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Chemo failed. Revisiting prior one

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Irrotecan failed.  Lung and liver nodules have grown.  Doc putting me on oxiplaytin.  This is a hard chemo.  I'm scared

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

Hi Vicki

Along with everyone, I was sure hoping that you would show positive response to Irinotecan...

I've not heard you describe how you felt while you were taking that chemo drug....and I know you've read some of the side effects from Oxy.  Having never done a particular anything always makes one concerned and apprehensive, because, well....you just know what to expect.

Let's see if we can get a heads up before you get started.......

They will probably give you a starter pack:  a tote with a blanket, gloves, heating gels for your feet and some brochures....a nurse just handed me mine and never said a word to me about what was coming......I had not even had my port put back in, so they hit me in the vein of my hand...

I know you've got the port, so we're cool there.

Neuropathy is a big concern with this drug....it's platinum based, which means it contains metals...side effects can include tingling in the extremeties, particularly the feet & hands & fingers.  As always, the toxicity is cumulative and the risk of permanent neuropathy begins to come into play after the 8th dose...from that point on, I would make your onc aware of any symptoms you are experiencing.  They can adjust the dosage of course and this would help.

Some people make the 12 cycles...but the majority have to pull the rip cord between 8-10 treatments.....studies have indicated a marginal response from 10-12 treatments and the risk of neuropathy seem to outweigh the benefits of continuing - for some....

It was hard on me, but outside of the neuropathy and about 5-6 days of sickness, I managed pretty well...even stayed at work.  It was the Irinotecan that buried me alive, so don't be discouraged that you won't do well on this combo. 

Let's talk about the side effects....

One of the first things I wanted to make you aware of was the cold-sensation in the throat, should you mistakenly drink a cold or even a cool class of any liquid.  It might feel like your throat is closing up....many have described it as feeling like you are swallowing glass.  It is a weird sensation.  Generally, it is a 7 day or perhaps more grace period where you'll have to drink room temperature liquids, or perhaps even heated. 

So, here's one suggestion that might work for you....

Ask your nurses about Magnesium Sulfate ("The Mags).....it is given by IV during your infusion.  This does not work for everyone (it did for me), but were it to work for you, it would help you with the neuropathy symptoms and you would be able to drink cold drinks right away without the pain I described above.  You'll know if it works on your first treatment...and if it does, it's going to make your treatment so much better. 

Lyrica has also been taken for neuropathy (ask Doc) and B-6 and glutamine and a few other supplements can be taken as well (check with doc.)

Fatigue will come into play, of course...and a general blase feeling for several days.  Even not feeling too well, I was able on this drug to engage and do things, where with the Tecan, it was lights out the entire month.

You've read how we all react so differently to the same medications....this one might work much better for you.

One of the first No-No's is not to take anything out of the fridge....and especially the freezer, without gloves on.  If you attempt to use your skin as the contact point, it will feel like an electric shock.....and when you wash your hands, go as warm or as hot as you can go......cold and even cool water can also give you a hard tingling sensation....like sticking your hand into a light socket. 

I always noticed on this drug that I was always freezing cold.....just a cold feeling deep into the bones (even in the summer of Texas)....so blankets to keep the body warm will be a big benefit.  I used to actually shiver sometimes......it affected me more on my knees and partciulary my kneecaps.....just a breeze would make them ache.

It is a tough drug....no arguing that...but I'm really hoping for a positive response to this transmission for you - and I know you are too:)

I'm so sorry about all that you've gone through.....I've read it all or most of it anyway....it always pains me when folks are trying so hard and hurting. 

We're here with you....and for you:)

Hugs!

-Craig

Trubrit's picture
Trubrit
Posts: 1345
Joined: Jan 2013

I forgot about the nuropathy. I only got it bad in my hands, and yes, gloves are your friend, even during the summer. 

I wear my gloves to the store, cause I've dropped a few things that I've picked out of the refrigorator and freezer.

On one of my bad days (fatigue, couldn't barely move) I dropped a whole big tub of organic yogurt when I got it out of the fridge. All over the floor was yogurt, and I had no energy to clean it up, but I had too. It was horrid. 

The throat constirctions didn't last too long for me, only a few sessions. 

What is your scedule, Vicki? I did every two weeks. 

 

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

I keep hunter hand warmers at school. I had chemo over the weekend, and I know the first few days are bad. My hands get that electric feeling, so I shake up a hand warmer and keep it in my pocket. If my hands get that feeling, I take the hand warmer out of my pocket and pass it back and forth between hands. Works like a charm!

Judy

janderson1964
Posts: 1535
Joined: Oct 2011

For me I thought oxalplatin was much harder than irrinotecan

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

sorry to hear the irritatecan failed.as for me it was alot easier on me than the oxy.i have to agree with janderson on this one.dont want to scare you but we cant sugar coat this.but just remember everyone reacts differently.my experiance with oxy was terrible and i also had a different onc then also.i did 10tx of that nasty stuff and it about killed me.i think i had every nastsy side effect that there was.i did that drug in 2009 and have permenant neuropathy in my hands and feet i have just learned to live with it.now i cant walk or stand for a long period or my toes start to cramp,but at least i am still alive.do what you have to do to keep fighting,we are all behind you.glad to hear from you and ...Godbless...johnnybegood

Trubrit's picture
Trubrit
Posts: 1345
Joined: Jan 2013

I have just finished my Oxaliplatin rounds. And I won't lie, it is a rough ride, well, at least for me. 

