Kisquali

Joinmelb

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 

Kattykit

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

kmakm

I'm on Letrozole and I've never had such dry feet in my life. My heels now crack, something that's never happened to me before.

So difficult to accept good news sometimes, but stable is fantastic! Go with it, K xox

Joinmelb

Thanks ladies,
How long have you both been on the drugs?
AND OMG!!!! someone that understands the feet issue!!  Mine are so revolting - I suffer from dry skin anyway (have eczema) and these are just beyond descriptions!!!

kmakm

It's insane isn't it?! No matter how much I pumice them and mosturise them with foot cream, nothing seems to improve them. It used to be they'd get a bit dry in summer but would soften up in winter. Not any more. Revolting all year round!

I've been on Letrozole since 1/6/19. I'm 13 days into a two month drug holiday but so far it's made no difference to my feet. 

I know this is just a minor issue compared with the big picture, especially for you, but geeze, the frustration of these little things is, well, bloody frustrating! K xox

iserbrown

Sometimes problems are not isolated to one medication.  Cracked heels and dry skin can also be as a result of thyroid issues.

Glynnis

@Joinmelb hi I'm also on the kisqali/letrozole combo been on it since April 2019, ever anything is stable, have a PET SCAN next week so fingers crossed there. I to am having hair thinning yes sore scalp so sort of know when itscomi g out if that makes sense,I have had my haircut really short, number 4 at the back and short on top, th I Bing out more at the front that I notice and hair dresser noticed today. I also find my feet are ok but boy my hands are dry and peel and my nails have gone thin and horrible to look at, other Than that I co ple very well with the otherwise effects like you. 😀

Joinmelb

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 girl
panties and ready to fight! 

Glynnis

@Joinmelb my hair is getting quite thin at the front but I'm ok with that, haven't lost it in clumps though so hopefully they can work out why this is happening, I brought a wig when I was originally doing chemo, hated it made my head to hot lol so proudly went bald with hats, still have the wig. I can understand where your coming from in your own time you will let people know but when your ready not because of medication 

Joinmelb

Thanks Glynnis,
They still aren't sure but thanks for your understanding - yes I'd love to be able to tell people in my own time rather than being dictated to, so much is taken away from us as cancer patients and I guess I just want to retain some control!  Kisqali reps are saying they've never seen it to this extent and not this rapidly either! 

poodlejules

Sending best wishes to both of you ladies! . @Glynnis when I bought my wig and had it fitted, there was a woman next to me getting fitted with a half wig hair piece for the front and top of her hair. It was clipped into her hair and just blended in. Might be a good alternative for you instead of a full wig?

Ellamary98

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!

Joinmelb

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!!! 

elisewjk

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 Big hugs and kind regards 

Louweezer

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!!

Joinmelb

Wicked senses of humour are very very necessary at the moment!!! Take care all!