Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Hope your hair loss calms down Great I did have about 3 days like that and thought it was game over but then it reduced to back to losing a few hairs a day and stayed that way. In my case I think the heavy loss was coming from what was not being directly touched by the cold but that was the underneath layer that went so it was still OK. I did get a bit missing at the front where fringe was so I moved fringe to side and cut a bit of other hair to cover it and was OK unless windy. I do remember those 3 days when it was blocking sinks, bed was covered but I must have had more hair than I realised. Not as much as Floof though, I felt like putting him on my head. Floof's tail alone would be enough.

I could not have done the starving diet but you seem to be doing really well on it Sierra and if something works I would keep doing it as long as you feel well enough too. I ate about 1600 calories a day and did not put on weight. I had to eat small and often, I think due to the steroids. I wish I had known straight away you did not have to take those.

I also read on hair loss with chemo brush as little as possible and gently and wash very gently and as little as possible so I was washing it twice a week and very gentle brushing until tangled. Not completely convinced but it did seem to work. Though was just at home most of time.

@ItsHitTheFanNow I don't think there is any need for specific hair care whilst having chemo/scalp cooling, apart from sticking to something relatively gentle and not overly fancy and to only wash infrequently, although comb out at least once a day to remove any shed hair which would otherwise matt. I don't think any brands claiming to help growth could be effective when up against the poison of chemo working from the inside so I wouldn't bother with those. Anything claiming to volumise probably coats the hair strands so would need washing out frequently thus I would avoid that too.

I used Moo Goo hair stuff when I had chemo as it was gentle & might even have come in the oncology pack they do. I had to give up the scalp cooling though as it became another hurty thing I could do without!

I had to eat small and often, I think due to the steroids. I wish I had known straight away you did not have to take those.

I had a friend who went through chemo a couple of years ago who said she didn't take them and she thought that gave her fewer side effects. I had an open mind but I do tend towards only taking things if I have to, but as I felt normal the next day I decided not to and to see what happened.

@HauntedDishcloth The Paxman website states that shampoo and conditioner should be color, perfume, paraben and sulfate free.

@HauntedDishcloth What's the oncology pack by the way? I haven't had one of those.

No oncology pack either! Someone said that if you go to the Look Good Feel Better workshops then to get a pack of stuff, but I'm struggling to find a hair one that doesn't clash with work.

I cold capped for 7 of my 8 chemo sessions, by the 8 th my hair was too thin and they wouldn’t do it as it would be too painful. I shaved it after that, not the shortest clip, but just really to get all the wee sad wispy bits off as that made it look really bad and sad. It’s growing in well and thick now 4 months on very very short, but thick which it never was before really. Interested to see what it does as it gets longer as it was quite wavy before. It’s coming in very grey though which has sort of changed my colouring if that makes sense as it used to be auburn so I wore a lot of green, but that seems to suit me less now! Might have to move to blues!
I ate what I fancied on chemo which to be honest was not a lot. I lost about a stone, which I have put back on and more since. I really could only eat fruit, my tastebuds were shot and I liked the tang of fresh fruits so ate the prepared bowl type things a lot and drank fruit juice mixed with fizzy water.
I probably could have fasted as no real appetite but I felt I needed vitamins. I wouldn’t say I craved the fruit but I tolerated it well and it definitely helped with the chemo constipation.

Oh and I also wash my hair with paraben etc free conditioner maybe once or twice a week, no hairdryer (doesn’t need it too short still) , the Faith in Nature stuff. I also use their everything free body wash since radiotherapy and have not had any skin issues so far.

I've always used paraben free, sulphate free etc having curly hair. Also body washes etc as better for us & the environment. Moo Goo do their own oncology pack but you can get free chemo/radiotherapy packs from a website called Little Lifts. I also got one from CancerHairCare but that may only have been as it was lockdown.

I shaved it off this morning. I didn’t brush it last night in an attempt to save it but by morninh all the shed had matted into the good hair. When I brushed it there was new big bald patches behind my fringe and on my crown.

I found a pair of big girl pants bigger than I’ve ever worn before and had my husband shave it to a number 2 all over. It looks DREADFUL. Patchy and spiky and rubbish. But, I feel SO much better. Like the dread is gone because it’s done now, and I don’t need to think about it any more. It’s still coming out in handfuls so I imagine all my spikes will be gone in the next week. Fuck it. I don’t care, if this is what it takes to give myself the best chance then I’ll dive in.

Ah, sorry the cold cap hasn't worked well Great but well done for actually doing the shave. Hopefully it's giving you some mental peace. Still don't know where mine will end up, it's not shedding quickly yet but I suspect there's quite a bit more to come.

