The Colon Club

Hi Janine,

By the day of two before infusion I could tolerate ice cream but my response to cold, hands, face, throat lasted through chemo and about 3 weeks. I carried a bag of ice the other day for the first time in months, am enjoying ice tea. I find one month out that blowing air is still a problem. I notice weird things with my hair too, once when I had it colored it turned pink. The stylist used same treatment and color as she has for year. My skin doesn't heal well if I cut myself doing yard work or something, takes longer still but healing. One month out and feeling better every day. Good luck to you. I got leggings for under skirts, wore uggs out of season.
Susan

Jannine wrote:

NHMike wrote:You might consider electric handwarmers to counteract the cold if the cold sensitivity or neuropathy becomes a problem.

That's a good idea; thanks. I am already considering buying legwarmers for cold weather, ha. I still associate legwarmers with the 1980s, but I think they're a good idea all the same.

I already have a heated footpad I keep under my desk because I tend to get cold in the winter. I'm sure that will help with my feet, when cool weather gets here.

Last winter I had an infusion where the temperatures were in the single digits with a snowstorm. I drove home and my hands were in pain because the steering wheel was so cold.

We also went to the DC area and had temperatures below 0 and heavy winds. I bought two balaclavas and ski goggles and there would be no bare skin when I went outside.

I still have neuropathy a few months after treatment and hope that it eventually goes away but I worry that it will be sensitive to cold this winter.

There are other classes of people that have to deal with similar symptoms like some with diabetes and people with Ranaud Syndrome.

Jannine. I am so impressed with you. I think we are around the same age and FOLFOX really affects me - I can't imagine running or working out. (Then again, I haven't run in a year or two due to achilles problems I got training for triathlon a few years back and from fatigue that I thought was from perimenopause but now think may have been the cancer trying to talk to me - so you probably started out more fit than I did.) In fact, I couldn't even walk or even hold things in my hands during the weeks of Round 2 and Round 3 because the Oxaly made my hands and legs cramp up. Thank goodness they lowered my dose. (Still, I am lucky to get a walk. There's no way the gym was an option for me.)

Anyway, I see you discussed the belching and stomach discomfort. This is me! So, I am wondering about the CBD oil. (Though - I am about to do Round 7 of 8 and wonder if it matters at this point). It helps you? How do I get some? Is this a "special pharmacy" thing? Thanks for any tips.

Also, how do you get your Neulasta shot at home? I need to go get it in the hospital in the same (triggering) infusion suite where I get my chemo. (I'd rather not go there when I don't have to -but, then again,I can't imagine giving myself a shot.)

Just this round, the neuropathy is really noticeable. I now have a numb spot on my left foot that was numb briefly but, after being in our (actually, really warm) pool, it's been numb for hours now. Also, my hands generally feel weird when I touch things and walking barefoot is not comfortable. And, yes, I have been on the laptop now for a while and my hands feel weird after typing for a while. The cold neuropathy isn't remotely as noticeable as it was at first (on 100% dose) but I can see the regular neuropathy kicking in now. I hope it goes away. We will see.

My hair is drastically thinning. I am wondering how long this lasts because I am not sure what I will have left. I lose more every day.

I feel lucky to be doing FOLFOX during this hot summer! I live in a cold climate. I enjoy the cold but can't imagine dealing with it while on this treatment....

My hair thinned during chemo and it has been getting thicker. Not all the way back but that might be an improvement. I'm 3 months out from chemo.

lakeswim, I'm one round behind you on FOLFOX--#8 next week, assuming my platelets hold up--and the hair thinning thing is what I find hardest to deal with. I am TOLD that it stops falling out after #8. I sure hope so. Let us know what happens for you.

boxhill wrote:lakeswim, I'm one round behind you on FOLFOX--#8 next week, assuming my platelets hold up--and the hair thinning thing is what I find hardest to deal with. I am TOLD that it stops falling out after #8. I sure hope so. Let us know what happens for you.

I didn't have any problems with it falling out; just thinning. It was sometimes a nuisance when it got frizzy.

BTW, all of those awful discolorations (turning brown) on my fingers and toes, along with the patches and spots are gone. There are a few spots that remain but the coloring of my fingers and toes has returned to that of the surrounding skin.

Thinning=falling out at a higher rate than usual and not being replaced by normal growth.

Maybe as a guy with presumably shorter hair you don't notice the falling out as much, but I have shoulder-length hair and when I wash it--especially after the on-the-pump 2-day hiatus from bathing--a LOT more comes out than is normal. Like more than twice as much. It comes out in my hands when I am rinsing it and run my fingers through it, and it comes out in the comb or brush.

