Our online sarcoma forum offers helpful information and resources about cancer treatment, research, and more. Join CancerCompass.com today to learn more. http://www.cancercompass.com/message-board/cancers/sarcoma/1,0,119,65.htm Sun, 22 Nov 2009 00:00:00 GMT Sun, 22 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ We finally got my wife's second set of scans, which showed no new tumors. That's great. However, we were told that the pain she feels in her thigh (the same thigh where her tumor had been) that first appeared in January 2009 is the result of the radiation treatments she began in June 2009. I sat in the office while my wife explained the descrepency numerous times to deaf ears. The bottom line is that they don't know what is causing her pain and they have settled on inaction. Come back in three moths is the best they are willing to offer. We have been seen by doctors at Rush University Medical Center in Chicago. Her surgeon is supposedly one the the best in the midwest. We are greatly frustrated by the news. Her first tumor was only 1.5 cm and we feel that she has a good chance of survival if only she could receive the right treatment. Does anyone have any good suggestions on where to go? What about Anderson in Texas? Thanks. http://www.cancercompass.com/message-board/message/all,41664,0.htm Radish Fri, 20 Nov 2009 00:00:00 GMT I spent weeks going back and forth between my wife's oncologist, her primary care physician, and various treatment providers. Because she was dropped from our network, her oncologist told me that my wife had to go back to her primary care doctor, who told me that she would have to make the appointment to come in first. Her radiologist told her to wait six months for follow up scans while her oncologist told me three months. Finally, after numerous phone calls and faxes, her oncologist relented and wrote the order. We have already been charged $25,000 by Blue Cross Blue Shield and we start from 0 on January 1st, so it's good that we had the tests done this month. The results were less clear. The MIR showed that there wasmn't any spread. Yea! Yet she still has a lump in her left buttock that her surgon told her not to worry about. She also has a painful area on her inner thing. Suposedly neither are due to cancer, but seeing as it took 13 years for her sarcoma (13 years of unexplained pain in her thigh) we are greatly concerned. Her sarcoma team is meeting today and we have an appointment with her surgon next Monday. We are going to demand that the lump be taken out. I was able to get her the much needed tests through persistance. I plan to do the same with follow up surgery. http://www.cancercompass.com/message-board/message/all,41629,0.htm Radish Wed, 18 Nov 2009 00:00:00 GMT This is a difficult time for me and if anyone  has some insights to dealing with the loss of a mother, I would appreciate hearing from you. My mother was officially diagnosed with an Extraskeletal Osteosarcoma in Decmber of 2008. She had been misdiagnosed from August 08 until December 08 as just having a hematoma. By the time they discovered what it was and removed the tumor, it weighed 4lbs and was the size of a football. She underwent major recontructive surgery due to the location of the tumor in her upper inner left thigh. By March it metastisized to her lungs and to her groin. She tried three different types of chemo and then was told the only other option was Sutent, but due to her physical condition, it was highly unrecommended. I moved her into my home on Saturday, September 26, 2009 and took my 16 month old out of daycare to care for both of them. She decided on Tueday, October 6th to forego starting Sutent and entered in-home hospice  care the next day. Her decline went very fast, every day was 100 times worse and she died that Sunday, October 11th in my home at 11:20pm. I am just now starting to really feel this and it's hitting me hard. I have never missed someone so  much before. She was my hero, my mom, and in many ways a soul mate. Any advice would be great. http://www.cancercompass.com/message-board/message/all,41426,0.htm Jennfier3408 Tue, 10 Nov 2009 00:00:00 GMT My wife Cind Has just been diagnosed with Leiomyosarcoma. She has been dealing with some leg pain for a couple months,so we went to the doctor about 1 1/2 months ago,and they sent her to physical therapy. Well she went a few times,and it wasnt getting better so we consulted another doctor,and they did a MRI and found a mass in her pelvis. They assured us that it was probably nothing and sent us home saying they were gonna perform a fine needle asperate biopsy of the tissue. Well we had the biopsy done and waited for results. Two nites later,before we had the biopsy results,she woke up in the middle of the night short of breath and wheezing. She went to the ER and had a chest X-RAY. The results were shocking. She has sooo many tumors in her lungs,they cant count them all. She was admitted immediatley to the hospital and started radiation immediately on a tumor in her bronchial tube. She had 5 treatments of radiation,and went through 48hours of continuous Chemo with adryomyocin,and DITC chemo drugs. Well she is breathing better now,and she hasent shown ANY side effects of chemo.NONE !! She has coughed up several blood clots in the mornings,and gets stronger everyday.Am I fooling myself to think that this is working? She needs to go back to the hospital on November 18th for another 48 hour continuous drip of chemo. If there is anyone out there that can help me please let me know what you think?         