hi I’m Sharon uk I’d love to chat to other people with breast cancer metastatic

[Sharonpat]

I’d love to talk to people with metastatic breast cancer Liver/bones iv had pet scan 2mri scan 8 biopsy 2 ct scans

Iv had 6 rounds chemotherapy

And I’m due to start letrazole and inhibitors around end march /April

[Claireperth]

many of us have varying types of mbc, so please keep in touch as the people on this site are amazing with their knowledge and advice 🌸

[Sharonpat in reply to Claireperth]

Thankyou Claire I only got diagnosed in October 2022 I’m having 6 lots of chemo and then iv got to go on to letrazole and inhibitors

[Trissh]

This is the place to make that happen! Lots of questions shared here can be addressed by other who have already been through many of the treatment options. Advice, opinions, experiences and encouragement is ready to be shared. Welcome! --Trish

[Sharonpat in reply to Trissh]

Thankyou that’s lovely to hear x

[Liessie]

hi , I am also in the UK, the North East, I have metastic breast cancer in the lungs, I have been on Ibrance and Letrozole, for 2 and a half years, I find the ladies in here are a great comfort , I feel I can get lots of positive advice and support , I never feel alone since I joined , it’s a lovely comfort to be able to have a group who understand how I feel , and me understand them , you will love being able to come in here and see how we all share our ups and downs , and help each other with different problems and positive advice , welcome aboard

[Crazycocker]

Hi, I have metastatic breast cancer involving bone and peritoneum. I’m in the uk, in south Devon. I have been on palbociclib and letrozole for nearly 3 years. I have found this forum to be very informative, helpful and a positive experience. Welcome 🙂

[Bettybuckets in reply to Crazycocker]

I have just found out I have spread to perituneum too… so now they switched me to cape since that meant Ibrance wasn’t working… cape made things feel better for a month- bloating had stopped. But now I feel Like a dull ache in my tummy. Do you have tummy symptoms too or is the Ibrance making you feel completely well… except tiredness of course. On cape at least I don’t feel any fatigue.

[Liessie in reply to Bettybuckets]

hi , I too have a dull ache in my tummy and I feel bloated , I am not sure if it’s the Ibrance or Letrozole causing it , but I do find drinking a lot of water really helps , I am due a scan in a couple of weeks , so I think Scanziety makes it worse , I do get tired , but I am 62 , no spring chicken 😆

[Bettybuckets in reply to Liessie]

I’m 62 also! I’m in a 7 week visit to NZ so I saw my old NZ oncologist and she said if I feel like the ascites is back( my last scan showed I had a small amount of fluid in there, then I should get a scan…… in my case it will be my ureters getting shut down again… for better during this month on cape. But if it stops working, then I will have to have stents to keep them open so as to not cause kidney damage. That will be important to one day get into a clinical trail you need adequate kidney function. I really appreciated what may happen next with the features I have and from my previous scans, because my USA Onc never jumps ahead and just says wait and see.

[Crazycocker in reply to Bettybuckets]

Hi Bettybuckets,

My diagnosis was metastatic from the offset, I was put on the Pablo, letrozole combo from the beginning, I was told that the pains I was feeling in my peritoneum was a result of a previous surgery to repair a hernia and scar tissue. My breast pains and the fact that my breast were growing and feeling hard was put to menopause symptoms, as were my joint and bone pain. The palbociclib and letrozole have done a fabulous job of reducing and controlling everything. My CA15.3 started at 201 and is now on 31. I have results of a MRI, ct scan and nuclear bone scan due in a couple of weeks which I’m excited and petrified to see! Sorry, a short answer your question is yes I still have pains across my tummy, but it all feels much more comfortable now, and yes I get tired, I’ve been on a 3 week on, 3 week off cycle for the past 2 years as my neutrophils drop so much. I do feel stronger now than I have in a long time, I think I’m finally getting used to it, but my bone and joint pains are getting stronger. I think that’s the letrozole maybe? I’ve not heard of cape, I wish you a good response from it 🤞

[Bettybuckets in reply to Crazycocker]

HICC, capecitsbine is also known as Xeloda a pill form of an old chemo IV. I think it is working but have to wait until the first scan to see. But I feel better and love that I don’t have fatigue from it

[Crazycocker in reply to Bettybuckets]

ahh I have heard of it, but didn’t realise what it was. Good luck with your scan, but if you’re feeling better and not feeling tired then that’s got to be a win?

