Jamal is so cute .My love to him.
I am new to this group.
Had bone met from primary invasive ductal cancer diagnosed in 2014. I am on hormone therapy and zoledronic acid for 9 months. I have a loss of appetite and no taste, Is this normal side effect ? Can anything improve this becuse I am loosing weight.
Hi Corey lovely to hear from you again, hope you are OK. What a lovely little fellow - thank you for sharing.
Hugs B xx
hi everyone sorry i haven't posted for a long time just been busy with things on the farm and thought perhaps you would like to see this little chap two weeks old now. he is gorgeous,named him jamal. a happy mother day everyone tomrrowxx
Hope your scan results are good, will think about you during the waiting period. I went in early for a bone scan on Thursday. Discovered on Wednesday that i could have had a hospital parking permit for the past year. Must read the small print. Amazing sunshine today, did loads of washing (including my daughter's)
hugs to all B xx
Hi Ladies, Yes it's been quiet! It is warm here today, but the sun is hiding! The snow is almost gone. I really wish the warm days would stay. Carolyn hope that cold disappears and you get good scan results. Hoping your appointment is early April to discuss your teeth. Pippin, I don't like beer but a wine sounds good. Waving at you Barton! I have a scan on Tues. results on Thurs.!! FF
Hi Carolyn and everyone else
No such luck with the bunjee jumping, strictly not allowed to do any sports! Sat at home on pc, my hip even hurts sitting down. Thinking about painkillers or a beer. I think I will go for the beer.
Weird how with stage 4 we seem to break the rules. I would never drink on my own but do so now.
Everyone is kind to me and that somehow sometimes gets my goat then I feel bad about it.
Hello Carolyn, sorry to hear you have a cold. How are you feeling today? Better, I hope. The soup sounds nice - haven't seen it though.I didn't realise you had a hospital visit this week - I hope all was well. I expect you told me, but chemo brain (or age!), is definitely kicking in!
The round yellow ball in the sky has arrived! And it is so warm here in Devon today - it's been beautiful!
It is so quiet on the Forum lately - where is everyone? I only hope it's so quiet because everyone is feeling well, and not the reverse.
Hugs to all. Barton.x
Bit quiet here.
I understand the reluctance to start painkillers. My hip doesn't bother me much until I put any weight on it. I guess I probably would walk better if I were doped up but so far I have valued a clear head over a good gait. It's over a month now since rads and my mobility is improving now.
Does anyone have any experience of hip replacement? Like I wondered how long before you get home, how long before walking unaided, how long before driving and generally was it worth it?
I agree it's a worry about the menopause as none of us know when we would naturally go into it therefore it's a bit of an assumption that at 50 you will be! After my primary treatment of zoladex for 2 years and hormone treatment my oncologist was sure I would be in the menopause - this was at 41, so a bit of a radical assumption! Of course when I stopped zoladex my periods came back and I think that's what caused my secondaries to develop sooner than they would have done. Having had chemo when I was dx with secondaries I made sure I was post menopausal by having my ovaries ablated (surgery ie the general anaesthetic wasn't an option due to heart problems). It may be worth you exploring this if you feel you want to be definite or ask to continue on zoladex if you are ok with carrying on, I don't think they can stop you.
As to Denosumab being 8 weekly it seems to vary between hospitals/consultants - as do so many of our treatments! I'm happy with the 6 weekly schedule I'm on, mainly moved to as I'm on 3 weekly other treatments so it fits in with those. I thought at first, when I went from 4 weekly to 6 weekly, I would feel more achey as I was convinced I used to ache just before my injection, but I've not had any real changes to my achey-ness at all - still ache a lot! Maybe as to move to 6 weekly and see how that suits you? Also you have said on some other posts how you are struggling at times with the pain, you could mention this as well? I hope you're not worried about it as you have had a recent scan but if it's affecting you maybe there's a pain killer you could take if it's particularly bad, or even have a shot of rads if it's always in one place? Anyway, take care.
Doodles - quick note for you - the lingo is very weird at first but you will get used to all of our abbreviations, but, again, ask us anything, we are happy to explain and we don't bite - promise!
Sometimes this thread is really busy, sometimes it's a bit quieter - it just depends if some newly diagnosed ladies come on and share their fears - which we try to help with - or sometimes it's just because we're having a natter! Either way, just join in as much or as little as you want, it really doesn't matter if you just find reading the forum is helpful and you don't want or need to post. I think a lot of us read every day but quite a few, including me at times, don't add anything as they feel they can't add to what has already been said.
Anyway onto your questions. You can ask as little or as much from your oncologist as you want, you are entitled to see, and get copies, of all scans and reports. It took me a while to eventually ask some probing questions and now there's no stopping me!