Thanks in advance,          Troy http://www.cancercompass.com/message-board/message/all,41306,0.htm tfrey19 Fri, 06 Nov 2009 00:00:00 GMT My wife Cind Has just been diagnosed with Leiomyosarcoma. She has been dealing with some leg pain for a couple months,so we went to the doctor about 1 1/2 months ago,and they sent her to physical therapy. Well she went a few times,and it wasnt getting better so we consulted another doctor,and they did a MRI and found a mass in her pelvis. They assured us that it was probably nothing and sent us home saying they were gonna perform a fine needle asperate biopsy of the tissue. Well we had the biopsy done and waited for results. Two nites later,before we had the biopsy results,she woke up in the middle of the night short of breath and wheezing. She went to the ER and had a chest X-RAY. The results were shocking. She has sooo many tumors in her lungs,they cant count them all. She was admitted immediatley to the hospital and started radiation immediately on a tumor in her bronchial tube. She had 5 treatments of radiation,and went through 48hours of continuous Chemo with adryomyocin,and DITC chemo drugs. Well she is breathing better now,and she hasent shown ANY side effects of chemo.NONE !! She has coughed up several blood clots in the mornings,and gets stronger everyday.Am I fooling myself to think that this is working? She needs to go back to the hospital on November 18th for another 48 hour continuous drip of chemo. If there is anyone out there that can help me please let me know what you think?         Thanks in advance,          Troy http://www.cancercompass.com/message-board/message/all,41305,0.htm tfrey19 Fri, 06 Nov 2009 00:00:00 GMT My 71 year old brother found a spot on his scalp in early June 2009.  It was diagnosed as angiosarcoma.  He had surgery to remove a 5" diameter circle (pretty much the top of his scalp) removed.  By the time of the surgery the cancer had spread to his parotid gland and lymph in the neck.  Next his lung collapsed and the cancer is present in his lungs.  He had 5 mega doses of radiation on his head and neck then started Taxol.  The cancer has continued to grow in his lungs so they changed the chemo to d.... I can't remember the name but it didn't work either.  The doctor recommended he participate in a study at Northwestern Memorial Hospital in Chicago using Avastin.  He will be starting that next week.  Any information on experiences with angiosarcoma would be greatly appreciated.  This has all happened so quickly.  He has no other medical problems. Thank you. http://www.cancercompass.com/message-board/message/all,41260,0.htm kelee422 Wed, 04 Nov 2009 00:00:00 GMT Has anyone had any experience at MD anderson  with this. My very good friend has just been told she has this and I am looking for some information- anything. she has been referred to MD Anderson and will hopefully be going soon. Thank you for any help. http://www.cancercompass.com/message-board/message/all,41240,0.htm josephine32 Tue, 03 Nov 2009 00:00:00 GMT My husband was diagnoised with leiomyosarcoma in April of this year.  He is currently in denial.  A nodule in his leg was removed, and a biopsy was done, and after two opinions from the lab reports, both confirmed it was leiomyosarcoma.  After a CT scan in May, they also found a mass on his adrenal gland, and will be going to see his cancer doctor, November 3rd.  In addition, he has just been diagnoised with diabetes, and metabollic syndrome, from his primary doctor.  At this point, I just need some information on this cancer, and anyone out there who has it, and may have gone through a period of denial.  I don't even mention the word cancer, and my husband gets very upset, stating that they got everything when they took out the nodule.  The fact is, the nodule on his leg, that was removed was found to be malignant.  