Hi Lesley and Shi
Thanks for your advice, ice lollies on tomorrow’s shopping list.
x
hi all
just had the call from the unit
I’m back on the anti-emetics for a couple of days - if they dont work, then they have told me to go to my GP - not the best place to be??? to get a stronger prescription
As for the tingling, she will inform the onc and suggests that the dosage might be reduced for next time!
Lets hope these meds work!
L
thanks for all the reassuring words - it’s good to here others are having ‘funny boobs’ as well!
I have been to the GP - drove down in the dark! and got some new meds, it’s only been just over an hour but they seem to be working already - bring it on!!
Hope everyone has a fab evening and a good restful sleep
xx
Hi all yes I have had quite a bit of tingling and numbness. Mainly in my hands and on my face particularly around my lips. It’s worse around day 5-8 then only comes back if I get tired. 1st cycle it lasted longer and was worse than the second but I was very busy and tired.
My hair started to loosen around 17 of first cycle, hubby shaved it short on day 4 second cycle and I’m having 3rd one tomorrow and I have a couple of small patches right on top towards the back and a light covering of fluff and that’s all now. Unfortunately still have leg hair hoping that will go this cycle.
I have also had tenderness in my lumpectomy breast and under the arm where the nodes were taken. I think because the chemo targets rapidly dividing cells it affects the new tissues that are still healing.
Evening everyone ? I’m all set to have a port fitted Saturday morning. This will go under my right arm (mastectomy & lymph nodes removed on left) so will make the giving of my chemo easier as I have narrow veins. I think they can also take my blood from here - does anyone know about this?
My injections finished yesterday (10 days) and after Saturday I took ibuprofen Sunday & yesterday and I was fine. I was told my nadir were days 7-14, so only 2 more days to go!!! (Today is day 12) Apart from losing a fair few strands of hair last week, it’s settled down and like Otter feels nice and soft. I have healthy window of 5 days before going back to onc & then chemo 2, two days later.
Welcome Carole - I fully understand where you’re coming from. I was uncertain before I started as I didn’t receive a lot of information beforehand - I took my daughter with me and to be fair the experience wasn’t anywhere as bad as I thought it would be, the nurses were lovely and I felt fine once we were finished. Good luck to you and remember to drink plenty the day before, on the chemo day and after to keep yourself hydrated and to help flush everything through. Also take anti sickness meds as advised. And Lesley, I 'll drag you along as your 6 days behind me!! ?
Otter it’s great you were up to driving - the look good feel better sounds good, something nice to look out for
Wishing you all well xx ??
Jc if you jump on our Oct thread then we have girls with ports and Hickman who could answer your questions on this if you need help. ??
shi xx
Thanks Shi , I’ll have a look ??
Hi ladies, good to hear some high spirits. Really good you’re sharing your experiences as everyone is at different stages of treatment.
I’ll try to answer some of your questions from my experience, not very good at remembering who said what though!
I had a port fitted which was great for all 14 chemo cycles. Doc put it below my collarbone and carefully positioned it so that my bra strap covers the scar. Not all nurses are trained to take blood tests through the port.
I cold capped and had the scalp tingling around day 17 of first cycle and lost what seemed like several handfuls but in reality my hair thinned evenly all over so no noticeable patches. The “lady garden” went first which was a bit of a shock! Also lost underarm, leg and facial hair. My very thick eyebrows thinned to a more normal amount and eyelashes waited til chemo finished before they departed, but grew back very quickly.
No one warned me but the E part of FEC (Epirubicin) makes your wee go pink in the first 12 hours or so, so don’t be alarmed!
Exercise - keep doing whatever you are comfortable with. Pre diagnosis I was going to the gym, doing yoga, combat, swimming and horse riding. I kept up the yoga throughout my treatment plus some walking in the fresh air. If it feels right then do it.
I found that avoiding bugs and public places during the “low” times was difficult as a busy mum of 2 who brought home all sorts from school. I was actually cold/flu free throughout but did have a very slow healing wound and infection.
Talking of flu, get a flu jab in plenty of time prior to chemo starting.
Look good feel better is a fantastic service if you feel up to it. They get booked up quickly so you need to be organised.
I found my GP was amazing and always available to talk to me over the phone, if I needed any mess for side effects he prescribed over the phone and I got friends/family to pick it up.
Stock up the freezer with easy healthy meals in advance when you’re feeling up to it.
My oncologist didn’t advise painting my nails dark as it prevents you being able to see changes. I used lots of hand and nail cream (Manuka honey from health shop) and gloves. My nails were a bit brittle and flakey but nothing major.
See if you have any local support groups or access to complimentary pampering/therapies at hospices or through your hospital. Some areas are much better serviced than others.
Hope some of this is helpful and reassuring, feel free to quiz me on anything else and I’ll do my best to answer questions.
It’s a bit predictable, but keep going, keep talking and you will get to the other side of this horrible place you are in right now. You never know, some good things may come out of it.
Virtual hugs to all xxx
Hello everyone, I feel I have to clarify and put myself well in my place - I am far from a runner and no running of any real kind has happened. I have managed though to exercise daily since chemo. Some days easier than others. I do a video class of some kind in my sitting room (curtains closed) and then also try to get out for a couple of walking laps around the park each day. I find it an enormous help, especially when I least feel like. However, any ideas of this lean, mean running machine bounding round gazelle-like is NOT what is happening, I promise!
