Page 3 of 5

Re: Cea on the rise

Posted: Fri Feb 21, 2020 3:16 pm
by Mohrfamily
Just got confirmation: FOLFIRI starts next week but the insurance will not approve vectibix. The hits just keep coming.

Re: Cea on the rise

Posted: Fri Feb 21, 2020 3:52 pm
by Claudine
This is nuts! Did they give you a reason for this?
Would they approve Avastin instead? it's not the same thing, but has been shown to do a better job on mets than Folfiri alone.

Re: Cea on the rise

Posted: Fri Feb 21, 2020 6:34 pm
by Mohrfamily
Claudine wrote:This is nuts! Did they give you a reason for this?
Would they approve Avastin instead? it's not the same thing, but has been shown to do a better job on mets than Folfiri alone.

The oncologist is still trying to get it. They're looking at the numbers having risen as not medically sound to continue, but he wasn't ON vectibix when the numbers went up. I wondered about the Avastin myself he goes in for FOLFIRI education Monday and 5FU +FOLFIRI Wednesday.

Re: Cea on the rise

Posted: Fri Feb 21, 2020 9:51 pm
by ginabeewell
Mohrfamily wrote:Just got confirmation: FOLFIRI starts next week but the insurance will not approve vectibix. The hits just keep coming.


Ugh was so sorry to read the update. Vectibix was awful for me but it sure did a number on my mets, so I think you are right to keep pushing for it. I cannot think of why insurance wouldn’t approve unless his genetic type is the type that doesn’t respond to it (which his doctor would know so guessing that's not the case).

Good luck, will be pulling for you.

Re: Cea on the rise

Posted: Sun Feb 23, 2020 8:10 am
by Mohrfamily
ginabeewell wrote:
Mohrfamily wrote:Just got confirmation: FOLFIRI starts next week but the insurance will not approve vectibix. The hits just keep coming.


Ugh was so sorry to read the update. Vectibix was awful for me but it sure did a number on my mets, so I think you are right to keep pushing for it. I cannot think of why insurance wouldn’t approve unless his genetic type is the type that doesn’t respond to it (which his doctor would know so guessing that's not the case).

Good luck, will be pulling for you.


Thanks Gina, I get the impression from the new surgical oncologist that OSU wasn't monitoring DH right, if at all. This is so frustrating. DH has been pretty tight lipped, makes me feel like he might be blaming me or maybe it's my own guilt I can't help but feel. I ask him what he's thinking because there's a lot going on he always says nothing with a half hearted smile.

Re: Cea on the rise

Posted: Mon Feb 24, 2020 10:50 am
by Mohrfamily
So my hubby got more details on the scans, it's showing fluid in his abdomen and that there pump doesn't seem like it's in the right place.

Re: Cea on the rise

Posted: Mon Feb 24, 2020 11:11 am
by radnyc
Darn! Sorry to hear this, sounds like the team at OSU weren't up to speed. Any chance you two can go to MSK to address these issues? I'm sure they'll know what to do fast.

Re: Cea on the rise

Posted: Mon Feb 24, 2020 11:16 am
by Claudine
Mohrfamily wrote:So my hubby got more details on the scans, it's showing fluid in his abdomen and that there pump doesn't seem like it's in the right place.


Which is terrible, but at least better than if the pump had been in the right place but your husband unresponsive to treatment! Hopefully this issue can be corrected soon (another surgery??) and the pump can start doing its job!

Re: Cea on the rise

Posted: Mon Feb 24, 2020 3:12 pm
by Mohrfamily
Fluid in the pelvis and upper abdomen (where he's had bad pain). He's pretty sure he wants the pump out. It's been one problem after another

Re: Cea on the rise

Posted: Mon Feb 24, 2020 3:34 pm
by Jack&KatiesMommy
Yikes....I understand how upset you both must be...it sounds like some mistakes were made. However, you may want to think long and hard before removing the HAI pump. Maybe you could consult with MSK before you make a decision. It sounds like your husband has a high tumor burden in his liver....and the HAI pump may be the very thing that can get rid of the liver tumors (which are the most pressing.)