THanks, in advance for any support. Mustangsally             http://www.cancercompass.com/message-board/message/all,41163,0.htm mustangsally72 Sat, 31 Oct 2009 00:00:00 GMT My wife has Stage 4 retroperitoneal sarcoma with metastasis to her lungs. She as undegone surger, radiation and now is undergoing chemo. The Oncologist has stated each time we see him that the chemo is shrinking the primary tumor and the cancer sites in her lungs are VERY small. She is very weak and failing to bounce back after her chemo sessions, but is able toeat a little after a week following the chemo. We have met with the Radiologist and reviewed the CT scans. His opinion is that the chemo is NOT working. We are at a loss as to how to address this with her Oncologist. He and his staff do everything to avoid a direct answer. I ahve great reservations to asking the Oncologist directly about a prognosis as my wife is intelligent and does nto seem to want to ask this question. Ideas? Should I try to get a face-to-face with the Dr and bluntly ask (after all he iw working for us!) I have made a promise to my wife that I will not hide andything from her. http://www.cancercompass.com/message-board/message/all,41145,0.htm Travelor Fri, 30 Oct 2009 00:00:00 GMT My daughter has colon cancer with mets to liver and lungs. She is nearing the end of the chemo treatment and is doing very well physically. Her attitude is good and she is very positive....is on the budwig diet and takes other supplements to boost her immune system. As her mother I have a huge problem which is her oh so selfish husband and son. They seem to do everything they can to make her life as stressful as they can. Her husband is very moody, selfish and whining...moans about having to go to work, moans about money, about meals, weather, the kids etc etc. Her son is 17 and does nothing to help her,he won't get up for school, can't get a job, won't help around the house, argues all of the time. I stay with her to help when she has the chemo treatments and it hurts me to see how they behave.  I won't butt in as it could make matters worse. I don't know what to do to try and make them understand that she is very unwell and needs support rather than the stress they put on her. I want to wrap her up and bring her home with me and take care of her. This is very hard for me as her Mum. I feel as though I hate them for what they are doing to my lovely girl, it's bad enough she has this evil dis ease without having to endure the wretchedness of her husband and son.   Any advice would be appreciated. Clarabelle   http://www.cancercompass.com/message-board/message/all,40950,0.htm Clarabelle Fri, 23 Oct 2009 00:00:00 GMT My wife is the one with cancer, but I'm the one who's a mess. I take anti-depressants and hold myself together at home, but I struggle to keep a straight face at work and often can't sleep. I have taken on much more responsibility at home and am glad for it, but I have trouble talking with her about our future. She is a strong woman and has focused on life without cancer, but I wake up each day completely heartbroken. I need to be stronger for her sake and don't know how. I just love her so much. Please help. http://www.cancercompass.com/message-board/message/all,40948,0.htm Radish Fri, 23 Oct 2009 00:00:00 GMT Does anyone know of any sarcoma specialists in the San Francisco Bay Area?  My dad was diagnosed with leiomyosarcoma in July.  He is receiving taxotere and gemzar chemo treatments and the chemo is decreasing the size of tumors.  We feel we need a second opinion at this point on how to find a good balance of chemo and maybe remission.Thanks http://www.cancercompass.com/message-board/message/all,40805,0.htm LisaCor Sun, 18 Oct 2009 00:00:00 GMT has anyone tried out Dendritic Cell Therapy for Retroperitoneal Liposarcoma or for any other Sarcoma? ould like to know experiences.My wife has Unresectable RPL and we are running out of options. Doxil did not work http://www.cancercompass.com/message-board/message/all,40773,0.htm pkclipo Sat, 17 Oct 2009 00:00:00 GMT Hi, My dad, 56 years of age,  was diagnosed with hi-grade sarcoma on his left thigh . Luckily it hasnt metastisized yet and the doctor said because of the size of the mass on his thigh the best treatment would be  surgery . now is it required to go for for radiotherapy to avoid any recurrence ?and how to do a routine check up /tests is required for this ? Any comment would be greatly appreciated.  Thanks in Advance. Regards, Pavan D.  http://www.cancercompass.com/message-board/message/all,40745,0.htm Pavan08 Fri, 16 Oct 2009 00:00:00 GMT Greetings:Has anyone experienced dizziness and loss of balnce while walking. I have sarcome cancer and have a dose of radiation treatments ending this past April.  Lionel http://www.cancercompass.com/message-board/message/all,40706,0.htm aznative Thu, 15 Oct 2009 00:00:00 GMT i have been diagnosed with AS. pet and ct scans are clear. surgery is on for the 21. surgeon is confident she can remove it all with good margins. simple mastectomy. now the question is chemo. dr. mentioned taxotere and adriamycin. any thoughts on these drugs. sure could use some info. http://www.cancercompass.com/message-board/message/all,40715,0.htm worriedny Thu, 15 Oct 2009 00:00:00 GMT Hi there! Is anyone here currently in the Brivanib trial at MSK? My sister's doctor at Dana Farber wants her to look into this. I appreciate any help/information that you can give. She has primary anagiosarcoma of the breast that metastisized (sp)to the lungs, sternum, and ovary. She has had radiation for the lungs/sternum and is currently on doxil. Thanks! Lisa http://www.cancercompass.com/message-board/message/all,40717,0.htm lisalisa08 Thu, 15 Oct 2009 00:00:00 GMT Hi Again!  