Cancer Support Thread 97: support for those diagnosed and going through treatment

[LiliJilliBobs]

Cancer support thread 97: support for those newly diagnosed and /or undergoing treatment…..
Thread 96 is pretty full - here’s a new one

@Ventress oh god loosing our dog was horrendous. You will process it , perhaps just get through this treatment first 💕 None of us felt ready to go through that sadness again with another dog but when our little gangster turned up needing a home it was forced upon us and perfect ! plus who knows maybe he’s a reincarnation of our boy seeing as he was outside and ran in and hid under our sofa exactly two years later ( I don’t really believe in stuff like that but who knows?) Having spent the day in and out terrorizing whatever is in our and the neighbours back garden he’s now happily sleeping on a blanket on the chair opposite me as we speak 😊

@ForestFlowerFairy so sorry to hear about your dog, very frightening for all of you but at least it makes the decision easier because you dont have a choice now as you cant have a dog in the house behaving like that.
Nevertheless horrible for you all.

@cannaecookrisotto @Ventress havent been on because I have actually been eating proper food some of which I could taste.!! I am about to go for my second chemo on Friday, this one is with reduced dose docetaxal and phesgo is reduced as standard on second dose. Also better anti sickness drugs hopefully that work.
Still not feeling happy about a return bout after nearly three weeks of being very ill.

Anyone else find they cant taste cheese? One of my favourite things and it tastes revoulting.
Seems like lots of us are having a shit time so for those I havent mentioned and all the new people here good luck with it all, especially those now embarking on new treatments.

@dancingwhilstfacingthemusic thanks for your welcome. Îm new here but unfortunately not new to BC 1st run in at 35 , chemo rads plus tubes in boobs ( brachytherapy) chemical meno plus tamoxifen 5 years that breast behaved itself til now nearly 24( yes 24) years later . 2nd run in at 50 opposite breast different type same treatment different chemo ( minus the tubes in boobs) periods ran for the hills themselves after chemo ,had an extra almost two years of letrozole after tamox. That’s behaved itself so far ( touch wood) 8.5 years
Potential 3rd run in went for mammo check up which ended up in IRM and biopsy for as I said the first boob. So now I’m back in the waiting for results club while DH and I pussyfoot around trying not to let the kids get whiff of anything until they really need to. Phew sorry it’s a long story, and Îm a chatterbox. This thread is so kind and it’s cathartic getting it of my chest ( literally)

@ForestFlowerFairyso sorry to hear about your dog. You’re doing the right thing returning the dog.
@cannaecookrisottothanks for the Moogoo tip and I will look it up.
@Nonamelassthats very tough being in this situation 3 times.
Still feeling very tired. It’s like my head is too heavy for my neck.

Ahhh @ForestFlowerFairy I’m so sorry about you having to rehome your dog but echoing what everyone has already said, it’s the right move for both your family and the dog. You should take a lot of comfort from the fact that you couldn’t possibly have tried harder. You did your best for the dog and to try and make things work after the first incident - you can’t do any more than you’ve already ❤️.

@Nonamelass we’re all hoping and crossing everything with you that it’s not a 3rd occurrence. I can’t imagine how scary that must be having already gone through it twice before. If the results do come back as being another go round the hamster wheel of wankery we will hold your hand and tread the path with you. We love chatterboxes here! Get it all out :)

I read a news article today about Bracytherapy and a new treatment being approved in the UK to replace it. Bracytherapy sounds absolutely brutal!! You’re obviously an absolute badass to have gone through what you have, twice!! And come out of the other end as you have.

I have two cats. They’re actually the overlords of this household. One is 15 and a bit slower but still a malevolent gargoyle whereas the younger cat is 4 but soft as anything. Rolls on her back for belly rubs!!

You were chosen by the cat distribution network. It’s fate.

@Ventress I hear you on working with family biting you in the arse! My sis is 22 so I’m like a second mum really. I was an only child until I was 12 and then both mum and dad (who had remarried new partners by then) starting popping out sprogs left right and centre until I had 4 siblings!!

I’ll ask her to do one day a week so she can carry on with her normal day job, then if it doesn’t work
out she still has that to fall back into. Whereas if it goes well then in the longterm, she could end up with me full time but I’ll need that contingency of her own job for at least the first 12 months just in case.

Mum would batter me if I fired my sister 😂. Christmas Day would be awkward as shit too.

@dancingwhilstfacingthemusic
I’m terrified of ending active treatment, I’m worried I’ll get anxious constantly over every twinge and pain. How do you manage this? Do/did you have similar worries when you finished the bulk of yours?

