Cancer Support thread 88 - virtual rage room currently empty, virtual collective afternoon tea - all welcome!

[LemonDrizzle10]

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I've just had a phone call to book a clinic appointment that was already agreed for Weds - changing it to Thursday. I already have 2 sets of plans Thurs so told him it needed to be Weds & he asked if Thurs is chemo day.

Well, no, but I already have plans & I was looking forward to them. But I need to change them & be available Thursday now 😡 not happy...I know I need to go but still, I don't want to change my plans at short notice when a different day entirely was agreed at my last appointment.

That's rubbish @lucysmam. I am incredibly grateful to the NHS and as I work within the system I know the pressures staff are under. But I often wonder if it would make a difference to recovery, outcomes etc if the system remembered that patients are people who still have lives to lead. Having cancer is such a disempowering experience any way but the supposition that one can and should drop everything to fit in definitely makes it feel worse.

@TopOfTheCliff that sounds absolutely rubbish. I don't pretend to know exactly what you're going through but I would not be happy in that position.

Hi, I have stage 4 melanoma so I'm on immunotherapy for that. I can't say much about how it works for colon cancer but I can talk about my experience. I was stage 4 unresectable, tumours in lungs, peritoneum, spleen, and liver. The one in my lungs were so large they couldn't be removed. I started on pembrolizumab and got sick with liver issues, so I moved onto the combined one (ipilumumab and nivolumab), and I'm on a trial where they do immunotherapy for 4 cycles and then scan and then they hoped it would have a 'major pathological response' and I'd be eligible for surgery and it worked.

I went from having so many tumours to only having one lung tumour that could now be removed and I had that surgery a couple of weeks ago.

As it stands now I have no tumours. I'm back on treatment now, and having some bowel symptoms as immunotherapy wakes up your bodies immune system and you can get autoimmune diseases like hyperthyroidism, then hypothyroidism, type 1 diabetes and bowel symptoms like crohns or colitis. My IBD team has decided I need to have infliximab for my crohns type symptoms. Also the symptoms you can get are not reversible so I'll always need to take thyroxine.

I had my results of the tumour they resected today and it was all dead.

So ive had an amazing response on immunotherapy, yes the symptoms are hard but it's not as hard as chemotherapy, happy to talk more about it if you want :)

I cried this morning when I got my post surgery scans and there is no cancer at all.

That's such great news @CoachBeardsJane and maybe gives hope to others. to everyone struggling today
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@CoachBeardsJane wooo! That’s absolutely brilliant news.
My lovely friend who had Stage 4 melanoma ten years ago was on an early trial of ipalimumab and it worked really well for her but the trial ended and they stopped it. She tried so hard to get it back and entered lots of other trials but nothing else worked as well. I miss her! Things have changed so much in just a decade. It is a game changer for all of us.

So glad you are tumour free now Coach Long may it last. Its really useful to hear what has worked for people as well.

Top That sounds tough. I would go for a dose reduction so that you can do somethings. Its hard but I went to 90% end of Pax and the stats didn't look bad for that. Plus I always think of the stat that if you do 3 to 5 hours exercise a week you cut reoccurrence by 50% and obviously 3 hours will still be far too much at this stage but it likely means any exercise helps and so if the meds are making you really ill it could be counterproductive. That's the grounds I turned the abem one down on, reduces reoccurance by 30% but makes a lot very ill so I thought would reduce the 50% chance and I wouldn't be able to see DS in hospital. Sorry about your friend.

My back ache seems to have largely gone which is good as they seem to have forgotten about a scan or appointment. Still have numbness and light pins and needles so would prefer a check but this has been since chemo.

I had immunotherapy (pembro) for my triple negative breast cancer - combined with the chemo it shrunk my tumour down to virtually nothing and I was lucky enough not to have any of the more serious irreversible side effects. I couldn’t really tell what side effects were due to the immuno as opposed to the chemo.

That’s great news @CoachBeardsJane

i am back to the hospital tomorrow to have a seroma looked at and possibly drained.

@lucysmam that’s rubbish. We already have to forego so much whilst going through this, it’s rubbish not to be able to do the things you feel up to and are looking forward to.

Oh @CoachBeardsJane no wonder you cried, that's phenomenal news

@CoachBeardsJane im so happy to hear your wonderful news!

@CoachBeardsJane that's incredible! It gives lots of people here hope as well.

Has anyone who has had an MRI tell me what to expect? It's Thursday and I'm starting to feel very anxious about it now. I don't think I'm claustrophobic but I also didn't think I was bothered by heights and found out recently, after having kids, that they make me freak out now! I've had panic attacks in the past, not that I went to the doctor about them and I'm worried I'll freak out. I think having an idea of the process in a bit more detail would help, if anyone can.

