Cold Capping and hair loss experience with TC chemo
I went for my first TC chemo session with cold capping on a Paxman. I've got wavy coarse hair, that's not particularly thick. Conditioner and water was applied with a focus on the top of the head. I was expecting a brain freeze but came nowhere near that in the 2.5 hours of the cold capping. I'm a skier so I'm comparing it to having damp hair on the snowfieds. The nurse said only about 20% of his patients keep their hair. I'm now paranoid it was ineffective and am sitting at home with a bag of ice in a large ziplock affixed to my head, which feels colder than the cap. Has anyone had a similar experience with cold cap not being as cold as you expected, but still had reasonable hair retention after that session?
Cold cap - is it worth continuing the frosty hell?
Hi ladies...having had two surgeries (masectomy and DIEP flap) in June / July I am now on the chemo journey 4 x AC (every 2 weeks) and then weekly Taxol for 12 weeks. It sucks. I have had 2 rounds of AC and tried the cold cap for both. The first time it was manageable although not fun but the last round (this Thursday just gone) was unbearable and I felt so unwell the entire 4 hours of chemo even with all the drugs. I am now wondering if I can do this for another 14 more rounds. This week will be the week my hair should start to fall out which fills me with dread but so does 14 more rounds of cold cap. I feel absolutely awful for days after chemo and have horrible nausea and the whole process is very overwhelming. Has anyone had AC and Taxol and done the cold cap for so many treatments with success? I would appreciate any advice as I now feel even more anxious about my next round. Thank you so much xIce cap or no ice cap? personal experiences?
Hi All, I was newly diagnosed mid December, have had surgery and am recovering well. I am due to start 12 weeks of weekly chemotherapy using paclitaxel. I will also be receiving Herceptin 3 weekly for 12 months and goserelin (hormone treatment) for 5 years. I have been told about ice caps to minimise or prevent hair loss. From reading it seems that this doesn't always work and also sounds painful. I was wondering if any of you had personal experience of using or trying the cap - obviously the good and the bad. I think it's not so much losing my hair that is bothering me, but the thought that then it is so public and there is no hiding it then :( Thank you so much.
Doxorubicin for 3 rounds and 12 weekly Paclitaxol
Hi All, I was diagnosed with ER + BC in Dec 2020, Grade 3 stage 2b, as it reached two lymph nodes. I had a pet scan after surgery biopsy results from lumpectomy, and there was no distant metastasis anywhere. I have just completed my third round of doxorubicin and Cyclophosphamide with one more too go. Hair has started well and truly coming out. I have 12 weeks of paclitaxol after this. I have heard that hair does come back during paclitaxol. If anyone can please let me know of your experience I would be very great full xx
Hair Growing Back
Hi All, I am on my last paclitaxel chemo next week and staring to look beyond the chemo bad ass. I am just completing 8 courses of dose dense chemo - 4 xAC, 4x Paclitaxel and am wondering how long it took for others to grow their hair back. I know this is assuming it has grown back sufficiently, as some women are unlucky with hair regrowth. Just hoping you can share you experiences of when your hair grew back enough to actually feel like you had enough to do something with and any changes in your hair regrowth from before chemo. Many thanks, Jo
Burning Ring of Fire.....
