Too much Chemo?? Advice / experiences.

pjlee123
pjlee123 Member Posts: 14
edited February 2023 in Esophageal Cancer #1
Hello and best wishes to all of you on this board.

My father in law with esophageal adenoCa stage 4 is trying to decide how much chemo to continue to take and for how long. I know this is typically a highly personal decision, but I'm sure he needs to have a better sense of what chemo side effects COULD be around the corner.

He's taking some of the standards: 5-FU (fluorouracil) and a cisplatin. He also may or may not be taking an anti-angiogenesis (tries to block the formation of new arteries) experimental drug on his clinical trial.

He takes chemo every two weeks. He's done 5-6 rounds by now. His goal is to do 3 more sessions, get another CT scan as per his clinical trial protocol, and then reassess.

First chemo session, he felt pretty crummy with flu-like symptoms that lasted for 48 hours after the IV came out. Also fatigue and lack of appetite.

Last chemo session, these same symptoms lasted for about 5 days.

He also started to develop cold sensitivity in his hands, feet, and mouth. At first it lasted only a day or two after chemo. Now that also is lasting longer.

Blood work all remains within normal limits.

Oncologist says his side effects are pretty mild compared to many who've had similar amounts of these drugs.

Any thoughts on what he MIGHT expect with 2-5 more rounds of chemo, in terms of side effects? Please drop a line, and thank you.

Comments

  • megmacmd
    megmacmd Member Posts: 85
    Chemo
    I am stage 4 or 3c inoperable andI did 11 rounds of flofox(5FU,cisplatinum and oxiplatinum) the first round I got a concurrent virus and developed bells palsy that cleared up and the next 6 rounds every 2 weeks I was relatively OK except the tingling in my feet and fingers and temperature sensitivity for 5-7 days fatigue no appetite they spaced them out to 3 weeksbut side effects started staying and not resolving the good newswas it did shrink the tumor and nodes a little but at what cost Ive been off 3 months now and still have the peripheral neuropathy of feet and finger tips not as tired but no appetite.I decided to quit since I was feeling worse onchemo than before when I felt OK except epigastric pain from the tumor .I for one have decided I want quaity of life since Im inoperable and this is bound to met at some point I would rather enjoy life off chemo before I get really sick But everyone has to make their own decision I am 56 and my children are 28,26 21 hoping to get the last one through college we will see he is a big boy now a junior at UVA (Uni of Virginia)Good luck making this very difficult decsion.Enjoy the holidays! Meg Mac
  • sangora
    sangora Member Posts: 213
    megmacmd said:

    Chemo
    I am stage 4 or 3c inoperable andI did 11 rounds of flofox(5FU,cisplatinum and oxiplatinum) the first round I got a concurrent virus and developed bells palsy that cleared up and the next 6 rounds every 2 weeks I was relatively OK except the tingling in my feet and fingers and temperature sensitivity for 5-7 days fatigue no appetite they spaced them out to 3 weeksbut side effects started staying and not resolving the good newswas it did shrink the tumor and nodes a little but at what cost Ive been off 3 months now and still have the peripheral neuropathy of feet and finger tips not as tired but no appetite.I decided to quit since I was feeling worse onchemo than before when I felt OK except epigastric pain from the tumor .I for one have decided I want quaity of life since Im inoperable and this is bound to met at some point I would rather enjoy life off chemo before I get really sick But everyone has to make their own decision I am 56 and my children are 28,26 21 hoping to get the last one through college we will see he is a big boy now a junior at UVA (Uni of Virginia)Good luck making this very difficult decsion.Enjoy the holidays! Meg Mac

    I'm a chemo fan
    I have been on chemo for 17 of the 20 months since dx. I am now on my 5th chemo drug. I am a stage IV and am doing very well at this time. I have had 5FU and Cistplatin and Epirubicin all at the same time. 5FU 24/7 for three months with 21 day cycles of the other 2 for 5 months or so. During radiation I statred Xeloda, took it for three months then after radiation took a 10 week break, went back on Xeloda for an additional 7 months and then was switched to the current drug Taxotere. Have been at it since Sept. and have just completed my 4th treatment. I am very lucky in that I experience very few side effects. My body seems to thrive on the drugs. Not sure what that says about me.. but... Anyway, my biggest issue is fatigue which I have learned to live with but do not give in too. I pick some activity I want to do everyday and do it tired or not. The exception is the 5 days after treatment. I ususally feel really crappy so those days I lay around and complain to myself. These days are worth it because I then have about 15 days that I feel good and live my life. I have neausea meds that I rarely need to take, don't have much appetite, but am totally tube feed so it really doesn't matter, I feed by the clock, and though I had the numbness and tingling with Xeloda, have had non of that with the others. My attitude is one of as long as I can live alone, pain free and experience no further spread which I have not, then the drugs are working and I will keep on doing them. When that changes, I will re evaluate and go from there. Yes there are things I used to do that I can't now, but there are plenty of things I can do to give me a good quality of life and I feel blessed. After I finish this note, I am off Christmas shopping with a friend. Yes I will be wipped out when I get home but I will have had a good time and this is my thing for the day. A nap this afternoon will bring me back and I will enjoy the rest of the day watching TV and playing with the dog. Life is good. Sam
  • MomhasStage4EC
    MomhasStage4EC Member Posts: 39
    This is a very hard thing,
    This is a very hard thing, chemo in Stage IV. I begged my mother to stop taking the chemo treatments. But she had hope it would work. You cant take away their hope. I will pray for your father in law.
  • Tmeacham
    Tmeacham Member Posts: 3 *

    I am on round 36. Doc says will continue until it stops working. Does that sound right?