Mets to the peritoneum

DiannaG

Hello all:

I'd like to be in contact with someone who is in a similar situation.Here is the situation:

Caregiver for my husband who is 47,diagnosed 03/10 with EC adenocarcinoma GEJ first staged III,radio and chemo combination,then aborted esophagectomy when peritoneal carcinamatosis was spotted during surgery.


The best hope,according to his oncologist,is
Xeloda,4/29/11 we will be reviewing the results of the latest scans,first scans 3/11 showed no rapid progression of disease.

This Xeloda is kicking his butt.No appetite,little energy,neuropathy. I think the difference may be that he was receiving steroids with the infused chemo...

Feedback appreciated.Thanks in advance.


Dianna

Unknown

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mrsbotch

Your husband
Hi Dianna,

When you say Peritoneal mets does your husband have fluid in the peritoneal? My husband dide and that eventually caused his death BUT for your hubby the Xeloda may work for some time. My husband also had fluid in his pleura ara. This is a beast of a disease but if he is getting treatment at a good cancer center then maybe he will do well. I know Vince had trouble eating too, just no appetite at all. I am so sorry you are going thru this.Sherri gives great advice so listen to her and you will hopefully be able to help your husband.


Barb

DiannaG

unknown said:

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Her2
Sherri,thanks so much for your reply.We met with so many specialists at University of Maryland Medical Center,discussing so many different topics.I'm almost certain that the issue of Her2 was mentioned,but I've just added it to my notes for the next consultation,just in case.

One would think a major cancer center would do this specific test automatically! I'm starting to think it's time to request his complete medical file,for a review.

The oncologist said if my husband chose not to treat with the chemotherapy,he'd last about three months.With treatment about 12 months.I'm hoping for many more months,I'm not ready to
bid him farewell in August!

DiannaG

mrsbotch said:

Your husband
Hi Dianna,

When you say Peritoneal mets does your husband have fluid in the peritoneal? My husband dide and that eventually caused his death BUT for your hubby the Xeloda may work for some time. My husband also had fluid in his pleura ara. This is a beast of a disease but if he is getting treatment at a good cancer center then maybe he will do well. I know Vince had trouble eating too, just no appetite at all. I am so sorry you are going thru this.Sherri gives great advice so listen to her and you will hopefully be able to help your husband.


Barb

Pleural Fluid
Hey Barb,thanks for your reply.

As far as I know,there is no collection of fluid,unless something has changed,there are no signs of that.He's lost about 15# in the last three weeks,I'm thinking that's because of the Xeloda,whereas,in the hospital,with the IV of 5fu he received a shot of steroids,which stimulated his appetite.


Dianna

DiannaG

DiannaG said:

Pleural Fluid
Hey Barb,thanks for your reply.

As far as I know,there is no collection of fluid,unless something has changed,there are no signs of that.He's lost about 15# in the last three weeks,I'm thinking that's because of the Xeloda,whereas,in the hospital,with the IV of 5fu he received a shot of steroids,which stimulated his appetite.


Dianna

Waiting is the hardest part.
The time between testing and waiting for the consultation is almost unbearable for me!

DiannaG

DiannaG said:

Waiting is the hardest part.
The time between testing and waiting for the consultation is almost unbearable for me!

No Changes Since Last Scan.

Finally received the results of the latest scan.No signs that the cancer has metastasized to other organs!Although she has ordered ANOTHER MRI of the brain to make sure the mets haven't set up shop there!

The only thing that is troublesome is there is apparent pericardial effusion. So another scan is needed for that as well.

It's kind of annoying to me that after the tests are performed it takes so long to get the results.It seems useless in some cases,such as the pericardial fluid problem,it's most likely been building up since the last scan or before then,which was almost a month ago!

Susie_Brendon

DiannaG said:

No Changes Since Last Scan.

Finally received the results of the latest scan.No signs that the cancer has metastasized to other organs!Although she has ordered ANOTHER MRI of the brain to make sure the mets haven't set up shop there!

The only thing that is troublesome is there is apparent pericardial effusion. So another scan is needed for that as well.

It's kind of annoying to me that after the tests are performed it takes so long to get the results.It seems useless in some cases,such as the pericardial fluid problem,it's most likely been building up since the last scan or before then,which was almost a month ago!

TEST RESULTS
You can get test results in 48 hours if not sooner...just call and call and call until you get them. Don't wait for them to schedule you an appointment. Be persistent!!!! That's what I do anyways...and it always seems to work. This is YOUR family....Be strong and demanding!!!!!!!!!!!!!!!! :-)

DiannaG

Susie_Brendon said:

TEST RESULTS
You can get test results in 48 hours if not sooner...just call and call and call until you get them. Don't wait for them to schedule you an appointment. Be persistent!!!! That's what I do anyways...and it always seems to work. This is YOUR family....Be strong and demanding!!!!!!!!!!!!!!!! :-)

Assertive doesn't work for me.
Susie:

Since we have been having the tests/scans administered in our state WV and treatments and consultations in Md. it's been a problem to have the results in a timely fashion,and there seems to be some rule that only the oncologist can brief us about results.

Perhaps it's time to be more aggressive than assertive? So far,I've prided myself on being pretty easy-going.Because that's my husbands style,he doesn't like to 'make waves' and frowns upon it when I get 'testy' with the medical types.

Our current dilemma is total lack of solid food! He has had nothing but Ensure all day,and a little bit of potato soup broth.He feels hungry,but just can't eat.He thinks he might need another dilation.I don't understand,because he says there's no pain when he swallows...