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
Hi Maldives, sorry your mouth is so sore...sore mouth's are the pits! Arent they.
do you rinse your mouth after every morsel or drink? I think that this is supposed to work to stop bacteria from multiplying and worsening the soreness...but im not positive ..anyway its supposed to helpxx
i was having three monthly mri's on cape, now they are every 9 weeks, eg after three cycles.
oh, and apparently Biotene mouth wash is supposed to be good. For sore mouths, FF recommended a couple of things...one was baby teething gel, which makes good sense too!
Immune Therapy Trials in Southampton.
Hi Ladies have any of you heard of these trials or are you taking part in them? This is the same treatment they are doing in gemany. I was just interested in it?????
thank you so much for your supportive replies. I am feeling much better this week although I have had a rough day today. Its where Ive been so busy. I managed to go into work for a few hours Tues & Wed. luckily its my business so I can do what I want. lucky me. It was nice to feel normal again for a few hours.
PMOL I am sorry you have had such a bum time lately too. Im awake most nights, most of my posts are done in the middle of the night.
Dont fight the painkillers, I did for the first two years until a hospital visit due to pain led an onc talking to me very directly. She asked what I was worried about by taking them and I replied "I dont want to get addicted to them" she laughed and said "I think thats the least of your problems, you need to take them if you want to get your life back, when your in pain they work on the pain. The people who get addicted are not in pain so thier body needs the drug" It made sense so I started taking oxycoden slow release twice a day.
It did give me my life back, without them I could not walk or function at all. If you have been diognosed with stage 4 you can get a pallative pain nurse out to help you manage the pain. Mine is great, she monitors me on the hospital website and know all that is going on. again I did not want to contact her as I thought they dealt with people at the end of thier life. WRONG - apparently as so many of us are responding so well to the drugs, thier job has become more of a support and pain management for us long termers. I really hope you can get through your worry and take the painkillers so you are not in so much pain. I dont know how I would be with young childern, its bad enough with my grandchildren. Your daughter sounds so strong for you, its amazing how they can take on a roll as support when you needed it most.
Moijan - My mouth is really sore, tounge, lips ect. I am using dicodole mouth wash which stings like hell but then numbs it after. I also track my TM, which are going up. im on 550 for the body and 49 for the bones.
If they go up again tomorrow then I know the cape has not worked this time. My onc only lets me have 3 cycles, I asked him about longer terms on it and he said no he didnt advise it? they all have thier ways and unfortunately we are the guinne pigs. I am very vocal with my treatments and I am lucky my onc does tests every 3 months or more often if I say there is a problem. I am so glad as I know many of the ladies on here have terrible trouble getting a scan at all.
I hope you all have a lovely week. I am off to see beauty and the beast with the grandchildren tomorrow and i am going to see Ghost in southampton with my friend on Saturday.
I also booked a mini cruise for me and my mum to belguim next week for the weekend. Hopefully I will be well enough to do all this. lol sending hugs xxx
Hi all, I do fairly well on chemo, but get nervous every time I start a new drug. I did 5 1/2 years of infusion chemo before I was given cape. I did like being on the oral drug. It was such a nice break from infusion. I went 2 1/2 years on oral. Then it was back to infusion. Currently I'm on oral again. I wish they had more oral choices for us. Best of luck to all!
PMOL..Paris! How exciting! That will be awesome! You are going to be busy getting ready! Your girls will be surprised! My oldest son turns 40 on April 13th. When is your birthday? FF
Hi Maldives,Mrs Goggins, uncle Tom Cobley and All, etc
Maldives, I understand how you felt when onc mentioned iv chemo....being on tablets makes being a cancer patient feel much more controllable...doesnt it? I really miss that and had no idea at that time, that it would eventually end and id be put on i/v.
how are your tms? Often they do them, but dont mention them to us...mine were being done for about two years when i was on cape and I had no idea. The other thing was that when I eventually asked for a copy,
i could see clearly that day to day stress had caused a rise...over time. But not everyonr is the same!
when I did have to go back on i/v, I was completely floored and freaked out...but after a couple of treatments, things settled down for me..both illness wise and emotionally.
