Member
Posts: 29
Registered: ‎15-06-2018

Re: Kisqali [ribociclib]

Thanks Sammy cat.
Tomorrow is the last day of cycle 3.
So looking forward to my week off.
Seeing Dr this week.
I feel relatively well in myself and I have to say that the Tai chi classes at the Mulberry centre have been a God send.
I am able to mobilise no crutches at home and only one when I am out and about. However my sofa kills my back. So tomorrow I am off to DFS in New Malden then to one of the many Korean restaurants that are found in this part iof South London.
Enjoy the autumn sun.
Gina xx


Member
Posts: 29
Registered: ‎15-12-2013

Re: Kisqali [ribociclib]

Hi Gina

So pleased you are doing so well! Congratulation on the award! I know what you mean about being involved in someting you enjoy and all thoughts of cancer just disapear. I also think that we have now had time to come to terms with it so that we now enjoy each day. I have been back at work for 3 weeks and loving it. I only do 5 hours 4 days a week but just lovely to be involved with 'normal' life again despite the back playing up!.

Do you have scans every 3 months? I was hoping he would say 6 months this time as I feel all the radiation cannot be good!!

I still feel unwell at the end of my three weeks of tablets but yippee I now have week off and then onto 6th lot

x

Member
Posts: 22
Registered: ‎16-09-2018

Re: Kisqali [ribociclib]

HI Sammy,
I’ve been on ribociclib with Letrozole for the last 13 months. It hasn’t been too bad. I take all the meds in the morning before breakfast. I get a little diarrhea about 2/3 times maximum a day. My skin, mouth has a tendency to be dry.
If I delay eating after the medication then I have nausea but if I’m careful it’s ok. So far Dr says CT scans show no new developments so he’s happy. He feels my side effects are minimal.
Initially my blood and heart were checked regularly for the first 4 cycles as there is some concern that ribociclib affect the blood count and affects the heart. After 4 cycles if it doesn’t affect the heart then it won’t. At least that’s what my doctor said.
Member
Posts: 29
Registered: ‎15-06-2018

Re: Kisqali [ribociclib]

Sorry hadn't finished my sentence.
I completely forgot my cancer as my colleague and I went to collect course awards (without my stick).
It was a great moment.
Gina
Member
Posts: 29
Registered: ‎15-06-2018

Re: Kisqali [ribociclib]

Hi Sammy Cat and Kisqali ladies.
We are all facing different futures but I feel that we at least we can make plans.
I am now on cycle 3 of Ribociclib and it's been okay.. I am not sure if I will go back to nursing but I have recently revalidated, which has given me hope.. I have been òut and about nearly every day.
Today went to London in Bloom awards and our community garden won 2 awards. I
Member
Posts: 22
Registered: ‎16-09-2018

Re: Kisqali [ribociclib]

Hi Sammycat01,

Yes it’s nice to hear that you are not the only one experiencing the symptoms and sometimes when the Dr poo poos your remarks I wonder if it’s me being paranoid or he being too casual. I know that my symptoms maybe mild in comparison to others but it’s always at the back of my mind what if....
I was clear of cancer for almost 10 YEARS! Sometimes I can’t believe it’s back!! I start wondering if I did something wrong or should have done more... I just want to bury my head in the sand and pretend it’s not there.
Does anyone experience any hip pain? It makes me wonder if it’s come back to my hip. My bone metastasis was at my shoulder.
Yes keep in touch and I’ll remember you in my prayers. Take care all. Cheers
Member
Posts: 29
Registered: ‎15-12-2013

Re: Kisqali [ribociclib]

Hi Annmat

Glad you to have dry mouth. I totally agree with you about not being able to taste salt. I have been so dry that I constantly drink water for my mouth and have now caused low sodium levels in my blood!! It's all such a joy. It's great to compare notes with others.

I saw on another thread that you were asking about PET scan. I would also like one as all my aches and pains are always dismissed as nothing! Keep me posted about your progress

Member
Posts: 22
Registered: ‎16-09-2018

Re: Kisqali [ribociclib]

I’ve been on ribociclib since August 2017. I was diagnosed with breast cancer 2007. Now with bone mets diagnosed in 2017 April.
Member
Posts: 22
Registered: ‎16-09-2018

Re: Kisqali [ribociclib]

Hi yes I too experience very dry mouth and there is tiredness but the tiredness got better after a few rounds. I am careful to eat after taking the medication as I feel nauseous if I don’t eat quickly. Now though my taste buds don’t work too well n don’t taste salt to well but it’s on and off.
Member
Posts: 29
Registered: ‎15-12-2013

Re: Kisqali [ribociclib]

Hi Gina and Kisqali ladies

I have been back at work for 1 week and finding it very hard!!! The main reason is my back is torture and sitting down doing admin work is very difficult! I'm also getting very stressed as I feel I am letting my colleagues down as working in a hospital is so manic. Have you thought about going back Gina?

Ramade I do hope everything works out for you. Lulu -How are you getting on?

