Hi everyone its lovely and sunny again here nr bude. im getting myself into a state as im off to have my pet/ct scan tomorrow and i still hate needles.i will be thinking of the cake and coffee after as i am not allowed to eat anything 6 hours before.i am confused as before i had radiotherapy to my sacrum for the bone met i didnt have any pain now i do . has anybody else had this ? hi to srilata am i right that you live in somerset . i lived there nr yeovil until we moved to devon 11years ago.
Hello Nicky and ff, I read an article a couple of weeks ago that said they have found that breast cancer cells travel around the body much earlier than first thought - even before you know you have breast cancer, or is detectable, in the first place! I have come to the conclusion that it is just bad luck.
Hi all, funnyface, I just want to say that I never had tamoxifen either, I was very young when I had the primary but I now know young women are put on it, I don't know why we weren't. Anyway maybe that's one that could be added to the list now. I'll ask next time I'm in.
Sorry to hear about your results FF but it looks like you have a plan A! I'm also changing treatments soon and just jumping through all the hoops here to get on a targeted trial at one of our main cancer hospitals. As to whether your BC would have come back if you had been given tamoxifen after your primary, who knows? I was grade 2 (nearer grade 1), no node involvement, early detection etc etc and put on Tamoxifen but it still came back. It may have been protocol in general (to go onto tamoxifen), and possibly delayed the onset of secondaries, but this is such a clever disease it finds its way around all obstacles when it wants to! I'm only saying this as we'll never know the 'what if's and it's tough enough anyway without wondering if we should have taken or been given a different route. Sorry if I'm saying something out of line but I respect your positivity about all of this cr@p but know how progression, especially if not expecting it, can knock us back. Been here, done that, several times! Hope you get on well with the new regime when it starts and it's easier on the aches and pains than letrozole has been.
Hi to all other mets ladies, hope treatments are going well and side effects kept to a minimum. Although I've not been posting so much lately (due to trying to sort out my own situation and change of treatment) I do read every day so am with you all in spirit 😊
Glad to hear these other hormonal sound easier than letrozole. Truly having hope to get rid of some pain. Will be on it til May 8th. Then the new drugs.
Girls, I wasn't offered tamoxifen after my primary. I went in for one of my yearly check-ups (7 years out) and asked why I wasn't getting it. Oncologist said it wasn't protocol for my age, at the time and no node involvement and I had done chemo and a bilatelal mastectomy. He said, since it had been 7 years no sense in starting it then. He said with the knew knowledge of 7 years later if I was just going through this he would have probably given it to me, but felt it wouldn't do anything for me to start it after the fact!! I think he screwed up!!! I went to my surgeon to have my port placed and she was going over my records and said I shouldn't be in her office!! She said with no nodes involved and my type of cancer and the use of tamoxifen it shouldn't have come back! When I told her I hadn't been given tamoxiifen she slammed her fist on the table! I told her what the oncologist said and she rolled her eyes!! She said, "Well there is no use in crying over spilt milk!" This then made me know I should have had it, nd maybe I wouldn't be in these shoes! FF
hi barton, yes exemestacine is much easier than letrozole because i felt like a 90 year old woman and now feel my age is rapidly dropping back to normal.
thanks for your reply, this site is wonderful!!
thanks neighbour, interesting about everolimus being withdrawn because that is what i've tol will be added in one month. i'll check that out when i see the prof and come back with details.
funnyface, thankyou so much for taking the time to write this, it is so useful and you have made me see i should not take no for an answer. thanks to you i am booking an appointment with a professor of oncology for a second opinion as i have been refused palbociclib because it is expensive! my husband had read all about this drug and thought it sounds really good. thanks again, your encouragement has maybe extended my life. i shall keep you informed. hope you're feeling well.
dinosaur hunt was great but now i have to up my game with the garden easter egg hunt on easter Sunday!
