Hi ktk. I have just finished rads and must say I am glad its over. Have onc app on 14/12 and he has prescribed ibandronic acid/bondorat but havnt started taking them yet. Hows yours? Val
Hi Val. Are you taking the tablets daily? I have an infusion every six months, just to remind me of the joys of chemo ?. I also have Adcal, calcium and vitamin D tablets to take. Very achy today but I’ve just had a nice bath which has helped. Kx
Hi ktk,
I’m meant to be having the zometa infusions but haven’t had any yet. Don’t even know where I’m having it cos I was referred for a drug trial and was meant to have it at Guys but my participation in the drug trial is in doubt as a possible si de effect is dvt and as I’ve had one before they may not be able to lete take part, which will mean referring me back locally for it.
In the meantime, now 5 weeks after chemo finished and I’m losing hair like nobody’s business. All since I’ve started the letrozole.
Hi Sally, thanks for your reply. I think I read somewhere that they need to start the treatment within six months of diagnosis. I was outside this timeframe, and am not sure it is possible to meet that deadline!!! Keep me updated! Kxx
Really? I was diagnosed in January and that was delayed due to hospital errors so I’m well outside that.
Hi Ladies,
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?
Kip
x
Hi ktk. Yes Im on a daily tablet for 4 years. I havnt started it yet as having dental treatment for bone density in my jaw. The iabondric acid can cause jaw necrosis so getting things sorted (hopefully) first. No one mentioned 6monthly infusions or vit d. Will ask onc about it. Hope you are feeling less achy today.
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
Hi Kip, rads have been a walk in the park compared to chemo. I have a bit of an itchy boob but have taken some Piriton for that. I use Doublebase and E45 cream and Aveno in the shower. Last session tomorrow ???
The bisphosphonates are to increase bone density so are given to post menopausal women. They increase calcium uptake so the Adcal tabs help that. The worst SE is osteonecrosis of the jaw, which is why you have to have any dental work done before you start. I felt a bit achy yesterday, as if I had flu, but am fine today! Kxxx
So I had a call today to tell me that because of the DVT I can’t take part in the MonarchE trial. I then had another call to see another oncologist to see if there are any other trials I can do and also discuss my options regarding radiotherapy which I was told previously I couldn’t have again, it seems I may end up having it again.
In the meantime definite scalp and baldness now coming , 5 weeks after finishing chemo.
cdc I didn’t have a scan or anything. Bisphosphonate was part of my original plan as I am post menopause!! Kx
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
Evening ladies. Been to oncologist today and a couple of bit to update you all on. Been having a quick read of the thread and some of it ties in to previous comments. What I am doing for nail is what they would do and can’t recommend anything different. I am currently on zoledex to suppress my ovaries during chemo and radiation treatments and have my last in December as I was warned that the FEC-T could put me into early menopause. I therefore requested a blood test at oncologist which he looked gone out at me for. As I explained to him who was consulting, he can’t just sign me off from oncology because I need answers to a few thing first. 1st. Have I got into early menopause? Am I pre or post as the symptoms are ones that chemo masks as they are similar. 2nd. Again I requested a dexa scan for bone density. This is because, chemo, radiation and ovary suppression (zoledex) all cause increased risks of osteoporosis/bone thinning. And as early menopause does too, I am at very high risk in my opinion. 3rd as he is doing the blood tests for hormones, I asked him to request the cancer markers for both breast and ovarian cancer too. He looked at me shocked. As you know I am BRCA1 and I’m not taking the chance of it popping up, I would rather know if something is brewing now, which I hope not ?? as having just finished chemo and starting rads on Monday. So blood tests will be a month ish after last zoledex injection and dexa scan appointment will be in the post. I asked him about my risk rate being BRCA1 and he could not give me a definitive answer and just referred me to the genes book but as I said to him they are lifetime risk rates and guess what I have already got it so what’s the chance of it again breast wise or ovaries? He wasn’t sure so will be looking on royal marsdens website for some answers. Also told him my fears re radiation treatment as it’s over my heart, and asked if they do a follow up echocardiogram afterward to see if any damage caused through chemo/radiation. I don’t think I have told you all think but my dad had nasopharyngeal cancer and a brain tumor, when receiving radiation treatments the mask was not right therefore his optic nerves received radiation, I won’t go into to much detail as I and others are still to receive rads, but in a nutshell, he gradually lost sight in both eyes. Oncologist answer to me was… statistically that’s very rare and they know what they are doing. ? to which my answer was, yes but it happened to my dad and statiscally I should have cancer at my age and it be triple neg! So all in all my head is spinning and insomnia is back so I don’t think I shall sleep much. Sorry for ranting ladies. Goodnight all xx
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 didntwouldntcouldnt 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!
Take care
Kip
Hi Reddi, thanks for hormone info…xxx
Thanks Kip, my dad passed away a few years ago but what he went through with his cancer and it is obviously at the fore front of my mind, while I am fighting it as it’s my experience of cancer. 9 years he fought, but loosing his sight majorly effected him mentally and physically.
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!
Kip:smileysad:
Xx
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.
Kip
x
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?!
LJ
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