Take much longer now - morning, noon and night - to deal with all the ongoing issues related to chemo symptoms after 18 week taxol treatment finished a month ago... 🙄
I thought it might be helpful to post what they are. Many are from advice from ladies on this wonderful forum and some I have googled or worked out for myself. Some questions in there as well, always on on going project!
Forcontinuinghairloss I thought I was getting away with this one, but suddenly it's now decided to really fall like snow, so it's back to head scarves. What remains is sparse and about 8 cms long. Q: Shall I shave now, will it promote new growth? I tried nizoral shampoo as I googled it can promote hair growth. However used it a couple of times, read the instructions which said it could cause hair loss! so maybe that's the culprit. Q: Anyone any better ideas re shampoos ? Meanwhile >> I use Moroccan argon oil after hair washing >> dove baby shampoo plus a sieve in the plug hole.
Skincare My skin now bruises easily and is very dry and thin so >> I mainly use body oils, just baby oil and/or bio oil 2x a day. >> mix savlon and paw paw ointment for the minor sores esp on my back which don't heal easily >> Vaseline for nose lining which is extremely thin now
Nail /handcare One of the strangest recent symptoms is developing onycholysis which is finger nails lifting from the nail bed from top down along with strange discolouration on the nail itself. This is worse for me on the thumb, fore and middle fingers. Q: Not ever seen a post on this. Has any one else had this? So I am being.... >> being hyper about hand / nail hygiene using anti bacterial hand wash, dilute tea oil and nail polish (nailberry strengthen and breathe) as nails extremely weak and brittle. >> using hand creams after every hand wash and cuticle cream ( heathcote and ivory) at night. >> using disposable vinyl gloves for food prep etc plus marigolds as ever. Now just ordered a pack of lightweight cotton gloves from Amazon as worried I am going to catch a nail and possibly tear it off, ouch even to think about it... >> get husband to peel oranges, find sellotape end, pull milk tab off, etc etc ......it's amazing how many pincer grip movements we make in a day 😆
Dryeyes Now no eyelashes, eyebrows on way out, puffy eyelids and dry eyes which makes for a very starey strange look so def need the eye liner and eyebrow pencil at the mo to draw my face... So using >> Blephasol lotion 2x daily to moisten eyelids ( optician recommend). >> Viscotears gel ointment on eyeballs as needed
Feet Neuropathy in feet ( and fingers) like other symptoms seem to be getting worse at the moment >> use aveeno and other foot creams to keep feet massaged, warm and moist, 2x daily >>Try not to sit for more than an hour, go out for a daily walk >> do basic feet and hand exercises. Think Kim sent this useful link to dana-farber.org >> I dug out my Revitive electrical foot/leg circulation boosting machine I bought sometime ago. Bought for my poor lower limb circulation problems, the blurb says it's effective for neuropathy as well. Suspect I need to use it consistently to feel benefits...
The one thing I haven't done is take any supplements, apart from daily fizzy tab vit C drink, alternated with a fizzy multi fit one. I noticed that Holland and Barrat are doing their penny sale so if you buy one item the repeat is 1p. Only has anyone ever taken vitamin B12 as this is one of the offers? Q: any other helpful, effective supplements to take whilst on this 3 month window of watch and wait?
Hope this is useful, any additional advice always welcome
Many thanks Janet x🌈
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Janet235
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Wow! When you write down everything it sounds as if you a bit of a zombie lookalike and I'm sure you are not, sweetie. Far from it. I only had the one dose of Taxol which almost killed me but did partially paralyse me with the neuropathy and i ended up in hopspital for a week.
Hair: I shaved mine off the first day some fell out as I wanted to send it to the Little Princess Trust - which I did. Saved the plug-holes too. Finally, it's growing, not a lot, but growing. More grey but still a lot of colour but not my original colour. It's a lot darker now but not bad for 69. Can't wait to see if it will be curly. I would like curly. Hair down below is not curly yet but it's not long enough. Hair on legs being weird and still not growing.
Skin: I gave up with my skin years ago. Always had really dry skin, that's why I've got lots of wrinkles now. Use all sorts of things. Even tried very expensive stuff. Waste of time on me. I take Vit E every day for skin - waste of time - and slap layers and layers of stuff on, but it's still dry. Carry a rose water spray in my bag to spray my face when I go out and loads of lippy balm. Most of the dust in my house is my skin.... Not noticed it any drier after Taxol. Thinking I should cover myself with lard as the Channel swimmers do.
