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Neuropathy - The Sequel

Chelsea71
Posts: 1170
Joined: Sep 2012

Steves oncologist called me at work today. I was in the middle of something and had a hard time hearing her. Steve starts Folfox on Thurs. His onc is not seeing him first. Wants to start chemo without further delay. She explained that they cannot give Folfirinox in Ontario. Only for pancreatic cancer. So she will contact OHIP for approval necessary for him to be administered Folfirnox in Quebec. It takes a few weeks (possibly months). In the meantime Folfox will have to due. He needs something. I can see him going downhill fast.

She was explaining that neuropathy is the issue with the Oxy. They don't want it to become permanent. I think she said he was to wear socks and gloves continuously for the two days after infusion. Is this possible? Has anyone done this? I thought people were just wearing gloves when they found the symptoms bothersome. Will have to get clarification from the chemo nurses. Just wondering if anybody has worn gloves and socks for two straight days.

Chelsea

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hi, gloves no, except when he went out when it was cold.  But if you recall from my last post, I had mentioned that Rick wore the LLbean socks 24/7, and that was no exaggeration!  I had to buy him a rubber mat for the tub,then a nice fluffy mat for when he got out of the tub, and then directly into his slippers and socks.

Cyn

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

But can't tell you so quick....and I need to wrap up at work still....I will get back with you tomorrow:)

Have I got a story for you:)

Chelsea71
Posts: 1170
Joined: Sep 2012

Hmmm..... Something to look forward to.

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traci43
Posts: 775
Joined: Jul 2007

I actually wore flip flops in the shower to protect against the cold tile.  I wore shoes and socks or socks and slippers all the time.  Never was told to, though.  I only wore gloves when I needed them.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm normally run very warm by nature:)

And in the summertime in Texas, I run hot...and for good reason...temps avg 100-110 with or without the heat index between June-Sept.

I really can't remember now if I wore gloves for two straight days or not....but I did have to wear them a good deal of the day....for all the normal stuff like handling cold objects or when I had to wash my hands and needed a glove to warm it up. 

But...it really got to me more at night when I went to bed.  I run the ceiling fan at night all night...spring, summer, fall and winter...I've got to have breeze about my face when I sleep.

So, I found that in the morning my hands would be frozen stiff...to the point where you could barely bend your fingers....and if you did, it was with intense pain....felt sort of like arthritis.

But, the cold sensitivity was so bad for me...that just the breeze across my hands made them hurt badly...a pain that felt deep inside the bone.  So, I had to resort to wearing gloves to bed at night as my hands were exposed to the fan breeze...and over the course of the night, it basically froze them solid.

Also, I had extreme cold sensitivity on my legs...particularly my kneecaps...I would be wearing shorts and my wife would turn the fan on (I had the temps way up at the house 80-82 degrees) and within seconds, I was shivering and the pain in my bones was unbearable.

We'd throw a blanket over my legs and it would help deflect the fan breeze less, but you could still feel it; though not as severe.

And as I said, I like it cold...cause I run hot....

Eventually, I found myself (at the height of the Texas summer) wearing sweat pants, sweat shirts....I had the temp turned to 82 degrees, no fans...and the inside of my soul just shivered...was so cold that I really could not get warm.

Even in all the sweat gear, I would climb in to bed (no ceiling fan) and with comforters and blankets covering me....and still be chilled....almost convulsion like when I'd have to get up to go to the bathroom or something.....uncontrollable shaking until I couldn't feel a breeze.

Never that way before.....and haven't been that way since.....not as bad....my knee caps still suffer if they get too cold, but it's got to be cold.....not 82 degrees:) LOL!

Nothing is out of the question....but it's not set in stone I don't think....don't we always go by how we feel anyway? 

If Steve needs to do that, great....if not, cool as well...

Oxy does weird things to the body.....

Now, speaking of permanent neuropathy....start watching for the danger signs about Tx #8....it's sort of like playing Russian Roulette from there....each successive dose has the propensity to solidy permanent neuropathy with each passing transmission. 

Some people make it to #12....and most suffer with some bad neuropathy as a result...

A good percentage of people bail out about #8 due to the increased toxicity and the risk of permanent neuropathy versus the clinical benefit of a few extra percentage points.....that may or may not save us...but could have lasting effects.

I don't know about Steve....but I know you said he likes to use his hands.....9-years removed from Oxy now, my neuropathy is actually a little bit worse than it has been in past years....don't know why.....just the evolution of my biology, I suppose.

But....it's manageable enough...and I don't tingle 24-hours a day...and it buzzes but is not drop-dead intense....so, I was lucky.

