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.

That sounds wonderful Mowly Hope you had a cocktail.

Glad you are out and about Top

So sorry Balkan it must be so difficult but I am sure your DH loves you very much, just the awful cancer and meds talking but last thing you need.

Great I also started losing hair a lot, maybe a bit later about day 19 or 20 for me, and luckily I was staying overnight in B&Bs so took mind of it but I did find after that it stabilised. I did cut hair to a bob at that point at DHs suggestion and would say after the 12 weeks I had 50% of that left. I had to come off the sites were everyone pushes everyone to take control and bold is beautiful. There is nothing attractive about what chemo does to hair, well its a rare case, and its only taking control if that's what you want. Mine never hurt though and stayed at 50%, I did wash it as little as possible and not brush it if possible but depends what you are doing. Its just finding what is best, or least worst for you, but your hair can go like that around then and have 50% left at the end. It also meant mine has grown back as before and 2 months to the day I finished its grown about an inch longer and looks thicker. Not really sure how it could be thicker but looks it and it will be much quicker to get my hair back than if I had shaved it all off. Of course I hate it if wind belows as underneath there are patches and patches did go white. But there's no way you would know I had chemo now, well maybe eye brows as they are 2/3rds back and uneven. Boob chopped off gives the cancer away though but think by Christmas my hair will be a lot closer to what it was before. And even now without wind blowing it looks like I just got hair cut shorter.

Started the Tamoxifen tonight, I already want a divorce and its 9.9999 years to go. No issues from radio though. Well do have a numb arm but had that before radio.

I did wonder about Chicagocubs I am sure her son did her proud, did send a PM to say thinking of them but not heard back but of course her sister may not have access or be able to work MN. Mine is on to 4 A levels next and hoping to do Medicine at university, she has banned me from telling MN her results, she is probably right.

Hi, please would anyone be able to recommend a shampoo and conditioner that can be used during EC chemo and in conjunction with Paxman scalp cooling? Many thanks in advance and very sorry we are all here.

I'm using Faith in Nature unfragranced etc. I know other women have said Aveeno cider vinegar @ItsHitTheFanNow - I've got second treatment of paclitaxel and carboplatin this week and used the Paxman. I'm on day 19 and have a bit of shedding but manageable.

I also got some Moo Goo leave in conditioner, a recommendation from the FB Paxman group, but I haven't tried it yet.

I have finally had a result re my meds and scan. Not before chasing it around the houses. I still havent actually seen the scan Ive paid for but its been agreed I can restart Niraparib ! Big round of applause for the Macmillan Clinical Nurses who have followed up every phone call of mine (I apologised for being a pest!) and got an answer for me. SO hopefully Ill restart next week. Huge sign of relief in my house.

@thereisonlyoneofme so pleased you can restart Niraparib, what a relief for you.

Thank you @SierraSapphire.

My shedding is now insane. More like loss than shedding. I’ve lost about 50% of my hair now it is so thin and handfuls come out if I touch it. I am actually leaning towards taking control and shaving it this weekend. The loss has been SO dramatic in the 3 days since it really started that I know it cannot be sustained. The cold cap clearly hasn’t worked for me. I’m already sick and tired of hair being EVERYWHERE, all over me, my clothes, my furniture, my husbands beard etc.It’s terribly depressing.

I’m giving it until tomorrow and if it hasn’t stopped I’ll shave it. My parting is noticeably wide and Im so self conscious.

@ItsHitTheFanNow I have heard great thing about Aveeno shampoo. I am using the oatmeal version.

That does sound a lot Great if cold capping. I wonder if has not been fitted tight enough though I think it works for something like 70% of people. I thought back to when quite a bit of mine came out and it was actually when I was on a break in Wales due to neuropathy and away so after 4 weeks of treatment so around day 29 or so for a few days and I lost very little up until then. Then a few days of a lot, cut to bob length, then very little lost after that. It never got below 50% and it was the top 50%, I did have to get rid of my fringe and just move to the side. I can understand you shaving it if its gone beyond that, sorry that has happened.

I’m wondering the same thing @Silkierabbit , I had the cap with no problems and it didn’t even feel more than cool so maybe it was actually not tight enough despite the reasonably snug fit. This is just the loss from this mornings brush, not even counting the extra lost while I washed it in the shower. This has been the same amount twice a day today and yesterday. It’s just so much that it’s visibly thinned since last night. I can’t see it stopping before I’ve lost an infeasible amount.

Thank you @AGreatUsername. I have ordered Aveeno ACV as keep seeing it recommended.

Do you mind me asking what chemo you're on? I'll be starting off with epirubicin and cyclophosphamide, which apparently is particularly bad for hair loss. :(

I’m on paclitaxel and carbo, it’s the paclitaxel that causes complete hair loss for me. I used the cold cap but either it hasn’t really worked or maybe wasn’t tight enough to work fully.

