Synovial Sarcoma behind left knee, unsuccessful chemotherapy and low looking at amputation half way up thigh

Hi Pam04 

Sorry no direct takers on this; my wifes Leiomyosarcoma was (probably) in her womb and so her surgery was a hysterectomy.

When she was in the cancer ward once someone in the ward was scheduled for double amputation and I was amazed at how positive she was.

In Oxford we do have a really good prosthetic department so quite common to see people with all sorts of amputation solutions.

Of course being fit at a time like this is really positive.

Hope perhaps someone with more direct experience comes along but want you to know you had been heard.

<<hugs>>

Steve

Hello Pam.

I first want to say I am so sorry about this devastating news. I have the same cancer (synovial sarcoma grade 2) on my left foot. I was given three options (radiotherapy, surgery and radiotherapy and amputation) It really depends on how big your tumour is and where is it located. I was given the options but was told by my surgeon that option 3 (low knee amputation) would give me more function and mobility for my left foot with a prothesis.

I am very young, age 25 and a teacher. Therefore, was not comfortable to have an amputation (even though doctor said it will give me a better function the cancer can still come back). I weighted my options and thought I have trust in my God that everything will be okay. On July 10th I had the surgery (tendons were taken out and some bones making my foot to drop - I have lost the mobility to move my toes up) and On 24th July they reconstructed my foot (a skin flap - took some soft tissue and muscle from my thigh and transferred it to my foot). I am now at home healing and cannot weight bare for 2 months. I am now waiting for my radiotherapy to start once foot is healed. However was told I was able to walk and down the line I am able to have a tendon transfer. My margins are clear and the cancer has been removed.

I think if you have the options available to you - you should pick  the option that will be best suited to you. Doctors need to give the worst case situation just for legal reasons  (I was crying each time but I had to follow my heart and think about what option I would feel comfortable with). I also think every option has that possibility that the cancer might come back so I thought I want my foot therefore went with the option that is best suited for me.

I hope this helps my lovely xxx 

stay strong and you got this !! 

Hello Steve 

Thank you so much for your message. It means a lot. Hugs and hope Pam 

Hello Bakri

Thank you for your message. You are so brave and amazing. Synovial Sarcoma is a real life nightmare. I had three rounds of very heavy chemo but the lump has not shrunk, in fact it has grown a bit.

It is right next to my vein etc in back of knee. It sounds like you have complicated surgery similar to one of my options. The surgeon seems more confident about the amputation - half way up my thigh. It is a lot to think about.

I hope you continue to make great progress getting your foot functioning. It sounds like you are well on the way. 

Thank you so much for writing to me, it means so much. 

I have to wait and see what the vascular team say and no decisions will happen for about four weeks.

You certainly have got this! 

Sending lots of love and strength

Pam xxx

Hey Pam,

Thank you so much for your message x 

We got this!! I will pray to God for you my lovely xx 

Hope it all goes well xx 

Hi - I’m so sorry to read this. Have you heard of AVA6000? It’s a trial drug like doxorubicin but I have little more information on it beyond the discussion my husband has had with consultant. My husband is due to start it soon but I can’t find much online. Thank you and sending you my thoughts x

Hi both, I can tell you a little bit about AVA6000: It isn't a drug 'like doxorubicin' it is doxorubicin but attached to a substrate which renders it inert until it finds something called 'fibroblast activation protein alpha' or FAPa for short. Many solid tumours express high elevated levels of FAPa and so the theory is that the doxorubicin is only unleashed at the site of the tumour, bringing with it the prospect of vastly reduced collateral damage elsewhere in the body (usually the heart with doxorubicin). Your team should check your FAP levels if they haven't been analysed before now, and then only you alone can judge the risk reward balance that the trial might afford. I suspect people on the trial will be bound by strict confidentiality,  so unfortunately you are unlikely to get a steer about how other patients might have (or even continue to) benefit from the trial so far. I can say that a press release by the company responsible for AVA6000 suggested some people from the 6 groups (so far) have continued to receive the trial drug as they have not progressed.  Be aware that this could be for any number of reasons, and enter into any trial only if it feels right for you. I'd certainly ask if accepting a place on the trial closes any doors with respect to current options. 

I wish you the very best on your journey from here.

Thank you so much for taking the time to reply. I had to check what a substrate is. Does that mean I won’t be able to find out how people are getting on? I can’t understand why that is personally (surely these forums are to help us make choices?) but fair enough I guess. Does not progressed mean it is working for them so far? Is there a press release or any other info you can send me which is public? Do you know when I can expect to hear more (as my husband needs to make a decision soon)? Thank you again x

I'm not privy to anything regarding the trial, so everything I know is In the public domain

https://avacta.com/successful-completion-of-fifth-dose-escalation-in-ava6000-phase-1-clinical-study/

The trial is a "phase 1a" which means that the scientists are looking only at safety and tolerability (I.e. clinical benefit, or efficacy as they refer to it, is not, at this stage, what they are looking for. That said, they have been looking for what is called the maximum tolerable dose, bit they haven't found it yet, which implies that even at high doses, they are not witnessing adverse events, encouraging at least. Talk to your husband's oncologist to see what, if anything he can tell you.

Thank you

we’re speaking next week x