Hi. My name is Ivan. I got synovial sarcoma in my left leg below the knee. It spreads to the knee joint and envelopes my nerves and vessels. It makes it very difficult to resect tumour locally. It’s size about 10.5mm/7.9mm/6mm. I got no metastasis in my lungs. German, Israel and Russian doctors say that amputation above the knee is the best option. As soon as I got no mets anywhere I ll have good chances to stay cancer free. It’s very hard decision to amputee a leg. It’s scheduled on Tuesday. Do u think I m making the right decision? Or may be I should try clinical trials or smth else. I just think that somebody here got similar cases like mine.
Sorry for the delay in my answer and my sharing of your discussion. Today is Tuesday and I guess you are already on the surgical table... Choosing a treatment is a little bit like playing lottery where amputation is the number most likely to win but not guaranteed to win :-(
As an above-the-knee amputee myself, I can tell you that amputation will add some challenges to your life but a good quality of life is still possible.
Good luck with the surgery!
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Hi I think you should first do chemo therapy and try to shrink the tumor that will be 6 cycles of chemo and medicine is known there are 2 kinds of medicines that you should be given . And when tumor shrinks then an operation can be possible is in just resection of the tumor even if it is in casing anything. In my case it was in casing my main vein in my leg and they had to remove that as well.
Then you will have to do radiotherapy after the operation.
Suggest that with your doctors abs see what they will suggest.
There are different school some do chemo before operation and others operate before chemo.
Good luck with any procedure and hopefully you will be cancer free. It’s very tough as I have been through it but hopefully you will be strong enough.
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Ivan, you are definitely making the right decision. Its a tough decision but its the best one. I regret that my husband did 3cyles of barbaric chemoterapy and then had his leg amputed. The chances of chemo being effective when it comes to sarcoma in knees and joints is very low hence the amputation is the best available option. Good luck and don’t be afraid!
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Thanx for Rhe answer. I forgot to say that I got 3 Chemoes made before amputation (doxrubicin+ifosfamid). But it didn’t work well. It stopped growing that fast but still was growing. And all doctors said do amputation before it’s too late. Right now after an amputation they ll make some histological expertise of the tumour and I’ll get chemo again. Doctors didn’t speak muck about radiation traetment at all. Once they said it’s impossible because if we give radiation to your nerves and vessels the leg can die.
Nariman said:
Hi I think you should first do chemo therapy and try to shrink the tumor that will be 6 cycles of chemo and medicine is known there are 2 kinds of medicines that you should be given . And when tumor shrinks then an operation can be possible is in just resection of the tumor even if it is in casing anything. In my case it was in casing my main vein in my leg and they had to remove that as well.
Then you will have to do radiotherapy after the operation.
Suggest that with your doctors abs see what they will suggest.
There are different school some do chemo before operation and others operate before chemo.
Good luck with any procedure and hopefully you will be cancer free. It's very tough as I have been through it but hopefully you will be strong enough.
Hi everybody! Thanx for your support and advices. So I got my left leg amputated above the knee with clear margins on 26 April 2016. After examination of my tumour doctors said that chemo before operation had 10% effect. In my home city Samara local oncologist said that it’s not necessary to do chemo after an operation as soon as I don’t have mets. We got alternative opinion from professor Fedenko in Moscow that 6 rounds of chemo (doxorubicin+ifosfomide+mesna) is the way to go. The same chemo I did 3 rounds before an operation. I did 2 rounds so far. After 2nd round I got some side effects: neutropenia, diarrhea, high body temperature 39 degrees C. So doctors decided to reduce dosage of chemo on 30%. Right now I’m feeling good, gained some weight, doing exercises, getting ready for my prosthetic leg, staying positive. Will have next chemo on 16th of August. After 3rd chemo I think to get another consultation from professor in Moscow.
Please comment on my situation. Any thoughts or advices are highly appreciated 
In the US, the conventional treatment with chemo is 6 rounds total but I am not sure what’s the conventional drug amount. I think it depends on the patient’s weight. That would include the 3 rounds before amputation by the way. Doxorubicin has a lifetime limit (you can only get so much) because it can damage your heart. Ifosfamide doesn’t have that limitation though and synovial sarcoma tends to be more sensitive to it compare to other types of sarcoma.
A high temperature while you are neutropenic is very dangerous and requires antibiotics. I was always told to check my temperature while neutropenic and go to the emergency room if it went over 38 degrees C. That was with cipro given as a preventive measure. I had temperature once due to a blood infection with a fungus (candida) and had to get antibiotics by IV.
In the US, a neulasta shot is usually given to deal with neutropenia. It brings the white counts back up in a few days. After a few cycles of chemo, your red counts and platelets may also be low. Transfusions are common in such cases.
Didn’t know about lifetime limit of doxorubicin. Thanx. I’ll ask chemotherapist about that. And yeah, when I got side effects after chemo and my body temperature went up to 39 degrees, they put me in emergency room for 1week and gave me lots of antibiotics and injections to stimulate leucocytes in my blood.