New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

I got home about 6:00 and feel absolutely rubbish. I guess that's what happens when I've been lying in bed for almost 3 weeks, I'm walking around like a 90 year old and my legs are that sore I have to crawl upstairs I know I'll feel better in a few days but I'm almost wishing I stayed at hospital

Purple sorry that you are feeling rubbish after finally getting out of hospital, but as you say it's quite understandable after a long 3 weeks. Hope you start to feel better tomorrow 💐.

Blimey, that is impressive Flippy

purple I was like that when I first got home. It will get easier. Be gentle with yourself. Hopefully you'll manage to get a better night's sleep in your own bed.

Oh purple glad you are home and hope you get some decent rest tonight.

Hi everyone- sorry to be AWOL for a while, but I've been sleeping a stupid amount, as well as just trying to forget about the whole bloody cancer thing.

Does anybody have any experience of Palbociclib for advanced breast cancer? My medical team are pretty much insisting I take it alongside the Letrozole, but I'm stupidly reluctant because of the risk of hair loss.

I'm getting married in a few weeks, and I just want to look healthy, you know? I know it's daft, but I feel like my hair is my one beauty

Hello BitofFun - did they say what the risk of hair loss was and how long it would take? With my first chemo they said the likelihood I’d lose my hair was pretty much 100% but that it wouldn’t go until a couple of weeks after the second dose which was about 6 weeks from the start and that’s what happened. So you may still be ok for wedding even if you do end up losing your hair if that makes sense. Otherwise you can get really natural looking wigs.

For those that had a taxane chemo- docetaxel (taxotere)(sp?)or taxol did you get neuropathy? I had my fourth taxol yesterday and despite using ice mittens (uncomfortable so had an Ativan to knock me out) I’m getting mild pain in my right hand which I suspect is neuropathy. I’m worried as I hear this can be permanent but my oncologist won’t stop the taxol as she said it’s essential for me. Any thoughts/advice appreciated x

Hi BOF
My hair took quite a while to go too - at least 6 weeks. Personally I would take it because apart from anything else it may stop you feeling bleugh on the day - any side effects should have bedded in my then.

Simmi1 - I've had neuropathy with taxol. It's very common and I wouldn't worry about it too much. It got to a level of pins & needles in hands and feet and didn't get any worse. It disappeared afterwards too.

It's quiet on here today.

BOF is there any option to delay it until after the wedding and only take the letrozole for now? My medical team have been quite flexible when it's something important. I think with the targeted therapy drugs, the hair loss is often more gradual/less dramatic than with chemotherapy, but I don't know if that's just the ones I've heard about. Is the wedding all planned now or do you have a last minute to-do list?

Simmi how many cycles do you have left? I only know a couple of people who have any major permanent neuropathy symptoms. You could ask about reducing the dose a bit as a compromise.

TQ how are you feeling now?

I hope KeepCalm, Pandora and Mrstraveller are recovering well. purple you must be absolutely exhausted today.

Waving to all

Thanks TQ and Leslie for your responses. Yes TQ - I have the tingling/pins and needles in hands and feet. I have 8 cycles left (I’ve done 4 of 12 weekly cycles). I just thought this could be cumulative and if it gets worse/severe it may not go. It’s annoying more than anything. My oncologist explained that we’re aiming for a pathologically complete response with chemo before surgery for me (ie no cancer left when they operate) and I reduce my chances of getting this if I stop taxol which in turn worsens my prognosis ☹️

Hope everyone’s ok and Pandora and keepcalm are healing well.

Hi,

Glad you are out of hospital purple sorry that you are feeling so decrepit, don't be too hard on yourself though, you are bound to be a bit stiff after so long in bed... You need to build your strength up now (gradually unfortunately!)

Bitoffun they said my hair would fall out around 3 weeks after my 1st chemo if it was going to, I cold capped, but started losing hair after 3 weeks (so only cold capped for the first 2 chemo as it was a fortnightly chemo)
As leslie says, it is worth speaking to them to see if that part of treatment can be delayed a bit, or just get their advice. It may be that you could cold cap initially if it is the sort of drug that makes you lose hair. I cut mine short as had heard that there was less weight on the follicle, but then read conflicting articles that said it made no difference whether hair was long or short nowadays. I do wonder if mine had been longer if I would have shaved it off still as I may have disguised the patchy hair loss better (it would have been a major comb over though!)
As TQ says, if there are side effects (other than hair loss) if you start it sooner, you may feel less crappy and more able to enjoy the big day better. There is no right answer really, but maybe best to speak to your oncologist for their opinion too and then decide. I totally understand you wanting to look like you with your hair as it is for your wedding day. I found the hair loss side of things upsetting at the time, I didn't like my short hairdo pre chemo as it hadn't felt like my choice or when it thinned a lot, but oddly didn't mind it once I shaved my head. Now mine is growing back, I look like a rough coated Guinea pig as (poss this is chemo curl at work) it seems to be growing in lots of directions now & is quite tufty! Good luck though.
Are you all sorted for your wedding day now?

Well the poorly kids are now (at last) improved. They still look very gaunt & skinny from hardly eating all week, but at last seem a bit better. I knew the youngest was ok when she decided to launch herself from the beanbag onto the chair I was sitting on yesterday. After telling her not to do it, she did it again, straight into my side, head butting just below where my op was. It has been very sore ever since and I have had to take pain killers today. It brought tears to my eyes yesterday when she did it. Am looking forward to school on Monday and I may even go back to bed for a few hours...

