Any experience with stroke and very low platelets?

At a recent 3-week hospital stay, I was given daily injections of Lovenox to prevent clots. Despite normal heart rhythms and clotting parameters (INR, PTT, etc...) hospital protocol was to do this simply because the nature of being confined to a hospital involves a lot of inactivity and sitting around. Think airline passengers getting DVTs on long flights because of the inactivity and occasionally bad pressure points reducing circulation.

Other than that, I don't have much insight. Seems like a very appropriate question for your sister's oncologist or specifically a hematology specialist partner. Do you have any kind of privilege (medical surrogacy) to ask the doctors that kind of question on her behalf? If there is notable aphasia now and a possibility of it getting worse, all the legal care delegation should be taken care of on one of her good days while she's able to participate.

Hi -

I was on Folfirinox for 29 cycles, when my platelets dropped ( there were low before I was diagnosed in Nov 2022 ) I started getting an injection of NPlate with each treatment. I now get gemcitabine on a 3 week on 1 week off schedule, I still get the NPlate shot with each treatment I am at MGH in Boston.

Yes, spoke to the onco with her on a teleconference call. My fears justified without any real solutions. Waiting for platelet resolution before any blood thinners. In the meantime, off oral capecitabine, off metformin due to kidney insult, CEA seems to be trending upwards. I mentioned this to her onco prior to them joining the meeting. His only reply was, "Well we will be watching that." Seriously?????
I am an NP so I know the chance of her having another (larger) stroke is high. There is notable aphasia as well as mild left sided eyelid ptosis since the initial scan indicated several areas of infarcts on the rt as well as left (Broca's area = affects speech). I spent a month with her and her partner but now back home 2,000 miles away.
She has labs and MRI/CT scheduled for next week. Not sure how this will play out at this time.
Thank you for your response and my best of luck to everyone.

In my mom's battle with thymoma --> myasthenia gravis --> glioblastoma, I remember all the frustration with eyelid ptosis (MG) and then aphasia when the brain tumor (and surgery) affected her Broca's area.

I don't have any useful medical information to share, unfortunately... but was just thinking about the aphasia part. Part of her post-stroke treatment should include speech therapy, and if they haven't offered it (sometimes slips through the cracks), be sure to request (demand) it.

As part of that, ask the speech therapists and neurologists if they have any kind of devices (e.g., tablets and software) that can help with communication. If not, maybe there is a protocol or "language" that can be mastered which reduces the errors in communication. In dealing with brain damage in that area, you can't always be sure the patient understood your question, or did understand it and simply replied with the wrong word(s). Some way of asking the same question twice in different ways, or getting a confirmatory answer with eyes blinking, finger movements, etc seems logical. I have no idea if there are standards addressing that, but I would expect anything in that space to be more successful if you start early.

FWIW, a book called "The Brain That Changes Itself" (Norman Doidge, M.D., 2007) had several interesting takes on post-stroke therapy. Many other do as well, but this one was understandable by a layman like myself. https://www.amazon.com/Brain-That-Changes-Itself-Frontiers/dp/0143113100

Thank you again for your reply. Yes, therapy is lined up. Her aphasia seems to be improving. I am looking forward to her labs and scan this week, with all of the fears and "scanxiety" present.
Her onco suggested if her cancer is progressing that he may want her to consider IV chemo again. Of course, her platelets and kidney function being as it is may not allow for that.