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Old 10-17-2023, 02:42 PM
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Lara Lara is offline
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Join Date: Sep 2006
Location: 16.9203° S, 145.7710° E
Posts: 11,010
15 yr Member
Lara Lara is offline
Legendary
Lara's Avatar
 
Join Date: Sep 2006
Location: 16.9203° S, 145.7710° E
Posts: 11,010
15 yr Member
Default the short version

Actually I'm pretty new to neuropathy compared with many here but always read here when I could. Lots of invaluable information has been posted over the years. I've only had the PN since around August 2019. I have been in treatment for metastatic melanoma (stage 4). So it had spread in many places.

The first treatment that was tried was a combo of 2 drugs called Targeted Therapy. They target specific genes and the MEK protein. I have mutation in BRAF. I wasn't able to continue that after about 10 days approx. as it made me extremely ill in hospital. Dabrafenib and Mekinist.

The PN began almost immediately and it was sudden and horrible. Swelling and pain started in toes and up legs, same with finger tips and lower arms. I then began a long and exhausting few years on a different treatment called Keytruda, an Immunotherapy. Currently "no evidence of disease" but scanned constantly. Drives me insane. My neuropathy hit a plateau for some time but has progressed again now. Up until not long ago I was able to do pretty much everything. I just worked around my neuropathy flare ups. I think the physical hard yard work that I did actually helped me through the past few years in treatment. Kept me strong physically plus eat to suit my body the best that I can. That helps, plus good shoes!!! Now I can't do so much unfortunately.

I've been around for a long time on the forums as have many others. Many of us had children of the same age and we were supporting each other as they were dealing with certain conditions and differences that were affecting their lives. Some of us hung around dealing with our own conditions.

thankyou for the thanks and for asking. Always happy to try to help if I can.
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