Latest Sarcoma discussions http://www.cancercompass.com/message-board/cancers/sarcoma/1,0,119,65.htm Thu, 15 May 2008 00:00:00 GMT Thu, 15 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed with a carcinosarcoma of the prostate.  The cancer had advanced too far to consider surgery as an option.It had also invaded his lungs.  His treatment has been as follows- radiation of primary tumor and chemotherapy  as follows.  Two rounds of doxorubicin--one round of doxorubicin and ifosfamide--two rounds of gemcitabine.  He is due for another treatment of gemcitabine in four days.  Chest xrays show no reduction in tumors in lungs.  This cancer is very rare and there is limited information available on this cancer.  Is anyone out there have any information on treatments that may have effect on this type of cancer.  I spoke to a lady with a carcinosarcoma of the utereus and she was treated on a trial basis of taxol and carboplatin and has had good results.  She was treated at Sloan Kettering.  Any help would be greatly appreciated. Carol  http://www.cancercompass.com/message-board/message/all,23267,0.htm Carol1948 Mon, 21 Apr 2008 00:00:00 GMT M son is battling epithelioid sarcoma and I am trying to find the best place for treatment of this type of cancer. Does anyone have information on this? http://www.cancercompass.com/message-board/message/all,23261,0.htm Jerome3 Mon, 21 Apr 2008 00:00:00 GMT Hi - my husband was diagnoised with spinal-cell sarcoma in 2006.  Removed a large 4 lb. tumor and then received chemo.  Had surgery again Dec. 2007 to remove smaller tumor in same area, left side.  The first surgery removed his adrenal gland and second removed his left kidney.  Just received his 3 month PET scan and small tumor growing again in same area.  Will need surgery again and probably chemo.  Does anyone have any other alternative treatments or sarcoma specialist.  We live in Washington.  Thank you http://www.cancercompass.com/message-board/message/all,22741,0.htm spouseofhusband Sun, 06 Apr 2008 00:00:00 GMT   lyomyosarcoma has spread to the lungs, suppose to be high grade, doctor wants to wait 6 weeks to do more tests and see how fast cancer is growing.  what if the nodules in both lungs when tested last were very recent?   How fast can these nodules grow in 6 weeks?  Our surgical oncoligist said that we shouldn't wait to start treatment. hubby, thanks http://www.cancercompass.com/message-board/message/all,22181,0.htm hubby Thu, 20 Mar 2008 00:00:00 GMT I had a deep tissue sarcoma removed from my leg with clean margins. Now (10 months later) there are some suspicious nodules in my lungs. If they grow in the next 3 months I will have them biopsied (cut out of the lungs). Does anyone know what the recovery from such a surgery is like? What is the best way to prepare for a healthy recovery? Any and all information is most welcome. http://www.cancercompass.com/message-board/message/all,21876,0.htm Lavender Tue, 11 Mar 2008 00:00:00 GMT    Does anyone have any knowledge of this sort of sarcoma?My daughter had a cat scan that showed a spot on her liver, they did a needle biospy, and the results showed it was this" Inflammortory fibroblastic sarcoma... Are these , perhaps a secondary cancer from the luekemia? she had undergone a sct in april of '06, and , this showed up in Oct of '07 , about a month before she passed away. the actual cause of her death, was a blood clot to the lungs, ( she had also had an open lung biopsy, since her breathing was labored, they thought it mgiht be due to a viral infection, however the results showed nothing, no cancer in her lungs, no pneumonia, or bacterial, or virual. I feel the high doses of chemo and full body radiation, certainly helped her become cancer free, but in the long run, it killed her. Does anyone who has been dx'd with  luekemia and undergoes a sct, EVER return to there somewhat normal life prior to all the treatments? I would like to know. thank you http://www.cancercompass.com/message-board/message/all,21569,0.htm Gracemary Sun, 02 Mar 2008 00:00:00 GMT Hi everyone, My wife has had a leiomyosarcoma spread to her lungs, small nodules to both lungs.  our doctor at M.D. Anderson wants to wait for 6 weeks to test again and see how fast the cancer is growing than treat her with chemo.  The tumor that was removed 2 years ago was suppose to be High-grade 10cm by 13cm.  Is there anyone going thru something simular??gee http://www.cancercompass.com/message-board/message/all,21443,0.htm hubby Thu, 28 Feb 2008 00:00:00 GMT My boyfriends mother was recently diagnosed with soft tissue sarcoma.  She has six large tumors and they say she has stage IV.  The doctors have already started her on a high does of chemo to hopefully start killing the cancer cells and shrinking the tumors.  Does anyone have any information on this type of cancer?  Thank you http://www.cancercompass.com/message-board/message/all,21338,0.htm leeanner9 Tue, 26 Feb 2008 00:00:00 GMT Hi.....I posted a message on the board back in June 2007.  That was the begining of my fathers battle.  