Yes David, I do have rather a stubborn streak along with the ability to wear down the most stern oncologist with my many many questions! I find the journey is helped being smoothed with a lovely rose or two...onwards and upwards

Rather pleased my initial question on here has led you here Frank, I'm just sorry that it wasn't discovered sooner for you. Let's hope someone out there may benefit from it and not have to go through your trauma

take care Liz

Good for you Liz, l have the same outlook and am ten years on from a stage 4 diagnosis, who needs fairground rides when you have this,

Still have neuropathy of the feet but at least my command centre has given up on the hopeless task of reminding me until l relax and come to bed.

l have also mastered the knack of not continually throwing myself to the ground. Do l enjoy an active interesting life--you betcha

Enjoy those roses, they were my mums favourites

David

Hi Misha. You make sure that you use the cold gloves and socks. I was not told about these until the chemo was done and have suffered with peripheral neuropathy in my feet and hands ever since. Hopefully Liz will get back to you with advice about extra packs. My infusion sessions lasted over 2 hours each. The manufacturer may be able to tell you for how long the cooling gels will remain effective. Wishing you well for the chemo. - Frank

thanks Frank,

I managed to find a set and have taken the plunge and bought some and have got a second set to have spare gels.

this forum is fantastic for finding out these vital facts and I am so glad you replied

Hello, sorry haven't had chance to reply sooner. Thanks for replying Frank, hope you're doing well and enjoying this beautiful sunshine, has it had a positive effect on your neuropathy at all? 

Hello Misha x The brand I had was Suzi Pads from Amazon. Yes Misha I had a spare pair of socks and gel inserts. I bought a picnic bag from Amazon too and used  normal freezer packs in between the socks in the bag to keep them frozen as my chemo tended to last from 3 hours to 4 at a time. They do unfreeze but better than nothing and I didn't want to buy another set as it's expensive this cancer malarkey.

I'd recommend putting the socks/gel inserts together before you get to the chemo unit and take a blanket to put over your legs. Sounds weird but my legs were cold even in the summer as my feet were frozen (obviously) DO NOT attempt to go to the loo wearing them though, make sure you go beforehand and wear something without a zip in case you do need to go as it's difficult with a canula in your hand and the chemo unit attached.  I also used the hand freezer packs, used shea butter hand cream from Boots about 20 times a day (really cheap one but brilliant) and kept my nails very short, I didn't lose any nails, slight discoloration though. I only painted them with Boots ridge filler and didn't take it off, I just painted over it when it got a bit flakey, gross but it worked for me.

You might need to breathe through the first few minutes of cold as it is a little painful but I'm glad I persevered. I do wish I'd tried the cold cap too but I'm not sure if I could have survived a frozen head, hands and feet hahahaha 

I used the socks and gloves for every chemo, 3 EC and 9 Paclitaxol, I wasn't sure which one would potentially cause neuropathy so thought it couldn't hurt to just do it for  all sessions. 

It's been 8 months since my last chemo and I'm happy to say it does become a distant memory, I know it's all consuming at the time but it will pass and you will get through it. You'll have good days and bad days so just sleep on the bad days and get out in the sunshine on the good days, saying that I felt better for going for a walk even when I just wanted to sleep my day away. 

I am here if you need anything or any questions. Good luck for next week, ask the nurses all the questions you want and if they don't know just ask on here, someone will have the answer. You've got this x

thanks for the reply Lizjon, I went for the Suzzi one too. Im not sure what treatment I'll be getting but I figured it wont do any harm if I do wear them.

thanks for the tips too I will definatley take the blanket and try to use the loo before it all starts.

I hope you are all ok now and thanks again for replying

so I started my chemo yesterday and was advised against using the cold pack as they could worsen the neuropathy ( Im on a FLOT program )

Fingers crossed it goes ok

Hi Misha. How did your first treatment(s) go and how many are you expecting? I hope they will fly by.

FLOT uses 4 drugs and is usually for stomach cancers. Is that what you have? I had colon cancer. My drugs included Oxaliplatin which is in the FLOT programme but the other 3 drugs in your programme were not in mine. I also had Capecitabine but I believe it is the oxaliplatin that caused my neuropathy.

We will all be crossing our fingers with you. The day of your last treatment will be a joyous day of celebration.

I have oesophageal and am on Oxaliplatin  as part of the FLOTI told the nurse at the chemo ward i had the cold pack at was advised not to use them as they would make the neuropthay worse.my hands were a little chilly during the treatment and the pins and needles was very intense,it would have been very painful i think with the packs so I hope it doesnt persist.

4 cycles to shrink the tumour then fingers crossed an op to get it out.

thanks for the reply