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FOLFOX #3 turned me into a tourist!

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

Round #3

So … I did well this round as I didn’t have a reaction during infusion. Woo Hoo! Seems the double Benadryl push, one at the beginning and one half way through works for me. So glad to get through an infusion without a reaction.

One thing though is that I felt crummy before half way … remember I am at a 6 hour infusion now. I actually curled up in the recliner with a warm blanket and fell asleep. Never done that before and that’s really not like me. Always have to be awake and alert and sitting next to the emergency exit. Ha! And my oxy pins and needles started in my toes before I even finished the infusion instead of waiting for the next day as it has been doing. I just felt terrible when I left. Went home and went straight to bed until the next morning. Not like me at all. Usually the dex keeps me up for at least 1 ½ days before I can sleep.

This round the flu like symptoms were even worse and I had a lot of back, hip and leg pains. I’ll have to discuss this with the onc as we are really watching the “spots” in my spinal and pelvic area. Maybe the pain means the chemo is working on them. I finally broke down and took pain meds one day this round. I keep getting the lecture from the onc and pain management team that I should stay ahead of the pain and I know this but, I really don’t want to have to put any more additives in my system than I absolutely have to. It just seems that chemo is enough poison without adding anything else. Plus with my intestinal problems I don’t need the constipation that pain meds add as with the adhesions and hernias that makes it so much more painful. Take care of one pain and add to another? Guess I have to decide at any given time which pain is worse … bone pain or intestinal pain.

So, this time I was getting frustrated with my pump bag and having it over my shoulder like a purse and I finally did something I said I’d never do … I put it around my waist like a fanny pack!!! Yes !!! I went for the tourist look. It’s really quite interesting. Having bought the $1.50 for 2 pair of gloves deal at Target (pronounced Tar chay) I now feel so decadent. I can wear a new color each day of the week! Got so cold the other night I got up in the middle of the night to put a cap on my head as my ears were freezing. So Now I sport my 5FU pump in fanny pack/tourist mode wearing a knit cap and sporting colorful gloves! I think today I’m changing into a snazzy pair of bumble bee gloves … black with yellow stripes. Kind of goes with the pins and needles from the neuropathy. Already feels like I have bumble bees in my gloves!

Oh not to mention, I didn’t realize that you could cry glass shards. Waz up wit dat? I was talking with someone about having Thanksgiving without my friend who recently died and my eyes got a little teary. Well let’s just say that there was no way I was going to actually cry … just a little bit of watery eyes and it felt like I had glass in my eyes. YIKES - don't blink! Damn this neuropathy from the chemo.

So round #3 down … next is #4. Each round is an adventure.

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

I remember George on Folfox and each round was an adventure.

Well, lets see, you got the hat, fanny pack and gloves so all you need is to put on a Snuggie and you can go to the mall and scare little kids. (sorry, couldn't resist).

Seriously, I used to call Oxi "Devil in a Bag". It does get better, just remember the goal.

Take care - Tina

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I totally forgot about getting a snuggie! Good idea

SandMb's picture
SandMb
Posts: 10
Joined: Nov 2010

Hey Lori. Thought I'd tell you what I did to carry my pump after trying my shoulder and carrying it around my waist. I finally figured out it was easier to carry it in a pocket in my pants/shorts. A side pocket down the leg. Without any pack enclosing it. If you slip just the pump itself into the pocket it weighs less, and you don't have to take it on and off constantly to go the bathroom. So I bought cargo pants/shorts in a few different colors and wore them all the time.

Hang in there with the folfox. Hang in there with the neuropathy. Make sure you keep your team informed of what you're experiencing so they can adjust your dosage as necessary.

Susan

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

Thanks for the cargo pants suggestion. I love pockets ... pockets and zippers ... some really great inventions!

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Lori, a nice towel out of the drier or even microwave is a nice what to crawl into bed! Sorry you are having such a time. Best to you. Jean

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

Glad you have one more under your belt and it seemed to have been better for you this time. Isn't the oxy just a pistol to deal with. One day a whole jar of pickles dropped right onto the kitchen floor because of the needles in my fingers - kinda forgot about it before putting my hand on them - yikes. Hope you feel better each and every day.

