Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

zorgo I was officially at work between diagnosis and surgery aside from a few days when I just couldn't face it, then I had 4 weeks off to recover post surgery. That pretty much took me up to my first chemo. I have been on 7 x 21 day cycles and worked for the first 2 cycles but then had to give in to going off sick. My employer had been very flexible and allowed me to work from home.
Do you know what chemo regime you'll be on? You mentioned perjeta and herceprin upthread, but these are targetted drugs given alongside chemo. You will be getting something else as well.

Will read the rest of the thread later....zorgo caught my eye as I came on to update

wtf99 thanks for your message - the only thing I've been told so far is herceptin and perjeta. Didn't realise there's something else aswell - that's all that was written down on the info they gave me at my biopsy results appointment. Still waiting to see oncologist (I was referred last week, but told the multidisciplinary team between wythenshawe and the Christie wouldn't meet until today). Am guessing that I'll be given an appointment with an oncologist in the next couple of weeks - so I guess I'll find out what other drugs I'll be having then - I'm not sure? Glad you mentioned there will be more, as that would have thrown me otherwise! What did you have - or do you know what's "normal"? Thanks again!

Evening all

I was posting on the last thread but fell off it as I lost my friend to pancreatic cancer a couple of weeks ago.

I had a swelling under my collarbone that I had an ultrasound on. GP said it was a lymph node. But not so worried because its small - not greater than 1cm. She said she would just like to keep an eye on it and asked me to book in for another blood test.

So I had the blood test the Thursday before last, nurse said results would be in Tuesday. I didn't hear anything but got a letter on Wednesday saying I had an appt for another ultrasound on Monday 14th. I thought this was odd because as far as I knew this would have been discussed first i.e. we'd like you to have another US? I've also got another GP appt on that same day so might know more then 🤷🏻‍♀️

zorgo I'm.only really an expert in me but as I understand it the targeted therapies are only licensed to be given alongside chemo drugs so I think its highly likely that you will be having something in addition to what you already know.

I think.you mentioned 18 weeks of treatment which potentially could equate to 6 cycles of 21 days, so you have the drugs every three weeks giving you time to recover between treatments. I was told to expect 6 or 7 cycles but ended up having 7 cycles of chemo every 21 days, with the herceptin and perjeta added in for cycles 4 to 7. I will be continuing the herceptin only for a total of 18 treatments. The remainder will be given by injection every 21 days rather than intravenously, so much quicker and more simple, and fairly light on side effects as I understand it.

I think my regime is fairly typical, (It was FEC-T....3 cycles if FEC and 4 of Taxotere, with the targetted drugs added in) but there are all sorts of combinations so yours will be tailored to your needs by your oncologist. I hope this has been helpful and not given you more to worry about. I'm sure you will feel.much better informed once you have seen your oncologist But you could always call your breast care nurse for a bit of a clue as to what the team are thinking if you want some reassurance before then. Feel free to pm me too if you wish.

Try not to worry. It's all doable.....I've just done it!

Hi jaysus
So sorry to hear about your friend. That condition does seem to be a particularly horrible one to have. I hope she got good care and that you're ok.

In your position I'd be tempted to request a phone consultation with your GP prior to the next scan to find out what your blood test showed and what his/her thinking is. But then I'm impatient when I'm waiting to find out what's going on. I guess it will all be clearer at your next planned appt if you're happy to wait for that. Will your GP have the 2nd scan results by then?

Ellen that bowel referral sounds like an error to me. Good that you're querying it.

meercat sorry to hear you're feeling ropey. That's not fair after all that you've been through.
My oncologist recently told me that it takes about 6 weeks for immunity to return to normal. But I guess there's variance in that. And important to remember that even healthy people can pick up bugs....especially from plane aircon.
Hope you're feeling better soon

I think I'm a bit wakeful on steroids. Should probably try to get some sleep.
Night all ....zzz

Another wakeful one here. First chemotherapy tomorrow. I've had a few good night's sleep this last week though.
wtf I'm so pleased you have ticked off that final chemo. It must feel like a marathon.
Zorgo I would echo what wtf says. Herceptin is only licensed in the UK to be given alongside chemotherapy. There are different chemotherapy drugs given to breast cancer patients though the one wtf had seems the most common. Some people have surgery first as I did and others have chemo then surgery.
Jaysus I'd be pestering the GP before 14th to ask why. Could be something very simple.

