Hi everyone
I know lots of you are trying cold capping this month and just wanted to share my experience with you.
I have really struggled through my June diagnosis(ER+, PR+, HER-), August surgery(mastectomy and lymph node clearance) with the thought of losing my hair.
The cold capping seemed to work for a while but by week 3 of my first chemo cycle I was losing huge handful size clumps in the shower and on combing my hair with a wide toothed comb. It was just awful. So I ordered some nice head covers from Annabandana. On Saturday I went for my long dreaded hairdresser appointment and I can honestly say it was the best thing Iāve done!! Finally, after all these weeks of treatment something was in my control and I felt empowered!
Of course, I hope you are lucky, your hair may behave itself and cold capping be successful for you but if not be brave, take my advice youāve got this!
Jumping over from the august thread, as thought it might be useful to share my experience of cold capping on EC. Hope noone minds!
Iāve done 4 cycles with cold cap and yes to answer peopleās questions, you will still lose hair, but Iāve kept enough to be able to pull my shoulder length hair back in a pony tail and with a bit of creativity with root spray filling in any gaps Iāve been told Iāve got good coverage.
Iām a week out from my last session which I do have to say the cold cap made me feel quite nauseous for the first time, I assume due to lack of coverage in places but got through it and hopefully will do itās job in promoting regrowth. I am bracing myself for an end of chemo shed though!
you look great pink66 remember all of you if you want to book your look good feel better session through your Macmillanās at your trusts free goody bag and afternoon of tips and tricks from professional makeup artists Shi xx
Ahh you look fabulous! I think I may also be braving the shave soon as I would rather do that than have patches. I was also diagnosed 18th June with the same type as you. I had lumpectomy to remove 25mm tumour & had bi lateral breast reduction so that both my boobs would be the same size & shape still. What date did your chemo start? My 1st session was the 24th oct. Are you having the same treatment plan as me? Iām having 3 EC followed by 3 Docetaxel all 3 weeks apart. I will then have radiotherapy & then go onto tamoxifen. Did you need chemo due to your oncotype score? My oncotype score was 25 but Iām only 43 so that made the decision that I would benefit from chemo x
Thank you shelbylou!
We can be treatment buddies here as weāre on an almost identical pathway.
I had my 1st chemo on 10th Oct and will have exactly the same amount and type as you. Iāll then have radiotherapy to my chest wall-due to 1 rogue lymph node- donāt know how much yet as I see a different oncologist about that later. Iām 58 and my oncotype score was 21.
Hope youāre doing ok today.
I had two cycles with cold capping - last one 6 days ago and hair is shedding but only gradually and lots left for now.
Will stick with it for time being.
First week post-cycle 2 - TC has been rough with side effects, nausea, insomnia, asthma worse, extremely tired and bad bone aches. But glad to be With my boys at home and not in the hospital as last time.
Fatigue definitely worsened compared to the first cycle, and finding it emotionally challenging to think 4 more to go. But hanging on in. Wishing everyone an as good week as possible Love, Rose
Checking in for the October starters (apologies if this should go in November, am a newbie to this site).
I was diagnosed with ec+ hr- cancer in one breast in June. Originally the plan was lumpectomy/ radio but things escalated and I had a lumpectomy, further shave and then a third op as a clearance mastectomy with reconstruction. Oncotype testing found that chemo would be beneficial so thatās my route. I do not need radio. Sentinel nodes clear.
I have been prescribed 12x paclitaxel and 4 x EC with biphosphonate infusions. Started pax 2 weeks ago and am due a third cycle + biphosphonates tomorrow. However, my liver ALT is playing up big style. It was elevated before my first chemo (not sure why, wondering if it was all the operations but anxious that itās more sinister). Iāve had bloods done today and just had a call that my ALT is significantly further elevated. I just have to try not to panic and wait on what my oncologist decides to do.
Hi @brambles1 just thought Iād reply as my LFTs have been elevated too. The first time was before my chemo and they wondered if it was to do with having 2 anaesthetics within a month. It had righted itself before my first chemo. Then the ALT and AST were both elevated before cycle 2 so it was deferred a week and they were fine again. The oncologist did send me for a CT chest, abdo, pelvis after the first abnormal result, and found probable cysts in my liver. Iāve just had an ultrasound liver today to confirm this. She did say some people just have a more sensitive liver and advised me not to be concerned, but itās hard not to worry isnāt it? Have they recommended any further investigations for you? I did have 3/29 positive lymph nodes and the oncologist said she had a low threshold for doing a CT so that might be why they investigated. All the best for your third cycle, whenever it happens
I really appreciate your responding to this. Itās not nice to have weird results outside the chemo but reassuring that itās something others have if you see what I mean!