[Claireperth in reply to Bettybuckets]

I took ibrance for 9 months together with letrozole before the ibrance stopped working. The ibrance was fine except for diarrhoea. The letrozole however was a bit hard x 3!!

[Sharonpat in reply to Crazycocker]

hi I have got 1 more lot of chemo just had 1 today and then I’m going on letrazole and inhibitors I’m a bit worried about the side affects

[Crazycocker in reply to Sharonpat]

Hi Sharonpat, bless you, I hope you are well with your treatment. On the whole I feel really well and am able to work, walk my dogs, and live, and to me that’s everything and I’m so grateful, but I’d love an hrt patch! We all react differently to treatments and I hope for you it all goes well. X

[BritSammy]

welcome Sharon, I am in the UK in London and having my treatment for metastatic breast cancer to the spine and lymph chest node. I have been on Ibrance and fulvestaurnt for one year and just started a course of radiotherapy. This is a fantastic and supportive forum .

[Sharonpat in reply to BritSammy]

Thankyou that’s great please I found this group

[Ursula_I]

Hello and welcome! I am also 52 years young and from UK.

Sorry you've had to join the board but this is such a lovely bunch of people, shoulders to cry on, hands to hold, holiday pictures to share and above all lots of encouragement and advice.

I've got MBC to my skeleton, liver, lungs, brain... can't list it all. But I'm still here, first diagnosed August 2021. My worst experience was the liver biopsy so if that's what you had I feel for you! Been hospitalised twice and lots of iv chemo, the care has been brilliant, I absolutely cannot fault the nurses and (most of) the oncologists... I'm on Enhertu now as I am hormone negative but HER2 positive. Praying for a long-lasting response.

Just live each day/week as it comes. Delight in the tiny things like a shaft of sunlight through the trees.

It's tough being a bit younger, I still have three kids at home, but we're getting through it as best we can. Trying to tap into their resilience!!

Anyway Sharon all the very best to you,

Lucy

[Sharonpat in reply to Ursula_I]

Thankyou Lucy I have to go on letrazole and inhibitors so a little worried as hears so much about side effects my ct scan has shown good response to the chemo and one of my bone lesions have resolved and the others are now skelorotic so they say there healing as has my breast and my lymph nodes it’s just my liver that is only very subtle and only detected on a pet scan that remains unchanged x

[Ursula_I in reply to Sharonpat]

That sounds really hopeful x

[Sharonpat in reply to Ursula_I]

Thankyou I certainly hope so the chemo makes me really poorly so I’m hope the medication won’t be as bad I’m here if you ever want to message me x

[Gingerann1]

Hi Sharon! Sorry you have to join but welcome to the group. As others have said, lots of sharing from women and some men all over the world dealing with this beast. I have been on this message board for 2 years now and have learned so much. The good and the bad are shared and everyone is encouraging when days are tough and celebrate with you when you get good news! It has been very beneficial to learn of side effects from our meds and ways to deal with them and help with suggestions of questions to ask our medical team. Stay in touch often. You will soon learn you are never alone on this journey. Big virtual hug. Lin

[Sharonpat in reply to Gingerann1]

Thankyou so much I got diagnosed in oct 22 and it has been an emotional rollercoaster it’s been so difficult indeed the chemo makes me really poorly for about a week each cycle and I hate it I just hope the medication won’t be so bad I had 3 bone lesions and 1 liver but they say iv had good response to the chemo and that the spine lesion has resolved itself and the other 2 are now skelorotic so means there healing my liver lesion is unchanged but they said it was only very subtle the breast and lymph nodes have shown significant improvement so they seem happy I hope things will continue to improve and the medication won’t be as bad as the chemo

[bikebabe]

hi Sharon - I’m a northern lass with spinal mets being treated for 16 mths with ibrance, Letrozole and denosumab. I get so much help, advice, and support from the wonderful people who contribute to this forum. It’s like we’re all holding hands.

