abemaciclib

Hi Gizmo,

I started letrozole in December 2023, then Abemaciclib at the end of April 2024 at age 70. I’d had lymph node clearance in December as 2 sentinel nodes involved. ( the removed nodes all showed nocancer ) Then I’d had 19 radiotherapy blasts during March.

i had hoped that maybe with all the chemo I’d had, clear margin initial surgery, clear lymph nodes and radiotherapy that the oncologist might not after all recommend the abemaciclib, but she has. My lump was 1.2cm, showed up 1 year after a clear routine mammogram and had already behaved according to its aggressive and proliferative statistics. 

I hadn’t really noticed any symptoms from the letrozole apart from revisiting menopausal hot flushes and a transient prickly itchy sensation if I got hot occasionally. 

Now on the abemaciclib as well I have various symptoms which could be attributed to either med- maybe both!‍♀️ I’ve had 2 utis in the last 9 months and dry flaky skin- think that’s been the letrozole. The dramatic bouts of diarrhoea, which did settle down were definitely the abemaciclib!

I’ve got brittle nails, numbish fingers and thinner very dry hair- that could be either. 
My monthly, now 3 monthly blood tests have shown that my immune system is holding up ok and I’m still on the full abemaciclib dose of 150 mg.

i had nasty Covid in the summer - but so did a lot of people in London who don’t have cancer treatment on the go. Similarly I had a long lasting cough in November/December and a then gastric bug, but not full on norovirus! I’ve generally felt a bit under par, though in September and October I was feeling quite  good and thought I’d cracked being ok on these drugs! 
I’m hoping for an upturn in the spring and a return to being the sort of person who often saw bugs and infections off!

Overall I’m glad to be on the treatment, though it is a bit of drag I guess. I’m keeping active, eating a variety of foods, with plenty fruit and veg as I want to get through this as well as possible. 

Anyway people vary a lot in their reactions to the therapies and meds. I feel I’m relatively lightly affected, some scarcely notice anything and others have really difficult symptoms to deal with. 
All the very best with the treatment if you decide to try it! xx

Thank you, I think I have made up my mind now and I will give it a try, hopefully I won't get the side effects. I had an axillary clearance and 8 out of 9 nodes taken were cancerous, so it's best to have it as I refused chemo. as I am 76 with other health issues. xx

All the best, many people on abemaciclib do benefit from having the reduced dose if symptoms and/or blood tests indicate. Under those circumstances the drug does not lose effectiveness!

xx

Thank you, that is good to hear. x

I started Letrozole June 2024 and not had any real side effects .I did have a lot of shoulder and knee pain at night for about the first 6 weeks but that has improved . I started Abemaciclib Oct 2024 .Like you,I was worried about the side effects and it also depressed me a bit thinking of  having the telephone calls from chemo unit and regular blood tests so I was in 2 minds whether to try it .Anyhow ,I decided to give it a go so started on 150mg .First week was fine ,then I started getting awful stomach cramps.Not too much actual diarrhoea, but the pain spasms were so bad I didn't feel like going out ,plus I was so tired .blood tests were OK though . I was given 150mg for second month but had been told if pains were bad to come off it and we'd discuss it next phone call . I lasted just over a week and stopped taking them as it was awful .When I discussed it with chemo unit they agreed to reduce dosage to 100mg and it made such a difference .I have been on 100mg for 6wks now and not had any problems. Any odd stomach cramp and I take a couple of Buscopan to get rid of it .I'd say give it a go ,but don't suffer unnecessarily as dosage can be reduced to see if things improve 

I will be on 100mgs, 50mgs twice a day and I think I will stay on that dose instead of the plan to increase it after a while. I have diverticular disease so don't want any problems in the colon.