Morning Annie
Pleased u managed to get on trial. I live in the Washington Tyne & Wear. We may even have the same oncologist.
I mentioned the last time I saw oncologist if I could be given that treatment when the E/E combo I was on had failed after about 4 years.
I have been on Letrozole from 2010 till 2014 maybe that is why I could not be given that treatment. I have now started on Cap.
Hope your treatment goes well.
Linda
Hi , just a quick message, I have seen on here somewere last night that there are 15 on the trial drug irance, in the north east . My eyes won’t let me stay on here long before they are staying enough. How can I find out more info of others in my area. I am on cycle 3 irance /letresol, & feel very alone, as I can’t drive since Jan , & until I get the eyes sorted I can’t stop on here for long.I will check back later, please exsuse any spelling trying to rush it. Love & Hugs to you all Papillon
Hi. Papillon and Dutchy. This is my first time posting. I’m in Yorkshire. I was diagnosed with secondary liver mets in May this year. I’m currently on ibrance and letrozole. I’ve just started 5th cycle of ibrance. First 2 cycles were at 125mgs. Struggled on that dose and bloods not good so then went to 100mgs. Initially felt quite panicky when it was reduced to 100mgs and was fretful that it would not be an effective dose. Take a look on the american inspire forum. It’s really helped me understand more about this treatment and side effects. I can totally relate to you guys feeling a bit isolated. I’m the same no one else on this treatment where I am.
Since reducing to 100mgs Side effects are bearable but I don’t think any of us would choose them would we!? Initially my hair seemed to thin but after 3rd cycle it hasn’t got any worse thankfully. I’ve found that drinking loads of water helps. If I don’t I get really bad headaches and nausea. Cyclizine has helped me manage nausea as well. Is any one getting problems with foot pain? That’s started in recent weeks. My eyesight seems ok - sorry to hear Papillon that this is troubling you and for you Dutchy with pain of bone mets.
Thanks to both of you for posting it’s helped me not feel quite so isolated on this treatment.
Janie xx
Thanks bon
That’s really good news. …I think many ladies here will be given the option of it …
Hugs xc
Fantastic news! NICE have managed to negotiate a good price too by all accounts, well done to them!
I have breast cancer and secondary cancer in bones. Also in lymph nodes. In October I was diagnosed with bladder cancer but I had surgery and I am clear of it. For my other cancer I was told that it was not curable but treatable and I am taking Letrozole and Palbociclib 125mg and I am getting on ok with them. I have had a swollen arm for 2 weeks and it hurts, had a scan in case I had a blood clot, thankfully it was not. My oncologist said yesterday that it was lymphodema and is sending me to specialist to get arm moving again. He said it might be the tablets but seems to think it was lymphodema. I am on my 2nd lot of Palbociclib and oncologist said yesterday(when he measured lump in breast) that its not as bad as they first thought. I have to have a scan on chest and pelvis in December, with contrast. Im not frightened of scan but I am scared with the results
Hello everyone. This is my first time of posting. I was diagnosed with Stage 4, secondary in the bones and various lymph glands, in September, having found a lump in my neck. I am on Palbociblib, Letrozole and Denosumab. I have just completed my first three weeks of Palbociclib and everything seems to be getting worse… I have gone from being asymptomatic to having some pain in my breast and chestplate area, a cough and breathlessness. My oncologist has ordered another round of scans - to see if the changes are due to the treatment or to the disease progressing. I am very frightened. I wondered if anyone else has had any similar experiences?
Hallo SML and welcome to the club! It is easy to say but try not to worry until you know what you are dealing with. Your Onc has ordered scans which is exactly the right step, if Palbociclib isn’t working for you there are still many other options. Palbociclib is new in UK, as I posted on another thread, but is well used in U.S. and I have read that it sometimes can take several months to show an effect. Be guided by your Onc but make sure he has experience with this new drug as well.
Im on a drug trial with it and after my first 3 weeks I got a throat infection and lost my voice. It’s never happened again and I’ve been on it for 21 cycles. So it could be your body getting used to it but scans will show what is happening and whether you should continue. It doesn’t work for everyone but you have many options. Good luck and keep us posted x
I’m really pleased for all of you that are having palbociclib now. However, what we now need to do is lobby so that those of us who have already had chemo - and are on this roundabout of drugs which work for a while then fail - can also be given this drug if it’s suitable xx it could extend our lives.
it does feel as if we are being hung out to dry…it isn’t fair…it is discriminatory.
Moijan???
I’m right with you, Moijan, much as I am delighted that Palbociclib has been approved for first line metastatic treatment I am surprised that NICE hasn’t considered it for pre-treated patients who need another lifeline. It does come with side effects so a pure hormonal would seem a better first step with a secondary diagnosis as it is more easily tolerated.
