CancerCompass message board discussion started by Lisa w on 11/13/2006 http://www.cancercompass.com/message-board/message/all,7773,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ we will be thinking about you..postive vibes and mojos to ya... Lisa w Mon, 13 Nov 2006 00:00:00 GMT Such excitement and nervious anticipation. Good luck from tropical Minnesota, USA. Bunker Wed, 15 Nov 2006 00:00:00 GMT I have my C-scan on Friday afternoon....this will be the first one since I started Sutent and tomorrow night I finish up with my second cycle. Hardly any side effects this time and I'm really feeling better than I've felt in a long time.....I'm amazing everyone, even my doctor! So for everyone out there who might be feeling a little down, please remember to keep positive and I know from a personal point of view, that Sutent does make a difference! I'll keep you all posted. Thanks again for the encouragement and hope you are both doing good. Willard Willard-nl Wed, 15 Nov 2006 00:00:00 GMT sorry willard thought your scan was on the 14th.. anyway glad to hear you are feeling so well..mel is on day 16 of second round..felt great but last few days he has had a running tummy and now has a sore bum..is it ok to say bum in your neck of the woods?...;.) on meds for that..also has a very sore mouth..and a few aches and pains...doc said second round may have been easier..but mel thinks he feels he has a few more side effects this time...but l am sure things will be better tomorrow...and he says they are not that bad.. Lisa w Wed, 15 Nov 2006 00:00:00 GMT Sorry Lisa but I shoud have fessed up---it was my CT/PET scan that was on the 14th. I just couldn't resist the chance to wish my buddy Willard---good luck. We met with my doctor yesterday and I'm still clear. This will mean a little over 9 months since any sign of a tumor and almost 7 months since I stopped taking Sutent. We call it our early Christmas present and even though I hadn't given Santa (I mean my doctor)my wish list, it was the perfect gift---I think we'll keep it. Willard, I hope this a good sign for your scan today as well. For Mazzy, Lissa, and Lou---hope this news provides encouragement to your loved ones. Bunker Fri, 17 Nov 2006 00:00:00 GMT oops sorry guys had it the wrong way round..what wonderful news bunker..have you any idea what hope you bring to us all..you are pure magic mate...good on ya... Lisa w Fri, 17 Nov 2006 00:00:00 GMT Great news Bunker you must be so pleased. Is your RCC metastatized and if so where else is it? I know you have told us before but I can't remember. The reason I ask is did they shrink as well? You are a real inspiration to all of us and we love to hear good news for a change. Joe goes back on Sutent on Monday if his blood is okay. Here is hoping. Made it 3 weeks on the first cycle and felt quite well other than the creatine going up. So hopefully he will do good on Monday and start again. I read him your note and he was thrilled for you. Talk to you soon. Mary (Merry Christmas early) Mazzy Fri, 17 Nov 2006 00:00:00 GMT Great news Bunker you must be so pleased. Is your RCC metastatized and if so where else is it? I know you have told us before but I can't remember. The reason I ask is did they shrink as well? You are a real inspiration to all of us and we love to hear good news for a change. Joe goes back on Sutent on Monday if his blood is okay. Here is hoping. Made it 3 weeks on the first cycle and felt quite well other than the creatine going up. So hopefully he will do good on Monday and start again. I read him your note and he was thrilled for you. Talk to you soon. Mary (Merry Christmas early) Mazzy Fri, 17 Nov 2006 00:00:00 GMT Good morning Mary (Mazzy)---not sure which you prefer. My RCC started with my left kidney (which was removed) and metastatized to my liver just 5 months later. More surgery to my liver. 3 months later it had returned to my liver in the same area where the surgery had occurred. Then we started on Sutent. After my 1st Sutent treatment cycle we saw a 34% reduction in the size of that tumor. I'm late getting back to you so by now Joe has met with his doctor. I hope he was able to go back on Sutent. 