Hello to all, whether sleeping or awake! I haven't had the oomph to catch up properly since chemo on Friday, have been very tired, and usual issues with food/taste. My cold seemed to disappear, but has now returned!
Anyway big congrats to WTF on finishing chemo - Wonderwoman indeed! - and good luck to Skap for your first one tomorrow (today?).
Also thinking of ellen, Zorgoth, AhJaysus and anyone else who is waiting for appointments, procedures or explanations. Apologies to those I haven't mentioned.
I do wish I could at least enjoy a cup of tea and a slice of toast! (Moans pathetically)

skap the very best of luck for today. Good to get started. Let us know how it goes. You will be fine.

Bridget my utmost sympathy on the taste front. It really is one of those things which which almost gets a passing mention in the side effects info that's given out yet for me has had one of the biggest daily impacts but I guess it's not life threatening so that's why.....I know I'm not gonna fade to nothing if I can force down some custard and soup for a couple of weeks! My taste buds rallied a little over the weekend so I ate better and regained a bit if the weight I had lost. But I can already feel them starting to change again. I've been drinking diluted apple juice and that's starting to taste gloopy and yuck this morning 😐 ah well....not for long.

zorgo hope you're ok this morning.

And best wishes to everyone else. Thank you so much for all the kind comments as I've crossed the chemo finish line. I thought I'd be in bits but feeling surprisingly calm. It's good!

I have a good friend coming to keep me company today. She's an expert knitter and is helping me knit a very basic jumper....I've only done the back so far but am absolutely loving it! Might start a sleeve today I think....or maybe the front. We will be knitting together in a companionable way

Have a good day everyone.

Morning all

I’m so pleased you’re finished with treatment WTF, it’s been a hard old road for you with the side effects but if you’re like me I hope you’re feeling a spring in your step today just for having finished, and that you have an easy time with the next few days. If you don’t at least you know it’s the last time for the loss of taste etc. Yay! Enjoy your knitting.

Zorgoth have a look at the breast cancer care website for details on the various chemo protocols - as you can see there are quite a lot. I had EC then Paclitaxel/carboplatin for mine and I’ve no idea really why that was chosen rather than any other but my oncologist was very clear that that was the right approach so that felt right to me. But never be afraid to ask them why they recommend the treatment they do, if you want more info.

As for working through treatment, I definitely couldn’t. I thought I would want to, but when it came to it I didn’t and also from the first cycle had about 4 days in bed each time feeling wrung out. Moving and even doing any complicated thinking wasn’t an option! I should say this was the EC phase, and the pac/carb phase wasn't like that, but it was really physically draining. I was in good health before too. So maybe make contingency plans if you do hope to keep going to work for some/all of it but you may react quite differently from me!

Skap best of British for your chemo. A big recommendation from me for you and anyone else about to embark on it: start painting your nails with a very dark polish, and keep it up for the whole time you have chemo. UV light damages nails on chemo so this is like a sunblock for your nails. I credit this with keeping mine pretty unscathed by the process, although there are some white lines and flaking they really aren’t too bad. I’d also have had my eyebrows microbladed before starting if I’d known at the time how sparse they’d get, and how much pencil I’d use trying to draw them back on but this is probably a tip coming too late for you given you are starting tomorrow. And you may not be bothered by thin eyebrows!

AhJaysus I’m sorry to hear about the loss of your friend. I bet you miss her a lot.

Hope meercat is feeling better and Bridget comes out the other side of bad taste buds quickly. Waves to everyone I haven’t mentioned.

Hope you are feeling better meercat
*
WTF* Yay for finishing Chemo, one big box ticked off.

Skap good luck for starting.

I can't remember who asked about working, I basically went in to tidy up my desk the week after I was diagnosed in March and have not worked since, there is no way I could have worked through Chemo (fortnightly 4xAC then 4xTaxol). Unfortunately my job requires a fully functioning brain which I can't say I have had since treatment started and as evidenced by the fact that I am so crap keeping people's stories straight here.

My good news is that my oncologist told me this morning that I can now consider myself cancer free. I'm still a bit sceptical tbh, I would have liked a PET scan but he says that my results after Chemo and MX and the fact that I have had such high dose radiotherapy means that there is no way that anything can remain. My fear of recurrence is something I am going to have to get my head around and I am still in so much pain following Rads that it's hard to absorb good news but I am trying.

Skap Hope all goes well for you. I second the dark nail polish advice and wish I had known about that earlier.

