High Grade Soft Tissue Sarcoma

My mother has been diagnosed with a high grade soft tissue sarcoma. Her local oncologist to her to the brink of death with chemo consisting of Ifex and Doxil.  After two cycles,  she decided the suffering was not worth the benefit as he told her it was pallative care only.  We went to the Mayo Clinic for a second opnion who confirmed the deadly diagnosis and said the likely hood for further metasis is highlyl likely and we are looking at 12-15 months.  She has already lost 5 months of her life receving and recovering from the awful effects of chemo.  Now Mayo had started her on a new chemo regimine of Gemzar and Taxotere.  Any one have information on either of these drugs?  I am the only person my mother has left, my sister and only sibling died 12 years ago from MFH, so I try to get all the information I can.  Any thoughts or advise would be so appreciated.

 

On 10/19/2008 emb1960 wrote:

My mother has been diagnosed with a high grade soft tissue sarcoma. Her local oncologist to her to the brink of death with chemo consisting of Ifex and Doxil.  After two cycles,  she decided the suffering was not worth the benefit as he told her it was pallative care only.  We went to the Mayo Clinic for a second opnion who confirmed the deadly diagnosis and said the likely hood for further metasis is highlyl likely and we are looking at 12-15 months.  She has already lost 5 months of her life receving and recovering from the awful effects of chemo.  Now Mayo had started her on a new chemo regimine of Gemzar and Taxotere.  Any one have information on either of these drugs?  I am the only person my mother has left, my sister and only sibling died 12 years ago from MFH, so I try to get all the information I can.  Any thoughts or advise would be so appreciated.

My wife has had 2 cycles of ifex and just completed 2 cycles of Gem/tax; the MPNST spread to the lungs during ifex and rad so we are hopeful with the Gem/tax; should have scans in a week or 2 to see. I am trying to find someone who has taken Gem/Tax and see what it did for them too. What subtype of sarcoma does your mom have and where?   

 

My mothers case was somewhat difficult to classify.  Even the Mayo Clinic could not come up with anything definiate on it.  All they could say is that it is a high grade soft tissue sarcoma.  My mother also has neurofibromatosis and has had chem and radiation from a previous colon cancer 17 years ago.  Based on her history, they felt it was most likely a

neurofibroma sarcoma.  It started out as a small tumor on her hip that mimicked a neurofibroma.  As it got larger and nastier, the local docs began to take closer notice and after it had reached the size of a medium to small sized appel, they decided it was something to look closer at.  Go figure, she was walking around with a cancerous tumor for almost 6 months before anyone other than us became concerned. That is when the oncologist put her on a 24 hour a day, 7 day inpatient hospital infusion of Ifex and Doxil, which literaly took her to the brink of death.  After dealing with an oncologist who was rude, cold and completely unapprochable, we decided to find some one who could help us through this horrible process, that is how we wound up at the Mayo Clinic.  We found a team of wonderful and carring professionals there who confirmed the diagnosis and the grim prognosis.  They suggested to try her on Gemzar/Taxotere treatment for palliative care only.  She started her first dose of Gemzar last week and takes her first dose of Taxotere this week.  So far she is doing fairly well, says she is begining to feel some of the effects.  I just don't know what to make of it all, I have been on such an emotional rollercoaster and trying to keep up with her and her treatment schedual and work has really been trying.  Please keep in touch, I would like to know how things go with your wife.