In June 2007 my father underwent 25 radiation treatments to try and shrink the sarcoma.September 6, 2007 my father underwent surgery to remove a sarcoma  in his psoas muscle the size of a football.  They could not remove all of it but managed to save his kidney. Shortly there after he started aggresive chemotherapy treatments.  He has to be hospitalized for his treatments.  On January 11, 2008 he finished 4 cycles. After the last cycle he was then hospitalized for 2 weeks with severe complications and infection due to the state of his immune system because of the chemo. They re-scanned and re-staged him 2 weeks ago.  He still remains stage 3 and the tumor that was left behind in the surgical bed has not gotten any bigger.  Starting tomorrow I will be putting my father back into the hospital to start 1 of 2 more chemotherapy cycles.I have been taking care of my father this entire time and it is so difficult to watch someone you love go through this and wonder if the treatment is worth the sickness because no one can tell you anything definitive about this cancer except that it will take his life.  I just wish we could get straight answers but they just dont know enough about this cancer.  It is very frustrating.  I guess I am just venting.......  http://www.cancercompass.com/message-board/message/all,21251,0.htm Lisa1967 Sat, 23 Feb 2008 00:00:00 GMT If you or a family member or friend has sarcoma, you might find the video presentation "A Forgotten Cancer" informative. It can be accessed on YouTube at http://tinyurl.com/3cv2du   http://www.cancercompass.com/message-board/message/all,21213,0.htm Bruce_S Fri, 22 Feb 2008 00:00:00 GMT My uncle was diagnosed in Nov 07 w/ metastatic sarcoma.  My family and I are completely devasted.  He was hosptialized on Saturday 01/26/08 after coughing up blood.  We were told on Wednesday 1/29/08 that he has stage 4 and we need to prepare for his depature.  Doctors say he may have a couple of months left.  The tumor is imbedded in his left lung and is pressing on a major artery near is heart.  Doctors say the tumor is non-surgical and it's too large. My uncle started chemo in November however the tumor has gotten much bigger.  About 13 + years ago he was in a terrible car accident w/ a severe leg injury.  2 years ago the doctors, found he had cancer in that same leg and amputated that leg to hopefully kill the cancer and prevent it from spreading.  He was on chemo and according to him a much stronger chemo than he was put back on in November.  My family and I are devastated and no one has ever had cancer in our family before.  We dont' know where to start.  The doctors have given up all hope, but we believe in a higher power and have faith.  My uncle is not ready to give up and neither are we..  Any suggestions or any similar stories.  I'm desperate..  Where do we turn, and what can we do.  ANY HELP IS GREATLY APPRECIATED.  Any one here with metastatic sarcoma or can anyone help me understand what it is.  Not sure if it's a bone cancer or what.  Thanks in advance. http://www.cancercompass.com/message-board/message/all,20566,0.htm shannon2930 Fri, 01 Feb 2008 00:00:00 GMT Hello im new to the this website and im so glad I found it.. I have spent 2 days reading all your stories and have been so touched by them all.. Its so nice to be able to find other people in the same situation as my best friend..My Name is Sam/Vampsy im 31 years old from London England.. My best friend is called Jane she is 36 years old and is living with Retroperitoneal Sarcoma.. She first had a tumour in her leg which was removed.. She started getting really bad back pains which she thought at the time was a water infection.. After loads of visits the doctor and loads of pain killers he sent her to a orthopaedic physiotherapist after a an hour long chat about her cancer in the leg he sent her to have a special kind of blood test.. She was referred back to the Royal Marsden in London where she was told that she had another Sarcoma but it was wrapped around her Aorta and pushing onto her Vena Cava they called it a "spindle Cell sarcoma" Her sarcoma is inoperable due to it being wrapped around the Aorta.. She had 25 lots of Radiation over the course of 5 weeks.. And 6 doses over 18 weeks of Chemo the tumour was 10x11cm which was much smaller then the one in her leg which was 4x5 / 16cm..Jane was always under the impression that she would grow old with her cancer under treatment.. Until we see Professor Ian Judson which is the top professor in the whole of Europe.. He explained to us that day that Jane's cancer would shorten her life dramatically which came to a massive shock to us all.. This was 14 months ago.. He said her life span would be 5 yrs from the day she was diagnosed but Jane takes her dates from when the pain first started 2 years ago this month.. Even though Jane stopped her Chemo 15 months ago her tumour has shrunk to 6x5cm which is a very good sign.. He did also make us aware that 50% of the people with this sort of cancer died within the first year.. So