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Chemo round #2

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Well yesterday was the scheduled start of round #2. But after seeing my labs, the oncologist said my blood work was not good. My hemoglobin dropped to 11, borderline. My WBC dropped to 3, borderline. My platelets are at 200 (ok for chemo). But my neutrophils were at 1 (too low for chemo, they don't like you to be under 1.5). My lymphocytes are 1.3 which is ok. My monocites are ok at .4, which is up from .2 last week, which was too low. My RBC was at 3.9, borderline.

At least I know why I'm so darn tired.

The oncologist gave me 3 options.
#1 Go ahead with chemo if I agree to Neupogen shots (to help bone marrow grow neutrophils to maturation faster and release them into the blood stream) next Monday, Tuesday and Wednesday.
#2 Postpone till Monday - probably still need the shots, but maybe I'd have a little more energy built back up first.
#3 Postpone a full week. Probably wouldn't need the shots.

The oncologist leaned towards #1 or #2 due to my CEA rising as it has been. And that has been scaring me too. Since I’m only on cycle #2, I hate to back off at all. If I waited till Monday, then the next session would have to be a Monday, or possibly push out till Wednesday. But I couldn't get back on the schedule I want for several cycles. It would have ruined our family Thanksgiving plans. And this is likely the last Thanksgiving we will have everyone together.

So I decided to suck it up and go for it. I am not allowed in public places – no schools, theaters, grocery stores, hospitals or doctor’s offices (unless it is my own appointment). It is a good thing I work from home! I am not allowed around sick people.

I told the doctor how awful last time was, and that if I could choose between colon resection surgery and another round of chemo, I’d choose the surgery. And that I knew I couldn’t do more than one more round of chemo if it was that awful again. But he still didn’t want to back off on anything. He said one more round at full blast, and we’d re-evaluate next time. Darn!

So I did get my chemo. But this time we added Emend. ($100 per pill, but right now my insurance covers it all. Cheaper for them to pay that, than the emergency trips in for fluids and IV anti-nausea drugs like last time.)

The neuropathy issues set in right away again. I got a slight sensitivity to cold in my hands. And again, trouble swallowing anything cold. Then my right hand locked up on me – I couldn’t move it or my fingers. After a bit some fingers could move but my pinkie could not. I had to physically move it with my other hand – weird. After that it worked again. Then the jaw pains set in again. (My oncologist told me he didn’t think the jaw pains were part of the neuropathy. I know better because I found a few other people that have had to deal with this too. Not common, but does happen. I’m going to research and send it to him.) He wanted me to take pain killers for it – ibuprofen – but I can’t take that. So he said Naproxen or Acetaminophen. And if that isn’t strong enough, go to the narcotics and take Vicodin or Percocet. No way. Pain killers make me feel so sick. He is worried that I won’t eat due to the jaw pain. But I will. It is very severe at the first few bites, but then lets up. I can tough out the pain. I just don’t want to get to the point of permanent neuropathy in my jaw/face/throat.

Then the good news came! The nurse said the Dr backed off on my 5-FU! He took out the bolus shot of 5-FU to get it going before they hook up the pump. HOORAY! My colon cancer nurse navigator pulled out the numbers and we figured this is a 15% reduction in the total 5-FU I will get. I think he realized when I said how tough it was last time, and he could see what happened to my blood counts with just one cycle, he decided backing off a bit is probably a good idea.

When I was done, I stopped by the bathroom, and I checked my tongue in the mirror – don’t want any thrush surprises this time. But after I stuck out my tongue, it caused weird face spasms. My cheek muscles were pulled upward. I could only pull them down with my hands. I asked Vicki if I looked ok, and she said other than the really funny expression on my face. But I wasn’t making any expressions! And my throat started to hurt more and more. Instead of just having swallowing cold items hurt, I couldn’t swallow my own spit. It was like swallowing glass shards – worse than the worst case of strep throat you can imagine. As we were walking out I was complaining about the face contortions and the throat hurting. An employee overheard us and grabbed a nurse. That nurse brought me back to my chemo nurse. She said I was having an allergic reaction and needed Benadryl. No driving. I have a driver, so OK.

