Postby Monimom » Wed Jun 03, 2020 9:41 am
Hello... I wanted to update as I WAS allowed to my hubs appointment and had the ability to ask a lot of questions …
I am disappointed that she is anti supplements of any kind, ie: milk thistle, turmeric etc... she says nothing more than a multivitamin. Do any of you take supplements ??
I asked her about the newly enlarged spleen & prostate, she said shes not concerned & said prostate is likely age related , & spleen shes not sure, maybe back pressure from liver.. I asked if Chemo could be playing a role in it and she said no.
I asked if the maximum tumor regression could have happened already since hub has had 12 cycles and the shrinkage has been slow & minimal... she said it could shrink more... I asked about the benefit vs harm from these treatments... her reply , "what are our other options??" she then said if we stop chemo the cancer is going to grow , I again brought up my concern about the Avastin "rebound effect" that I have read about... she denies it happens.
I asked about the latest CT scan showing a streaky opacity in the lung, that had never been mentioned in prior scans , she pulled up the scan and couldn't find what the Rad was talking about, and said some notate every single thing they see, and its likely nothing.
Hubs scan mentions calcifications , so I asked if that was good she said that is dead cancer, I asked if its possible the tumor sizes are also showing their size but could be dead cells and she said yes.. only way to know if it is active cancer is a PET scan , and she could try to order one, but regardless of findings her treatment will continue as is
I then asked what is the plan since he's had 12 cycles of Folfox and Avastin… (Oxi was dropped re: neuropathy) .. her plan is to continue a is... 5fU and Avastin until it no longer shrinks or hubs body cant handle... then she's start a diff regimen.
I asked about HAI pump... she said he's not a candidate , he has too many tumors on liver, I know she's NOT the one to decide this,I just wanted to see her reply, she said she can refer us to a hepatic surgeon to allow them to substantiate what shes saying. Soooo...am I wrong in my feelings of disdain ? whats you thoughts?? also his labs again are low... but he's still stable enough for treatments without interventions, I did notice his bilirubin is now high
What are your thoughts ? I am not feeling hopeful with this .. she is very chemo 4 life and thats it... it feels disheartening..
BTW... I want to add one important thing, physically , aside from the weight / muscle loss... my hub is doing fantastic, he is able to do a lot of yardwork , etc... I fear the overburden of chemo on his body will destroy this... hence my concern over effectiveness vs risk,, feel free to chime in I appreciate all of your knowledge & experience,
Moni
Oct 2019 56 yo Husband DX'd
Stage 4 MCC
Colon thickening w/ apple core 3.9 cm area
Liver mets both lobes 10.4 x 7.6 cm & 9.3 x 7.7cm
innumerable small lesions
Oct 2019 Liver Biopsy
CEA Dec '19 . 3,028
Dec 2019-present 5FU, Avastin & Oxaliplatin
Jan '20. CEA 1861.8
Feb '20 CT mets 9.4cm x 6.5 & 8.0 x 6.7 cm
April '20 CEA 411.1
May '20 CT mets 8.6cm x 6.3 & 5.7 x 6.1 cm
Colon unchanged