Jane is doing very well.. I would also like to add that Jane has 2 children.. Jamie who is 17 and Adele is nearly 15 she is a single mum of 13 years who loves her children too bits they are her world.. Its so sad to sit and have to watch this beautiful loving family fall to pieces by this terrible illness.. Its hard for me aswell being her best friend knowing that there isn’t a single thing I can do to make her better in anyway shape or form.. All I can do is be there for her and the children.. The kids are so strong and so is Jane.. She never sits about mopping about her illness she takes everyday as it comes.. She is a hero in my eyes because I don’t think I could go through what she’s going through..I would love to hear from anyone about any information about this kind of Sarcoma..Be Blessed friends.. Samantha xxx http://www.cancercompass.com/message-board/message/all,20326,0.htm Vampsy Fri, 25 Jan 2008 00:00:00 GMT Hi,I don't know what to do to help my dad. I think he has retroperitoneal sarcoma, intra-abdominal sarcoma. I don't know where to start or if that's even exactly what he has. That's what a family friend's son (who's a surgical resident) said to look up/google. I saw a sample scan of his abdomen area, he has a very large mass growing in there. According to his CT scan report, it's 17CM X 12 X15 IN DIAMETER. It's huge. His organs on the right side of his abdomen are displaced. You can't even see them in some of the CT scans, they are blocked by the growth. I have no idea what to do, he just told us (my sister and brother and I) a few days ago that he had something growing inside. NONE of us knew it was this big. So I've been trying to read a little online tonight, but I don't know if it's because I'm tired, it's not making much sense to me.I don't know what other tests he should do. He has the CT scan, Doesn't want to do a biopsy because he's afraid of the mass rupturing. What does he need to do? Can someone please help me? I am shaking right now.  I'm trying to help my parents as much as I can with research and what not because their English is not the greatest. They immigrated here long ago, but still it takes awhile to read stuff like this. Thanks for any advice/direction you can give me. I really really appreciate it.   http://www.cancercompass.com/message-board/message/all,19809,0.htm laivly Thu, 17 Jan 2008 00:00:00 GMT My name is Linda.  I was diagnosed with liposarcoma of the stomach five years ago.  My tumor was quite huge.  I also lost my left kidney.  As a result of radiation I have had nerve damage and live with chronic pain every day of my life.  It has been a very difficult road.  I just recently had a reoccurrence of the same tumor in the same past radiated area which was a huge disappointment.  The tumor is also behind my stomach and is of a slow growing grade.  I am very discouraged as my surgeon can't resect it as he would have to take out my diaphragm and stomach.I hope someone will email me back and let me know your experience and where you went for help.  I need to stay within a sarcoma center.  I live in Seattle, WA.  God bless you.  Linda http://www.cancercompass.com/message-board/message/all,19198,0.htm Cecea Sat, 29 Dec 2007 00:00:00 GMT my dad, 58, has been diagnosed with high grade soft tissue sarcoma, it is unclassified.  It started in the chest cavity (mediastinum), had major surgery in june and was cancer free for 2 months.  The monster is back and with a vengeance.  This time is attached to his heart and has a metastasis to his lung (still small, but that´s no consolation).  It is growing rapidly.  He´s treated at MD Anderson and I think we are at the end of the road there.  We are not ready to quit on him yet.  He does not look or feel sick, so we are still hoping on a miracle.  Has anyone heard of Coley´s Vaccine, or hyperthermotherapy?????We´ve read a lot but are looking into it, I wondered if anyone had any experience with it.Thanks a lot and hope all of you are doing betterErika (from Costa Rica) http://www.cancercompass.com/message-board/message/all,19035,0.htm erikucha Thu, 20 Dec 2007 00:00:00 GMT My husband of only a year was recently diagnosed with a rare brain tumor after surving in Afghanistan for 11 months. He has been undergoing chemo treatment and has had 3 operations. The tumor is already growing back after a month. The doctors have told us to make him comfortable and hospice will be making the pain go away. My husband is with it, he is not stuck in a bed unable to speak, he still functions! He has a sarcoma brain tumor. Does anyone have any ideas? http://www.cancercompass.com/message-board/message/all,18384,0.htm Elanor Tue, 27 Nov 2007 00:00:00 GMT I'm seeking treatments options for my 64 year old grandmother who was diagnosed with high grade leiomyosarcoma of the lower extremity.  She went in for a historectomy and the doctors found cancer and removed it all, but found it had spread to her lungs already.  The doctors are saying there is no treatment.  Looking for information on possible treatments that have helped others in same situation.  