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Kisqali [ribociclib]

67 REPLIES 67
Member

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

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

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

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

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

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

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

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.
Highlighted
Member

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

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

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

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

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

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

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


Member

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

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

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

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

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.

Member

Re: Kisqali [ribociclib]

Hi everyone, is Kisqali(ribociclib) available to anyone with sencondaries or is it just first line like palbociclib.

i'm running out of options here.

hugs to all

Ramade

Member

Re: Kisqali [ribociclib]

Hi Kisqali crew.
I hope you are all okay.
Sammy cat, how was your 1st day at work
Lulu, it is a shame you only get physio 0nce every 2 weeks..have you tried tai chi?. It is very gentle.

I am now back in UK after a fantastic week in Greece. Even needed only1 stick for most of the time, except for long walks..
All went better than expected, even went swimming in the sea.
Ate all sorts of food with no abdo pain.
It was all good.

Gina x
Member

Re: Kisqali [ribociclib]

Hi sammycat and Gina,

Gina hope you have a relaxing holiday. Physio would be a lot better sammycat if it wasn't timetabled for once a fortnight! The exercises are good but use equipment so not sure what I can adapt for use at home. I'll need to ask this.

 

How did your morning at work go sc? I've been off work for a year (generous sick pay) but am taking an enhanced redundancy payment to leave.  Really sorry to go but even without "adjustments" I wouldn't be very effective. Luckily I have some pensions to live on and will definitely be around to get my state pension in 18 months. I've worked since I was 16 (64 now) and don't want to miss out on all those contributions!

 

Keep going girls Smiley Happy

 

 

Member

Re: Kisqali [ribociclib]

Hi funny face,

There has been limited research on the significance of PR negative, the results of the research indicated that ER positive  PR positive do better on hormonals than ER positive PR negative. Having said that I’m ER positive (8) and PR negative and have extensive bone mets. I’ve just had 3 and half years stable on Exemestane alone so feel that’s a good response to hormonals

with love 

xxx

Member

Re: Kisqali [ribociclib]

Hi Gina and Lulu

Great to hear from you both. 

Have a lovely time in Greece Gina. It will probably do you the world of good. I would love to go away but could not even sit in the car long enough to get to the airport!!

You both seem to do well on the ribiocilib. I can't understand why more ladies are not on it??I am on day 10 of my 4th cycle now. I don't feel too good today as had bone scan today and lying down for ages is so painful!

How is your physio going Lulu. I think it does help the spine a lot doing exercises for core strength.

I'm going back to work tomorrow just for the morning to see how I get on. Not been in since January so will have forgotten everything!

Have a lovely holiday Gina. Let us know how you got on when you are back

x

 

Member

Re: Kisqali [ribociclib]

Hi Lulu, Sammy Cat and other ladies in Kisqali
I have started 3rd cycle today.
Neutrophils were 1.3 when I saw Oncology last week.
So far I am doing okay and looking forward to going to Greece on Wednesday, although a little frightened. I have my 12yr old daughter with me
Thankfully I know thessaloniki well as my mother is from there. I will be staying with a friend whom I have known for over 40yrs.
Mobility, I still use 2 sticks ( have bought a trendy
Pair).
I found that Tai chi has given me some if my confidence back.
I look forward to hearing from all you lovely ladies.
Take care
Gina x


Member

Re: Kisqali [ribociclib]

Hi sammycat and all other lovely ladies,

don't worry about your blood tests showing neutrophils are too high for the next batch of kisqali. I'm on my sixth round and only once have I had a good blood result and been given the medication. I've been taken 600 mgs (3 tabs) every cycle and noticed you only have 400 mgs. Double checked instructions on the box and realised I should be only taking 2 tabs a day! I will have to ring a cancer nurse tomorrow urgently! No-one pointed out that it was being reduced!

 

Back specialist couldn't offer any suitable operation unfortunately. Basically spine is too riddled with lesions and strengthening one part of the spine will only create probs in another area. I'm being measured for a back brace though. Not sure how that will work as just wearing a bra can be uncomfortable and often have to go without. 

 

I am starting 1:1 physio tomorrow to strengthen core muscles which should help in the longer term for supporting my back. I'm quite bent over by the end of the day but would like to avoid any mobility aids for the time being.

 

I've stopped losing weight now and know what you mean about forcing food down!

Thank goodness for the rain today ;-)

Member

Re: Kisqali [ribociclib]

Hi Gina

 

Yes I am on denosumab plus adcal. Have injection every 4 weeks but it will be 6 weeks this time as kisqali was started late. I was not aware it helped with the pain! I will be keener to have it next time!

I have decided that when I see my Onc. at end of month I will be brave and ask more questions! We have just been to coast for 3 nights and yesterday my bone pain was horrendous but today I feel great!! Even with the longish drive home. Don't understand this crazy disease!

Hope you have your holiday in Greece coming up very soon.

