Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Hey everyone. So 2 weeks post first chemo today and my hair has started thinning out quite rapidly. My scalp is sore - just started today - is this coincidence or normal when hair starts falling out. To shave it or not to shave it? I am naturally curly so always have to straighten my hair but I think the pulling of the straighteners would just pull it out. Thoughts anyone???

Are you cold capping @Timeforchangeithink? My scalp wasn’t sore but I’ve heard loads of women say theirs was, it seems pretty common. It can get distressing when your hair starts falling out in clumps, which is why lots of women cut their hair. If you cold cap though the priority is keeping what you have in good condition, as the falling hair can get matted with the still in hair. Either cutting it or not cutting it is pretty crap though, so it depends what type of crap you want!

If your aren't cold capping your hair will all come out and itching is part of that, I didn't have itching but did similar to cold cap. A lot of women do get hair cut off when it starts itching to stop itching and to stop hair going everywhere if not cold capping. If cold capping I would stick with it. If not up to you, I would prepare what you plan to next like wig, hat or stay bald and then cut it out but its whatever you feel is least worst.

Hi not cold capping - wasn't offered to be fair?!? It isn't itchy just feels a bit sore? I've got my wig already and my eyebrows - I like to be organised! I don't fancy it coming out in clumps and I think that might be next. Hmmmm.....

I think @Timeforchangeithinkthat women have said that the weight of the hair is partially responsible for white sauce, so cutting it shorter helps with this.

White sauce 😂 - that was what dictation thought I said when I said why it’s sore! Sometimes it seems more trouble correcting dictated mistakes than just typing it in the first place!

@mowly77

I'm so sorry to hear that. Virtual hugs.

🤣🤣🤣 x

@mowly77 so very sorry to see your update that you’re feeling so poorly and I’m also sorry about your cat. Lots of love sent your way 💐

So sorry to hear your update @mowly77, sending you virtual hugs. Cancer is such a bitch, I hate it.

@Fairywren7, I was fortunate not to have any lymph nodes so nothing had to be removed.

@scandimandy, I was only supposed to stay in hospital for one night but ended up three nights due to my drains not working properly, on getting home, I could move my arms but struggled with things like lifting myself off the bed, as you will need arm strenght, wearing tops, even if they are buttoned down ones. As for making a drink, I didn't have to do that till the 2nd week as dp made my meals but it was fine as I only had to fill the kettle for one person etc. I think it depends on how frail or unfit one is before the op, I was quite fit until the diagnosis which was when anxiety set in. If you have support the first few days after the op, things should be a bit easy.

I also need to add that you may not be able to lift your arms above your head for a few weeks or carrying anything heavy. I had to stop doing Kettlebells after the op, almost a year on and I haven't returned to it. Now I am fat, story for another day 😊

On Hair: ( without white sauce!) When it fell out two weeks after EC dose 1 it was sore, like too tight plaits, and shaving it off helped a lot with that.
When it grew back this time I had odd thin circular areas on top initially but they have thickened up nicely four months on. I quite like it at the moment and have bought a lovely fedora hat to wear to a vintage party next week.

I ran amok in Fat Face in Ashbourne earlier and the shop ladies got involved and brought me lots of new stuff to try on. I may have spent rather a lot of money but DH was spending more on yet another bicycle 😂 We had a lovely trip to the Midlands and came home avoiding motorways so I saw places like Lichfield and Stow in the Wold that I have never been to before. What a beautiful country we live in!
I am nearly five weeks into the oral chemo and although I am tired and hideously unfit I am having fun again thank heavens. I think as long as I don’t push too hard I can cope with Cape.
Love to all x Top

Glad for the hair chat on this thread at at the moment. I’m just sat in bed googling hair re growth vitamins and products. Anyone tried regaine? Or any other recommendations? I had such lovely hair before all of this. It was long length and thick. The cold cap didn’t work for me and now I’m as bald as a coot! (Strange expression!)

@TopOfTheCliff we’re currently in Oz but I come from Kent, UK originally. Came back last year for a long visit to see family and friends. Was already thinking I wanted to come back but the cancer diagnosis has galvanised this. Spoke to my husband yesterday and he understands and will consider moving when treatment completed. My parents are late 70s and it’s time. Been out of the UK for 15 years and lived in lots of different places. Bit concerned about the UK economy but it’s crap everywhere and I’d rather be near my family!

@Makemineadecafplease thanks decaf - good to know a bit about what happens after the surgery. The nurse was saying maybe 5 nights in hospital. But I like to get home asap.

@mowly77 sorry you are feeling so unwell. We all get it.

@mowly77 oooohh I've been there - the end cycle for about half a year I thought I had covid and tested appropriately. Was never covid or a cold, was always low neutrophils. Like you I got fed up with feeling ill all the time and they kicked me down to 75 which made a big difference i fatigue ad illness, for about a month until I was taken off palbo completely for something else due to progression. What is your onc saying about this situation? There are adjustments that can be made, there isn't a reason to leave you in this state, though lord knows the NHS seems to forget about you if you are 'stable'.

@TopOfTheCliff I am moving on to cape end of the month, so I have a few weeks to get supplies in for the hand and foot situation. Did they advise (or have you found) certain creams?

@FairyWren7 On hair, here is mine pretty much 6 months to the day after last chemo. It is a hideous, unruly curly mess (dead straight before) but it is just as thick as before. I haven’t used any supplements for it other than my standard multi vitamins.

Mowly, sending you love.

