Living with cancer
posted by Lambo
07 February 2020

Drug reimbursement, how does it work

Last reply: 1 month ago

Hi, I was diagnosed a long time back with head and neck cancer and it has metastized, however, it was not squamous cell carcinoma but clear cell carcinoma.
My understanding is that this cancer type, rare as it is, is more commonly found in the kidney.
I constantly review different treatment options out there but thus far nothing has worked for me.
Latest update I have found is that a combination of Nivolumab (Opdivo®) with ipilimumab (Yervoy®) seems to have best response for RCC. (Renal Cell Carcinoma)
My query is this, looking at the HSE approved list of drugs, this combination is approved for use in patients with Renal cell carcinoma, and it's also approved for head and neck patients with squamous cell carcinoma
So, my head and neck is not squamous cell carcinoma, so I guess that rules me out on that basis, and even though my cancer is more associated with RCC, I am also ruled out of this combination treatment because my cancer is head and neck even though it's more commonly part of RCC.
Can someone please advise what are my options here and if I have this right.
I have tried taxol and platin, that combination didn't do anything, also tried sunitinib, which also did nothing, I am now on Xeloda.
Should this latest treatment not do anything then I want to raise the possibility of Nivolumab (Opdivo®) in combination with ipilimumab (Yervoy®) with my consultant, but want to know if it's reimbursable for my particular case.
Would appreciate any help from anyone out there who might know more on this subject.



commented by Cancer Nurse
17 February 2020

1 month ago


Dear Lambo,


Thank you for posting.  I’m sorry to read of your diagnosis of head and neck cancer, it is understandable that you want information on the available treatments.  You would need to speak with your consultant to discuss your treatment options and if nivolumab and ipilimumab are an option and if the combination would be reimbursable for your case.  The oncology pharmacist in the hospital where you are having your treatment may also have more information on this subject.  The Nurseline is available on 1800200700 if you would like to speak with a nurse for any further advice or support


Kind Regards


Cancer Nurse

commented by waters68
18 February 2020

1 month ago

Hi, I also have metastatic head and neck cancer, my consultant has suggested pembro and chemo (3 different types) concurrent. Unfortunately the pembro isn't covered for reimbursement. It's my understanding that pembro and nivolumab is covered "2nd line" meaning after trying chemo first, but I may be wrong about that. Like Cancer Nurse says above, your consultant will be able to help you.

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