I hope everyone is having a good weekend & all who had their ops are at home and recovering well...

X

I am recovering although think it’s a bit more painful now than it was at the beginning. Possibly some of the bruising coming out I guess. Hopefully at least one of the drains will come out tomorrow when the District Nurse visits. I don’t actually mind looking at myself. I just look beaten up and battered and minus a breast of course. If I lean on my left arm or elbow I get shooting pains up my arm. I’m left handed so sometimes forget to use my right arm/hand.

Had visits from family who came with cake and chocolates and then step son came over and we had a takeaway. My taste buds seem to be going back to normal now as it’s a month since my last chemo.

So have had a nice day. In bed now.

Noodles. Can’t imagine how painful it must have been to be head butted in that area. That’s quite a lot of force with a hard object!

Hi, could I join you? Not really anything to complain about, but my son (15) had a colonoscopy this week & whilst, as expected, they’ve diagnosed Crohn’s, they’ve also taken biopsies. He’s just relieved the colonoscopy is all over & I don’t think he’s taken in that they took biopsies too. I know it’s highly likely the biopsies won’t find anything, but I’m single, it’s 23.47 & dark & the worry is growing ....

Oh Freddie, I'm really sorry you are going through this- it must be hideous to feel so helpless. I've no experience of that type of cancer though, so can't really advise you.

Thanks to everybody chipping in on my whining. I can't delay the treatment, unfortunately: it's now or never, because of the funding protocols, and I've been so strongly advised that take it (for prolonged survival) that I feel I must. I'm so pissed off about it though. To be fair, it's more "thinning" than complete loss which is a likely side effect, but I'm still scared.

bitoffun it sounds like the thinning may not even happen and may be delayed even if it does. I know that drug isn’t funded here in Australia and there’s a massive uproar about it so I’d just take it. I know what you mean though - losing hair is tough!

Bitoffun with my first lot of chemo they said my hair may thin but it didn't at all so it's not a definite yours will fall out. Plus if it's only a few weeks until you get married then fingers crossed that any hair loss you might have won't have started yet. I bet you look amazing whatever happens

Oh Freddie it must be a million times worse when it's your DC. Do you know when you'll get the results?

How are you doing Leslie? Did you manage to make it to the kitchen?

How are you feeling Purple? Are you managing OK? Hopefully you're resting.
Leslie another one hoping you made it to the kitchen? Did you indulge in any cheese-related fridge-raiding?

I've got an appt at 2pm tomorrow to assess my hands and feet. I have no idea which way things will go...

Hope appointment goes well tomorrow TQ and hope you are feeling a bit better today Purple.

Keep Calm and Pandora - how are you both doing?

Just wondered whether anyone who has had a mastectomy has ordered any products from a site called Amoena? I was having a look yesterday and have bought a camisole type thing and non-wired bra. They both have pockets in for the breast form. At the moment I am still in pyjamas and haven't been out since Monday when I had the op but will have to go out at some point just waiting for the drains to be removed (hopefully today).

xx

One of my drain bottles now removed. Feel so much lighter.

Hopefully the last one tomorrow or Tuesday.

Xx

Hi Mrs traveller,
I get my bras from Amoena. I order the non wired, padded bras and they are really comfy. I usually buy them in their sale so the prices are quite reasonable.

Thanks Catsforme. That’s good to know. The camisole thing I bought was in the sale and I got 10% off as a new customer. I had bought an M&S mastectomy bra but it’s not a great fit.

Evening all

No trip to the kitchen as I've been inundated with visitors. Some more welcome than others

I won't be able to go in there this week, as we are having a new kitchen installed starting on Monday! It's been my project really. I chose most of it. So it's a bit frustrating that I won't get to use it. We started the planning process months ago, but this was the earliest they could fit it. We've been unsure whether to postpone, but decided to just go for it. So hopefully once it's all finished I'll be able to see it at least once :)

TQ good luck tomorrow.

BOF it's shit I think you're making the right decision. Hopefully any thinning will not happen immediately.

Waving to everyone else.

Hi Leslie as if you are also an amazing kitchen designer as well as queen of the Lacies and everything else! You are a woman of so many talents!

I think I’d want the project to go ahead too. It should be good seeing it all coming together. I think there should be a ribbon cutting ceremony and everything...

Sorry you've had to put up with the unwanted visitors Leslie. I hope they weren't too annoying.
A new kitchen! Does this mean you'll be living on takeaways? or is it off takeaways?
My hands are weird - I've got wrinkles all over my fingers and palms, not the backs, which makes them look very old. I'm not hopeful but would love to be proved wrong. If they take me off the olaparib and cedirinab I will be very upset because the only drug left is Taxol/Paclitaxel, which only worked for as long as I was having it. And it will mean picc line & IV..... Can't be helped though - it is what it is.

Hi everyone , Have been really quiet as my daughter had a sickness bug and a few days later I caught it! It's just lifting today. Haven't caught up with what's been happening to everyone but I did notice some sad posts dedicated to your friend Miri; I'm sorry to read those x x

Sadly not TQ. My mum did some batch cooking so there's healthy food in the freezer! Hopefully we will be allowed one takeaway night... I'll keep everything crossed for you that they won't take you off the new drugs is the cream the pharmacist recommended helping at all? I was also told to avoid hot water (even with rubber gloves).

Namechange well, it's a pretty bog standard kitchen really! But nicer than our current one, which is falling apart.

Rosiesmummy sorry you've both been poorly