Neuropathy or CIPD???

Hello, I have what they call ‘late effects’ from the Chemotherapy and Total Body Radiation for my Bone Marrow Transplant for my AML Leukemia in 1981. My Breast Cancer DX in 2007 was a ‘late effect’. The list is long. My Neurologist said the Office will be calling me to set up appointment for the Spinal Tap. Then go from there. Sending prayers your way. 🙏🏻

Hello John I want to thank you for that link to the video. So informative. I learned much from watching it. Thank you again.

Hello @jedge54 How are you doing? Did you start Riliprubart? I saw an ad on TV the other night for a self injection drug for those with CIPD. I didn’t get the name. One of my sisters and her husband also saw the ad on TV. To update you, my Spinal Tap is finally scheduled for next Thursday 6:30 to be at Hospital. Procedure is at 8:00am. I think I mentioned to you that I will wait and see what the results are and if positive I think I might go to where you go University of PA.
Sending healing thoughts and prayers your way. 🙏🏻🙏🏻🙏🏻

Hi oliver;
Yes, I began the Riliprubart trial 6 weeks ago. Important: For the first 24 weeks, you will receive either the drug OR a placebo. You and your medical team at Penn will not know which one you are getting. After 24 weeks, if those receiving the drug show some degree of improvement over the placebo group, everyone in the trial will have access to the drug for an extended period at no cost.
I don't remember if I mentioned another drug trial recently announced called Captivate. If the Riliprubart trial does not work out, you could investigate Captivate.
I want to emphasize that your upcoming spinal tap (lumbar puncture) should definitely be done with radiology assistance (also called image-guided).
Good luck, and please update me on how this works out or if you have any other questions.
John

Hi John, how are you doing on the 6 week trial so far? 🙏🏻 I am waiting for a call back from the Hospital regarding the Radiology Assistance for the Spinal Tap. I will keep you updated. 🙏🏻🙏🏻🙏🏻

Hello again John. They called back and confirmed that the Spinal Tap will be Radiology Guided. I will have an I.V. , so am going to ask for a sedation put in via I.V. based on my prior Spinal Taps,
(maybe 4 since 1976 ☹️).
Always had a sedation. She mentioned they are doing lidocaine. That isn’t enough. Not even when they did my Bone Marrow Biopsies. Ouch x 20!!

Oliver:
I have not had any indication that the Riliprubart is working, but my Neurology team said it would take much longer to show an effect. Also, I could be on the placebo which means I wouldn’t have any positive effect from the drug.
So only time will tell at this point.
John

If you are experiencing Chemotherapy-Induced Peripheral Neuropathy (CIPN), the Mayo Clinic is conducting an "ON LINE" Clinical Study on this subject matter. You do not have to go to a physical facility as it is all done on line. For more information you can call 904-953-5102.

🙏🏻 you are not on placebo.

Hello Diaz. I do not have CIPN.
My last Chemo tx was 2/5/2008 for BC never had Neuropathy. Not even in 1981 for AML Leukemia. I then had Total Body Radiation and mote Chemo to prepare for my Bone Marrow Transplant from my Brother (donor), had to be sibling or blood relative back then. So new. In any case. 2008 no Neuropathy. Two nieces Weddings in 2010 I was dancing in 5” heels I kid yo not. It started in my right toe in March 2011 right before Bunion, hammertoe surgery. Fast toward summer 2023 Stone Harbor with family. I needed help leaning on sisters walk fingers felt like pricks. Etc… not Neuropathy. EMG done in 2023— Abnormal! The Neurologist that did test wanted Spinal Tap. My Neurologist, for whatever reason ‘wasn’t ready to go that route yet’??? This year he says EMG I said why we did that. I want to no again. What was result back 2023? He- Abnormal!!! Now here it is 2 years later. Lost 2 years. Abnormal again. Now Spinal Tap. Not Neuropathy.