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Opinions needed PLEASE!....CEA rising...scans clear...chemo or not?

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

I recently posted that I am getting my CEA tested weekly because it is rising...every test a little more. from 5.0 to 10.5 as of last Monday. However, my PET/CT shows nothing..all clear. I have 2 different teams of docs..with 2 different opinions...and I don't know who to listen to. Here are THEIR opinions but i REALLY want to hear all of yours.

Onc since DX: Last week he said to do another CEA this past Monday... if above 10...that pretty much rules anything else out except recurrance. Then he went on vacation and left me hanging. Didn't know if I should continue with my maintenance chemo last Tues since Onc wasn't around to advise so I declined..didn't see the point if it ain't working. They made me another appointment for maintenance chemo tomorrow..again, whats the point??? Do you all see a point in having it??? This will be 3 weeks in a row with no chemo of any kind and avastin was stopped 2 months ago. Onc said...before he left..if it rises above 10 then we will need to start chemo again...and a new chemo....

Radiology Oncologist from St. Louis Univ Cyberknife- He did my last 2 PET/CT's.... checked the last scan 3 times...just to make sure he didn't miss anything.... Not even nothing there that would make him raise an eyebrow. He says that even though CEA numbers are rising...you can't treat a number! He can't treat what he can't see. I have not had another colonoscopy since DX...which has been just over 2 years ago... so he ordered me one for Thursday and if that is clear he wants to do a CT. He is suggesting a "wait and see" approach.

I have an issue with "wait and see"..... I'm scared to WAIT too long and have things all of the sudden pop up and be out of control. I also have an issue with doing chemo when there is nothing there to treat. I mean.... lets say a tumor pops up somewhere and can be treated with RFA or even surgery instead of chemo...do I go that route? OR... do I change to a different maintenance chemo and try that for a while????...I DON'T KNOW!!! And I don't understand why my Onc would want to start a "new" chemo when I have had such success with Folfiri.... I didn't stop taking it because it stopped working... I stopped because it worked SO WELL and got me NED.

I have read that it is bad for a stage IV person to just stop everything....and do no chemo at all..not even maintenance...because it can come back with a vengence(sp?) Well, ain't that what its doing now and I HAVE BEEN on maintenance chemo!! I have also read maintenance chemo is not even considered by some docs.

So..tomorrow..I can go ahead with my old maintenance chemo.... that may..or may not be working..how do I know if I don't know why CEA is rising..FOR SURE. OR..do I skip it and wait for results of Cololoscopy/CT on Thursday/Friday and figure it out from there...what if those are clear??? I also read where they will open your tummy and look around for what they can't see on scans.... for some reason that don't seem right. Does it?

Anyway, my mind is on overflow trying to decide what to do so I thought maybe ya'll could put your 2 cents in and maybe that would help me sort things out. I appreciate any input you can give me. take care

Jennie

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

LOL.... I read back my post and you are right.... I am answering my own questions!!! I think I know what I think I just wanna make sure you all think what I think....LOL... and right now I think I am thinking tooooooo much!!!!

hugs.... Jennie

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

I totally understand your squirming Jennie. That is a pretty significant climb in a short timeframe. I hear you about your "maintenance chemo" not working. I say skip it and get that scope and CT ASAP. Ain't no way a radiologist is going to do a surgeon's job of opening you up! You can take that to the bank. Here's to a cancerour polyp they can remove during your scope!

Keep us posted. And remember girlfriend we got some celebrating to do in Chicago this October!

Lisa P.

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

Thanks for your 2 cents!!! and you can bet your sweet bippy we will be celebrating in Chi town!!!! Hugs!!!

Jennie

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Oh Jennie, I am so sorry, .I can't advise you, but i can share this with you. Every single time i have had surgery they found more cancer that did not show up on pt/ct. Even when the colon was operated on. I would be very cautious about stopping chemo. It may be keeping it at bay at least until the dr. does the tests.
Listen to your gut!!!
Hugs to you my friend.Judy

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

I just don't know what to think about the chemo..... I need guidence and I just can't believe my Onc left no one to take his patients while he is gone!!!! I am listening to my gut for sure...since that and you guys is all I got!!! Thanks girlfriend!

Hugs... Jennie

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Sorry to hear that the cea continues to rise. I agree with you that there doesn't seem to be much point in staying on the maintenance chemo. It's irritating that you are supposed to put this decision off until her gets back from vacation.

