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Cancer Support Thread 83 - Here comes the sun (hopefully)

1000 replies

Silkierabbit · 07/06/2022 20:42

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

OP posts:
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AGreatUsername · 30/08/2022 17:04

@PowerLlama Thank you for delurking to reply. Aveeno is a good idea, I have some of that already. I would love to wet shave but I read that if I do that it may end with the lost hairs getting trapped in the follicles. So annoying. I think that may be what’s happened to my legs, I usually shave every other day but they’ve remained on day-after-shaving stubble for over a week now, I’m wondering if the little hairs are stuck there not long enough to drop out. Maybe I’ll use an exfoliating wash next shower!

MrsPnut · 30/08/2022 21:31

@AGreatUsername I used a flannel to exfoliate my head once I’d had it shaved. I also washed my head every day. It was horrible and flaky/itchy for a few days post shave.

AGreatUsername · 30/08/2022 21:34

Thanks @MrsPnut I’ve just had a really long hot shower, washed my “hair” thoroughly and spent 20 minutes just running my hands over it to try and dislodge as much loose hair as possible. I’m almost bald now but my head feels a little better. I’m probably down to 20% hair at this point. I have a wig appointment on Friday so I’m holding out hope there’ll be one that doesn’t look obviously wig like for our rare evenings out!

PowerLlama · 31/08/2022 00:14

I'm glad you managed to find a solution and that your head feels better. Good luck for the wig appointment, it's amazing how realistic they can be. I thought for a while that nearly everyone having chemo had managed to keep their hair apart from me until I worked out they were wearing wigs!

Runningwithoutstopping · 31/08/2022 08:34

I had a sleep cap that I used while I was losing the last spikey hairs ,it helped nobody tells you that losing your hair hurts

TopOfTheCliff · 31/08/2022 13:27

Hi all especially @ItsHitTheFanNow We can be chemo buddies. I went through it all two years ago and my advice is Ask the Nurses and Take All the Drugs!

I have my treatment plan and it’s all happening fast. I’m going in to get my port fitted on Tuesday then straight on with my first dose of chemotherapy. I’m getting dose dense EC then paclitaxel, four of each every two weeks.
I will have to have the GCSF injections, probably filgrastim again, which DH is gleeful about giving me. He should have been a paramedic!
I am strangely calm and resigned to my fate this time. My hair fell out at 14 days last time. I never bothered with cold capping before and to be honest I may just go for comedy bobble hats as autumn is approaching. I’m not that keen on my wig and I sent all my nice Anna Bandana stuff to one of the gang on here.
I am trying to think what I need to sort out but I am going to Cornwall for the weekend and that will be a lovely way to spend the last few days before it all kicks off.
I am mindful of what happened to @MrsPnut so will be very careful with the nurses sticking things into the port!
I have been signed up to a trial of Yoga and strength conditioning during treatment which I am looking forward to. I really don’t want to get as fat and unfit as I did two years ago. DH has been implored not to keep bringing home cake!
I am off to the hospital to get some bloods and swabs done this afternoon. Everybody is being very kind and helpful. I have achieved notoriety on the chemo unit sadly.
Sending strength and love to all, and what lovely news about @Chicagocubs boy.
Top x

ItsHitTheFanNow · 31/08/2022 14:19

Thanks @TopOfTheCliff. All the best for your treatment.

Acinonyx2 · 31/08/2022 14:33

@TopOfTheCliff I would choose a port over a PICC (and either over neither). Is chemo same or next day? If same or next day I expect they will leave the needle in place ready (sounds as though that would be difficult overnight but it's surprisingly not). There seems to be a general move away from docetaxel to paclitaxel.

I'm sure it'll help that you're otherwise in good shape. Just stop trying to compete with @MrsPnut for unluckiest patient!

Hair grows back I felt like it was the least of my problems. I didn't love my wigs but just occasionally I wanted to blend in to the crowd or do a teaching zoom without alarming students. I used a silk night cap for comfort and for daytime - many, many beannies.

I struggle to keep up with all the newer ladies but may try to offer helpful comment if I can.

Otherwise often think of you @balkanscot and wish there was something more I could do than send sympathy across the internet.

