The Colon Club

I'm grasping at straws here but as I told DH, I'll do anything!

Background: FOLFOX failed in May with CT showing increase of largest liver tumor from 3 cm to 5 cm. Bilirubin up to 6 with obvious jaundice (blockage of any way out says onc), LFTs are all bad, abdomen filled with fluid, as did lungs. DH was exhausted and slept a lot. Both lungs were drained. 1st round of Vectibex then added 75% Irinitican to the mix and DH is feeling much better by June. July CT scan shows big tumor back down to 3 cm, bilirubin under 1, LFTs good, abdomen fluid decreased. Continue on with I and V.

Last week was the next CT scan and it shows the largest liver tumor is now up to 7 cm. Surprise to all. No lung fluid, same abdomen fluid as July. Bilirubin at 1.4, LFTs good. DH still going to work and walking over 7,000 steps (he used to do 10k) a day. Doctor wants an immediate switch to Lonsurf in 2 weeks and to look at clinical trials.

I can't wrap my head around this. How can 5 cm cause issues in May but up to 7 cm hasn't? I"ve scoured our friend Google with how to diagnose if this is indeed pseudo...MRI? Another imaging system? Another PET? Wait and see...how long? I've seen a few scholarly articles on the topic but my next chore will be getting the onc to listen to us because he's a great one for pooh-poohing stuff. Ideas?

Thanks, Missy

Based on your last statement, it doesn't sound as though you have much faith in your current oncologist. And in this battle, you need someone you can trust and depend on.

If you have not been to a major cancer center (eg. MSK, MDA, etc.), my suggestion is to get there for a second, third or fourth opinion now. Don't stop looking until you hear something encouraging.

hiker

Yes, hiker, you are correct. It is a major cancer center but I don't trust him. At the risk of being "ageist", he's on the verge of retirement, resting on his laurels in previous research in ovarian cancer many years ago, and very conservative in his approach. (I heard from someone else on these boards that she's had the same issue with another dr at the same place.) He told us last year immunotherapy would never work for GI cancers. I don't think we can transfer within the hospital so we'd have to go to another center which I'm willing to do.

At least he admitted he was totally confused too as to why the blood work for the past 3 months was fine and now the CT scan is a mess.

Thanks for sending a note!

Missy
(Not the Dr. Who one but I wish I was!)

So here's the latest thing we were told and if it wasn't sad it would be funny...

Additional genetic testing such as what we are asking for (Foundation One) is not standard of care.

Off to a new doctor next week.

M

Update: Georgetown U meeting on Tuesday, new CT scan on Nov 6. Supposed to start Lonsurf then too but going to wait until after CT scan results. Been emailing with NIH and they said don't start yet if DH wants to try for their trial. Said they like to do the tests and such before starting the next treatment type.

Another update:

Georgetown suggested the following...

It's not pseudo progression nor the end of the world, it's a mixed response which is common with some of these monotherapies
Genomic testing (Foundation or other)
Lonsurf+Avastin (popular in Japan, now getting traction here)
Proton the liver tumor that's growing or biopsy it to see what's going on
Consider PET scan to see what's active
Add back Vectibex later or even try FOLFOX again


We got our current doctor to...

Order the genomic testing
Inquire about Lonsurf+Avastin, not expecting approval
Check with IR about Spheres as they don't have proton
(Trying to figure out if DH can do proton on the growing tumor now and Spheres later)