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
The fracture matters more than the score in most of the guidance, even though the score gets all the attention. Has anyone talked about lowering the risk of the next one rather than treating the last?
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
The Grade 3 detail matters more than it sounds, because the window between a stress injury and a fracture is the one place where something can still be changed - and you got it assessed before that closed. That was not luck. You noticed it came back on swimming and driving, which are exactly the loads that should not provoke it.
The DEXA insistence is the right hill to stand on. A bone health profile alongside it is what turns “your bones are thinning” into something that can actually be acted on, and being refused a face-to-face appointment while asking exactly that question is a strange place to end up.
What I would be curious about is whether the team who put you on the Abemaciclib has been told about the shin at all, or whether the drug decision and the bone decision are still happening in two different rooms. Those two only have to agree once for a hold or a dose change to be considered on purpose rather than by accident.The Grade 3 detail matters more than it sounds, because the window between a stress injury and a fracture is the one place where something can still be changed - and you got it assessed before that closed. That was not luck. You noticed it came back on swimming and driving, which are exactly the loads that should not provoke it.
The DEXA insistence is the right hill to stand on. A bone health profile alongside it is what turns “your bones are thinning” into something that can actually be acted on, and being refused a face-to-face appointment while asking exactly that question is a strange place to end up.
What I would be curious about is whether the team who put you on the Abemaciclib has been told about the shin at all, or whether the drug decision and the bone decision are still happening in two different rooms. Those two only have to agree once for a hold or a dose change to be considered on purpose rather than by accident.The Grade 3 detail matters more than it sounds, because the window between a stress injury and a fracture is the one place where something can still be changed - and you got it assessed before that closed. That was not luck. You noticed it came back on swimming and driving, which are exactly the loads that should not provoke it.
The DEXA insistence is the right hill to stand on. A bone health profile alongside it is what turns “your bones are thinning” into something that can actually be acted on, and being refused a face-to-face appointment while asking exactly that question is a strange place to end up.
What I would be curious about is whether the team who put you on the Abemaciclib has been told about the shin at all, or whether the drug decision and the bone decision are still happening in two different rooms. Those two only have to agree once for a hold or a dose change to be considered on purpose rather than by accident.
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
The coordination is the part that never gets named. Oncology, sports medicine, physios and the GP are each doing their own job properly, and the thing that falls between them is the one nobody owns - which is why it lands on you, and why it feels like a second job rather than care.
The holistic language being dropped once active treatment ends is a real pattern rather than a misunderstanding. The system is built around the acute phase, and the long tail is where the structure runs out even though the need does not.
What I would be curious about is whether anyone has taken the bone side as their own problem, or whether that is another one you are holding between appointments.
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.