Hi everyone, I thought I would post here for some support and solidarity and also to offer my own. I have a thread in life limiting illness that I’ve received a lot of very kind replies to. I’m trying to keep that updated as a sort of a diary.

I am 45 and have liver cancer, initially it was thought to be pancreatic, but it is liver with spread to lymph nodes. One large tumour and numerous small. I am waiting for an urgent MRI and PET, I think the PET scan is to see if there is another primary as primary liver is unusual as I don’t have any predisposing factors. Haven’t been right for over a year, was told gastritis for ages and fobbed off, then I thought it might be gallstones, but it’s all academic now.
Not feeling so great, lots of pain and losing weight (the shock and anxiety won’t be helping with that). Down to 7 stone 10 which is really bad. Usually 8.5 stone. Extremely scared. Surgery doesn’t seem an option for me because of spread. Chemo may be, and I just want to get it started as the wait is torture, every day I feel is missed time.
Keep looking into alternative therapies too, but my mind is totally bamboozled with everything and I don’t feel I have the capacity to put together some alternative regime at present, it’s just all too much.

Thinking of you all and taking each day at a time.

Hello! Is there room for another one 🙂

Welcome Wilson and LucysMam We always have room here, would be good if no room was needed as nobody got cancer though.

That sounds tough going Wilson I never really bothered with alternatives as didn't seem evidence they worked. Only thing I did find evidence for was exercise 3 to 5 hours a week reducing reoccuance 50% so I try for that but did not manage it in chemo etc year but close now.

I used to sometimes go on your other threads LucysMam I did wonder about you when you were ill for so long. What have you been diagnosed with?

My hair is very similar to yours Great

I have breast cancer on both sides @Silkierabbit. It was all a bit of a whirlwind tbh & I started on plicataxel (sp) for 18 weeks, last weekend. The plan atm is another ct scan after those 18 weeks to see where we're at (and, in my head, to go back to work but we'll see).

I'm quite dreading the hair loss. My hair was ready for a cut & colour when I got ill so has gone to shit a bit but I'm still worrying about that. I've bought a couple of pretty headscarves for the moment & may enquire about wigs...I just have visions of those falling off 🙈 (I am quite vain tbh 😳)

Welcome @lucysmam and @WilsonMilson - as Silkie says, we are always happy to shuffle up and make room for more.

Wilson - that sounds really, really tough, and it must be torture waiting to start treatment and worrying about what's going on while you wait. Are there potential immunotherapy options? I ask only because a friend of a friend has liver cancer, first diagnosed in her 30s. She had immunotherapy as her first line of treatment. I think it might have been a clinical trial at the time. Anyway - that was over 10 years ago and her prognosis at the time was extremely poor. She is still here and stable. I'm sorry if that's not helpful - I realise I don't know the details of her cancer or yours (and it pisses me off no end when people do the same to me).

@TopOfTheCliff - I'm so pleased you enjoyed your trip. I have family in Lichfield, and go there quite a lot. It's such a pleasant, walkable small city.

@AGreatUsername I think it looks great! I’m feeling quite envious but also hopeful that I might get some of mine back in a few months. Seem to be developing peachy fuzz at the moment. It feels so weird and I don’t have the right sort of head for bald. I feel like the bride of Frankenstein!

@lucysmam waves - I also have bilateral, as if one wasn’t enough.

Welcome to @WilsonMilson I hope you get some answers soon.

@WilsonMilson I’ve taken an integrative approach, so some traditional treatment but supplemented with other things. I’m happy to give you some pointers if you want to DM me as to how to find reliable information.

@lucysmam I wore a wig but with a wide headband over it so it felt much more secure. There was once I got it caught in a tree branch and was scared the whole lot was going to pull off, but it never actually happened! People who knew that I was having treatment but didn’t see me every day said they couldn’t really tell whether it was a wig or my hair as it was so similar to my old style.

@lucysmam welcome. I have bilateral BC but mine were two years apart and opposite types. Metachronous instead of synchronous I think. I will catch up on your thread.

I have brought some Mane and Tail shampoo as it made me laugh but I don’t think much makes a difference to how it grows back. @AGreatUsername your hair looks fab! I hope mine is as healthy in a month!

@HerbalRefreshment I was given Aveeno by the nurse who had run out of Udderly Smooth (which I bought online.) My sister in law gives me Nivea Hand cream in huge quantities which seems to help. I have realised that swimming or showering washes off the cream so I am avoiding that until I smell bad. So far my feet are a bit numb and tingly but not dry. My fingertips have peeled. Today I am exhausted and a bit low but have nothing to do but eat and chat today.

Thanks everyone, and @SierraSapphire i’ll dm you if you don’t mind as I would like to try anything in the meantime. @dotty2 that’s incredibly encouraging about immunotherapy - the hopeful stories are what I’m holding on to as there seem to be precious few for my situation. I have no idea of my treatment options at this point, but I have been reading about immunotherapy and would be first in line if it’s at all available, and would probably go anywhere in the world to get it if I could afford to.

My MRI picked up scarring on both kidneys. It said 'minor' but I think it's important to work out why and if it's going to worsen.

Anyone got any knowledge on this or anything?

Hospital isn't doing anything because the scan was to check the pancreas. Repeat scan in a year.

i'm on high dose BP meds as well as having been on various chemos and now phesgo. They check my bloods every 3 weeks incl kidney blood tests which seem ok (my lymphocytes are always very low).

My cancer is breast and lymph HER2+++ gr3 st3

Thanks