MrsPnut · 31/08/2022 18:29

@TopOfTheCliff Even after all that happened, I’d have a port again. What I would never do again is have chemo at home.
Both my oncologists have never had it happen before (they trained together but have worked at different hospitals for years) in their 20 years in Oncology.
I hope you have a great time in Cornwall and best of luck for your treatment.

@ItsHitTheFanNow Good luck with starting your treatment too, it’s so much easier once you are on the travelator of appointments. Always counting down the sessions and looking to the next thing.

@Acinonyx2 I was talking to my favourite nurse practitioner this morning about my role as world’s most unlucky patient. I’ve been using lidocaine 5% ointment to keep the pain from my sores under control. They still show no sign of healing since April!
There is a manufacturing problem with lidocaine 5% ointment, not available for at least 2 months. She has prescribed many alternatives so I can see what works best but I have a 9 hour flight in less than 2 weeks and I’m going to need to be able to sit for that long.

TopOfTheCliff · 31/08/2022 18:40

@MrsPnut you can get patches which are impregnated with lidocaine to stick over painful areas. You can cut them to fit too, although the pharmacy dont like that idea.They can be prescribed by a GP too. Just a thought?
Top

MrsPnut · 31/08/2022 18:47

@TopOfTheCliff That might be an idea to try actually, it might protect the area slightly too. I shall discuss with the nurse during the week.

mowly77 · 01/09/2022 00:25

Hi @ItsHitTheFanNow Honestly it's not so bad once it starts. Waiting and not knowing how it will affect you is really hard. But once you get a routine going it'll be easier.

I've been on weekly paclitaxel since April, 3 weeks on, one week off, with a dose reduction of 75%. Weirdly I haven't lost my hair until now. I cut it shorter in June, but it just thinned and ... stayed. These last two weeks - yeah. Don't really want to shave it as I don't want to freak my 4 year old out, but it might grow back weirdly. I'm going to look into a wig but they tend to make me look like a clown (small head). I've got some culturally-appropriated cheap and colourful African print turbans that I like (my awkward white guilt made me apologise for wearing one today even though the (black) Sister on the ward was admiring it. Christ.) And now autumn is coming I, like Top, already have a range of comedy bobble hats. This is my second ride on the cancer fun bus & in 2011 with FEC pumped into me I tried cold capping but it was worse than the chemo for me! Hate being cold, still feel a bit funny when I get things out of the freezer. Bit of PTSD there. But everyone is different & they look different & more comfy than they were back then, lots of women on my ward use them.

My advice would be don't take the steroids and anti sickness unless you need them -- as they all give you side effects. Then you can't work out which is chemo side effect or drug side effect. I can't sleep if I have steroids, they just don't agree with me. I only have what they give you before chemo, along with Piriton, which makes you drowsy. I try and nap during chemo, I feel better afterwards if I do. Take a book; podcasts; layers for too hot /too cold; snacks; drinks. Can go on and bloody on with the waiting and the different faffing about. Hours. If I feel ok I can get a lot of admin done! There's wifi so I could even work should I feel inclined. I don't though. I listen to The Archers & doomscroll.

You might get on better with steroids etc, so I would suggest try everything once if you DO feel nauseous. If it doesn't work, tell the chemo nurses the next week, and they will give you a different one to try. There are many antiemitics. I have tried all of them. NONE of them work, I am v unlucky. I am always amazed when people say '...so I took an anti-sickness tablet and my nausea went away.' And I'm like: 'How? Why? What a miracle! You are blessed!' etc. But clearly they are designed to work, so they do, for many people.

Nausea is my main issue, starting on day 3. It was ok for weeks, as it would just be day 3 & 4, and then go away, & so I knew it would, & could mentally deal with it, then as the weeks wore on it stayed. I took a two week break recently and it's back to just 2 days. Cannabis helps it, tho', which isn't terribly practical sometimes. I told my oncologist when none of the drugs worked that I going down the CBD & THC route & she said she couldn't condone it. (actually she could have, as you can now get medical cannabis prescriptions in the UK, but I digress) But then she said 'between me & you, I've heard it works well' : )

Absolutely terrible diarrhea joined my party too, but that's easily solved with Immodium & eating a plainer diet, so I can cope with that. A young registrar was very excited to tell me that chemo is designed to hit fast-growing cells such as cancer cells (duh) but sadly anything gastric is also comprised of fast-growing cells too, hence gastric issues of all stripes, and the cells in your mouth too are fast-growing, so they'll be v. keen on asking you if you have mouth ulcers. I've never had one.

