Thanks for the birthday wishes. So glad it was such a sunny day for my trip to Brighton. It’s been hideous today- wet and freezing. Just a question- I am definitely losing my middle fingernail on the right. There is a split all along the base and the nail is lifting off. What do I do??? I don’t have any plasters. Could I wrap it in micropore tape or something similar? I think the other nails are going to follow suit soon. Can’t see how I’ll save many of them as they all look discoloured and just plain odd! Oh well. I presume they just grow back eventually but just wondering how you protect the nail bed whilst your waiting. Any ideas welcome.
My LGFB session was interesting, I don’t really wear make up usually except for a bit of mascara and lipstick so working out what to do with foundation etc was a revelation, I did try to say I didn’t want any blusher as I have enough problems with facial flushing as it! However, I was persuaded to try everything, It was fun to experiment but when I went to pick my daughter up from school she looked at me quizzically and remarked that I looked like a goth! My OH has just got in from work and said. “It’s nice make up but It’s just not you’! I’m now desperate to take it off as it feels heavy and uncomfortable. Still I met a bunch of lovely ladies and enjoyed the social side.. Also I’ll definitely use the cleanser and moisturiser etc....
Hope everyone has a restful evening ahead. I am still shattered so off for another nap. Kip, I thought I’d got away with the aches and pains but as soon as I stop and lie down I feel my whole body aching and I understand what you mean about feeling a 100! I seem to remember someone telling me that putting Epsom salt in your bath can be soothing so I might try and get some tomorrow.
Sorry I can’t help with the prostheses issue. My right side is slightly smaller than the left but as I’ll be having further surgery in Jan I don’t think it’s worth getting anything in the mean time to even things out.
My plan to eat loads to try to increase the fat on my tummy so I have enough for two reconstructed breasts, isn’t really working- i’m Just putting on weight everywhere else and feeling sick!! I’ll be interested to hear what the consultant at the Marsden says on Monday. I’m sure I heard that they can use your thighs and I definitely have enough for two on them! Has anyone heard of this procedure- I think it’s called TUG?
Take care xxx
Shi one side is higher than the other not bigger (although my husband says its not noticeable) so not sure if that will work will it? Ta. X
CDC - happy belated birthday too.. glad you had a great day, sounds perfect although very tiring. I am getting a little apprehensive about the Rads but just want to get started with it, it will be a pain going every day and at a time when I should be starting Christmas shopping but havent! EEK...but as many have said, after chemo nothing can be as bad. Although I have to say, these aches and pains are awful, I feel 100 years old today, feet, toes, ankles, calfs, knees, bum and back all stiff. I did manage to hula hoop for 10 minutes though and it did help to get things moving. It is causing sleeping isues though, as I go to sleep no problem but get so stiff in one position that I have wake up adjust position and this goes on most of the night... also having hot flush in the night too but thats fairly manageable. Keeping fingers crossed the aches and pains wear off as the chemo slings its hook! (although have read it can take months/years to go... oh crikey).
Reddi - sorry to hear the pain is back again, focus on Thanks Giving and enjoy that.
Shi - Am up and dancing even with the 100 year old joints... hand bag down and bopping away...la la la la la...
Hi Reddi so good to put a face to a name, looking forward to seeing the photo with the new growth. I was told today i look like Judy Dench!!! I used to dye my hair but jt was a sort of dark blonde/light brown although i had grey bits i dont know if i was this grey!! Oh well just loving having hair again.
@Kip Aw, look at all that hair! What color was it before treatment?
Mine seems to be growing in the same color as before -- complete with the grey patches that I've been dying for decades and now am seeing in full glory for the first time. Will post a pic of my (less luxurious) fuzz once the shingles patch on my forehead clears up (it's not pleasant). For now, a belated baldie pic from me -- taken about a month ago, near the end of cycle 5. I never shaved after my brutalist pixie; just let it fall out in the end. Lush bar is at the ready, to start after day 15 of cycle 7!