Hi Ramade, My oncologist said because I was on a combo treatment that just failed that a single agent would not work as well now. I don't know why! I've always only been on single agents of chemo. for almost 9 1/2 years. Then when it was decided to do ibrance (palbociclib) it is given with letrozole, I had my first combo. I never really had hormonals before that. In the beginning of this secondry journey my old oncologist had given me 4 months of lupron injections to shut down my ovaries. It didn't work. My tumors grew. He put me on chemo right away. He told me if the lupron hadn't worked that no hormonals would ever work. I went for a second opinion and that oncologist said he agreed I needed chemo. He said that he wasn't convinced that hormonals would never work. He said that he felt my oncologist didn't do anything wrong, but thought he went to light with treatment. He said that lupron would shut down the ovaries, but he would have also given me something to shut down my adrenal glands because they produce hormones. He said that if I ever wanted to try hormonals and my oncologist refused to come see him He would try them on me. When I saw that palbociclib was approved and I had just had a toxic reaction to gemcitibine I felt my body needed a break from chemo. In the almost 9 1/2 years I was given one little break from chemo. All my chemo was back to back! I told my oncologist I wanted to try palbociclib/letrozole. He said no at first, but I sat there dug my heels in and argued. He finally agreed. Well it worked!! I got the average time out of it! He retired after I was on it for 4 months! I so wish I could tell him he was wrong, that it worked! I had wanted to try tamoxifen this time because I've never had it. That is when my new oncologist said no, that a single agent wouldn't work as well. She said maybe down the road if we get this new growth stopped. Sorry this was so long but thought having the whole picture kind of helps explain what her thinking might be.
I was excited to see that you aren't as tired on the exemastane. I have been very tired and in extreme joint pain in the knees from the letrozole. The pain started within 2 weeks of taking it. I started it 2 weeks before the palbociclib, so we know it's the culprit for the pain. Then the palbociclib has made my legs weak. I have a friend who was on this combo and it recently failed for her too. Her leg strength has been comining back! I have hopes of being in less pain, legs stronger, and more energetic! Time will tell!
What are you doing for your dinosair egg hunt? You have my curiosity! It sounds like it will be a good time! FF
Hello, ramade, and welcome, although sorry you have had to join us. I can't help with the combo thing, as, apart from my original IV chemo (FEC-T), I haven't had a combination of anything. I have, however, been on Exemestane for a little while and I found it really easy - far easier than my previous hormone therapy which was Anastrozole. Good luck, anyway.
Also, another Devonian checking in! By the way, I'm jealous of your dinosaur easter egg hunt - that sounds amazing!
Edited to add: I should have said that I am no longer on Exemestane, as it was found that I was very weakly hormonal, so was taken off it. It was used as a break between cycles of Capecitabine anyway, which I have now returned to. Am currently on Cycle 27 of Cape, but have had a couple of short breaks and one long one between some of the cycles.
Hi Ramade, I have been on just exemestane for 18 months. There was a possibility of combining it with everolimus but then that was withdrawn, I haven't heard of any other combos with exemestane but I'm not the best informed person here. I shall find out soon whether it's still working. I have had very sore feet but then I'm quite old so was probably due to get them anyway. I'm glad you feel better on it and hope it does its job for you. I'm another Devon person Lots of hugs B xx
hello all, thanks for everyone's replies, i don't feel so alone now.
funnyface i am interested that you are being put on a combo i am just being given exemestane, do we give combos in the uk? i've no idea.
carolyn, glad to be your neighbour.
dinosaur easter egg hunt today with children
Welcome Ramade, Sorry you are feeling frightened! Every one of us gets scared all over again when our cancer acts up and spreads again! It is diffcult to face the changes in treatment. You read the list of side effects for the medications and it worries you to even take it. I know this cancer can spread anywhere but I don't know anyone with it in their throat. I live in the USA and my treatment just failed. My cancer us in my lungs, lymph nodes in chest and spine (T-11). Beginning May 8th I'm scheduleded to start exemestane/evermolinus combo if I can get funding. Not sure what the plan will be if I can't! Hugs! Let us know how you're feeling! FF
thanks carolyn, i can tell you that after 5 years on letrozole during which i felt exhaustion all the time, this feeling is starting to lift already so i hope the exemestane will work just as well.
