Hello everyone, it is ages since I contributed but I do read all of your posts every couple of days.
Carolyn I find that the Novartis brand is best for me and I have been on Letrizole for almost four years. After a year or so of taking whatever the pharmacist gave me I decided to keep notes because I had read that differing brands can cause problems, and I sometimes had bad joint pains, tiredness and upset stomachs.
anyway after about six months I discussed this with Onc - Showing him my notes-he suggested I speak to GP and he put a note in the routine letter he sends to GP about it.
saw GP who was brilliant and put a note on my records which shows which brand I should have.
after a couple of months I was given different brand so I took them back. Receptionist spoke to Practice Manager who told her to tell me that it made no difference. I then asked the receptionist to ask the PManager if I could speak to HER ( with apologise to receptionist). P Man very reluctantly came out to speak to me, she said that it didn't make any difference, it was the 'trade mark' that counted. I explained that different companies used different substances in their pills etc and that both GP and Onc agreed I should have the brand shown. She then told me that they were expensive and some times difficult to get hold of.
okay I said I will order them earlier each month so they have plenty of time to get them.
same thing happened a couple of months later so I wrote to PMan (copied the letter to my GP) and asked if I could make an appointment to see her and the GP together so HE could explain to her.
My GP actually rang me to apologise!!!!! He said he'd explained to her and it wouldn't happen again....and it hasn't.
i know that not all of us have such good GPs, but everyone - doctors, nurses, receptionists are really nice. Just the practice manager, and I suppose that she was just being a bit over-zealous.
hope everyone is as well as they can be.
just wanted to jump in on this thread, I have just spent a few minutes having a bit of a cry whilst in the shower, I allow this space to contain" tears for fears". I always go on a downer at the end of every season, its a bit scary isnt it jumping off into the unknown , when we have managed to get through the last season.
I work in an oncology hospital and talk to the junior Docs informing them ,how it feels to be on the patient side of this disease and how to communicate , anyway, at the end of one of these little sessions, a senior clinitian told me , it had never ever entered his head that change of season might effect our moods, depression status and ultimatley treatments ? and he now bears it in mind in clinics every season change.
The march of Time is very strong, but two weeks in and I am alll settled again, hope you all cope with the change, sending you all hugs, and a bit more sunshine xxx
Hi Sharon, hooray you have escaped! So sorry you have had to spend time in hospital but the only consolation would be that you have started your new treatment and you would have been under the watchful eyes of the doctors and nurses. Breathe, take in the fresh air (I do that even when I've been for my 3 weekly treatment, I hate being on the ward!) and recover some strength - and eat something not from the hospital kitchen!
Hi Debbie - it's a good idea to keep away from SBC reminders, when you don't want them! My previous oncologist used to ask me 'do you think about your condition' and I felt like saying - yes, because I'm on a secondaries BC forum every day! This was when my bone mets were stable and no symptoms so there was no other reason to change what I did! Anyway I wanted to say, at this time of the year lots of us can feel low, as you have said, the summer is over etc, however that is also how lots of people without cancer feel so it's not to be unexpected. But you now know where you can share your downs as well as your ups! Also, over the years I have learnt that bone mets will always show as stable, never NED or 'gone', as the scarring is always visible, they just sclerose (harden) so stable is a great result 😊
Hi to all other SBC ladies, I have been away for a few days with my youngest daughter, having a mini break before she starts her intensive cooking course 😋, so I'm trying to catch up on posts.
Hi Debbie... Good to hear from you. Yes the disappearing sun can bring a low.
Stable is very good indeed - it's a reason for cheer as it means what you are taking is working and stopping things from spreading.
I went to to the garden centre and decided I wanted winter flowers so I can sit and look at them throug the window. I got loads of violas which are like small pansies... So many lovely colours! Gonna try and have the most colourful winter garden I can. There's a gardening club thread on the private group - post us your pics!
Good Morning Ladies.
I haven't been on the forum for a little while as actually wanted to try and put this 'condition' out of my head as much as possible. Guess most people could call it denial but as its been summer holiday time I really didn't want it taking up precious time. I think when the sun is shining all seems so much better but now the sunshine seems to have disappeared I can feel my mood slipping somewhat. I have been on my hormone treatment now for nearly four months - Tamoxifen, Zoladex and Ibandronic Acid (for bone secondaries). Hoping that they are doing the job. At first review in August got told all was stable. Was secretly hoping that I might get told that it might be regressing but stable is good isn't it? Back in November for another scan and review. Anyway I think I just felt like I needed a little ramble this morning. Hoping everyone is doing OK and sending positive vibes out to all. I think I may go off to garden centre this morning to get a few bits. Debbie xx
Crikey Sharon, here's to a restful week after all you've been through. So glad you have escaped the 'hotel'
sending cyber huggles your way
Sharon, Home sweet home! That's wonderful! You have been having a rough time. Hoping for some easy times for you! FF
so pleased you have been able to get home now you can relax with the comforts of home. You really have had a lot to put up with and I wish you a speedy recovery
Much love and (((hugs))) xxx
Sharon, Glad you were able to proceed with your treatment! As bad as we all would like to have a break from all this, we know we don't want to miss many treatments. You did good getting through it! Now, to get yi h an escape plan! FF
So pleased to hearthe bloods are ok Sharon and that you had the Eribuln...well. Done! Hopefully you can. Get home to orrow.
everything is crossedxxx
Hi sharon, glad to see you are still 'upbeat' despite all you are having to endure at the moment. Lets hope you get the sickness nder control and get home fast. Lots of love.xxx
Sharon, I was away for 2 days, just saw you booked one of those vacations nobody wants!! Hope you feel better now that your drained. I haven't had to do any drainage, but it doesn't sound fun! Hoping this chemo kicks in and gets ridof the problem.FF
tough day then ....so sorry. Hopefully tomorrow will be better. Good you are having the Erib.