Nails: Almost from day one I painted my finger and toe nails with Evonail. Hubby did it for me when I couldn't. There were posters up everywhere in the chemo clinic and the doctors and nurses recommend it for their chemo patients. Also, keep them out of daylight. Easy for toenails but not so easy for hands. Never had a nail problem at all, not even discolouration. They did get very hard and long and actually looked really nice. I bought coloured nail varnish for the first time in my life. Stopped doing the nails about a month ago and they have gone a bit bendy and flaky - as they were before - but still white and no sign of lifting now. But, my chemo has stopped.
Eyes: Eyebrows normal again, if not a bit thicker. One or two white ones in there now. They went patchy with just a few hairs left, but perhaps that's because I only had one Taxol and then one Taxotere. Eyelashes did get longer and curly in November, which was a great surprise, but then fell out. Started again but short and stubby so far. Never got dry eyes - I cried too much!!
Feet: Had severe neuropathy after Taxol from toes up to my hips. Couldn't walk and took morphine for the pain. You could have fried an egg on my feet as they were so hot but now back to normal. My normal is that I've always got cold feet except first thing in the morning when I wake up. Started taking L-Glutamine and Alpha Lipoic Acid as soon as I got out of hospital with the neuropathy (September) and only stopped two weeks ago. Considering I couldn't walk, use neither of my hands or my right arm and couldn't feel anything from the hips down or fingertips up, except severe pain, I'm amazed that now I just have slight numbness in the very tips of my fingers and toes. No pain, no tingling, no electric shocks when my fingertips touch something and I'm able to do everything I did before. In fact, I'm going back to my art and craft group tomorrow. Whooppeeee. Although I was only on Carbo/Avastin weekly after the Taxol/Taxotere incidents I still got an increase in the tingling on day 3 after each week so I upped the does of L-G and ALA for the day before, on the day and day after chemo and it did help to keep it away after that.
Supplements: I've always taken Vit C - 2,000 mg a day spread out during the day, Vit E, Vit D and a probiotic if I've got a bit of candida looming. Recently I started Magnesium with B vits and a separate B12 when my platelets dropped so low that the chemo was stopped for a while. I stopped Glucosamine & Chondroitin and Agnus Castus just before chemo started and haven't returned to them. I will not take the Agnus Castus again as my tumours are 98% oestrogen so they don't need any more. I get mild hot flushes and night sweats occasionally - even at my age - because I stopped the AG, but tell myself it's because the cancer in my ovaries is dying. Fooling myself more like.
As for watching and waiting I can't say. Haven't watched and waited very long yet as only just stopped chemo and with a PET looming next week I don't know what's going to happen after that. I've already been told I can't have any Tax.. drugs, ever. That's me told then. I'm sure there must be something though. I eat healthily most of the time with the occasional treat. Can drink alcohol as my mouth is normal now - I never got ulcers as I used bicarb based mouthwash - but I did get a dicky tummy and couldn't have hot or acidic food or drinks. Alcohol was a killer so I was tea-total for months. Nice to be off that regime.
That's it then. Hope some of it helps. I don't mind long posts. Mine are books.
Love and hugs to you and all the very best for your lovely future. Hopefully I'll have one too. xxxxxxxxxx
Thanks KRyssy for all that... just re reading as up early again after 3 am wee. Gave hubby fright of his life as he got up too and met this ghost sat on the loo. 👻. That gave me a laugh, he back to sleep in 5 mins, me 😳. Thhink this is mainly the on going steroids which cause this, but now down to 1 mg daily and aim to halve this when we return from holiday.
Evonail good recommend, darent put coloured polish on as the nail polish remover dissolved my nails when I put some on over Christmas....
Wow that’s a lot of side effects mine pale in significance compared. I had nail trouble on toenails so painted them a dark colour as someone recommended that and it seemed to work. Something to do with protecting them from light. It’s also on the Australian cancer health page
Didn’t lose hair but it did thin was recommended to use baby shampoo.
Aches and pains have lingered in hips and get occasional numbness in legs.
I take Vit C 1000mg and was taking apple cider vinegar as a lot of people swear by it. Bought turmeric tabs but GP talked me out of it. I use C oil too
I would definitely speak to Macmillan about supplements they told me what to avoid for first 6 months after chemo
I take B12 daily, it has helped with my energy levels, I’m not sure if it has made any difference to my neuropathy at all but it certainly hasn’t done me any harm.
My nails on my feet are still rubbish and you’ve described them perfectly, I use OPI avoplex oil which has really made a big difference to my hand nails which weren’t very nice at all post chemo (I too had my taxol weekly) but they’re now looking quite good, the toe ones are often hidden by thick woolly socks to keep my feet warm which helps with the neuropathy as does walking and knitting (this bit is obviously for my hands 😂) .
