Topic: gem ox

Hi all I had my second treatment of gemox today. My first one went well. This time I felt some neuropathy in my hands and feet almost instantly while leaving the infusion room. Is it common for some to get hit that quickly? I would imagine it will get a little worse with each treatment but those who have been on it or have watched someone I am curious to hear your thoughts. It occurred almost immediately after I was done with I fusion. It was also sprinkling and while walking outside wow my hands feet and face started tingling and stinging. Hugs to all.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: gem ox

Porter...only second treatment and already you are experiencing some neuropathy? Make sure to mention to the physician.  I hope that others will come around and share their thoughts with you on this. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: gem ox

Okay. I think it was mainly induced from wet and cold. But yes I will be calling them in the morning. wink thanks Marion.

Hope, love, strength...2013 and for the years to come, Porter.

Re: gem ox

Porter,
I would echo Marion's suggestion to contact your oncologist.  As you know, my wife Lisa underwent 8 rounds of folfirinox prior to her resection surgery (preceded by 6 rounds of gem-cis).  The folfirinox caused neuropathy from the first round and progressively got worse with each infusion.  She definitely experienced the neuropathy during the treatments, although we do know for sure if the culprit was oxilaplatin or irinotecan.  Towards the end of her treatments, the neuropathy was so bad that she needed a wheelchair to get to our car, but fortunately that was only on treatment days and the symptoms gradually improved until her next dose.  I also remember that she experienced temporary jaw tightness and mouth sensitivity almost immediately after the oxilaplatin infusions were started.

Lisa still continues to deal with neuropathy and is so unsteady on her feet that she is unable to drive and needs to use a cane (grudgingly) while out in public.  In hindsight, her medical team believes that they may have pushed too hard and that stopping the treatments earlier or lowering the dose could have prevented the neuropathy that she is dealing with currently.  Although, on the other hand, if she did not complete the 8 rounds of folfirinox, she may not have been able to have a resection so it was definitely a tradeoff for her.  We are confident that Lisa's neuropathy will improve but we have been told that it could take several months or even longer.

Based on Lisa's experience, I would definitely stay in close communication with your oncologist so they can monitor the situation and hopefully prevent any long-term effects related to your adjuvant chemotherapy regimen.

Re: gem ox

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: gem ox

Porter -
I wonder if it is the true neuropathy or the cold sensitivity.....my husband said the cold sensitivity hit before he was even done with the first treatment. It felt like pins and needles in his hands, face and feet anytime he got cold. He did get a little bit of the permanent neuropathy in that he has some numbness now in his feet and legs that was not there before.

He started wearing heavy socks, long sleeved shirt and sweat shirts and even lined pants as he did his Ox through the winter. I even bought him a scarf to wrap around his face. I know if Portland was anything like Seattle yesterday it was cool and raining with a little wind and I know from person experience the wind out of the Gorge can be COLD.

Hopefully it will wear off in a couple of days. The worst of his was usually gone in 3-4 days in the beginning then at the end it was closer to 10 days for it to wear off.

Hope it doesn't get too bad for you. And stay warm.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: gem ox

Matt. Yes I emailed Lisa last night. I was hoping to meet her yesterday but it wasnt a great day for me. Maybe next time. Im two weeks on tuesday ill be there. I already have a call into office and waiting to hear back. Kris yes its pins and needles feeling and it stings real bad. Isthe cold sensitivity a kind of neuropathy? Also while walking around our hotel this morning my face was cold and stung a bit and then my eye starting twitching really bad. Assuming this is all related. I had very few side effects with gemcis so this is all new to me wink as always. Thanks guys. Hugs.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: gem ox

Porter, hope you get to the bottom of this and it's only the milder range of side effects. Still, not fun. Bundle up and let us know what the doc says.

Willow

Re: gem ox

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!"

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: gem ox

Porter -
Yes the cold sensitivity is a type of neuropathy....it's an irritation of the nerves and the cold sensitivity is not a permanent type (or shouldn't be) and the true neuropathy in more permanent or at least long term.
Mark said the cold sensitivity was pins and needles, not numbness although I suspect it varies for everyone. He said that when he drank something cold or drank something to fast it was like drinking shards of glass. He also said a cold wind felt like he was being sand blasted. The cold sensitivity was bad for him from day 1, treatment 1.
Hopefully your doctor called you back and things are feeling better now.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: gem ox

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.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: gem ox

HI all thanks for the replies.  It is definitely due to the cold sensitivity.  I have noticed pins and needles with hands and feet and on my face when it's cold outside my eyes will start twitching and my lips will start to numb up and curl.  It is very bizarre.  I messaged my team and let them know so I am not sure if they will have a different plan for me next time or not.  So far it's pretty manageable just so much more noticeable than after the first treatment.  I also feel pretty tired and wiped out and I did notice at last infusion that my platelets were kinda low.  I was surprised at this given that with this treatment it is every other week so I thought my counts would be up.  Platelets were the only thing that were a little low and the team said this is pretty normal with this regimen even with me coming every other week.  Has others experienced this with this regimen gemox?  So far this regimen is affecting me quite differently than the gem cis so I am learning to adjust to these side effects while still trying to maintain my normal life with everything else going on.  Thanks all.  Blessings and prayers to all of you, always,
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: gem ox

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.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: gem ox

Thank you guys so much for the responses.  Like I mentioned I kind of breezed through the gem cis so I feel like all of this is somewhat new to me as it is a new regimen.  Though I am not scheduled for more than 6 treatments just wanted to be knowledgeable and learn how to manage these symptoms, and thanks to you guys I have great advice.  Blessings all.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: 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

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.