gem ox

Porter –
One thing our Onc said was that blood counts tend to be their lowest 7-10 days after treatment so that’s the area where to be the most careful. I was pretty hard on the family about visiting. Everyone had to have a flu shot this year – including anyone that was planning on visits and then there was alcohol handwash everywhere in the house. Anyone that came in had to use it. We even had the little one due it too. I was pretty OCD about it and upset my oldest son at one point….he came over and was sick so I had him leave…he didn’t think that was fair and I kind of chewed on him about not being fair to dad. I think he gets it now. We also avoided family gatherings and other places that could get him close to someone that was sick.
It worked out well. He only got sick once during the six months of treatment and it was a sinus infection that I am not sure we could have prevented.
Hope things work out for you with this.

KrisV

Porter,
The cold sensitivity SHOULD get better in the next day or two. But don’t rush cold drinks!
I think the normal regimen is every 14 days. The gem/Ox can do a number on blood counts and tired, flu like symptoms are fairly normal. You should be checking your temp daily in case of fever.
My onc said that 14 days is the norm so the blood counts hopefully return to normal. And the tingling stops.
Just pay attention to the tingling and your body. If it feels ok, try to get through this. If it feels wrong, pay attention.
Did you get a card with side effects on it? If not, you should be able to find them online, although we have covered the majority.
Here’s what I remember…

Flu like symptoms
Tiredness
Nausea
Low grade fever
Diahrea
Neuropathy (including tingling)
Sensitivity to cold
Low blood counts

Less common
Hair loss

Very rare
Vertigo
Vision changes

I’m sure there’s more but I can’t remember. This stuff I either watched for or experienced. Or was told would happen.

They told me to only eat cooked veggies and fruit that had an outer shell. For example, bananas were great. Oranges… I washed them and cut with a knife. I washed the knife. I made the second cut. Etc. same with cantaloupe and others. Germs are on the outside.
My blood work never quite got back to normal so I had to be careful. It’s a good idea when on chemo, or any time really, anyway.

I hope you start to feel better in the next day or so.

Porter….thinking of you and hoping the side effects will be at least tolerable. My thoughts and prayers are with you. I have no experience yet with any of the chemo…I start in about a week and a half to two weeks. But my cyber hugs are sincere.

Julie T.

Porter,
I also had the cold sensitivity and neuropathy on my second treatment, if I remember correctly. Plus I battled nausea 6 hours after infusion.
I received treatment during the summer but still wore gloves and heavy socks.
The cold sensitivity was first noticed the day after my 2nd treatment, but I didn’t go to the fridge the first day, and since it was July it wasn’t cold out at all. But boy did I think my hands were being burned! I learned to drink room temp everything! It usually went away after a few days.
The neuropathy built up with each treatment. It disappeared after a few days the first time, then a week, until after 6 rounds I still had it. The gem/Ox was then discontinued for fear of making it permanent.
Remember to keep gloves and warm socks nearby. A light jacket and even a scarf might come in handy. Walking through the refrigerated section of the grocery is tough! I had to wear gloves there in July-Sept. But it beat dropping cold food.
As far as how long it lasts…. The “bad” neuropathy probably disappeared within 6 months. But from the balls of my feet to my toes still buzzed constantly for almost 2 years. I still don’t have complete feeling in my toes, and my fingers go numb and white when cold, but everything considered, it isn’t too bad. I was able to wear sandals last summer, although I called flip flops “flip drags” because my left foot didn’t feel enough to “grip” the sandals.
Matt, I’m sorry Lisa still has it, and badly. In retrospect, I am not sure what I would have done. If I had had ONE more infusion, I MIGHT have gotten my resection, but the neuropathy would have been worse. So I often wish I had lied and gotten one more treatment. Then I might have had surgery. I know, “should woulda coulda!”

Matt…..thanks for chiming in on this. I am so sorry to hear that Lisa is struggling with an extreme case of platin induced neuropathy and hope and wish that things will improve within the next few weeks.
Please give her our love.
Hugs,
Marion