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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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25
TopOfTheCliff · 16/04/2024 15:45

https://bnf.nice.org.uk/treatment-summaries/anaemia-iron-deficiency/

Ferritin levels below 50 can make you tired and thin your hair. Levels below 15 will make you anaemic too, and maybe give you restless legs. The dose of oral iron needs to be enough to give you around 60mg of ferrous iron. See the above BNF guidance for more info on preparations. Interestingly if you can absorb the iron okay it is just as quick a response to take tablets as it is to have an IV infusion. Lots of different food affects absorption too. Interesting!

Anaemia, iron deficiency | Treatment summaries | BNF content published by NICE

This treatment summary topic describes anaemia, iron deficiency

https://bnf.nice.org.uk/treatment-summaries/anaemia-iron-deficiency/

JlL2013 · 16/04/2024 20:18

@TopOfTheCliff thanks so much for that. Really helpful. No wonder I'm tired, with thin hair and restless legs.

catmomof3 · 16/04/2024 20:23

@JlL2013 I take gabapentin for restless legs it works amazing, if it gets that bad you could ask your doctor about it?

JlL2013 · 16/04/2024 21:37

@catmomof3 Thanks will ask for that when I go back to the docs. I've suffered with it for years.

catmomof3 · 16/04/2024 22:23

@JlL2013 It's horrible, I was on pramipexole first for like 6 weeks but it made me so obsessed with food it was weird so I came off that and was put on gabapentin and not had a problem since. Can make you super drowsy though.

JlL2013 · 16/04/2024 22:52

@catmomof3 might help with the insomnia 😊

catmomof3 · 17/04/2024 06:26

@JlL2013 Ah yeah you are right

Enigma52 · 17/04/2024 07:28

Off to The Christie hospital this am.
Felt so ill last night.
Dizzy/ cold etc
Maybe I will get a transfusion?

Whatevershallidowithmylife · 17/04/2024 07:44

@Enigma52 hope you feel better soon 🌺

Enigma52 · 17/04/2024 07:53

Whatevershallidowithmylife · 17/04/2024 07:44

@Enigma52 hope you feel better soon 🌺

Thanks. I do hope so 🌞

JlL2013 · 17/04/2024 08:49

@Enigma52 hope you get your transfusion, can make you feel better very quickly. Hope they don't keep you waiting too long.

demivolte · 17/04/2024 10:34

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

@SummerCycling thank you. I was relieved that I didn't need to go onto kadcyla as I had been told it is more toxic than phesgo and I don't think I would have managed well with the thought of more chemo. I won't need any radiotherapy so the next phase will hopefully be reasonably straightforward.

demivolte · 17/04/2024 10:36

@Enigma52 I hope you are feeling better soon x

catmomof3 · 17/04/2024 12:42

@demivolte I think I'll probably get my oncologist appointment at this rate before my PET/CT, pretty sure on Friday they will actually discuss my treatment as they should have my MRI results back. It's just annoying how everything takes so long, having to wait 8 weeks for treatment is awful and to feel the cancer moving must of been gut wrenching. I have little niggles so trying to not think mine have left the pelvic lymph nodes yet. All of you are so strong.

I need to improve my diet for sure but very hard with sensory processing issues and start increasing my fluid uptake for the sake of my veins at the very least.

I know this will vary from hospitals but when you have chemo do you have a little table you can use? I was thinking of bringing small jigsaws or colouring books along with my cross stitch.

TwigTheWonderKid · 17/04/2024 12:47

The tables at my unit were tiny @catmomof3. Obviously every unit will be different but if yours is the same, what about getting one of those beanbag lap trays?

catmomof3 · 17/04/2024 13:22

@TwigTheWonderKid I have never heard of them before. I'll look them up thank you

Whatevershallidowithmylife · 17/04/2024 17:02

Arrived for CT scan, right let’s get a cannula in - me, no, I have a picc line that needs to be used, them - oh we don’t have anyone qualified to do this, me - well as per the leaflet I specified this at acceptance, them - can we just have a look at your veins, me - No, we will need to rearrange! They found someone. I am needle phobic (well hospital phobic tbh) and my veins were never good but now they just collapse at the same time as no black out. Finally managed to be at the don’t give a fuck stage and really am advocating for myself. Go me 😀

tothelefttotheleft · 17/04/2024 17:17

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 ?

Colonoscopy's aren't too bad. The prep ican be difficult. I have difficulty not regurgitating stuff like that so I asked for picolax as the volume is much less.

I had the procedure with sedation. I enjoyed watching/ seeing my insides on the monitor!!

I had 5 polyps and had to come back another time to have them removed as they didn't have time to do that on the day. That too was fine.

Lots of good threads about tips with the prep on Mumsnet.

MothralovesGojira · 17/04/2024 17:23

@Whatevershallidowithmylife
I had similar when I went to A&E with sepsis. The onco emergency ward was full so I was sent to main A&E. Hardly any of the nurses had seen a picc line let alone had training on one. I was in for over 10 hours and 7 of that was waiting for a picc trained nurse to take my bloods. One nurse tried to forcefully take my blood pressure on both my arm with lymph nodes removed and the one with the picc in and wouldn't have it that they'd have to do it on my thigh or calf. There were only a few nurses who'd even seen a picc so I had a procession of nurses come in to have a look and at one point gave a talk about piccs to several foreign nurses who stood around my bed having a closer look!

tothelefttotheleft · 17/04/2024 23:13

@MothralovesGojira

At pre chemo they always take my no on the lower part of my arm with the picc line in. Should they not be doing this?

MothralovesGojira · 18/04/2024 10:11

@tothelefttotheleft
I was told not to allow any blood pressure cuffs on my picc arm and to direct nurses or HCA's to my calf or thigh.
None of us with piccs had pre chemo blood pressure done.

MothralovesGojira · 18/04/2024 10:16

@tothelefttotheleft - sorry pressed too soon.
I presumed that it was because the BP cuff can push on the blood vessels causing the picc line to move or be compressed which would be bad I guess? I know that I always found pressure on my picc entry arm to be uncomfortable so I probably couldn't have tolerated BP on my picc arm anyway.

Whatevershallidowithmylife · 18/04/2024 13:16

@MothralovesGojira @tothelefttotheleft anything on my picc line arm is a no go area for me!

catmomof3 · 18/04/2024 16:22

My PET scan is booked for next Tuesday, they have allowed my mum to stay with me while they inject me and then she has to leave. Usually they don't allow anyone in with you so it's nice when accommodations are made. They said I would be there for 2 hours but the scan takes 30 minutes? What's the other 90 minutes for?

JlL2013 · 18/04/2024 16:54

@catmomof3 is it a scan for staging? Or for where the are going to target the radiation?

If it's the radiation one then they might make you fill your bladder and wait 30 mins. They might do your radiation tattoos (or they might use stickers) so they can line up the laser (not the technical explanation but along those lines) The tattoos (if it is that) are just three dots