a lot of us from the chemo threads back from 2017 found Epsom salt baths helped with the vice like bone pain that can happen during chemo, just something you could try, just wanted to share it might help ??
Shi xx
Morning all
hope you are all well. Been away from this for a while with various dramas around side effects etc that it’s been draining. I do keep reading replies and pleased you are all ok and sorry for the rubbish some of you have been through.
Anyone had heart palpitations…like a lot over a few days? With one ECG machine in A & E they couldn’t keep me plugged in constantly so they could record an episode yesterday and spent nearly 12 hours just sitting there whilst they worked out what to do. which in the end was nothing. I did ask for an X-ray to see if my Picc line had moved out of place as that seemed logical and they did that but still don’t have results.
now awaiting my call from cancer hospital to see if they are happy to go ahead with todays chemo and Herceptin.
It is all one long waiting game and once been known for that person who runs around everywhere and is on the go, busy doing really great interesting things with family and work has now resulted in a person with no spontaneity and getting a bit tired of this all. Grateful and all that for finding it but exhausted.
anyway, back to the palpitations… anyone?
hair wise, i took my very long thick luscious locks down to a bob, then down to a number 1 all over a few days later and now it’s 0.5 with a very large bald top. Interesting look. I can just gently pull at the tiny stumps and they come out. My other question is do you just shave it then as I guess it’s stopped growing or do you leave it so look patchy nearly bald?!
many thanks
milly moo x
Morning All, Hope you are all coping OK on this difficult road to wellness?
Is it just me or is anyone else confused by the all the conflicting advice out there?
Take Vit C to boost the immune system v don’t take it as it interferes with chemo by flushing it out and stopping it doing its work?
Paint fingernails black Y/N?
Take Melatonin? I have white nail. Would this be a good idea or not and if so how much?
Fasting? No good for me with Type 1 diabetes but what am I missing?
Icing my feet and hands? Does one put feet and hands in an ice bucket and does the chemo suite provide this? If they offer cold caps for hair one would expect similar for hands and feet which is much more life changing and serious?
Alpha-lipoic acid? Should I be taking this or not?
Hyperbaric oxygen treatments? Would this help?
It’s all doing my head in!
Going in for EC chemo round three at lunchtime today (postponed from last week as very low neutrophils) Hoping they’ve come up as test results are embargoed on the patient portal to me. Anyone would think they were a state secret!
Sorry for the rant. Finding this all hard to cope with on my own.
With love to all from Tulip x
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Dear NanaChicken, Just wondering how you are getting along with the Herceptin and Paclitaxel? I am due to start this next month when I finish my four cycles of EC (I’m 65 and have ER+/HER2+ grade 3 ductal carcinoma). Must confess I am terrified of this next phase of treatment as cannot risk peripheral neuropathy. My Herceptin is going to be delivered with Pertuzamab in a Phesgo injection. Are you having the same or just an injection of Trastuzamab? Am thinking of pulling out of treatment altogether so keen to hear the experiences of others.
I hope you don’t mind my asking you about this and hope that you are keeping as well as possible on the treatment. With very best wishes from Tulip x
Oh @Tulip29 bless your racing mind! It is so hard to know the “right” thing to do and so confusing when everyone is so different and reacts so differently to treatment.
Firstly don’t ever apologise and its never a rant!
I have reynauds and so was advised against cold gloves and socks as I already suffer with painful cold hands. But I know my hospital would let you use a pair of theirs so definitely worth asking?
My fingernails have survived fine so far - actually they seem stronger but maybe because I’m not using weights/gyming and generally doing less to damage them?
Toenails though are black - but that could be from running! I have painted them my normal nude shade which has covered it all.
I haven’t taken any supplements at all because I didn’t want to risk taking anything I shouldn’t or messing up blood readings - again that’s a personal decision and not based on any fact!
I am sorry I can’t be of more help but I suppose with this we can’t be - which I find infuriating in itself! “You may get this affect, you may get that…” its like quite constant waiting game!
I’m in the lovely albeit temporary week 3 again - and cannot believe it has come around this quickly and already feels it is slipping away!