Hello everyone, good to read some positive stuff going on. Red Rose your nails do look sore but hopefully they will be off soon with lovely new ones back in time for the wedding. Enjoy that christmas break when you get it. It looks like we will be starting Rads almost together, j start on 29th nov. Good news about the spikes starting, i found mine gew very quickly once it got going although very white. Also hair growing everywhere now!!! I use the Lush bar Shi mentioned its lovely! Ive attached a photo.. excuse the wrinkles and bags just woken up...😁
CDC, i too have the face fluff... Am hoping it stops soon or ill have to get a job as Father Christmas!! Good news on ringing the bell and thanks for the lovely description of you hangjng out the washing... Isnt it lovely how the small things can mean so much... I had a big smile yesterday when i could raise my arm to the top of the door.. ifs still stiff and sore but it felt good!
The tamoxifen is going ok, had 4 now a d so far ok, no extra sweats or problems.. still keeping fingers crossed it continues. However the aches and pains from chemo continue.. feet, thighs, calfs, back feel like an old woman!
@RedRose Condolences for your nails. I can see how you'd want those hanging on by (less than) a nail to fall off so that you can get the new nails growing and some relief from the discomfort. And such nice news that you'll have a break for Christmas, and that you're starting to get a little fuzz. Eyelashes surely must not be far behind. New normal, here we come.
@cdc Here's to ringing the bell today. (Though I know you'll be chatting with your oncologist next week and might sneak some more paclitaxel in, I say celebrate today and then again later, if you get some more cycles in.)
I'll have a look at that Georgie, thought not sure its a bit too late for some of them. You do seem to be collecting referrals don't you. Hope they get that sorted for you and also probably a good idea to wait to start Rads once you are feeling a bit stronger, you have had a rough time of late.
I know I only had a little 75% dose of T but I used polybalm, which my consultant recommended and trialled at my hospital. I had to coat finger and toe nails 3 times a day, and massage in, and mine are fine, so much so that I would recommend it fully. It was expensive but worth it, and I have noticed that my nails feel stronger. I think you can also use it after chemo. Reddi, did you go ahead with this?
Link into polybalm: www.polybalm.com
I start rads on 10th December. I was supposed to start at the end of November, but I asked for it to be delayed so that I could recover more from the side effects, including the blood clot on my lung and the 3 bouts of sepsis. I'm still breathless and coughing a lot.
My breast care nurses are amazing! They saw me yesterday and helped me get in touch with my oncologist, and I also had them look at my boobs as the affected side is still so swollen. They also arranged a scan, and found that the swelling isn't a seroma, and they have referred me to lymphoedema nurses to check out.
Ah well, another referral!.... anyone would think I am trying to 'collect' referrals! 😩
Bye for now
Thanks Reddi, I'll invest in some, they look like they are going to dry up completely and fall off! EEK
@Kip I am sure you've already got this lined up, but just in case: get some cuticle oil -- OPI makes a version that brushes on, and Boots has a drop applicator version -- and apply it 2-3 times a day. That should help with the dryness and flaking. (I ended up taking off my nail varnish midway through first T cycle and doing intense moisturizing instead as I had dry nails before chemo and worried about not being able to treat the nails themselves.)
HI CDC - wow to have the last chemo will be great, I know its not the full amount you were initially set to have but the equivalent to 3 docetaxols seems to be the standard doesn't it, thats what I've had. It will be a relief for you to get to the end of that and let your body get some normality back. I've found the se's after finishing chemo are fading, just the aches still and the nasty looking nails, apart from that feeling ok, except the naff armpit which is still stiff and tender and numb.
Sally - shame about the trial, but I guess better to be safe than sorry if it turns out you can't do it. How do you feel about having more Rads if they suggest it?
I've now had 2 tamoxifen and so far ok, awake again in the night, but I think that is just me nowadays, I was constantly waking up hot before I started them so nothing new there... I am sure it will be like chemo and cummulative but fingers crossed it stays ok.
Sorry I knew it was you with the eye problems- forget to put your name before that sentence. I do hope the painkillers and steroids help.
Had a hectic day so will post properly later but it looks like tomorrow may be my last chemo! Oncologist didn’t really want me to go ahead due to the neuropathy but I’ve asked to have one more (should have another 4). I figure if I can do tomorrow I’ve had the equivalent of 3 docetaxel which is what many seem to have had, I’ll have a review in a week for the final decision.
Have a a good evening everyone. X
oh dear Reddi sorry to hear you have shingles to add to everything else. My Husband had it and its not nice. Hope you don't suffer too much and that the chemo can go ahead or not if thats what you would prefer.
