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Contradictory results NEED YOUR OPINION! ********* UPDATED with oncologist conclusions. *********

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Got results for CEA, PET, and CT scan:
PET: no lighting any more , ( last time lighting in 2areas)
CEA: 3.2. ( continuously droping from 20)
CT scan:Tumors stable ( so contradicting PET results)
Does it have any sense ? not to me ! Stable or no evidence? can it be necrotized tumors ?.
Did any of you ever had such a similar experience?.
Will appreciate only realistic opinions not only polite ones! hahahaha!
Hugs and thankyou in advance!

****************UPDATE***************************************
Visited onc ! conclusion nobody can say if CT images are still active or dead but since not lighting on PET, also had a complete response in lymph nodes and a normal CEA , he takes the optimistic choice and considers There is not active disease for the moment, so recommended 1 month of holidays and then start just with avastin as maintenance or mop up therapy !.
Trying to decide what to do with wife :
CanCun or Rome, or a week on an SPA in northern Spain!
Hugs! Thanks to the Lord , And love you all , my other family!

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

no opinion dearest pepe except it all sounds GOOD....good good

sorry not to be more helpful....have 3 months of living in the bush brain...

have missed you dear boy

hugs.....mags

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Sounds great! Low CEA, stable as far as CT scan goes...
I often get stable reports. To me it's good news.
-phil

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Theoretically there is no evidence of disease on it , so which one to choose? Can it be not stable but necrotized tumor?

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I have small spots in my lungs.
They are stable.
That means they are not growing.
That means I am happy.

:-)

I'm easy to please!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

have anything inside Specially because I need a rest of chemo!
Haven't speak to my onc yet , but surgeon ( always too optimistic, hahaha, thinks can be just dead tumors since PET is not showing anything any more)

pepebcn's picture
pepebcn
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LOL.

Buzzard's picture
Buzzard
Posts: 3073
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Im like you if PET was clear it may mean that the tumors are necrotic, BUT, if I get in that position, I think I will stay on anyway, until they prove to me that its so. My reasoning, well seems that the nodules in my throat are cancer and yet they never did light up on my last PET, so the cancer was/is there with me, just in minute increments in the throat, but there none the less. My thought for me would be to enjoy my clear PET but yet be wary of getting off or at the least being off to long thinking all is well...even with the tumors, if they are necrotic and 1 cell is still active then, well you get the idea.
Not sure what I will do if in that situation, I hope someday I get in that position to make that decision......Im glad you are doing well sir..........buzz

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Yea I'm in a difficult position since I was thinking to stop chemo and wait and see in case I became clear , now I don't know if I'm clear or not! and be sure my hemorrhoids needs to have a rest of chemo! hahahahahA! take care my friend!.

pepebcn's picture
pepebcn
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between TC and the PET!.
Hugs my friend! Take Care!

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Maybe it's scar tissue so that's why it didn't show on PET but showed on CT.
I can understand how it would be nicer if everything complimented/agreed with each other.
I haven't had a PET scan in ages, I just get CT scans

pepebcn's picture
pepebcn
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Joined: Aug 2010

hemorroids urgently need it , Fu....ing Avastin! Hahahaha!.
Thanks for your opinion my friend!

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Your CEA seems to be a good indicator on your cancer activity. You were up to 20...things were lighting up.... now CEA down to normal level and nothing lighting up.... they can say "whatever" is stable but Pepe.... I think this is wonderful news for you my friend!!!! I am so very happy and excited for you

Jennie

laurettas
Posts: 372
Joined: May 2011

I am new to all of this but I do remember my husband's onc saying something about doing a PET scan to see if any of the spots on the CT scan were just necrotic tumors. So he evidently thought that was a possible explanation for the difference in PET vs CT. Sure hope so, for your sake!

By the way, how was World Youth Day? We loved our experience there 18 years ago!

pepebcn's picture
pepebcn
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2 million young people in the last night and next day mass !

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

It sounds good to me. My report listed a bit of this and that, but came to the conculsion they were possible cysts. Who knows? Report said no evidence of disease so I'm going with that. Still on Avastin for two more rounds, then no more chemo. (Onc had taken me off, then said, no, he didn't mean to do that and put me back on for 3 more rounds, 1 to go after this Friday, Yea!!)So I feel like you, looking forward to a chemo break!!
Winter Marie

smokeyjoe
Posts: 1428
Joined: Feb 2011

Pepe, sounds like good reports. What are your lymph nodes showing now on scans?? Are they still large?? Or have they shrunk down to where nothing is showing now. I don't know how many of your lymph nodes have shown up in the past but are they now not showing up. Take care Leena

pepebcn's picture
pepebcn
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good!.
Hugs!

smokeyjoe
Posts: 1428
Joined: Feb 2011

Amazing that is such good news :) I cannot remember which chemo. you are on, it seems to be working for you.

pepebcn's picture
pepebcn
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hugs Smokey.

relaxoutdoors08
Posts: 520
Joined: May 2011

Thank you for your Prayers for all of us when the Pope visited Spain. Glad to hear good news for you.
NB

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Congrats!

You can have masses that show on a CT, but not know what they are. Then they check with a PET to see if there is metabolic activity (which usually means cancer, but can mean infection, or other disease).

