Forum Discussion
Kisquali
FYI - I did post in private group last night but no response so thought I'd try here as well. :-)
Hi there all,
Strange question for you all for a Sunday night - I'm on my 13th round of Kisqali, still on 3 tablets which is highest dose. I'm taking in combination with Letrozole and the bone strengthening injection every 2-3 months. I'm doing really well on this treatment combo and apart from ridiculously disgusting dry feet that are revolting and foot pain, nausea and tiredness, I can't complain too much!! Recent PET scan has shown that my bone mets are still present but not active according to oncologist which is amazing news apparently.
My question is, I think my hair is thinning out and I have a "sore head". Only way to describe it is it feels as though my hair has been up in a "tight ponytail" and scalp is sensitive. Of course, I will check with oncology nurse tomorrow but thought others might have similar experience that they could share. Can't ask anyone at home to check for bald patches as single mum here and don't want to freak my kids out totally - I think that was the hardest part of my original cancer journey for them when I shaved my head as it was all falling out from chemo.
Other question for musing this late on a sunday night is, are there others in this group on Kisqali or Ribociclib combo that have been told they are doing really well - I can't seem to shake the feeling that the PET scan got it wrong!!
Thanks in advance
Hi there all,
Strange question for you all for a Sunday night - I'm on my 13th round of Kisqali, still on 3 tablets which is highest dose. I'm taking in combination with Letrozole and the bone strengthening injection every 2-3 months. I'm doing really well on this treatment combo and apart from ridiculously disgusting dry feet that are revolting and foot pain, nausea and tiredness, I can't complain too much!! Recent PET scan has shown that my bone mets are still present but not active according to oncologist which is amazing news apparently.
My question is, I think my hair is thinning out and I have a "sore head". Only way to describe it is it feels as though my hair has been up in a "tight ponytail" and scalp is sensitive. Of course, I will check with oncology nurse tomorrow but thought others might have similar experience that they could share. Can't ask anyone at home to check for bald patches as single mum here and don't want to freak my kids out totally - I think that was the hardest part of my original cancer journey for them when I shaved my head as it was all falling out from chemo.
Other question for musing this late on a sunday night is, are there others in this group on Kisqali or Ribociclib combo that have been told they are doing really well - I can't seem to shake the feeling that the PET scan got it wrong!!
Thanks in advance
33 Replies
- I have just recently started on Kisquali and Fulvestrant injections.The first 5 days was horrendous, with severe diarrhoea ,tiredness and sickness. My Oncologist took me off it for three weeks and once again started on one 200mg tablet. I look forward to the weeks break but on commencing again still have a few issues until it settles. My hair is thinning and about to make the big decision to have it trimmed to a shorter style. I would like to have a colour change But a bit skeptical if chemicals in the hair colour would be safe.
I would like to stick with this treatment as I am now eighty three. Thirty five years is a life time to dealing with breast cancer and Iam hoping this drug will give me a few years more, - Hi Jacqui64,
I'm now on 2 Ribo per day alongside Anastrozole now. I haven't had any liver issues though so sorry I can't be of more help to you, sorry!!! I hope someone here can help answer your question but just wanted to say I'm now up to round 23 of it and feel pretty well, except for the ongoing manky feet issue!!!
Due to Covid, we dropped the ribo to 2 tabs per day back in late March so that my white cells didn't dip as low and it would hopefully be easier to fight off any covid nasties if I got it. Surprise, surprise, my hair started growing back at a rapid rate so when I had my review in June my oncologist said that as I'm so stable we could leave as 2 ribo per day instead of going back up so that my hair would continue to grow. I was a little concerned dropping the dose but she did say people generally didn't tolerate it, or are as stubborn as me, as long as i had so she was happy with reduced dose due to me doing so well. Am still on 2 tabs now and will review again in december with a pet scan to check on everything. Fingers crossed! Hope everyone is coping ok!
