Abemaciclib along Letrozole

[mun4o]

Hi destiny86

I am so sorry to hear this. Have you thought about getting some counselling? I did and I am not a person who shares a lot but I had to do something - for my family and especially, my kids.

The things we need to deal with on a daily basis and what our bodies went through there's no shame in asking for help.

Another lady that I know personally is on antidepressants and is actually getting with her life nicely. You don't have to suffer in silence!!

Also the symptoms can be related to the menopause. Have you been referred to the menopausal clinic? I know that they don't want to see us breast cancer ladies but we still need to live with the awful symptoms and there are things that they can recommend.

Just some thoughts that you can explore. Hope that this will help you a bit and you know that you are not alone. You can always vent here on this forum...

All the best. X 

[destiny86]

Well what Van I say. My Depression is back full time. Am on 200mg a day now but no end in sight. Think It's the combination of abemaciclib and exemestan 😞

[mun4o]

Hi Susie59

Sorry to hear about your bloods...fingers crossed everything will be ok...if somebody thinks that because it's an oral drug that it won't have so many side effects they couldn't be more wrong. My workplace have been really pushing me to go full time but this is simply not possible at the moment...the amount of stuff we need to go through and deal with on top of everything else is unbelievable and it seems people don't realise that we are still in active treatment...

There is a lymphoedema support group that Penny Brohn do... Kate is simply an amazing lady and she is a volunteer giving her time to organise the sessions. I've been really struggling as I had full clearance (had 3 positive lymph nodes) and 35 nodes removed so I've been going to these sessions and the information has been really helpful especially as I had to wait 7 months to be seen by a lymphoedema nurse so highly recommend these if you are struggling with lymphoedma.

Take care x

[Susie59]

Hi everyone 

Again, useful information has been shared  and noted so thank you. I will be trying out a yoga session today. My local support group have organised one and it starts with the lymphatic system so ill give that a go. 

WBC count low yesterday so starting on lower dose has been postponed for another eight days. 

Take care 

Xx

[mun4o]

Hi All,

I can't agree more with Ang2022 - Penny Brohn is an amazing charity and I can really highly recommend Alisa Burke's classes.

They have so many other resources about nutrition, different support groups, etc. They've been a life line for me during treatment and even now I am still attending some of their classes. If anyone is struggling to find a support group or exercise class then Penny Brohn is the place to go to - 100%.

All the best and take care.

[Ang2022]

Hello all

i just wanted to say re exercise that like mun4o I try to do a bit of walking most days, around 30-40mins and I find that the days I have been out for a walk I sleep better at night.
I think yoga also helps and on days that I feel energetic I try one of the online fitness classes of Penny Brohn. I generally have found this charity very helpful , they have lovely recourses.

Best wishes to all 

[mun4o]

Hi Susie59,

I am on 100mg twice a day since August...not much of a difference. My energy levels are non existent and I am constantly exhausted...

I also had a break last month and it did make a difference but after starting it again it kicked in after a week. Like the the cramping and the big D... Though, not as often but still persistent. I think that it needs to reach a certain level of concentration in your body before the symptoms kick in so breaks are definitely something I will consider in the future again.

My oncologist wants me to go on the 50mg but I am reluctant. Reli here on this forum has been on the lowest dose and also have been having regular breaks (check the tread) so I think it's up to us to decide what we want.

Hope that this helps.

Take care.

[Susie59]

Morning everyone 

I lasted 12 days on 150 mg twice a day. Couldn't get off the sofa, very poor appetite, fatigue etc etc  feel like I'm letting everyone down but there was no quality of life!

I'm now on a 12 day break before I start reduced dose 100mg twice a day. 

Has the reduced dose made anyone"s life easier? Has anyone gone down to 50mgs???

Thanks in advance 

Thinking of you all

Susie 🥰

[mun4o]

Hi brendal,

Thank you so much for your kind words. If this thread helped one other person that's my goal reached!!! I am so happy that the drug is now readily available on the NHS for primary BC ladies! And as from Reli's story it's been proven that it works - it's a miracle drug no matter what awful side effects it does wonders...of course we need to weigh the pros and cons but even the lowest dose seems to be working ok...how amazing is that... and I understand that everybody is different but I made up my mind and am sticking to the treatment for sure!!! 

