First time user

PamRav

Hi Barry

just wanted to welcome you here.  Sounds like you've got everything pretty well under control.  I only had 3 treatments with the "oxi" so having experienced too much residual neuropathy. Only a little tingling in my toes now and then. 

wishing you all the best with you treatment. 

 

Pam 

plsletitrain

Hello Barry. Welcome to the

Hello Barry. Welcome to the club.  I was diagnosed stage 3B around the same time as you.  I have 6 more chemo sessions to go.  It has always been a rollercoaster ride and I've learned to accept and live it.  So far I've had it good with the 5FU with Oxy.  But the Oxy with xeloda (oral chemo) weakened me the last time.  I'm more prepared not to give in to the weakness this thursday (I'll have the infusion) so I hope I'll manage it.  Good luck to us!

SophDan2

NHMike said:

Hello Barry,

Hello Barry,

I've heard many comment on sensitivity to cold. Could you describe how that manifests itself? Do you feel chilled all the time or do lower temperatures make you feel funny?

 

thanks,

mike

cold sensitivity

Hi ike,

 

It starts within the first hour of my treatment, for the 4 treatments that I have had. When I touch something cold, such as anything in the refridgerator or freezer, it feels like an electric shock. Over the days following thr treatment days it does lessen in it's severity, but is appears that with each treatment it last longer. It is not a pleasant feeling and a constant reminder that you are on chemo. I also ride a motorcycle; the other night I went for a ride and by the time I got to my destination my hands were in serioud pain from the cool air (64 degrees).

Again, ot a pleasant feeling!

SophDan2

SandiaBuddy said:

Six

To the best of my understanding the treatment protocol is currently shifting from 12 to 6 treatments, so you might want to ask you oncologist about this and do a little research on your own.

you are correct

I did ask about the 3 month treatment, however my cancer is a rare form of colon cancer with MSI High diagnosis. For that reason, they have asked me to shoot for the6 month protocol. If I cannot toloerate the 6 months, I will stop the treatment at any time after the 3 month mark. 

SophDan2

beaumontdave said:

Barry Welcome! Sounds like

Barry Welcome! Sounds like your well informed about a lot of things, so I'll just share my experience with Folfox[including 5fu]. I couldn'd drink anything cold, felt it first at my epiglotis[the punching bag in your throat]. Contacting cold water was like being shocked electrically on my hands or feet. I fatiqued quicker, especially in hot weather. I did all twelve treatments and felt the effects of neuropathy lingering for about a year and a half. I worked all through treatment, even with the pump on my hip running to the port on my chest. I went a little slower and took more breaks, but I got through it. I share my experience as one end of the spectrum of possible reactions to chemo, I know many had a very rough time with it, and some suffer permanent damage, so your cautious approach to how many rounds you do, is smart. The effects on me started after the first treatment and stayed constant until well after the last. The other thing that happened and I really didn't connect the two things at the time, was an increase in the "floaters" in my eyes. That about covers my experience, I hope yours is even better/easier..................................................Dave

Thanks Dave

I have experienced the floaters with my eyes too, but not too much at this point. I will be sitting, and I think I see something move like a bug or a mouse, but I now realize that it was my eyes being effected by the chemo.

SophDan2

plsletitrain said:

Hello Barry. Welcome to the

Hello Barry. Welcome to the club.  I was diagnosed stage 3B around the same time as you.  I have 6 more chemo sessions to go.  It has always been a rollercoaster ride and I've learned to accept and live it.  So far I've had it good with the 5FU with Oxy.  But the Oxy with xeloda (oral chemo) weakened me the last time.  I'm more prepared not to give in to the weakness this thursday (I'll have the infusion) so I hope I'll manage it.  Good luck to us!

Yes, good luck to us all!

Yes, good luck to us all!

MommaAos

My daughter

My daughter has stage 3a colon cancer.  She just finished her 2nd infusion and has lots of hand pain. Im so fearful of the future side effects. How are you doing ? I need encouragement 

SandiaBuddy

Dosage

Momma: You should be sure to let the oncologist know about the side effects.  If the oncologist does not bring it up, ask about reducing the dosage, it might make the side effects more controllable.

SophDan2

MommaAos said:

My daughter

My daughter has stage 3a colon cancer.  She just finished her 2nd infusion and has lots of hand pain. Im so fearful of the future side effects. How are you doing ? I need encouragement 

Just went for the 5th treatment

Hi Momma,

 

The side affects were pretty much the same for the 1st 4 treatments; sensitivity to cold, nausea, tiredness, food not tasting good and so on. Most of the affects lasted the first 7 to 8 days after the treatment date. After yesterday's treatment will will continue until tomorrow via pump, I felt the neuropathy set in right away (sounds like that what your daughter experienced). Today those feelings have lessened, however, the sensitivity to cold still remains, which is really the constant reminder to the chemo. Let your daughter know that the time does move along qicker than you think, and a positive attitude to what she is fighting is so so important.

I am a camper; to use an analogy, it is like while on treatment you are sitting in front of the campfire, but you know that in the woods behind you there is a black bear waiting for te fire to go out. The campfire is that positive attitude, don'tlet the fire go out!