Hi everyone,
I’ve been on Abemaciclib (Verzenio) for 12 months and I’m currently trying to heal a bony stress injury/stress fracture in my shin.
Because Abemaciclib stops cells proliferating, I’m worried it’s slowing down my bone healing. Did your oncology team recommend a temporary drug hold and/or dose reduction to let the bone heal? How long did it take you to recover?
Would love to hear from anyone who has balanced a bone injury with CDK4/6 inhibitors!
Thank you! xx
Hi!
Thanks for taking the time to reach out. It’s not a stress fracture yet but has been classed as Grade 3 bony stress injury(Grade 4 is a fracture). Initially I thought it was simple shin splints with getting back into running but as it wasn’t getting better/recurred with minimal loading/impact(swimming, driving, pool exercises)I had it assessed.
Didn’t want it to become one.
I’m insisting my GP to organise a DEXA scan and bone health profile as a minimum. They’d declined to see me F2F.
You’re right in saying that the focus is on the score and not side effects on healing tissues/bone. It’s a new drug and there’s nothing so far about this specific situation.
x
Thanks for the vote of support. I feel like I’m the one having to coordinate my care- Oncology, Sports Medicine, physios, GP. I get that I need to advocate for my health and care but they don’t make it easy. It’s a nightmare when they say they treat the patient holistically but it seems after ‘active treatment’ it’s not quite the same.
@sg81 They most certainly do not. Unfortunately we do have to keep advocating for ourselves or the post-treatment cracks are rather large x
At the moment, as the Sport Exercise Medicine consultant was private, he greatly encouraged me to pursue via the NHS as there’s a lot of potential cost involved with scans and treatment plan. So, at this point in time, I’m trying to get the various groups to work together.
First they have to actually assess me rather than relying on a phone triage email to them(GP has yet to see me and none of the Abemaciclib clinical team have spoken to me either - just their secretary)then I have to insist they review Abemaciclib and it’s effect on impairing bone healing rather than it being the cause as I suspect that’s all they’re hearing now.
I’ll be sending an email to the Onc team with the attached SportsExercise consultation and CT report tomorrow. I definitely don’t want to progress to a fracture and get a DVT to boot.
If communication isn’t in black and white, then they can claim deniability.
It’s like hitting one’s head against a wall but I will persist in getting my point across. I have emailed the Abemaciclib team itself, and specifically their named secretary.
I’m also preparing myself for the need to seek a second opinion out of this network.
The email should be all they need to make a decision but you never know how things can go.
I’ve been informed via email by a clinical coordinator that it has been passed to someone who will discuss it in detail with me in a week.
Seeing that reply made me feel like no one was listening
I rang the Hotline again and posed them this question -
If someone was being investigated for a suspected fracture/DVT how would you advise that patient/treating doctor what to do with the Abemaciclib in the meantime according to their clinical guidance?
Their reply-
They would ask the patient to stop it pending investigations.
I then posed this to them-
Then why hasn’t my clinical team taken me seriously? Are they waiting for me to break my leg or contract a DVT(being on tamoxifen, Abemaciclib and immobile are ALL risk factors) before they speak to me?
Thankfully they started to see the logic and went to clarify with their OnCall team who confirmed I should stop it pending review/investigations. They’ve emailed the team again to make sure I’m contacted beforehand but still waiting >24hrs later.
I am less worried because at least I’m off the tablet which in my mind is a huge contributing factor to impairing my healing but I’m frustrated and disappointed I needed to take it this far for someone to give me a decision about one aspect of this situation.