 

 

On 10/20/2008 emb1960 wrote:

My mothers case was somewhat difficult to classify.  Even the Mayo Clinic could not come up with anything definiate on it.  All they could say is that it is a high grade soft tissue sarcoma.  My mother also has neurofibromatosis and has had chem and radiation from a previous colon cancer 17 years ago.  Based on her history, they felt it was most likely a

neurofibroma sarcoma.  It started out as a small tumor on her hip that mimicked a neurofibroma.  As it got larger and nastier, the local docs began to take closer notice and after it had reached the size of a medium to small sized appel, they decided it was something to look closer at.  Go figure, she was walking around with a cancerous tumor for almost 6 months before anyone other than us became concerned. That is when the oncologist put her on a 24 hour a day, 7 day inpatient hospital infusion of Ifex and Doxil, which literaly took her to the brink of death.  After dealing with an oncologist who was rude, cold and completely unapprochable, we decided to find some one who could help us through this horrible process, that is how we wound up at the Mayo Clinic.  We found a team of wonderful and carring professionals there who confirmed the diagnosis and the grim prognosis.  They suggested to try her on Gemzar/Taxotere treatment for palliative care only.  She started her first dose of Gemzar last week and takes her first dose of Taxotere this week.  So far she is doing fairly well, says she is begining to feel some of the effects.  I just don't know what to make of it all, I have been on such an emotional rollercoaster and trying to keep up with her and her treatment schedual and work has really been trying.  Please keep in touch, I would like to know how things go with your wife.

 

Thanks for sharing. The taxotere is really rough, make sure that she has plenty of Zofran to take in the week or two after. Pretty severe bone aches hair loss and hot cold flashes seem to be the worst but it really depends on the person. Nulasta shot really helps wbc but the rbc goes down almost into the danger zone so there will be some loss of strenght with the anemia. What is your mothers age? We did not have too much trouble with the 2 cycles of ifex inpatient 7 day drip before but then again it didn't stop the mets either. Hope this helps and we have prayed for your mom too (Rom 8:28).

 

 

On 10/21/2008 Calhusband wrote:

 

On 10/20/2008 emb1960 wrote:

My mothers case was somewhat difficult to classify.  Even the Mayo Clinic could not come up with anything definiate on it.  All they could say is that it is a high grade soft tissue sarcoma.  My mother also has neurofibromatosis and has had chem and radiation from a previous colon cancer 17 years ago.  Based on her history, they felt it was most likely a

neurofibroma sarcoma.  It started out as a small tumor on her hip that mimicked a neurofibroma.  As it got larger and nastier, the local docs began to take closer notice and after it had reached the size of a medium to small sized appel, they decided it was something to look closer at.  Go figure, she was walking around with a cancerous tumor for almost 6 months before anyone other than us became concerned. That is when the oncologist put her on a 24 hour a day, 7 day inpatient hospital infusion of Ifex and Doxil, which literaly took her to the brink of death.  After dealing with an oncologist who was rude, cold and completely unapprochable, we decided to find some one who could help us through this horrible process, that is how we wound up at the Mayo Clinic.  We found a team of wonderful and carring professionals there who confirmed the diagnosis and the grim prognosis.  They suggested to try her on Gemzar/Taxotere treatment for palliative care only.  She started her first dose of Gemzar last week and takes her first dose of Taxotere this week.  So far she is doing fairly well, says she is begining to feel some of the effects.  I just don't know what to make of it all, I have been on such an emotional rollercoaster and trying to keep up with her and her treatment schedual and work has really been trying.  Please keep in touch, I would like to know how things go with your wife.

 

Thanks for sharing. The taxotere is really rough, make sure that she has plenty of Zofran to take in the week or two after. Pretty severe bone aches hair loss and hot cold flashes seem to be the worst but it really depends on the person. Nulasta shot really helps wbc but the rbc goes down almost into the danger zone so there will be some loss of strenght with the anemia. What is your mothers age? We did not have too much trouble with the 2 cycles of ifex inpatient 7 day drip before but then again it didn't stop the mets either. Hope this helps and we have prayed for your mom too (Rom 8:28).

Thanks for the heads up, my mother is 67 years old, and already in a delicate state both physically and emotionaly.  She ended up in a nursing home for 3 months after her 2 cylces of Ifex and Doxil, her hair is already gone, so that will not be a change, I was hoping for less of the severe blood count drops and nausea with the new chemo.  Time will tell.  Thanks and keep the faith.

