Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

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Thanks Sierra, advice given is to continue to watch the symptoms if they grow worse to report it again. Fingers crossed it gets better.

I am learning to cope with hot flushes during the night as they wake me up, not going to ask for more medication. I hate cancer.

Oh God the hot flushes (which is why I am here at this time). Sleep has become such a struggle. My oncologist’s only advice was not to nap during the day.
It does indeed suck.

Sympathy to you both.

Am another one struggling with hot flashes, and well, being hot all the time. I went through menopause prematurely and HRT was a godsend for this, as well as halting every other terrible perimenopause issue I was plagued with. After my BC diagnosis, was probably more upset at having to stop HRT than anything else, even though it was my decision to do so.

I asked my GP put me on an antidepressant to stave off hot flashes, night sweats* and keep my mood stable. I was prescribed 20mg fluoxetine which worked really well for the first month, but since surgery, god, the hot flashes and night sweats are back with a vengeance. Had actually forgotten how debilitating they (and the ensuing sleep difficulties) were, to the degree that it is really making me not want to take hormone therapy because I know it will only get worse.

*Am back to sleeping with a cotton top sheet, and layers of cotton blankets (to which a wool one will be added when the temperature drops). I found this was better than a duvet as it gave me greater control of temp.

Hope it was an ok, and that sorely port settles

I only got hot flushes for a few months at end of chemo then not had anything much, wake up too hot sometimes and need to drink water but generally OK. But the insomnia is full on and I cannot sleep at night and don't sleep in the day comment😂I am glad when I can sleep ever and it's hard to sleep in day too. I seem to manage to do things OK but doesn't do much for my tolerance levels. I also don't want more meds and also was told by oncologist not to take a whole load of anti depressants as they interfere with Tamoxifen and stop it working. She named a few I could take, one began with V. Flux was one of the banned ones if on Tamoxifen. Though they never tell you this unless you ask.

I did even resort to an alcoholic drink once to sleep, it worked but decided that probably wasn't best way forward. Then saw someone taking nytol and looked up ingredients and saw was anti histamine. Tried anti histamine and was knocked out for 8 hours so that worked. Not sure how wise that is either but it worked and know I can take those for hay fever with Tamoxifen. I didn't find Tamoxifen made things worse but did just keep insomnia going. Though tbf it may not have been possible to make insomnia worse.

Hope infection starts to go with antibiotics Make they normally do though sometimes need more antibiotics but call any signs symptoms worsening. Ours would still let you call chemo line after finishing for a few months for advice for something like that.

@Silkierabbit Will investigate Nytol/antihistamine, thanks. I was prescribed zopiclone but it didn’t stop me waking at 4 so I stopped bothering.
I will ask about reducing steroids though as I haven’t had issues with nausea and they’re not really something I like putting into my body.

I found the steroids awful and got worse as it went on though they said as I was on weekly chemo there are more steroids. When they let me reduce them, just had the one pre each chemo things improved a bit. They give far too many additional meds and make them sound compulsory. They normally calm on the steroids if you have not reacted to first couple of chemos and you request a reduction. I hated those steroids more than the chemo. Made my face swell as well.

I’ve taken antihistamines in the past when I’ve had trouble sleeping. I was thinking about hrt again today. I wonder if it might help with energy levels.

Well I got to Tasmania - ferry ride was fine and we had a nice cabin. Have driven loads today and visited Cradle Mountain which is very beautiful. Great scenery here!

Also saw about 15 wombats all happily munching away on the grass!

Tasmania sounds wonderful Fairywren glad you got there. I was told no hrt with hormone positive but I find the more I swim the more energy I have. Its strange how that works and you have to build up but I am full of energy with that. Doesn't help the insomnia though. Presumably any exercise would do similar. And there are after effects from radio and chemo for a few months before they get better re energy.

Do you have any wombat pics, I only saw them in Featherdale zoo not in wild but they were great.

Wombat pics please!
and interesting re steroids. Will deffo ask for a reduction.