Still, who am I to know? x
Today when I saw oncologist he said that he’s happy for me to continue with letrozole as it’s doing well but if I get any progress will have to add something else …I asked what and he said we have new things coming along now so can hold back on chemo more these days …
So I don’t know quite what he was hinting at .
Hugs xx
Hi ladies, quick update from me, I have posted on bone mets thread but thought I’d add it here too.
I was dx with bone mets in November, started zoladex and exemestane in December and first zometa booked for Wednesday (tomorrow).
I saw my oncologist yesterday and he is keen to get me on letrazole/palbociclib (ibrance) combo asap and is confident that I can pick up the drugs on Wednesday when I go for my zometa infusion.
It is interesting that my onc said it was approved in November for first line defence against secondaries but did not say that you only qualify if you haven’t previously had chemo. I had 6 months of chemo in 2014/15 and he is going to “cheat the system” and say that I didn’t take the zoladex/exem as that would preclude me even though it was just one month.
Also everything else I’ve read about ibrance says it’s for post menopausal women, but he’s giving it to me with zoladex because I’m pre-menopausal.
May be I’m lucky and have a good oncologist? He is a leading clinical oncologist in our area and heavily involved with trials. He also wants to get me on the cyberknife trial.
I’d be interested to hear how you are getting on fellow ibrance buddies (Susan, Dutch, Jamie, Anniej … anyone I’ve missed!) - some of the SEs look as bad as chemo and I want to keep working, dog walking, fitness/yoga and ferrying my kids about!
Xx
Hi. The NICE guidelines say it is first line for secondary breast cancer. Any chemo you have had as part of a primary diagnosis does not count.
I do not think your onc is alone in bending the rules for you. I have recently started Ibrance and letrozole after other treatments. First marker indications are that it is working…
Hello annrose
I’m not on the same treatment as you but take exmestance and everomus. .I found taking both together made me very sicky, dizzy and headache. I split them now. Exmestance mornings and everminus evenings which as really helped. Not sure if it’s recommended but if it helps. .try it.
Xxx
Great news Annrose
I’m so pleased for you, River, that is a great result! It’s lovely to relax again for a few months isn’t it? I never know whether to keep reporting my trial results as so many of us haven’t had the chance to try Palbociclib, but I have been taking it in my trial for nearly 2 1/2 years. I have had side effects as I’m still on a high dose but it’s worked for me, I’m so grateful to my team at the drug development unit.
Im sure you will have continued success now it is working for you x
Thanks stillhere, I think it’s nice to post a good news story to give a positive boost to those embarking or treatment or feeling overwhelmed with side effects. Hopefully a little positivity from me helps some to keep on track.
Morning riversidedawn, it’s great that this new combo seems to be working for you. ???
I’m also on zoladex injections. I started letrozole last Friday and I start Ibrance this Monday, so I’m very keen to hear from anyone who is having success.
Especially anyone with liver mets please.
Hello everyone,
I work on the Policy and Campaigns team at Breast Cancer Care, and I wanted to ask if anyone has been treated with ribociclib in combination with fulvestrant?
This combination is currently being considered by the National Institute for Health and Care Excellence (NICE) to be made available on the NHS in England for treating advanced hormone-receptor positive, HER2 negative secondary (metastatic) breast cancer.
Ribociclib in combination with an aromatase inhibitor is currently available as a first-line treatment on the NHS in England for hormone-receptor positive, HER2 negative locally advanced or secondary breast cancer. However, its use in combination with fulvestrant will also offer those who have previously been treated with one line of hormone therapy for their secondary breast cancer the opportunity to benefit from this drug.
We are gathering evidence to contribute to NICE’s patient carer groups submissions and we want to hear from anyone who is being or has been treated with ribociclib in combination with fulvestrant to help us inform our response on what access to this drug would mean to women with hormone-receptor positive, HER2 negative breast cancer.
Your answers will be collated and presented to NICE and any quotes or information you supply will be anonymised in our evidence. The questions we’d like you to feedback on are:
We are looking for responses by Wednesday 19** September**.
If you have any questions about our work in this area, please email campaigns@breastcancercare.org.uk.
Thanks,
Olivia
Hi This is my first post :smileyhappy:I have dx with secondary with small nodes in both my lungs following a PET Scan. I’m on the third cycle of Ibrance, and feel really good. Only bad at night when I stay still for too long, I get severe joint pains. Love to hear of ladies been on the cycle of letrozole and Ibrance for a number of years, and what their experience has been?