3 weeks out of the 4 week cycle is pretty good. Please keep us posted. Bunker Tue, 21 Nov 2006 00:00:00 GMT Thanks Bunker after I asked the question I did a bit of reading and found out. You have done extremely well and sutent has certainly been a wonder drug for you. Joe is still not back on it yet. He was suppose to start yesterday but the blood came back with the creatine still up so she wants him to stay off for another week so that will put him off 3 weeks. I am going to speak with a Urologist today and ask about the creatine. So it is disappointing as we had hoped he would start yesterday but Oh well we will wait and see. Thanks for asking and talk to you soon. Mary Mazzy Tue, 21 Nov 2006 00:00:00 GMT Mary, please tell Joe to hang in there. I know that he's probably anxious to get back on Sutent but a 3 week interruption is not entirely bad. I'm not sure if I have related this part of my story on the message board before but we "negotiated" a little more off time between Sutent cycles with my doctor. I took a total of 6 cycles. I think the last 3 or so were done with 3 weeks off in between vs. the recommended 2 weeks. For me, it was a matter of allowing more recuperation between hitting the Sutent. The reason I bring this up is to say that Sutent still had amazing results for us even with the longer off periods. It's important to get Joe back on but it's not like he's starting all over. Hope this is helpful. Bunker Tue, 21 Nov 2006 00:00:00 GMT Hi Greg Thank you so much for relating that. I just read it to Joe and he was very pleased to hear that. This board has been amazing and Joe and I thank you for all you have shared. It is from reading messages such as yours and hearing success stories from all of the writers that it gives us to all of us. Joe knows no one in our city that has RCC or is on sutent so he had gotten so much from me reading this to him. (I think I mentioned he HATES the computer and relies on me to read and write for him) You brightened his day as the delay was depressing. We both say thank again. I will surf the net to see if I can find more info on creatine. Talk to you soon Mary & Joe Mazzy Tue, 21 Nov 2006 00:00:00 GMT It's been a few days now since I've chatted with you all....I'm awaiting my C-scan report next Thursday and right now am in my two week holding pattern without taking the Sutent. I'm doing really wonderful and back to work everyday. I never would have imagined it back last summer that I'd feel so good now, but Sutent is really making quite a difference. Hey Bunker, I'm so happy to hear of your good news buddy (as we say down east) and you are a true testimonial for those who think there is no hope. You have given me lots of encouragement and I am very grateful for that. Mazzy, has Joe started his second round of Sutent? Fill me in with all the details and tell him not to worry as I suppose they were being very particular with his blood during his first cycle. My doctor only checks mine every 6 wks, so hopefully things are ok. I really should go to my family doctor to have it checked, but I'm so tired of appts. Lissa, hope your husband is doing good also...I believe this is his first cycle of Sutent. Let me know how things are going. My stomach was really bothersome during my first cycle, but now after finishing my second, I have not had any effects worth talking about. Seems it's getting easier each time. Well the weather here suddenly got colder over the past couple of days and we're settling in for the winter months ahead. Take care now everyone and keep in touch. Willard Willard Wed, 22 Nov 2006 00:00:00 GMT Ha Big Guy glad to hear all is well. WOOHOO cycle 2 down. Can't wait to hear how you make out with your scan. Glad to hear you are keeping busy but don't tire yourself out. NO Joe is not back on sutent yet. 3 weeks off darn. Creatine still up. He has bloods Monday again (Nov 27) and they will check again and he should know by Tuesday. Here is hoping. He is a little down about it but keeps hoping. The weather is cold as heck here too but we Maritimers know what cold weather is all about. Keep us posted and we will be thinking about you with positive thoughts. Talk to you soon. Mary & Joe. Mazzy Thu, 23 Nov 2006 00:00:00 GMT "Back to work and doing wonderful"----you have such a GREAT attitude. It makes me want to jump in the RV and head up your way to shake your hand---O.K. maybe I'm a bit excited and I forgot about winter. Maybe in the Spring. Good luck with your scan this week. I'm sure I can speak for the group when I say that we will all fire up our computers this weekend to read your great news. Good luck buddy (yes, we use that term in Minnesota, USA as well). Bunker Mon, 27 Nov 2006 00:00:00 GMT glad to hear you are feeling great willard..not long now before you know the results of scan..mucho mojo's flying your way mate[as we say down under] (:)mel is on last day of second cycle...tomorrow he has 2 weeks of pill and on 5th december has his first scan...a bit more tummy trouble this time and mouth a bit sore..but he is great and looking well... mazzy how are you and