Similar situation, I didn't have anybody with me at the one stop clinic - my husband was in the car park. For my diagnosis I was on my own again and my hubby was on the phone. So I totally understand how you feel and that's been the case for many women...  

5 months of chemo were absolutely gruelling and I felt sooooo alone and on the last cycle I was crying my eyes out because I was scared that my safety net - the brilliant chemo nurses - weren't going to be there any longer to support me...that was really hard time for me. Harder than when I got my diagnosis! But you pick yourself up and keep on going...I've got 2 children and I need to be strong for them no matter what...

Wishing you all wonderful ladies all the best and take care xxx

[mun4o]

Hi destiny86 again,

Re sleeping problems: oh yes, absolutely...up from 1am this morning...it's just a vicious cycle...you can't sleep during the night and then having a long naps during the day doesn't help your night sleep...

Again for me walking is helping sometimes with the insomnia...I can go easily to sleep but when I wake up that's it...and the hot flushes do not help too...

I don't want to go on sleeping tablets but read that melatonin can help. Though it's not available on the NHS. Haven't tried it yet myself but on many American forums people are taking very high doses...I am not recommending anything here just stating what I've read...

The care x

[mun4o]

Hi Reli,

I am so glad to hear that the treatment works for you...

I will definitely follow your advice and persevere with the Abemaciclib. 100% am not going to give up now when I know that it works!!

Thank you so much for sharing your story and wishing you all the best 🙂

[mun4o]

Hi destiny86,

I am sorry to hear that you are experiencing side effects...

The answer is no not really...but I am trying to go on a gentle walk every day...at least 30-45min...I know that is not a lot but it helps with my joint pain...and yes, I am the same as you - having very long naps in the afternoon when my energy levels are non existent...

You don't have to push yourself hard...after what our bodies are going through we need to be compassionate to ourselves...

Take care and all the best.

[destiny86]

By the way can you do sports with your heavy fatigue? My Do Tor says sports help a lot. Best 3 times a week with a lot of sweating. Well it doesn't work for me. I Crash even more when I Do that and need more time to recover. Or I am even too weak to do any sports with lots of sweating. Am mostly unable to leave the bed and sleep a lot during heavy fatigue times...

How about you?

[destiny86]

He my friends,

Now it got me as well... Again... After 5 weeks having minor problems taking full dose of abemaciclib I finally crashed last Friday. Hat heavy stomach pain, nausea, disrrhea, headache, awful heavy fatigue...

Had to reduce from 300mg to 150mg per Day until I am stable again. And then will try to up the dose again. Maybe at first only 200/day and then See how it goes.

Btw does anyone else have heavy sleeping Problems due to antohormonal therapy? It is really exhausting and norhing really works...

Regards

Anne

[Ang2022]

Hi Reli

Thank you so much for sharing your experience, it is much appreciated and  I am very glad to hear that the treatment is working and I hope it continues like that 😊.

Mun4o thank you for suggesting the working with cancer website, I will get in touch with them. 

Brendal I found too that going through treatment alone was difficult and it is really helpful to hear other women’s experiences.

Best wishes to all x

[Reli]

Hi Mun4o,

I did notice an improvement when i changed to the lowest dose of abemaciclib.

The fatigue is less, not really a problem now. diarrhoea and cramps reduced but i still need a weeks break every month.

I persevere with the treatment as i have secondary breast cancer.

I have been on abemaciclib for around 18 months, i have 3 monthly PET scans and since starting it my lung mets, etc. have stopped growing and been stable.

This is why i recommend that all you lovely ladies try to persevere with the treatment if you can, as i know it works 🙂

Best wishes to you all x

[brendal]

Thank you sooo much for starting this Post/thread MunR0. I am thinking of you daily and wishing you the very very best in your courageous journey. Your sheer determination is hugely inspiring me. 