So my 5-FU pump was disconnecte, and I was hooked up to Benadryl. Within minutes I had trouble staying awake. And I didn’t make much sense. I said really stupid things to Vicki. It was weird. It was like getting a hypo. So I nodded of for ½ hour and got the Benadryl, and the throat and face issues got much better. I could swallow my own spit again (but still nothing cold), and my face wasn’t going wild any more. So, I was hooked back up to the 5-FU, we were allowed to go home.

All along the plan was to stop at Good Earth for lunch. But now it was 3:30, the start of rush hour traffic. And I wasn’t certain I could stay awake for lunch. I slept most of the way home. I crawled into bed at 4:30, and was out by 5PM, until 7AM! Crazy!

Round #2 has been much easier on me. I’m beyond tired, totally exhausted. The stabbing jaw pain is the same as last time. So is the problem if I try to eat or drink anything cold – has to e room temp or warmer. And I have a new issue – lots of eye twitching. I have a bit of nausea, and really no appetite. But I’m still eating and drinking, and don’t wish I could just die like last time. Granted I haven’t hit the worse days of Saturday and Sunday yet. But this Friday compared to the last one is much better. So far I have confidence I can do this 10 more times.

Now I have Monday to look forward to. I’ve been told to expect quite a bit of bone pain, probably the most in the chest and back from the Neupogen shots. But it will get my blood counts back up. I can deal with a little pain to keep from getting infections and other problems. I can do pain – no problem – just a little complaining from me. I can’t do nausea that is never-ending, with extreme fatigue, but no ability to sleep. That pushes me over the edge. And if I need extra fluids I can get them when I go in Monday or Tuesday rather than waiting for Wednesday for labs like I did last time. Of course now I know better and would go in for fluids without waiting that long again anyway, if I have bad trouble like round #1.

I did get quite a bit of work in today. But I’m fading. Tomorrow maybe I can work a bit again. Home health comes out to disconnect me at 1:30 tomorrow, and I think that will always be something I look forward to.

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

Hi Kathryn- you've really been through the ringer! The oxy is some strong, nasty stuff, isn't it?? I had a major allergic reaction to it when I had it my first time (which was over 2 yrs ago). They
---------------------
oops- Nov. 7th p.m.(my original post/reply was Nov. 6th)- I just read this thread again and noticed that my full reply never made it- I actually had a much longer reply- problems with the site, I guess.
OK- here's what I tried to say before... I had to be given benadryl on my first time. I was then afraid I wasn't going to be able to get the oxy and was worried since my cancer was pretty bad at the time. I ended up completing 10 treatments. Each time, though, they gave me benadryl and some steroids through the I.V. before attempting the oxy. Even then, they gave me the oxy more slowly, dragged out to about twice as long as the normal time. It made for a very long day in the chemo office, but it enabled me to keep getting it. I then did have another allergic reaction on my 10th treatment- even w/ the steroids and benadryl- so we stopped after 10, instead of completing the standard 12 treatments. I also had the muscle spasms. The scariest was when it happened in my throat while swallowing, which did happen a few times. It did relax after a short bit and I was fine each time. I had most of the "muscle freezes", as I called them, in my hands. They'd just kind of curl in and I had to move my fingers into the open position with my other hand. It was definitely worse when I was cold. I wore gloves a lot and kept a little box heater going in the house a lot. I'd often have to go warm up my hands in front of it and it also helped with the muscle freezes/spasms.

I wish you the best with all this. As awful as it is, this,too, shall pass. Just inform your onc and nurse team of every little side effect. If it happens in your throat and it becomes hard to breathe, maybe it's not something you can continue taking.
If you end up having to ever stop taking to oxalyplatin, irinotecan is something that could work- it's part of the Folfiri treatment. I've heard some oncologists now do Folfiri first instead of the Folfox w/ the oxy because of the problems many patients have with it.
Make sure you're taking vitamin B-6, L-glutamine, and L-lysine to help work on and prevent the neuropathy.

