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Seeking a second opinion

Posted by ncteacher @ncteacher, Jun 19, 2023

Anyone on the board working with an oncologist at Duke or UNC cancer centers in NC? If so, please post or, better yet, PM me. Thanks!

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

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frygirl777 | @frygirl777 | Jul 19, 2023

You are very welcome! I hope what works for me, works for you too! 💜

REPLY
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markymarkfl | @markymarkfl | Jul 19, 2023
In reply to @frygirl777 "My oncologist says a definite NO to the cold socks & gloves. I bought some and..." + (show)
Profile picture for frygirl777 @frygirl777

My oncologist says a definite NO to the cold socks & gloves. I bought some and now am trying to sell them. I too was concerned about neuropathy. Your oncologist should be willing to reduce the dosage of Oxaliplatin if you begin experiencing neuropathy. Mine reduced my dose by 20% and I have had no lingering neuropathy. I still have tingling up to 4 days after my infusion but you will be susceptible to cold. That is a known side effect of this drug.

I use Boiron Kali Phosphoricum homeopathic pellets for my tingling that you dissolve under your tongue (available on an Amazon of any health food store). It really works & quickly!!!

You should also be taking Vit B Complex daily as this is known to prevent neuropathy. These are what are working for me personally.

Jump to this post

@frygirl777 , the big question is did your oncologist explain why he/she said NO so emphatically, or explain any risks?

For all, I don't remember if I addressed it in an earlier post, but some patients experience a phenomenon called "coasting," in which the CIPN continues to get worse for a while even after chemo is reduced or stopped. One paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480245/

It took several months after stopping my Folfirinox for the neuropathy to resolve completely.

REPLY
1 reply
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masha123 | @masha123 | Jul 19, 2023
In reply to @frygirl777 "My oncologist says a definite NO to the cold socks & gloves. I bought some and..." + (show)
Profile picture for frygirl777 @frygirl777

My oncologist says a definite NO to the cold socks & gloves. I bought some and now am trying to sell them. I too was concerned about neuropathy. Your oncologist should be willing to reduce the dosage of Oxaliplatin if you begin experiencing neuropathy. Mine reduced my dose by 20% and I have had no lingering neuropathy. I still have tingling up to 4 days after my infusion but you will be susceptible to cold. That is a known side effect of this drug.

I use Boiron Kali Phosphoricum homeopathic pellets for my tingling that you dissolve under your tongue (available on an Amazon of any health food store). It really works & quickly!!!

You should also be taking Vit B Complex daily as this is known to prevent neuropathy. These are what are working for me personally.

Jump to this post

I bought everything you mentioned)) Thank you again.

REPLY
Profile picture for frygirl777
frygirl777 | @frygirl777 | Jul 19, 2023
In reply to @markymarkfl "@frygirl777 , the big question is did your oncologist explain why he/she said NO so emphatically,..." + (show)
Profile picture for markymarkfl @markymarkfl

@frygirl777 , the big question is did your oncologist explain why he/she said NO so emphatically, or explain any risks?

For all, I don't remember if I addressed it in an earlier post, but some patients experience a phenomenon called "coasting," in which the CIPN continues to get worse for a while even after chemo is reduced or stopped. One paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3480245/

It took several months after stopping my Folfirinox for the neuropathy to resolve completely.

Jump to this post

He said that the cold could permanently damage my nerves due to being in Oxaliplatin. I was not willing to take that risk.

REPLY
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