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Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

971 replies

LemonDrizzle10 · 24/02/2024 17:59

Shiny new thread.

OP posts:
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JlL2013 · 15/04/2024 17:18

@Enigma52 was told to take vitamin D to help with iron absorption, am low in both. Lucky me.

Enigma52 · 15/04/2024 17:20

@KentishMama Whilst the posh gown and coffee, sounds nice, I would probably refrain from accepting images ( unless I knew an medic who
could interpret immediately!)
Well done on the vein front; that's skill!
At least noisy MRI is over now.

@Whatevershallidowithmylife
Fingers crossed for your CT and plan for going forward. It's all relentless, that's for sure!

Enigma52 · 15/04/2024 17:21

JlL2013 · 15/04/2024 17:18

@Enigma52 was told to take vitamin D to help with iron absorption, am low in both. Lucky me.

Ah I take vitamin D; the Better You high strength spray. Any good do you think?

Enigma52 · 15/04/2024 17:23

JlL2013 · 15/04/2024 17:15

@Enigma52 sounds really frustrating, allow yourself a bit of time to recover, easier said than done though.

It's just shit, just need a good nights sleep and I'm sure it will all seem better.

Yep, shit with a capital S.
Unrelenting shit.
Oh well, onwards and upwards I guess! Or wine and chocolate!

JlL2013 · 15/04/2024 17:26

@Enigma52 I'm just on the tablets from boots at the moment, got to go back for more blood tests in three weeks so I'll let you know.

Iron has not recovered from chemo 18 months ago, had to have a transfusion. Doesn't help that I'm a veggie either

JlL2013 · 15/04/2024 17:33

@Enigma52 wine and chocolate outside, to help with vitamin D sounds like a great plan.

KentishMama · 15/04/2024 17:36

How about iced coffee and chocolate in the sun, will that help? Because then I'd join in...

Enigma52 · 15/04/2024 17:49

JlL2013 · 15/04/2024 17:33

@Enigma52 wine and chocolate outside, to help with vitamin D sounds like a great plan.

@JlL2013 Let's do it! 🍾🍷🍫☀️🌞
Plus maybe a square of good quality dark chocolate ( for extra iron!)

Enigma52 · 15/04/2024 17:51

KentishMama · 15/04/2024 17:36

How about iced coffee and chocolate in the sun, will that help? Because then I'd join in...

@KentishMama Yes, even better! But we are not going to attempt to interpret scan images; just enjoy the 🌞 and iced coffee...

JlL2013 · 15/04/2024 18:07

@Enigma52 absolutely dark chocolate for medicinal purposes of course.

@KentishMama by all means join with a soft drink of choosing but I think we'll be fairly shit looking at them even before a few glasses of wine.

Does red wine have iron in it? It looks like it should?

Zoopet · 15/04/2024 18:27

Hi.
Me again.
Thanks for your thoughts and comments re mastectomy/lumpectomy.
Still not made a decision, will have to wait for MRI results in a couple of weeks.
New issue is that my chemo was stopped 2 weeks ago because of side effects.
I had had 12 sessions in all and there were 3 outstanding.
I still feel terrible!
Exhausted, having frequent sleeps/rests during the day and maddening neuropathy in hands and feet which makes me clumsy and stumble a lot.
I didn't expect to bounce back after chemo (or perhaps I did) but is this normal or should I contact the breast cancer nurse?
TIA. X

catmomof3 · 15/04/2024 18:48

Had hoped I would have got a call to book my PET scan today but nope. I know the timescale is something like 62 days from referral to treatment and I'm in only 18 days in but I'm impatient.

Also it seems I might be offered introduction chemo for a few weeks before chemo/radiation/brachy as this is a new thing for cervical cancer treatment. I guess I'll find out soon but it means I likely will lose my hair (which is fine) just worried I'll have a cold head. Do you know if the wigs on the NHS are actually free if you're on certain benefits (I'm on ESA) or you get money off a wig?

Zoopet · 15/04/2024 19:23

Hi @ catmomof3
I was given a NHS wig free of charge.
I was worried re quality but it is great and easy to look after.
I was also given special wig shampoo and conditioner, so don't worry!
I had a choice and a wig fitting through the hospital. X

catmomof3 · 15/04/2024 19:25

@Zoopet Oh that's good to know, I did google to see what they might look like but couldn't come up with anything. How long did it take to get a wig if I may ask?

Zoopet · 15/04/2024 20:04

I was offered a wig fitting before my chemo started, so a couple of weeks after diagnosis. X

SummerCycling · 15/04/2024 20:09

Before starting chemo (Epirubicin, Cyclophosphamide, then Paclitaxel) I was just told I would definitely lose all my body hair and all my hair on my head. No help or support offered, nothing. No advice about wigs, hats, nothing. No financial support or suggestions. I had no idea what to do so found a wig shop online and wasted a load of money on a wig that didn't suit me and that I never wore.

I asked my hospital MacMillan CNS who said only people on very low incomes get help with wigs. She was (as she often was on a lot of things) completely wrong, but I hadn't learned that yet and believed her.

Thank goodness for this thread so others here don't have to feel so totally abandoned in so many ways as I did on chemo in 2022.