Thanks Serene  http://www.cancercompass.com/message-board/message/all,17594,0.htm serene Thu, 01 Nov 2007 00:00:00 GMT sorry about the delay,results from my scans came back late, and i was so busy with new baby . the results were positive regarding sutent, my tumours have all decreased in size, and the tremors have also decreasd in frequency but i still have tremors in my hands, as my sarcoma is rare in ireland every step is new but exciting as every day is full of promise but also intrigue as you wake up in good form or bad form but always be positive, colm http://www.cancercompass.com/message-board/message/all,17266,0.htm brandyman01 Sun, 21 Oct 2007 00:00:00 GMT I was diagnosed on 7/2/07. Since then I had 3 sessions of chemo and 25 of radiation. My surgery is set for 11/8/07 and expect to have 2 more sessions of chemo after.   What restrictions should I expect after the tumor is removed from my left thigh?  Will I have full use of my leg? http://www.cancercompass.com/message-board/message/all,17103,0.htm danogi Mon, 15 Oct 2007 00:00:00 GMT Hello out there.My mother has retroperitoneal liposarcoma, diagnosed since late April.   I am looking to connect with other people with the same cancer or have a loved one who is dealing with it.   Here's my my mom's story.....Mom just turned 80 but looks and behaves like she is at least a decade younger.  She and her family have had a rough year, beginning with her surgery.Her tumor was discovered incidentally, in January, when a workup for gallbladder surgery revealed no gallbladder problems, but instead a mass of about 3 cm near the renal vein.   Surgery was scheduled because a needle biopspy was deemed too risky because of the vein.At the end of March, 2007 Mother had surgery at Brotman Medical Center (Culver City) to remove this mass;   It was a complicated surgery in which she nearly died, losing 5 pints of blood.   The surgeon was not able to completely resect the mass, and told us so following surgery.   However, he said he thought there was a chance that the mass was benign (he was either placating us or incompetent.    Masses wrapped around renal veins are nearly always malignant.)The frozen section pathology revealed a sarcoma, "favor(ed) low grade" in the grading of this tumor.   However, the tissue was also sent to Stanford University and 3 weeks later, we got a different diagnosis.  It was deemed a dedifferentiated liposarcoma (high grade) with a propensity to metastasis.Her Medicare HMO sent her to the group's oncologist, Dr. David Plotkin, who called the cancer "indolent" and basically wanted to "watch and wait".   He didn't want to do immediate imaging studies but instead wait until she had healed from surgery.Imaging studies in July revealed that the tumor had grown.  Plotkin still wanted to do nothing, but during a consult said that mother had "lived a good long life" (!!!!).   (Interestingly, Mom's surgeon said he wanted to do another surgery and remove her left kidney to try to get the cancer).  Plotkin seemed miffed that we wanted a 2nd opinion, and said "You won't find anybody better than me".    We mentioned we were interested in the clinical trials at City of Hope, using protease inhibitors (used for HIV patients.   Plotkin patronizingly said "everyone is trying protease inhibitors these days".   He was unhelpful and unwilling to try anything on our mother.    We fired him and moved on.We subsequently went to City of Hope (Drs. Chow and Benjamin Paz, surgical oncologist) and Cedars-Sinai's sarcoma center (Dr. Charles Forscher and Dr. Jason Cohen).City of Hope does not feel that Mom's tumor, which has grown 4 cm from July to September 18, is resectable.   They also do not feel that radiation and chemo have any demonstrable effect in prolonging survival for a person with a high grade retroperitoneal liposarcoma.   Radiation is merely to palliate symptoms, and Mom has none at this time.  They stated that patients who do radiation/chemo actually do 3-5% WORSE.   Their only recommendation is that Mom participate in the clinical trial.     This obviously was very, very discouraging.    We were told (which confirmed my Internet research) that patients with dedifferentiated liposarcomas in the retroperitoneum live an average of 18 months from diagnosis.   The radiation oncologist we saw at 21st Century Oncology (Dr. Patricia Gordon, in Bev Hills) was a little more positive.   She will work with the Cedars-Sinai sarcoma center, and wants to start my mother immediately on 7 weeks of radiation (IBRT ?? an expensive and very focussed radiation beam) and wants to "sensitize" the radiation with some chemotherapy.   She has made no guarantees, but she believes that the radiation may halt the tumor and even shrink it, at least to prevent pain that may develop.  Dr. Gordon thinks this treatment may prolong my mother's life.Thank you for bearing with these details.  If you have anything to share about experiences with and treatments for retroperitoneal liposarcoma, please email me directly to:   --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- .   