[Sharonpat in reply to bikebabe]

hi I’m on densumab and chemo currently and I am going on to letrazole a bit worried as been told so much about side effects which I worry about as I get sick on chemo x

[bikebabe in reply to Sharonpat]

I can only speak from my own experience but the 16 mths on palbociclib, Letrozole and denosumab have been a walk in the park compared to chemo and I only had weekly paclitaxel. Everyone is different. I do have niggles which seem episodic ie muscles and joints esp shoulders, fatigue, unexpected bottom burps but these usually mild or blow over!

[Sharonpat in reply to bikebabe]

Thankyou that’s good to hear I certainly hope it will not be as bad as my chemo has been x

[mariootsi]

We are here for you. Welcome and keep posting.

[Sharonpat in reply to mariootsi]

Thankyou x

[Sharonpat in reply to mariootsi]

Thankyou so much x

[LibraryGeek]

Welcome Sharon! I am in Kent, 61yo and have had MBC for over 5 years in bones, then more recently lung and liver. I had 4 pretty good years on Letrozole and Ibrance then 6 months each on Ibrance/Fulvestrant and Capecitabine. Just had small progression so will be starting Exemestane/Everolimus. You will find lots of support and advice from the lovely ladies on this forum.

Jackie x

[Sharonpat in reply to LibraryGeek]

hi Jackie iv shown good response to my chemo in my breast lymph nodes and my spine has resolved itself and my other 2 bones are now skelorotic which they tell me means they are healing now only my liver lesion is unchanged but they said it’s so subtle and only dectable on a pet scan

I have to go on to letrazole so a bit worried about side affects as chemo makes me sick and bad nausea x

[LibraryGeek in reply to Sharonpat]

I really don’tthink you will have a nausea problem with these meds. I mostly had joint pain and fatigue as side effects and put on a lot of weight. Most of the ladies here have found this a manageable combo, hopefully you will too! x

[Sharonpat in reply to LibraryGeek]

That’s good to hear many thanks for your reply x

[lynzer]

I’ve been on Ibrance/Faslodex for 5 years. Just fatiqand bone pain but other that that tolerated. I’s love to switch out the faslodex injections for a pill. Super tough on my butt..

[bikebabe in reply to lynzer]

we need to be asking NICE to review the new oral alternatives to faslodex ie Elcastrant.

[Gingerann1 in reply to lynzer]

I hear you about those shots! Have had 48 of them. Just got 2 today. Talked to my Onc today about the new pills that were just approved but he won’t be prescribing them any too soon as there is no data on how well they work with the 4&6 inhibitors like Ibrance. Seems to me that would have been part of the trials before approval particularly because they are almost always prescribed with another drug. Also he mentioned that there are more side effects with the pills so even though my “hips” can use a break I’ll happily wait for more stats. Happy to report that I also had my 6 month scans yesterday and I am still NED (no evidence of disease) after 1 year! Yay! Will stay on this combo hopefully for a long time like you.

[lynzer in reply to Gingerann1]

ahhhh ok txs!!! Hoping to get on that provided the dara checks out!!! 🙏🏻🙏🏻🙏🏻

[Hidden]

Hi

[Hidden]

Hi SharonI have just joined this group too. I'm 66 live in Dorset in the UK. I only found out I had metastatic breast cancer last August after being admitted to hospital with shortness of breath. I didn't realise I had breast cancer as all my mammograms had been negative. My oncologist said I'd probably had cancer for 6 or seven years. The cancer has spread to my lungs, liver and spine. I started on Letrozole whilst I was in hospital, had palliative radiotherapy on my spine in September following an MRI scan, and started on Palbociclib in November but had to stop this due to a lung infection, restarted in December. I had to have a permanent indwelling pleural catheter fitted in November due to developing a pleural effusion. This does cause me a lot of pain especially when the nurses drain the fluid. I have just started having the Denosumab 4 weekly injection for my bones and have to take calcium and vit D3. I feel fine most of the time, I get very tired in the afternoons, have a very stiff neck and quite a bit of back pain if I stand or walk for too long. But it's all livable. This group is fantastic and I have learnt a lot. I take each day as it comes and don't plan too far ahead. I wish you all the best.