You take all metal clothes off like bra etc, they usually make you wear a gown,

You lie down feet facing the machine or if a breast mri then face down with your breasts in a hole which feels weird!!

Then they might give you a set of headphones to 'listen to music' which is usually shit or radio 2, you'll also get an emergency stop buzzer to press if you can't keep going.

Take a set of foam ear plug and ask if you can use these in the mri if they don't have the headphones as these helped me to drown out the noise.

Then they'll say what they're doing and that they're just in another room and to press the buzzer if you need them.

Then it'll start and it is loud, lots of banging and lots of whirring. Some mris have something on the inside to look at but that is rare, usually it's just scuffs or the plastic of the tube you can see.

Focus on a single point of something you can see and do steady breathing techniques like in for 2 hold for 2 out for 2 and repeat. I've made myself fall asleep before by doing that.

You might hear a woman's voice say 'take a breath in... hold......... breathe away' or they might not.

You might have contrast which is an injection in a cannula and it's very odd it feels like you've wet yourself but you haven't.

@Crimsonbow Well first of all, try to wear clothing with no metal at all so you don't have to get changed into a gown!

If you're having contrast they'll put in a cannula first. Then you go into the scanner room and lay on the scanner bed, which is it if the machine at this point. In my experience they will try to make sure you're comfortable, pillow under your head and a wedge under your knees so your lower back doesn't become painful. If having contrast they connect the machine that administers it to your cannula. They gave me headphones to hear instructions through, you may have to take a breath and hold it for a short time, or they may talk to you, this all comes through the headphones as the machine is very loud.

Then once you're set, you slide into the machine on the bed and the scan begins. It's not really claustrophobic how you might think. You can't look around or anything anyway as you have to lay very still so I mostly just closed my eyes and I very nearly fell asleep. How long you will be in there depends what they are scanning. I was in for about an hour.

It's a bit weird but not unpleasant at all.

@CoachBeardsJane that's such amazing news!

@Crimsonbow MRIs are really ok. I've had quite a few now. Yours will be pelvic, yes? So you will lie on your back and go in feet first and although most of you will be in the tunnel, both ends are open so it's really not that bad.

They give you earplugs and ear defenders and may ask if you want music. The machine is still pretty loud but for some reason I find the sounds quite meditative and gave been known to nod off!

Depending on exactly which bits of you they are scanning you may get a cannula and a "contrast" injected in. That normally happens towards the end. My last pelvic MRI took about 35 minutes.

Hope that helps but let me know if you have any more questions.

I just had mine -will try to write a post later. I found it amusing but I'm doing a lot of dark humour at the moment.

I actually found the sounds hypnotic after I got used to them.

No make up, especially mascara

@Ikeameatballlunch I had no idea about mascara!

I did find it amusing when I had BC and they stuck cod liver oil capsules on my nipples.

@TwigTheWonderKid What?! Why?! 😦

yes - I had several visions of what on earth they meant when they said that!

It actually specified no mascara in the leaflet. Sometimes has iron in apparently?!

They show up well on MRIs and they need to know where your nipples are.

They just tape them there ....!

You mean like, full ones?! Or are they empty and your nipples wear them like a little hat? 😶

that was my second thought after "do they rub the oil in?"

No they're full and taped on the ends of your nipples

Well I'll be... I never knew that!

@Timeforchangeithink I have stage 4 ovarian cancer after my cancer diagnosis I had to come off infliximab for Crohns which I had been on for 7 years. Infliximab is a type of immunotherapy and my experience with it was positive.
After first line treatment I was on Avastin which is also a immunotherapy drug. I was clear of cancer to a good 18 month's.
I finished treatment for peritoneal reoccurance in April and I'm now on Niraparib which is a parp inhibitor.
I remember the early days of feeling terrified as you explained and a lot of the time I still feel terrified if I'am honest.
I've been incredibly lucky with my oncologist he has always pushed for the best treatment. What I really appreciate been very straight and honest with me my treatment isn't going to be curative and is about managing my time. Dr W tells me to forget him and go live my life that's what I try to do.
The side effects of all the meds they have us on are terrifying but you have to remember that although they have to list them all you won't get them all. Your hospital team will always adjust meds or add in others if needed.
With the advancements in cancer treatment and research it is quite possible to live well with cancer.

@CoachBeardsJane that's amazing news Hooray for immunotherapy xx

@Lisdeflores
Thanks - I have peritoneal cancer (also stage 4) - think it’s treated same as ovarian.

I was feeling a bit negative today - but your post has reminded me different treatment options are available. I am only at the start - only had two chemos - due to have six in total and the surgery.

Hoping to have a decent result, but today was worrying about recurrence (Now realising I was worrying about that - and I haven’t got rid of the original tumour yet!)
Talk about fast forwarding my life!

Anyway, thank you x