Possibly still NED...our story to date

[ginabeewell]

That’s great news. Dealing with this is tough enough without having to make trips every other week. I sure hope it works out for you!

[boxhill]

To your original question about disconnecting and flushing the 5FU pump, for FOLFOX typically the pump is on for 46 hours, not 48. The total infusion time is indeed 48, but the first two hours are the Oxy and Leucovrin infusion at the center, followed by the 5FU bolus. When I was on FOLFOX they always told me to come back 48 hours after the infusion began. Usually the pump would run out on the way there (it's about 25 minutes away). It is my understanding that it is not wise to wait long before removing the pump, IIRC less than an hour was mentioned.

While some people disconnect and flush on their own, I was close enough to the center that going in made more sense. It also enabled them to take a look at me, give a bag of fluids if necessary, and so on.

The HAI pump is outside my experience.

[mpbser]

I plan on calling the local cancer center on Monday to make an appointment for my husband to discuss the possibility. It sure would be nice to reduce the number of trips to NYC.

My husband's disconnect appointment is scheduled for 48 hours after his treatment appointment (10:30 appointment for treatment at MSK Monday and 10:30 appointment for disconnect at our local cancer center on Wednesday). Hope this works out ok. I will chime back in on my thread next week -- in case this might help anyone else in the future.

[mpbser]

My husband’s 5-fu pump was just about empty at 9:30 am this morning, just in time for his 10:30 disconnect appointment at our little cancer center in town. So far, he has had practically no side effects from the folfiri. He takes 1 gram of ginger daily which I started giving him a few days before his Iri infusion on Monday. The Life Extension protocol says to use it for the three days before treatment but, if I recall correctly, is silent about during and afterwards. Since 5-fu with LV stays in the body for 2-3 days after the infusion has finished, he’ll keep doing the ginger tomorrow and Friday. Basically, the only side effect he has had is fatigue and that only came upon him tonight. So far, so good.

Also, his labs on Monday were phenomenal.

[zephyr]

My husband’s 5-fu pump was just about empty at 9:30 am this morning, just in time for his 10:30 disconnect appointment at our little cancer center in town. So far, he has had practically no side effects from the folfiri. He takes 1 gram of ginger daily which I started giving him a few days before his Iri infusion on Monday. The Life Extension protocol says to use it for the three days before treatment but, if I recall correctly, is silent about during and afterwards. Since 5-fu with LV stays in the body for 2-3 days after the infusion has finished, he’ll keep doing the ginger tomorrow and Friday. Basically, the only side effect he has had is fatigue and that only came upon him tonight. So far, so good.

Also, his labs on Monday were phenomenal.

That is AWESOME! My experience with Folfiri was tough but I was in pretty bad shape when I started. I'm so happy your husband's experience has been so good. It's encouraging since I may be doing Folfiri again soon. You can be sure I will remember ginger. Are you giving him fresh ginger or a tincture?

[mpbser]

500 mg Capsules. Yarrow brand, supplied by vitacost

[boxhill]

Good news!

[mpbser]

and the good news continues.... the fatigue is gone. Essentially, he has experienced minimal side effects this round. The ginger has worked wonders. Thank goodness for http://lifeextension.com/

[ginabeewell]

Is your husband just on FOLFIRI or does he have Vectibix or Avastin as part of his mix?

Dr K just prescribed 5FUDR and Vectibix for me - no Oxy and no Iri this round of systemic. I had asked her to consider keeping me on FOLFOX so I am just curious what drove the recommendation. Maybe my local onc can give me some insight during our appointment on Monday!

[mpbser]

He is only on folfiri. That's really interesting change per Dr. K. I would be very interested in knowing her reasoning.

[ginabeewell]

He is only on folfiri. That's really interesting change per Dr. K. I would be very interested in knowing her reasoning.

My best guess is that it is tied to the fact that I had a pretty serious infection back in December.

At the time, my local oncologist was worried that FOLFOX + Vectibix might have just been too much for me. When I returned to chemo after healing from that infection, I did my first round sans Vectibix (which Dr K thought made no sense, by the way). So maybe Dr K is pulling the Oxy out this time instead? I've seen a few people mention that the new protocol for FOLFOX is six rounds, due to the long-term impact of the Oxy. I've done 8, albeit with a 7 week chemo break in between cycle 5 and 6.

Personally the Vectibix side effects bother me a lot more than the Oxy does. That one round I had just FOLFOX was a breeze. But it seems like the doctors are convinced it's really working and so don't want to take it out of the mix. Can't wait for my rash to return in full force, ugh.

I'm sure I'll find out more on Monday.

[mpbser]

I found myself going down the rabbit hole again... one thing I read brought me to another, then to another and another, and so on....

So, I was reading about how sTNF-R1 (a type of tumor necrosis factor) was found elevated in the greatest percentage of all CRC patients and immunity, etc., in https://www.int-imm-foundation.com/en/p ... s.htm#fn19 and I got curious about what the difference is between innate immunity and "cellular" immunity which I found out was aka "cell-mediated" immunity... which led me to this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3938011/ Immune response after laparoscopic colectomy for cancer: a review

and the following caught my attention: "In particular, the level of circulating tumor cells is highest following manipulation of the tumor" (a concept I have seen expressed on this forum a number of times).

I am now convinced that it was a BAD idea for my husband not to have done mop-up chemo after his liver surgery in January 2018. Oh well, nothing can be done about it. Moving on.....

[Punky44]

I wonder about that concept too but then I also think how virtually all Stage 1s are never advised chemo but their tumors are “disturbed” upon removal just like everyone else’s.

I dwell on this a lot especially bc the doctors had my mom do all her chemo upfront before surgery.

[henry123]

Thanks for asking, punky. He's still a bit shocked, as am I. The PET results seemed to be so promising. What a let down.

This disease is such.
Take things in your stride.
Best wishes.

[mpbser]

Really trying very hard to take things in stride.

My husband's boss is acting up.

Says that he wants my husband to be at work every day he isn't doing chemo. Well, he HAS been! Seriously. WTF?!?! I don't even have the words to describe how much I despise that man.