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Cancer Support Thread 87 - everyone here is so supportive.

983 replies

LemonDrizzle10 · 22/05/2023 05:53

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WorryMcGee · 08/06/2023 01:06

@FairyWren7 my last chemo was 14 weeks today, although the majority of my hair fell out a week after my last one and that’s when I shaved my head as I couldn’t take it anymore, so it’s 13 weeks really. I have hair covering my whole head now, but it’s only in the last week that I’ve had enough on the crown of my head to feel like my head is covered if you know what I mean. My hair has always grown v slowly. I’m taking biotin, using the horse shampoo someone recommended upthread 😂 and putting a serum by The Ordinary on my scalp every night.

AllotmentTime · 08/06/2023 06:31

Good yoga app (well I like it) is Down Dog, @WorryMcGee @Atreus / anyone else who's not sure whether to get back into it.

downdog.app.link/share

Can't preview links on the app but hopefully that'll work.

You do have to pay, it's £10 a month, I think I got a free trial to start with but can't remember now. You can customise pretty much everything, the difficulty, the voice, what area to focus on, breathing instructions etc.

HTH 🙂

Remaker · 08/06/2023 07:42

I am halfway through my chemo!

I took the last tablets of this cycle last night, now a few days break til infusion 3 of 4 next Wed.

My feet are hurting and I have a headache but otherwise not too bad.

Frustrated that I feel well enough to exercise but my feet are holding me back.

Lisdeflores · 08/06/2023 07:52

I've got a Phone call with my oncologist today to discuss starting Niraparib I will be on the tablets for as long as they work and I can bear the side effects. It's making me nervous.

lucysmam · 08/06/2023 08:33

Morning everyone 🌞 I hope you're all doing ok (as ok as can be, anyway!).

@Remaker that does sound frustrating 😢I've found a lot of this whole process frustrating but the "want to do it but can't manage" is the worst.

I've been asked to do a couple of crafty bits for work 🤣 good job I don't mind sitting & painting or making things really & it'll fill the time where I'm wondering wtf to do with myself because I'm bored of the rest of it!

I'm still a bit uncomfy after my drain on Tuesday so a very steady day is in order again. I actually want to go to Lidl but think going for bloods then mooching at home is probably a better idea 🙄 I don't seem to be filling up again yet though, which is promising - Last time it only took a day or so to start. I feel slightly obsessive about it but it's the most vile I've ever felt & I hate not being able to dress in my clothes/feel properly like me 😢

dotty2 · 08/06/2023 08:44

@Lisdeflores - hope the call goes well today. And more to the point, I hope the side effects are tolerable and it works for a long, long time. It must be tough facing uncertainty about both those things - how it will make you feel and whether it will work. Sending positive thoughts.

On the discussion about radio etc, I ended up with a 7 week gap after chemo, and it would have been longer if I hadn't chased - there had been some sort of admin hiccup, and then further delays because my treatment was not quite standard. I had 19 sessions - 15 to my whole breast, chest wall and collar bone nodes, and a boost of 4 to the tumour bed. I felt physically fine all the way through, but found it tough emotionally. I have felt more fatigue afterwards though - I finished just over two weeks ago and have possibly been overdoing it since. I did a maybe over-ambitious work thing yesterday and felt fine and positive on the drive there and for the first half of the day, and like I wanted to cry for the second half of the day. I had a terrible attack of impostor syndrome and then hit bad traffic on the way back which took three hours, and was utterly wiped out by the time I got back. I've never really experienced fatigue before and find it hard to describe - it's not sleepiness, it's just like there's nothing left in my physical or mental tanks.

HerbalRefreshment · 08/06/2023 09:50

@Lisdeflores I am on olaparib, a similar drug, and its been extremely easy - no neutrophil tank and after the initial six week adjustment to the gastro track its been no problem.

