Well, I'm off the faslodex already. It seemed to give me stiffness, aches etc and reduce mobility. Had an urgent scan and there are more deposits all down my spine which aren't helping. Oncologists are on the ball though and immediately booked me in for rads planning next Tues. They will look at areas needing attention and which bits have been done before and take it from there. After that, it will be another look at hormone therapy or possibly chemo if I am fit enough. Bit of a set back but have to get on with it and hope there will be some gradual improvement!
Thankyou Julie and chocolates, still manic on steroids last dose tomorrow, cant settle and got verbal diarrhea, OH taken his hearing aids out, poor love.I have visited the Dark wood thread and lit a candle for you all in the virtual chapel that is still in the wood .http://www.gratefulness.org/candles/candles.cfm?l=eng&gi=ddw
Femara is the Novartis drug given to me at DX for only 3 months, I have tried over the last 3 years 14 different companies making Letrozole and the only one that suited me was the Mylan Brand which I took for a year and now lo and behold they are having problems with production and is not expected to be in operation for another year.this brand does not contain Talc all the other brands including Femara do.Teva ,Sun and Sandoz seem to be the general Letrozole prescribed.I have all this to-ing and fro-ing to thank for my secondary diagnosis, Angel of a BC nurse told me to drop Letrozole for a week and sent for CT Scan and found a result??Have now been taken from Letrozole and may be given other type after Chemo,somewhat worried because Letrozole the gold standard drug or should that be Femara?I n the early stages of Femara I took a supplement called DIM (concentrated broccoli) this became quite expensive so grew broccoli sprouts and ate brocolli soup, dont know wether it worked but was willing to give it a try.
Wow so many names are so familiar on this thread and a great many of them in the past was about joint pains from Letrozole, if only those drug companies would read these threads, instead of sending out silly forms which I am sure no one ever reads. So sorry these Steroids are making me Rant I am such a gentle old Granny honest xxLove and Light xxMavis
Thank you all for my lovely welcome, into now not so scary a place.
Had my 1st Chemo yesterday Taxol and demusimab injection, all went very well needle in 1st time but asked if I could be referred for a PICC line for the next 11? treatments. Did I do the right thing?heard scary stories of line infection but the thought of those poor nurses trying to locate a vein fills me with horror.Of course I am "high" on steroids and anti sickness today, so a fair bit of batch cooking done. Unfortunate planning but my house is occupied by painters, with a penchant for strong tea and scones "often".this glorious weather has them now working outside so I dont feel so trapped.
Several ladies in the chemo unit informed me that I would not feel as bad on this weekly Taxol as I felt on my 3 weekly doses of Taxotere and Cyclophos after my Mastectomy 3 years ago, I do hope that is so.
Feeling good at the moment will get more news of MRI and leg XRays next week from Oncologist thankyou all again for letting me in, the info on here is so great.Love and Light Mavis xx
I haven't been posting for a while, but I have been reading all your posts. Welcome to the new ladies
Some ladies like Tracy do have different side effects according to brands, I have not noticed anything.
I have been on letrozole and herceptin for over two years without any side effects. When I was on tamoxifen I started taking glucosamine for joint pain and I did not stop when I was switched to letrozole upon secondary diagnosis. I have been fine ever since.
Being secondary lady, you will be on herceptin for the long run. I sugges you ask for a portacath to be fitted so that you save your veins. A portacath is subcutaneous, so it does not show, you can shower, go to the swimming pool; well worth it.
If you are lucky, you could get a power one, which can be used to inject the contrast for scan. I wish I had one of those. They stabbed me 9 times before they could canulate me...
Had a long onc appointment this morning the upshot of it being that after 3 weeks of analysis I am informed that the removed tumour from above the sternum has changed receptors to HER2+. It is not a bone met but a local recurrence and my bone mets are currently stable. They are starting me on herceptin on 24 June, changing tamoxifen to letrozole, and continuing with zoladex & denosumab. Oh and I am having 5 days of radiotherapy next week on the chest area from whence the new tumour was removed! All good fun!
Any hints on coping with herceptin & letrozole would be gratefully received!
Hope everyone is coping at the moment.
At least the sun is out......
Love Helen x
Hope treatment is going well. I am waiting to see onc tomorrow after recently having had a bone met removed from the area above my sternum. Apparently I am on the cusp of changing from HER2- to + so we will see what tomorrow brings.....
I saw this article in the Telegraph last week - it makes interesting reading
Hope your operation went well Helen (2catlady).
BIg hugs, Helen x
Good luck next week helen, sending you love and huggs, I will be thinking of you.
Chris, sending you love and huggs too, I cn'at imagine what you ladies are going through as I am only strarting my journey with this horrible disease.
You are both srong ladies who have been a valuable support to us newbies, in a difficult and scarey time.