Am also wondering how many of us were diagnosed coming into the 2nd half of lockdown. I did everything and I mean everything alone. The nurses and doctors were amazing and became my friends throughout and made me laugh and even bear hugged me on occasion when It all felt hopeless and I sobbed sitting alone in those dratted chemo chairs.. Those hugs meant the world to me, as my family were all abroad and unable to travel. I had my husband and daughter at home thankfully. 

Also as chemo unit was separated by large screens you could barely see the patient next to you. So I never got a single chat going in 10 long months. Chemo, Mastectomy,  radioT. And this gal loves a chatter and swapping notes. 

So I found that quite hard. 

I want to respect the subject of your thread MunR0, but just wanted to say this is helping me hugely now and the other lovely ladies sharing in here. Thank you all soooo much. 
I honestly thought this part of the journey would be a walk in the park so am shocked to hear all our collective stories. 

Best wishes to you all. 
Brendal 

[mun4o]

Hi Ang2022,

I agree 100% with Reli definitely phase return... and start slowly... everyone thinks that when you've finished chemo and radio that's it you are fine and ready to go back to work...this can't be further from the truth...fatigue from radio alone can start months after the treatment has finished...

And yes, it seems that nobody realises that we are still in active treatment and that this drug is simply awful...!!!

I can highly recommend 'Working with cancer'-check their website they do lots of online seminars and have lots of resources!!

Hope that this helps a bit

Take care.

[mun4o]

Hi Reli,

Same here...I also don't tolerate Abemaciclib very well and have been struggling a lot...the stomach cramps are horrendous almost like having contractions and the fatigue is life changing...I simply can't function!! My energy levels are non existent...

I am on 100mg at the moment but my oncologist wants me to go on the lowest dose. I am not convinced that is worth going on the 50mg. I started on 150mg and had 3 cycles and he reduced the dose but the fatigue and the diarrhoea did not improve significantly. How do you find the symptoms on the lowest dose? Do you still get them?

I am not sure if there is a point going on the lowest dose if the symptoms still persist?? Just wanted to see what everyone else's experience is...

Many thanks. 

[Reli]

Hey,

I would definately recommend a phased return. Took me 6 months to go back to full time work! 
The fatigue, abdominal pain and diarrhoea were ridiculous!

I am on the lowest dose of abemaciclib now but still have regular breaks.

This is because i do not tolerate it very well and get regular bouts of painful colitis.

Good luck 🙂

[Ang2022]

Hello all

I am on Letrozole since May and Abemaciclib since September (with a week break due to getting Covid), so relatively early days.

I too have joint pains with Letrozole . With Abemaciclib I have more often cramps rather than diarrhoea but also quite a lot of fatigue.

Could I please ask if you are back at work and if so how many days per week do you manage? I am starting a phased return and was thinking to go back 2 days to start with, increasing to 3 after a few weeks. But I had a chat with my insurance who told me that usually people would go back to full time work within 2.5 months - I don’t think these people though were on Abemaciclib! 

I will have a chat with my oncologist on Monday but in the meantime I was wondering what other women’s experience on this drug combination are.

Many thanks

[mun4o]

Hi Susie59,

I've been on Letrozole for 9 months and Abemaciclib for 5.

I was hoping for some sort of normality after finishing chemo and radio but then my oncologist put me on Abemaciclib for 2 years...along with letrozole hence, the tread I started when doing 'moving forward' back in May/June. It's been very challenging, especially when you need to have regular blood tests and pretty much you are being stuck in your home the same as with chemo...even school runs and hospital appointments can be a problem...I missed some of my appointments because of the diarrhoea...that how bad it can get...I am on the max dose of 9 loperamide a day ... and sometimes is not even making any difference. I was told by someone to use liquid imodium, haven't tried it yet ...

Having no energy whatsoever is the really hard part...!!!

But as I weigh my pros and cons I don't have that much of choice it looks like...

Take care.

[mun4o]

Hi Anne,

Thanks for your message.

I started the Letrozole 4 months before the Abemaciclib and never had problems with depression...just the really bad joint pain...

It's the extreme fatigue which is the side effect of the Abemaciclib that I am struggling with... And of course the dreaded diarrhoea...