I’ve started watching “The Reckoning” on Netflix about Sean “P Diddy” Combs. He’s such a twat.
Ive never liked him, even before all the allegations. The era of music on the programme is my favourite type of music and he’s always made my teeth itch.
I wasn’t going to watch the documentary for this reason but DH put it on and it’s actually really good!

@cantbelieveIamhere
Excellent that you’ve been eating normal food!! I’m living on sweet things because everything else tastes horrific to me. I can tolerate cake and Marmite (not at the same time.. but Marmite on a croissant has changed my life!) anything else is vile so I feel your pain!

Fingers crossed the reduced dose will ease some of the side effects for you and you get a longer period of feeling “well” before the next treatment.

I received some very good advice on this thread and it’s served me well - avoid your favourite foods whilst on chemo so the revolting taste doesn’t ruin it for you in the future (by association).

I’m hoping that chemo will ruin cake for me and I’ll end up becoming really svelte (wishful thinking 😂).

@LeftBoobGoneRogue
If you try the MooGoo let me know if you find it helps as I’ll be doing radio after surgery next year and ill stock up!

The chemo tiredness is something else isn’t it? Tiredness as a word doesn’t even cut the mustard, fatigue barely touches the side either. It’s a cross between being drained and just sheer buggered 😂 < we should petition to make this the technical term for it

One other thing I forgot to include, does anybody else feel like time has sped up? I feel like the last 12 weeks has rushed by in a flash of chemo Wednesdays. I can’t explain it, but it feels like yesterday I was doing the first week and now I’ve done 12. I think I’ve been very lucky with side effects (if I was feeling rotten in bed it likely would have dragged. Sidenote: I think it’s purely down to luck. I don’t attribute anything in particular to me getting off quite lightly. Except maybe drinking more water than a bloomin penguin helped a bit).

It’s been a blur of treatment and routine. I think I rely on this routine and predictably of treatment to keep putting one foot in front of the other. Keeps me sane (along with the girls). If there’s any deviation to the routine I start with anxiety and catastrophizing. Like the MRI on Monday. It’s driving me nuts even though I’m not expecting bad news because I can literally feel the bastard twat tumour getting smaller with each cycle. Yet I’m flapping about it. I don’t know how I’m going to cope waiting for pathology results post-surgery and those scans. You’ll all be talking me off the ceiling .

Re creams/lotions for post-radiotherpay boobs. My radio team gave me Flamigel to use and asked me not to use anything else. It is a cooling gel and worked well for me. I've looked it up and you can buy it without a prescription but it's not cheap. Might be worth asking your radiologist if they'll prescribe?

@ForestFlowerFairy I'm so sorry to hear what happened with the dog. I hope the dogs trust are helpful for you today and dont prolong things any further. I can only imagine how stressful this is for you all. You should take time to rest and decompress afterwards.

@cannaecookrisotto marmite was my go to during chemo. I’d have it on toast every morning on Jason’s sourdough, which also helped to scrape my claggy chemo tongue!

My current strategy for dealing with ongoing rather than full on treatment is fingers in the ears and lalalalalala! I try not to think about it too much, but am being monitored at the cancer centre every two weeks as I start Ribocyclib, so I guess it’s still very much in my face.

Oh bless you @Nonamelass your gansta cat sounds lovely. I'm not a big believer either but if a furry vagrant turns up on my doorstep on the anniversary of my beautiful girl's death I will take that as an omen too.

So pleased that you are eating normal food @cantbelieveIamhere that must feel fantastic. Like @cannaecookrisotto the only things which don't taste awful to me are cake and chocolate. Not ideal. I didn't even like chocolate before. I've ever had a sweet tooth. The thing I miss most is tea. I wish tea tasted like it used to. I will have to try Marmite. Contrary to the advert, I (previously) neither liked nor disliked it.

I hope things go as well as they can today @ForestFlowerFairy Wishing you well

I am, hopefully, starting on Ribociclib soon too @dancingwhilstfacingthemusic I hope it goes well for you/us. I'm not sure how I feel about it. The weekly chemo is a fix point in my week and I know I'm being closely monitored. I'm not sure how I'll feel when I am just getting repeat prescriptions from the GP. I have lots of questions I need to raise at my next oncology meeting. I completely agree with @cannaecookrisotto when she says that the past months have been a blur of treatment and routine. I'm starting to feel rather scared of not having that.

I think getting your sister involved is a great idea @cannaecookrisotto. I guess the trick is to keep work and family separate. It would certainly help take some of the load from you though. Will you get the results of the MRI at your next oncology appointment?