I like the way your St. Louis doc is thinking. And I really like the way you are thinking this through. Get more info. "Wait and See" is not doing nothing in this case. It's taking time to do the tests/procedures and gather more info. Sometimes you just have to guess about what's going on in your body, but hopefully these tests will give an accurate picture.

If the colonoscopy and CT come back clear, I'd say that's a good thing. It doesn't give you an answer about you cea rise, but that is better than discovering some new damn big tumor. I suppose the surgeon could make a little cut and drive a camera all around your insides looking for trouble. My surgeon did this prior to my resection last year. No trouble at all. Out patient.

Good luck tomorrow. I'll be thinking about you.

Roger

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

I've been really wondering about that "exploratory" stuff. Glad to hear its a simple procedure like that cause I may be needing it.... Thanks Rog!!!!

Hugs.... Jennie

Annabelle41415's picture
Annabelle41415
Posts: 6153
Joined: Feb 2009

Sorry you are going through all of this. It seems to me that you should wait for your colonoscopy to find out what is going out there since you have ruled out other things. Seems you should have had this done before now but maybe your doctor has different ideas on why he waited. Praying that all goes well for you and that the rise is nothing significant. Chemo is so hard to decide on what to do. If you feel comfortable doing it and not feeling ill effects then do it if you wish. You have been through so much and know you will get through this as well.

Kim

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

You know what..... you posted a reply to my very first post here on CSN...and here you are STILL with me....... Thank you Kim... I appreciate you! I agree about the colonoscopy. I didn't realize I should have one until people here posted their frequency. I did ask my Onc an he said "with ll the other stuff you got going on THAT is just not important and last on te list" funny thing is I was NED when he said that...what other stuff???? HUH! Might be time to be checking into a 3rd opinion and a new Onc.....we'll see...... Take care Kim

Jennie

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

oh jennie,

its not the best news, is it. Your ONC is on holidays, well when you see them next stress hte point you hope she had a wonderful relaxing time and that you have been going through your own hell trying to work out what to do with out there input.

its your life, your health, I think they should provide some excellent quality backup when away on holidays. they have let you down, don't let them off the hook, they better give you the best advice and service possible from here on in.

if might sound trite, but meditate and be cool and keep your beautiful smile smiling,

you have to believe you will beat this.

I beleive being relaxed and positive and NOT stressed is my top priority.
Now I let my wife win all the arguments, only occasionally here am I stubborn for what I believe in.

You cannot fight this curse if your bodies fihgt or flight mechanisms are kicked in.
Now the worry about the rising CEA must have been for awhile.

Worry and fear are our cancers friends.

Peace and love are cancers enemies. smile at your cancer, it does not have a chance, and the only power it has over your mind is what you let it.

Their are lots of options around, have a vege juice, enjoy some tofu for lunch, visit a naturopath. Now your pesky cancer maybe raising the stakes, I say fight back peacefully.

Lets use the Ghandi model peaceful non cooperation. Its less aggressive then fight back.

Only you know the best way for you.

My current beliefs have been re-inforced since reading a mans search for reason and then the biology of beleif by bruc lipton.

hugs,

Pete ( smiling )

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

Thanks for your 2 cents too.... I am taking in all this advice and comments to help me decide where to go next. I do see a ND.... take some supplements.... and juice daily. My best to you and yours! Take care

Jennie

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I don't know the answers, but I sure hate this uncertainty for you.

*hugs*
Gail

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

You're such a sweet person......thanks for your concern. take care

Jennie

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

*smiles* at Jennie. Takes one to know one! You're welcome!

*hugs*
Gail

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

Jennie, I am still pretty new to all this so I don't have too much of an idea what to say. What I do think about....your CEA rising - so why? It seems I heard there is another reason for the CEA to rise and I bet you or someone here knows why......I don't know about opening you up to look around for what they don't see. What if it's somewhere they can't see it? (but I'm sure it's not!!!!).....I think when onc gets back you deserve some better answers. And the results of the colonoscopy and ct. I don't blame you for the wanting answers. Take lot's of care!!

Love and hugs, Gail

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

I agree that my Onc owes me some answers....and much more explanation.Thanks for your input. You take care.

Jennie

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, you know my take:) We've talked it over.

I'll be behind you whichever way you turn.

-Craig

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

Yes, I enjoyed our phone conversation. I was pretty upset when we spoke and by the time I hung up you had me laughing..... the BEST medicine!!!! Thanks Craig...and I know you always have my back...likewise!!!