I don't think that the actual texture of my hair has changed, but it behaves differently because there is so much less of it.

Boxhill - I'm with you. I hesitate to even comb/brush my hair that much these days because it's so alarming to see all that hair. And, yes, in/after the shower is the worst. It just keeps coming - so many long strands. I wonder why this one side effect is so upsetting to me when I can choose so many other ones that affect me more.

lakeswim wrote:Boxhill - I'm with you. I hesitate to even comb/brush my hair that much these days because it's so alarming to see all that hair. And, yes, in/after the shower is the worst. It just keeps coming - so many long strands. I wonder why this one side effect is so upsetting to me when I can choose so many other ones that affect me more.

It’s because we don’t want to look the part of a cancer patient so holding on to every strand of hair we can does make an impact on us emotionally. I can soooooo relate to your last statement about losing hair being so much more upsetting than other side effects. It was a full three months after I completed my treatments (did 8 rounds of FOLFOX with no reductions) that I noticed one day the clump of hair in the shower drain was a “normal” amount.

Hang in there ladies, I know it’s hard to feel like it now, but better days are ahead.

lakeswim wrote:Jannine. I am so impressed with you. I think we are around the same age and FOLFOX really affects me - I can't imagine running or working out. (Then again, I haven't run in a year or two due to achilles problems I got training for triathlon a few years back and from fatigue that I thought was from perimenopause but now think may have been the cancer trying to talk to me - so you probably started out more fit than I did.) In fact, I couldn't even walk or even hold things in my hands during the weeks of Round 2 and Round 3 because the Oxaly made my hands and legs cramp up. Thank goodness they lowered my dose. (Still, I am lucky to get a walk. There's no way the gym was an option for me.)

Anyway, I see you discussed the belching and stomach discomfort. This is me! So, I am wondering about the CBD oil. (Though - I am about to do Round 7 of 8 and wonder if it matters at this point). It helps you? How do I get some? Is this a "special pharmacy" thing? Thanks for any tips.

Also, how do you get your Neulasta shot at home? I need to go get it in the hospital in the same (triggering) infusion suite where I get my chemo. (I'd rather not go there when I don't have to -but, then again,I can't imagine giving myself a shot.)

Just this round, the neuropathy is really noticeable. I now have a numb spot on my left foot that was numb briefly but, after being in our (actually, really warm) pool, it's been numb for hours now. Also, my hands generally feel weird when I touch things and walking barefoot is not comfortable. And, yes, I have been on the laptop now for a while and my hands feel weird after typing for a while. The cold neuropathy isn't remotely as noticeable as it was at first (on 100% dose) but I can see the regular neuropathy kicking in now. I hope it goes away. We will see.

My hair is drastically thinning. I am wondering how long this lasts because I am not sure what I will have left. I lose more every day.

I feel lucky to be doing FOLFOX during this hot summer! I live in a cold climate. I enjoy the cold but can't imagine dealing with it while on this treatment....

Hi Lakeswim! Thanks so much for your kind words. I do get weird cramping in my legs and hands and it seems to be getting worse with each dose, but so far it isn't nearly as bad as you describe. The thing that concerns me is that the water in the bathroom at work isn't even lukewarm, and once my hands get cold in my air conditioned office, it seems like it's impossible to get warmed up again aside from going outside if it's a warm day. I think I am going to need to stay home longer, because I was just miserable the two days I went to work and was dealing with crampy hands there. I don't think I'm getting any neuropathy yet, though, fortunately.

I did try the CBD oil for a few days during and after my 5FU infusion, and I think it does help with my stomach discomfort, although it doesn't seem to be a miracle drug for me. My state is brand new to having dispensaries, so rather than try to figure that stuff out I just ordered the CBD oil online from Charlotte's Web after finding a recommendation for it here. They do seem to be a reputable vendor. I got the oil with the dropper but I have to say I don't like the taste at all (I got the "olive oil" version which just tastes like a joint, to me). So I am ordering empty pill capsules to put it in, so I hopefully won't have to taste it. I've only been taking about 5mg per day so far, and once the symptoms fade I quit taking it.

