CancerCompass message board discussion started by Nevei on 7/28/2007 http://www.cancercompass.com/message-board/message/all,14788,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My brother was diagnosed this year with soft part tissue sarcoma. He has a tumour in the back of his knee, he has numerous nodules on his lungs and a 2cm tumour in the brain.  He tried Avastin, chemo, radiotheraphy but to no avail.  The leg and brain tumours haven't got any bigger but there are more nodules on the lungs.  They are now going to try Sutant and see will that work.  Since this is quite a rare cancer and not that many people in Ireland have it I was wondering is there anyone out there with the same symptoms and what if anything is working for them. Nevei Sat, 28 Jul 2007 00:00:00 GMT My husband has been battling osteosarcoma for about 3 years.  He too has numerous tumors in his lungs and he had a large one on his chest.  He recently had cyberknife to remove the one on his chest.  It isn't a cure for the cancer but it may be an option for your brother for the ones one his leg and brain.  It's a great procedure and noninvasive.  They have centers all over.  Just a thought.  Good luck to you.  Sondra Sondra Thu, 09 Aug 2007 00:00:00 GMT Sondra,Many thanks, any thoughts or ideas are worth following up.  I have found a few sites on cyberknife and will check them out and then pass the details on to my brother.  I wish you and your husband all the very best.  Take care and thank you. Neve. Nevei Mon, 13 Aug 2007 00:00:00 GMT My husband was 35 when he was diagnosed with Sarcoma, he had a 12cm tumor in his stomach wrapped around his vena cava artery. The first 3 months of chemo didn't work at all and the tumor grew to 18cm. In January of 2007 the doctor put him on Gleevic, 400mg and the tumor shrank down to 8cm over 7 months. We were disappointed to find out in June that the Gleevec had stopped working and the tumor is now about 10cm big. We are about to try Sutent if we can get it covered by insurance or if we are granted through the hardship program with the supplier. Gleevec worked for a few months for my husband, it may be an option for your brother. Good luck and God Bless. lookingforhope Tue, 14 Aug 2007 00:00:00 GMT Check into a newer drug, Yondelis. J&J is involved with it.  I''ve talked to some sarcoma patients who havehad some luck with it. God bless.  Kettl Thu, 16 Aug 2007 00:00:00 GMT Thank you for replying, it is such a hard time and its great to know that there is support out there.  My brother has been on sutent for the last 3 weeks and to be honest up to today he has never been better, he is a different person, he is starting to live again.  He had a seizure this evening which brings reality back into the situation.  He overdid it today because of how good he has been feeling, but thank God he didn't need to go to hospital and he fought it well (I pray tonight that the phone doesn't ring).  So I don't know if it is the sutent or the miralce we have been praying ,but he has a renewed life at the minute which I thank God for. I hope your husband gets to try the sutent and maybe you too will see a change for the better, who knows how long it will last but it gives us all a glimmer of hope.  So I pray you will get a glimmer of this hope too.Take care and God bless to you and your husband. Nevei Sun, 19 Aug 2007 00:00:00 GMT Thank you I will pass this on, but for the minute sutent is there and seems to be working, but I will keep it in mind and will try everything.Thank you. Nevei Sun, 19 Aug 2007 00:00:00 GMT Is sutent mainly used for gist tumors? yavall Fri, 14 Sep 2007 00:00:00 GMT To be honest I am not sure, as I said previously he has tumours in his brain, lungs and leg.  His oncologist is trying everything she can and please God this will help. He had an MRI scan Friday 14th so we are waiting for the results of that, hopefully Wed.  But he is feeling so good, so very good.  He feels well in himself and he is doing great.  I will put a message up on Wed /Thurs when we know more.  But I'm hoping the news is good because he is doing really good. Nevei Sun, 16 Sep 2007 00:00:00 GMT Im glad your brother is feeling good. I hope his scan comes out good. I will be looking for your message. I will be praying that things go well. yavall Sun, 16 Sep 2007 00:00:00 GMT My husband also has Sarcoma (MFH) that has spread from his leg to his lungs and brain.   Do you know which type of Sarcoma your brother has?I have been trying to get my husband into a trial for Sutent, here in the US, but have been told that he is ineligible because of the brain mets.  I was also told that the side effects of Sutent are pretty severe, but it sounds like your brother is tolerating them fairly well.   It is always nice to hear of someone who is feeling good through their treatment.I am so glad to hear that your brother is doing well on it....I hope that he continues to do so.  Just remember, each day that it continues to work brings him one day closer to the discovery of a better drug or maybe even a cure!  Best wishes to you and your brother and please keep posting on his progress.    Brenda Kay Mon, 17 Sep 2007 00:00:00 GMT Hi Brenda,My brother was diagnosed with "alveolar soft part sarcoma".  He got good news today the tumour in his brain has reduced, some of the mets on his lungs have also reduced, there is no change to his leg but overall they are very happy with him and we are thrilled.  He has no major side effects, just very tired and very hot in himself.  When he had his biopsy on his leg they removed a sample of the tumour, he was left with a wound that kept oozing and just didn't heal, now it has healed, which is also very good.When I first started looking at this site I read up on sutent and I read many stories good and bad and thankfully so far his story is a good one.  