WorryMcGee · 08/06/2023 10:00

I have a question about periods/menopause. So my period had returned after having DD as I stopped breastfeeding for obvious reasons, but stopped after my first EC chemo (I had some spotting at Christmas but nothing like an actual period). Last chemo was March 2, no sign of my period returning. I’ve been getting hot flashes, terrible night sweats that are worse if I’ve had alcohol, I feel very dry down there all the time, and I often feel like I’m getting a UTI but it never happens. I’m 37. I’ve not taken any Tamoxifen so it can’t be that. Could it be menopause just from chemo or is it just side effects and it might go away?

Lisdeflores · 08/06/2023 10:21

Thanks @HerbalRefreshment &@dotty2 I think it's just the thought of going on to something new that's got me in a tizz but if these are the tablets that extend my life expectancy I very much want to start them x

Scandimandy · 08/06/2023 10:25

That definitely sounds like menopause symptoms @WorryMcGee although might be temporary, did they tell you beforehand that chemo might put you into menopause?

WorryMcGee · 08/06/2023 10:33

@Scandimandy all I remember being asked was “have you completed your family” and at the time I was in a non-sleeping vomit covered reflux baby nightmare so said something like “I never want to do this again” and they said “that’s good as we don’t recommend you become pregnant again, even if you can”. Just looked at my letters from that time as well and all it mentions is that we had a discussion about fertility (which I guess is what I remember)

Silkierabbit · 08/06/2023 10:36

Worry I had hot flashes and night sweats for the 3 months after chemo and worsening neuropathy and no periods, was on Tamoxifen for a month of that and sugar seemed a trigger for night sweats (My fleece bedding probably wasn't helping either). Since then it's calmed down, no periods for over a year now so in menopause but I was only a few years off natural menopause. My bloods taken in chemo for hormones where as high as you could get for menopause. I think you have to wait and see with periods, it's 12 months before your officially in it but those are symptoms of menopause. It's a bit hard though I remember I had chemo, radio and Tamoxifen, triple joy. But now I just get a few mild night sweats, bone ache, ranty and memory suddenly goes but if think hard it's all still there.

WorryMcGee · 08/06/2023 10:49

@Silkierabbit did you ask for a blood test or was it just something they did? I would like to know what’s going on…
I general I feel like I’m missing a lot of info that I want to have. Like all the tests they can do on tumours, is it Oncotype DX or something, and the Ki 67(?) thing you see on the Predict tool - I don’t think anything other than the hormone markers and the grade were done for mine. I really feel like I don’t know what my body is/was doing ☹️

Fantasea · 08/06/2023 10:55

@Lisdeflores I've been taking Niraparib since September 2021. I had mild nausea, nothing like infusion chemo, at the start but that wore off after a few months - I got it mainly in the morning about an hour and a half after I'd taken the tablets. Now my appetite is enormous, I could eat all day! I've had thrush in my mouth at one point and get the odd ulcer every few of weeks, but a day or two on the mouthwash sees them off. My ongoing symptoms are tiredness and constipation - again, nothing like the infusion chemo, but I take lactulose most days at a low dose to keep things moving and need an afternoon sleep at least two days a week. For all of it though, it's very manageable. I understand your apprehension, I was the same and was frightened to take the tablets at the beginning. The list of side-effects is terrifying, it looks from that as though everything could go wrong but for me, I can honestly say that I've got away quite lightly. I'm hoping it's the same for you too.

@lucysmam I had 5 ascitic drains, three of those were 10 litres each, and I was having them about every 3 weeks at one point. I was offered the semi-permanent drain on the fourth drain but I had chemo starting quite soon after that and that prevents re-accumulation so I declined. I also didn't want something 'there' in me if that makes sense. I have huge disfigurement issues and any reminder like that would have been difficult for me but I was tempted by the facility to drain a bit off at home. I was also worried about it being an infection risk and fretted over having to get an appointment (during Covid) to get it changed. Same as you, at one point, I was filling up a few days after a drain and I also have never felt worse in my life.

Scandimandy · 08/06/2023 11:10

I feel the same @WorryMcGee with regards to lack of information. I sort of understand why they don't talk abut everything because not everything is relevant to everyone but we don't know what we don't know so we don't know what we should be asking about/for - its places like this that educate us in that regard.

