The most difficult decision I will ever make

JanJan63

Folfox and nausea?

Rod brought up a point that I'm curious about. Folfox is rough but how many people experienced nausea with it? I didn't. Fatigue, yes, and the cold sensitivity. The neuropathy came later. But I don't think nausea is a side effect typically, is it? I'm curious as to if that's typical or not?

Jan

Phoenix_66

manapart said:

Yeah,

Im sure its doable. My mind is probably inflating the severity of its side effects. (OCD). Most say it gets worse each cycle. I always think back to the time I was given citalopram for my anxiety. I took my first pill that night, had to be rushed to the hospital 3 hours later. Im just super sensitive to certain things. If there is a reasonable path forward without having to be on it I will take it. Otherwise I will see soon enough. I have already committed to doing what is necessary. I just want to collaborate with my ongcologist to find the right dose, combination of drugs and therapy to give myself the best possisble chance to beat this and stay on a regiment I can tolerate. Even if its rough. He gave me more of a ultimatum and reminding me what the consequences are. Um, its spreads and I die slow and painfully in the near future, good to know doc. My biggest concern really is neuropathy and extreme nausea. Im fine with fatigue, sleeping is a hobby for me.

Not terrible for me

Rod, folfox was not as bad for me. I was slightly nauseous but never vomited. Just kinda felt icky. Two days after treatment I was back to normal. I was able to continue working throughout except for treatment days and even mowed the lawn and went to fire calls with the pump in my pocket (Maybe not the best idea).

Joan M

I have more nausea with Folfiri

The Folfox caused other problems, the electric shock sensations and blurred vision day of treatment, had some nauseau but seemed much less than withe the Folfiri.  I didn't have as much neuropathy as people describe either.  I was only on Folfox for 8 treatments and the neuropathy lasted a bit longer with each treatment but was mostly gone by next treatment with a bit of residual numbness for a couple of months.  

There's a definitely a difference in side effects depending on which chemo you're on.  

Looks like some people don't tolerate the chemos pretty well and others suffer.  Hard to know how it will affect you before you take it.

 

flutemon

manapart said:

Its tremendously profound

to have so much of your life ahead of you, so many plans and so many things you were hoping to do all of a sudden halted. And now you have to sit and cope with your own mortality and find out how to live and what to do with so little time left. I envy believers because that have a strong conviction that in a lot of ways mitigates the fear and anguish of dying. They really dont have long drawn out deep thoughts and conversations about the prospects of a afterlife, or what happens to your consciousness. Not having a core belief and knowing is tormenting in a way. 

95% of the peopele ive talked to said Folfox almost killed them. So im not looking forward to taking it, and im still considering whether i will or not. I already have existing physical impediments so I dont want to find myself having to endure protracted bouts of violent sickness. 

Whatever happens happens and I have to deal with it one way or another. I dont have much control or choice or anything. Thanks for yoru commments and encouragement

I did 6 rounds of folfiri

I did 6 rounds of folfiri with Avastin and the only side effect I ever had was losing 1/2 of my hair. I've just finished my 2nd of 6 folfox treatments (mop up chemo after liver resection) and have had no side effects to this point.  The pre-meds I was given seemed to be very effective, and I've stayed super hydrated.  And all of this being stage 4 and living with the effects to my body of severe polio as a baby and chronic fatigue assoociated with post polio syndrome. 

 

I definitely feel you.  For me, the fear of the treatment was much worse that what the treatment actually was.  I feel a little guilty because to this point the treatment road has not been difficult.  But even though I'm 62, I've got way to much life left to live!  My daughter just gave me grandson number 3 and I want to be around to help influence him and his 2 big brothers. 

You may not be able to control the situation or treatment, but try to find something in all of this that is within your control. Focus there.  Hold on there.

feckcancer

manapart said:

It's all of it...

But with mental illness its x10 and in some cases irrational and obsessive compulsive anxiety. Of course when something as traumatic and someone telling you you have cancer all of a sudden when you thought it was just inflammation, a hernia or a ulcer... time just stops. You have stage 4 cancer. Basically subtract 25 years from your life. Your usual life is upended and over perhaps and a ton of emotional, mental, physical, financial, time and family resources are now being redirected to this disease. That is what hit me intially even before I thought about chemo. And then i researched chemo and at times thought to myself im not sure what is worse, the cancer or the chemo. 