Fatigue is one of the worst for sure, along with continuous Thrush (fungus in the mouth). I've been dizzy for weeks, can't walk witout help, definitely can't drive, but I had Vertigo before the cancerr and I think this is why I've had this side effect so badly. I've not heard any one else talk about it. 

So my friend, don't be scared, you will do well and I wish you all the best. 

I wrote down how many side effects I have had, and it was 21.  

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

You're not alone there.....I fight vertigo off & on now.....

It came on the first time I got out of the hospital (9-years ago) and continues from time to time......it comes and goes in waves....with the espisodes ranging from mild to completely debilitating. 

Now, you can say you heard someone talk about it:)

Take care!

 

Helen321's picture
Helen321
Posts: 733
Joined: May 2012

I'm rooting for you!  You can shrink those nodules.  Break out the gloves, the socks and the winter parka mid summer, she's going in.  I'm putting on my cheerleading uniform as we speak.  GOOOOOO nodules, go, no really GO!

ccfighter
Posts: 366
Joined: Jan 2012

Well, I'm chiming in since I just did a few of these oxaliplatins.  I think I will be the odd ball out, but my body is extremely sensitive to chemo and to cancer and to hormones, ect,.  I had cold sensitivity in my hands and my throat.  Swallowing glass, pins and needles in the hands.  Yet, ran hot, needed ac on, night sweats, hot flashes.  But, even room temp drinks caused the cutting of the trait feeling.  Only drank hot tea for three days following chemo, then on to room temp.  Would get back to normal on these things about 8 dahot out.  Btw, had high dose 21 day cycles. Only did 2. Died carbo and cisplatin previous.  

Question:  when does the fatigue lift?  I am almost 2 weeks out and feel like I got hit by a truck this morning when I woke.  Have a pet/ct tomorrow and am a bit worried.  

Vicklig, you will get through thIs.  Not easy for sure, but you have been through a lot and as exhausting as another battle seems, your courage and your drive will see you through.  I know nothing about irrotecan, but I believe you can fight this best back.  Hang in there.  Lots of hugs.

Annabelle41415's picture
Annabelle41415
Posts: 4210
Joined: Feb 2009

This is a very nasty drug but if you are honest and open with oncologist they can adjust it.  Some doctors will give you mag/cal before infusion, but mine would not.  She said that it hindered the effectivness of the drug so there every side effect was felt and I'm still having neuropathy today.  I'm not sure how true that is but Craig told me about it.  Others have already told you what will happen.  Just want you to know that we are here for you. 

Kim

herdizziness's picture
herdizziness
Posts: 3390
Joined: Apr 2010

The most annoying thing to me about the Oxy was not having ice cold drinks.  As others have said, about themselves, I had to drink teas, cocoa, apple cider etc, I would warm my water up for 20 seconds in the microwave at times.  Waiting for the days when you could drink cold drinks again, then it was the best ice cold water in the world.

I didn't suffer fatigue, but am assuming because of steroids.  I had the mag/cal infusions as well.  I was also on Avastin and Xeloda at the same time.

I admit I liked the Irenotican much better.

Just keep in mind the cold problems only last a few a few days.

You can do this, you'll find it isn't as bad as it sounds.  Here's to the Oxy shrinking those dang tumors!

Winter Marie

belindahill's picture
belindahill
Posts: 142
Joined: Jan 2011

Hi, my husband was on oxliplatin first and it reduced his tumors, he had 12 rounds of oxy, you are only allowed this amount. He was then put on irrotecan, the first ct showed progression, and he also found this drug more agressive. Treatment was stopped, there is no more drugs to offer him. He is taking part in a clinical trial at the moment. Try oxliplatin, it worked for my husband. Lots of luck. 

PhillieG's picture
PhillieG
Posts: 4665
Joined: May 2005

Have you been on oxy before? As others have mentioned the main issues for many of us were sensitivity to cold and neuropathy. The range of intensity is anywhere from mild to strong. One good thing is that spring is here and summer's around the corner. I started mine in the winter and it was already cold so that made it tougher. I will say that the sensitivity to cold didn't stop me from having ice cream on occasion. It did slow it down.

Have RFA's been an option or wedge resections?
Best...
-phil

Phil64's picture
Phil64
Posts: 421
Joined: Apr 2012

Vicki,

You will endure through the treatments and their side effects!!!  You are in my thoughts and prayers!  Craig's reply is right on the money. The magnesium helped with my side-effects when I was taking Oxciliplatin as well.

God Bless you!

Phil

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

We will be here every step of the way....I did 8 treatments a year ago and it is still vivid in my mind. I had an allergic reaction #6 treatment and had to desensitize the last 2 treatments. But I made it and so will you! So much good info on this post and so much support. Thinking of you~ Ann

tootsie1's picture
tootsie1
Posts: 5001
Joined: Feb 2008

I'm sorry you have to go through this.

 

*hugs*

Gail

KathiM's picture
KathiM
Posts: 7874
Joined: Aug 2005

It's truly not impossible, dearest....I am sending big hugs....

 

And, the added 'perk' is that stats show that the human body is worth about .97 cents......BUT for those of us with 'Platinum' based chemo....well, I like to think that there is still some sticking to the nooks and crannys in my body....so I am worth much more than most!!!

 

Hugs, kathi

PhillieG's picture
PhillieG
Posts: 4665
Joined: May 2005

So we can add more than our 2¢ to discussions?

KathiM's picture
KathiM
Posts: 7874
Joined: Aug 2005

I actually plan on, later in life, harvesting it all and having some jewelry made!!!

 

Hugs, Kathi

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