My hairdresser suggested that baby shampoo wasn’t best for my hair as the PH levels were all wrong for me. I used Nioxin shampoo and conditioner which stimulate the scalp and feels quite invigorating as it tingles. It’s pricey but my hair did grow back quite quickly. Argon oil is really lovely too.
I too lost my eyebrows and lashes post chemo, I also thought I’d got away with it but the lashes have come back nice and long, not quite as thick but they’re there. My brows have returned but are so fair they’re almost invisible, but they now match my ‘bottle’ blonde hair 😊.
My skin has always been very dry and bio oil is my saviour together with E45 cream and I eat lots of oily fish and high protein foods which do seem to help a little.
I hope all your symptoms start to lessen and you are able to be more you very soon. Thank you for sharing with us. Take lots of care ❤️Xx Jane
Thanks for all those tips, I will check them out.. the surprise for me is how the symptoms of post chemo seem to be worse now and more 'cumulative' than xpected. Just have to be patient and hope that combo of spring/ summer time and few months down the line will help resolve and damp down the bad after effects
That's assuming..... 😬, always a background worry...x
Thanks for all that advice, I am def going to get some B12 for starters. Going to ring my hairdresser this morning also (. He comes to my house and has been a friend for over 30 years). I haven't seen, or needed a hair cut for 6 months but it is looking extremely scrappy now, so it's decision time.
Reading about the finger and toe nails is just so frightening. I can now see a subtle change in the colour of my nails and also the half-moon is growing. I started with Evonail that Kryssy recommended but given that nothing happened to my nails first time round and nothing appeared to be happening, I stopped using it. Since you've mentioned what has happened to you, I have restarted it. Looking up onycholysis caused by chemo, exclusion of ultra-violet light does appear help, but there seem to be other causes too.
I lost most of my hair very quickly, and eyebrows with only a few eyelashes left.
My neuropathy worsens every week but only very slightly since I've been doing the exercises every day. I think the exercises must be helping.
The skin on my hands goes very red and peels slightly a few days after the infusion, but then recovers.
Skin flaking now. Started using E45 cream but not noticed any difference, bought some Aveeno lotion today. I don't take any vitamin supplements or other medication apart from some magnesium tablets but whenever I read about certain vitamins being good for OC, I try and eat foods rich in that vitamin, at least for a time. For years, I used to take a multi-vitamin and mineral supplement plus cod liver oil, prior to diagnosis.
I hadn't realised that symptoms might worsen after the weekly taxol finishes and I've booked a holiday.
I do hope the gloves help. It sounds so so painful.
All the best Janet. Despite all these side-effects you still sound very happy and in control!
I'd be interested to know if you detect an improvement. I think I can. I've probably got the slimmest ankles in the whole neighbourhood as I'm twirling them all the time!
Never sure what goes where and to whom when you post these replies, now I am wondering if I posted back to you rather than Anthea! Can you work it out?
Meanwhile I've not been so diligent about specific exercises but stretch move and massage feet fairly frequently and do them in passing as it were ...🙄. I will be doing the anti dvt ones on the plane on Saturday as it is a 4 hour flight
What I have done daily for a week is use my Revitive machine , but no discernible difference yet... do you find the numbness, intensity of strange foot feeling varies during the day? Sometimes it doesn't seem so bad and at other times I wonder if it will ever recede or improve.
Think this is a long term project, so have to be diligent about exercises etc... twirl on....💃
You have to look carefully at the indents and then you can see whose message who replied to. I think you did reply to me but I replied to Anthea so she will have got her reply. (Gosh this is worse than Ali's Tomorrow, Today and Yesterday!) Sometimes, there are a lot of intervening messages that are younger than yours which further confuses.
You would have received notification that I'd replied because it's your original post.
The intensity certainly changes and if I've been on my feet a lot, particularly moving slowly such as in a museum, shop etc. it gets worse as the day wears on. But not striding out on a hike so to speak.
If I dare let either the hands or feet get quite cold, the numbness really increases in intensity. I think there's something wrong with the way they feel heat and cold because I thought I'd scalded my hands on Christmas Day from the hot tap and rushed upstairs to put cold water on them and was surprised to discover they were not even pink, let alone red. The problem is still nowhere near as bad as first time round with three-weekly carbo/taxol though, which was also painful.
Did you get Helen's reply as it came through to me ? If not go back to my thread (I now realise the Dana Furber link I suggested wasn't a helpful one,) and find the one which is at the bottom where Helen has highlighted the link which takes you straight to the exercises....
Yes I am... met up with some friends I don't see that often and found myself giving advice to a lady who is in pain from urinary tract problems which haven't been properly diagnosed yet. She wanted to know how I remain so positive etc etc, which made me realise I am quite an optimistic person and on the whole have never really gone into depression mode despite some inevitable low points along the way...
