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.
Hi my name is Derek I am 58 years old I'm living with malignant melanoma and 3 brain tumors. 2 weeks before christmas I was having my first radio therapy and took a stroke the same Friday evening and didn't find out it was a stroke till the following Tuesday. Whole left side now paralyzed still living at home with home care help and my daughter Jayne and my wife olive. 4-6 months to live and very hard to live with. I was a cook for 31 years in the army. My last while has been tough great family support. Fighting cancer 17 years.
Hi I'm new to the forum. Not sure if Im on the right one, so Ive posted this to a few....My husband was diagnosed with FAP over 13 years ago and had an immediate preventative subtotal colonectomy with IRA. Wondering has anyone out there also been diagnosed with this very rare genetic condition and if so, if they'd like to share?
Hi, I wonder has anyone experience of this drug, I have been on it for about 6 weeks and while I have no dramatic side effects I feel generally unwell - tired, low mood, aches and pains. I know it's important to keep taking it but I would like to know if you get used to it and feel better over time
Does anyone know of any support group, anywhere in the country, that is specifically for people with melanoma? If not, is there anyone out there who would be interested in getting together or organising something?
I have two daughters, 14 and 4. My 14 year old knows I have cancer, but my four year old doesn't. I explained that my shoulder was sore when I had my mastectomy, as I am still not able to lift her.
Baldness is looming at the end of this month, as I start chemo next week. I just wondered how those of you with smaller children, explained your baldness to them. I don't think I want her to know that I am so sick that my hair fell out, but on the other hand I want to be as honest as I can be with her as well.
I would be grateful to hear what worked for some of you.
Hi, my partner of 25yrs has been diagnosed with advanced bladder cancer 5wks ago he is 47 yrs old ,we were told it was inoperable and palliative chemo his only option.The cancer has spread to his pelvis and has also blocked his right ureter causing damage to the right kidney,and is sticturing his lower bowel he has a temporary catheter in place draining his kidney.He had his spleen removed after an accident when he was 14 has been fairly healthy but over the years has been very ill with minor infections.The oncologist agrees this is an issue but still thinks chemo will help and said J would have only 6months without chemo, we live 60 miles from the hospital treating him and my major fear is that without a spleen he has absolutely no back up 4 infection .He agreed to the chemo when we saw the consultant but now is thinking of refusing.Is there anyone who has experience of having chemo in this situation?We have less than 2wks before treatment due to start.xx