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
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
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
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
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 ;-)
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!
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
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
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!
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.
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!!