OMG that is fab CDC... daunting I can imagine but very important and like you say there will be others in the same boat.. I can just imagine you all having a little siesta half way through. Sorry to hear the neuropathy is still being a pain (literally)... I imagined I would finish chemo and bounce back... seems it doesn't work that way. I did some searching and reading on this site yesterday regarding Tamoxifen and its side effects and there are so many women all having the same aches and pains as me and all on Tamoxifen too, it has to be that and the induced menopause that does it. Apparently you need an amount of oestrogen for your joints/muscles and when they suppress it, you can suffer the aches and pains. Not sure how you address it though, some ONCs seem to agree with it some just say its not related. A friend told me that she knows of ladies who suffered this way and it settled after a few months, so I am going to try to continue with the Tamoxifen for a while (haven't even had it a month yet) and also give the chemo and rads time to leave the system and then address it. Apart from the aches and pains I feel fine really, I'm sleeping better, still waking up like a 150 year old but at least getting some sleep. I think the Epsom salts do help a bit, they certainly relax me and get me ready for bed if nothing else. I am also taking Magnesium, Zinc and Vit D to see if that helps, and somebody suggested glucosamine but I need to get these checked to see if I can take them with Rads. The chap doing mine yesterday didn't know but is finding out for me. So far Rads have been easy, no pain or soreness yet but expect that builds up. Its just so time consuming going back and forth to the hospital and I haven't even done Xmas shopping yet.. not sure when I can fit that in eeek!
Let us know how the conference goes...
How did it go today Kip? So sorry you’re still so achey. Do you think the Epsom Salts help at all? I was so desperately tired yesterday and for some bizarre reason my neuropathy is back and making walking for any distance more of a challenge. I think I’d underestimated how much I’d still be affected with SEs now my chemo has stopped.Was going to try and take it easy tomorrow but got invited Cheryl Cruwys co-founder of Breast Density Matters to take part in the Britain Against Cancer conference tomorrow. Gulp! Feeling daunted but excited! There will be other people going through treatment there so I presume the organisers will understand if we all end up having to sit down and have a nap!
How is eveyrone doong at the moment? Thinking of you all xxx
Ha ha Shi, perhaps I can enlist the prostate pals too! Got a full week of Rads this week, first one at 2.45pm today... still feeling ok with it, just these aching joints... omg... don't think I can do a good dance to Push It.. more like... "Achy Brakey" by Billy Ray Cyrus!
Unfortunately no dancers at my Rads so far... only the 3 "prostrate pals" ( my new name for them as they love to discuss their prostrates loudly for everyone to hear).. maybe I'll meet some new ones tomorrow? I had to keep myself busy with a jigsaw again instead.
Shi - no potential boogiers at my RT session today, infact quite a dull lot to be honest... not a word from anyone. Just two old guys discussing their prostrates! Maybe tomorrow...
Well done RedRose, 4 done! My first one today, was fine, felt a bit weird just laying there, kept expecting some rays of light or something! I didn't even wear a bra, only having the one very flat boob left its not really noticeable for me so I just wore a very soft vest top. Do you feel sore yet? I completely forgot to cream before I left hospital, I had it in my bag but was in a hurry to leave. Must remember tomorrow, oh and tonight too.
Reddi - goodness me what a day you had! Glad your eyes are improving. I had terrrible dry watery eyes after chemo (and throughout the last sessions too actually). They got really sore from all the watering. Funnily enough I never really noticed it stopping and only just realised that it has over the last week or so. I think also due to eyelashes returning? Can't believe you had to turn around and go back to hospital.. but it sounds like you have a good plan in place for moving forward, and if you can get it done before Christmas you can sit back and recover and be pampered (oh and eat lots!!).
Shi - thanks for the juke box.. I'm going to check out the locals at the Radiotherapy centre and see if any potential boogiers there!
@cdc Just saw your note in the surgery thread about your friend who's just been diagnosed. It just never stops. Feels like the only thing to do sometimes is scream in aggravation, sadness, and camaraderie.
Well, more news from me: I've got a new surgeon, one who is an oncoplastic surgeon, and she is recommending nipple-sparing lumpectomy on the left and nipple-sparing mastectomy on the right with immediate reconstruction using an implant (the only option for nipple-sparing surgery that makes sense for me, given the need to do it relatively quickly after completing neoadjuvant chemotherapy). It's highly likely I won't need radiotherapy on the right side and she feels a breast-conserving surgery would leave me saddled with the worst of all options for more than a year -- it would require rads on that side and leave me with a super strange-shaped mound of tissue to deal with for more than a year. She's also suggesting surgery on 13 Dec, if my immune system is recovered enough from chemo.
I had been somewhat persuaded that using my own tissue would be better than using an implant, but my mom has implants from having about half her breast tissue removed for fibrocystic disease when she was in her twenties, so I'm also not opposed to the implant option. Having seen a bunch of photos, and talked through pros and cons, including risks, I feel happy with this approach. It will also ensure I have good donor sites intact should I need mastectomy of my left breast later on, or more surgery on the right breast, say, if the reconstruction fails or I have a recurrence.