Were I to have intense burning and tingling in my fingers.....and then found out the Oxy didn't last that long....and now, I was stuck with this feeling that would not lessen...that could be very depressing. 

I recurred on Oxy....so I would have been disappointed to have paid the price...but was left with that.....I type for a living in my field....and I like my fingers too....and I like not having to settle all the dam time for trying to live.

Now, if he can do 10 tx...clinically, the medical community has established that the efficacy between treatments 10-12 are marginal at best....statistically, not too much of a percentage by stopping a little bit early.  However, the neuropathy has the chance to continue building with each treatment above 10.....and as I said, start watching about #8.

Have Steve pay close attention to how he feels and report all symptoms to onc.  Dosage could be lowered, and infusion time lengthened etc. that might help with the delivery. 

Talk has been against Magnesium Sulfate...but I swear by it....at least for how it helped me manage the cold symptoms.  It doesn't work for everyone.....but if Steve responded positive to it, he would know it after the first infusion.  He would be able to drink cold liquids with ice and not have that bad pain that normally accompanies treatments......which last for upwards of 7-days.

Fatigue is another player besides the neuropathy....but rest, rest, rest is the answer....I was usually sick and bedridden for about 4-5 days...and then got a little bit better.

Folfiri decimated me...and I was bedridden 30 days out of every 30 for six-months...that one just about buried me....it actually really did bury me alive.....you know, Big Billy rose from the ashes of Folfiri:)

Anyway, not as good a story as I promised you....but I've got to write a dud or two now and then, don't I?

Hope some of this will be of value to you and Steve....you both continue to have my best!  

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for taking the time to post all that info Craig. I really appreciate it. Steve is already quite fatigued despite being off any chemo for five weeks. I think his cancer is quite active. It's hard to imagine how will tolerate the oxy considering he's going into it feeling so crappy. Time will tell......

Hope you're doing well.
Chels

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annalexandria
Posts: 2573
Joined: Oct 2011

wanted to clarify for you (and any others interested) about the glutamine...it was a total of 30 mg per day, in three 10 mg doses.  Not sure if I was clear on that.

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maglets
Posts: 2589
Joined: Jun 2006

Chelsea the trickeries of oxy are endless.  I did oxy all winter and spring....it was -30 degrees some days and i swear not much warmer in my old house.  I wore woollen socks and mittens all the times.  i could not even drink tap temperature water.  Jim would heat water in the mirowave and put it in a thermos for me beside the bed.  I had trouble with my eyes and could not really focus to read or watch tely. My nose and eyes dripped and ran.  i had a headache and as Craig says ....super tired.  Not everybody has such a hard time. Oh and even breathing the cool air from fridge will take your breath away and make you feel you cannot breathe so I would think any kind of air conditioning might set off this response. I took AA's glutamine...would have to look up the dose....I also did not make it to 12....you know I can't remember but I think it was 8.  I have very little neuropathy in hands ....some tenderness in the feet.  Don't get frightened Chelsea....just trying to share the worst of it so you can recognize some things.  Craig is right...write down every little side effect

good luck to you and darling Steve

all the best, mags

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hi again, Another tip that I just now remembered:  I used to put a towel in the dryer for a few minutes so that Rick was warmed up when he finished showering.  I also warmed the bed up with a heated blanket before he got into it.  Otherwise, like Craig said, he would just shiver when he got into bed.   I miss him....

Chelsea71
Posts: 1170
Joined: Sep 2012

Awe. Seems like you really went the extra mile. He was lucky to have such a kind and loving caregiver.

hippiechicks
Posts: 509
Joined: Sep 2012

Hi Chelsea ... How did Steve do?? I hope well. 

I as others here had horrific cold sensitivity with folfox and was not able to go outside without being completely covered including a scarf around my face as to not breath in the cold air, only warm drinks, very fatigue, very photosensitive (sunglasses a must at all times during and since).  I had visioin changes as well.  I also had vomiting with treatments 2 & 3 to the point of dehydration (from that point I had a long acting IV anti-nausea which did the trick). It made me very very emotional and cried often and that was painful as my tears felt like rocks coming out of my eyes. 

I also suffered from neuropathy in hands, feet and began to travel to areas such as the top of my head etc.  It also gave me electric type jolts in my hands and feet if I moved my neck downward. (that actually appeared when I finished treatment and has since ended) 

The pain from the neuropathy in my feet was to the point that the socks or even a sheet hurt to touch them.  Covering extremities was essential.  The numbness is still there on occasion as well as in my finger tips, but mostly my left foot.  I found that I had to wear good shoes ... such as Berks or I would be in pain or the shoes would fall off from having no feeling in my feet!!

