Sept 2025 chemo starters

[poptart]

Hello September ladies, I’ve just joined the October thread as my chemo starts next week (31st).

I’ve been reading through all your posts and finding all the tips really useful, so thank you. It’s helpful to hear about your experiences seeing as you have been at this for a good few weeks now and are somewhat ’experts’ compared to me.

I am absolutely petrified of chemo (4xEC and 4xPaclitael every two weeks). I’m just hoping the reality might not be as bad as all the horrible thoughts in my head.

I do have a question about washing hair. I’m planning to cold cap (if I can tolerate it) and have been told they will wet my hair and cover it with conditioner. What should I do when I get home? Should I wash the conditioner out or just leave it to dry? Also, I’ve been told I should only wash my hair once a week with shampoo. When do you typically wash yours in relation to the chemo day?

I’m sorry if this sounds like a daft question. It’s all the little things that become overwhelming as well as the big things.

[buggeringon]

Hi @poptart,

I have a nice shower when I get back from chemo with cold cap and get into nice clean Jim jams. I have eczema normally, so I don’t have the water super hot anyway, but haven’t turned temp down any further.

I’m now 4/12 paclitaxel and 2/18 herceptin in and hair has only thinned slightly so far.

And no such thing as a daft question! Xx

[buggeringon]

Re being overwhelmed- that’s totally natural. This is a scary journey. We all found the anticipation the worst. As soon as you’ve got that first treatment under your belt, you are sure to feel a lot better xx

[story1]

Welcome! What @buggeringon said, ask anything and the build up is absolute worst anxiety inducing for sure. I’m cold capping (week 7) I take a woolly hat to put on after then rinse the conditioner when I get home and get comfy, my hair feels so silky, I haven’t lost any yet. You might get to 10 mins in cap and think you can’t stand it but another 5 mins and it goes numb. I wash it about once or twice a week. I’m doing Carboplatin paclitaxel and Keytruda first for 12 weeks, I’ve been told that I might lose it when I switch to EC for 12 weeks. I don’t know if you use reading glasses but I couldn’t fit mine under cap so I bought armless ones from Amazon and they’re ace xxx Rachel

[story1]

[poptart]

Thank you, and great tip about the glasses - I’m off to order some now

[poptart]

I hope so. Thank you x

[cathie2]

Welcome @poptart totally agree with what others have said, the waiting is the worst but if you are like me once I had the first one done I felt so much better. The relief felt soo good to get it done with. Good luck for this week Exactly how @story1 says regarding the cold cap. Keep with it after 10/15 mins and it will be much better.
I have been thinking of getting the armless glasses, its good to know they work.
The forum is great as we are all at slightly different stages and the tips are super helpful.

Have been listening to music or podcasts with the cold cap but I need my sons big headphones that go over your head as airpods do not fit.

I am heading for number 5 tomorrow. I had some hair shedding this week for the first time. Am hoping it is just the thinning that they say can happen.

I have been washing my hair twice a week and switched to moo goo shampoo and conditioner and it does seem nice. I may drop to once a week wash.

@emds 25 how are you. Hope you have had a good week. Good luck for tomorrow and to everyone for their treatments this week.

[poptart]

Thank you, everyone is so kind and hearing your positive stories really helps

[poptart]

Another question - has anyone got a Portacath fitted?
I had mine fitted last Monday and over the last few days I’ve had really bad neck and shoulder pain. I am pretty certain it’s muscular due to having to lie still with my neck turned for nearly an hour during the procedure. I suffer with back and neck problems anyway so I think this probably wasn’t the best choice for me… but too late now!
The area of the actual port doesn’t hurt and it’s not red or swollen so I’m not concerned about infection.
Just wondered if anyone has had this and how long it took to stop hurting?
I have to go back to the hospital tomorrow anyway to have the dressing removed so I will ask them for advice.

[anim4l]

Welcome @poptart .
I have a PICC line not a port.
I’ve done 3 cycles of fortnightly EC , one more to go then 12x weekly paclitacel.
I’m cold calling and was advised not to wash my hair until the following day. Not sure if that’s overkill. I use a leave in hate mask and wet it at home just before chemo and stick a shower cap on to go to chemo (I’m only 10 minutes from the hospital and it was really messy wetting my hair in the chemo ward bathroom).

I wash my hair daily. I imagine it’s not sensible but I don’t understand how washing your hair harms it or makes it fall out / the follicle is either attached or not? I’ve lost 50% of my hair by now - hope it’s stopped now but I have a bald patch on my crown , from the front it looks normal so I’m going to wear a hat this winter and try to not brave the shaved head as my 10 year old daughter doesn’t like change .

[anim4l]

@poptart , I bought this hoodie for £20 from Asda for my chemo - keeps me warm, not sure if you need special clothes for your port

https://direct.asda.com/george/women/sweatshirts-hoodies/adaptive-clothing-black-hoodie/G008249633,default,pd.html?redirectFromInt=1&cmpid=ppc-_-geor-_--_--_--_-dskwid-_dm&utm_campaign=pla%3A_Fashion_-_Womens_BAU_-_Performance_Max&utm_source=google&utm_medium=cpc&gclsrc=aw.ds&gad_source=1&gad_campaignid=18393605713&gbraid=0AAAAADt8WclFzaWl0azNbR3LiDhRxpJ5v&shareProduct=true

[buggeringon]

Weekly update number 4:

I’m on weekly paclitaxel and herceptin every 3 weeks. This Tuesday was treatment 4, so second double whammy of taxel and herceptin.