Cynthia

Re: Cea on the rise

Posted: Mon Feb 24, 2020 7:11 pm
by radnyc
Think hard about removing the pump at this point, remember once it’s out it CAN NOT BE PUT BACK AGAIN, ever.

Re: Cea on the rise

Posted: Mon Feb 24, 2020 8:24 pm
by juliej
Mohrfamily wrote:I get the impression from the new surgical oncologist that OSU wasn't monitoring DH right, if at all. This is so frustrating. DH has been pretty tight lipped, makes me feel like he might be blaming me or maybe it's my own guilt I can't help but feel. I ask him what he's thinking because there's a lot going on he always says nothing with a half hearted smile.

First of all, your DH should not be blaming you. You are supporting him in the best way you know how. And please don't feel guilty! Cancer is hard enough on everyone -- the patient and the caregiver -- without second-guessing the hard decisions that have to be made. All any of us can do is get the best information we can, make the best choice for us, and then see what happens. Don't let guilt eat you up. You are incredibly supportive to him! (((Hugs)))

It certainly sounds like OSU dropped the ball on HAI pump follow-up care. I would contact their "Patient Representative" (or whatever they call it at OSU) and file an official complaint. Then they will investigate it and see what happened. They may be able to come up with a plan to reposition the pump if that's the issue. The definitely owe you an explanation.

I agree with the others about thinking twice before removing the pump. If it was "inexpertly" implanted, or if it moved around for some reason, a surgeon might be able to correct the situation. But there is no correction if the pump is the only thing that will kill his liver tumors and it is removed.

You also need to find out what's causing the ascites (fluid in the abdomen). That could be related or not.

Juliej

Re: Cea on the rise

Posted: Mon Feb 24, 2020 8:57 pm
by boxhill
Sounds like it's time to go straight to MSK and find out what the hell is going on.

Far from an expert here, but I had the impression that the pump with FUDR is supposed to work in tandem with systemic chemo, and for some reason your H was left off of systemic chemo for months, and his HAI pump has apparently not been managed correctly by the locals.

Before acting impetuously, he should go to the experts at MSK and see if he can get back on track.

And this business of blaming you is completely out of line. I don't mean to be mean, but it is time that he take responsibility like a grownup and stop acting out, burying himself in denial, etc. He owes it to you, the rest of your family, and himself.

Am I overstepping? Maybe, but I have Stage IV disease myself, so maybe I get to just say it.

My best to you and your family.

Re: Cea on the rise

Posted: Mon Feb 24, 2020 11:00 pm
by radnyc
boxhill wrote:Sounds like it's time to go straight to MSK and find out what the hell is going on.

Far from an expert here, but I had the impression that the pump with FUDR is supposed to work in tandem with systemic chemo, and for some reason your H was left off of systemic chemo for months, and his HAI pump has apparently not been managed correctly by the locals.

Before acting impetuously, he should go to the experts at MSK and see if he can get back on track.

And this business of blaming you is completely out of line. I don't mean to be mean, but it is time that he take responsibility like a grownup and stop acting out, burying himself in denial, etc. He owes it to you, the rest of your family, and himself.

Am I overstepping? Maybe, but I have Stage IV disease myself, so maybe I get to just say it.

My best to you and your family.


Well said!

Hepatic arterial infusion (HAI) pump complications

Posted: Tue Feb 25, 2020 12:20 am
by JJH
boxhill wrote:Sounds like it's time to go straight to MSK and find out what the hell is going on...

Here is a review article on HAI pump therapy that mentions the different kinds of complications that can occur and what can be done for different kinds of problems. The article mentions MSK as a leader in HAI therapy issues.

Hepatic arterial infusion pump chemotherapy for colorectal liver metastases: an old technology in a new era
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921035/