hubby...you are in my thoughts...l think of you all when l take the dogs to beach...l remember the day l found you all here...made such a diffrence..it is a hard road we all walk down... l look at my husband working in garden he looks really good ..cannot believe that there is something inside him that could take him away...enough of that ...must stay positive..just sometimes l have a really bad day...big hugs to all... Lisa w Mon, 27 Nov 2006 00:00:00 GMT has everyone left this page???? Lisa w Wed, 29 Nov 2006 00:00:00 GMT has everyone left this page ???? Lisa w Wed, 29 Nov 2006 00:00:00 GMT Bunker's still around. Bunker Wed, 29 Nov 2006 00:00:00 GMT lol, good to know bunker....thought l was talking to myself...(:)) Lisa w Wed, 29 Nov 2006 00:00:00 GMT I do that all the time (talk to myself). The upside to that is that my wife let's me win those arguements. Enjoy your day!! Bunker Thu, 30 Nov 2006 00:00:00 GMT Ha Lisa we are all still around but jump to different discussions. I keep starting one when my husband is off sutent and of course now that he is back on. So we are hoping to complete a cycle this time. He stopped after 3 weeks into the first cycle and then was kept off for 3 weeks because of elevated blood levels. So as of Nov 28 he started again so I guess we say he is on cycle 2. Let us know how hubby makes out with the CT Scan. We are patiently waiting to hear from Willard and found out how he did today. Keep in touch and surf around if you can't find us. Talk to you soon. Mazzy Marymaz Thu, 30 Nov 2006 00:00:00 GMT My mother 57 was diagnosed with RCC in 9/04. She had a radical nephrectomy for her right kidney. Then in 01/05 she had two VATS (video assisted thoracic surgery) for both left and right lungs due to the discovery of nodules which were also RCC. Next this passed summer 6/06 she went through 10 sessions of radiation on her 3rd and 4th spinal cord due to the spread of the tumor and was experiencing great pain from nerve impinchments. The radiation was a failure and the Docs decided to operate on her from the neurology department to insert 4 screws and two rods to stabilize her neck (surgery was not preformed to remove any tumor due to the fact that it was located around a dense area of nerves). From then till now her condition has stabilized and her oncologist DR. Peter Wiernik from Our Lady of Mercy Hospital in NYC had decided to try out Sutent. Her first cycle started on 9/06 and now she is on her 2nd cycle ending by 12/6/06. So most likely she will receive a ct scan and her results before Christmas. I am praying for good results and also for all of you out there who are taking this drug. May God bless and we ask all this in the name of his son Jesus Christ amen. Cathy Dangerkitty214 Fri, 01 Dec 2006 00:00:00 GMT Those you who take Sutent what were some of your side effects? On my mother's first cycle her face was swollen, slight skin discoloration, minor rashes, and minimal sores in mouth, taste distortion, lowered white blood counts to like 1100 and fatigue. On her second cycle her white blood count was fine 4000 count, her hair began to turn a bit white, taste distortion, swollen face, but also pain on her upper shoulders and neck. She has a follow-up appointment today 12/1/06. Her first scan will probably take place after her second cycle ends (12/6/06) Keep us in prayers (the Lord's mercy of healing is all to it) and I will also pray for all you fighters of RCC out there. Hope that we can all have a Merry Christmas. Dangerkitty214 Fri, 01 Dec 2006 00:00:00 GMT welcome cathy...thanks for posting here...looks like our little group is growing..l find it a great support to hear from others..you and your mum are in our prayers for sure... my husband has had a few side effects..loss of taste sore mouth runny tummy...dry skin...but nothing really bad.. keep in touch and let us know how you both are going.. Lisa w Fri, 01 Dec 2006 00:00:00 GMT I ask for prayers for my mom as of this Friday 12/8/06 she is scheduled for a cat scan for her neck,adominals, pelvis, and chest. She will be ending her 2nd round of Sutent tomorrow 12/6/06. So the results of this scan will tell us whether or not Sutent has helped. I ask about the PET scan but the Dr said its hard to spot kidney cancer with it and plus her perivous scans were CT so they would another ct scan to be consistant to inorder to compare the results of pre and post Sutent.Hopefully it will be good news that I would be posting next time. Dangerkitty214 Tue, 05 Dec 2006 00:00:00 GMT lots of prayers and positive vibes coming your way cathy....hang in there both of you... Lisa w Thu, 07 Dec 2006 00:00:00 GMT