Kim

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

haha....yup you gotta love that fanny pack worn on the front look.

re eyes....we in the north actually had like frozen eye symptoms in a cold wind....the eyes would tear and then feel sorta frozen....could not go our in a cold wind all winter....

ahhh come on girl....you are just getting into the groovy lets stay warm look....add socks when you go out with your pants tucked into the socks.....you are a brave wonderful soul and I send you buckets of love and hugs

maggie

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

the fancy bag , LOL!
Hugs!

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Lori what day did you have treatment

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Daffodil324's picture
Daffodil324
Posts: 59
Joined: Mar 2010

A year ago at this time I was having chemo. I always wore my pump around my waist, with a loose shirt over it--worked fine for me. I remember being surprised by the pain of tears in my eyes too. Lori-S, have you had the jaw pain when you take your first bite of food? It seemed to go along with the tears pain for me.

graci, the whir of the pump sounded like my digital camera to me too! At first when I heard it I'd look around quickly to see if my camera was turning itself on or off.

I was lucky and didn't have a lot of problems with my hands and feet until toward the end of the 12 treatments. Now, about 8 months after my last treatment in early April 2010, my hands are almost entirely back to normal--just a hint of numbness in the very tips of my fingers--and my feet are getting there. The foot pad behind my toes is still somewhat numb but improving all the time, and the numbness in my toes is about half-way gone and also improving steadily.

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

Monday 22nd with disconnect on Weds. 24th. I even forced myself to do a small turkey on Thanksgiving just to show chemo it can't keep me totally down. Of course I spent Friday recuperating from it.

jararno's picture
jararno
Posts: 189
Joined: May 2010

The pump I had was pretty large....I don't think cargo pants would have worked! I too did the tourist look! I am also OLD and don't care! ( I still use fanny packs on my train and plane trips! )

Great that you slept through some of the treatment...I think as you get more used to the whole routine you don't care as much about what is going on. Easier to relax, plus the benedryl can really knock you out!

The tear thing was nasty too and somewhat of a suprise. Luckily I haven't cried much!

I used a heating blanket, my husband thought I was nuts in the summer, but it made me feel better! The blanket got a lot of use all summer!

I also got a bit of neuropathy in my jaws...not fun!

Always an adventure!

Hope you are feeling better!

Take Care,

Barb

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

That first and maybe 2nd bite thingie!! Ouch ... feels like someone has your jaw in a vise grip. And a super dooper brain freeze sort of pain ... but not really ... but yes kinda.

Good thing I don't really cry. I almost watched a documentary on Barbaro (the Kentucky Debry horse) but, remembered that it would be a tear jerker and decided it could wait until next week to watch. Those new comercials they run against the tobacco companies? Anyone seen them with the popsickles called Shards O Glass? That's what oxy reminds me of. For our non-American friends check it out: http://www.shardsoglass.com/ .

I'm doing better not because things are feeling better but, because I know what to expect and how to handle things a bit better. You guys really helped to prepare me ... thanks. But, until you get to "feel" it for yourself, you just don't really know! I will be glad when the FOLFOX is done. Fingers crossed that it does the job. I don't think I would ever volunteer for oxy ever again.

AnneCan
Posts: 3692
Joined: Oct 2009

I started wearing my pump in a real fanny pack when I began chemo. I bought a black leather one, + usually wear black pants on the days I wear it so it doesn't show up that badly. I am not a fan of fanny packs, at least not for me. But to add insult to injury, the very week I started chemo, an article in the fashion section of a Toronto paper went on about how one should never wear a fanny pack, they are so anti-fashion. I felt like writing in + asking "what if you have cancer + it's holding your chemo, is it still a fashion faux-pas?"

jararno's picture
jararno
Posts: 189
Joined: May 2010

I have never really cared about fashion, but I have caught myself thinking it was odd to see people wearing gloves or sweaters in "hot" weather. Well after Chemo I am much more apt to understand some of the "odd" fashions I have seen in public! I now keep a sweater with me even on hot days and don't care what anyone thinks about my fashion. I was suprised when people I don't know asked about the tube from the pump. I would usually run the tubing under my shirt and put the bag around my waist. I have had people think I had oxygen!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Lori,

