I started chemo yesterday - I'm doing 12 rounds of folfox.
Just wondering if anyone experienced any hair loss with this particular regime? I'm not too bothered about the hair loss but would good to know what's in store!
I had 6 cycles of Folfox and didn't lose any hair. It feels different, more coarse and not a bit shiny but it's still on my head. (Albeit going rapidly grey!)
What I did notice is after shaving legs/underarms the hair was much slower to grow back and was softer! So one plus!
I had Folfox prematurely stopped after 8 sessions in mid March. I now have the not uncommon side effect of peripheral neuropathy in my hands and feet. I'm now on my third drug to alleviate the pain, Amitriptyline which sort of works - the actual pain is reduced but the numbness remains (eg I have no chance whatsoever of doing up shirt buttons).
Does anyone else share this unpleasant experience?
I'm so sorry to hear that you have this problem. Hopefully it will disappear completely or become more manageable over the next few months.
I had my chemo back in 2012 but I still have peripheral neuropathy. For most people the problem disappears but I am one of the unlucky ones and I have had to learn to live with it. It is mainly in my feet, and is often worse when I'm in bed. Heat help, a hot water bottle or warm loose fitting socks. I take Amitriptyline but it makes little difference.
I occasionally still have slight problems in my hands, but it is mainly a burning feeling in the palms and the tips of my fingers feel numb.
I know that there are various medication which are said to help, but other than the Amitriptyline I haven't tried any as I was told they weren't very effective, but there may be new drugs available now.
There is a lot of research going on at the moment into these side effects and it is good that you clinicians have listened to you and stopped Folfox. Have they discussed an alternative with you? I was on Oxi/Cap and had six months treatment but following trials the standard treatment is now three months, which is said to be as effective.
I sympathise with you regarding simple tasks like buttons, if it continues to be a problem for you there are companies that make shirts that are fastened with velcro. They look exactly the same as normal button front shirts but make life so much easier. I looked into this when my husband was diagnosed with Parkinsons.
It hope it improve now that you have stopped Folfox but as I say it may take a few months.
How things have moved on since I had my treatment. Many hospitals are now carrying out gene testing patients before giving them certain chemo treatments in the hope of avoiding severe side effects, and I wasn't aware of Neurophysiology - I'll have to investigate that.
I hope that your results are good and that they will be able to recommend something that can help.
Hello, my hands just a little, but my feet feel like I'm walking on rubber balls. It's slowly travelling up my legs, but I won't stop the irinotecan or oxilaplatin.
I'm sorry to hear that you also having problems, but I do hope that you are keeping your chemo team informed about the problems you are having with your hands and feet, as they may be able to adjust your treatment a little.
Hi, Nice thought but no, nothing works, Its a fact of the treatment. Oncologists do not offer any real solutions because there aren't any. I've stopped concerning myself, the disease offers up far greater challenges.