It looks like that I am further ahead with the Abemaciclib treatment than most ladies here on this forum (I actually started this tread) as I started it before it was approved on the NHS for primary BC (I think it was green lighted in September) and didn't have a lot of info on how this combo works in ladies like me... But I can tell you that it's been 5 months and it's not getting any easier...

I understand that everyone is different but I really don't want to change to another aromatase inhibitor at this stage when I know that is the Abemaciclib that is the culprit...an awful awful drug...

Take care.

[destiny86]

Hey mun4o,

I really had extreme trouble with Letrozole. It gave me heavy depression!! Together with Abemaciclib I was unable to leave the bed! I know it was the Letrozole because I stopped taking Abemaciclib but the depression persisted. I then switched from Letrozole to Exemestane. And what can I say my life is livable again. I still struggle with side effects but they are not as Bad as with Letrozole. Also taking Abemaciclib for 5 weeks now together with Exemestane. The first 4 weeks were fine. The last 5 days were hard but now on the road to recovery again. So all in all it seems that I get along better with this combination. Maybe it might be Wörth it to Switch your Letrozole as well. For me it gave me back some life quality. So what I want to say to you you don't necessarily have to stick to the therapy you are having now if the side effects are unbearable. We never know if or when the cancer comes back. So it is important to have at least a satisfying life quality along the way.

PS: I am also a high risk Patient and feel with your fears. My Tumor was 7cm but I had 8 Lymph nodes.

Regards

Anne

[Susie59]

Hi again everyone 

Been on Letrozole for 3 months now. Started abemaciclib 11 days ago. The fatigue has returned big time and bad diarrhoea every other day. Also lost my appetite again. I had 3 good weeks after radiotherapy ended but feel I've gone back quite a few steps again now 🙄

Too tired to even walk far but I know I must start trying . 

Also woken up with a very painful jaw this morning...not sure it thats the drugs ?? 

Don't want this drug to rule my life but its certainly a challenge!!!!

[mun4o]

Hi brendal, thanks for your kind words...I also have 3 lymph nodes involved and it was a big tumor 12.5cm (lobular cancer) and am at a very high risk of recurrence, especially, in the first 2 years after finishing chemo/radio with my type of cancer - that's what my oncologist told me...so I was glad to hear that there is something I can take - 2 pills a day to keep the cancer away but omg did I know what was to come next...it's an awful drug there is no other way to describe it...

After 5 months of taking it is really really hard to stick with the regiment as the time goes by...or at least when I was first diagnosed I was ok, I had the stamina and the resilience to ask what's next, what's next - throw at me everything I can take it for sure...now I daren't ask anymore...

I met a lady on one of the Penny Brohn webinars and she was on the same combo and having really bad headaches...worth checking...

I am on a 100mg now...it starts ok until it doesn't...

I have read a lot and my oncologist is on top of the latest research...there are other drugs from the same "ciclib" family that don't cause diarrhoea but are more dangerous regrading Neutropenia and sepsis...

I think everybody reacts differently - I didn't have that many of the bad side effects from the chemo maybe was lucky in that way but now is awful especially the fatigue. I am in my 40s with 2 teenage kids and I have to function...it's really heartbreaking when your body gives up and you are falling asleep at odd hours without even realising sometimes. I can't be spending my life in bed for the next year and a half...

All the best and take care.

[Kitty123]

Sorry to hear you are having such a tough time, it really is a marathon this breast cancer treatment stuff, it goes on for many years !

Hope things improve for you. 

Take care & best wishes x

[brendal]

Oh no, I am so sorry to hear this for you Mun4o. I was really hoping you would have had some slight improvements by now. Especially when we thought the worst part was over.  

Have you tried the drug manufacturer helplines? Yes, it is so maddening as you rightly say after our gruelling chemo!! 

I am flying along on the bloods etc and still no tiredness or cramps, but 2 weeks is early days? I am having regular visual disturbances now that I thought were migraine but realise now it might not be? Will phone the helpline. 

Am now on Codeine for the big D and too early to say? But fingers crossed. But it only hits every two days or so? Again it’s a crazy pattern I can’t pinpoint. 