The Kisqali makes me feel very weary and my mouth is sooo dry! Does anyone else feel like this?

Gina you seem to be getting on very well with it. What were the results of your Consultant appointments in August? so many questions!! xx

 

Member
Posts: 29
Registered: ‎15-06-2018

Re: Kisqali [ribociclib]

Hi Guys..
Firstly, a big hug to you Ramade.
And Sammy Cat how are you coping at work.
Good to know you are responding to the Kisqali,although you may not be feeling it's benefits..
Hugs to you both.
Gina xx
Member
Posts: 217
Registered: ‎30-03-2017

Re: Kisqali [ribociclib]

Hi Samm, well good and bad, no spread in organs but spread in soft tissue, they are going to do an mri in the next few days and then we'll see what treatments are left, if any. i would feel much better if i could meet one other person who has breast cancer spread to soft tissue because i feel really alone in this.

love and hugs

Ramade

Member
Posts: 29
Registered: ‎15-12-2013

Re: Kisqali [ribociclib]

Hi Ramade

How were your results today? I was thinking about you as it's such an ordeal. I had my latest results last Friday and got so worked up about them. Oncologist said that at the moment he feels I am in remission as long as the Kisqali and letrozole keep working . I had made up my mind to ask for specific information but chickened out!! I still feel rough all the time so my mind can't quite believe it. Do so hope your results were all positive.xxx

Member
Posts: 217
Registered: ‎30-03-2017

Re: Kisqali [ribociclib]

Thanks Gina, had a great weekend with all our children here and 3 baby grandchildren which definitely takes your mind off bad things. Scan results Thursday. Hope all is well with you. love to all

Ramade xx

Member
Posts: 29
Registered: ‎15-06-2018

Re: Kisqali [ribociclib]

Hi Ramade and Kisqali ladies.
I hope you are all okay.
I can't believe that your secondaries were not reviewed properly until 2011.
I believe that Doctors are like sheep and if one says it's okay then they all go along with it.
It happens too often and yet they don't like theit judgement being questioned.
As far as we are concerned it is part of theIr occupational remit to get questioned by patients. They are not God.
I hope you are managing with every day activities and can find time to do the things you like.
Have a good weekend
Gina


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Member
Posts: 217
Registered: ‎30-03-2017

Re: Kisqali [ribociclib]

Thanks Sam, will do,let me know yours too. What a nightmare this is for all if us

love and hugs

Ramade

Member
Posts: 29
Registered: ‎15-12-2013

Re: Kisqali [ribociclib]

Hi Ramade

That is dreadful that you were told the wrong results!! I must admit I have lost faith in the medical profession even though I have worked in NHS and now in private medicine all my life. Each Consultant I see has interpreted my scan results differently. I now just listen to the Oncologist and hope he is right!!

I to will be having scan results very shortly. Awful waiting for them. Do let me know what yours are . Fingers well and truly crossed for both of us x

Member
Posts: 217
Registered: ‎30-03-2017

Re: Kisqali [ribociclib]

Hi Sammycat, thanks for your response, i thought that might be the case. it's more than annoying because every other country in Europe offers these treatments. Anyway we've decided to sell our house and buy a smaller one so we can pay for the course.

i had primary in 2000, secondary symtoms in 2007 but all gps said it was not cancer, thanks to a new young gp in 2011 i had scans which showed that it was cancer and that the previous scans of 2007 had clearly shown it aswell. so a word of caution here to all, you know when it's come back so keep on pressing.

so i lost a vocal cord in the process. now i have extensive bone cancer and in the soft tissue across the chest and in lymph nodes. i did change hospital and they are wonderful, there have been no further mistakes.

Have been on letrozole,exemestane and everolimus, 3 diifferent lots of chemo, now tamoxafen. Have ct results in 10 days.

hugs to you

Ramade

Member
Posts: 29
Registered: ‎15-12-2013

Re: Kisqali [ribociclib]

Hi Gina and Lulu

I had been wondering how you were getting on in Greece. Sounds like a great success. So glad you enjoyed it. Obviously the sun was good for your aches and pains if you only used one stick! 

I go back to work on 3rd September but have been in a couple of times and found I was exhausted after about 3 hours!!! Do either of you feel really tired on this drug? I have never experienced tiredness like it as I have always been fit and active and never been able to sit still!! I just hope it is normal as you tend to read all sorts of things into it!

Hope the Physio goes well but that just isn't enough is it?

I have been playing tennis again and although I really pay for it with pain after it's worth it to be outside with my friends feeling normal [if not breathless!]

Do keep in touch and think of me next Friday when I go for my scan results! x

Member
Posts: 29
Registered: ‎15-12-2013

Re: Kisqali [ribociclib]

Hi Ramade

I am told that is first line like palbociclib. So sorry to hear you are running out of options. I have had 4 courses of ribociclib and will find out next Friday if it is working or not. What a roller coaster we are all on. Life just seems to be worry from one scan to the next. Difficult to live in the moment as people who do not have this are so fond of saying!! What is your history so far if you don't mind me asking?

All the best to you.