I ended the oxy on treatment 11.  I did recure as well ... only 2 months off of that drug (with a clean scan the month prior).  However, many people have done very very well on this drug and have had 0 recurrence.  My relatives included.

But, with that said ... every one is different.  Also, I have read that if the person already had some nerve issues (from past injuries) this drug will intensify the affects.  

Anything at even room temp. felt like something was cutting my throat.  ONLY WARM TO HOT ANYTHING! Even brushing teeth!! Oh....and no one told me this until I did it ... don't use mouth wash!!! It burns burns burns!!! Warm instant breakfast drink really helped me keep the calories on and it came in several flavors!!  My hubbies invention!!

Oxy is a weird drug ... a nerve agent ... and does bizarre things to people for sure.  But, it helps lots of people.  My oncologist wanted detailed reports each treatment of what was happening, dose reductions took place as well as delays. My husband would help me keep track of things as chemo brain was also an issue.  A fine balance was done to keep the affects and benefits in check.

I hope this is of some help to you and Steve and he gets some relief soon.  Wishing you both well.

Chelsea71
Posts: 1170
Joined: Sep 2012

Yeah, it went really well. No cold sensitivity or neuropathy sensations. If anything, he seems to have perked up a bit. More energy. Likely due to the dex. Since his diagnosis, I've found that he seems better while on chemo vs. no chemo. Overall, he seems to tolerate the chemicals quite well. I'm sure as he moves forward with his treatments more side effects will develop.

Chelsea

hippiechicks
Posts: 509
Joined: Sep 2012

Glad to hear all went well!  Hopefully he will continue this way!  For me it was right away ... so maybe a good sign?  Smile 

 

Luckygirl2
Posts: 308
Joined: Mar 2012

I wore gloves for about a year at night especially and socks continually, when I went back to work I broughtnfuzzy slippers and socks and still use them. Finally gone out of hands still in feet!

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Hey Chels, How's Steve doing this week?  Has he gotten any of his engery back?  I hope that he's been improving a bit, send an update when you can.

Take care,

Cyn

Chelsea71
Posts: 1170
Joined: Sep 2012

Hey Cynthia, thanks for asking. He's not fantastic. Lack of energy and shortness of breath continues. Still sleeps frequently. Scan results show no explanation for these symptoms. Clot has not grown, no ascite accumulation, lung nodules not big enough to cause such symptoms. I believe it's from all that is going on inside the liver. This has been my theory since these symptoms first developed. I think his tumors are affecting the biliary flow within the liver. My hope is that the chemo will shrink the tumors and the symptoms will subside. I know this is a lot to hope for. As for the shortness of breath, I think it may be his body's way of responding to the fatigue. That has always been his thing. After HIPEC, shortness of breath was his biggest issue. During that nightmarish hematoma fiasco in February, same thing. It's like when his body is in distress it responds with shortness of breath. Actually, the condition he is in right now reminds me of the way he was during the weeks of recovery from HIPEC. I'm sure Rick was the same, as well. Tired easily, turned off by food etc..... That's the way Steve is right now. I hope it turns around. If it does we will go on a trip asap. I am thankful that we did Vegas when we did. He sure wouldn't be able to handle it as things are now. Also, Folfirinox will not be happening. Onc thinks he is too weak to handle it. She says it's quite brutal. Hopefully he will continue to tolerate the Folfox well. Session # 2 is tomorrow.

Chels

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Sundanceh
Posts: 4408
Joined: Jun 2009

Yes...if he gets to a point where he can....take the trip ASAP.

We should have gone somewhere....didn't....and now I'm in so much pain, that even if I could make the trip, I would just be in too much pain to enjoy anything much. 

It's funny, but we always think that Cancer will give us NOTICE on when he approaches....or how long he takes before he begins to incapacitate your abilities....somehow, we think that we will see the warning signs.....things will stay away...and we'll go away and have this magical trip.

In my 9-years with cancer, I've been on one real trip....just haven't been able to do much about it, either will health or money.

Kim is begging me to go somewhere, but she sees that I can't stand up, can't sit down, or even lay down and go to bed, without pain ringing in my ears...I could be in Hawaii or Disneyworld and it wouldn't matter.

So, yes, by all means...take the trip if you can....don't be stupid like me. 

I'm sorry about the Folfirinox...I always suspected it was brutal...how could it not be?  It's combining Oxy with Irinotecan....goodness gracious:(

 Only a person whose metabolism allows them to tolerate chemo very well, would be able to withstand that. 

And the big thing there, Chels.....is what would Steve be even if he could do that?  He's taken such a whipping and it sounds like the onc is trying to look out for him.  Alot of times, they can prolong us, but without some kind of QOL, what is there?