To be honest if it wasn’t for the visual disturbances I would be coping great. It’s always something. Grrr… (still they don’t last too long, up to 30 minutes or so). I inject Imigram as per my regular migraine attacks.  And 3 times it’s struck upon waking up in the morning?? Why?? 

Can your oncologist or hospital  pharmacist help you any further? I sooo hope you get more relief soon. 
 
What is your reduced dose? I am still on 300 a day. Oncologist is watching closely in case it’s not for me going forward? But apart from the visual disturbances every 3 days or so I am coping very well on paper. 
I wonder does it all lessen as time goes on?  And the first 3 months are just rank?? I would LOVE to Jack it all in but with 4 lymphs infected I daren’t or at least not without a mammoth fight? 

[mun4o]

Hi kitty123

I am due to have my second Zoledronic acid infusion later this week. Had to postpone it as I needed wisdom tooth extraction and it was really scary - necrosis of the jaw and whatnot...after the first infusion in February it felt like a horse has been kicking me in the spine and I was very very achy all over for the first 24h...

I have been taking Letrozole since February and Abemaciclib since June. The letrozole is giving me the worst joint pains and I need to take it for 7 years. The diarrhoea and stomach cramps from the Abemaciclib are horrific and I am pretty much a prisoner in my own house...

After finishing chemo and radio I was really hopping for some sort of normality and not having to go for regular blood test every month and feeling like a zombie - knackered and exhausted all the time from the Abemaciclib...I think in some ways this is worse than the diarrhoea... can't function properly in the afternoons and need very long naps...

Recently, it's been really hard to stay positive but that's life and it sucks...

[mun4o]

Hi Brendal

No good news I am afraid....I am struggling and honestly it doesn't get better. I had my dose reduced and had to stop it twice as my body needed a break. Been taking it since June and the diarrhoea didn't improve with the lower dose. The stomach cramps are horrific. I am also exhausted all the time and can't really function in the afternoons and need to have a nap...

Never had this side effects during the 5 months of gruelling chemo.

Sorry to be the bearer of bad news...

[Kitty123]

Hi, sorry to hear that you are suffering, I am taking abemaciclib & anastrozole. Month 1 I had 6 episodes of diarrhoea, resolved with a tablet. (1st week nothing) just started month two, 2 episodes in one week which isn't too bad. My bloods at the end of month 1 showed low white blood cell count which is a worry but they let me continue, bloods & review next week

It's not easy juggling all these things, I've got my first zoledronic acid Infusion next Tues & getting a bit nervous about that.

I'm hopeful that these drugs do the trick & I don't get a recurrence

Best wishes x

[brendal]

May I ask how you are coping now please? Myself on Abem & Letr 2 weeks so far. After 7 days Diarrhoea kicked in BIG TIME and is sooo annoying. Never had once on 5 months of chemo.  Though seems to alternate rapidly between this and constipation. No other side effects so far, thank God. 2 years treatment proposed. Does it ever settle down? Imodium gives me migraine so trying to avoid, which is not helpful to the cause. 

But overall doing well. No cramps or hair loss or tiredness thank God. But perhaps early days? 
Would love to hear others stories as well. 
I feel we are all pioneers with this drug combination. 

[confused22]

Hello there, 

I have just been told by my dr that metaclopramide causes an upset stomach /diarreah and subsequently they have given me something different xx 

[mun4o]

Hi Susie59,

I am now on my third cycle and my oncologist had to reduce my dose as I was having very bad sad effects...I also didn't have diarrhea when going through chemo but unfortunately, with the Abemaciclib I did...am pretty much house bound it is really bad as this is the most common side effect and also experiencing very bad stomach cramps like really bad. I am also constantly exhausted and having very long naps, which I did when I had chemo but not that long, now I almost can't function in the afternoons without having 1-2 hours nap.

Re hair loss: I had a bit - mainly my eyebrows but nothing major as with chemo. I've finished chemo in February and already had 2 haircuts. My hair is very thick and taking Abemaciclib doesn't make a difference on the regrowth or at least is so minimal that I can't really notice it.

