Stage 4 cancer... ? incurable? Thread #2 is here. In memory of our inspiring, lovely mowly77

[Tilllly]

New thread
All welcome, reluctantly

Unfortunately there is only one specialist nurse at my hospital for my cancer and she's in training. She's also the one who told me there were no clinical trials for my cancer which I later found out to be untrue.
However the general Oncology nurses are mostly wonderful and do try to help me with the more basic questions I have and also are very accommodating when they can be with changing appointment times.
However when I read of others experiences with their Oncologist I can see I'm just not getting the same.
My Oncologist is a lovely man but he's very basic if that makes sense.

@GoldenDog1 Have you considered asking for a different oncologist? I did as I really didn't like the attitude of my previous one. She was fine for my Stage 1 diagnosis and drug regime, but now at Stage 4 I felt I needed someone I had more confidence in, who did more than just dispense medication. You can request a change via your GP. I got some great advice on who to ask for from my local Maggie's team. However I have a very common form of breast cancer and I appreciate it won't be the same for everyone x

@SewingBees yes I will be asking for a second opinion but it's a bit difficult to change completely because of my location.
There are only two that deal with my cancer and they are not even based in my local hospital and only visit one morning per week.
I've been told the other one isn't much better.

I'm prepared to travel to get a second opinion but it might be more difficult on a regular basis as I'm reliant on people giving me lifts.

We are very limited here.
We have a good size hospital but anything out of the norm and we have to travel elsewhere.

Hi, new to this thread, I hope is ok to
post here as I am not stage 4 but my daughter is.

I am trying to research Irinotecan, also known as Campto. I have read all the usual sites but am trying to find patients with real experience to talk me through the side effects. She has already had 15 rounds of various different chemos so not naive about side effects but trying to weigh up/gather information to help her decide whether to accept this palliative chemo or decide to stop treatment. She is only 13 so I need to help be as informed as possible.
thank you. I tried to find out without encroaching on this thread but have had zero response.
best wishes to you all.

@WrenNatsworthy So happy to hear you finally got that pain under control and were discharged. There is nothing worse than ongoing pain and no one really listening. Why it takes the palliative care team to finally sort things out, I have no idea, nor why it seemingly takes forever to get them involved!

Ive got two weeks with no hospital appointments and i feel like I won the lottery. Now sitting in watch and wait land, again, though with pain better managed to I can start moving more and exercising, etc. Hubs is not handling things well and looks tired, saying he 'just needs more sleep' even though he is sleeping a lot already. I think he may be depressed - he was in the room with me for my ribociclib consult and after said he never realised just how powerful and scary some of these drugs are (as a palbo veteran this is all old hat). He's agreed to give a support group a try at least, but what we really need is some time away at a beach!

Her life is just so hard...

Time away at a beach sounds wonderful.
I'm away for a few days next week but not on a beach or abroad. The weather isn't looking too promising next week but I don't care as I have a week off chemo and apart from one teeny tiny appointment on Monday morning for a PICC line clean before I go I have no other appointments and that feels so nice.

I hope your DH can get the support he needs.

Now that is the life.
She looks so peaceful.

Snoring gently @GoldenDog1

Think I'll join her lol

@ScaredOncologyMum If anyone on here has experience of that particular treatment I'm sure they'll let you know. I know it's used for colon cancer and I see it's also used for a variety of other solid tumours. I do have colon cancer but I'm on FOLFOX rather than FOLFIRI so no experience except for being told it can further worsen diarrhea which is already an issue for me with an ileostomy, so they'd rather have me on Oxaliplatin despite it being a nasty little bitch of a drug.

I don't know whether you've had any luck in the Children's cancer threads or the Life Limiting Illness threads, if not you may have to seek beyond Mumsnet. There's also a long-running thread called the Storm, in the life limiting illness section, though they state it's mostly for partners.

As you're aware we are a support thread for patients with incurable cancer so this is not the best place to seek support if you are not the patient. Many on here are mums and will empathise with your situation, but we are not set up to provide support for family members. Also, there aren't a lot of regular posters and so there may not be anyone on here with specific helpful experience.