What you will want to know is what type of SBC you have. Is it hormone positive (or negative) and is it HER2 positive (or negative). This will determine your treatment. You might be put on a course of chemo, which is likely to push you into the menopause, or hormone treatment which will also affect your menopausal state, including the possibility of zoladex which puts you into an induced menopausal state, which can be reversed once zoladex is stopped. You are most likely to be on a bone strengthening treatment as well, I think all of us are and it would be unusual if you weren't. This is now tends to be a 4 weekly injection called Denosumab, which sometimes gets changed to 6 weekly after a time. You are normally scanned after 3-4 months after starting a new treatment to see how it's working. This often isn't a bone scan as nuclear medicine isn't given that often but CT scans or MRI scans also pick up changes to bones and will indicate if they are healing.
Hope that helps and I'm sure some other ladies will add their views as well if there's other questions they have asked.
Good luck with your appointment and either take someone with you to take notes, or take them yourself, there will be a lot of info to take in which, in my case, always produces more questions, usually once I'm out of the room!
im on denosumab and my dentist sent me to the hospital for a jaw X-ray, at the start of my treatment, he said he will be doing them regularly to keep an eye on my jaw!
Sometimes I think I will glow the amount of X-rays and scans I've had!!
It may be worth asking your dentist to refer you to hospital dentist to get X-ray done.
Weather here a bit windy and damp too, shame as hoping to complete our poly tunnel! Next calm day we will be out there, hoping no sudden gusts though or we could find ourselves down your way when we put the plastic cover on!
Hugs and good wishes to all.
Bernie, I would ask the doctor how she knows it is a cyst and not a tumor? I can tell you at my last scan of my lungs there were two "things" they called new nodules, but the oncologist said that neither her or the radiologist thought they were cancer bc the make up of them was different. So what I'm thinking about for you is maybe a cyst looks different on a scan than a tumor. This is just a guess on my part. I'm sorry you have had so many complications. Does pancreatitis run in your family? I think it can be genetic if I remember correctly. Hugs and best wishes! FF
Bernie I'm glad to hear letrozole and denosumab are working for you after all the other stuff you've been through
Carolyn how are your teeth? Are you likely to have them fixed soon so you can return to denosumab? I am going to the dentist next week, just for a check up, my teeth are OK. My normal dentist is on maternity leave so, as I'm having a bone scan the day before, I thought I'd better ring and check her replacement isn't pregnant as well. However he's called Justin so not much chance of that.
love to all B xx
Maldives and PMOL, sorry to hear about the pain problems..i hope yo get some relief soon.
PMOL...thanks for sgharing with us abot the crying...its nice to know i am not alone. I want to cry for so many reasons, most of them you mentioned and even when i dont it is just bubbling under the surface. How lovely of your youngest to be so brave. I tell my daughter the truth (she's grown up but still my baby) about things but try not to burden her with the everyday c**p. I know none of this is my falt but it still doesnt stop me feeling guilty about the way it affects and changes her life.
rest assured you can cry all you like with s on here, someone will aways be there with a shoulder. xx
Hi girls - thanks for your support... it's been a much better week but keep waking up in the middle of the night (4am today). I've got my 'bag of goodies' at all times with me so that if any major pain happens then can hit it straight away. Spoke with the Macmillan nurse and said that she was happy with what Inwas doing and to have paracetamol on a regular basis (4xday).
Still, think that at any point through our treatments when we have to change drugs its a scary and anxious time... now that aI've had at least a doze of the regular ones, hope that the flaring would calm down and things settle for a while, specially for May 😉
Maldives sorry about your mouth🙁 Haven't had any problems (yet) with mouth ulcers but if I hear of anything i'll let you know... cinema sounds ace!!! It's on our must see list this month so will probably do it soon.
My girls are ace 😍 (Not that i'm biased!) the eldest (S) is having more trouble speaking about 'it' but she shows her concerns about the situation in different ways, probably helping out moreo and hugs and if I'm in bed coming and chatting away. The youngest (F) has asked the most mature, scary and thought provoking question. They all deal in different ways and our motto has been to be honest with them.
my original dx was when I was 35... had a non-cancerour tumour out when i was 24 so when ai found it just wanted it out... the rest as tthey say it's history...
right... feeling a bit sleepy.... xxxxxxxx ❤️❤️❤️❤️❤️
Choc ices are the way forward!!.
My mouth and tongue have been really sore after cycle 4 but the taste and texture of a choc ice is brill!!
Thanks for the advice, I will give it a go. Start my third cycle tomorrow. It goes so quickly. I cant belive Ive done 6 weeks already.
have a good weekend