3rd treatment failed

Jinnie, I feel so sad reading this.  I completely understand your devastation and hope that you are accepted on the clinical trial.

Please keep us up-to-date and a huge hug from me

Irene xx

Jinnie, I'm just devastated for you. I'm so, so sorry. 

I think I'd grab the clinical trial too at this point. But I doubt any of us really know what we'd do until we have to wear those shoes.

You are in my thoughts and my heart. Please keep us updated.

Hugs

Suz

Hi Jinnie

I’m so sorry to read this . My cancer has progressed twice during treatment too . The first lot of chemo radiotherapy ( tumour gone but not before spreading to lymph nodes and liver ) then I  had 4 rounds of DCF chemo which didn’t really make a difference and there was more progression, so I was sent for a clinical trial ( in Toulouse - I’m based in France) 

I spent 3 months going backwards and forwards for the trial tests ( bloods, ECG, more biopsies scans) , was finally accepted and then the night before I was due to start , was cancelled because the scan showed the lesion on my liver was too big for their parameters . Absolutely devastated! The trial was immunotherapy with or without a new vaccine targeted at hpv cancers. I had high hopes for it. 

I’m now on chemo  again , Folfiri and my last scan in June showed the cancer had stabilised with some regression. Just done another 5 rounds of the same chemo and having a scan again next week

I would go for the trial, but ask if there is any treatment in the Interim, if the eligibility tests are likely to take awhile. I felt like I’d wasted 3 precious months  (with no treatment ) . 

I personally would still consider a clinical trial, especially if it’s immunotherapy. Where is the one that you are considering based if you don’t mind me asking ? 

Wishing you all the very best and sending a big hug. Xx

Hi Elf66

I'm so sorry to read that you  have been through failed treatments too. 

I'm in South Wales in the UK.The Trial is running at the local Cancer Centre i attend.

Thanks for the advice about how long the process may take as like you I would want to waste 3 months waiting. I will make sure this is one of my questions on the 1st app. 

They offered me another chemo or Clinical trial. he said he didn't want me to become unwell as they wouldn't accept me on trial or the possibility of the trial ending. 

Best wishes for your next scan, hope it continues to regress and stabilise. 

I'll watch for your updates. X x 

Thank you Jinnie and wishing you all the best with your trial . Keep us posted xx

Hi Jinnie ,

I’m so sorry to be reading that your recent treatment hasn’t been successful. I think in your position I’d go for the trial also. Although for different reasons to your own I was also involved in a clinical trial for my treatment & I’ve a friend that was invited into an immunotherapy trial for a particularly aggressive malignant melanoma diagnosis who is presently living cancer free! 

Sending a ton of healing thoughts your way.

Nicola

Hi Nicola 

I've just had the paperwork through for the Trial. 

It's called Target. 

They look at DNA and genetics of the cancer and send out Nationwide to see what best treatments suit it if any.  

Is this what you and your friend trial did ? 

I'm a bit naive on what I to expect. 

Hi again Jinnie ,

My trial was the PLATO trial, this particular trial from what I’m aware is aimed at trialing different levels of radiotherapy tailored to different stages of anal cancer so it’s a treatment based trial if that makes sense whereas the trial you’re being offered sounds as though its diagnosis lead then the treatment is sought based on the results gained from the DNA/genetic results of your cancer? (this makes complete sense in my head but not sure if it’s translated well onto the page!) I’m not completely sure of the name of the immunotherapy trial my friend was involved in for her melanoma to be perfectly honest. 

Don’t think of yourself as naive, it’s so much to get your head around, there must be so much information coming your way right now & decisions to be made, I’m sure I would be feeling the very same way. 

Sending virtual hugs.

Nicola 

Thank you Nicola 

That very much makes sense, thank you so much for explaining that to me. 

I've got to stay off any treatment when they investigating and sourcing possible/ suitable treatment. Bit daunting, but as my cancer been growing on chemo I got to give this a go! 

Your right it's so much to get my head around and I'm exhausted, I need something to give me hope right now. 

Hugs   recieved 

Thank you Jinnie