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Re: Cea on the rise

Posted: Fri Feb 14, 2020 4:54 pm
by Mohrfamily
stu wrote:That’s great she is on to it . Now back to treatment and get it all under control .
Wishing him every success ,
Stu


He's prepared for doing anything and everything. This news today really bummed him out though hard to get him out of funks like this when they happen. He wants to blame his HAI pump, but I try to remind him that it may not be the tumors on the liver giving off the markers. So he switched gears to being mad at the hospital that never told us any different.

Re: Cea on the rise

Posted: Sat Feb 15, 2020 5:07 am
by stu
Gosh you can’t blame him for feeling that way . It’s unfair not to have told him . I think that would frustrate the life out of me .
Hopefully it will resolve when he sees his CEA heading in a better direction . But until then you can see where he is at !
You are a fantastic support to him . Always looking out for him . It’s another bump along the way but when you look back you wonder how you endured it , but you do .
Hope he gets some encouraging news soon to give him a boost .
Take care ,
Stu

Re: Cea on the rise

Posted: Sat Feb 15, 2020 8:50 am
by Mohrfamily
stu wrote:Gosh you can’t blame him for feeling that way . It’s unfair not to have told him . I think that would frustrate the life out of me .
Hopefully it will resolve when he sees his CEA heading in a better direction . But until then you can see where he is at !
You are a fantastic support to him . Always looking out for him . It’s another bump along the way but when you look back you wonder how you endured it , but you do .
Hope he gets some encouraging news soon to give him a boost .
Take care ,
Stu


I guess I just feel like it's my fault. I pushed HAI when he was ready for SIRT. I mean I showed him the stats and everyone's opinion here and he went with it. In a way i just feel like this is my fault.

Re: Cea on the rise

Posted: Sat Feb 15, 2020 11:26 am
by radnyc
Try not too be too stressed about this. Seems that no one knows yet exactly what is causing the CEA rise. It’s possible that it’s temporary and not cancer related. I would concentrate on recovery, stress relief and healthy eating. Do the PET scan, take it from there. it’s a bit early to panic in my opinion.

Re: Cea on the rise

Posted: Sat Feb 15, 2020 1:01 pm
by stu
If I was in your shoes I would have suggested the same as I read more positive outcomes with it here than I have with SIRT . I think there was a lot of wisdom in your decision and this is far from over . He obviously has a tumour that produces a lot of the CEA protein . My mum was the opposite it hardly moves at all but her tumours were big and fast growing. He now has a plan to tackle it from two fronts . We are more used to big time lags here in the UK . I sometimes gulp when I see how quickly the US sometimes restarts chemo as my mum would have been flat on her back . The time lag just does not concern me . I agree with the above poster . This could very well be temporary. My mum had a big time delay to restart her chemo after a recurrence and it did a fine job just the same .
The only time her CEA went for a bounce was on chemo . His is more active but does not necessarily put his tumours in a better/ worse position than someone with a low CEA . Your wise and well versed , you have taken heed of the warning it indicates and acted very quickly on it .
He is back on course and hopefully will see it coming back down .
The other strange thing with my mum’s CEA is it sits higher than normal without disease but only moves a little with active disease . I even saw a private car number plate with CEA in it . Just about crashed my car !!
You send him my best and as said above concentrate on getting the right food and exercise. Give him a handle to move forward .
You are a fabulous person doing their very best and that shines through . X

Re: Cea on the rise

Posted: Sun Feb 16, 2020 3:54 pm
by Mohrfamily
Has anyone ever had a negative effect of HAI DH keeps on believing that his liver has regrown and added tumors (before even seeing a new scan)

Re: Cea on the rise

Posted: Tue Feb 18, 2020 7:19 pm
by juliej
Mohrfamily wrote:Has anyone ever had a negative effect of HAI DH keeps on believing that his liver has regrown and added tumors (before even seeing a new scan)

I think it's too easy to make wild speculations before seeing the latest CT/PET scan results. All that stress and worry isn't good for him or for you. Just try to put everything on hold until you get back the scan results.

HAI therapy is usually (at least at MSK) highly monitored, so if they thought it wasn't working, or that there was an issue, they'd check it out immediately. I'm surprised no one ordered a new scan before now. It's not impossible that his new liver grew tumors, but it would mean the FUDR wasn't working at all, and they should have known that before now. The odds are it's from a lack of systemic chemo since he hasn't had it for awhile.

Also, you might comment to his new doctor that your DH is very concerned about the rise in his CEA. That might encourage the oncologist to shuffle their schedule a bit and expedite things to get the results to you sooner.

Hope you get a new plan soon!
Juliej

Re: Cea on the rise

Posted: Wed Feb 19, 2020 8:24 am
by Mohrfamily
Hope you get a new plan soon!
Juliej


The order has been put in for FOLFIRI instead of FOLFOX, he has CT scans today and is supposed to see there new Doc to refill his HAI, so plan in place just nervous.

Re: Cea on the rise

Posted: Wed Feb 19, 2020 6:34 pm
by juliej
Mohrfamily wrote:The order has been put in for FOLFIRI instead of FOLFOX, he has CT scans today and is supposed to see there new Doc to refill his HAI, so plan in place just nervous.

Sounds like you're on the right track. You need more info at this point and the CT scan will provide that.

Will be thinking good thoughts about his scan results!

Juliej

Re: Cea on the rise

Posted: Thu Feb 20, 2020 2:46 pm
by Trying
Praying for you all

Re: Cea on the rise

Posted: Thu Feb 20, 2020 5:11 pm
by Mohrfamily
Not good news.

The CT scans show liver progression.

Re: Cea on the rise

Posted: Thu Feb 20, 2020 6:06 pm
by stu
So sorry to hear that and hope they get it back under control now .
Such an unsettling time for you both .
Take care ,
Stu

Re: Cea on the rise

Posted: Thu Feb 20, 2020 6:30 pm
by juliej
Mohrfamily wrote:Not good news.

The CT scans show liver progression.

I am so sorry to hear that!

Now it's important to figure out why the pump isn't working. Are there areas of his liver that aren't getting the FUDR? That can happen, but rarely. The oncologist can order a "flow scan" of his liver to see if that's what's going on. If so, the surgeon can fix it. Is he not responsive to 5FU/FUDR anymore? Was it because he wasn't taking a systemic with the HAI pump chemo? Lots of possibilities!

Hope you get answers soon!
Juliej

Re: Cea on the rise

Posted: Fri Feb 21, 2020 4:59 am
by Mohrfamily
juliej wrote:
Mohrfamily wrote:Not good news.

The CT scans show liver progression.

I am so sorry to hear that!

Now it's important to figure out why the pump isn't working. Are there areas of his liver that aren't getting the FUDR? That can happen, but rarely. The oncologist can order a "flow scan" of his liver to see if that's what's going on. If so, the surgeon can fix it. Is he not responsive to 5FU/FUDR anymore? Was it because he wasn't taking a systemic with the HAI pump chemo? Lots of possibilities!

Hope you get answers soon!
Juliej


Honestly I don't think OSU was monitoring him like they should have been.

Re: Cea on the rise

Posted: Fri Feb 21, 2020 11:12 am
by Claudine
I'm very sorry to hear about this setback. But it looks like you're on it now, with Folfiri started. Thinking of you XXX