 

Thanks

 

On 10/20/2008 Calhusband wrote:

 

On 10/19/2008 emb1960 wrote:

My mother has been diagnosed with a high grade soft tissue sarcoma. Her local oncologist to her to the brink of death with chemo consisting of Ifex and Doxil.  After two cycles,  she decided the suffering was not worth the benefit as he told her it was pallative care only.  We went to the Mayo Clinic for a second opnion who confirmed the deadly diagnosis and said the likely hood for further metasis is highlyl likely and we are looking at 12-15 months.  She has already lost 5 months of her life receving and recovering from the awful effects of chemo.  Now Mayo had started her on a new chemo regimine of Gemzar and Taxotere.  Any one have information on either of these drugs?  I am the only person my mother has left, my sister and only sibling died 12 years ago from MFH, so I try to get all the information I can.  Any thoughts or advise would be so appreciated.

My wife has had 2 cycles of ifex and just completed 2 cycles of Gem/tax; the MPNST spread to the lungs during ifex and rad so we are hopeful with the Gem/tax; should have scans in a week or 2 to see. I am trying to find someone who has taken Gem/Tax and see what it did for them too. What subtype of sarcoma does your mom have and where?   

My husband is currently taking Gemzar & Taxotere (several rounds) & it didn't help at all. One large mass even grew during treatment.  I know I don't have encouraging news but every patient is different. This is a horrible and mean cancer!

 

My husband is supossed to start GemTax in 2 weeks but he is going to have both at the same time on day 1 and 8 and then a week off. What can we expect as far as side effects? He tried AIMS bit had awful side effects from ifasfomide so they had to stop it. His WBC and RBC are really low right now so he got a shot of neelasta today and the "other" one yesterday and today. We hope his counts will come up so he can start in 2 weeks. His sarcoma spread to his liver.

Hi,

  My brother also has a high grade soft tissue sarcoma...pleomorphic. After 2 rounds of AIM with no progress, he was switched to Gem/Tax..gem one wk, both the next, and off on the third. He is about to finish his 2nd complete round and we will then get another progress check. The Gemcitabine was easily tolerated, but the Tax was pretty rough...terrible leg pains and weakness, blisters on feet, very tired. He recovered in about 10 days..and is about to get it for the 2nd time now. Hopefully he won't hurt as much this time..and hopefully there will be some progress shown.

  His cancer is wrapped around his aorta and very large...so surgery is not an option unless the chemo can shrink it. Radiation is too dangerous in that area...If anyone knows of any other chemo success stories, please let us all know. Sarcoma is rough. A positive mental attitude can do wonders, though. My brother is still working and working out at the gym..looks wonderful. (age 51)

  Stay positive and my thoughts are with you all.

Still searching...

Hi,  I also have NF and just found out that I have a sarcoma in my left leg and there may one in my pelvis and chest.  I'm on my 2nd week of radition on my leg.  I do not know or understand much about this cancer but it seems that your mother and I have a lot in commen.  any information you can give me on this would be great.  I hope that you mother is doing well. 

Thanks, 

Michele

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Where are you being treated? My best piece of advice to you is to run, not walk to a hospital that specializes in treating sarcomas. They are rare and just a regular cancer hospital is not really enough for you. Be your own advocate..research, research, research. The top 3 hospitals for sarcomas are Sloan-Kettering in NYC, MD Anderson in Houston and Dana Farber in Boston. We have been told again and again that the ONLY hope for a cure for a sarcoma is surgery..CUT IT OUT ASAP!  If you have mets in places where surgery is risky, check out ablating them...Dr. Peter Julien at Cedars-Sinai in L.A. just did a special about it..I spoke to him and he is awesome!  Once your cancer has spread, you'll find that treatment options are more difficult..so you need to be aggressive and focus on getting rid of all of your tumors asap.

 Best of Luck to you-you CAN beat this! STAY STRONG!!!!

stahswim