The gap between treatment/scans and results is interminable and definitely one of the worst parts of this stupid game we are all playing.

I don't know how to even describe the tiredness/fatigue/exhaustion. None of the terms available seem appropriate. Perhaps we should have a competition to give it a name? Answers on a postcard etc...

Wishing peaceful and pain free Thursday's to you all x

I took my first letrozole tablet last night. I’ve not grown a 2nd head yet. It will be interesting how it pans out. I had a late menopause at 57 but didn’t start HRT until 2022 (would have started earlier but covid made GP access more difficult). I had my recall appointment at the breast clinic on 23rd of July and the radiologist told me he was 90% sure it was cancer. I tried going cold turkey on HRT but within days I was dizzy and nauseous so I cut the patched in half and decided to reduce down over a few weeks with my GP’s agreement. Stopped completely early October. As soon as I halved the dose, my left ankle stiffness got much worse when I first got up. After stopping completely, my sleep duration and deteriorated and just before my radiotherapy started I started to get pain at the top of my back/neck. It will be interesting to see what side effects appear once my estrogen is further reduced. I also had to stop my vaginal estrogen even though research seems to show to doesn’t increase recurrence risk.
I am really unhappy about taking AIs particularly as I know all the issues that can arise from hormones suppression after DH’s prostate cancer diagnosis during COVID. It really affected the QOL for both of us.

i’m on taxol (what we call paclitaxol in the US I think) and my feet feel like marshmallows! The fingers tingle and I while I don’t have clothes with buttons I’m now realizing dropping things might be part of the neuropathy. I thank you so much.

Hey @Sbmpp
yes, Taxol is the brand name, Paclitaxol is the drug name :)

Sounds like neuropathy, how many rounds have you had so far? Some people have a lot of success using the cold gloves and socks, there’s a lot of science behind it working, especially for the Taxol. Do they offer this in the US? If not, you could get some on Amazon and take them in with you.

I use them for the first 4-5 rounds then stopped as I was too uncomfortable but fortunately haven’t developed neuropathy, I’ve completed the Taxol now at 12 weeks but I think I read the studies showed the biggest benefit of the cryotherapy for hands and feet is in the first 1-5 cycles(ish).

Do mention it to your team because it can be quite debilitating and if you’re finding it worsening each week they could adjust your dose slightly to ease the symptoms but without impacting treatment efficiency.

What type of cancer are you being treated for?

I’m breast, the triple negative variety. We’ve a wide cancer selection in here but it’s a lovely supportive place and I hope you stay and join us :)

@ForestFlowerFairy
How did it go? :(
I hope you’re ok, I know you’re probably really sad but you’ve done the right thing my love. I’m sending gentle hugs to you and yours xx

@Ventress
I don’t know when I’ll get the results but I’m simultaneously shit scared of them whilst being cautiously optimistic. I was having a good rummage around the old left tit earlier and it’s now difficult to distinguish what is breast tissue and what is tumour. So I KNOW the chemo is working and the tumour (tumour is also a fucking crap word. We need a new one for this too. I’ve taken to calling it Judas) is shrinking nicely. But just the scan and waiting for results. It’s shit.

Apparently on the regimen that I’m on, a % of patients receive a “PCR” or Complete Pathological Response. So when the Judas and tissue is removed, the pathology comes back as all cancer gone. Zapped. More women still have residual than a PCR so I’m not getting my hopes up, and the most important thing is clear margins and nodes. But it’s still a bastard mind game, and I’ll feel like I’ve failed if I have residual. It won’t even matter that much, I’ll still receive radiotherapy, immuno or more oral chemo for 6 months after 🤷🏼‍♀️.

I like the idea of a word game for the chemo fatigue. I’ll try and think of one tomorrow otherwise I’ll be up all night thinking of words!

I hope you’re ok, your scans are next week aren’t they? (Forgive me if I’m wrong, my chemo brain is like a sieve). I’ll be sending you a massive hand hold ❤️.

@LeftBoobGoneRogue
I hope the letrozole is kind to you, somebody does need to invent some kind of miracle menopause treatment that doesn’t piss around with our hormones or increase the risk of reoccurrence and just makes it all go away.

One of my clients is BIG pharma, I might suggest it to them They’ll likely laugh and tell me to bog off but you don’t ask you don’t get 🤷🏼‍♀️.

I’m currently having meno symptoms due to the treatment I’m having. At 34 I thought this might mean I’m getting it out of the way now but my Oncologist told me that it’s probably I will still go through actual menopause later on as well. So get to experience this shite twice. I always thought my mum was being a bit dramatic when telling me about these night sweats and raging moods… oh how karma is now laughing in my face.