Sue

[Sharonpat in reply to Hidden]

hi sue I only got diagnosed in oct 2022 and I’m also on densumab I have 3 bone lesions but they tell me the chemo has shown a good response and the spine lesion has resolved itself the other 2 lesions are now skelorotic which they tell me means healing the liver lesion they say is unchanged but they said it’s only subtle and only detected on a pet scan my surgeon tells me the breast and lymph nodes have shown a big improvement so they want to leave surgery and put me on to letrazole and inhibitors x

[Hidden]

HiI'm glad you have had a good response to your chemo. It all sounds very positive. I wasn't offered any chemo or surgery, but have been on Letrozole since August when I was first diagnosed, and Ibrance since December. Fortunately I've not had any bad side effects. No sickness or nausea, although my taste buds changed when I first started on Letrozole, and a lot of foods were tastless, but thankfully they've returned, now I just get tired in the afternoons and get a few mouth ulcers. However, due to the nurses strikes, my cancer nurse being on leave, and then off sick I haven't had any scans since October when I had some radiotherapy so not sure how I'm doing. Hoping to speak to cancer nurse this week. I hope everything continues to go well for you and you don't suffer too many side effects.

Best wishes.

Sue

[Sharonpat in reply to Hidden]

many thanks sue it’s just the chemo makes me so sick it’s horrible so can’t wait till iv finished it I wish you well message me whenever you want to I’m here for everyone x

[stardust1965]

Hi Sharonpat

Welcome to the group. I’m in southeast England and just over four years into this. I got two and a half years out of Letrozole and Ibrance. My dose was reduced due to low neutrophils and fatigue but it works the same even on the lower doses. Expect mild aches and pains in joints as most seem to suffer from this. Overall I found it very tolerable and could get on with my life. If you’ve already had chemotherapy the next treatment should be much easier so try not to worry. Although much easier said than done.

By the way, it’s good to see the U.K. peeps on here. I’ve been a regular here for four years and so many have dropped away (for many different reasons).

Good luck with your treatment.

[Sharonpat in reply to stardust1965]

Thankyou so much I’m hoping it will be easier than my chemo has been I’m in Essex so it’s good to have others to talk to on here x

[Liessie in reply to Sharonpat]

it is so good to have people to talk to , I am in Middlesbrough the north eat of England

[Sharonpat in reply to Liessie]

yes it’s so nice to talk to others in this situation x

[Ntash01]

South West London

Currently on Vinorelbine…managed to dodge Taxol as I wasn’t ready for IV. In the middle of second cycle-dosage harsh and bloods haven’t been good but still functioning! I’m hoping it’s working none the less.

Nx

[Sharonpat in reply to Ntash01]

aww sorry to hear you have had a rough time I wish you well x

[Discocat]

Hi Sharon,

I'm the same age as you...originally from London but living in Cyprus now.

I've been on inhibitors (first Kisquali, now Ibrance) together with Letrozole and monthly Zometa IV and Zoladex hormone blocking implant for almost 2 years now.

I've not been offered surgery or chemo options since my diagnosis. I have wide spread bone mets from head to waist.

From what I've heard most people find the symptoms of IV chemo much harder than targeted therapies such as cdk 4/6 inhibitors. Mostly the biggest adaption is going into a sped up menopause...but in my experience it does get easier and symptoms are minimal now.... I feel pretty normal really, so don't worry it sounds like your doing the hard stuff now and it will be easier and more manageable soon when you get on the new meds.

Best wishes to you

Zoe

[Sharonpat in reply to Discocat]

Thankyou Zoe that’s good to hear I really hate the chemo makes me so poorly luckily iv passed menopause so they tell me but only just Thankyou so much for your reply you take care regards Sharon x

[Best521]

Hi Sharon. Fellow MBC thriver here from across the pond in the USA. I have never had chemo, however wishing you great success with the Letrozole and the CDK 4/6 inhibitors. The combination has worked well for me with minimal side effects. My life has continued almost uninterrupted, but with a little less hair. Good luck with everything. There are a great group of people here who will provide you with tremendous support and information.

[Sharonpat in reply to Best521]

Thankyou so much for your reply it’s good to hear Il be so pleased when I finally finish chemo is nasty and makes me poorly it’s good to hear it worked well for you I hope it will for me too xx