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.
Thanks CDC, I think i am going to try for nightime first off, if thats a problem I'll switch to morning, its got to be taken whatever so sleeping through it might be the best. Seems crazy to be worrying so much about a pill when we've had chemo, operations etc doesn't it.
Sally - What a mare! How on earth does this sort of thing happen... keep on at them!!
Aaaagh! Makes my blood boil Sally. It’s so unfair that you’re having to go to the effort of detailing all the inaccuracies and misinformation, Surely the whole point of the investigation was to work out what exactly had gone wrong, issue a fulsome apology and explain how they’d prevent anyone else going through what you’ve had to. I hope you can get some proper answers soon. Xx
Hello, just back from Rads planning session. All painless, tattoos in place and only took about 10 minutes. I saw a lovely nurse and when I burst into tears (been very emotional recently) she was very kind and talked me through my diagnosis and treatment adn explained its all normal to feel this way at Rads as its another treatment but also the light at the end of the tunnel. They got me to fill out a form to say how I was feeling and will offer me some therapies and counselling should I want it. Annoyingly before I could start the planning scan she said they hadn't got my results from the ANC (panic moment as thought I had been given someone elses last week) so she had to see the ONC as they had written I needed Rads to middle of chest. ONC told her the nodes were clear so I don't need the rads to the middle of the chest after all! Good job she checked. Wish they would talk to each other. Now going to start Rads on 29th November for 3 weeks. Still haven't got the Tamoxifen as the GP hasn't sorted it yet. I hope I do as well as your Mum does CDC, can't decide whether to take them last think at night or first thing in morning?
Hi Ladies, sorry for not replying over the weekend, had Mum to stay as OH and step dad took a boys holiday for the weekend. Been very busy.
Georgia Gee - hmm your seroma problems sound like mine, I am getting movement back in arm and the seroma is definately going down but its still there and tight around the joining bit from armpit to breast (or what was my breast). Its not painful but tight and still feels like a lump when I put my arm down. I guess I'll keep on with the exercises and see what happens. I keep my heart cushion pressed under there most of the time and that helps too. Just hope my arm movement is enough for the CT scan tomorrow.
JacB - good to hear that your seroma went eventually, although not great about the scar reopening. Nothing is ever straight forward is it.
Meesh73 - your post made me smile... I imagined sticking to the fridges in the supermarket with my knicker magnet.. I haven't read any very convincing posts about it helping but worth a try sometimes I guess. I haven't got the Tamoxifen yet as need to get to GPs to pick it up. Do you take yours in the morning or evening? Any ideas for whats best?
CDC - how did the chemo go, hope you are fairing ok this time round.
KTK - how are the rads going?
I've got CT scan tomorrow and rads planning, looking foward to getting this bit started, but actually after the euphoria of gettting good news on Thursday I've felt a bit down really, it seems its up and downs all the way doesn't it? Just now feels like another huge hill to climb and then the unknown after that?
RedRose - how are the nails? I'm going to remove my nail varnish and see whats what with mine, they keep breaking very short so not exactly attractive at the moment!
Hi Kip, Shi asked me to pop on here and let you know about the magnets. I've been wearing mine for months and I don't think it makes any difference but I'm still wearing it in case it's making even a tiny bit of difference 😂 I do find I sometimes get stuck to metal things if I'm not careful (like my work pass or handbag) 🙄 I tried acupuncture first but that didn't do anything either and I'm now taking sage tablets to no avail. That's not to say that none of those things would work for you. The best things I have to deal with the flushes are foldable fans (I have a few in different bags) and the cool pillow and they were also the cheapest 😂
Good luck with the rads, they're nowhere near as bad as the chemo 😊
That explains a few things..... my left breast and connecting bit to my arm is what is so enlarged - was so much bigger that I didn't fit into my clothes, but I think it has reduced a bit now as I said before.
I mentioned this to my oncologist last week, and she advised the same as you, about the gentle pressure, but didn't want to have a look at it. I was concerned that it might be breast lymphoedema, but I have radiotherapy planning next week, where I hope that might be ruled out. Its good to be able to chat through things on here isn't it, and to swap experiences as and when we need to. I'm sat here doing a bit of 'gentle pressure' liquid pushing out as I type with the other hand!.... I will also try to dig out the exercise sheet with the details as well.
I found it interesting that your team had been similar to mine about the seroma business.....
I was told that I would likely have a seroma, but that I shouldn't worry, because the nurses or the surgeon would drain it after the surgery. My particular surgeon does not even use a drain on anyone, but I was reassured when they told me they would drain anything that popped up.
So I called and made an appointment for this with BC nurse when a swelling began, and she said she could not drain much, and to wait to see the surgeon, which I did, and then he said that it would disappear on its own over time, and that he did not want to introduce another opportunity for infection by draining it. So I never had anything drained, and this was in June! I think it may have reduced slightly, but I'm not sure it's going to go away completely. The affected breast is now at least 2 cup sizes bigger than the other side! My op was a full node clearance plus lumpectomy. I know we are all different, but has anyone else had this?
Oh thanks for the heads up on the exercises, makes sense I guess... mental note to self... do the exercises!
Hope you get some answers regarding the complaint.
Hi Everyone, firstly let me just say I did feel a bit wary about posting my news yesterday as I am aware that some of you are still in the throws of chemo and all the other problems going on... please forgive me if it seemed crass but I'm rooting for you all, and will be waiting for you all in the rads department to compare tattoos!
