Thank you for being here for me!

[Tolife_18]

I’m still trying to wrap my head around my current situation, so please forgive me if I’ll repeat what was discussed in my previous posts.

Just to reiterate: in September my 6-month PET scan showed stable disease. 10 days later, the routine spine MRI indicated new spinal cord edema from T3-T4 to T9 and new intramedullary cord lesion at the T6 level with expansion to the cord. During the call with radiation oncologist I mentioned that I have tingling from the waist down. He didn’t seemed too concerned, said to call if I have other symptoms and scheduled another spine MRI 2 months later.

With that I went on vacation. Unfortunately, motor and sensory issues in the left leg and some in the right leg started developing within 10days. After a call to the radiation oncologist I was admitted to the MSK. The MRI showed increased spinal cord edema from T1-T2 to T 10 level and mild to moderate cord compression by T6 posterior displacement and ventral epidural extension. Neurosurgeon was consulted, and I end up having a spinal surgery to alleviate compression following by course of steroids to address spinal cord edema.

While the surgery went well, symptoms of neuropathy didn’t decrease and I got transferred to acute in-patient rehab where I stayed for 3 weeks to literally learn how to stay on my feet and walk. I’m home now, slowly walking with the walker. All the symptoms still didn’t resolved. Unfortunately, I missed 2 weeks of Ibrance due to surgery and myelosupression. Post-surgery radiation was initially considered, but ultimately decided against considering extensive spinal cord edema

Had an appointment with my oncologist who suggested to change the treatment to abemaciclob and Faslodex. The choice sounded really strange to me and I immediately refused as I didn’t see any reasons for a change. We agreed to schedule PET scan early December (3 months after the previous one) and make a decision based on the results.

So, at this point I’m working with at-home therapists, figuring out when I need to go back to work (on short-term disability now), and hoping for a good results 🙏🤞🙏

I really appreciate the opportunity to organize my thoughts and share the details with you. I really have nobody to share with even though I have great support (and a lot of home cooked meals 😊) from family and friends.

Wishing you only best news!

[Tolife_18]

Hi Sandra, excellent questions.

I was wondering the same and asked how is it possible that PET scan didn’t show the changes visible by the spine MRI. The explanation I got was that changes in the vertebrae and intermedullary space is better demonstrated by the MRI rather than PET scan. Still, not 100% convinced.

And yes, given my condition, the correct diagnoses would be lower extremity myelopathy rather than neuropathy. Was trying to simplify things.

Unfortunately, the allowed time off on the Short Term Disability is short (I’m in US). At this point I’m not ready to give up on work all together as I need the insurance provided by my employer. Hope to extend it a bit more.

Hope to get back on my feet as soon as possible as the current issues robbing me of the little time the big C giving me.

All the best,

Polina

[Rubyjude]

Hi Polina. Goodness, you have been through the mill recently. But I like how you have described in such a clear way the issues you faced. And it does help to share, even if it's just the act of writing it all down to make some sense of it.

I sometimes do that, but never actually share my letter with anyone. It's almost as if getting it down on paper somehow makes things slightly less bad as it gives a semblance of some control. Hope things continue to improve for you.

[mariootsi]

Wow. You have been through alot! I hate this damn cancer! Glad to hear though that you are on the mend! Prayers for continued progress!

[Hidden]

Oh my goodness what a time you have had of it.Sounds like you are doing really well with your rehab. Hope you realise your goal of returning to work. Things may take a little while to improve as the oedema can be slow to resolve. Don’t force it and listen to your body. Do you have phased return options at work?

Things to always be aware of with spinal cord involvement are any changes in bladder and bowel and in particular numbness down below. These are signs of compression and need to be relayed to medics as a matter of urgency.

Good luck and keep us up to date with how you are doing

Clare

[jersey-jazz]

Dear one---I am so sorry that you are in the midst of this painful and confusing time. Thankfully, the doctors at MSK will be able to get you through to a better place. I will write you name down on a prayer request on Sunday. I believe it all helps.XXX OOO

[Missmaddie615]

My goodness, what you’ve been through! I’m glad to hear that you are home and rehab is working -may this continue. Sending you a gentle hug ❤️Prayers for you 🙏