I have heard many praises for Sutent with regards to Sarcoma - Does anyone on the board have any experience taking Sutent?  Thanks!  Lisa http://www.cancercompass.com/message-board/message/all,40719,0.htm lisalisa08 Thu, 15 Oct 2009 00:00:00 GMT Husband has right thigh sarcoma.I need some advice, i thought i was doing this somewhat right, and as i posted in my first message.. he is 43 me 35 and we have 3 teenagers 13,16,18 and a toddler shes 3. the three teenagers are from my first marriage, only the 3 yr old is ours. we have been together for 5 years.he is being treated at roswell park cancer institute, 1/2 hour away from us.. which i used to work at. he has gone through his 30 days m-f of radiation and is now waiting for his surgery date of oct.20th. i have no idea what i am in for when he goes for surgery... i drive him everywhere , the pain pills wont let him drive anymore, but he still has worked everyday through radiation and even still, up to the day before surgery, he is worried we will loose our home, since i am disabled and stay at home mom, so he is the only bread winner. everyday he works from 6am til 330pm i drive him to and from then we would head to roswell for radiaton 4pm and back home and he sweats like a pig and wont eat and he has lost 20 lbs since aug. if not more, he gets mad when i tell him to eat cause he is so nauseated. yet i seem to piss him off about telling him to eat. etc.. he snaps at me for the littlest things,or if i mention doing anything that he cant do, not that i do it on purpose, i am just trying to make sure he dont forget how to live through this. i am trying to help him but feel like i am not at all. i am so scared to live without him, how do i raise 4 daughters care for and pay for a home and his jeep plus my vue.. not to mention i am really mad at his sisters and mother, they havent done a damn thing to help him or us through this, they live one hour away. i am even asked them to make dinners i could freeze since its so hard to do meals, not a damn thing. people say accept help well i am begging for help and yet nobody does a damn thing for us, hell they dont even call and check on him. nothing. how do i deal with that, do i go off on them... he is sensitive now so i cant really yell at his mom and sister now can i.  i miss our life. i miss taking our dog for a walk or daughter for a walk. i miss so much and i dont know how to keep doing things so we dont sit and look at a fat leg full of nasty cancer. any advice would sure help. april  http://www.cancercompass.com/message-board/message/all,40356,0.htm RockCrawler Sat, 03 Oct 2009 00:00:00 GMT My mom was recently diagnosed with sarcoma and we have been researching IPT and DMSO. We are talking about taking her to a treatment center that offers this treatment. Is there anyone who has had success with this treatment? Thanks,Sarah http://www.cancercompass.com/message-board/message/all,40305,0.htm sarahdew28 Thu, 01 Oct 2009 00:00:00 GMT Im a 37 yr old female and ive been diagnosied with angiosarcoma. I was born with what was supposedly was a strawberry birthmark on my right buttocks. As I got older the "birthmark" was not strawberry in color but was the same color as my skin but looked like I had been severly burned.  Ive never had any problems with it up until this past Feb I noticed that it was raised and swollen but no pain. In the mean time I also hurt my back and was apply a heating pad to my lower back and this brought the "birthmark" to a head. I went the the emergency room because it busted open and was bleeding severly. I was then put into the hosptial for 8 days and was told that it was "AVM" but was told by Doctors that they did not know how to treat it. I was then sent to a major hospital and found a plastic surgeon to operate. When the doctor took the mass out it came back as an angiosarcoma. He also went back in and took some more tissue and buttocks muscle out and that came back negative.  Ive since then been to an oncologist and he has told me how rare the cancer is and he had to consult with other doctors in the area to decide what type of treatment to give me. The treatment that he as subscribe for me is chemo with radiation. The chemo treatment that I will be going through is for breast cancer patients. I guess im hoping that someone will read this posting and maybe know someone who has went through this type of cancer and maybe know a specialist that can treat me http://www.cancercompass.com/message-board/message/all,40261,0.htm volfan Tue, 29 Sep 2009 00:00:00 GMT I am looking for a response from Tre at trehouse60.  I read the response to the posting by Kathy regarding "hypermetabolic."  It was very helpful to me.  