@dancingwhilstfacingthemusic
Amen to the marmite! I have it with lashings of Lurpak and a slither of Marmite - on toast. On a croissant I just take the entire pot with me and lather it on the next instalment about to enter my mouth. The strong taste powers straight through the chemo gank. You should try it for sure @Ventress.

I’ll likely do the Lalalaa method too. I do this now!

@Poledra
Thanks for the Flamigel tip, I will mention to my radiologist when the time comes and see if they’ll prescribe. If not I’ll buy it, if it works I’m all for it!

In other exciting news, my throat is inflamed. It doesn’t hurt, but I can barely talk. My throat feels a lot smaller and drier than normal therefore I sound like I’ve smoked 150 Woodbines.

I can’t believe how illiterate I am since starting chemotherapy. I can’t even be bothered editing my post because it’s only going to get worse on the EC - and I know you all understand my plight. I’m generally a bit of a stiff pedant when it comes to English but I’ll never judge ever again!!!

To cannaecookrisotto: I’m sorry I don’t know how to transfer names from one post to the next (my dd and dh were clueless too:). Yes I do have neuropathy and my
taxol dosage has been decreased several times. I think I just finished my eighth round of taxol and Ramucirumab. I asked my oncology nurse about the icy gloves and booties and she told me some pts. order them from Amazon but they aren’t routinely ordered. I have esophageal cancer and learned that GI cancers and breast cancer were both treated by taxol. My most recent PET scan was good! I get them about every three months and am so anxious each time. I also have to take Granyx (3 shots given over 3 days) to stimulate my bone marrow to produce more cells. Yes it is pretty painful but I have a lovely palliative care dr who prescribes me Percocet for the pain. My “cancer journey” actually started 2 yrs ago with a routine EGD in which my GI dr found a tumor (my dad died of this same cancer so my pcp ordered routine egd’s every 3 yrs). This round of chemo drugs is actually my third. December 2023 was the 1st. I had daily radiation for 6 or 7 (?) weeks along with the chemos for 6 or 7 weeks. The nightmare came several weeks after radiation stopped. My throat felt like I was swallowing glass and as I wasn’t notified prior to I figured I was supposed to suck it up 🤷🏻‍♀️. I finally called my dr who prescribed something (idk what but stronger than codeine :). Cancer chemo #2 were 5fu (the little lemon that was attached to my portacath) and oxaliplatin (the lovely stuff that you need to avoid anything cold. I used to wear gloves daily and it lasted weeks after I finished. I was also given keytruda but had an allergic reaction and ended up in the hospital for two weeks with continuous n/v/d. My oncologist told me I could not have any further immunotherapies. I was really hopeful that that would change my diagnosis…which is that my cancer is terminal. (sorry for the long post). So here I am on tx #3 the taxol etc. It is palliative and as my dr told me “you can’t be on chemo forever”. I see her again end of month and will see what happens next. My tumor is responsive to targeted therapy but it has very severe vomiting (like as soon as the infusion starts) as a side effect so we’ll see what happens. All that being said, my family have been so supportive. My dh rarely leaves my side. My oldest dd lives with us has been wonderful, my middle dh (lives in LA) visits weekly, and my youngest (lives in Idaho) flies in at least twice/yr.

I sure hope this post wasn’t tldr:). My heart is with everyone here. I’m hoping and praying for you all.

Yep I’m the same I keep forgetting words

Me too! I look at my posts afterwards and think “WTF”? Anyway, I hope you all get the gist.

hi @Sbmpp. I’m on weekly taxol, in the uk and I haven’t been offered the cold mitts and socks either. I’m doing round 13 today so probably a bit late to start now. I’m so sorry you are going through too, (you have really been through the mill haven’t you?) but welcome to our club. Please share, vent, moan and tell us your worries and everyday stuff. Whatever suits you. We are here for you, and each other.

‘Im off to the hospital in a minute for my chemo so this is brief but I wish you all well x

Hi all. Update from me is mainly child related.
I ended up taking dd to hospital last night as she got a sudden blinding headache and shaking and aversion to lights.
She was triaged immediately and then our own room. Moved later to a side ward on our own. Very lucky. They did the bloods and she hardly noticed and thankfully they are normal. Very large bruises had developed again on her bottom from trampoline bum drops.

Dr mentioned possibility of something more vascular, or HSP. But the bloods reassured her it was probably viral.

So no answers, but at least we can be reassured whilst we investigate.

Got home at midnight so she is asleep and I'm wishing I was!

