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Rough week ... would appreciate your thoughts.

jasminsaba
Posts: 157
Joined: Jul 2011

Hello everyone and happy Friday!

Personally, I am very excited that this horrid week has finally come to an end. My mother had her 2nd chemo cycle on Monday (FolFox6) ... first one went without a glitch with minor nausea and some bone pain due to the neulasta shot. Now on to the second treatment - visit with her oncologist went very well. her CEA is down from 3.5 at the time of surgery to 0.09 so that was great news ... she responded well to the initial treatment which also was great and we thought we'd be cruising along. Well, then her oncologist decided to increase the Oxaliplatin dose from 128 to 147 for the 2nd treatment and keep it there for the remaining 10.

That first day is a long day and toward the end of her oxali infusion, she was starting to feel the dreaded throat constriction, averse reaction to sweet anything, loss of appetite, etc. On our way home, she started crying and I knew something was not right because my mom is one strong cookie. I asked her what was wrong and she said she just needed to be left alone and cry for a bit - so she cried the ride home. Once we got home, she was better and even ate dinner and decided to relax a bit. That's when the trouble began ... I noticed she was more fatigued than usual and she appeared to be shaking - I asked her if she was cold to which she responded yes. I got her a blanket and when I went to put it over her, I felt her and noticed she was running a temperature ... long story short, called her doc she suggested I take her into ER because of the chills since she may be fighting an infection. Get to ER, they get her admitted to the hospital to do blook culture to rule out or deal with a possible sepsis. Turns out by the grace of GOD she did not have sepsis but she was kept in the hospital through yesterday to monitor her heart rate (which was very high in the evening of her infusion day) and adminster broad-spectrum antibiotics and fluids since she was dehydrated. My ROCK completed her second cycle by agreeing to keep the continuous pump on throughout this ordeal ... but I am sure this episode took at least 5 years off my life because it was just so hard to see her not being well.

My question to you is: has anyone had a similar episode on FOLFOX? any tips to avoid this in the future? Could this have been a reaction to the treatment or perhaps she did have some small infection that was trying to blow itself out of proportion?

Any thoughts, suggestions, stories, encouragements would be very MUCH appreciated.

God bless you all and I wish every a happy and healthy weekend.

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

yes!
And you are right, it sucks.
I also made it through my first treatment ok. Or so I thought. Went in for my second treatment and my WBC had bottomed out really bad, as in like 30. I also complained about not feeling so hot, like I was getting a cold. HA, the oncologist turned me down for treatment number 2, I said, "nope bring it on!" He looked at me and said, "I am here to cure you, not kill you!" So I went home.
And was back in the ER by 10 that night with a temp of 104- and severly neutropenic. That time I was in for 5 days- and that time I did have a blood infection- wow did they hop when those results came back. I went home on the strongest antibodic known, had to be infused every 4 hours (or 6? can't remember).
I then got the shots to build the WBC for a couple of weeks and never had issues with being neutropenic again.

I cruised along until treatment number 5- never really feeling good, in fact felt worse with each treatment. More flu like feeling, couldn't rest, never ate, etc. Then in the day before treatment 5- my mouth was sore, tongue was swollen. Got some magic mouth wash, a pat on the hand, which really made me feel like a woose. Told to come back the next day, not for treatment but for fluids. By the time I made it in the next day, my mouth was so swollen I couldn't open it, my teeth clenched closed, back molars totally covered with swollen gums. My lips, normally so thin, looked like I had bee stings all over them. That one nurse took one look at me and said I am going to get your fluids going and then you will be admitted into the hospital. I started crying then, because I was so miserable and finally felt like someone was telling me I had a right to feel like crapola. That time I was in for a week and on all kinds of meds. I left without the swollen mouth, but weak and never really rebounded well after that. I started to really look and feel like a cancer patient. That was also the first time the oxi was cut for me.

I got through treatment number 7- then was admitted for the last time for another 7 day period. That time I was so dehydrated that I couldn't stand up, kept fainting. I had a colostomy and lets just say I went through many bags that night, I had sh*t all over the place. That time the paramedics came and got me and I was in isolation. Within 24 hours my mouth was very swollen again. The first thing my oncologist told me was, "you are done with oxi".

My point in sharing all of this with you, is not to scare you! But this treatment is tough on the body, and some of us more so than others. I never felt "good" on chemo- even without the oxi for treatments number 8-12, I still was quite weak, was using a wheelchair out in public, profuse sweating, light headedness, etc.

My feeling with your Mom is she needs some tweeking on the oxi- most of us do to some extent. But to keep in mind she is going to feel like crap, and usually more so with each treatment. Mine was always worse the first 5 days then I would start to rebound some. I always ate and felt my best the day of treatment, then it was downhill.

Others will share with you- and you will find out there is a range of how this chemo makes us feel. I probably am on the extreme!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

How hard it must be to see your "tough cookie" mom feeling so badly. Amazing that she stayed on the pump throughout this ordeal. It sounds like it was a good thing they treated her at the hospital.

Saying a prayer for you both.

Aloha,
Kathleen

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