SummerCycling · 15/04/2024 20:32

@demivolte Great to hear you got pCR!

Will you have radiotherapy or don't you need that now?

AFAIK Phesgo is preferable to Kadcyla for side effects which makes sense. Those were my two options depending on response too, and I also continued on Phesgo. After the onslaught of EC chemo (utterly horrific for me, I know others sometimes cope so much better on it - our bodies are amazingly different) and Paclitaxel then Abraxane, I doubt I could have managed yet more chemo physically or psychologically.

@JlL2013 I had low ferritin for years unless I took supplements and found Ferrous Bis-Glycenate great - it increased my levels of ferritin and iron with no side effects. It's also called "Gentle Iron" and I used Solgar. I took about 60-80mg a day.

https://solgar.co.uk/products/solgar-gentle-iron-iron-bisglycinate-20-mg-vegetable-capsules

I also found that taking some Vit C with it helped.

My Vit D was also too low, as is the case for most people in countries like the UK except in summer. if you're thinking about which brand to chose, I take Solgar for that too:

https://solgar.co.uk/collections/vitamin-d

(I don't work for or have any connection to Solgar!)

@catmomof3 I heard about that too, the 62 day limit between diagnosis and treatment starting for cancer. I knew I had cancer 8 weeks and 4 days before starting treatment (chemo) for a stage 3, grade 3 cancer, which if my tired brain could calculate, is probably JUST within that time limit. I really hope you can start sooner, it was torturous and scary waiting and I could even feel the cancer spreading to higher lymph nodes. Your tests are progressing at a much faster rate than mine did, so I think you're on track to start treatment sooner xxx

catmomof3 · 15/04/2024 20:54

@SummerCycling I'm so sorry you had to wait that long. I'm really hoping my treatment will start by the 2nd week of May but who knows, my nurse said we are ahead of the game already so I'll trust her for now. I just want to get started now, my tumour is pressing on all the nerves in my pelvic and I'm fed up of taking pain killers now.

JlL2013 · 15/04/2024 21:00

@SummerCycling thank you for those links. I'll definitely give them a go. I'm not sure how it's possible to be this low on energy but not be able to sleep.

Hopefully the Vit D will improve with the summer on its way but will help with the iron absorption (I think) I do a vitamin C tablet and Vitamin C drink every day (possibly too much Vitamin C but I think your body gets rid of that on its own)

TopOfTheCliff · 15/04/2024 21:44

I’m pretty sure it’s Vitamin C to help with iron absorption @Enigma52 . The Vit D won’t harm though, just avoid taking the iron with any dairy products. Also the iron liquid is a bit weak compared to ferrous sulphate or fumarate tablets. Look at the daily dosage to see how they compare. You need a decent dose to boost the Hb properly. 85 is low enough to make you feel really bad. It takes about a month to take effect.

@catmomof3 here in Devon we all get a wig voucher from the chemo nurse at the briefing session. You hand it to the wig fitting lady when you have chosen one. It is done through the Macmillan centre at our hospital. Others will differ no doubt.

JlL2013 · 15/04/2024 22:17

@TopOfTheCliff or anyone else what do you recommend for low iron. I've just looked at my results and the ferritin level is 12 ug/l which is low but not too low by the looks of things.

ShalommJackie · 16/04/2024 01:30

Hey all, I'm a bit more active on the stage 4 thread but it's quiet on there at the moment for good reasons and I don't want to ask there.

I'm having an urgent colonoscopy on Friday because I've got lymph nodes near my bowel that are a Bit active on my last pet scan.

How horrible is this going to be ?

Florsilvestredelcampo · 16/04/2024 08:20

@ShalommJackie I've always found the procedure itself okay. However the prep is vile(sorry to be so blunt) and I honestly find that the worse bit. During the procedure they will offer drugs and I always say to people take the drugs! X

Enigma52 · 16/04/2024 10:05

TopOfTheCliff · 15/04/2024 21:44

I’m pretty sure it’s Vitamin C to help with iron absorption @Enigma52 . The Vit D won’t harm though, just avoid taking the iron with any dairy products. Also the iron liquid is a bit weak compared to ferrous sulphate or fumarate tablets. Look at the daily dosage to see how they compare. You need a decent dose to boost the Hb properly. 85 is low enough to make you feel really bad. It takes about a month to take effect.

@catmomof3 here in Devon we all get a wig voucher from the chemo nurse at the briefing session. You hand it to the wig fitting lady when you have chosen one. It is done through the Macmillan centre at our hospital. Others will differ no doubt.

I knew low levels of HB were an issue.
Mmm.. what do you suggest I take to try and boost them up? I don't have my blood tests until next week. Maybe i need an iron infusion? I do feel at rather grim.

Penguinsa · 16/04/2024 15:11

ShalommJackie The actual procedure I was sedated for so was fine, the prep is really vile - like a very bad 1970s chemically drink and industrial quantities of it to drink (yum) and you need to reserve a toilet for yourself for 12 hours or so for as soon as you start taking the prep with instant access. Not something I'ld be keen to repeat but 12 hours or so of being a bit grim so fairly short lived.

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