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  #1  
Alt 17.11.2016, 09:16
AHB AHB ist offline
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Standard fibromyxoid sarcoma

Hello everybody sorry for writing in english because unfortunately I don't speak German.
I am writing to get some help regarding the sarcoma treatment in Germany. Here is my story
almost two years ago I had a malignant tumor (Low grade fibromyxoid sarcoma) 7 CM size on my back (in the trapezius muscle) which I removed it by surgery on May 2016 with good margin, Unfortunately this tumor is locally recurrent, I noticed a hard lump at the same location just five months after the surgery. Although I got a 6 weeks radiotherapy after the surgery,last CT scan shows a 7 cm tumor at the same place of the first one furthermore there were a multiple nodules unchanged since 6 months at the right lung I dont know whether it is metastatic tumor or just normal nodules.

Thank you and I hope the best for you all.

Geändert von gitti2002 (17.11.2016 um 17:50 Uhr)
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  #2  
Alt 19.11.2016, 02:55
pulizwei pulizwei ist offline
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Ort: RP
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Standard AW: fibromyxoid sarcoma

Hey AHB,

I had the same type of tumor in my left shoulder early 2014.

After surgery and removal of an 8.5 cm grade 2 tumor, I was treated with a chemo
therapy in 4 cycles 1 week treatment, 3 weeks brake with
doxorubicin and Ifosfamid.

After that I had a radio-therapy with joint reduced chemo-treatment only
Ifosfamid for another 6 weeks.

I am ""clean"" since.

Nonetheless there is discussions between users on this board, if chemotreatment is necessary.

I had a chance to visit a medical class of the university treating me to provide
""patient's view"" of things to the upcoming/going-to-be medical personel studying medicine.

They introduced clinical long-term studies which said the help and affection of
tiumors and after resection surrounding area can not be proved,
but compared patients that had only 0-resection of tumor to those who passed adjuvant chemo-therapy and radiotherapy after resection.

The survival ratio after 5 years amongst those patients with chemo- and radio-therapy was two-digit-percentage higher, I think over 90, when the ones who only had their tumor removed was somewhat over 60.

Maybe that makes the difference.

Possibly german clinics perform different in surgery.

My tumor was resected with a 1-2 cm into non-contaminated tissue
including cutting off a chip of the shoulder blade, and resection of the upper Trapecius muscle .

Wish you the best
pulizwei

Geändert von pulizwei (19.11.2016 um 02:57 Uhr)
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  #3  
Alt 21.11.2016, 01:12
der1fuchs der1fuchs ist offline
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Registriert seit: 21.11.2016
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Standard AW: fibromyxoid sarcoma

Hello AHB,

I have had a LGFMS in the right thigh in 2004. although it was removed with wide clear margins i got a local recurrence in 2016. The recurrece was only about 2,7 cm and resected with wide clear margins.
Over the years i learned that the LGFMS grows very slowly and shows a very less mitotic and proliferation activity. Therefore it is not very sensitive for chemo or radiation therapy.
My doctors told me that the the only way to handle the LGFMS is the resection of local recurrence and distant metastasis in the lungs with wide clear margins

Maybe a target therapy based on pazopanib etc. can give us advantages in future.

One point is very important. Local recurrences as well as distant metastasis can occur very late in the clnical course (after 20 years). Therefore a detailed follow up is important.

Last year a lump was also detected in my lung. Everyone thought that it would be a metastasis after 11 years from the LGFMS. Now we learned, that it was something else, which is benigne and therefore not dangerous.

Best wishs for all of you.
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fibromyxoid sarcoma


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