I have my appointment next week with the oncologist so I will know just how far this has spread and will have some sort of plan, I am sailing in the wind at the moment.
sending love and huggs to all you ladies, thank you so much for being there for me.
Good luck with your operation. Are you still at the same hospital as before.? I am just waiting for a date for redoing the reconstruction which I was not happy with. Been for pre op assessment on 30 May. Could have been in Saturday gone but I am still on everolimus which can cause problems with healing. Rang oncolgist last Thursday she said I would have to be off it for a month after surgery but not before. I don't think waiting list is too long. Will let you know if the plastic surgeon does a better job than the breast surgeon who is also trained in plastic surgery. Take care. Linda
Hope eribulin kicks some butt. When you're in the sink it can seem like you'll never climb out, but hopefully, day by day a bit of brightness returns. As Belinda says, be kind to yourself and we're all thinking of you and sending comforting thoughts.
That's great news. I'll be thinking of you next Tuesday. You'll be done and dusted before you know it!
Have a great week of spoiling yourself and let others spoil you too ((((Helen)))).
Hi Helen, just want to wish you good luck for your op next week, been reading your posts and so sorry you have had such a rough ride with things, i dont really post much on the forum but i do read what you ladies write and it has really helped me as im quite new the secondary dx gang!!!
i have my first denosumab next week and have just received letter telling me to have bloods done 2 days before hand and a pathology form with "pre-chemo bloods" wrote on it?? does anyone know what that means? i thought it was a bone stregnthener??
Hope you enjoyed that cake Helen you take love Janette xxx
Great news Helen - I have been thinking of you today. Enjoy the next few days and good luck for Tuesday - heres hoping that everything will be on its way up for you from now you deserve it!x
That's great news Helen. Glad he seems a nice person too. Makes a change for you to have someone you can get on with! My onc looks really young too but if your surgeon is a nice as he is you will be OK. Not long to wait either so as chocolates says, spoil yourself this week.😊 love Sheila. Xx
Sorry things aren't good at the moment. I know how you feel as I had been running pretty smoothly until last Dec when on top of my lung and bone Mets I had progression to the liver. I have since had taxotere and am waiting for a scan in two weeks to see what things are like now. My scan halfway through treatment showed some shrinkage to the liver tumours so I am hoping they are smaller still now! I certainly feel better than I did in Dec and Jan.
Hope you have good results from eribulin without any side effects.
Take care. Love Sheila. Xx
Sorry to hear that you've not been well lately. The ladies on secondary live chat tonight will be there to support you if you can join us later.
I haven't been on for a while and I've not been too good. The MRI scan shown that there is progression to S1 and L2, I also have progression to the pleural, tumour in my lung has grown, there is a large lypnme node pressing on my neck and that I now have liver mets. Im in a sink at the moment and don't really know which way to turn.
My oncologist has arranged Radiotherapy for S1 and L2 which was a heavy dose that made me very sick for a couple of days. The pain has been pretty horrendous but I have got my doses about right now and using ibrufen and paracetamol which is helping. I start eribulin in the 16th and have had to cancel so many things which hasnt helped my mood.
Im just trying to take one day at a time and hope that when I get through the worst of the fatigue I'll start to pick up again.
Life is never easy is it? I really hope you are alll doing as well as you can be.
Hi Helen, I've also been away so have only just caught up on posts. At long last someone seems to be doing something but I can't believe they have taken this long, grrrr. Hoping you do get a surgery date asap so this part of your treatment can get going and you'll have more idea of what other treatment is needed. My secondaries have changed from being only hormone positive to now being ER, PR and HER+ so it can happen. Strangely my oncologist (when I found out from a biopsy last year) was more surprised than I was that this can happen, duh. I recommended he read this forum! Thinking of you as you wait for yet more appointments and well done for eventually getting your PIP (do we really have to fight for this all the time?) and for telling the BCN how badly you have been treated or in fact ignored.
Mileytom - don't beat yourself up for not having chemo first time around, I was exactly the same. Grade 1, no nodes, 90+% chance of a ten year survival and wham, got my secondary dx nearly 5 years afterwards. Well, I suppose they got the 90+% bit right as I'm still here, but.....
Thankfully these forums again helped so much and reading them made me realise that it would have come back anyway whether I had chemo or not for my primary. I had chemo for my bone mets in 2008 and this kept them stable for 5 years, along with follow on hormone therapy until last year when I had spread to my liver. However since starting Capecitabine (Xeloda) last Feb everything again has been stable. Just waiting (quite literally) for my next CT scan to see how things are going. I'd also add that if you are coping Ok with the chemo I would do the 18 weeks (as thats the usual amount of time for 3 weekly chemo regimes anyway) and really hit the uggers with all that you can
Hi to all other boney ladies, hope the treatments are working well and side effects minimal.