I was also not sure in the beginning (not that many women seems to be taking it for primary BC) that's why I started this tread but you have to weigh the pros and cons. There are pills to take for the side effects and also am working from home so that is helping but it's really stressful when going out for hospital appointments, school runs, etc. You can also have a break from it for while, just to give your body time to recuperate. For example I had a tooth extraction and had to stop it for couple of weeks. The same if I decide to have the symmetry surgery as you are still prone to infections and will have regular blood test as with chemo.

I will be on Abemaciclib for two years so it will be a very long journey for me and that's on top of letrozole which has side effects of its own...

Take care.

[Susie59]

So reassuring to read these comments.  I finished chemo in June. Im now halfway through radiotherapy.  Just been offered abemaciclib. Really struggling with decision as to whether I take it or not. 

After reading this thread I think I should take it and at least give it a try .How is everyone getting on with hair loss? I have just regrown about 2 cms of my hair . In the notes I was given it states that hair loss is pretty much a certainly 😔😔

I didnt get any vomiting or diarrhoea when I had chemo so hope it won't be too bad with abemaciclib

Thank you for this thread. I've been very stressed but feel relieved I have found other people in the same position 😊😊

[destiny86]

Hey,

Wannted to talk to my medial team. But they are closer until friday 😕

Will try to reach some one on the lilly program for verzenios. I think I have to stop the med for a while to find out whether It's verzenios or letrozol that's making those horrible side effects 😕

[mun4o]

@Wendy E 

Glad to hear that your wbc is improving. I am not schedule for a blood test till next month.

Apparently, is a very common side effect called dyspepsia...

Take care.

[mun4o]

@Confused Meanderings 

Thanks, I spoke with my chemo nurses and am starting omeprazole from tomorrow. Hopefully, it will make a difference.

Take care.

[Wendy E]

@destiny86 

I think talking to your medical team is a good idea. 

I have been on abemaciclib (and letrozol) for 8 weeks now and haven't had too many problems apart from the diarrhoea. As I mentioned in my other post my blood test results are now improving, which I am taking as a sign that my body is adjusting. 

I am tired, especially at the end of the day, but nothing like I was on the EC chemo. I've had very few uninterrupted nights sleep since diagnosis, but I didn't think it has got worse with the abemaciclib / letrozol. I have had a return to menopausal hot flushes, but I am blaiming the letrozol for that. 

I can understand that you are scared about stopping / pausing treatment. I felt the same way when my WBC was low and it was suggested that I may need to stop taking it for a while. 

[Wendy E]

@mun4o 

Sorry to hear you are not feeling great, had it improved at all over the weekend?

I have had abdominal cramps associated with diarrhoea but no pain apart from that. As suggested, probably best to speak to your medical team.

I had a further blood test last week and WBC continues to improve, so it does appear that there is a period of time before the body adjusts to the new drug.

[Confused Meanderings]

Hi

Sorry you're having such an uncomfortable time. I think you need to discuss this with your medical team because they will know what to do for the best. My hospital has a cancer care helpline that you can phone for advice, do you have similar?

[mun4o]

@destiny86 

@Confused Meanderings 

@Wendy E 

Hi All,

Sorry for the mass posting but can anybody here on this tread help me??

I started the Abemaciclib on Thursday this week and am having very very bad tummy pain like very bad indigestion/heartburn...

My tummy is killing me and the only thing that changed is me starting the drug so it can't be anything else...nausea is also bad but am taking metoclopramide and it helps a bit but not with the tummy pain.

On the leaflet with all the side effects that wasn't listed as a possibility.

Anybody else experienced the same symptoms?

When I had chemo and was on steroids the same thing happened and I was prescribed omeprazole so not sure if I need start taking it again...

Thanks.

[mun4o]

Hi @destiny86 

I've just started the Abemaciclib this week and am not sure how am going to react yet as it's been early days but if you are so tired after one week of taking it I think that you should talk to your doctors. They can adjust the dose or stop it for a few weeks and see if you feel any better. I dont think that they will stop it all together... like with chemo when your body needs a break to recover...