It's so good to be in touch with you!

x

Member

Re: Kisqali [ribociclib]

They really help with the pain.
But oncologist must also give you adcall or calcichew.
Member

Re: Kisqali [ribociclib]

Hi Sammy Cat.
Can keep ask you, are you on Zolendronate or any other bi-phosphanate IV or oral
Or Denosumab injection.
Please ask your oncologist if you are not on them.
Gina x
Member

Re: Kisqali [ribociclib]

Hi Sammy cat.
So good to hear from you but I feel your Oncology team should listen to you more..
Don't be afraid to bang heads and ask for your scans to be reviewed by bone specialists if you are not happy.
I am under the RNOH as well (google the acronym).
At moment they are monitoring my progress.
I have to say that the crutches have been brilliant.
Take care.
Keep cool. I believe that rain is forecast later on this week.
Gina x
Member

Re: Kisqali [ribociclib]

Hi Gina

I have seen Orthopaedic Consultant and Pain Management Consultant and they have no answers as the pain is at the base of my spine and my bone cancer is in the thoracic spine. I read a report from an MRI I had a few months ago and it said that I had extensive mets. in pelvis. When I asked my Oncologist about this he said it was nothing!!! Just don't know who to believe so when I see him on 31st August after my bone scan and CT I will ask for him to tell me honestly! I'm scared to but feel I should. If all is still under control then I am returning to work 3rd September after 9 months off. Just want to feel a normal person again!

I'm so pleased you are going to Greece. I'm afraid I have cancelled 3 holidays in Lanzarote as they told me the hospital would not be able to deal with any emergency like neutropenia so we think we will book Tenerife in November. So nice to have something to look forward to.

I keep drinking!! I have a dry mouth all the time so it's no hardship.

Have a lovely weekend x

Member

Re: Kisqali [ribociclib]

Hi Sammy cat
I am glad that you are back on the Ribociclib.
Can I ask, is your pain cancer related or is it something else chronic? .
Mine is cancer related and no not taking anything strong just ibuprofen /paracetamol occasionally.
I have been allowed to go to Greece for a week so am excited but a bit anxious as well.
I think you are right we seem to be all alone.
Good to hear from you.
Keep active. Keep drinking (fluids).
Gina 🌻🌻



Member

Re: Kisqali [ribociclib]

Hi Gina. Great to hear from you. You sound as though you are doing really well. Had my results yesterday and neuts. were up to 3 so collected my tablets today. I am still on 400 mg. I am like you and can walk for miles but sitting is awful unless the chair is hard and even then I can only sit for about 10 minutes but I won't take opioids so suppose I will have to put up with it!! Do you take any painkillers?

Your community garden sounds a lovely idea. Make the most of it while the weather is so good.

Keep in touch as I really appreciate hearing from someone on the same medication. Can't find anyone locally that takes it so I presume we are lucky???

Enjoy your garden

Member

Re: Kisqali [ribociclib]

Hi Sammy .
So far okay.
Have you got your results back?.
Seeing Oncology next week for 2 weekly review.
Still on crutches to keep weight off hips, have minimal pain but have to be careful where I sit.
But am able to walk for miles.
Spent afternoon at community garden, where I volunteer. It was lovely, if I couldn't go back to nursing it wouldn't be the worst thing.
I feel so energised when I am there and could get into horticulture!
Seeing Orthopaedic team at end of August.
They will probably want another scan..
Take care and keep hydrated
Gina 🌻🌻
Member

Re: Kisqali [ribociclib]

Hi Gina

How strange I was thinking about you and up you popped!! I have been off ribiocilib for 15 days now as neutrophils were under 1. Had 2 blood tests with no improvement and just had 3rd this afternoon. Waiting to hear if I can collect my tablets tomorrow. I don't feel any different when I don't take them which just goes to show what a big part your mind plays in all this!! Still have my horrible back pain. Have CT and bone scan at end of August so will be scared when I see Oncologist for results!!

How are you gettiing on with it and when are your next scans etc. So comforting to know someone else on it. I love the fact it is cooler now but see heat is returning! 

Member

Re: Kisqali [ribociclib]

Hi Sammy Cat and anyone elseen on Ribociclib
How are you now?.
Are you coping well with the weather?
Gina G.
Member

Re: Kisqali [ribociclib]

Hi Lulu

I was wondering how you are getting on? Have you seen anyone about your back pain yet and if so what can they do for it? I can't find any solution for mine but have now been booked for epidural at the end of August. I can walk for miles but sitting and lying down is incredibly painful so I am constantly exhausted. I can't tolerate opioids so have to put up with it.

I have just finished my 3rd letrozole/kisqali treatment. Had bloods yesterday but was rung today and told that I had  to be off kisqali for 2 weeks as wbc 1 and neuts 1. How are you getting on with it? Iwas down to 2 tablets this time and it still had a bad result!. Do you take 3 tablets? Are you managing to put any weight on? It's so difficult. I force food down all day and in 9 months have only managed to put 1 pound on!!