 

Now as a 40 year old agnostic who has lived a simple life where there is a lot of grey, not claiming to be a bad person but certainly not a saint. Now I have to cope and obsess with my own mortality, ponder things like afterlife and NDE. Will everything just fade to black or with my consciousness end up somewhere even worse. Reflect, and watch youtube debates between scientists, athiests, rabbi's and christians. Before each appointment or scan picking up my dads old cross necklace thinking does this in any way matter wearing this. Trying to feel something. Force myself to believe. Does praying matter? What do I believe in? And again add in the fact I have depression, OCD and anxiety disorders and well, it hasnt been a picnic and I dont gain much clarity or either side of the spectrum. 

 

Yeah you can survive chemo. But it just goes back to my previous point. To what end. Its not a cure, its a roll of the dice. There are long term permenent side effects as long as the debilitating short term ones. People still dont have the taste back in their mouth. 3 months after treatment still tired, and cant feel their finger tips. I can only speak for myself because im mentally ill and physically weak and compromised. So having my body assaulted in high doses with this as some would say, "venom" is something of course I have great concern about. I have gastropareis/paralyzed stomach. Will it make that wose? I already have neuropathy and it can drive me nuts at times. Will treatment cause more nerve damage, will it make my tinnitus, neuropathy, kidneys worse? Ive read about mouth sores and chemo brain. Lord knows my brain is bad enough already. It pretty much supersedes and is correlated with my fear of dying sooner. Because if I cannot mentally and phyiscally endure it, then yes I will die sooner than. There is nothing more I would like to do than to say oh i have a lil nausea, moderate fatigue, no appetite but im managing. Instead of being sick as a dog, vomiting anything I try to eat or drink, and so tired I cant drive, work, or in some cases not being able to even get out of bed. Thats when the thoughts of quality of life over quantity starts. It is what it is and me complaining about it isnt going to change anything. Ive commited to major surgery and chemotherapy treatments and ill do the best i can but if I cant make it through it believe me it wont be because I cant tolerate a moderate bit of nausea, fatigue, hair loss or being very sick a day or two, it will be because my immune system would collapse and the side effects would be so untenable to endure that I would rather die sooner. 

Your the only person I have heard describe treatments as being sick only a day or two. Most everyone I talk to says its pretty much 2 weeks of being sick and weak, two weeks to recover from being sick and weak, then rinse and repeat. And it gets progressively worse because of the immune system. So I dunno, but im going to find out soon enough. Just wish me luck and strength. 

please try not to be scared.

please try not to be scared. whatever happens you will meet some of the most kindest and bravest people that you have have ever met. Some doctors are looking into a link between depression and cancer & who knows, as you get better your depression/mental health issues may as well too.

if there is a link does the cancer cause depression or does the depression cause cancer?

there were a few post re this before this site crashed and it seems alot on here did have bad depression as i did myself. 3 years on no cancer no depression but i am only starting to feel as i am healing now but thats okay, it is what it is. 

Can i please make a suggestion? you say you obsess. make yourself obsess on a cure and follow it through, only focusing on that. research what is helpful & disregard the rest. You know you have to do the chemo etc but make it work more powerfully for your good by anything that is positive towards cure be that prayer, crystals, tumeric, medical MJ, not eating red meat, not smoking, meditation whatever. if your doctors okay it do it and only worry about the other stuff if it happens. if you are not dead at this very moment in time don't waste time you could be using to learn about helping to heal yourself 

i hope this is helpful for you. so easy to go down a black rabbit hole when you hear the word cancer. i was so scared but it was ok but had the attitude whatever i had done to contribute to me gettinng cancer by my unhealthy habits i had to stop. fix what you can & trust your doctors. you have to be brave. You have to be tough.

BTW for me i went into hospital for chemo because i was attached to a drip and had chemo 24/7 for a week twice. two serperate occasions of a whole week of my body being flooded with chemo for 24/7. the only break was when they changed the drip. and guess what. no sickness, no nausea, no baldness. nothing. was out shopping the day after i left hospital.

Take care