Oh no. I'll be moving on to weekly paclitaxol after the EC and have been told the EC is much worse for hair loss!

ItsHitTheFanNow - cold capping is supposed to be pretty successful for the shorter paclitaxel infusions, less so for the three-hour three-weekly ones, though I am on the latter and my shedding hasn't been too bad so far, though it could still be all to come!

I’m so pleased for you. Well done to you and the nurses for getting the answers you needed.

I think paclitaxel is a taxane and epiribucin is an anthracycline, so definitely a lot less effective for the epiribucin according to the Paxman website.

This is it for me ItsHitTheFanNow - so not in the highest percentages but definitely worth a go, and I understand you get quicker regrowth even if you lose it. I am also fasting to minimise side effects, so I wonder whether that might also help to shut down my hair follicles, as that's the intention for other healthy cells.

I've not been on here in ages. Finished my active treatment for grade2 ER+and PR+ breast cancer back in February.
Sorry to see new names, returnees and Top sorry to see your recent news. I saw a car with a sticker on yesterday saying "fuck cancer". Very apt.
I feel at least 20 years older than I am. I'm on 12 weekly Prostap (switched from Zoladex). My oncologist has checked my hormones are suppressed enough and will again before my next one. Annoyingly, I have to chase up blood test. appointment. Also, on Letrozole and have been for 9 months now.
For those asking about cold cap and hair loss. I used it and shed loads of hair between my 2nd and 3rd EC chemo (I had 4 rounds every 2 weeks). I was going to give up but the chemo nurses convinced me to stick with it and the loss did slow. I did lose over half my hair. It did start growing back on the weekly Paclitaxel. I didn't use any special shampoo but only washed it twice a week, no hairdryer. I finished chemo mid October 2021 and had my first haircut mid May (it was 4 styles in one including weird chemo curls at the back). It's growing pretty well and thickening out despite currently being an awkward length. If you can tolerate the coldness, do stick with it.

I haven't heard about fasting before @SierraSapphire. How do you do it exactly? My oncologist actually told me to eat whatever I wanted and just go with any cravings I get.

Good to know you felt it was worth it @Vinorosso74. Definitely going to give it a go.

@ItsHitTheFanNow there's a bit about it a little way down this article - www.theguardian.com/society/2016/jun/03/how-to-get-through-chemotherapy-decca-aitkenhead-cancer-treatment - and here is more detailed stuff from the doctor researching it www.valterlongo.com/a-better-quality-of-life-and-less-fatigue-new-evidence-of-the-benefits-of-fasting-during-chemotherapy/

The idea is that it protects healthy cells because your body has shut them down because it's not being fed, whilst making cancer cells more hungry and more active. I fasted for two days before my chemo, the day of it and then 24 hours after, so nearly 4 days. I have fasted before though, and I think my body is keto adapted, I low carb before I start to prepare myself for burning fat before I stop eating. I didn't find it difficult physically at all, I didn't feel any different from usual, but psychologically because you structure your day with food, or at least I do it was quite difficult at times. I drink water and green tea and occasionally black coffee as a treat!

I don't really know what I would've been like without doing this but I basically had no real side-effects, I had some nausea on the first night but I didn't take any of the steroids or antiemetics and I was absolutely fine, I carried on life as normal, working and exercising. Obviously things may be different as the treatment goes on, I've got my next one on Wednesday so I've stopped eating now and I'll see what happens after that! I lost a bit of weight but I put all of it back on after a week.

@SierraSapphire wow, very interesting. I don't think I'll be able to fast for four days though unfortunately! Well done for managing to do it.

@SierraSapphire I didn’t fast and I had no real side effects from FEC chemo, I had bone pain from docetaxol but that was helped once my dose was reduced.

I think if fasting really helped then it would have had a proper study b6 now.

There is plenty of academic interest in it MrsPnut as promising, and trials underway. Difficult to fund though I'd imagine. I've done a lot of reading of academic and grey literature and feel satisfied that there's a good chance it makes a difference. scholar.google.com/scholar?hl=en&as_sdt=0%2C5&q=fasting+chemotherapy+clinical+trial&oq=fasting+chemo

I couldn’t cope with the fasting. I’ve also seen things on it that look promising, but personally it seems like a way to make it even more unpleasant therefore I didn’t do it. Everything seems like such a rubbish choice with this disease. I don’t want to give up food, my one vice, as well!

Ivealso heard the cold cap works better for weekly taxol than 3 weekly so definitely give it a go! I had a variety of side effects from the first TC but all of them mild enough to not really be an issue (except constipation which requires some medication this round I think !)

I haven’t shaved my head today. We’ll see what tomorrow brings.