I had been expecting to feel worse again, because of the double treatment- but, to be fair it wasn’t too bad. No energy for a few days, some aches and pains, tummy best week yet. This fit nicely with my anti neuropathy strategy of resting for first three days, then be active for 3.

Have not been as woozy/dizzy with light exercise- still getting it a bit, but have been able to do more.

I have really upped the drinking water and think it’s made a huge positive difference.

Neuropathy is less than it has been - still having some marmite and extra eggs, but less than previously. Waiting for vit d prescription as it been bounced back to gp who is liaising with the hospital pharmacy for safe dosage, as test shows me as very low. (Am using suzzipads and compression socks).

Liver enzymes up a bit this week, so some minor diet tweaks, as anaemic too (am now getting my blood results printed out every week - got oncologist to add it to my care plan. ).

After every treatment, on day 4 I seem to get a bit weepy!

Still no vaccines booked despite chasing all angles. Think I might call PALS this week, it seems ridiculous to me that pre treatment vaccinations is not standard protocol.

Positives:
Mostly better in terms of side effects.
Our lovely neighbours made us an afternoon tea as a surprise today - with detailed ingredient list, bless them
Have reached the 1/3 stage!
Hair mostly in place!

Hope above helps others on same regime.

Sending love to all of you magnificent peeps xx

[buggeringon]

I wonder if the mechanical action of daily washing is adding to the hair loss?

The cold capping will still be worth it though for the recovery of hair benefits.

Keeping my fingers crossed for you that you keep what’s left of your hair xx

[emsd2025]

Hi @cathie2 and everyone, number 5 tomorrow! I’ve been ok this week though can’t shift my nasty cough. Be glad to get tomorrow over so we can look forward to the wedding!

[poptart]

Your hair looks in great shape after 3 EC sessions. I’d be very happy if mine looked like that. Like you say, it’s easy to wear a hat at this time of year and no one will bat an eyelid. Talking of which, how are your eyebrows and eyelashes holding up? They look great in the photo but I can’t tell if they’re microbladed or drawn on or real!

[poptart]

Yes, I have got a jumper from ASDA’s adaptive clothing range - it’s fab as it unzips at the shoulder for easy port access.

[anim4l]

@buggeringon - I’ll be saving your insights for when I start paclitecel and resting as that wasn’t my plan as I’m having chemo on Friday and wanting to do things with my daughter over the weekend and rest in the week - which has worked with EC chemo in a Friday as I have steroids on Friday, Saturday and Sunday - which keep me energetic.

I think I’ll decrease the amount of hair washing and wear a cap a bit more to try and protect my hair - it doesn’t come easily as I’ve been a daily hair washer since my teens …

[anim4l]

@poptart - I had my eyebrows micro bladed before starting chemo as I’m expecting to lose them by the end of my chemo - they do look fairly at the moment as I have naturally black eyebrows- but when the hairs fall out I’m hoping you’ll see the micro blading beneath as looking like my natural brows. I’ve had lots of compliments from friends on my brows and my sister and another friend have gone to the same brow lady so it’s clearly noticeable and not particularly natural, although I kid myself. They were quite dark and heavy the first week after having them done - and contrary to what you are told - it is uncomfortable - not agony (I’ve never had any other tattoos) but it hurts while it’s being done - not after.
I was advised to get it done asap so it could heal before starting chemo as you want to reduce infection risk. I went a fortnight before starting .

[anim4l]

@buggeringon - I also find it ridiculous that vaccines are not standard before starting chemo. I paid to have Covid done 2 weeks before starting chemo as I’ve had bad Covid before and wasn’t prepared to take the risk. I’ve had flu as well. I have been advised that my 10 year old daughter must not get the nasal flu vaccine this year because it contains a live virus that will put me as immunocompromised at risk.

I’m glad the neuropathy isn’t too bad this time.

I have had long standing issues with vitamin D levels - which caused issues in knee ligament reconstruction 15 years ago, after a knee ligament injury last year which I was considering surgery for I had my vitamin d levels tested privately, my (private) orthopaedic surgeon would not prescribe vitamin d but I used this to get my levels from too low to operate to a healthy level in 12 weeks . My oncologist is happy for me to continue to take it during chemo but won’t approve anything else which is frustrating when so many women develop anaemia during chemo.

The hospital refuse to print out my blood results saying I need to put in a freedom of information request!! Which takes a month so not helpful…they will write them out for me though which doesn’t seem the best use of the nurses time but I want to see that info so I can track . I’m also having extra eggs and marmite , and eating organic to reduce the load on my liver - previously I only stuck to organic for a few items so it’s expensive!

Zipvit Vitamin D3 4000 IU, 360… Zipvit Vitamin D3 4000 IU, 360 Maximum Strength Vitamin D Tablets, 12 Months Supply, Vegetarian, 1 a Day, VIT D3 As Cholecalciferol, Supports Bones Muscles, Immune System : Amazon.co.uk: Health & Personal Care