Hope you are enjoying the weather. Too hot for me!

Hope to hear from you. 

Member

Re: Kisqali [ribociclib]

Hi Sammy cat.
My neuts were 2.1.
I am enjoying my week off.
It is good the weather has called down a bit..
Take care abd enjoy the days you feel well.
Gina xx
Member

Re: Kisqali [ribociclib]

Hi Gina

Great that you didn't have any problems. This month I have been much better and I am beginning to think it is the letrozole that is causing my aches and pains. How were your bloods after the 3 weeks? I go next Tuesday for my bloods and my neuts are always about 1 which is quite worrying. Do keep in touch snd carry on enjoying your greenhouse!!

Member

Re: Kisqali [ribociclib]

Hi Guys.
Have just finished 1st cycle of Ribociclib.
It was okay. Nothing too bad to report.
On my week off..
Are enjoying the warm weather?.
Keep hydrated and graze throughout the day.
Gina x
Member

Re: Kisqali [ribociclib]

Also I think we are told to take them in the morning so they become part of a daily routine Not because of any clinical reason..
I am continually sipping on fizzy water/ginger ale, which has kept the the nausea away.
Also it is so good that you are able to walk and get out and about..
Gina 🐞
Member

Re: Kisqali [ribociclib]

Also I think we are told to take them in the morning so they become part of a daily routine Not because of any clinical reason..
I am continually sipping on fizzy water/ginger ale, which has kept the the nausea away.
Member

Re: Kisqali [ribociclib]

Hi SammyCat.
I am still ok.
I take my Meds around 10:30-11:00 in the morning with toast.
My white cell so far has been ok..
The Letrozole I take in the afternoon.
I am enjoying the sun and being in the green house.
So far so good.
I am glad you are back on them.
Have a good week.
Gina 🐞
Member

Re: Kisqali [ribociclib]

Hi Gina

Just wondering how you are getting on with the new drug? Were your blood results ok on Wednesday? I am now 6 days into my third lot and only taking 2 tablets. I tend to feel sick and strange about an hour after I take them but it passes. I have started to take them later in the day as I have been on the american site for ladies on this drug and a lot of them say to take it in the evening as you then sleep through the worst part! I was wondering if you know a reason why we are told to take them in the morning?? A lot of them are also complaining of hair loss but touch wood mine is still growing back well after my intravenous chemo which ended in Feb.

Hope you are enjoying this beautiful weather. I walked for miles this morning as its the only thing that keeps my back from hurting!

Member

Re: Kisqali [ribociclib]

Hi Sammy Cat.
Hope you manage to get away for a bit..
I am due to have bloods on Wednesday, as I have only just started the treatment.
Will be in touch by end of week.
Take care and try and get out even if you need to cover up a little.
Gina
Member

Re: Kisqali [ribociclib]

Hi Gina

 

That is brilliant! I have delayed taking my next lot as my neuts were 0.5 and I felt rubbish. I also want to go away for a couple of nights from tomorrow and don't feel safe driving strange places as they make me very slightly shaky! Be really interested to hear your blood results after the 3 weeks. I seem to have one good day and then the next day is rubbish again. Just shows how different we all are. I would love to enjoy the beautiful sun but don't feel confident without my wig and it is so hot and annoying!! Wish my hair would hurry up and grow! It looks delightful at the moment ! Its all black and white and frizzy! Where did my blonde straight hair go??

Thinking of you

Member

Re: Kisqali [ribociclib]

Hi guys.
I have almost completed my first week of Ribociclib.
I feel okay.
I take around 1030 each day with food.
I eat a little and often, but am surprised how much I do eat.
I sip on fizzy water and lemon throughout the day, occasionally with ginger cordial.
I can take in about 1.5l in a day.
I even went to a party last night and allowed myself a small glass of wine.
I hope ladies are out enjoying the sunshine and the Vitamin D for our bones .
Have a good weekend.
Gina xx
Member

Re: Kisqali [ribociclib]

Hi nicky08, thanks for jumping in. I think you've confused my initial first post and thought it was an equally long 2nd post from me.

 

Thanks anyway

Community Champion

Re: Kisqali [ribociclib]

Just jumping in here even though I’m not on these drugs.

Lulu - your earlier more detailed, and edited, post is just below one of FF’s, so all that typing hasn’t gone to waste!

FF - I have understood from the beginning of my mets ‘experience’ that if you are PR+ (as well as being ER+) you are likely to respond better to hormonal treatments. I don’t think it makes a difference to what treatments you get as they are based on your ER receptors but as to how effective they might be.

Sending hugs to all you ladies starting out on these treatments, some of the SEs seem difficult to cope with and hoping all of you who are having any type of pain mange to get something sorted as all of that is so draining both physically and mentally.

Nicky x