Immunotherapy

Hi Yoda1314

I think immunotherapy works best on people with MSI microsatellite Instability. Quite often suitable for people with lynch syndrome or some other mutations . It would really depend if he has the mutations . Certainly a few people seem to have accessed funding . Sounds an interesting development of a combination . Certainly other primary cancers use it that way .

Do you know anything about your husband’s cell type ?

Take care ,

Court 

We will be seeing the oncologist tomorrow.  His recent scan results aren't too good, the nurse wouldn't tell me the details,  he's msi high so I was wondering if we could push for immunotherapy as 2nd line treatment and wonder if it could be rejected? Getting very desperate right now

Ok I understand . Have you followed phoebeb21 and her recent success with immunotherapy. 
https://www.nice.org.uk/guidance/ng161/resources/interim-treatment-change-options-during-the-covid19-pandemic-endorsed-by-nhs-england-pdf-8715724381

You might like to have a quick read of this document. It gives guidance on interim funding for immunotherapy during covid ! Please have a look at the dates . If the oncologist agrees and it is successful it looks as though they would continue funding ! You might like to print this out and highlight your concerns about covid ! 
Sorry to hear his scan results are not what you hoped for . However if he is MSI high immunotherapy might be worth looking into . It’s now first line treatment for MSI in America I think ! Some good successes .

Take care and you might like to print that document off and take it with you tomorrow.

Court 

Thank you court you've been very helpful, I'm sorry if my post sound impatient. Gosh I sound rude and desperate, I'm so sorry.  I just want to gather as much info so I can be as informed to ask the oncologist questions.  I've read Phoebe's posts, they are so encouraging,  there's not much information on others who have tried immunotherapy so I couldn't find anymore.

I hope the oncologist will listen to us and allow us to choose immunotherapy as next treatment.   do you think there would be any reason if it would be rejected?

No need to apologise! It’s a tough time ! I am honestly not sure but remember you can always ask for a second opinion from an oncologist you know Is using Immunotherapy and see what they think and how they fund other patients . It’s not widely used in the U.K. out with clinical trials but some are managing it so might be worthwhile asking them how they are achieving it . Just a thought ! I have been familiar with it more in the USA to begin with .

You could let them know you are familiar with the Nice guidelines for interim funding too! Did your husband take the covid vaccine ? 
Court 

Thank you @court for being so understanding.  I remember on our first meeting the oncologist did mention immunotherapy could be an option, just hoping he will agree to it tomorrow.  I'm scared of the delay in asking another opinion will affect my husbands condition.  I did speak to his key worker nurse and asked if he could access immunotherapy,  she checked for me and said yes. But I guess it's also down to the oncologist too.

Yes he's had his covid vaccine, both doses back in February. Will this affect treatment?

Thank you for your tips I will try for my husband and let the oncologist know what I'm familiar with.  I won't give up on him. 

Good on you Yoda1314 sounds as though they are  sympathetic. They will want him to do well too and if they can access it I am sure they will do their upmost !

No it does not matter at all about the vaccines . This funding is just during covid so just thinking out loud really .

Given they have raised it I think that’s a positive !

That would be very good news indeed .

Hope it goes well tomorrow.

Court 

Hi Yoda1314 Just logged on quickly as can’t sleep and saw your post. My Oncologist at first applied for me to have the combination Immunotherapy Ipilimumab and Nivolumab. He applied for funding for this, but the combination was not approved as Nivolumab had just become available on its own on the NHS as a treatment for colon cancer with MMRd and micro satellite instability cell type due to COVID as it was less likely to cause more hospital visits.

The single immunotherapy has less side effects and I think he said there was only a slight percentage difference in success rates. I was willing to take a chance on the side effects to be honest but the single agent has worked well for me. 
He has also told me about a different targeted therapy that will soon be available on the NHS but I don’t know the name. He is going to do some research into whether this is compatible with my cell type, just to have as a back up if the Nivolumab stops working. He says he doesn’t think I will need this but it’s good to have there. He also said in hindsight he would not have waited so long to try the immunotherapy as it was my 3rd line treatment. 
I hope it’s approved for your husband, we did feel very despondent at Christmas when I was told the chemo radiotheraphy hadn’t worked.

It seems a gentler treatment than chemo. It has its own side effects but the ones I have are “do able” 

Good Luck tomorrow! I will be thinking about you with my fingers crossed.

lots of love xxx

So great you popped on phoebeb21

A timely response for sure ! 
Court 

has also managed to access immunotherapy and might be good to hear about funding too!

Take care everyone .

Court