Love ya........... Jennie

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I posted this way back in September 16, 2010 - 10:55pm

----------------------------------------

To: Jennie -

Whew.

Re:
"my peeps on the Cancer Board say that their docs tell them that
dying tumors...dying cancer cells..can cause a rise in CEA.
He told me that is absolutely NOT true. He siad when cancer cells
are dying they have less or no CEA in them at all... They are DEAD.
can't measure the antigen in something dead. "

Oh? Ok.:

"Chemotherapy and radiation therapy can cause a temporary rise in
CEA due to the death of tumor cells and release of CEA into the
blood stream. Benign disease does not usually cause an increase
above 10 ng/ml."
From: http://www.medicinenet.com/carcinoembryonic_antigen/article.htm

---------------

"The data presented in this study support both lines of
thought concerning CEA production; however, these results
strongly uphold the theory of CEA release by dying cells."
From: http://etd.lib.ttu.edu/

-------------

"recent observations of CEA upregulation in CRC cell lines by cellular stressors such as
hypoxia9 or exposure to cytotoxic drugs such as 5-fluorouracil.10,11 Moreover, it is plausible
that apoptotic release of CEA from dying cells could trigger transient increases"
From: http://cigjournals.metapress.com/index/8278xq0v077w2166.pdf

-------------

"One possible explanation for the rise in marker levels among
patients with regressing tumor is that the dying cells may
release large amounts of marker into the blood."
From: http://www.faqs.org/abstracts/Health/Tumor-marker

------------

"Colorectal cancer patients whose CEA blood tests rise at the
beginning of chemotherapy and then fall (CEA flare) do better
than patients with a consistently rising CEA. CEA flares don’t
necessarily predict worsening cancer.

Compared to patients with consistently rising carcinoembryonic
antigen (CEA), patients who had a CEA flare had more tumor
shrinkage, longer time before their cancer got worse, and longer
survival time."
From: http://fightcolorectalcancer.org/research_news/2009/

------------

"If we had followed this ASCO guideline of measurement of CEA
level every second month, one of the surge patients would have
been incorrectly interpreted as having experienced treatment
failure, and therapy would have stopped.
The patient would have
been incorrectly removed from the treatment, giving her a time to
progression of 11.2 months and 27.3-month survival. To avoid
inappropriate therapy changes based on clinical misinterpretation
of a CEA surge as an impending disease progression, we suggest
that future ASCO guidelines should mention the possibility of CEA
surge. Furthermore, we suggest that no therapy changes should be
based on CEA levels alone at all during the first 6 months of therapy.

An initial rise in CEA level during effective chemotherapy in
colorectal cancer patients may not always indicate progression of
disease but may be a transient CEA surge in patients responding
to chemotherapy.
In monitoring tumor responses and in future
guidelines for the use of tumor markers, the possibility of a
surge phenomenon should be taken into account. This will
especially be important if a new, more effective treatment with
high response rates or rapid tumor destruction is introduced. "
From: http://jco.ascopubs.org/content/21/23/4466.full

-------------

Those last paragraphs (note bolded text) say more than enough regarding
CEA and mistakes that can be made with treatment scheduling.

And Re:

"He told me that is absolutely NOT true. He siad when cancer cells
are dying they have less or no CEA in them at all... They are DEAD.
can't measure the antigen in something dead. "

Maybe you oughta' shop around for a new Onco..... You deserve
better care than an idle assumption.

(I wanted to re-phrase that last statement....... My extreme anger at
physicians that are too busy making money to do research, was showing).

John

---------------------------------

There. How was that?

It's like Deja'Vu all over again.

We always manage to worry about everything after a diagnosis
of cancer; I don't think it ever stops. (not for me, anyway)

Think good things!

John

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

no not a doctor, but a pretty happy dude.
its great info i missed before
thanks, pete

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

I want you to know how much I love and appreciate your extensive and well thought out responses to my posts.... and all posts. You bring a real quality to this board. Don't ever leave!

To address you post.... Dying cancer cells do cause a rise in CEA but not a continual rise and not one exceeding 10.0.

CEA has always been a good indicator for me. In the past....every time I have had a "flare up" in my CEA... of 2 or more...scans have always revealed recurrance. At DX my CEA was 75. After surgery...2 months later.... it was below 10 and then went to normal range. It started to rise last year and mets to lung were found. Had Cyberknife and at that time the highest it got was 9.5 and then slowly went down as that (and pneumonia) healed and got back to normal.

