Postby Monimom » Tue Aug 11, 2020 6:30 am
Thanks everyone for replying...
I figured she was not accurate, whether shes knowledgeable on the matter or not I don't know, I have gotten the impression from here since day 1 that she has ZERO plans on my DH having any chance at a resection, whenevr asked she would say I can get a liver surgeon to explain , (this seemed like more of a call her bluff statement to me) I have really begun to have a dislike for this practice, they claim to follow MSK (they have an alliance with them) we are about 2 hours away from NYC.. after I mentioned the pump and the direct vs systemic delivery , she then uttered both his lobes have tumors and she mumbled that she will give a referral if we want, I told her that we are looking at our options a bit down the road, as he is just getting ready to begin Xeloda, ( he just went back to work to try to keep our health insurance) He is really doing wonderfully, he feels good, aside from the neuropathy in his toes and fingertips. some areas have discolored on his toes, we told her but she doesn't seem concerned... is this normal from Oxaliplatin??
In regards to this Pharm / Dr. blame game...
my gut says it was the Dr. office.....
They wasted a week when they first tried to order through "their" specialty when our coverage clearly indicates where to get specialty drugs.
then sent the script missing important info last minute...
as a side note... when we first met with this Onc, and she told us the treatment plan, I asked specifically if there was an oral chemo he could use instead of the infusion, she said yes but its not as effective and side effects are hard....fast forward 16 infusions later and low and behold we ask for the oral so he can work, she obliges , so I again ask is it as effective as the infusion, her reply.... yes !!
As I stated , we started out with this Dr. not hand selected as my husbands diagnosis l (ike many's) was completely off guard in an urgent care for a back ache, so this was the center we were shuffled to, and in the shock of everything we have been going along with it ... for now I am trying to learn as much as I can about what our options might be, while trying to hold on to the insurance we have before he needs to be on SSDI...
Thank you one and all for your replies, they truly help
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