The neulasta shot is something the hospital was really not sure about; it sounds like a lot of insurance companies won't cover a take-home version. It is just the same as the one I get at the hospital; a small hypodermic that I push into a pinch of skin and then push the plunger to inject it. The needle sucks back inside the case when it's done, although it requires a little fiddling to get it to retract properly. They give me an ice pack with the neulasta because it has to be kept cold, and I store it in the fridge. It says DO NOT SHAKE on the box, sooo I don't shake it. I saw an ad on TV for some sort of slow-release version of it that they stick onto your skin at the hospital and send you home with, but that's not what I have. It looked gigantic in the ad, so I wonder if it's got some sort of built-in refrigeration inside (which would increase the price, I'm sure).

Edit to add: here's a link to the attachable version. I have no idea if it's something insurance would cover. And I think it also wouldn't work for my neulasta schedule, which has a 2-day delay between disconnect and neulasta injection.
https://www.neulasta.com/onpro/

Oh, also a couple of late side effects:

Got my first mouth sore a week after disconnect from infusion #4 (2 days ago). Started doing the baking soda rinse religiously and it has healed up, thank goodness. Will make sure I do the baking soda rinse after chemo regularly from now on. So much to remember, ugh....

My teeth seem really sensitive today. Flossed this morning and had a little bleeding, which is unusual. Ate some nuts and wasn't sure I could stand to keep eating them after the first few bites, because the crunching hurt. I managed to get through it, but ugh.

HI Janine. I had a mouth sore at one point and applied Manuka honey and it really helped it feel better and heal quickly. And I got the bleeding/sensitive gums thing last round (6) but it cleared after a few days. I did brush and rinse often but my Onc says it's the low WBC that causes that and when you go on the upswing, it gets better, which it did for me.

The Neaulasta thing is interesting. Thanks for the info. Kudos to you for injecting yourself. And thanks for the CBD oil info. I'm not sure I'll bother at this point looking into it unless it would be helpful for radiation, which comes next for me, or surgery.

I have news. Due to my neuropathy (feels like I have light socks - or spider webs - around my feet and up into my calves and my hands are weird too), my Onc dropped the Oxaly completely for these last 2 rounds. He said the questionable additional benefit is not worth the real risk (in his opinion) of my neuropathy being permanent - esp since I have it still - as I am about to start a new round. My cold neuropathy wasn't bad in round 6 - even at 75% Oxaly. This means I just get the Leucovorin for 45 mins (vs Oxaly for 2 hours) and then my take home pump is attached.

By the way, my Onc says the neuropathy strikes at different time for different people. Some get it right away and sometimes they don't get it until treatment is completely over. So, it's another guessing game. But I'm relieved they stopped it. Esp since he seemed very confident that dropping Oxaly isn't going to affect my outcome.

Jannine wrote:
Got my first mouth sore a week after disconnect from infusion #4 (2 days ago). Started doing the baking soda rinse religiously and it has healed up, thank goodness. Will make sure I do the baking soda rinse after chemo regularly from now on. So much to remember, ugh....

You might try kefir for your mouth sores. Just take a sip and hold it in your mouth for a few minutes, making sure to swish it around everywhere. It has helped prevent mouth sores in many patients.

In case you aren't familiar with it, kefir is like a yogurt shake. It's available in most grocery stores. Lifeway and Helios are both good brands.

Hope this helps!
Juliej

juliej wrote:

Jannine wrote:
Got my first mouth sore a week after disconnect from infusion #4 (2 days ago). Started doing the baking soda rinse religiously and it has healed up, thank goodness. Will make sure I do the baking soda rinse after chemo regularly from now on. So much to remember, ugh....

You might try kefir for your mouth sores. Just take a sip and hold it in your mouth for a few minutes, making sure to swish it around everywhere. It has helped prevent mouth sores in many patients.

In case you aren't familiar with it, kefir is like a yogurt shake. It's available in most grocery stores. Lifeway and Helios are both good brands.

Hope this helps!
Juliej

Julie is right, it was amazing though I just used plain yogurt. IT WORKS!

Susan

Thanks for the kefir/yogurt tip, y'all. I will give that a try as well. Kefir sounds yummy! I usually have a yogurt every morning, to try to help my gut stay healthy.

As I was getting dressed this morning I realized I had a huge bruise on the back of my thigh; about as big as the palm of my hand. I have no idea where or how I got it. It looks horrible. I'm glad it's in a place no one will see. I understood I would bruise easily while on chemo, but yeesh. I am not the most coordinated person, unfortunately, so I may get more of these.

I showed it to my husband and he was concerned, but then our running joke kicked in and he said "Maybe I should quit kicking you in the middle of the night." This is a thing we joke about when one of us didn't get a good night's sleep. I was like I AM ON CHEMO YOU SHOULD NOT BE KICKING ME. We both had a good laugh at that.