Carcinasarcoma dx

[Anastasia74]

Good afternoon ladies just been for my appointment and found out my tumour was a Carcinasarcoma. I was staged at 1c2 almost 2 years ago. I would love to hear of any ladies dealing with this. I am in shock as I thought I was low grade.

Thankyou

[Lindaura]

This is a form of cancer I was not originally familiar with, but have read a bit about it and your staging sounds promising.

This is a VERY rare type of cancer with seemingly few treatment options.

How has your treatment been?

How are you doing right now?

Has your Oncologist given you a plan along with this surprise diagnosis?

I have discovered that there is a trial coming up for your cancer, not recruiting yet:

clinicaltrials.gov/ct2/show...

Please check it out and any others that might be beneficial.

I wish you the best of luck,

Laura

[January-2016-UK in reply to Lindaura]

This trial is very interesting Laura. Is the first I’ve seen that is restricted to carcinosarcoma although we are allowed to join some, but not many, carcinoma trials. The phone contact details are French numbers and the company name has a website (all in French). Interestingly if you search for it using the U.K. as a location it doesn’t come up, but I’ve also checked using the US and France as locations and neither come up, so it maybe that the search facility hadn’t been filled correctly. It would appear the only way to see this trial info is not to put a location. I’m going to see what I can find out as they are looking for 196 recruits which might be difficult if it’s Paris alone, given the type is quite rare. I will post what I find out (going to ask Mac/27, one our French speakers to call them for me).

Helen

[Lindaura in reply to January-2016-UK]

I will try to find a better gateway tomorrow using my computer.

Best wishes,

Laura

[Hidden in reply to January-2016-UK]

Finally had a look at this. The Academic lead is based in Lyon, the other contact is a pharma lead of a research group. It does indeed say multicentric without specifying where and it hasn't started yet.

Shall I write to them for more info about location and start date?

[January-2016-UK in reply to Hidden]

I reread it and it excludes previous anti-PLD1 treatment (which the avelumab trial is). I printed it out to ask Dr K to plead my case since I had such a good response but I also need to ask her why this combination of drugs will work for carcinosarcoma. I’ve left the print out at home!

I’d course, I’d have to leave this trial and may end up only with chemo.

Helen

[Hidden in reply to January-2016-UK]

The thread Ronlitber's been writing about how combinations seem more effective than single agents might be worth bearing in mind. Won't do anything unless/until you ask me to, then.

[January-2016-UK in reply to Hidden]

Hello Chris,

Would you mind writing to them and asking if they will have any locations in London and where?

I'll take my print-out into the CRF tomorrow also but I don't think Dr K is in on a Thursday. I would like to know why it's thought this particular drug combination will be effective for carcino-sarcoma and as it's Phase 2 and 3, there must have been a Phase 1, but I can't find it. Presumably phase 1 results must have been at least as good as chemo. Of course, it maybe however suitable I am for it, having had a PDL-1 trial, I just will not be considered. I'm due another CT-scan in January so I should have a good idea if this trial I'm on is working or not. And if this target lesion shrinks, I won't have sufficient disease for this new trial anyway. But, I will have in time, I'm sure.

[January-2016-UK]

I have ovarian carcinosacoma and was diagnosed just nearly three years ago stage 3c. I wonder why you weren’t given the diagnosis at the time. I read all ovarian catcinosarcomas are utomatically grade 3. Is there perhaps doubt regarding your diagnosis?

There are a few of us on the forum and doubtless we will all be in touch.

Welcome!

Helen

[Tesla_7US]

Please get a second opinion. A fresh set of eyes and talent can help. There's just no reason for your doctor to not have TOLD you the complete diagnosis. Find another doctor who will communicate truthfully and accurately with you.

[Anastasia74]

Thankyou for your replies - yesterday was a hard pill to swallow. The reason I didnt know what I was dealing with is because my mother passed away suddenly on the week I went into hospital back 8n December 2016 so don't remember much about those months - devastation was not the word and I continued to not listen and switch off and was diagnosed with PTSD so had sessions for that. So not the doctors fault in fact I'm glad i didn't know earlier the full extent of things.

[Btte]

Hi I was diagnosed stage3c carcinoma sarcoma in July 2012, still battling on. Love Bridie

[Anastasia74 in reply to Btte]

Thankyou that gives me real hope this morning X