I didn’t have a bone scan btw.
@ktk Hmmm. No bone scan. My theory falls apart. I have half assumed that drug-induced menopause might be harder on the bones – or perhaps earlier menopause is the issue. Time to do some research!
Hmmm, its strange isn’t what we get told at different hospitals. I haven’t actually had any kind of lengthy discussion regarding hormone bit, all I know is I am pre-menopause (or was before chemo) and that I am ER+ 8/8 so will have to take hormones (they mentioned Tamoxofen). I did have a bone scan before chemo but not sure if thats the same kind of scan or not? I guess once I have had the next surgery and got all clear from that they may talk about it, not sure if that happens before or after rads? Its just one thing after another to get your head around isn’t it. I have wondered how they assess whether or not I am post or pre menopause now chemo has been done, as I have only had 1 period since beginning chemo so not sure what that means, have they stopped for good or just during chemo? I can’t begin to think about it all as now getting my mind ready for surgery, and actually getting a bit scared although I’ve already had one lot so shouldn’t be but…
Also had a lovely chat with my daughter last night and out of the blue she told me she worries about me and it makes her sad but she doesn’t tell me for fear of upsetting me. Well that set me off…I hate the fact the children are worrying but I know its normal. She said she wants everyting to be back how it used to be (cor me too I thought) and she hates seeing me ill. I tried to reassure her that I am feeling fine now but its hard when she knows I still have other treatments to go. I just hope the rads are straight forward and she can see I am coping. Just as I had got her smiling again… on the TV was a little girl who had lost her Mummy when she was 3 due to Breast Cancer… BANG… I could see my daughter deflate and look at me with fear. What on earth do you say? I did my best to reasssure her but crikey its hard. Its really deflated me to be honest too, went to bed worrying again. Just seems you can’t escape BC wherever you go, today a charity bag came through the door… yes for Breast Cancer! One of those down days I guess, but am picking myself up and carrying on… its all we can do isn’t it.
Take care all
Kip
xx
Hi Kip
I’ve just come out of a meeting with my oncologist and I asked the question about tamoxifen or letrozole. She said that as I was still menstruating when I began treatment I will have tamoxifen for an extended period of 10 years. Like you I have had just one period since starting and have gone full blown into sweats, aches and mood swings. And also (this falls into the TMI category)! vaginal dryness. Oh joy, oh bliss ?. She also said we are still treating me for a cure, tbh I hadn’t considered that they may not be ? I’m 55 this month, her2 + er+ 8/8 pr-
Jacq X
I’m another one waiting to find out about hormone therapy - I think I am 4/8 ER+, I remember I’m only moderately receptive. My menopausal status is a bit of a mystery as I had a Mirena coil in until just before surgery. I’ve had one period since then, but it’s not clear whether that was reaction to the coil coming out or what. I’m deffo having warmer moments though! I guess we’ll talk about all if that at my next oncologist appt at the end of the month. Am apprehensive about the effects of hormone therapy though, especially weight gain, I can do that on my own without any help!
Saw my GP today. She has signed me off for a month for post-chemo recovery, with the instruction that it’s no problem to extend if I need more time or radiotherapy is proving too onerous.
LJ
Hi all
Just catching up on the hormone therapy, calcium and wee messages!
I just realised I’ve also only had 1 period since starting chemo but mine were regular before I started so I suspect that’s why I’ve been told I’ll be going on to tamoxifen for 10 years. However, I spoke to a friend today and chemo put her into early menopause. It’s all very confusing. Kip, I would say just take things one day at a time and as you say the surgery is the next thing to concentrate on. I do understand you being nervous even though you’ve had surgery before. I’m feeling this way even though my surgery is some way off. I suppose I had no idea what to expect last time and this time I do. It’s daunting. I suppose it’s natural to have some anxiety before any surgery but I’m sure we’ll both be fine!! So sorry to hear your daughter has been worrying. It’s good she was able to talk to you though. I am extra sensitive to anything about cancer on tv, posters on bus stops and also have an issue with charity shops etc… seems to be so many fundraising ads at the moment which is great but in some ways I just don’t want to be reminded.
My Mum is on Letrozole and also has to take calcium tablets but she has arthritis and is 81 so I imagine she takes them to increase bone strength. I will ask next time I speak to her. I take Vitamin D because I’m mainly vegetarian but the nutritionist I saw told me I won’t be able to get a high enough dose from a shop and my Dr would have to prescribe it. Haven’t seen if they will or not yet.
Ktk - I’ve had an issue with the volume of wee I’m producing and how often I go! Not sure if it’s just because I’m drinking such a lot. I had prolapse surgery 6 years ago so no issues with leaking but I have found that having thought I’d finished I get up sometimes and more comes out! Just another wonderful thing about chemo that no one forewarned me of! JaqB good to hear the control should return at some point.
