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Help With Questions for Doctor pre Chemo Treatment

Posts: 5
Joined: Apr 2019

Seeking your guidance please. My partner was recently diagnosed with Stage IIIB Colorectal Cancer.  He had a total colectomy after a routine colonoscopy showed displasia, and pathology confirmed it was in fact cancer with 6 positive lymph nodes.  He has now been told to begin chemotherapy within 4 weeks of surgery for 6 months with FloFox.  His appointment with the medical oncologist is on Tuesday and it would be great to know what questions we should ask so that we are fully informed. This has been a whirlwind and we feel very uninformed and always wished we had asked more...

What should we ask the doctor about treatment?

Do you have the answers to the follow questions, so we can know what is standard?

- How often will PET CT scans be done?

- Should we have DNA or other sensitivity testing to make sure it will work?

- What other tests can tell us if it has spread?

- Why FloFox and not others, adn what type of FloFox?

Also if you have experience with FloFox, would be great to hear how your symptoms were managed. Thank you!


Butt's picture
Posts: 355
Joined: May 2018

While on chemo the first scan will be in about 3 months. They will do a colon cancer marker to see if a chemo works, but of course it is the scan that has to show it. They have to do a genome test to see the tumor mutations. Most good places do it automatically now. Golf ox is the 2st standard line of treatment. It is a standard protocol. You can search this group and see what people had on golfix. A bunch of posts there. Butt.

SandiaBuddy's picture
Posts: 1176
Joined: Apr 2017

So sorry for the circumstance of you and your partner.  I am a 3b, two years out, so at least I can say there is hope.  There is so much to learn--and tomorrow is so soon.  But I guess take it one step at a time.  I expect you are talking about Folfox, 5FU plus oxiliplatin, with a port?  A number of people on this forum have experience with that, and a seach of the topic will provide endless discussions (you might want to make a quick read through this recent link and  related link).  With an appointment tomorrow, I guess the best you can do is go, ask questions, ask about alternatives (CAPOX, for one) ask about the percentage improvements in survival of each of the alternatives, and to make the best choices you can.  You can always change strategies as you experience and learn more along the line.  Best of luck.

Posts: 19
Joined: Jul 2018

I am also a 3B with 6 nodes affected. I discovered my cancer in July'18 and had surgery in August'18

Since my surgery I had 2 scans: one after 3 months and another after 6 months. I have another scan booked for this July.

I had 12 sessions of Folfox. For me it was not easy, but not impossible to manage also. You will be able to find some good hints on this forum to reduce the Folfox symptoms.

Some Folfox sessions were easy to manage (specially the first 3 ones) and some were very difficult. Now I realize the most difficult ones were the ones I did not had A LOT of water or the ones I did not ate very healthy food.

Beware of the neuropathy. I recommend you always tell your onc how you felt on your last session so he can change the dosage, if needed.

Posts: 5
Joined: Apr 2019

Hi On the Road - thank you very much for sharing.  Good to know you had a 3 month scan. I am pushing for that, though doctors said to wait until the end as it wouldn't change the treatment plan which scares me based on other posts I have read.

Can I ask if you have any tips or tricks that worked for you for managing the treatment side effects? Did you feel up for travelling at any point during the treatment or should we expect to cancel all plans for the next 6 months? Also, do you have a recommended days of the week for doing the treatment? We are trying to schedule now. 

I hope your scans were clear and you are well :) Thanks for your help.


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