So nothing lighting on the PET means no cancer active enough or large enough to detect! You could still have a mass where the tumor was, but you "killed" it. This is fantastic news. Paired with your normal CEA, my opinion is that if you want/need a chemo break, now is the time to try it. We know the chances of our cancer showing up again after being in distant lymph nodes is really high. It is probably just a matter of time. But ENJOY the time in between as much as you can. It could be a few months, or it could be a few years.

If I had a clear scan and CEA under 3 (for me my CEA gets under 3 when I am NED), I would take a chemo break. I think the best way to get by long term is to get some breaks to get our strength back. And the purpose to keep fighting is so that we do have good times to enjoy with friends and family, when we are not too tired and sick from chemo.

pepebcn's picture
pepebcn
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Hugs!

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

This world is a better place with you in it than without. Sorry I can not offer an opinion on your test results, I am not a doctor, I never played one on TV and I did not stay at a Holiday Inn last night. Ofc since you are not an American, I can not tell if you get any of those humorous references - so just ignore this part and focus on he first line.

Rick

pepebcn's picture
pepebcn
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posting!

Kathleen808's picture
Kathleen808
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Pepe,
I think this is really good news! I know that things can show on the CAT and not on the PET because the things are "dead" not active cancer. Your word is more scientific. Also though I believe the CAT has a better resolution (maybe not a good word) but can pick up smaller things than the PET. I think it is very good news that your CEA is down. It will be interesting to hear what your onc recommends.

Aloha to you,

Kathleen

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

****************UPDATE***************************************
Visited onc ! conclusion nobody can say if CT images are still active or dead but since not lighting on PET, also had a complete response in lymph nodes and a normal CEA , he takes the optimistic choice and considers There is not active disease for the moment, so recommended 1 month of holidays and then start just with avastin as maintenance or mop up therapy !.
Trying to decide what to do with wife :
CanCun or Rome, or a week on an SPA in northern Spain!
Hugs! Thanks Lord for the Rest And love you all my other family!

smokeyjoe
Posts: 1428
Joined: Feb 2011

Absolutely wonderful news for you Pepe!!! Hugs Leena

pepebcn's picture
pepebcn
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my family!

Lovekitties's picture
Lovekitties
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Fantastic news! So very happy for you.

As to 'what to do with wife'...when I first read that I wondered if you were trying to determine something far more interesting...lol.

As for destination...not a good time for CanCun...hurricanes and tropical storms roaming around there. While Rome is lovely, it is a hectic and busy place. Of the ones on your list I would pick the week at the SPA.

I have to recommend one not on your list...Lake Lucerne in Switzerland. It should be lovely there this time of the year.

Where ever you go, be sure to rest, relax and enjoy every minute!

Hugs. Love ya!

Marie

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

I agree with you about Lucerna! is gorgeous!. ( been once)
Concerning Cancun , I know is not such a glamorous place as Lucerna or Rome, but my sister in low is living there for work and tote would like to see her, and I love the water there!.
Hugs!

lesvanb's picture
lesvanb
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Joined: May 2008

que les disfrutan bien tu y la esposa!

Leslie

pepebcn's picture
pepebcn
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Por cierto ,como estas?

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I am so happy you get a chemo break my friend!!!!

You know what my vote goes for. Send me a message on FB if you get dates for the trip. I can't go quite yet, but hopefully very soon. Maybe we can finally share a meal at Villa Rolandi! (And they have a very nice spa too - Thalasso).

rogina2336
Posts: 188
Joined: Apr 2011

Pepe that is so very awwwwwesssssommmme!!!!! It is so great to here scan results like that, I am overjoyed for you!!! Hopes and Prayers as always. Kim

pepebcn's picture
pepebcn
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the SPA!

rogina2336
Posts: 188
Joined: Apr 2011

Oh forgot I would choose the spa in Northern Spain sounds delightful!! Kim

lisa42's picture
lisa42
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Joined: Jul 2008

Sounds good, Pepe! Really good!

Now where to take your wife on a holiday... now that's a good problem to have to figure out! Let us know where you decide to go and have a wonderful time and chemo break!!

Hugs,
Lisa

pepebcn's picture
pepebcn
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Hugs!

johnnybegood's picture
johnnybegood
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pepe.so glad for you.now it is time to enjoy the freedom.anywhere sounds great to me.maybe put your choices in a hat and pull one out.tes the Lord is good....Godbless....johnnybegood

pepebcn's picture
pepebcn
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God bless you!

pluckey's picture
pluckey
Posts: 484
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Gracias a Dios!
Q. Buenas Noticias!

Peggy

pepebcn's picture
pepebcn
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Muchas gracias amiga mía!

z's picture
z
Posts: 1413
Joined: May 2009

This sounds like great news to me. I hope you and your wife have a wonderful time. Lori

pepebcn's picture
pepebcn
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hugs!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Im going for the same results.........Great Job Pepe and yes , it doesn't matter what you do with the wife as long as you are together, its always a holiday...........enjoy it whatever it turns out to be...........love and hug and Postobon, buzz

pepebcn's picture
pepebcn
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hugs!

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

Pepe,
I'm so glad to hear that you're getting your break. ( I had hemorrhoid issues too-ouch!)
Now, since you asked, I'd choose the spa. Maybe, your sister in law can join you and your wife at the spa. Whatever you choose, relax and enjoy. I'm so happy for you.
Karen

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

But agree the Spa is a good plan!

ketziah35
Posts: 1154
Joined: Jun 2010

I am so happy for you Pepe!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

love you!

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