I feel like I've turned a corner on second surgery recovery. Dressing is off. Did plates yesterday and was ok. Let's hope i dont need surgery 3. Results next friday.

Gosh @FcukBreastCancerthat sounds so scary, I'm pleased your daughter is able to sleep now, have they said what they do next to investigate?
Great news on the surgery recovery but I've no doubt the next week will be horrible waiting. I'll keep everything crossed for you.

The word thing I thought was just me, I'm often waving my arms and then just giving up. I did ask my husband what it feels like to be the cleverest person in the house and he said it's scary 🤣
I've always been terrible at spelling so I can't blame the cancer on that.

On the actual cancer front the pregabalin is working really well, my oxy use is down from 5ml every 4 hours (including the night) to the occasional 2.5 ml dose in the day and always a 2.5 ml dose at nighttime - I find eating an evening meal sets off the pain BUT I think for that dosage to drop so much in 2 weeks is amazing

As for our dog, oh it's horrible. I called Dogs Trust, first lady very sympathetic - the second who called to book the return less so. However they are currently full, next space is tomorrow. Husband is refusing to be near her or even in the same room, very nearly booked a hotel until she left. So it's on me to drive her, I've not driven in almost 5 months and it's a good 90 minutes away. I'll avoid all painkillers today and tomorrow so I'm not dozy. I have no idea how I'll hand her over, she's acting as usual, jumped into bed for her morning cuddle, we had a good play and she's back to snoozing in her crate.
I've written them a letter about all her good points, things she loves, what we do when shes having a moment. I just can't stop wishing she hadn't bitten again, I'm starting to get better, based on my improvement the last 2 weeks I feel we're so close to getting the trainer back in
And I'm a little angry
She has been exhausting during my treatment, she does need a lot of work. When I was first diagnosed and we'd had her about a month my Mum told me to return her and I said no, we'll manage.
When she bit me and we almost returned her then said no, well keep putting the work in and we did, we really did and now finally just as I'm starting to feel better this happens and we just can't justify keeping a dog that's bitten twice. But this whole shitty mess would have been so much easier had we returned her at the start. When we got her she'd been there 2 months because no one wants a disabled dog, who the hell will want her now?
Christ even writing that and I'm in tears, despite everything I love her

Yep I drop stuff alot but then Îve always been very clumsy so not sure if its really neuropathy ;)

Îm in France and was never offered cold mitts or socks either. It kind of would have felt like extra torture anyway for me I think

@Sbmpp I am so sorry like ventress says it sounds like you really have been through the mill. Having a wonderful family around you must be a great support.
I eventually found out how to link names ( was puzzled too at first) you open a message to write on this thread then go onto the @ sign on your keyboard / phone then pop in the first couple of letters of the name of the person and it comes up then you click on that .
sending warm wishes

Can't keep up with you lovely people - forgive me if I miss people out - @FcukBreastCancer sounds like scary stuff, We've enough going on, eh?

@Ventress I really thought it would be another script popping through the letter box each month (our pharmacy delivers). Nope. The initial routine with Ribocyclib was heart echo, bloods, interview with (not very nice) consultant team member, letter, signature for permission. A couple of weeks later I had an appointment on the chemo ward I'd attended for weeks, sat and chatted with a totally lovely nurse practitioner who then sent me off with my 3 week dose and a bag of anti diahorreal and anti sickness stuff. Yay. I have to attend two weeks into the process for bloods and a discussion about how I'm doing. For a few weeks, I'll be going fortnightly for this purpose.

Ribocyclib is a tablet or two daily for three weeks, then a week off. I have to put it in an egg cup as I'm not allowed to touch it with my fingers for fear of contaminating other household members!

Then we will skip to monthly bloods - bloods on a friday, then I have to attend in person the following monday for a chat and prescription issue. There will be an occasional ecg. Once things are going well on monthly prescriptions, I may be able to jump to two months at a time, but two visits for each one: bloods/ prescription. I presume that after the bloods, my info goes to the specialist's team to approve the next set.

Very different from getting the AI on regular prescriptions and just attending every 6 months for my Zol infusion.

So far, only two weeks in, but I've been fine on the ribocyclib. I'm due to have bloods done and have a chat on Monday.

Good news is that we spoke to our holiday insurers as we've a weekend away in Spain shortly. Having a further preventative measure added to my drugs has not changed my insurance or increased the cost.

@ForestFlowerFairy thinking of you guys. I hope you're doing ok and also that your husband's hand is ok. Our wonderful old dog died a few weeks ago and it is awful losing one no matter how it happens. un mn hugs.

@Nonamelass Thank you!! I did it!!!