Sorry your hair didn't survive Great but well done on braving the shave and you are right kicking the cancer out is definitely the priority.

Chicagocubs sister Kathy has now come on the GCSE thread to give news on her nephew and he got amazing results and has been with her all summer with his Dad.

Taken two hormone tablets now and yesterday took with food at evening meal and no sickness so that's an improvement.

@balkanscot I saw this article about a man with stage 4 brain tumour and this is probably a million to one shot but I saw it said he was getting a special treatment in cegat in Germany. www.cambridge-news.co.uk/news/local-news/cambridgeshire-man-diagnosed-incurable-brain-24862229 I have no knowledge of brain tumours so maybe a different type but just thought would mention it just incase it would offer any hope for him. The GoFundMe has more links to research.

Could I ask how the chemo has been for everyone? I'm starting to get very nervous about it. Thanks

@ItsHitTheFanNow What chemo are you having?

I remember being so nervous before chemo, I think it was the fear of the unknown. I see you're having EC then Paclitaxel. The EC was worse but nowhere as bad as I expected, I took all the anti sickness meds so was never sick. I did feel a bit queasy one day (it was also hot). It made me very tired though. I did get constipation from the anti sickness meds the first round which wasn't fun at all. I took Senokot after that which helped so do anything to avoid that!
Paclitaxel was nowhere near as bad and I didn't need any anti sickness drugs. I did have slightly itchy/dry skin after the first 2 or 3 rounds, but my main side effect was aches which started 2 or 3 days after the chemo for a day or two.
The nurses in the chemo unit were lovely which made the whole experience a lot easier.
I hope it goes smoothly for you.

I’m on paclitaxel/carbo and similar to Vino my main symptoms were really horrible aches all over on days 2-4, constipation, and an itchy all over rash like heat rash. I was very very easily tired between day 2-4 as well but then back to normal pretty much bar the rash, bowel issues and tingling in my feet. I have only had 1 round though, my second is this week. If you want a chemo buddy feel free to PM me.

@MrsPnut I'm having four rounds of three-weekly EC and then weekly Paclitaxol for the next three months. Also having injections of Phesgo in conjunction with the chemo.

Thank you @Vinorosso74 and @AGreatUsername.

@ItsHitTheFanNow I've had one session of paclitaxel (3 hours) and carboplatin (1 hour) and I was apprehensive too. Second one tomorrow. I have done lots of things to ameliorate the effects and I seemed to get off quite lightly, just nausea on the first night and then slightly a few days after, it didn't affect my eating though. Perhaps been slightly constipated too but not badly. I didn't take extra steroids and antiemetics as I thought they may cause more side effects and I didn't need them. I've worked (mainly from home but one meeting) and exercised throughout. On the day it seemed well-regimented and I wasn't bored, though I did sit next to someone nice to chat to for some of it. Having the cannula in my hand meant it was difficult to do much though, and the cold cap strap under my chin was more of a nuisance than the cold on my head! I do expect to feel worse as the sessions go on, though I have a couple of friends who also thought they weren't badly affected either.

That's encouraging. Thanks @SierraSapphire.

Just thought I'd share this product that I've seen recommended on the Paxman Facebook group:

ParaFaciem Reusable V Line Mask Facial Slimming Strap Double Chin Reducer Chin Up Mask Face Lifting Belt V Shaped Slimming Face Mask amzn.eu/3LiQQwx.

Lots of people seem to use exercise straps or scarves to pull the cap down tighter but I thought this looked like it might be more comfortable and hopefully do a better job.

You can put it on in between the inner and outer cap to keep a tighter fit.

It's probably all going to fall out anyway but going to give it my best shot in the meantime!

Scalp advice…..

What can I put on my scalp to soothe it? I shaved my head, but the hairs are still falling out at high speed and the areas where most hair is shedding are very tender and sore. I left it at about a number 3 and have ordered a lint roller to remove most of the loose hair but my poor scalp is so sore and itchy 🥺

@AGreatUsername I hope you don't mind me answering, I've been lurking for a long time, but have never posted. I had a similar thing happen after my first chemo, and I cut my hair shorter and shorter, but it was still falling out. In the end DH shaved it all off through wet shaving, and kept shaving through my treatment - rather annoyingly there were still odd patches of hair which would grow. It felt so much better after that, and my scalp felt less irritated. I used Aveeno cream on my scalp when it felt sore.

I spoke to a few women at the chemo unit about the cold cap, and nearly all of them said they had lost their hair, or that they had patchy hair, so I decided against it (and I hate being cold!)