Snows Great news that you have been officially declared cancer free Sorry to hear that you are still in pain though. The treatment for cancer is amazing but it is certainly not pleasant or without drawbacks. I hope you find yourself recovering quickly.

Waves back to Brassica

I am feeling a bit better. I think it is just a really nasty virus but on Sunday evening I thought I was going to have to seek some help as I could hardly breathe but it has eased a lot. Just feels like a heavy cold now except that I coughed so much that my ribs ache. I have put off my Herceptin treatment tomorrow. They said I could still go if I felt well enough but I thought it would be very unfair to risk passing this on to someone working or being treated in the unit.

I survived! All went well and I was home by 1pm and straight to bed to sleep off the piriton. Still a bit woozy but I shall try and stay awake now or I'll be doing a night shift! A bit of nausea but not too bad, don't know how long the anti nausea pre-med lasts but they have given me some tablets. I had hyperemesis with both pregnancies, nausea and sickness for 9 months, and so have a dread of nausea.
Thanks for the tips about nails. I watched a video on the breastcancercare website which covered nails and it didn't mention varnish. They said to use jojoba oil which I have bought. Haven't worn nail varnish for years, does it have to be black or will an opaque pink do? My toes won't be seeing the light of day so would you still do them?
Will read thread properly later.

Well done Skap I think the thing about the nail polish is that it has to be dark enough to stop light getting to the nail.

The Piriton knocked me out too. Hope you get a good sleep tonight without any nausea.

AhJaysusHowaya if they think you have lymphoma, you’d be referred straight to haematology, as they’re going further tests and it’s staying with your GP, I think there’s every change that their suspicions are not blood cancer. But I know how crazily worrying it is, when you know that something’s up but you don’t know what, keep asking questions!

WTF - it seems like only 5 mins since you first appeared on this thread! Glad a major milestone is passed, and all the best for the rest!

Well done skap.

My advice would be to take the additional anti nausea meds before you feel.like you really need them. Don't let it get a grip. I found the nausea to be quite like the kind I had in pregnancy, with over sensitivity to smells etc. And if you're struggling then call the helpline. I did during my first cycle ....i thinki held out til day 5.....and came away with lots of different things for a multi pronged approach which helped me keep it under control. Dont be a hero on this one!

Definitely get dark nail varnish, dark red is ok if you don't want to go black/blue. I would avoid pale pink. Uncovered toes are probably ok, but I like having my nails painted so had those done too.
Hope you have a peaceful night, and take your meds first thing, plus a bit of breakfast if you can manage it.

Thanks for good wishes everyone. I'm feeling ok at the moment. And brassica yes I do have a spring in my step and just a sense of relief really that I don't have to do it again in 3 weeks time!

meercat I hope you feel much better soon.
snows great news from your oncologist though I can understand your caution ...wondering what the future holds goes with this territory I think.

My jumper is taking shape!

skap congratulations on making it through your first chemo session - glad it went ok and wasn't too bad. You've made me feel a bit better about it, as I should be starting in about 3-4 weeks. Waiting for an appointment for a clip to be put in, then a scan; no oncologist appointment yet but the team only met yesterday. Spoke to the breast care nurse and she said it will take 1-2 weeks for me to be seen, and will then start treatment the week after. Hope you continue to feel ok and build yourself up for the next round.

Snows that's really good news, and I do hope the pain from radiotherapy eases very soon.
Skap glad you got through your first chemo treatment ok, hope the next few days are easy enough. Don't push yourself!
meercat sorry you are still suffering with the chest infection, take care of yourself.
WTF you should show us the jumper when it's finished!
Zorgoth you're in my thoughts - waiting to see consultants and start treatment is tough.
In a moment of madness I had a strong americano an hour ago, and half a slice of buttered toast. The coffee tasted better than it did this morning.

I hope the lack of 4am postings means everyone got a good night’s sleep, especially Skap. Sometimes the steroids used to keep me up for a bit on the first night or two, but I echo what you’re all saying about the piriton - that stuff knocked me out good and proper! Yes, the nail varnish needs to be really dark. Mine has been a very dark burgundy sort of colour (tuxe I think it’s called) by Essie. After 5 or 6 months, as a non-varnish wearer before, I’m now getting tolerably good at putting it on and have found good top and bottom coats to give me a few days of pristine nails before something chips! It is a bit of a bugger doing it and sadly you aren’t supposed to get them done at a salon for risk of infection, but then it’s not like I am particularly lacking the time to do them and it is an excuse to do a bit less washing up etc to protect them longer... You can ignore toenails if they’re going to be in socks etc but I did mine as obviously it was spring/summer during my treatment.