Sally - I do sympathise with the hair loss, I read all the side effects on the Tamoxifen leaflet and one of those is hair thinning and am hoping this doesn't happen, am only just getting used to my silver skinhead! You did so well with the ice cap too.
CDC I took my first Tamoxifen last night before bed, thought I'd start with nighttimes and see what happens. So far so good, I was able to get to sleep but did wake in the night, although I have been doing this for some months now, had a hot flush, but no worse than those I was already getting and I still have the aches and pains in joints and back from the hateful Docetaxol. So far today feeling fine.. but having only had one I am sure there is more laying in wait for me. At the moment the aches and pains are the problem for me and the fact I think I have developed cording under my arm, although the seroma is almost gone. Just seems you get over one thing only to have something else crop up. When will get a break??? Now feeling like a 90 year old when I bend or get up and finding walking painful sometimes.... whatever next.
@cdc Throbbing eye pain is me! (Sally has it hard enough as is.) Pain is only occasionally severe, typically when I get a streak of it across my scalp (nicely following a line of little sores, I discovered when mapping it for my OH, which kinda seals the diagnosis). The eye forehead / above eye area is more mild to moderate pain. I can take painkillers (carefully); today's steroids for chemo should also help, as will the antivirals, which should stop it from spreading.
I knew the chicken pox virus could be reactivated by stress, as my sister had shingles last year. And I've had a stressful couple of weeks. But I hadn't considered *why* stress is the trigger; I now know that the immune system generally keeps the remaining virus in check, but during periods of stress, it may not be up to the job. And people who have a compromised immune system -- HIV, bone marrow transplant, chemotherapy -- are of course then at risk for it, too.
Sally it really does seem so unfair you are now getting so many side effects. I’ve also heard of some people being pur on the same drug but from a different the manufacturer and faring better. There must be an alternative.. The throbbing eye pain sounds particularly grim. Hope your meeting with the ophthalmologist is helpful
Reddi I’m so sorry to hear about the shingles -my father in law has it too. He has multiple myeloma but a stern cell transplant was very successful. He did have to have chemotherapy beforehand however, and he has struggled with the pain from the shingles ever since. Is it related to having cancer treatment? Is there anything that can help. Relieve the symptoms? Hope your chemo goes ahead on a Friday. Can’t believe it’s your last one!
I’ve got my transfer meeting with the Marsden on the 26th. Wondering if they’ll say I can stop the chemo as I will have two more Paclitaxel under my belt (, albeit at a reduced dose) which will be the equivalent of me having had 3 docetaxol.
Kip how are you doing after taking your first tamoxifen, I’ve seen there is a whole forum on here for hormone therapy,
Take Care everyone x
Quite a few of the symptoms overlap with chemo side-effects, and my pain level isn't too bad, thankfully. But I think I'll need to visit the ophthalmologist tomorrow so that they can check out my cornea, as the throbbing is getting a tad too persistent.
@Sally -- That is so upsetting. Worth noting that I am sure I have read on another thread that some people have trouble with letrozole and have been switched to one of the other two AIs and fared much better. (And some do well in letrozole, and don't do well on another.) So do report your symptoms -- especially lack of appetite -- to your team and see if they might want you to switch sooner rather than later. (There might be a "breaking in" process, of course, where they want you to stick with it for a few weeks before trying something else.)
In personal news: just in time for cycle 7 -- last hurrah! -- it seems I've got shingles. I just thought I had a rash on my forehead, some eyebrow acne from hair regrowth, and a sty on my eyelid from lash regrowth. The pain and weird tingling should have been a clue. Now on antivirals and curious to see if Friday's chemo will be the full cocktail or if I'll only be given my HER2 infusions and skip the docetaxel (an option thrown out by the oncologist this morning). My body does not like this stuff.
Oh Sally how unfair about the hair, is it caused by the medication? I just picked up my tamoxifen and bit worried about taking it but needs must. Big hugs to you. Xxx
Oh Sally, I'm so sorry, I'd want to cry too, after you'd done so well with your hair through chemo. Have you spoken to a BCN at all? Hugs
I've just started taking Anastrozole and I'm fearful of thinning hair from it. Like you I've already gone from long thick hair to short and the thought of it not growing back properly is almost too much to bear.