Not the news I was hoping for today.

Hello Fellsider

I am very sorry that you have been given this news after your all clear on the original tumour. 

The cancer is so rare and when it metastasis even less info available. I have read one old case study regarding my spread, but recent stuff non existent.

I have read posts on our forum mentioning spread to the coyccx, connected to APR/ELAPE surgery, but nothing quite like yours.

I have recently joined a Living with stage 4 - Bowel Cancer UK FB page, you might find somebody who has gone through similar diagnosis and alternative treatment.

It's very frustrating that you can't have the immunotherapy added to your treatment, but the chemo drugs you have mentioned are also very effective in the treatment of SCC.

Wishing you all the very best.

Ally 

Sorry to hear your news it is extremely distressing but let's hope the chemo works.do you mind if I ask which immunotherapy drug it was. 

Hope you start the chemo soon and it is effective 

1. Take Care xx

Hello Fellsider 

I am so so sorry to hear this, you must be absolutely reeling with this news, especially after getting the all-clear to now being told that even Sabre is off the table.

The Carboplatin and Paclitaxel chemo is extremely effective in most cases of advanced cancer.  I was stage IV at diagnosis and underwent six cycles prior to any decision for further treatment.  I tolerated this really well but had no idea what might happen afterwards.  The effectiveness was assessed scan-by-scan, and whilst most of the oncologists I saw were kind and compassionate, there was a fair bit of teeth-sucking and shaking of heads all of which which kept me on a huge horrible rollercoaster that had no end.  But I responded well, and went on to have the Nigro Protocol and two lung ablations.  But what is important from what I learned from all of this is that no oncologist can accurately predict anyone's response to a course of treatment.  If you respond well to the Carboplatin and Paclitaxel chemo other avenues of treatment may well be on the table.  I say this not to offer false hope but because in some cases this really does happen.  And as an aside, this chemo is systemic so it may well stop other metastasis from progession.

And in the meantime, I would look at any and every other avenue.  You are fully entitled to a second opinion and I would investigate if there are any trials at all that you would come under and any other immunotherapy that might take the place of Retifanlimab which is awaiting approval.

Fellsider, you must be in a very dark place right now and my heart goes out to you.  Please remember at all times that your virtual friends here on the forum are here to support and put a virtual arm around you to fight alongside you.

Huge hug

Irene xx

I feel for you - I am in a very similar situation. I finished chemo radiation at the end of October. My 3 month scan showed a complete response to the anal tumour and the affected lymph nodes but also showed multiple new liver lesions where previously here had been none. I saw the oncologist today. Too many lesions and spread across both lobes so surgery isn’t an option. No offer of immunotherapy but just the carboplatin paclitaxel option. I too am likely to start during March sometime and they have said 3 cycles and then scan and review. Have they explained th treatment cycle options to you? I was told it’s better to split the paclitaxel across 3 sessions each cycle as fewer side effects that way (so day 1 - carboplatin plus 1/3 paclitaxel; day 8 and day 15 - 1/3 paclitaxel.Then start again day 29.) My prognosis is 20 months! Very hard to get my head round as I feel physically fine. Effing cancer!! 
Sarah x

My treatment plan looks similar to yours. It's devastating isn't it? I really feel for you as I know what you are going through. The speed at which it spreads is awful. Sending you all the strength you will need to come to terms and cope. Martinx

Thank you Irene. As all my previous posts from last year have gone I wonder if you are the same Irene who was so supportive and helpful to me during my first treatment. If it was you thank you.

I believe it is retifanlimab. Thank you for your support xx

Thank you Ally. I know what you are saying about information.  It's frustrating. I do hope the chemo helps. x Martin

Thank you for your reply I hope the chemo goes well xx

Martin, I am the cat (and dog) lady, you had just lost your cat, our family too and my daughter had made "Elmo's garden".  It is still going strong and getting ready for its Spring makeover.

You are in my thoughts xx