Does googling the drug name with 'forum' or some such bring any helpful results at all? I just did and got a lot of results, not necessarily exactly relevant to your situation but you may find something useful, here are the first few, apologies if you've seen it all before:
https://cholangiocarcinoma.org/db/topic/experiences-with-irinotecan-folfiri/
https://community.bowelcanceruk.org.uk/topic/7582-irinotecan/
https://community.bowelcanceruk.org.uk/topic/642-irinotecan-and-5fu-your-experiences/
https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/231222/irinotecan-chemo-drug

Always bear in mind that not every patient will get every side effect so while research is helpful and it's always good to hear experiences, it's not necessarily a good predictor of what your daughter will experience.

In real life are there palliative doctors or nurses available to talk to you? They might have helpful information and advice and be able to talk you through the risks and benefits, even if it's not the patient experiences you want to find.

Also, what do the oncologists say? If they feel it is worth treating her it's likely because they have hope that she can have increased length and quality of life so that's something to bear in mind. In my experience of oncologists, if they felt they couldn't be of any further help to her, they would say so.

Best of luck with your search.

@Tilllly Oh she's a biggo doggo now! Growing like a weed, bless her. Getting a bit long in the nose, it's that hidden wolf ancestry... see if you can teach her to howl! Make moonlit nights a bit exciting. Though if she turns out to be a werehuman you'll have a tween girl on your hands (part time anyway) so it's obviously very dangerous.

Thanks @LuciaPillson . I have indeed tried to find out in the Children’s Cancer and Life Threatening sections but to no avail, hence hesitantly posting here. Your response is helpful as I did not know FOLFIRI included Irinotecan. The paediatric treatments are just the adult ones dose adjusted and specific research is limited. You may think you don’t have many regular posters but this is much more active than the children’s cancer threads. The tip re using ‘forum’ is useful too. I will be discussing further with the team at the hospital but helping a child make life or death decisions is something that requires a great deal of research and I am doing what I can. It isn’t used in SOC treatment in paeds so far as I know.

@LuciaPillson
You are bonkers 🤣🤣🤣

And you are somehow... only now... figuring this out? 😁

@LuciaPillson
I'm playing the cancer card 😉

I want a cancer card I'm organising a raffle and the cancer card may be useful when I'm asking for prize donations!😂

@Tilllly The all-powerful cancer card! I can't tell you how many conversations I begin with 'I have cancer, and....' just to keep the fuckers listening and on their toes. The big guns 'I'm DYING of CANCER, and...' can then be saved for more drastic situations or when you are feeling just that little bit pissed off.

Sometimes that last one is just a thought whilst glaring daggers at people as I toddle about with my rollator: 'I'm dying of cancer, so don't run your mobility scooter into me at top speed or I will break you,' for example. Honestly, give a person one of these dreadful vehicles and they become the terror of the sidewalk, they would mow down an infant child holding a puppy without a shred of remorse.... loads of them round here too, you take your life in your hands when you venture out. /off topic rant

On the subject of playing the cancer card, how do I go about getting a seat upgrade on an international flight? Obviously the first step is to overcome my British sensibilities and stop apologising for merely existing...

My appetite has completely gone. I'm just not hungry

I've lost 5lb in 2 weeks

I feel full after a few mouthfuls and queasy if I try to eat more

I'm making food I like, and high calorie like pizza and lasagna but I just can't eat

Any ideas?

@Tilllly have you tried McDonald’s milkshakes? Very high calorie and easy to eat/drink. This helped my friend who was struggling.

(Not stage 4, I followed this for my mum but can’t turn notifications off - sorry!)

Thanks, might try but gip at milk...!

I'm not sure why my appetite is so rubbish

@Tilllly I was advised that rather than trying to eat big meals ,small and often can be easier to manage. Enriching the food you can manage can help for example if you like yoghurt add
cream to it. Also you can add a spoon of olive oil to pasta to increase the calories. Also switch to butter and whole milk. X

• Include high calorie, healthy foods in every meal such as nuts and seeds, avocado, oily fish, olives, eggs, full fat dairy and coconut products.
• Include nutrient-rich homemade smoothies daily, using coconut or full fat milk, ground nuts and seeds, fruit.
• Add butter or olive oil to cooked vegetables.
• If nausea is reducing your desire to eat, try sipping peppermint, fennel or ginger tea.
• Have high calorie snacks to hand at all times such as olives, avocado dip, hummus, nuts and seeds or full fat dairy or coconut yoghurt.
• If your appetite is reduced, try having small portions more frequently as large plates of food can be off-putting.
• If weight loss persists, seek the advice of a health professional experienced in supporting people with cancer.

I took these guidelines from the Penny Brohn site ( I would of done link but I'm a computer twat!)

Thank you 😌