This is what is freaking me out.... CEA is highest ever...since DX..and nothing on scans??? well..WHY??? All explanations not related to cancer have been ruled out...even dying cancer cells because CEA too high now for that. Can you show me 1...just one example...where nothing was found when CEA rose above 10???? I can't find any article anywhere to say..ya, that CAN happen.

As ar asy Onc goes...... jury still out on that.... but things gotta change or he is outta there!

Lookin forward to your response John........ Jennie

BettyJoM's picture
BettyJoM
Posts: 86
Joined: May 2011

I finished chemotherapy about 6 weeks ago. My Cea level in sept, after my surgery was 3, recently, about 3 weeks ago my level was something like 7.8. I have no idea what was in between. My oncologist did a pet scan which showed nothing but he wants me to have a colonoscopy, scheduled for next week.
I havent gone to any of the links you provided but after finishing treatment and the CEA rises, it is an indication to look for cancer, am I right?

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

Hey girlfriend, this took a lot of thinking before I could post, and heck I'm still thinking about it. I think definitely the colonoscopy, my surgery onc, said one year no longer then that for a colonoscopy after surgery, so this December I'll be getting my second one, so I highly recommend you definitely get that!! My ct scan is showing clear but my cea went up from 2.4, to 2.8, to 3.0 in the past 9 weeks, so I'm worrying, but my onc isn't (probably because I'm sick, dang this whatever I have crapola).
I'm not sure about the chemo thing, I think I'd wait until the colonoscopy and the ct scans before deciding more vigorous chemo.
Love at cha,
Winter Marie

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

Thanks for giving me so much thought.... I definately agree that it is past time for a colonoscopy. What was the highest your CEA ever was? My CEA has doubled in less than 5 weeks so I know how you are feeling with the rise...BUT...if you are sick that can definately be whats behind yours...and..you are still in normal range. I declined chemo again today. Until I know for sure what is going on I cannot decide on a treatment. Hopefully all tests will show whats up this week..sure hope so cause I am suppose o leave Mothes Day morning for the Dominican Republic for a "stress free" vacation....need answers to make that possibe!!!!

Take care Dizz..HUGS!!!

Jennie

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

Remember? My pet was lighting nothing , but Cea increasing , then doctor order a ct scan which for certain things is more accurate and show some spots of just few milimiters that Pet cut not pick it up!.Then he put me on the same chemo again as it was stopped not for not working but just because after 5 rounds there was nothing in there!.
So it does not mean necessarily you got a reoccurrence ,and I pray for that but I would suggest to have a CT scan! .
Then if not images you will be sure about you are clear!.
Hugs !

smokeyjoe
Posts: 1428
Joined: Feb 2011

I'm going in today to see onc. had scan on Thursday, this is first C.T. halfway through folfiri treatments. I don't think my CEA is a good indicator, it's 1.4, and hovers around there. What if the scans show all clear. After the six months do I continue with chemo?? Dr. said something about a six month break. Of course I'm praying it's gone after doing chemo. and pray it doesn't come back, but I know the odds. I just hope I'm one of those fortunate individuals who can put this all behind me. Sundanceh just wondering "what your take on it" is, sorry I'm relatively new to this. You've been through so much. You all have been. I'm amazed by your strength.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hey there...

My take for Jennie was to do a full CT scan - do the scope if she wanted to do that - go enjoy herself for her mother's day get away - and then when you come back from that...

Do another round of bloodwork to see if CEA has risen or staying stable. Review the CT results to see if there is any kind of mass.

And if there were no mass, I would not be voluntarily taking chemo to chase down a random ghost in my body - not yet.

At that point, a "wait and see" approach of 6-8 weeks and then they could scan again and use that as a baseline comparison.

Pumping the heavy chemo drugs into our system with the hopes that we'll get something that may or not be there is a dangerous thing. This stuff is just not good for us. And you risk desensitation to the chemo when you may need the heavier stuff down the road.

