NAL-IRI / Onivyde chemo

Hi Antonia 

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

Wishing you and your mum all the best

I joined this forum  in the hope someone can tell me how the treatment  went

Hi MrSky 

The best way to get people to share their treatment experiences with you is to either start your own post asking people to tell you about their treatment experiences, or look at people's profiles by clicking on their username or profile picture.

I had my second biopsy  of my.pancreas this week. It looks like.the central area.of my.pancreas is becoming necrotic  ..I'm 79 fairly fit has anyone  had part of their pancreas or any other treatment  for this.

Atm it's in the biopsy report which is being sent to my consultant.  

Hi MrSky 

I know how difficult it can be waiting for the results of biopsies and then a treatment plan.

I don't know if 

MrSky said:

anyone  had part of their pancreas or any other treatment  for this.

as I'm not a member of this group

To find out you need to start your own post, as currently you're replying to a post about chemotherapy.

To start your own post click on the box with the wording '+ Create new post' or '+', depending on the type of device you're using, on the home page of this group. You can read more detailed information on starting a new post if you click here.

I hope this helps but please get back to me if you need more help on starting your own post.

I've seen this is an old post. I wondered if you tried this medication in the end, and if your did, what it was like.?

My husband is currently on it , having just had his second round, it's having far more side effects than anything else he's had and really impacting and life quality. It would be good to hear from others.

Best wishes

Hi, I was asking on behalf of my mum and sadly she never had this treatment. It was offered by a private consultant as 3rd line chemo, but it wasn't supported by her NHS doc as she thought it would be too toxic and not effective enough. 

How is your husband doing? Is he having NAL-IRI through the NHS, he has had other treatment? Sorry I can't be of more help with this but happy to try and answer any other questions you have. Antonia x

That's very kind of you. Sorry it wasn't if help to your mum. 

It's his third line of treatment, he's had 12 cycles of folfirinox, 3 months of gemcitabine capecitabine and now is on Onivyde/ 5FU/ LV. He isn't having the NAL component, but he has done the equivalent of that I guess with the folfirinox and had platinum toxicity and quite severe neuropathy as a result meaning doctors were trying non platinum derived therapies.

It's offered through his private insurance, early indications are it's failing badly with urgent scans booked in a couple of weeks, but it's by far the most life affecting if the chemo regimes he's been on. He's absolutely wiped out, can't really do anything for 11 or 12 or if the 14 days, fatigued, exhausted, confused and suddenly seems frail which is a direct result if the chemo. It's very difficult. It's not a pleasant regime. The impact was a shock as none of the other chemos hit hard and fast in this way. It's hard knowing what to do with/ for him, I'm dealing with quite a young child so it suddenly feels like I've got two small children not one. I was looking for anyone else who'd tried onivyde to find out what their experiences were and if it gets any easier- not that the whole thing gets easier if course. 

My husband has unfortunately a rare form orlf pancreatic cancer ( st 4)so it's even more unpredictable. None of its easy, is it!

Thank you so much for taking the time to respond to me. X

Maybe reach out on American support groups as I think NAL-IRI is more commonly given out there?

My mum was offered palliative radiotherapy as an alternative but unfortunately she was at a point where the cancer was moving so fast we weren't able to keep up with it. Maybe see if that is an option for your husband if chemo is too toxic? My understanding is that the side effects should be less severe than chemo. 

The nurses at Pancreatic Cancer UK phoneline are absolutely great if you have any questions. I rang them probably every fortnight when my mum was ill and they are so knowledgeable and supportive. They also run whatsapp groups to support carers which I find useful to be a part of, even if it's just to vent to others going through the same situation x