Hi Elisewjk. I'm in the middle of trialling Ribo, and a couple of my liver levels went out of whack in my blood test. I was on 400mg. I have to decide whether to change the medication completely, or whether to try 200mg. Did you have a similar reaction on the 400mg? I'm not sure how much of a difference there will be between 400mg and 200mg. I'm thinking I'd probably have to at least try it, or I'll always wonder "what if". Would love to hear your opinion if you don't mind. xxelisewjk said:Hi #joinmelb, I've been on the Ribociclib/letrozole/denosumab combo successfully since Nov 2018. I was Stage 4 de novo with bone mets in my spine. My tumours have shrunk significantly and spine mets is inactive/stable. I'm on the lowest dose of 200mg of Ribo's 3 weeks on, 1 week off. I would be questioning the dosage of Ribo's that you are on, it sounds like you have a few too many side effects. Perhaps discuss this with your Onco? I've been thru all the stages of 600mg and 400mg doses which didn't work for me, I've had varying/different side effects on both doses. 600mg 60% of people can't stomach at all, but its the protocol they have to follow to start you on. On 400mg, my neutraphils were still dipping too low (amongst other side effects), so I (luckily) finally settled on 200mg with little/bearable side effects and has been working very well so far. My hair has thinned a little bit (ie. some fall out more than normal), however it does continue to grow back and it certainly doesn't fall out in clumps. I have my hair cut short, and use thickening shampoo and conditioner. My friends tell me it looks the same as it used to, so it can't be too bad :smile: Big hugs and kind regards :)- Hi @wokeupthismorning, in with you about the skin my hands are dreadfully dry all the time and the skin peels off, yes hair is getting thinner especially right at the front, I’ve been on same combination as you since April, 2019, only difference is I’m on 600mg of kisqali. I try not to think about the Mets much, yes can be lonely sometimes especially when people don’t understand exactly what your going through, my last blood test the ca 15 had jumped from 62 to 82 so another blood test in a couple weeks time hopefully hasn’t kept going up, stressful time
- Hi :) I've been on Ribo/Kisq 400mg + Letrozole since Aug 2018 for lung and bone mets. Scans are good so far and progress seems to have halted! I've never had a PET scan, only CT and MRI.
My hair is VERY thin with bald patches. I'm 56 so that could have something to do with it. My joints are painful, especially hips. And skin is reacting to meds - burning all over and nerve pain keeping me awake.
I used to have nice feet...
MBC is scary and lonely. Glad to be on this forum. <3 - darling @Glynnis I hear you - our contract got cancelled in the first week of this pandemic so all non essential spending has gone off our list. I have the last polish slowly growing off so I will see what state my natural nails are in a few weeks!I hope you are staying safe at home like all of us in our situation - I have been housebound for two weeks tomorrow after a final family get together in Thredbo thanks to the OTIS Foundation who I found out about thanks to this BCNA website. Then two days later lost my job. Crazy times ladies! I hope we can all stay positive and thank god for these groups so we are not alone.Big love to you all out there xxx
- @Louweezer that's good to hear, unfortunately can't afford to do, ive taken myself out of work on sick leave due to the low immunity involved with these meds but great to know for future reference. 😀
- Absolutely!! Oh and @glynnis I have the horrible messy and thin nails as well - I have started getting an SNS manicure which thickens up my nails and stops them breaking. Yes, the SNS thins your nails as well but I have had it put and taken off since Dec 19 and I still have fingernails!! A small win but a win nonetheless!
- Wicked senses of humour are very very necessary at the moment!!! Take care all!
- Hello! I was diagnosed with de novo stage 4 with spine mets in December 2018. I started ribococlib/letrozole/denosumab in January 2019. I had the spinal tumor removed and radiation in Dec/Jan 18. I was having a monthly Zolodex injection to suppress my ovaries but had them taken out in May 19.Thank you all for sharing your side effects - as well, I just thought my feet had gone horrible and peely dry but now I know that is a side effect - thank you! My hair fell out quite a lot early on but I had thick hair so it just went kind of thin. Now I have, as my hairdresser calls it, baby hair growing out all over. I have crazy weird side burns that I can twist so they are standing out horizontally which is a good look!I also had amazing results from my last PET scan earlier this year. The breast tumor has shrunken considerably and the spots in my lungs have gone down and my spine is stable. There are a few spots left there which they could mop up with more radiation but I am managing the pain so we are leaving that be for now.
The tiredness/fatigue is the main problem, and the pain from sitting or standing too long.It’s just good to hear from other people in the same position and realize all the lumps, bumps and dry feet are ‘normal’.@joinmelb I also have a very wicked sense of humor - it has got me through 48 years and hopefully a few more!!