Sorry you're having such a time with the oxi. Boy, was I glad to be done with that and thankful that all the long term chemo I've been on hasn't been as difficult to bear as that was. Like was already said, keep reminding yourself of what the goal of taking this nasty stuff is and keep counting down! Make sure you take some alpha lipoic acid (in capsule form) just before going in for infusion and a couple of times a day for a few days after infusion. A chemo nurse told me about it after I was all finished with the oxi, but still having trouble with the neuropathy. Sure wish I had known about it while I was on the oxy! It's supposed to help minimize the nerve damage. I had loss of sensation in my fingers and hands pretty badly by the time I finished 10 rounds of Folfox, but fortunately, it did come back almost 100% by a year later. Again, if I had known about the alpha lipoic acid earlier, maybe some of that could have been avoided. Hopefully, you are also getting the calcium/magnesium combo infused with your oxy to avoid the neuropathy, as well. I don't think most oncs (at least not mine) knew about that when I was getting it in '07- hopefully that combined with alpha lipoic acid will greatly reduce long term problems from the oxy for you.

I'd love to see a picture of you as "the tourist" :)

Hugs and try to stay as warm as possible!

Lisa

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

Unfortunately my onc doesn't feel that Cal/Mag should be added to the infusions. But, I am taking it in pill form in an attempt to maybe help make a difference. I'll be getting some ALA today to add to my mix.

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Lori, sorry you have such a bad time with your chemo. I have my chemo Dr appt this Tuesday to see what my next treatment will be. I remember that pack soo well from last summer. I hope you're feeling better soon! Even in rough times you manage to send out some humor, you're awesome!

Gail

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

And I remember....yes, it WAS nasty!!! All of it...

But, like you, I always tried to laugh at it...made it less real and more managable...

My first infusion/pump was dc'ed the day before Christmas day. I remember laying in bed, Christmas day, with friends and family coming in and out. I said to my one friend (double breast cancer survivor) "I'm not sure I'm going to make it!"...."Sure you are", she said, "you already made it thru one!!!!"

Hugs, Kathi

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Lori, you crack me up. Can picture them bumble-bee gloves and a snuggie!
I really dont wear the pump (hate it and dont go anywhere on pump days) I just carry it like a purse by the strap.
At home I leave it lay on coffee table or puter desk. Have about 10ft of line with it so can move around some.
Just sometimes I'll go to walk to another room and forget about it till line runs out & YANK, off the desk it comes &^%$#@!(*

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

I used to have that problem with leaving my pump too. That's one of the reasons I gave into the tourist loook. I used to get up in the middle of the night and forget it. Yank!!! and the day after infusion my port site starts to ache a little so that doesn't help. I just wear it around my waist to bed since I have a colostomy, hernia and adhesions, I can't sleep on my stomach anyway so it's no big deal to have it around my waist while I sleep. I sure takes care of being yanked back to the bed in the middle of the night.

Eltina21's picture
Eltina21
Posts: 174
Joined: May 2010

Hi Lori,
I truly know how you feel. Hang in there. I am thankful to have completed 12 rounds of chemotherapy. I have gone through the hair thinning, and I am still going through the neuropathy. I have a very dear friend who has breast cancer with mets to the brain. She lost all of her hair and has never looked more beautiful. We see her spirit and not her hair. I went to the dollar store and found gloves in every color. I matched my outfits and I have started a new trend at work. I believe that the gloves give a classic look. For the contipation, I would drink warm prune juice. For nausea I bought chewable Ginger from the health food store. I also felt the effect of crying, it did burn my eyes. I just wanted to say that this to shall pass and I really hope that you begin to feel better. I shall keep you in my prayers. Throughout my chemotherapy, I went to work everyday except the days that I had chemotherapy. I even worked with the bag on. You see I the breadwinner for a family of 5. My faith truly kept me going. I rang the victory bell on November 4th at St. Agneas Hospital and I have been declared cancer free. I am here any time. You see this disease took the life of my mother, her brother and sister. I said to myself, it is not going to take me. So take care and have a great day.

Sincerely,
Karen

Lori-S's picture
Lori-S
Posts: 1286
Joined: Sep 2010

For sharing your experience and your warm caring words. Chemo is just not any fun for sure! I also lost my birth mother to this cancer. I am so happy to hear of your success and ringing that bell. Congrats!

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