Silkierabbit · 08/06/2023 11:10

Worry I didn't ask for bloods but they just kept taking them. You could ask for them, it's something like LSH, FSH, it's the hormone bloods anyway. I had the prosigna as well which is UK oncotype but don't have that ki67 thing and also oncotype results were same as Predict Breast results. In our hospital its 3 to 5% benefit for chemo gets free prosigna, I was 6% but managed to negiotiate. Though it did delay chemo start but I prefer numbers to words so it satisfied my desire for more numbers. So sorry you can't have another child.

Scandimandy · 08/06/2023 11:32

Anyone currently listening to Jeremy Vine re the cancer treatment delays?

lucysmam · 08/06/2023 11:33

@Fantasea did the chemo eventually stop it filling back up? They did mention being able to drain a bit at home & it is tempting but I don't really want any extra bits to think about tbh & the draining is...well...draining as fuck tbh. I'm really hoping it stops - it does seem to be slowing down significantly.

Scandimandy · 08/06/2023 11:34

Correction - he's not on until 12!

ClashCityRocker · 08/06/2023 12:58

Is the rage room free?

Day after chemo today and man the steroids are doing my head in! I just can't seem to sleep at all on them, had two hours of not much more than dozing last night and feel so wired and angry today.

Plus chemo brain has totally kicked in so I turned up at the hospital three hours early for treatment after reading the wrong date on my appointment sheet. Also buggers my plans for the afternoon but it's my own fault really.

To top it off my brother has messaged for the first time since I've started treatment asking me to feed his cat whilst he's away. His one concession to the fact I'm going through cancer treatment was asking if my partner could do it instead if I wasn't up to it. I'm pissed off he hasn't been in touch to see how I'm doing until he actually needs something from me. Tosser.

My bladder better bloody play ball today!

dotty2 · 08/06/2023 13:56

@ClashCityRocker Of course. Sounds like you could do with a double session. As long as all the smashing isn’t too much for your bladder…

EachandEveryone · 08/06/2023 14:41

@ClashCityRocker you need Zopliclone its the only thing that works for me. It will only be two nights then it returns to normal until the next session. Wait while you start eating everything in sight as well.

Talking of chemo brain today I woke up and took the rubbish out thinking it was Wednesday. All day Ive thought it was Wednesday. Then I got on the wrong bus to Reiki and didnt realise til halfway so I was late for that. Then I came home and dropped a full pot of yoghurt on the floor. Im literalky dropping things all the time. Is anyone else? Ive got blinking mouth ulcers. After five months I thought maybe id escaped them.

Fantasea · 08/06/2023 15:36

@lucysmam I had a drain after my first chemo which was 10 litres then another after my second chemo which was only (only) 3.5 litres and after that it stopped so the chemo (6 cycles) was slowing it and preventing it refilling. Having a large amount drained at a time made me feel really weak and also gave me awful abdominal pains which was why I was tempted by the semi-permanent drain. I was told they 'last' 28 (it might have been 30) days before they have to be removed. There is some sort of 'cap' you have on the outside of your skin which you lift off to plug in when you want to drain and the fitting process is the same.

lucysmam · 08/06/2023 15:43

@Fantasea thanks, that's reassuring. I haven't had any pain, but it is uncomfortable & I'm really gassy afterwards (presumably the pressure on my bowel releasing - the Registrar didn't say otherwise when I queried it yesterday).

I think I'll hold off a little longer before going for the more permanent option & see what it does - it's definitely slowed down. The second was 7 and a trickle L accumulated in 3 days, and this weeks was 6L accumulated over 2 weeks.

I don't particularly want something else to be conscious of - the tiredness & constant "go go go" of appointments is enough...that and the eating everything that's not nailed down! Good job I do need to put on another stone or so.

Lisdeflores · 08/06/2023 15:58

Thanks for our message @Fantasea I've had my Phone call I start Niraparib tomorrow. The oncologist was planning to start it next week but brought it forward because I'm going on holiday. After tomorrow when I pick up after a blood test the tablets will be delivered to me