Quizard, how are you doing since your shock news last week? I hope you aren’t too floored. Any appointment dates through yet?

Catnidge is it today you’re having your op? Best of luck for it if so, I hope all goes smoothly and that you cleared the decks at work enough for you to disappear with a clear conscience.

How are your armpits Trumpton and Mustard? I don’t think anyone on here has had an easy time with healing after those, it makes me a bit concerned. My surgeon talks about it as if it’s no big deal at all but it sounds very sore and sluggish to heal from how you’ve all found it.

Ellen will someone be driving you to radiotherapy from now on? From what I’ve heard driving gets harder/impossible as the treatment wears on. Don’t push it if you’re getting fatigued.

Hope you’re feeling better again today meercat. I think you’re right (and thoughtful) to stay away from the unit while it clears up. Take care of yourself and build yourself up again. Chicken soup!

Zorgoth have you disclosed your diagnosis at work yet? I remember doing it with my colleagues the day after diagnosis. That was a weird moment. Mostly they didn’t know what to say at all.

Yay for coffee and toast Bridget! How did they taste? We’ll soon be counting you down on your last chemo too, and that will be good. Maybe you can plan the foods that you’ll want to eat once taste buds are fully restored. We went out for a curry on Friday night and for the first time in months I truly enjoyed it. It was such a treat.

I’m so pleased to read your news Snows. But I can imagine hearing that is somehow more uplifting for other people than it is for you (same for me when I was told the tumour had become invisible on scans). Somehow it is curiously underwhelming for the patient. Perhaps it takes a bit of time before it becomes the new normal to see yourself as anything other than a cancer patient.

I had a private message this morning from someone calling themselves BraveHeart11 and titled ‘cancer’ sending a link to something on YouTube. Never heard of this person and have most definitely not clicked on the link, just in case it’s mean and malicious in some way. Just mentioning in case anyone else on here gets something similar. I have reported it just in case.

I played tennis on Monday. I wouldn’t say I had lots of energy (unless the ball came right to me I didn’t bother chasing it!) but it was fun to get out and swing my arms a bit . My eyes and nose were running incessantly in the cold air, which was more irritating than I can describe. I miss nasal hair!!

I’ve also been watching an old series of Bake Off, pre- the channel 4 move which is perfect afternoon viewing with feet up. Mel and Sue and Mary were so much nicer, kinder and funnier than the current lot (though I like Noel). The current series is quite noticeably negative in the judging when you compare. Hollywood was and is an arse.

Brassica I got a PM too but the content had been deleted by then (whether by MN or the poster).

Re working, I work in a school and was told that snotty children and chemo definitely don't mix so was advised not to work. In the end I was off from Oct to the next Sept (start of new school year).

This week is actually my 6 year cancerversary since diagnosis! Seems an age away although I still feel really sick every time I drive past the hospital where I had my chemo!

Hugs to everyone still having treatment or waiting for results.

Well, predictably I hardly slept at all - on top of ill-advised late night coffee I have a cough which is quite troublesome. Brassica curry is often a good option for me, when other foods are unpleasant. Congrats on playing tennis!

DP and I aiming to go out for a coffee this morning. I haven't left the house since Friday! Think I'll be bussing it tho as have quite bad neuropathy in both feet now - has anyone else had this? Walking feels wobbly.

Brassica I've told a couple of close friends at work, and my line manager. Everyone has been so kind, but I find it hard when I see some of them and they ask how I am as it starts me off crying (again!). Hope this passes as the news properly sinks in, but I'm glad I've only told a few people, and won't be telling anyone else for a while.

Hope everyone is feeling ok today. I realised it's exactly 3 weeks since I found the lump in by breast - it seems like such a long time ago and that I've been waiting for ages, whereas things have actually moved quickly! Enjoy your day, everybody - I am busy at work, so being nicely distracted!

I didn’t sleep terribly well last night, as I had my flu jab yesterday and my arm was a bit sore (woke me up when I rolled on to that shoulder)

If you haven’t had one, worth checking if you should - recommended for all immune compromised people, I also had a pneumonia jab last year

And as I’ve just ventured in to the Exercise topic, I thought I’d better post here as well that I am set to complete my mission to be s perfect annoying twat. I’ve just had charity entry to the London Marathon confirmed!