Letrozole/Palbociclib

[bernies20]

Thanks Micky, much appreciated.

I’m here too….. hope you have a good day.

Bernie x

[micky53]

Morning Bernie

good luck for the 21st. 
Positive thoughts flooding your way.I’m here if you need me. 
sending hugs

micky

[micky53]

Good morning Lisa

how are you feeling today?

im just starting my 7 month of treatment and tbh, so far, it’s not been to bad. If you need to chat or rant or just ask a question, don’t hesitate. There is no wrong question, feeling, emotion etc

Just having someone to talk to who really understands where you are on your journey is the best medicine ever. You are never alone

sending hugs

micky

[bernies20]

Hi Lisa,

It’s very early days, no wonder you feel emotional. I spent the first few weeks feeling bewildered by everything- the diagnosis, tests, phone calls and all the waiting….

I found that once there was a treatment plan sorted, I began to feel more settled and into some kind of routine.

My treatment is palbociclib, letrozole  and denosumab. I’m almost at the end of my 9th cycle, and I have found that the side effects have settled down as time has passed, so that I can get on with my day reasonably well. 
I know its different for everyone, but so far so good…..🤞🏻
I hope that you will feel better as time goes by. Sending you love and positive thoughts.

Bernie x

[bernies20]

Hi Micky,

Wishing you well for your call on the 28th. I have a call on the 21st, don’t think I’ll find out much this time, but at least I can ask some questions!

Look after yourself.

Bernie x

[kittykat0911]

Hi everyone,

This is my first post as I was only diagnosed 2 weeks ago and have just started treatment.

I just feel so alone and emotional with the news. Would really love to hear some positive stories about how treatment is going?

Thanks

Lisa

[micky53]

Hi Bernie

Its great news that your treatment is going well. Im not sure how mine  is doing as they dont really tell me much on my monthly oncology call. I will endeavour to change that when they call me on the 28th.  I know one of my liver tests is high but as its only one they are not that worried.  I am here whenever you want to chat or rant and that goes for anybody on here.  Take care. 

Micky

[bernies20]

Micky53, I know what you mean about the challenge of staying positive, I have been struggling recently, and am just trying to take one day at a time. One thing that keeps me going is that so far my treatment seems to be working well, and also there are other options available, with lots of research into new treatments too. 

I really hope that you will hear about counselling soon, waiting is hard isn’t it?

Sending positive thoughts your way.

Bernie 

[micky53]

Thanks Bernie for replying.

just sat at work feeling as sick as a dog reading your reply. Its nice to speak to someone else who is going through the same thing as myself. I asked about counselling several months ago but am still waiting to hear anything about it. I know these things can take some time. 

Just reading the replies on here has made me feel less alone. 

Your right about the shock of the diagnosis.  I was diagnosed in april and tbh it was a whirlwind from then on. It certainly took me a while to process it all. Then to be told in june that it had gone into my bones and the only thing they could do was to make me as comfortable as possible. Ive got up to 5 years, so am trying to make the best of it all, but there are days like today, when you are feeling awful that being positive is a challenge!! I try to keep myself busy but constantly feeling fatigued is not helping. 

[Liz0418]

It can be a lonely and isolated journey more so with covid19 in the mix. I'm on palbo and letrosole for past 3year and a half years plus with secondaries in lungs pelvis and base of spine 6 tumours in total that were all more than 1cm now all smaller or stable just had scan results and now getting 6 monthly scans in place of 3 monthly and tumour markers in between. I did a few online zoom chats on here with fellow secondary people which was helpful. I have never been offered macmillan support or any other therapies but have eventually processed it and realise this is a treatable condition although not curable so focus on the treatable part. Was so happy to have stable results last week as 2years ago had horrible pelvic and back pain which is now under control so feel so much more positive.  With the inevitable ups and downs.  Sending love hugs and positive vibes Liz

[bernies20]

Hi micky53,

I am so sorry that you are feeling so alone at the moment. 
Like you, I’m fairly new, and have only posted once before, but when I read your post I knew I needed to reply. I am also on palbociclib and letrozole plus monthly denosumab, and am on my 9th cycle, so just ahead of you. I don’t know what to say to make you feel better, but I can identify with how you feel. It is such a shock to receive this diagnosis, and there is so much to come to terms with, as well as the treatment, appointments, scans etc. It is no wonder you feel the way you do, and you are certainly not alone.
Is counselling an option for you? I had some sessions through my local hospice, and found it very helpful. It was a relief to talk to someone, and it helped me to see a way forward, although sometimes easier said than done….. Also, others speak very highly of the BCN nurses, perhaps you could consider giving them a ring. Yes, the professionals are busy, but your wellbeing is important, and they will listen I’m sure. I am sending you lots of love.