All the side effects are cumulative, so mine have got worse as the months have worn on. Tiredness is a given. I feel generally washed out and yuk but in no way at death's door. Mentally it might get to you. & chemo brain is real. I'm on antidepressants, which have definitely helped me, but that's a personal choice as I'm stage 4 & that's a horror show if I stop & think about it. I've done 13 sessions of pax. I'm aiming for 15. Possibly 18, but that will be it, because of risks of neuropathy which has luckily been fine for me. Will then transition onto a tablet and hormone form of treatment.

I hope I haven't made it sound worse than it is. I am AMAZED I have got through 13 Paclitaxels & feel relatively ok sitting here typing thousands of words. SORRY. & I haven't even had any steroids!

Final thing that I hope may be of comfort: when oncologist told me I was to have IV chemo, I cried and cried and cried (deviation from original plan of tablet treatment as I got v. ill and it all got delayed too much). But I've barely cried since. (anti-depressants are good for that...). I'm getting through it, & just accept good days and bad days. You can do it.

TopOfTheCliff · 01/09/2022 10:08

Today's challenge isn't really about me. I have a close family member who has a mental health problem. I am devastated that the news about my second cancer has caused them a relapse. I want to say really it's not that bad and I am fine and dealing with it but they are too ill now to take it on board.
Yes chemotherapy is hard and I am not looking forward to it, (who would!) but this is a just a small cancer with no apparent spread and in the big scheme of things shouldn't be life threatening unless I am very unlucky.
I hate that my news has had such a disastrous impact and feel very sad and guilty. It would have been impossible to hide it from them and they would have been more hurt if I had done so.
Gah! Cancer sucks in so many ways!

mowly77 · 01/09/2022 10:15

Oh Top that is very shit. Feeling incredibly guilty about diagnosis & the impact on friends & family seems to be part of cancer’s rich tapestry. Fuck off bastarding cancer!

thesandwich · 01/09/2022 11:57

Top that’s awful. Hope they can get some help. You’ve got enough to deal with.

AGreatUsername · 01/09/2022 13:37

I only got my Carboplatin today. I had another reaction to the Paclitaxel (at 14ml infused again!) despite the hyper sensitivity premeds. They were not happy to start it again then so my oncologist will need to think of an alternative I can have next time. What a bugger. If I’d know I wouldn’t tolerate it at all I may have stuck with just carbo and not had any hair loss 😢

mowly77 · 01/09/2022 16:30

ah bugger @AGreatUsername But on the bright side (haha) ask about Abraxane, it's the same drug but in a different formulation, not in a solvent like Paclitaxel, which is where the reactions & some of its many side effects come from. It is much more expensive than Pax so they only give it on the NHS if you literally have an allergic reaction to Pax. Which it sounds like you do. I know that may not seem like great news but Abraxane is apparently better tolerated (because of its formulation) & better at targeting cancer. It is also a quicker infusion so less faffing at hospital and no pre meds. Win win.

I know all this because I begged my onclogist to switch me over to Abraxane because I have some miserable side-effects on the Pax. From the research I did these are less common in Abraxane. And it sounds like it's bloody better than Pax anyway.

They would not as I'm not technically allergic to Pax. Utter bastards. Not their fault, NICE guidelines, underfunding and all that. But still, it's the only time in my life I've wished I was allergic to something.

Your hair loss may not be in vain!

Chocolateismyfavourite · 01/09/2022 16:35

Hello everyone 👋 someone on a thread of mine suggested I come on here, so here I am.

I'm 42, four kids who are 16,14,11,7.
Found out yesterday I have grade three triple negative breast cancer. What I thought was one big lump is two, 21mm and 27mm. I check my boobs regularly, it literally seemed to appear over night.

Anyway, I'm meant to be starting chemo 22nd September ( need to have an MRI on Monday first) they haven't rung with an appointment yet though. Then surgery followed by radiotherapy.

That's where I'm at really. Feels very surreal and I feel very calm, I think maybe because it's me and not my mum or daughter etc ( I'd be going out my mind with worry if it was them,)

AGreatUsername · 01/09/2022 16:38

@mowly77 thank you! Abraxane was the one the nurse mentioned as a possible alternative so that sounds good.