Jennie, I know you hate to "watch and wait" - you like to take action, but sometimes it is indeed the best plan. Remember, "ony fools rush in where Angels fear to tread." LOL:)

Take care Smoke - and Jennie, you know I love ya'

-Craig

smokeyjoe
Posts: 1428
Joined: Feb 2011

Thanks for the reply Sundanceh....well, got an all stable from the onc. All lymph nodes in normal range, one spot on my spleen that they are watching is unchanged. Said 3 more months of chemo and if stable still time for a 6 month break, and just scans....keeping my fingers crossed!!! Jennie I hope for the best for you, you've been through so much and have had amazing results on Folfiri so far. I asked my onc. about supplements, he said not to take Folic Acid as it would counteract the chemo. Just wondering if you've gotten the same advice.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Pepe have you had a recent scan, how do they look now?? What showed up on your last scan??

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

Only cea controls dropping !I'm scanned every two months more or less ! Also I was having pets every two months but not any more unless scan shows a surprise, hope not!.

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

Talking with my onc. he has seen everything, people has been Ned forever after 6 round of chemo and not maintenance, people that after been Ned continue with maintenance and in 3 months back to reoccurrence , and the other day he explain me about a lady who is his patient that was given what they call a compassionate chemo, knowing it was not going to work , I think she got CC and the chemo was not even for colon ! It was 10 years ago ! and she is NED since then ! The tumors where in liver and huge!.So you see!

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

It's easier and if got something I bet is not in the colon ,very strange a recurrence in the primary!.

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

So let me get this right... you are saying that your Doc started you back on chemo..your old chemo.... based on CEA rise ONLY because your scans were clear????? That right? How high did your CEA get? Thanks Pepe ..good to know

Jennie

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

and a Ct scan, Pet showed nothing but scan showed some tiny spots and some inflammation in a lymph node!.Then yes we started with the same chemo as it worked very well before and no cancer grows while on it ,just decided to stop it as they consider I was Ned!.
Hugs !

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Get the CT scans but make sure they do complete scans, head, chest, abdomen, pelvis, bones, the whole thing. Sometimes they just do certain areas. When you get the results of a complete scan it will tell you if something is indeed going on. Why jump into big guns chemo unless you know specifically which area is giving you trouble? Like you said, it could be something that you can treat without chemo and zap it away if there is anything there.

George has not had a colonoscopy since diagnosis. When I questioned it, as I remember the explanation, he would have to be off of treatment for a period of time, month to six weeks, due to the Avastin and complications if bleeding should occur and doc felt stopping treatment could do more harm than not having the colonoscopy. Now George is a Stage IV. Stopping treatment for Stage II or III might call for a different protocol because of the organ involvement with Stage IV. Should for whatever reason a colonoscopy becomes necessary, George's colorectal surgeon will be doing the colonoscopy procedure to insure that maximum care is taken.

Take a deep breath, its gonna be ok, either way it goes, we are here for ya girl.

Hugs s- Tina

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

Great suggestion on CT scan because he did mention that they were just going to scan midsection. My Onc has never even talked about another colonoscopy. I had to ask him about it and he never said anything about avasin and bleeding issues..just "if ya want one I can order one" He was the same way with my Vit D levels. I had to ask him to test me for that..after hearing here how important it is.... at that time my level was 5...WAY LOW!!!! almost none!!. Its finally got to 20 after taking supplements but that is still way too low. I just started taking liquid Vit D3 as that is absorbed by the body at a much better and faster rate.

thanks for always being there for me Tina... Hugs to you and George!

Jennie

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Our decision was to maximize alternative(1600 cimetidine, PSK, vit D3, vit K2, coQ10, lipoic acid, etc, etc) with continuous oral chemo (UFT-LV, approximate Japan protocol) to control new metastases, where we are counting on a 2nd surgery with known nodes.

We will use chemo up to the morning of surgery, cimetidine replacing newer proton pump inhibitors through the surgery. And back on the anti-angiogenic chemo with mild side effects, ASAP.

We had a second radiologist to read the CT to find the nodes.

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

You are always so on top of your plan. Kudos to you!!! Can you please keep us up to date on the progress? Take care

Jennie

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi Jennie,just want to let you know I have been thinking of you and you are in my prayers as always.Best luck with everything.

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

You are such a great person!!! It means so much to me that I am in your thoughts and I so appreciate your prayers.Thanks for being such a good friend! Take care

Jennie

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Jennie,

That's so wonderful that your PET shows NOTHING! But, still concerning that your CEA continues rising. What I would do (not giving medical advice, just saying what I think I'd do if I were the one in your shoes) is that I don't think I'd go on the maintenance chemo this time, but I'd hit the naturopathic treatments HARD- immune boosting and anything/everything they recommend.

