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

Just thought I’d update you all. My hair started falling out in massive clumps last week. I have bits of bald patches everywhere. Had a few major tantys and meltdowns as no one appeared to be listening to how bad it actually was and kept saying thinning hair was normal. I kept saying not to this extent!!!!! I’ve ended up getting a wig this week so I can continue to “fly under the radar” as they say. I’m a teacher and I’d prefer parents and kids not to know as well as wider community. I’d prefer to keep it to myself and close friends and work colleagues for as long as possible. Like I have explained to others, yes I quite proudly shaved my head last time when I had chemo but there was an end point at that time. This time there is no end point and I can’t see the hair getting better any time soon. Once people see thin hair and headscarves I’m going to have to tell people and I’m just not ready for that just yet! Once I had my meltdown to all who would listen it appears that they’ve never seen it happen so rapidly or so extensively, so drug company rep is looking into it, breast care nurse is on the case as is my amazing naturopath. Wig is very hard to get used to but I’m trying. Have had full bloods done but have only heard back that my iron and vitamin d levels appear fine. Nothing else was mentioned so assuming it’s all fine. Fingers crossed. Pulled on my big girlpanties and ready to fight!

Hi @Joinmelb your hair will thin a bit but it won't all fall out the same as iv chemo, pet scans are pretty accurate, progression would be picked up for sure, stable is excellent news. There are a couple of ladies doing really well on kisqali. It's a pretty well tolerated and effective treatment. Beat of luck with everything, Kat.xx

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 :)

I'm a little late to this conversation, but interested to know @Joinmelb if you got any clearer response from the drug rep about hair fallout? I have been on Kisqali and Letrozole combo since July 18.It has worked marvellously for me, with very little in the way of side effects. About 6 months in, my hair suddenly became super-thin. It didn't fall out in clumps, but I felt virtually bald in the space of a few weeks. I cut it really short, and I am told now that I have a lot of active hair roots, and baby hair growing through. It does actually seem to be thickening up. Great news that your PET scans have shown tumours to be stable. I've also had really positive results- in fact my dosage has been reduced to 2 tablets per day, 2 weeks/1 week off. This eliminates my horrible third week of fatigue, and my skin feels good again. Has your onc considered reducing the dosage, in light of stable results?Best wishes!

Hi there @Ellamary98.Wow, you've been on this drug combo for a bit longer than me! What a wonderful learning experience this cancer crap is for everyone!! (Yes, apologies I have a very wicked sense of humour!!)Drug reps have no idea, earlier this week it was just too upsetting looking in the mirror without my wig as I looked like crusty the clown crossed with a mad scientist and I just wanted to bawl my eyes out! So off to the hairdresser I went and I've had it all shaved off, it feels so much better and I'm not sure why I didn't do it sooner. I saw my normal hairdresser and she thought there was some new growth happening too, so I'll keep an eye on that. I have made sure I've taken photos all along and they have been forwarded to the drug reps by the breast care nurse. I'm wearing the wig out all the time and just go hairless at home, kids think it looks way better too so that is a big positive. It's an "all over" hair issue now though, eyebrows, leg hair, underarms, you get the drift ;-) Oncologist has swapped my letrozole out and swapped me over to anastrozole in the hope that may make a difference to my hair. I'm seeing her at the end of this month so will see what she says about the lower kisqali dose, interestingly my joint pain in my feet is probably worse at the moment so I'm wondering if this is a different side effect that the anastrozole causes. Off to buy some comfy sneakers that will hopefully help me as walking around at work some days is excruciating. Another expense I certainly don't need!!!

Kisquali | BCNA Online Network

Mezza2
Member
2 years ago
Hi Joinmelb, I have really thinning hair but no clump fall out. I am getting a topper to assist with fullness. I was on 600mg Ribociclib and reduced to 400mg this month with side effects reducing enormously. Not as itchy, fatigued or runny eyes.
Jen_B
Member
2 years ago
I agree, it's all the extra little appointments we don't really need. Hopefully this root canal fixes the ongoing issues.

That's great to hear, that's exactly what it is doing for me right now & we are hopeful this will be the case for a long time. I didn't even think about becoming resistant to the hormone treatment. Sending you all the best for ongoing treatment xx
Ellamary98
Member
2 years ago
That's not good to hear at all. I despair at dental treatment in between cancer treatment. It doesn't seem fair! I was on Ribo for about 3 years. It worked well for me, putting my bone mets to sleep, until my cells became resistant to hormone treatment. I hope it lasts that long for you, or longer! Good luck with managing the jaw pain, hopefully a root canal will do the trick. xx
Jen_B
Member
2 years ago

Ellamary98 said:

Hi @Jen_B. I’m done with this treatment and onto paclitaxel now. Sorry to hear that you’re having jaw pain- I hope they’ve found an answer for that. You don’t clench your teeth at night?
Xx

How long were you on Ribo for?

I do clench, especially because of the added stress the past 12 months. I have been made a night splint & will most likely get some botox ion my jaw as heard that helps.

I had excruciating pain last week... turns out the root on my back molar has now died and I need a root canal. Not sure if treatment related or just plain bad luck, but happy to have an answer to all the pain.
Ellamary98
Member
2 years ago
Hi @Jen_B. I’m done with this treatment and onto paclitaxel now. Sorry to hear that you’re having jaw pain- I hope they’ve found an answer for that. You don’t clench your teeth at night?
Xx
Jen_B
Member
2 years ago
Hi everyone, been great to read through this feed that started back in 2020, not sure if you ladies are still on this combo and how it is going?

I've been on kisquali/letrozole since July 2022. Since treatment started I've developed sensitive teeth, never had this before, now it includes jaw pain. Anyone else experience this? Or Do I put it down to joint pain? I've been back and forth to the dentist, I'm now getting a night splint to see if this helps.

Sending everyone strength xx
brightspace
Member
2 years ago
Hi Apricot
I was on Kisq and fulvestrant for 2 years had some hair thinning first year but not too noticeable...though my straight hair did develop a curl on half of back ....so weird
When first diagnosed with mets ...7 years ago I decided to not do hair colours as my scalp was tender
Short and Grey for me with coloured bandannas or vintage scarf is my preferred style
All the best
Bright in hope
Ellamary98
Member
2 years ago
Hi Apricot. My hair was already thin when I started each of those drugs (separately). It actually thickened up significantly when I moved off the hormone-based treatments, but I know how deflating it is to watch your hair disappear. It can feel like the final indignity, especially when you know it is not just temporary. I am preparing for hair loss with my next, impending, line of treatment and this time around have decided to have a wig consultation and try some out. Otherwise, I reckon it's all about a very short cut and great head gear. Maybe a good thickening shampoo (I used Phillip Kingsley products). Best of luck to you. xx
Apricot
Member
2 years ago
I would be so pleased to hear from anyone dealing with hair loss. I am having Fulvestrant injections along with Kisquali. This is now my second time around and at the age of eighty three just feel can I deal with one more thing after thirty five years
of mamograms,lumpectomy breast removal later, cancer now in my spine causing drop foot. I just want to keep what hair I have and just live with some dignity. I would appreciate any little clues that might help.
Ellamary98
Member
2 years ago
35 years!! All power to you, @Apricot. I'm about to tick over ten years and I'm exhausted. I never took the Kisquali and Fulvestrant as a combo, but have experienced both. I don't recall having any dramatic side effects from the injections, but the Kisquali took some time to settle down. Good luck-I hope the effects have reduced for you.