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Synovial Sarcoma of the Foot


#1

Dear friends,

Has anybody of you received anthracyclines to cure the Synovial Sarcoma of the Foot?

I am a 51-year old senior lecturer in English, and in mid-February 2015 I was diagnosed with Synovial Sarcoma of the Foot with the heel-bone invasion. It was detected by a FISH test after a biopsy. The tumor was found deep in my foot, it could not be seen on the sole, and after 18 months of different investigations the MRI scan showed a white mass growing in the soft tissue next to the heel-bone.

I have a 20-year history of heel pain and treatment for plantar fasciitis without relief in the left foot. In summer 2013 I noticed edema of my left leg -- and the DVT, vein insufficiency, and the lymphedema were excluded. In January 2014 I first noticed that my left ankle started swelling during the day. After the Baxter nerve entrapment was excluded, the MRI scan was finally done ...

In March 2015, the tumor was successfully removed with clear margins and limb salvage. The state-of-the-art tumor resection was done by an excellent surgical oncologist, and the surgery was completed by a really good foot reconstruction made by a dedicated plastic surgeon.

In the beginning of May 2015 I am starting with my first round of chemotherapy with anthracyclines. After 5 cycles of chemo, the radiotherapy will follow. I hope this will help me get good health, strength and joy in life again.

I would be grateful for any advice on how to prepare for the chemo. Please get in touch if someone has got a similar history.

Best,

Moytsa


#2

The conventional first line chemo treatment for synovial sarcoma is a combination of doxorubicin (adriamycin) and ifosfamide. Doxorubicin is an anthracycline and I am assuming this is what you're going to get? Make sure you are treated by a sarcoma specialist. The disease is too rare to be handled by any oncologist...


#3

Thank you so much, Elodie. I was encouraged to do some research, and I think I will ask my oncologist what exactly they are going to treat me with ... It could be possible that they do not have many patients with SS.


#4

Moytsa, you may want to use pubmed to find out if there are sarcoma specialists in Slovenia. Just to give an example how to proceed, I ran a search "synovial sarcoma Slovenia" (you can use "sarcoma" instead of "synovial sarcoma" to get more results":

http://www.ncbi.nlm.nih.gov/pubmed/?term=synovial+sarcoma+Slovenia

When you click on a study link, the abstract will appear. Then you can click on "Author Information" and see where the study was done.


#5

Thank you so much again for your help, Elodie. I read in a research paper that only 3 new cases of SS were diagnosed in Slovenia in 2009. I noticed some discrepancies regarding the incidence worldwide: some papers say 1-3 persons from the population of one million are diagnosed with it; in others it says from the population of 100,000 ..


#6

It's 1-3 persons per million. There is about 800 people diagnosed every year in the US, 80 in the UK. I see Slovenia has about 2 million people so 3 cases sound correct. You won't be able to find an oncologist who sees a lot of synovial sarcoma per year but may be you can find one that has seen more than 10 cases in his career? I guess it depends on whether there are oncologists who chose to specialize in sarcoma in your country like they tend to do in many other countries...


#7

Hello again,

I think I will receive proper treatment for SS of the extremities: a combination of Epirubicin (anthracycline drug) & Ifosfamide & Mesna, supported by granulocyte-colony stimulating factors (according to the Italian research paper by Frustaci et al (JCO). I am starting the first of the 5 cycles of chemo on Tuesday, 5 May, and they will be repeated in 3 weeks time. Has anybody received such treatment for the SS of the foot? How should I prepare for the chemo?


#8
J Clin Oncol. 2001 Mar 1;19(5):1238-47.

Adjuvant chemotherapy for adult soft tissue sarcomas of the extremities and girdles: results of the Italian randomized cooperative trial.

The abstract of the article is available here.


#9

Here is a report about my experience with chemo (side effects are at the bottom of the page):

https://sites.google.com/site/synovialsarcoma/chemotherapychimiotherapie

You'll find the details about my regimen which is a bit different than yours. But I assume the side effects should be similar.

I think Danie did epirubicin and you may want to ask her about her side effects with it:

http://www.synovialsarcomasurvivors.org/profile/Danie

My advice: relax and take it one day at a time. It's going to be a tough ride but the torture is only temporary ;-) Will you be in the hospital overnight or will you go back home every night? If you go back home every night, it'd be better if you are not alone and if somebody can drive you to and from the hospital. A good support from family or friends eases the journey...


#10

Thank you so much, Elodie, you have a very informative and helpful website, and thank you for Danie's link. I will stay in the hospital for six days during each round of chemo, and I hope my body will respond well to the treatment. However, the possible side effects are only temporary ... Have a nice May Day holiday, Moytca