What an eventful day at the hospital! (And on our 10th wedding annivesary!)
Oh Sally that will be a long wait for Rads won't it. Fingers crossed everything gets moving quickly. I hadn't thought about what happens when the eyelashes get longer, mine are coming through but still quite short so not a problem at the moment. There's always something to deal with isn't there. Sorry to hear you are still suffering with the hair loss, do you think it could be because the folicles were weakened by the chemo anyway, perhaps once they are gone they will start re-growing again? Once they start they come on pretty quickly. Thats just anothing thing you could do without.
One more day until I start Rads... actually quite nervous, not sure why as I know it won't hurt and is over quickly...its just being back at hospital again I think.
Today my legs aren't feeling quite so achy (the epsom bath I think) but my back is still stiff across the bottom and round the hips.
Shi- I'll make sure the tank is fully stocked and ready to rock!
Glad No 2 was ok LJ tho the journey doesnt sojnd fhn! I start Thursday and find my arm gets stiff if j dont regularly exercise it!
RT number 2 complete! Only 18 to go! Journey was rubbish once again, hour and three-quarters fro a 35 mile trip. We got parked and checked in just in time. I'd barely rested my behind in the seat and they called me. We left the car park 25 mins after arriving!
I've got my post surgery exercise sheet back out - I've got really good movement in my shoulders but I think if I'm not careful the RT 'position' will see them stiffening up and I don't want that.
How's everyine else finding it? Kip - is it tomorrow you start, or Thursday?
Oh LJ what a nightamre... Christmas Eve really!!! Surely they must change that... thats the last place you want to be on Christmas Eve. When they were booking my RT they did mentioned it may fall over christmas and I was beginning to think I may be going up there in the middle of cooking a turkey!
Reddi - thanks for your kinds words. xxxx
@LJ You've gotta be kidding. I'm sure they can find another appointment very soon after (or before!). They talk about the psychosocial aspects of managing this essentially chronic disease; surely the oncologist can appreciate that -- for you -- having an appointment on that day wouldn't be supportive and rearrange it. (Not all families celebrate Christmas, so I can understand the desire to fill every slot available, but they probably expect that some portion of the people with an appointment scheduled for that day will want to rebook.)
@Kip & @cdc & @Red Rose Your remembrances of your fathers, and your loss of them, have been very moving. I've been left at a loss for words in reply to them. Thank you for sharing them -- especially as doing so might churn up fears and worries about your own care and treatment.
Hello ladies, sorry I've been a bit quiet recently, but been feeling a bit cheesed off and decided I didn't need to offload it onto you all.
Anyway, Herceptin number 5 was yesterday and today was RT number 1. The RT was fine, the journey in less so, but it's crossed off, only 19 to go.
Someone somewhere is having a laugh at my expense. I've been waiting for an oncologist appointment to come through as she wants to talk to me about bisphosphonates - well it came through for Christmas Eve! Can you believe it?!
Thanks CDC, yes a big shock but somehow being a child you just get on with it, the adults almost do the grieving for you, its was hard seeing my Mum upset for a very long time. My dad died in November and has just had the 39 year anniversary.. that was hard.. he has now been gone longer than he lived... unfair. My scariest thing was my son was experiencing strange feelings and heartbeats when he was about 9 or 10 and I really had to push it to get him looked at. Thankfully they were understanding given the circumstances and we where referred to the Evalina Hopsital in London for tests. They have found that he has a wandering atrial pacemaker, which means his heart beats in a different pattern but is not life threatening.. hes just unusual! So glad they took everything seriously though, I did heavily push the facts about my Dad though.
Firstly a big whoop whoop for you CDC for completing chemo, it wasnt the way yoh envisaged finishing i am sure but you have done it! Now fingera crossed the SEs arw kind and you can putnthat nastiness behind you. It was so sad to read about your dad too, but so glad you have nice memories too. It seems we have a lot more in common than just BC for I too lost my Dad. Sadly mine died when i was 9 years old. He died unexpectedly in his sleep, went to bed and never woke up, just 38 years old. He had been having chest pajns and dizziness for quite some time but unfortunately back in the 70s not a lot was done, no ECG or anythjng and he was repeated ly sent away with no tests and told "its your nerves". After he died they suspected he had an unusual heartbeat and nowadays would have been fitted with a pacemaker and been fine! So the medical profession let another dad down!
Morning red rose, firstly may i say well done for sticking to your guns and asking all your questions.. good for you!! Bloody annoying that he didnt\wouldnt\couldnt answer some... the frustation at wanting answers and not gettjng any is total nightmare. Good yo hear you are getting the dexa scan and blood tests tho. I didnt know about your dad and send you an extra big hug for all you are dealing with and fully understand your Rad fears.. i start on Thursday and am getting jittery. Given whats happened to your dads eyesight i would have hoped your onc would havd been more sympathetic... Thats so wrong. Keep on asking for answers, you are well within your rights to question!