Mom and I will be grateful.I hold to the hope that Mom will be in the small percentage of patients who have survived longer with this disease.   She is a wonderful, vibrant woman (who still works!!) with 3 young grandkids (her daughters are over 40 moms) and alot of living left in her.   Her own mother died at 95 (ironically from an abdominal tumor), so we always figured Mom will have a very long life.One other note.... Mom's husband of 58 years, our dad, died 2 days after mom's 80th birthday of complications from end-stage Alzheimer's.  She'd taken care of him up until her March surgery, seven years of caregiving a memory-impaired spouse.   It's been a rough year........and our mother deserves a chance to survive and enjoy life now for herself.Thank you for listening.   Leslie   http://www.cancercompass.com/message-board/message/all,16396,0.htm Leslie Y. Sat, 22 Sep 2007 00:00:00 GMT Three weeks post op adomininal hysterec. - chills, fever..not medicinerelated not menoposal either.Does anyone have any info on this new development?Please respond!   http://www.cancercompass.com/message-board/message/all,16272,0.htm locomare Tue, 18 Sep 2007 00:00:00 GMT HI,6/06 I was diagnosed was a 4 cm fiborid.8/29/07 I went to surgery for a partial hysterectomy due to the enlarged fibroid. Dr. found an 12cm sarcoma within a 18x27cm fibroid. Dr. had an OBGYBN/Oncologist join the surgery and they did a total abdominal and took some lymph nodes as well, although they were healthy. Stage 1Grade 3Tumor was negative for estrogen receptorsPositive for invasion of myometrial veinsMitoses 9-50/10CT Scan was performed and no other tumors were found.My oncologist is recommending immediate abdominal radiation treatment and chemo consisting of Doxorubicin(Adriamycin)/Ifosfomide. Has anyone received these?Everything I have read says chemo treatments don't work as a preventative measure only if it has already spread and will just damage me prematurely. Where would you go for a 2nd opinion? I am in Oregon.ANY ADVICE WOULD BE GREATLY APPRECIATED.Thanks,KC  http://www.cancercompass.com/message-board/message/all,16226,0.htm locomare Mon, 17 Sep 2007 00:00:00 GMT 10 days ago my husband had a 16 cm sarcoma removed from his abdomen.  It was attached to the pancreas but had not penetrated.  However there were spots on his liver - which they biopsied during the surgery.  The liver spots are high grade sarcoma which has vascular involvement.  My husband has missed 3 days work in the last 5 years and worked all day before his surgery.  He didn't have any symptoms and we had no idea it was cancer because we were told the biopsy he had done before surgery wasn't malignant.  We expected him to be in the hospital for 5 days and back to work in 6 weeks.  We have been told he will need to have radiation and then chemo after he recovers and is stronger.  The doctor also said that it could go either way, but that it's not likely my husband will ever work again.   He is self employed and I work for him.  Our whole world changed in a day.   Does anyone have experience with leiomyosarcoma.  Treatment/Prognosis.  The doctors say it is quite rare - not one they see very often. Any response would be appreciated.ThankYou http://www.cancercompass.com/message-board/message/all,16115,0.htm KJaye Wed, 12 Sep 2007 00:00:00 GMT 10 days ago my husband had a 16 cm sarcoma removed from his abdomen.  It was attached to the pancreas but had not penetrated.  However there were spots on his liver - which they biopsied during the surgery.  The liver spots are high grade sarcoma which has vascular involvement.  My husband has missed 3 days work in the last 5 years and worked all day before his surgery.  He didn't have any symptoms and we had no idea it was cancer because we were told the biopsy he had done before surgery wasn't malignant.  We expected him to be in the hospital for 5 days and back to work in 6 weeks.  We have been told he will need to have radiation and then chemo after he recovers and is stronger.  The doctor also said that it could go either way, but that it's not likely my husband will ever work again.   He is self employed and I work for him.  Our whole world changed in a day.   Does anyone have experience with leiomyosarcoma.  Treatment/Prognosis.  The doctors say it is quite rare - not one they see very often. Any response would be appreciated.ThankYou http://www.cancercompass.com/message-board/message/all,15994,0.htm KJaye Sat, 08 Sep 2007 00:00:00 GMT hi my 19 year old brother has cancer that is is in the brain. he has a very large tumor that is growing out of his nose completetly blocking his nostril. the tumor is starting to grow outof his other nose. our own docters have giving up hope on him. we are looking for surgeons who specialize in removal of tumors from his nasal passage way. we are looking for a docter to help save a young persons life http://www.cancercompass.com/message-board/message/all,15339,0.htm jesussaves Wed, 15 Aug 2007 00:00:00 GMT