And yes, I know the feeling I had problems with my wound all through chemo and I was so worried that they will stop the treatment that I didn't want to tell them...but if you are feeling so tired all the time I think that you need to get yourself checked up...

Take care.

[destiny86]

I am taking letrozol and abemaciclib die to high risk of relapse. I started with 3 weeks letrozol alone. It was Ok. Had some Joint pain and still the left over fatigue from the RT and chemo. But it was Ok. Then I started Abemaciclib and after 1 weeks it started to go downwards again. I have really really heavy fatigue, depression and headaches. Diarrhoe isn't bad. I am really exhausted and also concerned as I sleep all the time an every Day is a fight. I was on a good way of recovery before I started the Hormone therapy. I have to add that I had fibromyalgie and CFS for years but had it under control before the diagnosis. Now I feel I am back at some of my wirst times and don't know what to do. I'm thinking about taking to my doctor about it. I don't even know whether letrozol or abemaciclib is the real Problem. At the same time I am scared to stop abemaciclib because I don't want the cancer to Come back. Even if it means sending Most of the next 2 years in bed. I am 35 so I still should have a lot of years to life if I'm Lucky...

What would you do?

Greetings

[mun4o]

Hi @Confused Meanderings 

You need to be careful what are you aplying during RT. They gave me a list of things you can use during the RT...during your CT assessment the radiographers are going to talk you through what kind of moisturiser is allowed the same for deodorants, etc...I've been using Aveeno and their shower yougurts are to die for...but during RT I used what they gave me - it's called Flamigel and you need to apply it a few times a day even on your back.

I did find the same - you sign your life away almost in the hands of the surgeon, oncologist, etc. and it was very scary. Also, did find very difficult communicating with both actually as I was always questioning their decisions and they didn't like it...but I think is the same for everybody...and is your body of course you want to know what's happening...

Hope everything goes well with your RT!

[Confused Meanderings]

Hi @mun4o 

Yes, I think you're right about the benefits of abemaciclib alongside letrizole outweighing the downsides. I think I will probably need to be a bit more proactive in finding a combination that works for me. I've tended to just let the hospital get on with it in regards to the chemo. The radiotherapy seems to be starting a bit quicker than the oncologist said that it would. I have my CT assessment tomorrow, I wasn't expecting it until the end of next week. Its probably a good thing though. Good tip about the moisturising. I have Cerave at the moment, but might switch to Aveeno which I know a lot of breast care nurses recommend. I also have some lovely Boots No 7 stuff that my husband got me for Christmas. Its no better than any other moisturiser, but it smells gorgeous! So I slather it on other body parts that don't matter so much! Hope all goes well for you on Thursday.

[mun4o]

@Confused Meanderings 

Good luck with your radiotherapy!

I started taking Letrozole straight after 5 months of gruelling chemo; didn't have a break really...

I was so worried about my wound during RT as I had very nasty infection but everything was ok at the end. I used a lot of Flamigel RT and it did wonders on my wound. Moisturising is a key for RT!!!

Going to pick the Abemaciclib on Thursday...very anxious and apprehensive but at the same time less worried as it's for the better good...i.e. the cancer not coming back.

Take care.

[Confused Meanderings]

Its been helpful reading this thread as I will be starting Letrozole and abemaciclib at some point. I've just finished 5 months of chemo - I sailed through the First half but the last part was tough. Radiotherapy will start in the next 4 weeks and then at some point the letrozole and abemaciclib. I've managed to escape Covid, even though my husband got it and I have been out and about, but I have been careful and mostly avoided large gatherings. Best wishes to everyone.

[mun4o]

Thanks for the update Wendy. Glad to hear that your blood test was a bit better and that you are not getting that many side effects. I am starting it on Thursday next week so as you said time will tell...fingers crossed that I don't get that many side effects... I think that they are closing this chat on the 17th of June so not sure if you would like to keep in touch by email perhaps. Take care.

[Wendy E]

@mun4o 

Quick update, last blood test showed WBC count had increased, I also seem to be getting less diarrhoea. I am hoping that means my body is adjusting to the abemaciclib and that the side effects will settle down. I guess time will tell, more blood tests this week.