I pray every day for good news and I thank God that today we got some and hopefully we will many more years of good news.I hope that you too get the good news you deserve and I wish you and your husband the very best.I will keep writing on his progress and please keep me updated on your husbands.Take care,  Niamh.  Nevei Wed, 19 Sep 2007 00:00:00 GMT Hi Niamh, Thank you so much for getting back to me.  I am so happy to hear that your brother is doing well.   Keep up the good work! My husband and I met with the dr. last week.  He suggested that we try a different chemotherapy drug (Temodar) that has worked on the brain, however, it rarely does with Sarcoma.   The dr. said that he may consider Sutent on a "compassionate use" basis if the chemotherapy drug does not work.Please do keep in touch and let me know about your brother's progress....I wish him the best of luck. God Bless, Brenda Brenda Kay Sun, 30 Sep 2007 00:00:00 GMT I will be praying for your brother's scans to be good as well! May the new chemo drug be a MIRACLE! -Angie angier Wed, 24 Oct 2007 00:00:00 GMT My brother thank God is doing very well at the minute, he is on 37.5mg of sutent (one and a half tablets) once a day. He is due to have another scan end of November early December. The only side effects he gets is over whelming tiredness and a intolerance to heat, he hates the heat, loves the cold air on him. The tumour on his leg has been giving him some problems lately, it is really hot when you touch it compared to the rest of his body, it was causing him some pain too but he went on an antibiotic and it helped, the doctor thought he had an infection. Overall Colm thinks and feels that something is happening, ie the treatment is working and I keep praying that it is. Nevei Tue, 06 Nov 2007 00:00:00 GMT I continue to hope your brother's scan show good news!! Keep us posted. I am praying. -Angie angier Sat, 01 Dec 2007 00:00:00 GMT My brother had a stroke a week today.  He had a scan on Wednesday, met his oncologist on Friday and all was pretty well, no real change to his tumors, or so we thought, we have since learned that there may be one or two more on his lungs.  He was feeling so well for the last month or so, enjoying life and really feeling that the treatment was working.  But on the Saturday he had a major bleed in the brain, it was totally out of the blue and it was very scary for him and us. Thankfully he is making a recovery, he is paralysed on his left side, but he is gradually getting his feeling back and his speech is alot better.  We were told that the sutent caused the bleed. It has been a very week and hopefully it will get better and with the help of  God he will continue to fight this disease and now this stroke. Nevei Sat, 01 Dec 2007 00:00:00 GMT Dear Nevei, I will be praying for your brother that he recovers completely from the stroke and that his body continues to respond to medication. Our 10 year old daughter has alveolar soft part sarcoma involving her female tract. We started Sutent in mid-July. Because part of the tumor can be felt, we have seen that it periodically gets warm and swells and then recedes when it seems Sutent is having its effect. I will pray that some of your brother's stroke symptoms are due to this effect and that he may be able to recover completely from his paralysis. In our daughter's case, there's a possibility it may be confined to her female tract, so surgeons want to resect it in January. She will have completed 4 cycles of Sutent by that time and we are praying that it may shrink to make the resection easier. There are two other resources for alveolar soft part sarcoma that may be helpful to you: cureasps.org and www.alveolarspsarcoma.net Fernette    Fernette Mon, 03 Dec 2007 00:00:00 GMT Sorry for not logging on in ages but it has been a long hard month. As per my last message my brother had a stroke in early December.  thankfully he has his speech back and is in terrific form.  He has had 2 bllod transfusions with 4 units of blood in total. His treatment has been stopped indefinitely.  Unfortunatley he is paralyed on the left and presently little feelings are there, you can touch his toes and he can feel it.  Hopefully it can only get better.  He is such a brave person, he is now aiming for the Special Olympics, he is a fighter and he keeps us fighting with him. I hope all is well with you.Niamh.  Nevei Wed, 09 Jan 2008 00:00:00 GMT Hi.  I am sorry I didn't get back sooner.  I have not been checking my email as my husband passed away on January 1st.  He kept fighting until the very end though and I am so proud of his bravery.   I know that some day they are going to find a cure for this terrible, terrible disease, so please tell your brother to keep fighting and to not give up.  I really wish the best for  him and will be praying for him. Please keep in touch. Brenda Kay Mon, 14 Jan 2008 00:00:00 GMT My dear brother passed away on Sunday morning May 11th.  I miss him so much, he was a kind hearted gentle person who did no wrong and did not deserve this horrible disease. He has left behind a devastated family, a young wife and a year old baby. But we all love him still and he will never be forgotten. I pray that someday soon a cure will be found for this disease.  This disease has taken my father at 42 and now my brother, 30 years later, at 41...........  how can there be no cure in 30 years, with science and medicine and the amount of money in research. I pray that a cure will be found before my 11 year old son reaches his forties.Good luck to each and everyone who is hit by this terrible disease. Take care, Neve.   Nevei Wed, 13 Aug 2008 00:00:00 GMT