 00:00:00 GMT all the best.. yes!!! there's many drugs available.. let's stay strong and positive : ) YvonneLim Sun, 22 Apr 2012 00:00:00 GMT Hi Yvonne, I am so glad your mom got a good report! Tell her to stay positive and keep her spirits up.  Keep hope and faith for brighter days ahead. Prayers and blessings, B MamaB Thu, 19 Apr 2012 00:00:00 GMT I have just stopped taking 50mg. Sutent after 3.5 years. During this time it has helped reduce my cancer until it stopped being effective 8 weeks ago. Im now starting a trial using GDC-0980. Feeling weak and fatigue did effect me during the Sutent years, but what a great job it did. i wish him and your family well, and although unpleasant I feel that with his family around him his quality of life is worth the problems and after Sutent there are drugs now that make a longer life not only possible, but probable. I am in the UK and even during this treatment am planning to attend my sone wedding in Cincinatti in August :)   JDCGDC Thu, 19 Apr 2012 00:00:00 GMT hi, my mom was on 2 cycle of sutent (37.5mg 28days on and 14 days off).. the last CT scan showed that generally the kidney tumor and mets to lungs have generally decrease in size or remain stable!!!! sutent works... press on everyone.. yvonne     YvonneLim Wed, 18 Apr 2012 00:00:00 GMT thanks...  and yes, let's stay positive and press on.... yvonne   YvonneLim Sun, 15 Apr 2012 00:00:00 GMT B, thanks for sharing and your encouragement.. yes, we will press on... yvonne   YvonneLim Sun, 15 Apr 2012 00:00:00 GMT My son has eye swelling and they do cause headaches.  He also has had blisters at end of fingers and one sore toe.  But he is hanging in there. myboys2 Sat, 07 Apr 2012 00:00:00 GMT Hi Yvonne, I am sorry your Mom is having problems. Sutent is a very good chemo; although it does have some very uncomfortable side effects.  I suppose it has to be strong to go down and kill the tumors. I was diagnosed with Renal Cell Cancer, Stage IV, with mets to the lungs.  I took Sutent 50 mg for two and a half years before my surgery.  I also had the eye swelling, mostly on my right eye, that is the side I sleep on.  Yes, the hands and feet blisters are very painful.  It is good to keep the feet lubricated with something and to wear socks, day and night. I have been off of all chemo since the month before my surgery; which is a little over two years now.  I have been so blessed. You and your mom need to keep a positive attitude.  Stay strong in mind, body a soul.  Have hope and faith for brighter days ahead. Prayers and Blessings, B MamaB Sat, 07 Apr 2012 00:00:00 GMT hi, my mom is on her 2nd cycle of sutent (37.5mg, 28 days on and 14 days off).. agree, she also has the same side effects.. skin thickening, tear and blisters.. really painful.. any way to relieve the pain? she applys udderly cream at night.. the rest she says are manageable.. so far during the 2 cycles, sometimes her eyes will swell for a few days, looks like eye bags that is filled with fluid.. anyone experienced that.. and a bit of cough? yvonne         YvonneLim Sat, 07 Apr 2012 00:00:00 GMT I have been on Sutent for a tad over 3 years..It has completely abolished my multiple mets and has held me "No Evidence of Disease" (NED) Mean time Progression Free disease is 11.2 months, so I am well ahead of the game. I agree entirely with Truesails.  Hand and Foot Syndrome is the most common side effect with Sutent; as well as the other 2 approved targeted therapies. some cycles ar tougher than others.  This cycle corresponded with spring and allergies...not as fun.  I have missed 2 days of work in 3 years, and that may have well been influenza not Sutent related. Just a heads up.  They recently released the trial results on 37.5 continuous.It was statisticly less effective than 50mg 28/14.  go figure. There are other good drugs out there, as well as some awesome new antibodies in trials.  As far as I'm concerned, if sutent is still working they would have to pry my fingers off the square sutent container. IMHO, any side effect is preferable to assuming room temperature. Pura Vida! RugbyRob Thu, 05 Apr 2012 00:00:00 GMT On Feb 02, 2012 1:30 AM beverlyodom wrote: iIt has been a while since I have been on the website,  my brother is starting his 14th cycle in a couple of weeks and he is now starting to have some real strange things going on.  i am very worryed about.  Hopefully someone out there can help me.  He is having big boils coming out on him, Very painful he says.  They are draining amoung other things, if anyone has experienced please let me know what needs to be done!!  I am on here for my brother and he is in stage 4 RRC we found out Aug 2010.  I have just gotten him moved up here with me in North Carolina, and I am very worryed if his cancer doctor is going to be as good as the one he had in Ga.  He has been doing fairly well on the sutent 50mg and the tumer he had has even gotten smaller in size and places he had on his lungs are even gone.  He has been very lucky not to have many side effects.  I pray for the same for everyone out there.  Of  course he has bad days of where he feels very bad and weak. Looking forward to hear from anyone and keep you faith in God, he has a plan. BeverlyHi Beverly, How are you feeling?  Has the stress let up any?  I sure hope so. How is your brother, did he find out what was causing the boils?  I hope things are going much better for you now. Prayers and blessings, B MamaB Fri, 16 Mar 2012 00:00:00 GMT Hi Beverly, In 2007, I was diagnosed with clear cell RCC, Stage 1V, with mets to both lungs.  I took Sutent 50 mg. for two and a half years before surgery. Since surgery, I have been off of all chemo and tests have been clear.  I go in May for scheduled scans and lab work. I hope you can find a good Oncologist for your brother. I feel the tension and stress you must be under, just from reading your post.  