i have also had muscle cramps( on Vinoralbine) I took tonic water but they went away on their own. Someone mentioned neulasta...I have filgrastim(similar) and have had some pains occasionally, but dont nowadays.
pain is just awful, isnt it? I have nakkered knees (from lifting people in a previous life) and even now with less weight, they still play me up!
cape did give me various side effects...Barton is the veteran there, to ask, but for mouth ulcers I did rinses of sodium bicarb after each and every food/ drink that I swallowed, horrid things, mouth ulcers....I made sure the peachy pills were not in my mouth long either...filled my mouth with water..tossed them in and swallowed quickly.
well, will shut up now.....apart from saying that yes, I too have a strange ongong virus which gives me a runny nose and nose/eye pain, but feels better intermittently! Very odd.
Hi girls - thank you for your messages. Today has been a good day although walking into M&S someone told me didn't look too good!!! 😒
Anyway, Funnyface, yes, I can tell you the surprise as I'm super excited and just keep praying that I'll be good enough to enjoy it... PARIS! And it will coincide with my 40th so should make it super special 😉
Thank you for your support, I know you guys understand xxxxxx❤️❤️❤️❤️❤️❤️❤️❤️
Good morning all. PMOL and Maldives. I'm sorry you are both in pain. Pain wears on you and pulls you down. One can only take so much. PMOL, your daughter sounds like a sweetie. It is refreshing to hear how positive she was with you. She wasn't stomping her feet and demanding something for her, she was taking care of her mum. You should be so proud of her! I'm like a little kid, can you let us in on what the surprise is in May!?!?
I'm not sure if this will help with your medications, but when you get a shot of nuelasta they tell you to take Claritan not Claritan D the day before and for a few days after to eliminate the SE's which is pain.I kniw a lady with a blood disorder and she takes it to counteract SE's for one of her drugs. Maybe this could help. Worth a try!
Hoping you both can get the pain under control. Hugs! FF
Hi Maldives and PMOL I'm sorry you have been in so much pain. Hope things are improving. It puts my own problems into perspective.
Hi Mrs Goggins I have sent you a personal message because we can't mention doctors' names on here.
love to all B xx
I understand... had another muscle spasm last week after my first zomets, they said it was my tumors flaring and that it might caus this. Ended up with stronger painkillers but that can lead up to addiction so to stop taking them as soon as pain was under control. They hadn't told me how to get off the pain killers from the first bout about z5wks ago! Anyway, decided to go cold turkey over the weekend and all I did was cry. Cry because of the **bleep** (excuse me!) situatuion, cry because I don't want to feel like my falling apart, cry because I don't want to be ill, cry because I want to be ok to take our girls (11&10) to a surprise holiday in May half term and just cry because sometimes aI feel like I cannot go on. This would happen at 4am as for some reason I'm waking up and at normal morning hours too.... the worse/best part wsa when my youngest came whilst I was bawling my eyes, gave me a hug and said that we'll get through this, just like we did last time... (not sure if there are any spelling mistakes as I'm crying as I type!!!)
i'm feeling a bit more normal now... so I understand the pits of being in a fiercely down spiral and then better... as I'm sure lots of other do too.
will pray that you don't have to have chemo and they will,find something else that could do the trick.
lots of hugs xxxxxx
ps. Have you guys been watching the Lethal weapon series? It's sad/dark humour involved but makes me lol. (Itv on the uk) xxxxxx any other series that you can recommend?
not been on for a while, had a few problems recently. had radiotherapy on Friday as the base of my back was in two. I had a MRI scan on Tuesday which caused me so much pain in my back nothing could ease it.
Have any of you ladies experienced this??? I have early on in my dx before the painkillers but the onc said it wouldnt cause pain???
Well it lead to radiotherapy as the pain was uncontrolable. Im on my third round of cape so mouth is very sore and had my zometa earlier in the week which gave me flu like symptoms. Along with sickness from radiotherapy I was in a bit of a state to say the least.
On the good side I woke up this morning and all was well. Felt like a human being again.
Its mad how one minute you feel like your on deaths door and the next your like a spring chicken???
I've got my scans at the end of the month bt onc is already talking about IV chemo, a bit nerve wracking.
Well no point in worrying it wont change the outcome.
I hope all you ladies are well and coping with various treatments your on. sending one big hug out to you all.