Oh- about the neupogen shots- I have taken both Neupogen and Neulasta. I had a lot of crushing bone pain in my chest with the neupogen- so much that I thought I was having a heart atack and went in the have an EKG done (which was normal). I refused to take neupgen anymore after that. So, next we tried Neulasta- it's just a one time shot, instead of the shots a few days in a row with the neupogen. I was really nervous about it, but I actually had no pain or issues at all with the Neulasta. I think it's probably more expensive than the neuopgen, so it might depend upon your insurance. I just wanted to mention it, though, in case you have any problems- know that they are not the same (& I have had very good response w/ it- my white counts have been great lately- my onc. gives me one every times when I get my pump unhooked, even when my counts are okay, just as a preventative.

Take care-
Lisa

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

I am so sorry you are going through so much. Hubby George had none of the severe problems you describe. The cold thing, tingling in the tongue, little metal taste and the neuropathy were his side effects. He was very fatigued but other than infusion day went to work every day, even with the pump. I will tell you that his first 2 treatments were the worse but gosh, nothing like you are experiencing. He never had the shots. Could you be having a pretty bad allergic reaction to some of the drugs. There was a lady in chemo for colon cancer when George was getting treated who had the same severe reactions you are experiencing so you are not alone in having severe reactions. One more thing his oncologist gave the drugs over 2 days and not all in one day. Day one was about 3 hours and day 2 about 1 1/2 hours if that makes a difference. Hang in there you sound like one tough lady. Take care.

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

You've been throught the ringer with these first two. I never had an allergic reaction, or needed extra fluids, but I had a touch of everything else all the way through. The jaw locking up seemed to go away after the treatment was over, my hands/fingers would get stuck while typing, some days work was a chore, but I went anyway. I had my eyes freeze over and couldn't see which was only for seconds, but scared me at first. Had some nausea somewhere in the middle. One of the most annoying things were leg cramps that I was getting, the kind that feel itchy, yet hurt, and your legs don't want to stay still. The neuropathy of the hands and feet is a given, and I still have that. It was all livable tho. Good luck to you in this cold here tho!

coloCan
Posts: 1956
Joined: Oct 2009

This Wed will be my start date of round two chemo and reading what you've been thru and are going thru is both preparing and scaring me. Best of results for one and all....Steve

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

And I am praying that #3 is even easier. You have been through the ringer! I know about not being able to sleep, that in itself is torture. Hang in there, you will beat this. Marie

sheri22
Posts: 278
Joined: Jan 2009

I know chemo is bad but you have really been thru the wringer I feel bad for you ,
You seem to have a great attitude though. TO be honest with you if I had to go thru all that my 1st couple of times I am not so sure I would have a good attitude, but I will keep you in mind when I go to chemo again and get that crappy feeling that it could be a lot worse,
after what you went thru I cant really complain I hope next round goes a lot better for you

stay strong

Sheri22

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Kathryn,
I know it sucks, but you are hanging tough. I'm proud of you for being willing and able to stay on schedule. I will be praying for some relief for you.

Don

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

I had the jaw pain, when I told the nurse she said she had never heard of it before. I would get unexpected jolts of pain through my jaw when I would try to chew. I noticed it would stop after I would try to chew and than took a break, I could eventually start up eating again and it would be gone. It only happened in the beginning of my chemo and eventually went away. But boy it does hurt and I found it odd no one had ever mentioned it to them. I had an allergic reaction on my last day of chemo. I was in the infusion area when the nurse noticed my face turning bright red, I looked down and saw red botches on my face and chest area. They stopped the chemo (I think it was the Oxy) gave me injections of benadryl and something that sounded like Epi, waited 1/2 and hour and started back up with the chemo. I was fine after that, but I was so scared.

Good Luck with your treatment. I am in MN too : )

thready's picture
thready
Posts: 475
Joined: Sep 2009

Kathryn,
You are awesome. Dealing with the side effects and low blood counts, that is like getting hit over the head while being run over by a bus!!!!
I did great the first day of infusion and did not have many problems until after the pump was disconnected, then the weekend came. I only had a bit of the cold thing going on, but the nausea was aweful. My feet are affected and I had facial spasm. It looked like I was trying to blow kisses. I called the Onc on call during the weekend and started phenergen and zolfran. I know I did not drink more than 8 oz of fluid for most of 2 days. I also know now that I need to have fluids. We are adding more fluids during the 3 days of treatment and home health visits over the weekend for nausea meds and fluids. When I went for my doctors visit this week my onc added 3 addition meds for nausea.

