CancerCompass message board discussion started by Cheese1108 on 1/20/2007 http://www.cancercompass.com/message-board/message/all,8955,0.htm Wed, 08 Oct 2008 00:00:00 GMT Wed, 08 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, my mom, 55 years of age,  was diagnosed last week with hi-grade sarcoma on her right thigh. Luckily it hasnt metastisized yet, and the doctor said because of the size of the mass on her thigh the best treatment would be amputation. But my mom doesnt want her leg amputated, so we're going for radiotherapy. Is it risky to go for radiotherapy cause anytime it might metastisize? Or is it worth trying so that her leg will be saved? Any comment would be greatly appreciated. Cheese1108 Sat, 20 Jan 2007 00:00:00 GMT My husband had a high grade liposarcoma tumor 15 cm on the back of his right leg behind the knee and thigh area. We did 6 weeks radiation and then surgery to remove it. He is walking with crutches and will undergo PT next week. They told him 10 years ago they would have amputated but they don't do that anymore. He is 51 and in great shape otherwise. It appears to be localized and they checked frequently during radiation to make sure that remained the case. good luck to your Mom. P.s. I would not let them amputate my leg! Reedarama Wed, 07 Feb 2007 00:00:00 GMT Cheese1108,how big is your mother's tumor? My mother also has liposarcoma and I want to know how big will go amputation. Thanks. Rowena Sat, 10 Feb 2007 00:00:00 GMT i am a 27 year old mother of 3 samll children. 14 months ago i was diagnosed with high grade extremely rare and aggressive type of sarcoma in my upper right thigh. They gave me radiation and a major operation and chemotherapy for 6 months. they removed all the tumor sucessfully and i recovered amazingly fast. Now..14 months later still with 3 small children i have been told today that i have matastatic synovial sarcoma-high grade, and extreemly aggressive cancer in my pelvis and leg and i am terminal with a life expectancy of less than 12 months.everyone is different and has their own view and opinion of thins but to be honest and frank with you, a one legged person is better than a dead one. I would do whatever it takes to stay alive, one leg, no legs whatever! Mitchy Tue, 20 Feb 2007 00:00:00 GMT  On 1/20/2007 Cheese1108 wrote:Hi, my mom, 55 years of age,  was diagnosed last week with hi-grade sarcoma on her right thigh. Luckily it hasnt metastisized yet, and the doctor said because of the size of the mass on her thigh the best treatment would be amputation. But my mom doesnt want her leg amputated, so we're going for radiotherapy. Is it risky to go for radiotherapy cause anytime it might metastisize? Or is it worth trying so that her leg will be saved? Any comment would be greatly appreciated.My husband has chrondosarcoma in his pelvis. We tried chinical trials of chemo and it didn't help. It just enlarged 25%. Our Doctor at Shands Hospital said radiation makes it thrive! He has no choice but to cut it out. He will be loosing his left pelvis and his leg. He can't get a fake leg, but your mom can.She is lucky it's where it is. Good luck on yoour decision. My husband just got the CT scans after chemo, 2 days ago. We are waiting for the doctors to go over the case to see what is next. Surgery of course. My husband doesn't want to loose his leg either but also he does'nt want to die. He's 64 years old.Very hard decision! Best of luck.LaRue Larue6 Sun, 01 Apr 2007 00:00:00 GMT hi. i recently was diagnosed with high grade monophasic synovial sarcoma of the kidney in december of 2006. i just finishe 5 week of radiation last month and will be starting chemo soon. please if anyone has any info. that they can share regarding the best treatment for sarcom would greatly be of help. my doctor is giving the drugs of adriamycin and ifosfomide for my chemo. has anyone tried these drugs or has any info. please help me. i have a wonderful son who is 14 years old and a newborn daughter in october 2006 and a wonderful husband and i am not ready to leave them behind. please if anyone can share any info. and any comfort it will help me and my family.my family and i will keep everyone in our prayers.  please also pray for me and my family.  