I'm already being driven to bed in pain, and I haven't even doubled my fists to begin fighting yet...that's not a good sign....it feels like it's already too late inside me right now.  Bed bound is existence, but it's not life.  That's where I was last time and I was so fortunate to be able to get back out of bed and try and resume life.

Take the trip!  Somewhere....anywhere...don't delay if the door opens again.

We were planning something with LMS and family for their Make-A-Wish later in the year if we could swing it.....those plans look far away now...LMS called me the other night and said she was excited to go.....she's 4 now and said this would be her "1st Time" :)

And of course, I said, yeah, we can ride the Haunted Mansion and ride the Pirates of the Caribbean....and even Dumbo the Flying Elephant.  We'll walk down Main Street and see Mickey and go to the castle and see Cinderella...

She was all excited about me coming.....said "miss you" & "love you."

I tried to break away and she said she wanted to talk to me 'more.'  So, we talked some more....whatever I'd say, she'd just say...."Yeaaahhh..."

I'm heartbroken about that....but cancer doesn't recognize important life events or anything like that.....doesn't mark down the days on the calendar that are important for you.....it just takes and takes....and we try and take back anything that we can get back.

So, I hope that you and Steve can 'take back' from cancer with your trip.....make the plans! 

 

 

Chelsea71
Posts: 1170
Joined: Sep 2012

You're right, Craig. Throughout this all I thought cancer would give us some kind of notice. I didn't realize things could turn so quickly. I should have realized this but I didn't. My feet have been planted quite firmly on the ground throughout this fight. I have spent very little time focused on a cure. What I had hoped for was a good long response to chemo, allowing for lengthy chemo breaks or even better, some periods showing NED. I have always known that one day Steves situation would worsen. Didn't think it would happen this fast.

For those of you who are putting off doing important stuff until a good time presents itself - please don't wait. Do it now!!! It can all go from good to bad in the blink of an eye.

LindaK.
Posts: 490
Joined: Apr 2013

to you both, Craig and Chelsea, for sharing your stories with me.  My husband just this weekend said he'd rather we take a vacation than have his "delayed" 60th birthday party.  I didn't want to sound too excited or jump up and hug him because I would do either, whichever made him happy, but I'd MUCH rather go on a vacation than plan a big party.  When he planned a big surprise party for me a few years ago and I saw the bills, I said "We could have taken a nice vacation for the cost of this party" so maybe he was actually listening.  I started asking him where he'd like to go and he doesn't really have anything specific in mind.  I want to attend a friend's daughter's wedding in October in NC so I'm hoping we can extend a trip to NC to do something special he'd like to do. The substitute onc we saw last week said it could be months before he's feeling better, he had so hoped to enjoy this summer after his treatment ended.  The heat and humidity we've had the past week or so has really been bothering him, headaches, heat rash, nausea that he hasn't had at all.  We've spent a lot of time inside.

We'll be taking that trip, one way or another!   

XOXO  Linda

Chelsea71
Posts: 1170
Joined: Sep 2012

Great news. I would much prefer a trip to a party, as well. Wait till he's feeling better, but don't wait too long. Cancer or no cancer, we never know what surprises life has in store for us.

I know what you mean about staying indoors. Since Steve has been feeling crappy, my house has never been so clean. Nothing to do but housework. Lol.

Chelsea

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 507
Joined: May 2012

I hope Steve continues to do well on Folfox. I finished my 12 treatments in December 2012. The first treatment was the worst. Nausea, vomiting, unable to eat. From the 2nd treatment on I had dex, zofran, amend and things were a lot better. I had the cold sensitivity but mostly opening the fridge and drinking cold stuff. I couldn't drink cold stuff the first 7 days after oxy then the next week I could. I love my cold stuff, that was hard. The neuropathy wasn't bad for me during treatment but seem to kick in after December in my feet. My feet tingle and feel like they are sleeping all the time.

I definitely would choose vacation vs party. My husband and twin boys and I just got back from Amsterdam, Paris, and a 7 day cruise to Norway. I would not have spent that money if I didn't have stage IV cancer. We made memories that can never be taken away from my 15 year old boys. My husband and I were talking about my daughters wedding 2 years ago and the wedding that lasted 4-5 hours cost the same as our 2 week trip! The trip was much better! Hope Steve is feeling better !

Sandy:)

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Sandy,

Steve has had two treatments now. No cold sensitivity, no tingling etc... He has always tolerated the chemo well. I just hope it works. He is experiencing symptoms from the cancer (liver). No appetite, major fatigue. I am hoping these symptoms will diminish once the chemo starts shrinking tumors.

So happy that you guys had a nice trip. Stage four cancer certainly puts things into perspective. We have done things over the past two years that we would have put off if not for the illness.

Chelsea

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