This round (3 of 7) was tougher, definitely, mentally as well as physically. The fatigue lasted so long, new aches and pains, and the eating issues mentally destroyed me - I just wanted to eat a meal and enjoy it without pain, horrendous aftertaste and to have an appetite! So many cancelled plans, tears… and disgusting supplement shakes ?
My “hair” is just a few stragglers now and I’ve finally braved my wigs out of the house. Just waiting for it all to go now and if it hasn’t by the weekend, I’ll chop it ready for round 4 to at least have one less annoyance of hair everywhere while I spend days horizontal!!
I knew it would all shift in time but it just wouldn’t come quick enough! BUT I am on the other side *finally* and trying to make the best of this week. I try to have at least a couple of fabulous ME things in the diary to give me strength through the tough weeks to come.
Tonight I went to my running club and was able to lead one of the groups and loved it and tomorrow I’m going into the office for work for the first time since diagnosis!
Thursday I am seeing a friend from uni days for painting at Emma Bridgewater and Friday I am making dinner for my incredible and supportive neighbours who have been a life line so far.
Oh and enjoying all the food I couldn’t for two weeks!
And then Saturday it all comes again… again… again… groan.
Sending love to you all xxx
Lots of difficult challenges, Tulip29 and Crawfy. Sending lots of love and hugs. ❤️
@Tulip29 , have you tried ringing the breast cancer now advice line 0808 800 6000? You can talk it all over with a breast cancer nurse, and give your specific medical current situation/history. That might help you sort out what to try and what to ignore.
@Crawfy I am full of admiration for you managing to include so many positive and nice things for yourself while you’re feeling good. I haven’t managed anything like that! I do miss my fitness routines (much lower grade than yours lol!) and I am just not confident enough to meet up with friends outside immediate family now that I’ve lost my hair. There’s a long time of baldness ahead of me, so I will probably have to get better at this, if I don’t want to become a total hermit!
I had Round 3 yesterday. That was my last EC, moving on to Docetaxel next (something like that - I’m rubbish at remembering the medical names for everything!). Has anyone any experience of that? No cold cap any more. Feeling ok, just tired and woozy.
Hugs to all.
I am just too determined… sometimes that’s a bad thing as I wear myself out entirely but I find it hard to stop…! I have the bottom layer of my hair so just wear a hat everyday and so far I’ve managed to face most people, although there are many occasions and social things I’ve purposely missed because of my hair. Or tiredness…or an excuse ?
I am on 6 rounds of Docetaxel - half way through - have had the tingling, fatigue, low low appetite and hair loss. But it’s not been *horrendous* although I’ve only had Docetaxel so nothing to compare to…
Also have herceptin injection and the horrible 7 day injections so actually lord knows what causes what symptoms!!
Thankyou, good to know. I’m not sure if I’ll be getting those injections yet. I guess I’ll find out soon enough.
Don’t wear yourself out, but I admire your positive attitude! ❤️
Thank you @RosehipBandit ❤️
@Tulip29 @Crawfy our nurses always here to chat on the number posted, over email or in the Ask Our Nurses board of this forum.
Hi Tulip
I’m due to have 7th of 12 weekly Paclitaxol tomorrow and have had 3 of my 3 weekly Herceptin injections so far. I’m trying not to think about the fact that they will carry on for a year in total. The Herceptin is just the Trastuzamab injection not combined with anything else. I seem to be tolerating it all ok although my stomach is definitely even worse the week after my injection. Bloods are fine so they are now only checking them every 3 weeks. Have lots of mild side effects, stomach issues, tiredness, problems sleeping, cold like symptoms etc etc and am having to pace myself as they are building up as the weeks go on. I seem to feel best the couple of days after treatment probably due to the steroids I have with the treatment. I am still working (work from home) and I make myself go for a walk each day.
I have mild neuropathy in my left hand but they are monitoring it and it comes and goes. It’s the same arm as my PICC line so there is the possibility it could be the nerves in my arm reacting to that as I am getting pains at the top of my arm too.
Hair was falling out rapidly 3 weeks in so shaved my head as I couldn’t stand the shedding. Eyebrows had already gone by then. Strangely still got my eyelashes although they are beginning to thin out now.
