Pseudo Progression: how to diagnose?

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mhf1986
Posts: 148
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Pseudo Progression: how to diagnose?

Postby mhf1986 » Sun Oct 07, 2018 9:15 am

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
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials

hiker
Posts: 59
Joined: Thu Aug 09, 2018 10:15 am

Re: Pseudo Progression: how to diagnose?

Postby hiker » Mon Oct 08, 2018 1:44 pm

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
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-present
Clear of cancer since surgery

mhf1986
Posts: 148
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Pseudo Progression: how to diagnose?

Postby mhf1986 » Mon Oct 08, 2018 5:38 pm

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!)
Caregiver to DH, dx @ 50, mets to liver/lungs/lymphs, MSS, quad wild
9/16 CEA 114, partial blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
4/17 CEA 11
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX caused hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth/ascites; change to Vectibex + 75% Irinotecan dose
7/18 CEA 23, shrinkage
10/18 CEA 28, growth, considering Lonsurf & trials


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