Bernie

[micky53]

Hi everyone. I’m new to this forum and decided to sign up when I saw your comments about palbocyclib and letrozole. I to am on these drugs. actually I’m just about to start my 7 month. I have no one to talk to about how I’m feeling emotionally, mentally or physically. I don’t want to bother the professionals as they all seem so busy. Can I hear about other peoples experoences, so I don’t feel like I’m battling this horrible disease by myself. I’m feeling very isolated and alone atm.

many thanks

[Lambin]

Hi Liz

i am also on both of these meds. I have switched to taking the Palbocyclib at night and I feel a lot better now.

i also go for the siestas most days. I am making myself go for a short walk most days - even though I don’t always want to- but I feel so much better for it. We have to listen to our bodies.

sending hugs to all you ladies

[Michy1]

Hi Karen,

Thanks for replying. Have eaten a bit better today but still not loads. Am on sickness from work don’t know how they expect you to work with this. 

Michelle X

[karen1965]

Hi I have just finished my first 2 weeks of palb so this is my week off still taken Letrozole .like you have gone off my food have lost about 6lb in weight but I have got a bit of surplus on me lol but try to eat little an often very hard when I just feel sicky . Have been suffering with achy joints ,dry eyes ,diaorrhea an can get very tired a lot of the time .I’ve got anti sickness meds eye drops an just try to have a little nap if I can this is so unlike me but I have to tell myself Karen you have to listen to your body . I’m glad I have read your comments as it has made me feel better that the side effects are the same as you , you always wonder if this is happening for others so thank you for posting . This is such a scary time but it gives us hope when you hear of shrinkage an people saying it’s a good combo makes the side effects worth going through .Good luck an let’s hope things settle down for all of us xxxx

[karen1965]

Hi I have just finished my first 3 weeks of palb so this is my week off still taken Letrozole .like you have gone off my food have lost about 6lb in weight but I have got a bit of surplus on me lol but try to eat little an often very hard when I just feel sicky . Have been suffering with achy joints ,dry eyes ,diaorrhea an can get very tired a lot of the time .I’ve got anti sickness meds eye drops an just try to have a little nap if I can this is so unlike me but I have to tell myself Karen you have to listen to your body . I’m glad I have read your comments as it has made me feel better that the side effects are the same as you , you always wonder if this is happening for others so thank you for posting . This is such a scary time but it gives us hope when you hear of shrinkage an people saying it’s a good combo makes the side effects worth going through .Good luck an let’s hope things settle down for all of us xxxx

[Michy1]

Hi,

Is the week off Palbociclib easier, than the 2 weeks on it?

Michelle X

[Michy1]

Hi Cathy,

Thanks for replying. Was sickly last night but a bit better today. Didn’t expect the back pain. Made myself get out of bed today. The fact that you’ve had shrinkage spurs me on. 

Michelle X

[cathyb9]

Hi Michelle I’m on the same as you, I get the odd feeling sick, lots of headaches, and joint pain, but I make myself eat - bananas are good and I drink gallons of water. 
I also eat trail mix and nibble throughout the day. I find if I stay in bed I feel worse so crawl out feeling very sorry for myself and make a cup of tea - then go into my garden which makes me feel better.

Rest when you can though, as I think I can do it but my body says please stop.

I gave been on this combination since March and and have had considerable shrinkage so it works very well.

take care

cathy

[Michy1]

Hi Liz,

Thanks for replying. Have just eaten a bowl of berries so at least something. Got 2 different drugs for sickness and diarrhoea, been taking the sickness one. Have just shopped and got a load of healthy salad food, so should eat something as light. May take my Pablociclib a bit later on as take in just after tea a moment.

Sending hugs and kisses back.

X

Michelle

[Liz0418]

Hi Michelle Liz here again I found I had nausea and diarrhoea initially with palbo was on 125mg dose but got lanzoprazole for symptoms which helped. I take my palbo at night also you should drink plenty water. The letrozole can give you joints pain but I find gentle exercise helps . I think it takes your body a bit to adjust to meds so rest when you are tired also the emotional side is draining and tiring . Try little and often for food and I defo find I have gone off certain foods but try to eat as healthy as possible. Sending love and hugs and I'm a great believer in siestas xx

[Michy1]

Hi,

Just started the combined drug therapy letrozole/palbociclib on Friday. Have been in bed all weekend with tiredness, pain (though this seems to have decreased today), and feeling nauseous. I haven’t eaten much since starting the drugs. Is this normal? I can live with the night sweats.

X

Michelle.