I was feeling fine today and this evening..I think it might be partly because ive been pushing the fluids even more than usual. I know it flushes stuff out quicker but the effects stay around.
have a good nights sleep tonight Sharon if poss and let us know how the infusion goesxxx
Hi Sharon, sorry, my ipad is playing up and kept throwing me out!
nice to hear they are looking after you..yes, they may well. Be worried about having given you inaccurate info. Am sure they are sorry. However, what a shock for you...and its amazing they did give you that stuff...was it someone elses stuff..by mistake? Or had they mis read the report? Goodness...we all make mistakes, but that one you didnt needxx
The rescus thingy that spooked you...it could be hospital policy I guess, but you could feed back how it made you feel( but prob not worth doing)
you are doing really well Sharon and one brave lady. As I said, you have bern there before( being drained) and so you know what to expect.
re tumour markers, yes I know they go up and down, im currently happy, but we all know these things can change...
hope you get the Eribulin tomorrow as planned, maybe you will feel a bit better soon...hopefullyxx
i have a good feeling about this drug...its not a cure, but it has given people a lot of. Mileage.
am off for my dose today, please keep your fingers, toes, legs and eyes crossed for me and. My veins!
when you feel heaps better, may travel to Southend to build a sandcastle and hope you are about, And feel up to giving me a hand
Thank you Stresshead, im under no illusions, we are all going on the same train! However, mine have come down drastically in two months.....which feels pretty amazing. When i looked back they are better thn they been for 16 months. So im quite pleased. I guess the next mri will be the telling!
i am glad you are doing well too, take some joy in the results! It isnt always like this.
Janette, a little late but was so pleased to hear your fantastic news. Enjoy your holiday!! xx
Sharon, sorry to hear you are back in hospital, its horrible isnt it. Still at leasts it sounds like it will be a quicker visit this time. Hope you are soon sorted and home again.
Moijan..glad to hear your markers are still going down. I now always ask my onc and like you, for the last 4 or 5 times they have been decreasing. However, he did say to me today not to read too much into them. He has told me that over the course of the disease they can go up and down for loads of reasons. Just i thought i was getting some good vibes, i have them dashed again. I know they are not definitive and sound indicators but it was nice to think that something good was happening when they dropped...i think he was just trying to say dont get disheartened or anxious when they go up but i still felt like he'd rained on my parade.I dont mean to do the same to you but wouldnt want you to get despondent if they do start to go up, although i know if you are anything like me, i will anyway!! xx
On the denosumab front..i think i heard , read or was told that it is newer than zometa but more expensive so may explain why not everyone has it. I had mine six weekly from the start to fit in with my chemo cycle and until its found that my bones are worse i dont suppose they'll cahnge it. As a few of you have said, you seem to be getting side efects with a four wekly regime so perhaps six is the optimum. Will be interesting to see if the side effects reduce.
Best wishes to all. xx
Some of us have been mentioning meeting up on another thread and we seem to (sadly) be a big community on here at the moment.
I'm going to post on the meet ups thread - under living with secondary breast cancer - and see if we can get something/ things organised for anyone who wants to join... Hoping I won't be billy-no-mates sitting in a cafe on my own somewhere 😂 So please check it out if interested!
That sounds nice Carolyn.. Both Bude and the shopping!
My hubby's been away working for 14 days (Poland) and is back at last tonight...hoorah!
Maybe that's why I've been down as he's a funny lovely man and keeps me and the kids highly entertained 🙂
Went to garden centre today and bought some lovely winter flowers..violas.. Gonna pot them up tomorow and try and post on the gardening thread :-))))))))
helen - hugs to all xxxx
Yes Carolyn, chocolate rattles!
did post this on the erib board, but my tumour markers just keeeeep on going doooown!
and im feel much happier, said to my lovely, really nice, patient and kind onc, that id been depressed and he said, well theres so much going on anyway for you. You cant be certain its the drug..guess hes right.
Carolyn, how can I get my partner to bring me down to Cornwall...id love to go down there,he doesnt lkie holidays and its such a long drive.
Hi ladies hope you all survived yesterdays very high temps? Hope the eribulin people are all doing well and that the xgeva people arent getting much bone pain! Im back on Zometa and fibd it suits me really well.
have a lovely day.
carolyn ...today feels like a chocolate day, doesnt it?
I just had my 7th one too and experienced bone pain today. Not cool, becaue it reminded me of Taxol. I've had very little side effects from Xgeva, but I'm now wondering if the pain is a build up of the injection. Is it going to get worse? I took Tramadol today.