hi everyone, i'm new to this site. my breast cancer has been in the throat for 5years and i have been on letrozole which held it back but now it has spread to bones(c3 and c4) top of spine and a bit in the lung.
you all seem so brave and i feel so frightened, i have been put on exemestane now so hope it works. i'm going to be a regular on here now hoping that all you brave ladies can give me some positive vibes.
thanks for reading
Grrrrrr for you girls too. This life line should be available to all!!
Have a good day, headed out to breakfast it's my daughter's birthday. FF
Wishing you all the best with your treatment, funnyface.
Carolyn and bonariensis, please can I ask a question? I thought Everolimus was NICE accredited in the UK. Have I got this wrong?
It's not good having to worry about funding as well as everything else you're having to cope with. I shall try hard not to moan about our NHS and be thankful for it. A leaflet about everolimus was waved at me at one stage as a possiblity but by the next onc appt it had been withdrawn.
There seems to be a general consensus about which option you should take.
Stay strong Hugs B xx
Carolyn, I trust her! I just never heard of that before about combos. I'm sure there is differing opinions on the subject! FF
Srilata, Thanks! I'm sure we will be chattitg about this combo if I can get approved financally to get it. ! Happy it is working well for you!
Barton, Thanks! I will be happy to go anywhere! Just need to get out of here!!
Janette, I agree on the financial issues. No one should have to fight for medicaions they need! If I were a politician they would see that I got it. People here in the US think your national health care is the best! I try to tell them it is full of problems too! I tell them about how drugs were wiped off the list for you ladies. That you all seem to wait way longer for results and action for changes in meds. Maybe they should ask the people what we need!! How about the government cutting back on their spending!Let us put them on a budget! FF
Ff, that holiday sounds perfect for your milestone anniversary! And yes, you really should celebrate seeing as you missed out for your 30th.
Sorry, however, to read of your latest CT results. And sorry you have been faced with such a hard decision. For what it's worth, I agree with you and everyone else, that Option E sounds the best for you. It also leaves things open further down the line if they are needed then.
Good luck and best wishes. Barton.x
Carolyn, Yes Kisqali (ribociclib) has been licensd.We discussed it yesterday. My oncologist says it works exactly the same as the ibrance. She feels it won't work for me. She feels I wouldn't get approved for it right after having ibrance. She said she isn't saying no to it entirely, that maybe in the future we could try it. She would like to "follow" it for a bit and see what happens if others do it after ibrance and the results. I don't know if you have ever heard of "revisiting" a drug. Some times when you have had a drug fail you can try it again years later and it will work again. We both felt this is what it might be like to use Kisqali. We both felt even though it's a different drug bc it works the same way as ibrance that maybe with the time in between it would give it a better chance to work.
I have a question and wonderinf if any if you have heard this? She told me that once you do combo drugs that it usually d o sent work to go down to a single drug. That you really need a combo? I've never heard this? I really haven't paid attention to mother's drugs to see if they have done a comb then tried a single drug next time. FF
Helen44, We were supposed to go to Florida but our refrigerator broke, and both cars! The cars were very expensive repairs so no money for Florida. We have a friend with a shore house in New Jersey. It is right on the bay! You walk out her door onto a deck and the outer edge of the deck is over the water. It had been destroyed by hurricrne Sandy and hubby and I helped them get it back together. They said we have ear n ed life time free stays! We can take our dog too, so don't have to bother anyone to watch her. She loves it there. Margie and Brian like our dog and always tell us, to bring her! It will be perfect! FF