I’m in a right spin now though, my CNS has just got back to me about my tumour marker levels in the most recent bloods (after first cycle) and they’ve jumped up by 200 in 2 weeks. Which sounds awful. They’re now at 513 when normal is under 35! But, my CT on 18th August showed now sign of anything to worry about so I don’t know what to think.

NanaNelly · 01/09/2022 17:40

@AGreatUsername from bits of reading I’ve done I believe that it can take 3 rounds of chemotherapy before the CA125 levels return to normal.

mowly77 · 01/09/2022 17:46

oh that's shitty @AGreatUsername, I'm sorry. Is it CA125 they're measuring? My oncologist only started requesting tumour markers (125 & I-53 for me) when the Marsden told her to! She didn't think they were "helpful" but I think she wishes she works at the Marsden. I don't often ask about them as I find them stressful, but they tell me them once in a while. Can you get a call in to oncologist via secretary to discuss?

Hi @Chocolateismyfavourite I am so sorry you find yourself here. I haven't been here too long, since March, but it really is the most supportive thread on MN (that no-one wants to join). Yes, surreal & calm. I felt like that when I got home from hospital after my diagnosis. I did have a bloody big gin though as I had to call my parents & tell them & a couple of close friends & I had to do it quickly before I lost my nerve. It was awful. Mine is secondary breast cancer so doubly bloody awful. I had ER+ breast cancer in 2011; mastectomy; chemo; then found out I was BRCA2 so had another mastectomy & reconstruction. Then ovaries whipped out in 2019 so that was a fun surgical menopause. Oh, I'm 47, my daughter is 4, I have 2 cats & my favourite colour is orange. Please have a hand-hold, & there are lots of people more knowledgable than me on here if you have any questions as treatment starts. It's great you've got a plan in place already --- the waiting is a really awful hard part.

mowly77 · 01/09/2022 17:50

oh @AGreatUsername , @NanaNelly has a great point - because now I vaguely remember oncologist also saying that when treatment starts they may go up as treatment sort of breaks up the cancer cells & they travel around the body & may cause elevated numbers?? Sorry for such an unscientific explanation, wow, I blame chemo brain. But I would try not to panic (easier said than done) & talk to someone about possible reasons for elevation.

bodiddly · 01/09/2022 17:57

Hi all, I wondered if you could give me some advice please? I've been unwell with chronic kidney disease, failure, dialysis and transplant over the last 5 years. One year later and the original disease has come back into my new kidney which they believe is caused by a paraprotein in my blood that may or may not be cancer but will be treated with chemo as the NHS won't treat it unless they call it cancer.

I started a four day pulse of high dose steroids today and am already feeling pretty rubbish and am well aware that there is way worse still to come and will be starting RVCD chemo in about 2 weeks time for 6-8 months minimum.

My question is - I have about 2 weeks to get ready in terms of meal prepping, Xmas present and birthday present buying etc. Does anyone have any suggestions or tips on what I can get done to make life easier? Also, any suggestions as to what I should be eating and anything that might help it be a little easier? Thanks.

Chocolateismyfavourite · 01/09/2022 18:12

@mowly77 - thank you for the hand hold. The wait for the biopsy results was the worst. But I feel alot better now I know the news ( that no one wants to get) wow you have been through it. I don't know any names or what any numbers mean yet but I'm sure I will as time goes on.

SierraSapphire · 01/09/2022 18:24

@AGreatUsername did the CNS not tell you what the figures mean? Maybe call them tomorrow? It seems a bit early to be measuring, I don't think mine will be until the fourth treatment. Or was this the starting measurement? Good news that abraxane might be possible and better though.

I had my second chemo yesterday and felt sick overnight so didn't sleep much (also either too hot or too cold) - it felt like a bad hangover this morning, but as hangovers it seems to have worn off and I'm just tired now. I need to sort out the hot flushes though. I cold capped again (and wore ice slippers, which were worse) but I'm shedding quite a lot today and have resorted to the headband. The uncertainty of not knowing how much I'll lose is getting to me a bit.

Hello to new people and sorry you're here, the early days are horrible Flowers

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