As you know, I'm doing both together at this time & if my cancer ever gets to the point where I'm hoping and praying it will (nothing showing on the scan, or at least showing shrinkage and die-off), I would stop the chemo and just rely on the naturopathic dr's advice. After so much chemo, I just want my body to be rid of the poison.

Just saying...

Lisa

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

I did turn down my chemo again today. Over the past few days I have sat back and gave my life some serious thought. What is different..if anything. You know what has changed A LOT???? My diet and my supplements. When I got that food poisoning 6 weeks or so ago .... it all changed then. My juicing went down to 1 cup every other day now.... stopped all supplements except Vit D and probiotic. The diet is the biggy.... I started drinking Pepsi again..lots of it...as a matter of fact... I cannot seem to get enough sugar. I have never been a huge sugar freak...other than Pepsi... but this past month has been..BAD..REAL BAD. I think I realized it when my R.N. daughter was in charge of the free kidney testing the other day. They also checked for diabetes. My sugar count was very high... like pre-diabetes high. My kidneys tested normal and they did some other test with my sugar than rendered me normal but in a caution zone. They made me go thru the "kidney mobile" which had demos on how much sugar is in what..OMG! I was seriously shocked. When the man asked who drank soda my daughter offered my info of "at least 5 cans a day"...thanks daughter!.... and the mans mouth dropped open when I told him I only drank that much to wash down the ice cream bars!! Yeah... I been real bad. I have been on a weight loss mission for the past year. Lost 82 pounds...NOT THIS PAST MONTH...in 6 or so weeks.. I have gained 17 lbs!!!! Yep....gotta be all that sugar....and fat from all the excess eating I been doing too.

However, this does not cause CEA to rise...maybe if there was cancer growth..but none seen...so that puts me back to square one. Lisa, I had no idea your CEA had started out WAY LOW..normal....and has rose to the level it is now. I know you are relating to my situation and I am ever so grateful that you offer your opinion and encouragement. It means so much!

I guess I will have more news by the end of the week so until then I guess I have to grin and bear it. You take care my friend.

Jennie

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Jennie,

You really need to read that long article Hatsheput posted about sugar being toxic (Other Lisa, you too). It will completely explain why your testing showed you to almost be diabetic. FYI, people with type 2 diabetes increase their risk of colorectal cancer 20-50% all because of sugar and their bodies response to too much of it especially in liquid form, like your Pepsi.

The president of Sloan Kettering's Cancer Center also chimes in how sugar ultimately feeds the blood supply of mets. This is all very recent research results and pretty eye opening.

The lastest studies now show that sugar absolutely not only contributes to us getting cancer but it helps it grow and spread! Scary stuff but girlfriend you need to know and I don't think you are one of those head in the sand types.

Please read the article or at least read my thread on liver damage to better understand what sugar does to our bodies. To read the part about mets, look at my response to Betsydoglover on that same thread.

As always, let me know if I can help you in any way!

Lisa P.

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

I read your post and I will read Hatsheput's now. Thanks again for all you do!!!

Jennie

sasjourney
Posts: 395
Joined: Jul 2010

Hi Jennie,

I would not start chemo until I knew exactly what we were treating. I completely agree with your radiology onc. That is just my opinion, but you must follow your gut and do what you think is right. I am sending prayers and hugs your way. You'll make the right choice.

Hugs,
sara

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

Good to hear from you!!!! Yes... I am holding back on chemo untl I know more. That is what my gut is telling me so that is what I gotta do. Thanks for prayers and hugs back to ya girl!
Take care.

Jennie

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Jennie,
I'd say you are doing a great job of figuring out your next step. I'm sorry that you're having to tackle this right now but it sounds like you're getting a plan in place. Dick finally had another colonoscopy 2 years, after the first one that found the cancer. All was well in his colon. It was good to know.
I agree with Tina, do make sure they scan all of you.

Thinking of you and hoping that darn CEA starts a downward trend.

Aloha,
Kathleen

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

Great to hear Dicks colonoscopy came out good. Thats encouraging news. The last 2 PET/CT's I have had they scanned head to toe. I have never had that done previosly. It was always chin toid thigh. It felt good to see what was going on in my brain. I always wonder about that area...of course I have wondered about that area my whole life..LOL!!! You take care! Tell Dick I said "Hey"

Jennie

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Our radiologist said ears to thigh has higher CT resolution for 99.9+% of where CRC mets show up.

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