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Kisqali [ribociclib]

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!!