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Abemaciclib along Letrozole

mun4o
Member

Re: Abemaciclib along Letrozole

Thanks smclaire, that's very reassuring to know as I was a bit anxious to be honest with you. Take care xxx

mun4o
Member

Re: Abemaciclib along Letrozole

Thanks Wendy, glad to hear that we don't need to avoid certain foods and just have to be more cautious of course...

For me is the same at the moment the benefits outweigh the cancer coming back and even the horrendous pain in my knees is ok to cope as I don't want to go on tamoxifen. All the research is showing the benefits of taking Letrozole in post-menopausal women and my cancer was ER8 PR8 so very responsive to endocrine therapy.

Take care and stay safe.

smclaire
Member

Re: Abemaciclib along Letrozole

My sister in law just goes about her life as normal, she is a dog walker so is exposed to lots of potential bugs, she also goes to the gym and is very sociable, like Wendy said when the blood count is low they stop it and restart when everything has settled. She is now on a lower dose and it seems to be fine. I think as long as you are sensible you will be fine. Xxx

Wendy E
Member

Re: Abemaciclib along Letrozole

@mun4o Bless you, sounds like you have had a really tough time. I have also been effectively shielding since diagnosis, have been to a few school shows but double masked and choosing seating with plenty of ventilation etc. Despite that, daughter brought covid home from school and shared it around. I tested positive just before my final chemo (which was then delayed by a week) but thankfully wasn't particularly ill with it, mainly cold-like symptoms. I was fully jabbed, including booster.

The advice from my oncologist was that there was no need to be as cautious on the Abemaciclib and that I could eat foods that I had been told to avoid during chemo. He recommended taking sensible precautions, so being careful about eating out / takeaways from places where hygiene may not be good etc. 

Since finishing chemo and radio I have started venturing out, which feels a bit scary after being at home for most of 2 years. I am still not comfortable being close to strangers, even outdoors but it does feel good to be getting back to some sort of normality. 

As I mentioned previously, my WBC was low on last blood test. The advice was be sensible about staying away from anyone with an infection, maintaining good hand hygiene etc. It wasn't suggested that I needed to isolate at home again.

Two years does sound a lot but Abemaciclib also seems to significantly reduce chances of BC returning. At the moment for me the potential benefits outweigh the side effects. My oncologist did say that if I don't get on the Abemaciclib it can always be stopped. I can't really say if side effects of Letrozole are enhanced with the Abemaciclib as I started both at the same time 4 weeks ago.

mun4o
Member

Re: Abemaciclib along Letrozole

Thanks for posting here Wendy,

I am just anxious about being a prisoner in my own house yet again as when I was doing chemo I had to pretty much shield the whole time. I was just looking to some sort of normality. After 2 years of covid and my diagnosis last July, it's been really hard on my family especially the kids. I've developed a nasty infection in my wound and was in and out of hospital for the whole of last summer. I was diagnosed just in time for the school summer break 😞

I can't remember the last time I was out shopping, going to the cinemas...

Do you have to be on a 'clean diet' and not eat certain things for example? I was meticulously washing all fruits and veg and not eating soft cheese, pate, eggs, prawns, etc. for 5 months..

Is just that 2 years sound like a lot...and actually I am back to a phased return to work but am lucky that can work from home though my boss wants me back in the office and managing the side effects will be a challenge...and I've been on a extended sick leave pretty much since my diagnosis...

Also do you find that the side effects of Letrozole are enhanced and are getting worse with the Abemaciclib? 

Wendy E
Member

Re: Abemaciclib along Letrozole

Similar to you my primary BC was advanced and multiple lymph nodes were affected. I have been taking Abemaciclib and Letrozole for about 4 weeks now. The list of potential side effects is quite daunting but so far the main noticeable side effect is diarrhoea, which for me is controlled by Loperamide (Imodium). I am having blood tests every fortnight at the moment, test after 4 weeks showed that my white blood cell count had reduced, so I was advised to be aware that I have a higher infection risk. If the WBC count gets too low, the plan would be to come off the Abemaciclib for a short time to let this recover and then restart. 

smclaire
Member

Re: Abemaciclib along Letrozole

That’s ok, I found this forum so helpful when I was going through it in 2019 , I still pop on every now and then to help out if I can 🥰

She is getting on with her life now and it’s definitely easier than chemo , the diarrhoea gets better after a few weeks of starting it, she does have IBS which makes it worse I think , it’s great that there are these treatments available now , take care 

Claire xx

mun4o
Member

Re: Abemaciclib along Letrozole

Thanks smclaire,

It's very helpful to know what to expect especially from somebody who has been on the same journey as your sister in law. It seems like all the symptoms you can get from chemo the only difference is you take it orally.

smclaire
Member

Re: Abemaciclib along Letrozole

Hi , I’m not on this but my sister in law is for the same reasons as yourself. She has had problems with diarrhoea and her immune system has been very low at times, she is very prone to infections and has had the dose reduced a bit to cope with it . She does get tired at times but she is keeping fit going to the gym etc and that helps.

Good luck xx

mun4o
Member

Abemaciclib along Letrozole

Has anyone had abemaciclib together with letrozole? My oncolgist wants to put me on this for 2 years as my primary BC was very advanced, big tumor 12.5cm and 3 lymph nodes affected. I had mastectomy and 31 lymph nodes removed plus 5 months of gruelling chemo and 15 RT session and will be on AI (letrozole) for 7 years. This is a new drug recently approved so I am just wondering if anybody has the same combination of drugs and if yes, what kind of side effects to expect. Thanks