@Silkierabbit Am being treated at Bart's and the outset, I asked re. Tamoxifen before I started taking Fluoxetine as I had read that it (and other) antidepressants could have a detrimental effect. I was told no, it's fine to take, ditto Vagifem, both of which were approved by my surgeon and oncology. They even wrote to my GP confirming it was fine.

Am still taking melatonin as HRT never really solved my sleeping issues. Mine is prescribed by a private pharmacy (where I also got my HRT) as the NHS wouldn't prescribe it for me. If it wasn't for this, my insomnia would very much be back rather than just waking up several times a night.

Over the counter, I found Boots' Sleepeaze pretty good, although didn't want to get into the habit of taking them regularly. If I am having a particularly hellish night, I take a antihistamine that isn't a non-drowsy one

That's strange Double as my oncologist said it was a definite no to combine and nice advice seems to be don't use together.

https://bnf.nice.org.uk/interactions/fluoxetine/

There were about 3 she mentioned could be used and no adverse effect, I remember one began with V and quite long.

This seems to list anti depressants by category to be avoided.

https://womensmentalhealth.org/posts/clinical-update-2019-tamoxifen-and-antidepressants/

@Silkierabbit thank you for that, your comment about them giving too many meds and making them sound compulsory really resonates. I'd rather have the nausea than the insomnia!! I shall ask tomorrow if anything can be reduced.

@Silkierabbit was it venlafaxine?

I want to see a wombat please @FairyWren7

I am preparing for my trip to Dartmoor for the Open Studios. I m going to create a Highland Coo knitted hat to go with the sculptures my friend makes. It’s a challenge!
I am feeling a bit poisoned today. I’ve got random prickly neuropathy all over. I will try drinking lots of water and see if it helps. One day left and ten pills of round 6 Cape to go. Ugh.

I originally was told I had to take 6 ondasetron a week to stop sickness and then was given more meds to stop constipation. It was silly one or two ondasetron a week was sufficient and none of the other one. Steroids got halved and so much better. But initially they were given to me in a way like you must take these like you would tell a small child and I thought chemo wouldn't work without them but they have no effect on success. Some nurses are very chilled about you cutting them out, others seem to think you need every med going and more meds to combat other meds side effects, for me less was much better. I had to be a bit insistent though. Some people seemed to be given 2 carrier bags of meds thankfully mine wasn't that bad but was still about 5 times what was needed. Quite a rare issue on NHS.

Yes that's the one Top.

And wanting pictures of all that Australian wildlife.

Hi there, I hope you don't mind a new person joining in, I've been reading your thread for a couple of days.

Basically I've found a lump in my right breast and have been referred to the breast clinic, I got my appointment through for a week on Friday, which I know isn't too bad, but it feels like a very long time too! On the advice of my GP I've stopped my HRT for now (so have been back to the symptoms you've just been talking about).

Fingers crossed it's nothing to worry about, but I'm a dreadful worrier. My dh is steady as a rock though, he's a GP and so knows the process, which is very helpful. He's coming with me to the appointment.

Thanks for "listening"

@weegiemum it's a very worrying time and I am keeping fingers crossed that it's nothing to worry about. If it is, you're in excellent company here! Many of us found the wait until diagnosis very difficult indeed and it does seem to take so long.

@Fairywren absolutely beautiful, places like that are good for the soul. Also down for wildlife pics!

Well, I've been back to work for coming up to four weeks and my manager sent a slightly snotty email today basically saying well, your four weeks are up I presume you're going back up to full time from next week. Tbh I was a bit taken aback as she's normally very supportive and reasonable. Maybe she was just having a bad day.

Currently debating what to do. They won't force me back full time yet (or at all really, if I pushed for that). I feel like I could physically manage full time but it would be a bit of a push...or maybe I've just gotten used to having the extra time to go to the gym etc!

I think that's the crux of the issue; being part time has given me the chance to focus on my health and regaining my strength and fitness. But should I be prioritising that over work? They've been great, have kept me on full pay throughout etc and up until now have genuinely been concerned about my wellbeing.