@Kip From what I understand, for (most) pre- and peri-menopausal women with ER+ breast cancer, they currently suggest either Tamoxifen for 5 years followed by an AI (anastrozole, letrozole, or exemestane) for 5 years or Tamoxifen for 10 years -- 10 years total. It sounds as though the switch to AIs at 5 years is often based on how you're tolerating the side effects of Tamoxifen; if you're tolerating Tamoxifen, they keep you on it. I wish I were getting Tamoxifen! Instead, they'll be putting me into forced menopause with Zoladex -- I think because of history of pulmonary embolism (SE of blood clots for Tamoxifen) and/or my risk of recurrence. Need to double-check.
In some other thread, I've seen strong praise for a product called R1R2 that in theory can be got on prescription via your GP. It pops up in a few of the BCC RT threads, e.g., here, here, and here. It sounds as though Aveeno and ilk are just as good for most people -- and @ktk provides great evidence of that.
@ktk Another thanks for RT reports! I've been taking notes so that I can remember all the good advice when it's my turn on the sunbed.
@cdc Hope your chemo today went smoothly. Was this officially your last one?
@Sally That's so frustrating about the trial. I hope you're able to quickly figure out a good, solid plan with your team -- trial or not.
Eye may be improving -- it's hard to tell as one of the drops *gives* me blurry vision and the hourly one stings. The ophthalmologist had warned me of this, but I wasn't expecting blurry vision for hours and hours. Less than ideal for doing work.
KTK - thanks for the advice regarding Rads, I'll be out at the weekend stocking up on my creams! Thanks for explaining about the biosphates stuff. I am pre-menopausal so haven't been told about it then.
CDC - interestingly I didn't have a scan/blood test or anythign to find out if I am pre or post they just asked me if I was having periods before chemo and I was (I have only had one since though) and they just said "you are pre-menopausal"... not exactly scientific is it. I wonder what happens further down the line, do they then check to see if you are now post meno... or just keep taking Tamoxifen? More puzzles to work out I think. Its good news that you are having the last chemo adn to be finishing earlier than expected. Hopefully you'll get to feel better for Christmas and can start the new year thinking straight about the operation?
Sally - sorry to hear you can't take part in the trial, but good that they are looking at other ones for you.
Reddi - I cannot imagine waking every hour to apply drops... thats worse than having a new born baby! Hope the eye is improving today?
I'm still feeling stiff and achy although possibly a little bit less? I have been walking 3 miles an evening to see if that helps and taking the bananas, zinc, magnesium and cod liver oil and sitting with a heating pad on my hips which feels lovely! Also managed 10 minutes hoola hooping today too just to get the joints moving.. I'll try anything.
My poor OH has had to participate in a "Cancer Awareness" course at work yesterday (not sure why they are doing it) and he was part of a phone conference where people from the Civil Service were chatting about experiences of cancer.. He came home and said everything was fine and quite intersting to hear others talk about their chemo etc until a lady came on the line and said she had had breast cancer and then had secondaries... poor love said he had to hang up as couldn't bring himself to listen to it. Can't believe they picked him to participate at this time! However he now believes chemo brain is a thing! Said several people talked about it and how long chemo takes to get over... not just me then!
Anyway ladies, have a lovely day
When I had to do through the night a few years ago, I set an alarm to go off every hour. It SUCKED. My OH and I were not pleasant people.
Reddi you poor thing, that sounds like a nightmare, for a mintue i was wondering how you do it every hour through the night! Hope that clears up soon. Xx
The different approaches to bisphosphonates are very confusing. It seems that even though there are national guidelines, each trust/hospital has a fair bit of leeway in deciding how to provide them. Or maybe some of the decision of infusion vs tablet is based on age?
Have spent my Thanksgiving morning at hospital. I'd been getting some blurry vision and discomfort since Sunday evening, and the oncologist had asked me to ring if that happened, so that they could arrange for an ophthalmologist to check my eye with respect to the shingles. There were no ophthalmology appointments open, and thus I was ushered to A&E and the urgent eye clinic. Yesterday I managed to see the triage nurse but wasn't able to see the doctor before they closed for the day. Good news: I don't have shingles in my right eye. Bad news: I have uveitis (inflammation of the middle eye) and increased eye pressure. In my pharmacy goodie bag: another week of 5x/day antivirals and 4 different eye drops, one of which has to be dispensed once an hour for the first 2 days, and then once every 2 hours for the following 5 days. (The others are 2 times per day -- easy as pie.) Just glad i don't have to do the hourly drop once an hour including overnight -- I had a corneal ulcer once that required that regimen, and the sleep deprivation was worse than chemo. The inflammation might be related to immune suppression, the HER2 drugs, or my contact lenses, though they don't think it's the last as I haven't worn my lenses in a week and a half. On top of it all, I do indeed have an unrelated sty on that eyelid. The chemo, it gives and gives! And my body is getting tired of it. Hurrah that I don't have any more cycles!
KTK - how did you find the Rads? I am starting next week. Any side effects, which moisturisers did you use?
Just curious - what are all the infusions, jabs for? I've never heard of them, should I be expecting some?