Please try to relax and take care of yourself so that you will be able to be a caregiver to your brother. Wishing all good things to come your way. Prayers and blessings, B MamaB Fri, 02 Mar 2012 00:00:00 GMT The foot problems seem to be a thickening of the skin.  The length of time and the intensity varies each cycle for me. So far I have soaked them followed with a moisture/healing ointment and white cotton socks.   I have started wearing Crocs canvas shoes.  The insert is somewhat cushioned and has a massage effect.  At some point the callous/blisters will start to peel off and the pain lessens.  The foot problems seem to affect all sutent users at one time to every cycle. True D. truesails Wed, 08 Feb 2012 00:00:00 GMT Not sure where in NC you are located.   I am in New Bern.   I have had RCC care with Dr. Daniel George at Duke in Durham.   Also consult with Dr. Wendy Rathmell at UNC in Chapel Hill.   Both specialize in kidney cancer and I was very satisfied with my care.    I am now being treated locally at the New Bern Cancer Center - Dr. Rick Gorman.   Durham and Chapel Hill were 3 hours away and I just wanted to be treate locally.  Hope this helps.    Janet jepco Sat, 04 Feb 2012 00:00:00 GMT Very nice to hear from you,  I knowest you said you had foot problems,  I just found out today that my brother has the blisters on the bottom of his feet.  I am so unset, because we have just got back from the doctor today regarding these boils he has had.  I have been so worryed because I just got him moved to North Carolina with me and he had such GREAT doctors in Ga,  I made him a appt. with my family dr. and didnt realize what a quack he was until he started dealing with my brother,  He seen the places on him today after just the second time seeing him ever,  and went all to pieces didn't even get a chance to ask about my brothers  blood pressure that is out the roof, or no lab work on his sugar and sent him right then to a urologest then this doctor starts cutting on his personals without having any medical history.  I wish we could find a good doctor here for him.  I knowest that you have trouble with blisters, are they are your feet?  What have they done for them?   I am sorry for getting carryed away with everything thing else.  I am just so scared for him.   Like I said before he really has done GREAT on the sutent 50mg with not to many problems I just want to nip it in the butt now and not let it get out of hand, with him having sugar on top of the RCC   beverlyodom Sat, 04 Feb 2012 00:00:00 GMT Just finished my 29th cycle (3.34 yrs.), 4 weeks on 2 off, of 50mg sutent.  Side effects have varied almost with each cycle, the worst being foot problems (blister like pain and thickening of skin).  Prior to starting sutent, I had dental and gum problems for years, knowing this and researching the drug my Dentist, Dr.s and I  decided to have all remaining teeth removed. I do believe I avoided all mouth problems as a result. So far other side effects have been managable. My Dr.s are pro-active about the heart and blood pressure effects and have me on magnesium oxide (3-420mg tabs 3X a day), phosphorous' (2-852 mg tabs 3X a day) and 3 blood pressure meds. My last Doc visit, mag was down to the point I wasn't leaving until I had I.V. of it (concern over heart attack/probs.). truesails Fri, 03 Feb 2012 00:00:00 GMT We have been on Sutent 50mg 2 weeks on 1 off for 6 months.  Cody was just reduced to 37.5 total on.  He had sores on sides of mouth, sensitivity in mouth and had severe eye swelling by a radiation site for a skull met.  Our doctor believes that 37.5 has the same efficacy as 50 mg. Dr. Dutcher is an expert in this field so I have to trust her judgement. Gail mother of Cody 21 myboys2 Thu, 02 Feb 2012 00:00:00 GMT My husband was on sutent 50mgs 4 weeks on 2 weeks off for 19 months. His tumors shrunk and he had a few side effects but they were manageable.  He is now on 37.5 continuously. After a CT scan it showed that the tumors shrunk while he took the sutent and increased slightly when not taking the drug. I found that this can happen by reading the posts on this message board. Many have written in to say that decreasing the dosage to 37.5mgs have made a difference in the side effects. My hunsband's oncologist has said that he would only reduce the dosage if it was necessary - for example bad side effects or continuously taking the drug. We are very grateful that the drug is still working. Talk to your oncologist about reducing the dosage as most people write that the side effects reduce but the drug still works on the tumors.   mrbuck Thu, 02 Feb 2012 00:00:00 GMT iIt has been a while since I have been on the website,  my brother is starting his 14th cycle in a couple of weeks and he is now starting to have some real strange things going on.  i am very worryed about.  Hopefully someone out there can help me.  He is having big boils coming out on him, Very painful he says.  They are draining amoung other things, if anyone has experienced please let me know what needs to be done!!  I am on here for my brother and he is in stage 4 RRC we found out Aug 2010.  I have just gotten him moved up here with me in North Carolina, and I am very worryed if his cancer doctor is going to be as good as the one he had in Ga.  He has been doing fairly well on the sutent 50mg and the tumer he had has even gotten smaller in size and places he had on his lungs are even gone.  He has been very lucky not to have many side effects.  I pray for the same for everyone out there.  Of  course he has bad days of where he feels very bad and weak. Looking forward to hear from anyone and keep you faith in God, he has a plan. Beverly beverlyodom Thu, 02 Feb 2012 00:00:00 GMT