I kind of feel like because I've been quite positive about my recovery they think I'm back to 'normal' and I suppose to them I am - they don't see me falling asleep on the sofa or having to plan things to ration energy etc.

I think I'll offer to increase my hours a little but not go back to full time yet.

@Silkierabbit exactly!! I got armloads of domperidone and ondasetron. If I see my consultant tomorrow I'm going to interrogate him about exactly what's necessary!

@weegiemum welcome and let's hope your stay with us is short and sweet. It's great that you have a supportive partner. Try to distract yourself from worrying. We have a saying here "Don't borrow tomorrow's sorrow" so try to stay in the present and not run ahead of yourself. If it's not good news we will talk you through it so try not to Google. Just stick to NHS or Macmillan or Breast Cancer Now sites.

@ClashCityRocker don't be bullied or manipulated into going back too soon. You have to look out for number one as nobody else will. They all have their own agenda. Hopefully you will only do this phased return once so don't let them rush you.

All quiet at Tops Towers today.

I'm finding the chat about unnecessary meds interesting. I was wondering last night what's actually needed.

I have lansaprozole, ondansetron and rampipril going on. Was wondering about dropping the lansaprozole after chemo - I only kept it after the first drain because my consultant said the chemo could make people acidy. The nurses in the chemo unit are constantly offering top-ups of the ondansetron which I've barely used. And no-one's ever followed up on the mystery heart thing which they gave me the ramipril for. I can't remember the last time my bp was checked &, last time it was, it was still high. But that seems to be normal for me from what I can gather 🤷‍♀️

I'm going to ask next week & see what response I get.

I've just completely baffled myself. Got out some nicer than Primark practise lashes to put on for tomorrow (so dd1 could check they look ok - she won't have time tomorrow morning). Plonked lash on mine to measure, turned to answer something dd1 had said & ... poof! Vanished lash. Hunted high and low, not a scooby where it's gone to 🙈🤣

Ah I got given odenestron and cyclizyne (?) for anti sickness, and lopermide for diarrhea plus dexamethasone (steroid)

I never actually took any apart from the dexamethasone, bar the first week.

I remember when my late husband was going through pretty much the same treatment he ended up on lots of different medication, as X medication caused Y so needed Z to sort that out, repeat as nauseum. I think at one point he was on about eighteen different ones which was great fun as by this point he could only take them through his feeding tube and apparently a lot of them don't come in liquid forms. It used to take about an hour to grind and prep all his meds. Needless to say I don't think many were necessary and by the time he was terminal for his last three months he just had the syringe driver (pain relief and anti sickness) and top up morphine.

I had always had terrible reflux and was prescibed Pantoprazole after my bowel surgery as the combination of not being able to eat anything plus lying down all day made it 10x worse. I kept taking it through chemo as it was recommended but gradually wound it back. Now post chemo I have totally stopped it and my reflux has completely disappeared. I don’t know if it’s the cancer/chemo, losing weight or the fact I barely drink alcohol these days (or maybe a combination of all 3!) I didn’t even make it through a single packet of metoclopramide in 4 rounds of oxaliplatin plus cape but I probably exceeded my body weight in loperamide capsules!

I have a question about peripheral neuropathy. I am 8 weeks post oxaliplatin, 6 weeks post cape. My hands were pretty much better with just a tiny bit of numbness on the ends of my fingers. And the soles of my feet were numb but not painful. This week the neuropathy seems to have got worse? My hands are more numb and my feet are uncomfortable. When I lie in bed at night it’s like my whole foot is numb. And when I walk I have that walking on gravel feeling, though not as intensely as during treatment. I’ve recently been discharged from oncology and of course this happens two days later! I have a GP appointment tomorrow but I doubt she’s going to be an expert in this. Anyone know if it’s normal to feel worse this long after chemo? I’ve gone back to work this week, but just 2 days a week working from home.