My 67 year old mother was diagnosed with LMS in July 2009.  Stage 1, High reoccurrence rate. She had a hysterectomy in July, and started chemo treatment on Sept 15th.  She reacted with all the side effects described for Taxotere/Gemzar.  Her second round of treatment, she was not able to start-up because her blood count was very low.  My concern is her Pet-Scan results came back and this is the conclusion:  Hypermetabolic suprapacreatic and retroduodenal lymphadenopathy suspicious for metastasis.  Well, you have to know that word mestastasis kind of put a scare in me for a moment.  However, the oncologist said it was inflammation because of the recent surgery she has just had and he would monitor the site during chemo treatments.  I jsut want to know if this is all proper protocol.  I like the Doctor but I don't want him keeping anything from me, I want to know the truth if he knows more and is not sharing it.  What can anyone tell me.          http://www.cancercompass.com/message-board/message/all,40064,0.htm Dominga Wed, 23 Sep 2009 00:00:00 GMT in 1997-1998 i found a mass on my left thigh pretty big and in my right angle, i went to the doctor and i told her was i felt on my body, her reaction was 'that you got what how do you know' my answer was because this is my body and i know the diference and i could feel it. she check and did some exams and she told me yes you got a mass and is cancer you got a liposarcoma, i was in shock because tha doctor said like nothing ,like' yea you just cancer 'the first thing on my main was, i'm going to died and i got 7 kids what i'm going to do know. i don't know how i got to my friends house, i was quiet i couldn't talk she started telling me what's wrong with you the only thing you been doing is crying talk to me did some body did something to you. i was just moving my head. this is not easy ,after a hour sitting in her house told her dr. said that i got cancer she started to cry and she said it's alright to cry but you are going to be  alright.i had to sergerys bet my leg still wollen and in pain. today i just found another mas on my right angle and i'm scare to go to the doctor know my kids are marid i'm by myself before was my kids know my  22grankids one of them ask me grandma  you never going to die but they are kids and don't understand i been in depresion what can i do. http://www.cancercompass.com/message-board/message/all,40005,0.htm macarena Sun, 20 Sep 2009 00:00:00 GMT I was just diagnoised with angiosarcoma of the breast last week on 09-03, I am currently going to MD Anderson for treatment. I just went today the 10th to see a medical Onacologist: Dr Benjamin and he informed me that my condition was very very serious. My sarcoma is currently 9cm by 9cm, he is saying that I must get a PET scan immediately, and then start 3-6 months of chemo w/ 4 different chemo drugs. Please if anyond else is in my similar position let me know if I have any options. My b-day is Monday and this is a hard time for me and my husband, We have complete faith that everything will be ok. MD Anderson is treating me in the Sarcoma department not the breast center. At first we went to a doctor in North Houston and this doctor wanted to operate and remove the toumor before radiation, this is why we immediately went to MD Anderson.      http://www.cancercompass.com/message-board/message/all,39738,0.htm sandy3 Thu, 10 Sep 2009 00:00:00 GMT I was originally diagnosed with synovial sarcoma between ribs 9 & 10 in May '05. I had a chest resection followed by Doxirubicin and Ifosomide. My CT scan in Feb '09 showed one abd. node had grown and a new left lung node (3mm).  May's CT showed 4 nodes in right lung, 2 in left lung, abd node had grown again, and a new inferior renal vein mass. All were under 2 cm.  Two of the right lung nodes have eaten away 1/3 to 1/2 of my rib 9 away...I had radiation in July for bone pain (which is much better now).  I have a CT scan coming up next week to see how much they've all grown.  Chemo is pending.What I'm struggling with is the decision of treatment. I could do Ifosomide again, but at a higher dose. There is a new drug Yondelis, but it seems it would be used infeffinitely until the drug stopped working (until the masses start growing again).  They have had a patient on it for 42 rounds (you wear a pack for 24 hours and get disconnected the next day...come back in 3 wks if your blood count is good and do it again...CT scan after every 2nd round). That's over 2 years!!  Just not sure if I can psyche (sp?) myself up for that amount of time....and also the whole PIC line thing....not sure.  The side effects are supposed to be not as severe as other chemo. Just doesn't seem like much of a life to me.Has anyone been on Yondelis?  know of anyone on Yondelis?  are there any other options? How about the PIC line...I'd like to hear your experience with it. http://www.cancercompass.com/message-board/message/all,39414,0.htm auggie Sat, 29 Aug 2009 00:00:00 GMT