I know this stuff is tough but we got to get through it. I hope if someone reads your stuff they realize that there are options available to help, but I also realize that I don't think we are going to escape this treatment without some residual.
Take care and I wish you the best.
Jan

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

What a nightmare! It sounds like you are reacting to everything. I hope things start looking up for you after you are disconnected today.

I had a few cycles postponed during both of my chemo programs. I appreciated the break. It is one of those good news/bad news things. The bad news is your bloodwork sucks! The good news is no chemo for another week! But I see where you are coming from with your CEA rising. I admire your incredible courage as you stick to this!

I took neupogen while on xeloda/irinotecan. It seemed to work well. I had only minor bone pain.

I'm fighting off a nasty cold myself so have washed my hands thoroughly before typing this note to you!

Hang in there... Rob, in Vancouver

"Yesterday I decided to go to the office.
I got as far as the bedroom door. Chemo strikes."
Peter Jennings

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

What an ordeal you are going through. I'm sorry that you have had such bad reactions to this. I got the cold sensitivity, sick to tummy, fatigue all that other stuff but not to the extreme you had. I was actually going every three weeks instead of two because of my blood counts and I was on the neupogen too. I hated that shot. I would have a hard time just getting out of bed in the morning due to the pain. Every single bone in my body hurt. I hope you do better on that shot than the other things you have been going through. Good luck on round 3.

Kim

shackie's picture
shackie
Posts: 20
Joined: Oct 2009

my brother starts his first chemo weds, he is very scared, dont kno what to xpect. i try to get info for him on this site. sorry ur having so much trouble with it. we r worried cuz he only weighs 127 and 5 7, guess we shud b glad they hav another step. do u kno how many chemos he will get. i kno every1 is different and i just need to ask dr. but y is it they dont want to give any answers, he blows off everything of importance to him. he is a good dr. my brother is trying to figure out if he can hav any quality left without chemo. hes hurting nonstop very bad, kidney infection and xtra pain. wore out, and he is just sick and tired of being sick and tired. i think i just need to b matter afact. there is no other choice, and we r lucky to have it. but hes so scared. cuz in the begining, they said he was to weak to have surgery or chemo., nothings change, he may b a little worse. so guess we will wait and see. but sounds liek he can xpect to b pretty sick. so sorry for all your going thru, good luck to you. i come in here regular cuz my brother doesnt hav hav access t a computer, and he wudnt kno how to use 1. so i apprecaite any info i can pass on to him. thanks

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

It has been tougher than I expected, but the good news is round #2 has been easier than #1 as far as the nausea, stomach pain (I'm still taking the drug like Prilosec), and no thrush. I'm still really nauseated - but not to the point where I want to die like first time around. I can do this! The neuropathy is a lot worse though. I need the oxy backed off some.

I know a lot of people talk about being hyped up from the steroids and unable to sleep. It has been really weird for me. I sleep a lot while I'm hooked up to the pump, so it seems the steroids don't affect me then. But I have trouble sleeping (and wake in the middle of the night without being able to get back to sleep) after I'm disconnected.

I am sorry for anyone just starting into chemo. I don't post to try and scare you. In fact, keep in mind that I am always the oddball. Who else had a PowerPort get infected the same day it was inserted? You can figure that I'm getting through this, as awful as I'm getting bombarded with the regular and weird side effects, and for anyone else, their chances are it will go easier than mine has. YOU CAN DO IT!

I'm off to get my Neopogen - hopefully I don't get too much bone pain from it. I'm pretty good with pain - I just don't do so well with a pile of problems at once that include really bad nausea. So I think I'll do ok with the shots.

thready's picture
thready
Posts: 475
Joined: Sep 2009

Kathryn,
There are several of us who are right there with you in our treatment time line. I do my second round on Wednesday. I know that when I read that someone was successful in getting through a round of this stuff I become more encouraged that I can do it also.

I know that the side effects have been tough and I hope they let up as time goes on but no matter what we do appreciate how you share what is going on-at least I do.
Thanks,
Jan

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