Iāve had a liver and other internal organs ultrasound and the practitioner was happy with that. Weāll have to see what else they decide to do - Iām grateful for it but the specialist hospital for all these additional tests is almost an hour away so it adds to the afternoon lift for bloods, lift next day for chemo requirements. Iām not quite driving yet.
Itās interesting that they perhaps linked it to 2x surgeries. I had 3 GAs in the space of 10 weeks and was under for 5 hours on the last one.
Hopefully things will settle but like everyone else, I just want to be through my treatment!
I had my 3rd EC on Monday. Some nausea and loss of appetite but nothing too bad.
Just really struggling to sleep. I take my last lot of steroids today so am hoping that will help my sleep.
I shaved my hair off last week, am not cold capping, as it was literally falling out in clumps and I had a dodgy looking comb over the shedding seems to have stopped now though and wondering if it will start again after my last round?
Hi Ladies going through cold capping, please persevere, but please donāt wash your hair in hot water or use the hair dryer on hot, warm to cool water and warm to cool hair dryer best. and find a natural shampoo worked best for me.
Introduce Zinc into your diet - pumpkin seeds into yur cereal, and conditioner for your nails. try and keep both hands and feet cool during treatment, to prevent against later term peripheral numbness. You can do this, several thousands of other women myself included have done this. My hair shed 50%, but i was warned not to wash in the shower, best over the sink. My hair grew back with tight curls and i was ready to go grey. thats the other point donāt get you hair dyed for over 12 months. Wide toothed comb or just your fingers run through enough for now. Good luck. ps im 2 years after the treatment, hair still thicker and curlier. lol Moonsox xxx
I had no idea that I wasnāt to wash my hair in the shower! I guess how much hair loss you find acceptable, depends on the colour, style, length and texture of your hair.
Got my wig today and am really delighted with it too! Now every day can be a good hair day!
Aderans Trendco in Nottingham are excellent. The stylist was highly professional, sensitive and patient to my needs. Nothing was too much trouble!
Keep a small snipping of your hair before you get your grade 2 cut, if you want to match the colour to a wig-it really helps!
I wash my hair in the shower but cooler than normal. I have the majority of my hair still after 8 weekly Paclitaxel. Last time I cold capped I coloured my hair after 3 months but they used less harsh chemicals. It grew fine but I kept it short anyway for a while.
Morning Starra. Thereās a short chat about this from post 167^^.
It seems it is very individual to each patient at what stage they will suspend treatment. Mine (paclitaxel) went ahead this week at alt 277. They said the threshold for me currently to be suspended is 320 so Iām fully expecting next weekās to be cancelled. If it goes ahead, it will be at 75% of the previous dose. Iāve already had liver, pancreas and kidney ultrasounds and have been referred for further support from gastro.
They have deferred the bisphosphonates I was due to have on this cycle as Iām avoiding painkillers due to the elevated alt.
I cold capped without paracetamol this week and it was fine.
Iām washing my hair once weekly in the shower, lukewarm water, no rubbing, air drying. Otherwise when I shower I move the shower head down so that my own head doesnāt get wet. I do my face care in the sink and make a treat of this twice daily.
Awake since 4am. Chemo is biting my sleep routine on the bum!
Popping in from September starters - Iāve had high ALTs twice and had two deferrals, very frustrating. The highest mine went was 197. I didnāt have any other investigations as the levels came back down without any intervention, so they decided it was obviously chemo related.
I move on to paclitaxel for my next 4 treatments and was told this is kinder on the liver, so Iām a bit disconcerted to see people are having this issue on taxol
Oh bless you Tracey, sorry to hear about the sleep. Iāve been the same even competing the steroids so Iāve had to get some sleeping tablets from the GP as Iām so exhausted. I think my iron count it low too which isnāt ideal.
We are very similar, Iām thinking of just shaving my head and stopping the cold cap, itās not working for me. These decisions are so tough. Hope you sleep well. x
This is so similar to me after cycle 2. The insomnia is really awful, but Iām predisposed to it anyway I think! Iāve woken up with some sort of athletes foot on both feet which Iāve never had before, guess Iām run down, but so worried my next cycle (Friday) will be delayedā¦anyone else had this?! Thankfully this cycle my gums have been okay which is weird but a small blessing. Sending everyone love. And a photo of my bald head too my son now taller than me thanks to his hair!
you look great pink66 
Love, Rose
the shedding seems to have stopped now though and wondering if it will start again after my last round?
my son now taller than me thanks to his hair!