Meanwhile the nail moons are rising on my finger nails!! When I look closely at the weird colouration the tips of my nails look quite white as if I had had a sort of bad French manicure, the browny, orange to about half way down, then sheen of pinky white stopping in an arch as if they were the moons. Also much longer look to the whole of my nail, they don't look to be mine, all very odd. I can see the new keratin underneath the lifted part , looks grungy and unclean, but darent poke down there,
Your positivity definitely comes through in your writing. We’re off hiking on Gozo! I’ve booked all the component parts individually, Rufus’s kennels, car parking at Gatwick, airport hotel, flights, bus tickets, ferry times, hotel, etc but with chemo brain I’ve had to write it all down, again and again, reread it, and carefully check the dates before pressing buy with my credit card (which I’ve mislaid - again). I never used to make such a palaver of things. I’ve got my walk book and maps.
It’s booked for not quite two weeks after my last chemo (mine is 24 weeks rather than your 18, because I get every fourth week off). I know some of the rocky scrambles I’ve planned near the coast may be tricky with the feet, in which case, we’ll have to detour inland. And, it’s Easter while we are there so we’ll be able to see lots of traditional processions etc. on Good Friday.
So, I must hope I don’t have trouble with my toe nails or I won’t be wearing my hiking sandals.
Thanks for your post Janet. I am 2 months post weekly carbo taxol and have found it a slow and erratic process, getting “back” to a better state. I have found energy levels a bit hard to predict, and my hair looks really odd these days, with bald bits and curly bits. I did get my friend next door, who is a hairdresser, to tidy it up but it is really a thing of weirdness tbh. I have considered having a number one army style cut ....
As for diet and supplements when I was at Penny Brohn I got their recipe book “Nourish” and use the recipes there as they focus on foods which contain what people need during and post chemo. I find my diet these days is really different compared to pre diagnosis. I eat lots of salads, seeds and nuts, nutibullet fruit mixes and green veg. I also manage too much cake but that is another story... I agree with Helen’s approach of eating food rich in the thing you need such as B vitamins or magnesium...
I try and remain positive and enjoy not going for 11hrs of chemo every week - remembering what that was like and going for a walk with the dog instead.
As for the CSN not getting back to you I would either talk to PALS or your onc. It is important they get back to us pronto. I have found this aspect to be the less amazing part of things at The Christie tbh.
I wish you a steady recovery and hope you get to enjoy your post chemo days more and more, especially with spring coming.
Hi Janet- I am 15 months post chemo. i also suffered nail bed issues, mostly on my thumbs. the tops going down started to separate and I still have some issues. i kept nails really short and had to wear finger protectors on thumbs so I would not rip off.
shaved my hair as it started to fall out and I felt in control with great wig.
I suffer from neuropathy badly in my feet from the Taxol. Nothing seems to work for me. If I don't wear hard sole shoes even indoors I am in a lot of discomfort. I am desperate. Yesterday I finally signed up for 6 MLS laser treatments which is not covered by insurance but FDA approved. Outcome TBD.
My eyes continue to be very dry. I don't know if its age related dry eye or from the chemo. About twice a year I have to use a steroid drop which really helps.
Hope you work everything out. Sending Hugs and well sishes.
Thanks for all that info, seems like it's an on going long haul to recovery - if ever - on post chemo symptoms, very similar to me and I've only just started!
What is MLS laser? Can you send me link, and hopefully post down the line as to how you get on
Think you post from Australia, I recognise that gorgeous blue wren?? Saw a few at a woodland garden centre my friend took us to when we were doing a tour a few years back. She lives about an hour south of Adelaide
Hi, I have got the nail bed one. My nails peel off in layers. I will follow your advice and get some nail cream. I have recently started wearing nail polish and was thinking it must be that. I suppose I could try stopping the nail polish as well.
The nail strengthening clear nail polish is already having a positive effect on my nails. I don't take it off but just paint on another layer every few days. Normal nail polish is much harsher I think and mustn't be taken off with nail polish remover with acetone in... I didn't realise there were different types!
That one dissolved my weak nails when I removed dark polish after Christmas . I had the strangest look across the top of some of my nails like scalloped shells where the 3/4 vertical ridges on the nail bed resisted, but the rest between went concave uuu uuu etc!
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Not noticed it any drier after Taxol. Thinking I should cover myself with lard as the Channel swimmers do.
Although I was only on Carbo/Avastin weekly after the Taxol/Taxotere incidents I still got an increase in the tingling on day 3 after each week so I upped the does of L-G and ALA for the day before, on the day and day after chemo and it did help to keep it away after that.
Remission (YAY!) and post chemo immune boosters
White Christmas??
Caelyx/carbo
Cold cap
