OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
peripheral neuropathy & ice therapy
Hi all! I’m looking for some info on using cold packs on hands & feet during treatment to help existing neuropathy.
Last year, I was diagnosed with Stage 3b high grade serous. I had in total, 9 paclitaxol NAB & carboplatin treatments, ending in Dec. Plus surg in there of course. In January of this year, I started maintenance of bevacizumab. I ended up with severe neuropathy of feet & hands. Feet are affected the worse. I have drop foot on one side, my balance is bad, they feel frozen but are actually not cold at all. Lots of numbness. I’m on gabapentin, have been doing acupuncture, physio & reflexology to regain normal function. I have had improvement! I still don’t walk great & at times my balance is wonky but it’s better!!
Now here’s the issue. My CA125 was starting to climb & CT showed some enlarged lymph nodes so back to chemo. I’ve been deemed platinum resistant so my oncologist is thinking I’ll be doing Caelyx.
I don’t want to lose what I’ve regained with the neuropathy! Any tips on how to use the ice therapy, did it help if you used it, etc. Basically any info is appreciated 🩵
BTW, my hair is just starting to grow back so if it goes again, I’m ok with that - so no cold cap for my head required. 🧑🏻🦲
Comments
-
Hi @leanfries,
Sending you all of the positive energy and strength for your upcoming chemo sessions. My mum experienced neuropathy after her first chemo infusion, so we got her hand and feet ice mitts. We purchased them on amazon, you can search for " chemo ice mitts hand and feet." We got ones with an extra pair of ice inserts as you want the mitts to last for the length of the infusion, we would carry a small cooler box to keep everything as cold as possible. The nurses advised her to start wearing the mitts 15 mins before the infusion starts and to keep it on for the entirety of the whole infusion. We would switch out the ice inserts in the middle of the infusions. My mum did not particularly enjoy wearing the mitts, but once she started her neuropathy did go down. She also only wore the mitts during the Taxol infusion. Do let me know if you have any other questions!
1 -
What an excellent tip/trick and where to find them too. Thanks @SM222
Great info for many going through the same thing. 🤗
0 -
@leanfries I can totally empathize. I have stage 3/4 ovarian cancer but they aren’t sure if it is high or low grade serous. I have really bad neuropathy in both hands and feet from the chemotherapy. Your description of frozen feet is so apt. I am never sure where or what my feet are doing and plus extreme vertigo I need to use a walker to prevent falls. My fingers burn all the time and I am dropping small items all the time. It can be frustrating. I did talk to a cancer clinic nurse and she said there is very little that can be done…actually nothing except maybe changing the dose. She did suggest using gloves to handle very cold items as well as hot ones. I hope your neuropathy clears up quickly.
1 -
Hello, all!
My neuropathy isn't nearly as bad as others' is, but one thing that brings me at least temporary relief is massage. Also, it took me only 50 years to figure out why people love pedicures. I finally started getting one monthly, and the massage, wax, and lotion all feel so good. I'm afraid of cutting myself when I cut my toenails since I don't have full sensation in my feet, so having someone else to cut them is a bonus.
0 -
@FrogProf Totally agree about pedicure. I treat myself to them often. So much better than trying to cut them myself. Plus a little pampering is more than ok every once and a while
1 -
I am very late to this topic however I experienced PN during my initial chemo infusion. If anyone is searching this topic in the future, my experience may be helpful.
I asked my Onc-Gyn about ice therapy and she said it was a 'myth' that it worked and that none of the doc's in her clinic had read any evidence to support it's effectiveness. She did however say if I wanted to give it a try to go ahead as there was no harm. I used my own makeshift ice packs (there was ice available in the infusion area). I filled Ziploc bags (large ones and medium ones) with ice and kept my toes and fingers "on ice" starting 15 min's prior to my Paclitaxel infusion and throughout. For my toes I would rotate between the ice bags being on top of my toes and then placing the ice bags under my toes. Rotated every 30 minutes. I also kept the bags on for 30 minutes post the infusion. My PN pretty much disappeared by infusion #3. I maintained the icing regiment throughout my six chemo's.
Personally I feel that it helped and using the Ziploc bags enabled me to ice without having to invest in any special equipment. I hope that information may prove helpful for someone in the future. As always, check in with your medical team for advice to ensure there's no harm to you if you intend to try icing (I know everyone's situation can be different).
Always Learning
0 -
Interesting. Differing views for sure from medical teams. I, personally, did not have to ice nor experience the neuropathy (thankfully). I do know from many other posts on here that a lot of ladies have tried it and it has helped them. I feel that there are treatments like this that are at a very reduced harm level that one goes with what they feel is best for them. Worst case scenario for icing is that you are cold for a little while. 😉
Myth or no myth the benefit vs harm factor comes into play. Discussing with your medical team ways to reduce neuropathy issues is always a great idea. One never knows what answers they may have or some trick another patient tried that really worked for them and they pass it along. It is why forums like this are great. One can type the key words into the search bar and find out all the ways others have tried to help themselves either prevent or assist with the neuropathy issues. There is a wealth of info out there. I only wish that it wasn't a symptom that many of you experience and have to suffer through. Perhaps one day that will be a reality. That would be nice for so many! 💕
1 -
Hi,
I am doing ice therapy on hands and feet. Luckily, It was offered at my oncology centre and the nurses are so supportive changing the ice packs and getting the booties on. I had very minimal symptoms in both ring fingers after the second cycle that reversed and nothing since.
I also paid for cold capping which didn’t work for me and needed someone to attend the long chemo days with me. I wouldn’t discourage anyone from trying it, but it is an extra burden and expense.
Good luck0 -
Thank you @mcb for the insight on the ice therapy you received. This is why I love this forum so much. There is no "one way" of how support and therapies are offered. By learning through members of this forum, what they have used, tried, had available to them etc. helps us all be more educated as we venture through our personal journeys. I wouldn't even have known ice therapy was even a "thing" if not for reading a posting about it in OVdialogue.
I'm sorry the cold capping didn't work for you. I didn't try it personally however I saw a few ladies around me giving it a try during their infusions.
Thanks for sharing.
0