Take care everyone x
Hi ladies, thanks for the replies. All very interesting isn’t it… so looks like tamoxofen will be the way forward for me I guess. I’ve had sweats and mood swings but can’t tell if its hormones or chemo or both! And JacB… crikey I hadn’t thought about being treated for a cure or not… that’s worrying. They keep saying to me “Belts and Braces approach” so hopefully that’s good?? I must ask more questions next time… but I am always so glad to get out of the there I forget half of them… I’ll write a list for 8th November appt!
Kip
x
Hi everyone,
I start on Herceptin tomorrow, and T (docetaxol) on Friday…
I wish I didn’t even know the H word or the T word… just thinking, this time last year, most of us didn’t.
Had a little wobble this morning when I thought I saw some pus around the picc line entry point. The chemo unit had me come in to have it looked at, dressing changed and swabbed the white fluid? They said they didn’t think it looked like an infection, so I am going ahead with treatment as planned.
Didn’t help that on the way in to the hospital, someone backed their taxi into the side of my car. I got all the drivers details, took a photo of his car and mine, and even asked him to sign a statement to say it was his fault… He was really apologetic, but then tried to say he could ask a mate to fix it if I didn’t use my insurance company etc. No way!!! Not too much damage, but it will need fixing properly. Insurance company was amazing. They are arranging all the repairs and supplying a courtesy car. I have told them my ‘situation’, and that I was not sure I would be home when they pick up my car and bring the hire car.
Could have done without this, but in a funny sort of way, this just doesn’t matter; with what we are going through with treatment, which is essentially saving our lives, a broken car seems like a minor complication.
Goodnight everyone.
Georgie x
Oh dear Georgie Gee not what you needed is it. Glad you are getting the car sorted though and I guess as you say it pales into insignificance with everything else. Hope the PICC is all ok and that chemo goes ahead to plan.
CDC - I haven’t seen what box my ONC ticked, but as they keep saying “belts and braces” I am guessing its curative (or telling myself it is anyway)… they’ve not mentioned anything otherwise. All I know is its Grade 2, 55mm and had micromets in first 3 nodes and that I would “benefit” from chemo… whatever that means. My surgeon was pretty adamant she wasn’t expecting to find anything in the nodes they are removing, but that its preventative. I also haven’t been given a number in terms of reocurrence… nobody has mentioned anything about it, on the one hand I would like to know but on the other… not sure I could get it out of my head if it was high risk? I did read somewhere where somebody quite wisely said “we all have the same risk… 50:50… it either returns or it doesn’t” which I guess is quite right. Tingly is still tingly… although not quite so bad, or I have just got used to it, its just sort of numb and then every so often I get pins and needles feeling in hand and up arm but it goes in a few seconds. It doesn’t affect me doing anything so if it stays that way I can put up with it I guess. Larry tongue is all but gone and taste buds back which is fabulous but not helping with the attempt to eat healthier as I now want to eat everying I couldnt taste before!
Its good to hear you haven’t suffered with sickness on the Paxitaxel, thats a bonus, will you get the red face on every one? The tiredness still continues for me, although I do feel pretty good otherwise and am attacking the hula hoop every morning again…my jeans were getting tight yesterday so I need to do something!!
My OH has a friend at work who’s wife has just been diagnosed with BC (the third lady in his office since my diagnosis!) and I couldn’t stop thinking about her last night. She had her first appointment yesterday where she got the dreaded news and is now waiting for an MRI scan before her treatment can be planned, she is still waiting to find out if she is HER2 aswell, it took me right back to April and that awful day…its so sad to think every day somewhere people are getting told they have cancer…my hubby talked to her OH and told him its the worst time at the beginning… but I remember not believing it when people told me that so I could only imagine how she was feeling. Made me feel sick to the stomach to think about.
Well at the least the sun is shining here, washing is out and chocolate muffins made…more calories for me to eat… take care all and good luck for chemo tomorrow.
Kip
x
Gosh, loads of posts for me to read! I’ve already had surgery which removed the 12mm grade 3 lump with clear margins and no node involvement - presumably surgery was pre-chemo because it was so small! But that’s supposition. Chemo was recommended because of the HER2 result.
Just had a good appointment with Radiotherapy oncologist. She was very understanding about my holiday and I will start treatment afterwards which has made me very happy.
