Life hacks for living with cancer

This was a really good thread to start!

I had my 4th chemo on the 20th and I really was expecting the neuropathy to re-intensify like it did after the 2nd and 3rd rounds.

I had a my 2nd B12 on July 9th and I'm taking about 3000 mcg. sublingual B12 daily. I also wear hypothermia slippers and mittens during treatments and for pain as needed. The cold seems to calm the damaged nerves down.

It could be from being switched from Taxol to Taxotere after the first treatment, but I'm really starting to a be a believer in the other two interventions. What I had read about B12 said their results took about 60 days to appear and it's been almost that long for me and my neuoropathy is not only not reintensifying, it's almost gone!  I've been doing my happy dance even though a bit of dizziness, heartburn (not acid reflux, though), and bladder irritation and constipation for about a week after a treatment are still things I have to deal with.

I found the hypothermia slippers also very helpful for relieving the burning pain I had all the way up to my knees and was using them between treatments for that issue and seem not to need them, even at night, anymore. They were worth the expense for just that because I really had trouble getting sleep with the pain and would just be crying from it and the thought it might get worse and be permanent. 

I also find using an ice bag on my head helps when it feels hot. I still haven't shaved what hair I have left because I'm hoping it offers some protection from irritation, especially at night moving around with a pillow. So far, so good. Lots of skin showing through, but what's there is all mine and gives me a bit of a boost when I look in the mirror. 

The theory behind using hypothermia is that it slows down delivery of the chemo drugs to the tips of your fingers and toes helping to protect the nerves there. They also make caps to help you keep your hair through chemo, but you have to use those right with the first treatment and I didn't find out about them until too late for that. My gyn onc says that the caps don't always work to keep hair from his experience with them anyway.

There are different versions of them at different cost points and means of keeping them cold during infusions. I found mine on Amazon, keep them cold in a chest freezer and take them to chemo in a cooler with dry ice. I need 4 pair of each to last me 3 hours because you are supposed to wear them 15 minutes before the chemo starts and 15 min. after its done. (Just the chemo drugs). It helps to have someone there with you to change out from one pair to another quickly and to just help out when you can't really use your hands for anything if you use the mittens, too. 

I don't think the hypothermia got rid of my neuropathy, just that they helped to keep what I had from getting worse with each treatment.  If you already have neuropathy, getting a pair or two of the slippers might be worthwhile to try to see if it helps with the pain you're already dealing with. The cold felt so good to me when I used them during chemo; that's why I tried them outside of treatments and it really helped me a lot.

The slippers, mittens, and caps are like gel ice in a soft fabric shell shaped for wherever it's meant to be used. They can be used cold or warm (microwave), but I've only used them cold. Warm foot baths seemed to make my feet hurt worse. They are well made, but I still think they charge way too much for them. About $100 or less/pair on Amazon, but still cheaper than what I saw elsewhere for renting just the caps. Some places include coolers with some kind of hose that keeps one cap cold however long you need it to, but that would have run around $3000 or $4000 for 6 cycles of the chemo drugs. I wasn't going to spend that much to save my hair! The slippers were definetly worth it to me the most because my feet and legs were the worst pain, worse than what I had post-op for an open abdomen.

I stopped taking the B complex with B6, Folate, and B12 because you can get enough of the B6 and Folate from a multivitamin and fortified foods you eat and can actually take too much of those. The B12 is safer because your body doesn't it store it the same and that's the one that makes the difference with your nerves and is most likely deficient because of our age, cancer, and chemo converting most of it to its inactive form. Maybe someday, they'll take the time when we're recovering from surgery to be sure we're ready for chemo by testing us first for things like blood sugar and B12 to protect us better from getting CIPN, but the standard test for B12 doesn't distinguish between active and inactive B12 in our blood and is pretty much of no help. There is a new test out there that tests just for active B12, but it's so new that I don't think that there are a lot of labs doing it yet nor does insurance cover it. I had to push my primary a bit to give me the B12 shots based on what I found out about it, but it was worth the effort and now my gyn onc is looking into it more for his other patients.

When my neuropathy spread to my hands my Doc took me off taxol to taxotere.