Good Morning Beautiful people, It is the wee hours of Saturday morning, I am wide awake due to a song......(Again) Like all the other songs that have made their way into my life and lately into these posts - there is a meaning behind the song choice! Mr. Johnny Cash - The Ring of Fire. To be honest, I can not believe I am about to impart this information - but you never know there might be someone out there, wondering if this does happen? Maybe not, or at least it is kept quiet, locked away with the Air Freshener in the Throne Room - however I, Lois of The Lion Heart - am willing to have giggles heard around the world and expose my story - if it helps make someone's day that bit brighter! So it all started because I had to visit my G.P. over a teeny hole that had opened up in my mastectomy wound that after 6 weeks is still not healed!!! He decides I should throw some more antibiotics at my body that literally rejected the last lot by bountiful vomiting episodes - thankfully prior to beginning Chemo! However, this round of antibiotics decided to take a different destination exit point - located, south of the border! I can assure you the first day - I was slightly exasperated, wondering about the ill-ease in my gut and due to the fact we only have one Throne Room in our house - the family were warned to maybe head home to their own places and the Husband was told - "Please keep your library reading episodes confined to the Lounge Room and not the Throne Room - thank you!" Second and Third Day - I informed my husband, maybe he should set up the Camping Port-a-loo for himself, because I was by now vacating from the southern border regions up to 8 times a day and I was seriously contemplating getting the Queer Eye Guys over to redesign a home for me within the Throne Room! Four Day - Where was I ??? Oh, I was the shriveled, wrinkly, preserved wee skeleton glued to the Throne, barely holding onto my now dead phone and wondering if I would ever be able to walk freely again - without screaming "Clear the way, Clear the bloody way - oh for shit's sake, get out of my bloody way - as my husband earnt himself a dirty look after I heard him say "You got the shit's alright! Could I ever get rid of that Burning Ring of Fire that now had taken up residence south of the border? Maybe I should buy some shares in Kleenex and Quilton Toilet Papers while I was glued to the Throne??? Would my arse ever love me again? Fifth Day - I had not seen my husband in 24 hours. Oh I knew he was alive and well. I could hear him making coffee, changing the NCIS DVD Discs, he was enjoying from the confines of his Couch. Gosh, I even smelt him making the Ham and Cheese Toasted Sandwiches and ask my daughter if she wanted some Chocolate Cake with her cup of tea! I heard them having conversations together. Oh how I wish I could join them! It was lonely in the Little Room but funny enough, NOONE wanted to sit with me! I will always remember Day Five - It was the day, Johnny Cash came to town! While being held hostage in the Throne Room for the 20 millionth time - I over heard my oldest daughter who had come to visit and my husband discussing music and I'm sure I heard something about "Johnny Cash" being muttered before huge gales of hysterical laughter bounded throughout the house! Next thing from the confines of the Throne Room, I heard the opening twang of a guitar and the dulcet tones of Mr. Johnny Cash start serenading our home - Oh No, They didn't??? Please no, not THAT SONG!!!!!!! Oh yes they did and with much glee, I heard them singing along with Mr. Cash as he sung the chorus lines....."And it burns, burns, the ring of Fire!" All I could do was hang my head and cry - I was in my own Folsom Prison! I had just been given a warning - The Southern Border was once again put on High Alert and preparing for evacuation in the Throne Room!! By Day Six - I felt weak, tired and my arse was complaining every time I even remotely went to sit down! I had been drinking 3+ litres of assorted fluids from water, Ginger Ale and very weak green tea daily. I had tried bread and crackers but they lasted 10-20 minutes tops. The solution came in the form of my Homemade Chicken noodle Soup which is predominantly a broth based soup - I chugged that down by the litres and after turfing the antibiotics on the orders of the Oncologist - I was back to normal and South of The Border was now in recovery mode. Because of the mass evacuations, Chemo had to be cancelled for the week. I spent every day either in the loo or at a doctor's appointment getting me sorted out. I had to have some IV fluids to help top me up. Thankfully next week, it is back to business of having the Chemo Love Juice and Johnny will be just another memory! Oh yes...before I forget - the another monumental thing this week - I made the decision to chop my hair off to a buzz cut after waking to find chunks of hair spread across my pillow. It is both daunting and liberating. My daughters and Husband stood at my side, cheered me on, cried tears and took a video for me, for when I want to see it. Oh My god - maybe I should change my name to Sinead??? Big Hugs and Laughter Lois .
HAIR LOSS
YIKES. I’m losing my hair. :'( I’m cold capping - I know hair still falls out with this , but my hair is thin and I don’t have a lot to lose. My family says you can’t tell , but I CAN and it sucks. And I hate having hair stick to my clothes and brush and my face and hang down from my scalp. I know this happens with the chemo, I just need to vent!!! Does it ever stop?!!!! AAAAAAARGH
I am Famous...well kind of. Officially a Paxman Pioneer for scalp cooling
A number of months ago I posted a picture on the Paxman facebook page of my hair on the last day of chemo. They contacted me and asked if I would put my story on their story website as one of their "Paxman Pioneers". They give you a list of questions they like answered in there with the aim to raise awareness and stop the negative vibes put out their by some of the medical profession. It's a bit of a monologue (and they left out some punctuation) but if anyone would like to have a look, here is the link. https://paxmanscalpcooling.com/experiences/testimonials/kerry-muscat I'll be signing autographs later hahahhaha.