@georgie-gee - things I’ve found about T which might be useful for you… Pain prevention medication is better than painkiller, I’ve had Naproxen, something similar might be good for you. I’ve also been taking an anti-histamine with Loradatine as the active ingredient which apparently helps with bone pain from Herceptin and the injections. Sleeping with a pillow under my knees or between my knees has really helped with supporting the joints and easing them. Even moving around at the speed of a snail helps! As always warm baths help too. I’ve found plain water and raw vegetables leave me with bad indigestion, as if they’re just sat there! A stuffy nose has kicked in from about day seven which I believe is Herceptin related, but worth being aware of.
LJ
Hi all
Such informative posts. Thank you.
LJ I think Grade 3 means it’s faster growing so even with a smaller tumour they would want to remove it as soon as possible. So glad you’re going to have your holiday before radiotherapy starts. Great your oncologist was understanding.
Reddi Good point about the immediate reconstruction before radiotherapy. At one point I was definitely going to have radiotherapy but that was before they decided I needed a mastectomy. Now I’ve no idea!! Lots of questions next time I see the Proff. Kip it’s a hard one to know whether to find out about risk of recurrence but initially it would have helped to decide to go for a single or double mastectomy. Now my cousin has been diagnosed I’m pretty sure I’ll go for a double now.
Interesting to read about the tamoxifen and zoladex because I’ve been told I’ll have both! So confused!
I’m getting concerned that my chemo might be cancelled tomorrow as the skin has started peeling off my toes and balls of my feet. I’ve got no pain whatsoever so I’m hoping it’s just a delayed result of the Docetaxel and Hand/Foot syndrome and not related to Paclitaxel. Don’t want a delay however small as I’m desperate to move on to the next stage of treatment!
Hi CDC,
I’ve had the peeling on paclitaxel but only on my feet which I moisurise 3/4 times a day. It’s not stopped my chemo at all. I do have a stinking cold though but hopefully my bloods will be ok tomorrow to go ahead. I’m not ill, just very , very snotty. No temperature at all, I’ve been checking regularly.
Had a copy of an oncology letter today which says I’m for consideration of two studies, PALLAS and MONARCH E. so it’ll be one of then I’m for but I’ll find out more at next appointment.
HI,
Re the E45 I find it dries my feet out a bit more. I use vasaline intensive care or a special foot cream, nice a greasy called Palmers cocoa butter formula which helps.
Ooh I typoed Vaseline. …it’s making my eye twitch.
Wow so much information to take in, thanks Reddi and everyone else. So perhaps I will find out my recoccurence numbers when they decide upon which hormones. I know I am 8/8 ER+ but nobody mentioned progestrerone rating?? I guess that follows that they just focus on the oestrogen. I only ever get told I have the “most common” form of BC and the nurse always says “that’s really good” as if that makes me feel any better!! I’m trying not to think too much about reoccurence and just get through the next op and then the Rads but it keeps popping into my head so not sure if I could deal with knowing the chances?? I’m a bit of an ostrich really!
Good luck for chemo girls today… hope they all go ahead regardless of colds and peeling feet. CDC I use Flexitol on my feets, its a cream which diabetics use but you buy it over the counter and it contains urea and is fab for dry cracked feet. I suffer terribly with cracked feet and this really keeps it at bay… doesn’t smell that great though!
Kip
x
So Had paclitaxel number 11 today. In and out very quickly because I didn’t cold cap this week as I have a horrible sinus headache due to my cold and couldn’t face it.
Good evening lovely Ladies,
Had my first herceptin yesterday.
The nurse kept telling me there are no side effects, but they were keeping me for 6 hours 'in case… ’
When I got home I felt really sick, had a sandwich, which I forced down, and went to bed. Was very nauseous and had a temp as well, plus diarrhoea so stayed there until this morning.
A friend came to me to pick me up for T chemo round 1, and said that I seemed really breathless again.
Got to hospital, but they were not happy with how I seemed. Onc decided I might have a chest infection… so no chemo for me today. Ended up with 2 litres of fluid, and oral antibiotics to go home with. Was given the choice to stay in, which I declined politely! Had to promise to go to A and E if I wasn’t feeling any better over the weekend.
Love to all
Georgie xx
Oh dear Georgie, fingers crossed you perk up and avoid that hospital visit… take it easy…
Kip
xx
Big hugs Georgie Kxxxx
Pealing and red feet and hands, swollen ankles means the oncologist has said yet again that I’m not fit for my last chemo session. He believes they are getting worse not better ?. He has decided that I’m to have a 2 week break from now so with the 1 week break I have already had that makes a 3 week break. He believes my body is sensitive to the T. I don’t know ?♀️ what to think as kind of in limbo. I don’t want permanent damage which he has warned could happen but I want all this over with. Unfortunately with my diagnosis it will never be. Just sick of being sick now. He says I need some quality of life and won’t do the chemo till I’m 100% fit. Xx