I’m also 65 and mine is ER-/HER2+ grade 3 ductal carcinoma.
Audrey xx
Well I go away for a few days And you lot post so much its taken me hours to catch up!!
Hope everyone is ok
All joking aside a call to the nurses sounds like good advice any day of the week particularly if you’re experiencing lots of side effects/ feeliing rubbish
I’m using a nail cream called polybalm. Put it on hand and toes and so far after 2 rounds nails and cuticles look fine
I’ve heard about using ice for hands and feet but quite honestly the cold cap is enough to handle / brain freeze. Good luck if you try it
Just got back from an oncology review, all good which is a relief
I’ll start radiotherapy in 2 lots of 5 days late August and back on hormone therapy then too but they’ve changed me from letrozole to anastrozole as I had such big mood swings, fingers crossed this one treats me better!
Also going to have zolendronic acid infusion ( hope I’ve spelt that right) to boost the prevention %
I did tai chi yesterday and pilates today with look good feel better charity and feel a little bit like my old self but know the next round is coming soon so I’ll hold onto these good days for a while yet
Take care everyone
Dear Nana Chicken, Thank you for sharing your experiences with me. This treatment is so brutal isn’t it?
I am still tormented in my mind as to whether to carry on or not.
I hope all will be well for you and wish you all the very best for a full and safe recovery. from Tulip x
How is it round 4 tomorrow already…? ? in some ways, it has felt endless when I was struggling to eat. Those two weeks were awful but the one(ish) ’good week’ was only 5/6 days this time and felt like it dissappeared on itself.
I suppose It’s good that the time flies between so its not quite long anxious wait like it was before round 1 and 2 but a bit longer feeling normal would be nice…
I excelled myself with cooking dinner for my neighbours, made vegan chickpea and coconut curry, mushroom pilau rice, flatbreads, saag aloo and onion bhaji all from scratch! And lots of leftovers for the freezer.
I’m restocked with yoghurts and supplement milkshakes and hoping I can tackle this one head on and a bit better mentally… *fingers crossed*
Exhausted now… thank god chemo is in the afternoon!
Love to each and every one of you warriors xxx
Hi hope everyone is doing ok.
just wanted to see if anyone else has been suffering from “spots”!! Since loosing my hair I have developed a lot of spots on the back of my head and also noticed my face in general is looking very spotty which I haven’t had since a teenager!! They are quite sore and angry so feel I want to treat them but not sure with what!!
hope anyone having treatment this week is feeling ok x
Hi hope everyone is doing ok.
just wanted to see if anyone else has been suffering from “spots”!! Since loosing my hair I have developed a lot of spots on the back of my head and also noticed my face in general is looking very spotty which I haven’t had since a teenager!! They are quite sore and angry so feel I want to treat them but not sure with what!!
hope anyone having treatment this week is feeling ok x
Hi Jo 71 chemo can cause spots, do speak to your team they might prescribe you something or suggest something for you or call the number here and speak to a nurse ??Shi xx
Hi @Jo 71 , I’ve had spots for a few days after each of my chemo so far, but they seem to last a few days then disappear, but I’d ask your team if they are persistent xx Hope you’re doing ok otherwise on this weird journey x
@PJDarlo @Shi thanks for your advice. When at home I don’t wear anything on my head to allow as much “air” to the spots but don’t seem to be improving. They are “under the skin bumps” really but just tend to get sore/itch. I will have a chat with the team tomorrow when I go for my weekly treatment again.
Oh I’m fed up ?
Fed up being so damn exhausted ? fed up being unable to enjoy food without mouth pain, horrendous aftertaste, heartburn, acid and stomach aches… I just want to be me again.
Round 4 of 6 and I’m day 8 post treatment and still feel like someone has hit me with a bus and stolen all my energy. I last maximum 4 hours before feeling so ill I have to sleep.
I’ve heard the side effects are cumulative so assume it’s normal to feel this grim.
Honestly I feel like the cancer was a doddle, didn’t even know I had it(!), treatment is the absolute bitch