CDC - good for you making a complaint.. without people like you making a stand these things will continue and it never ever should happen! I am sure it won't affect how they treat you at the hospital, if you had been listened to and treated correctly in the first place you wouldn't have had to make a complaint. I'm glad the chap on the phone was sympathetic and shocked to hear your story, just goes to prove that what has happened to you was horrendous! Be strong, you are doing this not only for yourself but for all those women out there who are facing the same challenges! I hadn't heard of Tamoxifen reducing the breast density but I will efinately mention my concerns it when I come to have a mammogram and will make a nuisance of myself until they do an U/S if I feel I need one!
CDC - hope chemo goes ok and the tingles don't get worse.
Knicker Magnets - hmmm, I'm not sure I believe they can do anything, but if I get to a point when I think I need one I might try it! I wonder if you would set of the alarms in an airport? Could be embarrassing. I had a massive hot flush last night and haven't even got the Tamoxifen yet!
Seroma - my nurse checked me over and it is going down so she didn't want to risk an infection by draining it, Just said to start exercising more to get the movement back before scar tissue sets in. I've got to get my arms up and behind my head for rads so must work on that.
On a different note - whilst with my Surgeon and nurse yesterday we were chatting about donating blood and my Surgeon confessed that she can't stand the sight of blood!!!! Crikey talk about the wrong profession...she said she donated blood and when she saw it she fainted!! The nurse then said she is needle phobic and can't ever donate blood as can't stand the thought of a needle! What a pair! Like to see them getting through chemo then!
take care all
@Shi Thanks! But ages til I actually start rads -- don't finish chemo til early Dec, then surgery, then recovery, then rads in Feb/Mar(?). But I like to plan ahead.
I’m from the September thread but was just looking at your comments below re menopause. I had a partial hysterectomy 9 years ago & started with menopausal symptoms a few years ago. I thought I was past that but having started chemo, the night sweats have come back with a vengeance. Until tonight, I had never heard of the magnet thing, but I have bought a cool pillow. It’s effectiveness is limited. It’s ok at the beginning of the night if you can stand the faint smell of rubber, but it does warm up during the night & gets a bit sticky. I’m always willing to try anything, but maybe you don’t need to spend too much on one - mine was from Boots by JML.
I did however try the tip of using 1/2 an effervescent vitamin c tablet before going to bed - just let it melt on your tongue. I didn’t have my first hot sweat till 4am which is a result for me. Also they’re great for helping with normal thrush, so results all round.
Best of luck with everything x
@RedRose Ouch. I hope that if any of your nails do come off, it's at least less painful, and that they grow back swiftly.
@Georgie Gee I'm taking note of Sally's retort, as I can't think of anything cleverer or more satisfying to say in response to such an unthinking question. I also enjoyed the Titty Gritty blog post that @Linda mentioned. (I guess one upside of having most of my friends and all of my family in the US: most of the time, my support network is weighing in by email, so they have the luxury of rereading before hitting send.)
How did your Herceptin injection go today? Are you feeling better about radiotherapy? I know I feel better about what lies ahead for me on the RT front after hearing from Shi and others.
@Sally You are amazing. I've been trying to work throughout, but docetaxel is kicking my arse, to use the native parlance. (Is "arse" okay to say on the forum? Or should I be asterisking it out? I truly don't know.) I am in awe that you only missed your chemo days! (And jealous!)
@Kip A p.s.: How's your (suspected) seroma? Is it going down?
@Kip Congratulations on your results! You must be thrilled. A bit startling to hear that chemotherapy can frazzle the lymph nodes, however... No one mentioned that this might happen before I started. Good luck with the radiotherapy planning -- it sounds like you will be done with RT just in time for Christmas, which is lovely. FYI, I've heard that your period might restart up to 12 months after finishing chemotherapy; after that point, it's very unlikely that it will restart again.
A magnet in your knickers???? The first thing I thought: another barricade to bedroom antics! A quick little bit of googling has me quite skeptical: https://www.healthline.com/health/menopause/magnets-for-menopause#does-it-actually-work
I have heard acupuncture can help with hot flushes, and meant to mention that side effect before my session on Tuesday at The Haven in London. I'll have to remember to mention it next time. (They offer a few sessions for free, so I'm trying it. Seems to help with my tingling hands and feet for a few days -- placebo effect, sensory distraction, acupuncture actually working? Who knows. Hot flushes would be a real test.)
Hi all, just thought I'd drop in to let you know I got the results of my ANC today and all the nodes were clear! Aparently I only had 4 nodes.. seems weird... but apparently the chemo frazzles them sometimes so thats all that was left. I now have a CT scan on Tuesday for planning the radiotherapy and then 3 weeks of radio to follow, starting about 2 weeks after. Also have to start Tamoxifen for 10 years!! Not looking forward to that but I'll do whatever it takes to beat this thing. Doctor said that I will in the menopause now and if I get any periods I have to let them know so that they can stop my ovaries from working. I also asked about future monitoring and she said I will be called for a mammogram on the 1 year anniversary of my first surgery (so May 2019) . I mentioned the fact that I was told my breast tissue was dense and shes said that Tamoxifen and chemo will have altered that but to mention it at mammogram and they may do an ultrasound!
The nurse mentioned hot sweats (as I am having some already) and has offered accupunture if they get too bad, also given leaflets for a magnet you wear in your knickers to help with menopause and a cool pillow thingy too! More bedtime reading for tonight.. anyone heard of these?
Ouch they look painful! I wonder if mine will do that as they have that ridge bit too. Not very useful tips from chemo unit though.