god bless to everyone stay positive. lei  Lifesurvivor100 Mon, 09 Apr 2007 00:00:00 GMT my husband age 27 was diagnosed with high grade sarcoma a few days ago he had 2 removed from his left sholder treated with radiation then a year later it came back in his left thigh he gets teated at vanderbelt hospital in nashville he starts chemo next week the one in his left thigh grew out of his femer and they are not going to remove his leg they are going to take the bone out and replace it. i do not know all her history or what it is attaced to but i would get a second opinion, if you have not already  and see if the second opinion says amputation also i will keep your family in my prays i hope every thing turns out for the best Delaney Thu, 26 Apr 2007 00:00:00 GMT  On 4/9/2007 Lifesurvivor100 wrote:hi. i recently was diagnosed with high grade monophasic synovial sarcoma of the kidney in december of 2006. i just finishe 5 week of radiation last month and will be starting chemo soon. please if anyone has any info. that they can share regarding the best treatment for sarcom would greatly be of help. my doctor is giving the drugs of adriamycin and ifosfomide for my chemo. has anyone tried these drugs or has any info. please help me. i have a wonderful son who is 14 years old and a newborn daughter in october 2006 and a wonderful husband and i am not ready to leave them behind. please if anyone can share any info. and any comfort it will help me and my family.my family and i will keep everyone in our prayers.  please also pray for me and my family.  god bless to everyone stay positive. lei   Jbloodw Sat, 16 Jun 2007 00:00:00 GMT I had surgery for sarcoma in my lower back in April and June 2005, The cancer spread to the lungs. I had radiation for the 35 times and then concentrated radiation 13 more times. This was followed by adriomycin twice which did not work followed by ifosfamide chemo in 2006 which did work. I had 8 cycles of one week each. I was OK for 8 months before the cancer returned. I have now completed 5 cycles of ifos on 2007 and will likely have 8 cycles before I am released from chemo. The ifos can be difficult, depending upon the person. Scans show the chemo is working this year similar to last year. I am a 74 years old male. Recommend following oncologist's advice. Apparently adriomycin and ifos are being given simultaneously to some patients.  Jbloodw Sat, 16 Jun 2007 00:00:00 GMT hi. i hope you are feeling well.  my sister was diagnosed last august with high grade osteosarcoma in her pelvis.  after an internal amputation, pre and post surgery chemo (adriamiacin) she now has new nodules in her lungs.  she is being seen at md anderson and they are going to put her in ifosamide.. was wondering what side effects you have had from that.any info would be so very helpful. michellej Tue, 17 Jul 2007 00:00:00 GMT hi.  i so feel your pain and anguish and frustration! it's just so unbelievable.   my sister has high grade osteosarcoma (pelvis) that is now showing up in her lungs.  she has been on the adriamicain (sp?) both before and after her surgery (to remove large tumor in pelvis.)  her cell kill with the adr. was only %50 .  now that the cancer has progressed to her lungs, she is now being seen at MD Anderson -- which is supposedly one of the best and largest sarcoma treatment centers in the US.   she's in georgia. i'm in virginia. mom is in florida. so we're packing up and heading there at the end of the month to start "very agressive" ifosumide (sp) treatment.  she has a 15 year old daughter, 11 yr old son, a wonderfully brave husband of 20 years.  i've been with her for the last treatments of adr. and am heading out again in a week or so to texas.  you are not alone. although i am  a caregiver in this, i really do understand. she will have intensive treatemtn there for 5 - 8 months, if the ifusomide works.  i cannot believe she has to leave her kids, but you know -- all the doctors in her area and then at md anderson have told her that that is where she needs to be.  i would recommend at least looking at their website, and getting a consult. how are you doing on the ifosumide??  my prayers are with you and your family -- michellev michellej Tue, 17 Jul 2007 00:00:00 GMT  On 7/17/2007 michellej wrote:hi. i hope you are feeling well.  my sister was diagnosed last august with high grade osteosarcoma in her pelvis.  after an internal amputation, pre and post surgery chemo (adriamiacin) she now has new nodules in her lungs.  she is being seen at md anderson and they are going to put her in ifosamide.. was wondering what side effects you have had from that.any info would be so very helpful. Hello - my husband has a hi-grade peripheral nerve sheath sarcoma of the right thigh.  