Love and healing thoughts to everyone on their chemo journey. It is day 7 for me now and thanks to the power of Movicol, I am doing okay. xx
Hello ladies…I have just come to introduce myself as I’m due to start my chemo in the next two weeks. Saw oncologist yesterday, we agreed on 6x FEC with herceptin starting after rather than from half way through and swapping to Docetaxal (?? spelling). Was offered cold cap or paxman cap and although I am obsessively worried about hair loss I have declined. I spoke to surgeon and two different BCN’s and they seem to think patchy loss still so think I am best to get on with it rather than prolong the agony. Have bought several hats for outside but need some thin soft ones for inside and bed etc. Seeing hairdresser next week and think get long hair cut shorter, maybe not really short but different cut. Maybe shorter again once I’ve got used to it. I feel really vain focusing on one thing.
Looking forward to chatting with you all. Hope you are getting through it ok so far. Hugs to you all xxx
Day 7 for me and I have arisen as a new woman!!
The new anti-emetics have done the trick and I feel as if I can climb back out into the world. … without peaking too soon, of course!
Annakarenina, you might not be a gazelle but the fact that you are doing all this exercise puts you at a distinct advantage, I am definitely more of a Pumba!!
Mamadeacs , dont worry about obsessing about your hair - I was exactly the same. I had mine cut super short from below shoulder length a week prior to treatment. No movement yet but that’s to be expected.
I’m hoping the weather continues to brighten as I plan a walk by the sea later!
take care all
xx
Morning
Riversidedawn, thank you for your comments - they were very useful ?
Hi mamadeacs, I obsessed about my hair too and had it cut in stages, firstly to a shoulder length bob and I am now sporting a stylish quirky longish curly crop. I’ve enjoyed trying the different styles, giving me ideas for after. I agree with Meesh - it’s worth getting a wig now to get a good colourmatch, unless you fancy a complete colour change!
Lesley, I think I need to come and live with you - I want to walk by the sea too, walking round town doesn’t quite do it!! ?
Off for some complimentary reflexology ?
Enjoy your Wednesday xx
????
Silk pillowcase too ladies softer when you are loosing hair and also softer for regrowth. Also beauty despite cancer do a good scalp care kit too think you might need the oil separately now though as don’t think they include that anymore, it was recommended to me by someone on earlier thread that I know and once she swapped to t from fec her hair started to come back. Hope that helps a bit. ??shi xx
Hello everyone sorry not been on for a while …hope your all doing well…
I’m having my 3rd chemo tomorrow carboplatin and docetaxel and hormone therapy treatment,I’m using cold cap and lost about 20% of my hair underneath the 2nd cycle…
I think the cold cap wasn’t for proper this time tho as I said when I left the hospital that day…
Any having same treatment using cold cap please let me know how your hair has been thanks sam x
Don’t stress about being stressed about your hair darling, it’s completely normal thing to worry about! I cut my beloved long hair to a messy bob, which is much trendier and I should have done it a long time ago (!). I wear a sleep hair net, and use a silk pillow but I still wash it, and style it a bit, because that makes me feel a little better, and frankly that’s the only thing that matters. I’m Day 15 and small handfuls starting coming out today…as did the rest of the body hair (think of the savings for waxes!). I thought this would be the worst thing in the world, but you know what, emotionally I feel so much further on from how I felt before the chemo started, and more accepting of the process, and the hair loss hasn’t freaked me out as I thought it would. So many women absolutely rock great wigs, wraps, scarfs and turbans! Nevertheless, I’m going to continue with the cold cap (not as bad as I’d expected while it was on). While it doesn’t necessarily save everyone from complete loss the evidence is that it certainly slows/delays the shedding. And with so much changing so quickly- almost every aspect of our lives is touched by this diagnosis- for me right now putting it off for as long as I can Is giving me space to deal with things in my own time. I was surprised at how negative my own unit were about the cap but I guess they don’t want to raise people’s hope or expectations. It’s a personal choice, so don’t be put off if it’s important to you!! Xx
Incidentally, I had my eyebrows Microbladed the weekend I was diagnosed, most places do a 50%discount. If you’ve still got time I’d recommend it!
Thanks milliemoo
Yes I’ve lost all my body hair apart from arm,eyebrows and lashes…legs grow back abit prickly lol…
I will continue but this seems to be the worst part for me as I had lovely long blonde hair and want to try and save as my much as possible xx
evening all
I have had a fantastic day - didnt manage to get to the sea, it was a bit grey in the end, but worked loads and baked!
I have become a recent fan of bamboo bedding, very silky and kind to the skin and hair. Also antibacterial etc.
I’ve got a few bamboo ‘hats’ for the house etc.
xx
Thanks ladies…you are all ace! I have had a word with myself and although I will be a wreck the week it comes out I know I will deal with it. Not keen on wigs as they give me the creeps but I will speak to the wig person at least, maybe I will be converted. The only benefit personally I can see is that I won’t need to explain anything to my mum who has Altzheimers. Doesn’t tinedrag when you are waiting for a start date! Xx
*time drag - ruddy typos!
Hi, can nosebleeds be a possible SE of fec? I’m starting to worry about my blood cells as I have it all at once - period and nosebleeds 
Mamadeacs, I feel the same about a wig ? I’ve seen the wig lady once, have @nother appointment next week, but it’s unlikely I will bring something home … I think I should invest in hats instead.