He has been receiving treatment for two years from MD Anderson.  He had six weeks of radiation and then 7 months of chemotherapy with adriamycin and ifosfamide at the same time.  The side effects are rough.  It will, of course, depend on what type of regimen she is put on.  He had 5 days a week, 24 hours a day of the ifosfamide and then a daily 4 hour drip of the adriamycin.  My husband experienced hair loss by the end of his first week of treatment but more importantly he experienced major sickness.  He just could not hold down anything.  He also had a lot of trouble with pain in any area with mucous membranes, i.e, mouth, rear-end, etc.  It was the longest 7 months of our life- HOWEVER - we stopped chemo 1 1/2 years ago and are now just on 10 week check-ups and so far...so good!  No recurrence at this time.  I would love to share more with you if you want more information.  please contact me if so.  Good luck and keep your head up.  Attitude is everything! kaydee Wed, 25 Jul 2007 00:00:00 GMT thanks so much for responding!!  My sister is flying to Houston today to begin her treatment at md anderson.  she's supposed to have 8 cycles of the ifosomide.. they're giving her an orientation on friday to tell her about the side effects, etc.  seemed like when she was on the adrimiacin she was just really tired and very icky feeling.. your husband sounds like he's doing well and i am so HAPPY for you both.  pray for us please as we emark on our new journey. I would love to keep in touch. michellej Thu, 26 Jul 2007 00:00:00 GMT  On 7/25/2007 kaydee wrote: On 7/17/2007 michellej wrote:hi. i hope you are feeling well.  my sister was diagnosed last august with high grade osteosarcoma in her pelvis.  after an internal amputation, pre and post surgery chemo (adriamiacin) she now has new nodules in her lungs.  she is being seen at md anderson and they are going to put her in ifosamide.. was wondering what side effects you have had from that.any info would be so very helpful. Hello - my husband has a hi-grade peripheral nerve sheath sarcoma of the right thigh.  He has been receiving treatment for two years from MD Anderson.  He had six weeks of radiation and then 7 months of chemotherapy with adriamycin and ifosfamide at the same time.  The side effects are rough.  It will, of course, depend on what type of regimen she is put on.  He had 5 days a week, 24 hours a day of the ifosfamide and then a daily 4 hour drip of the adriamycin.  My husband experienced hair loss by the end of his first week of treatment but more importantly he experienced major sickness.  He just could not hold down anything.  He also had a lot of trouble with pain in any area with mucous membranes, i.e, mouth, rear-end, etc.  It was the longest 7 months of our life- HOWEVER - we stopped chemo 1 1/2 years ago and are now just on 10 week check-ups and so far...so good!  No recurrence at this time.  I would love to share more with you if you want more information.  please contact me if so.  Good luck and keep your head up.  Attitude is everything! hi again. i forgot to ask you if you had to relocate to houston for treatment like we are or not. just wandering about any tips as far as getting around the medical plaza, where to stay, shop, eat, etc. m michellej Thu, 26 Jul 2007 00:00:00 GMT Hello,I was wondering how your sister's treament went at MD Anderson. I will be going out there in the next few weeks also for high grade sarcoma. I have had five surgeries and gemzar/taxotere, adriamycin/dtic all which have not worked. I will also be starting radiation soon. Im curious to know how she tolerated her treatment. ThanksYvonne yavall Fri, 07 Dec 2007 00:00:00 GMT  On 1/20/2007 Cheese1108 wrote:Hi, my mom, 55 years of age,  was diagnosed last week with hi-grade sarcoma on her right thigh. Luckily it hasnt metastisized yet, and the doctor said because of the size of the mass on her thigh the best treatment would be amputation. But my mom doesnt want her leg amputated, so we're going for radiotherapy. Is it risky to go for radiotherapy cause anytime it might metastisize? Or is it worth trying so that her leg will be saved? Any comment would be greatly appreciated. Please, your best chance is to have the amputation. This sort of cancer is tenacious. This is no time for vanity. It is her life.  WEZdaughter Sun, 20 Jan 2008 00:00:00 GMT