Opinions needed PLEASE!....CEA rising...scans clear...chemo or not?
Comments
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I'm going in today to seepepebcn said:Jennie ! you are exactly where I was 3 months ago!
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 !
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.0 -
Pepe have you had a recentpepebcn said:Jennie ! you are exactly where I was 3 months ago!
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 !
Pepe have you had a recent scan, how do they look now?? What showed up on your last scan??0 -
Not since I'm in treatment 2 months, next week will be time!smokeyjoe said:Pepe have you had a recent
Pepe have you had a recent scan, how do they look now?? What showed up on your last scan??
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!.0 -
There is not answer for that unfortunately !pepebcn said:Not since I'm in treatment 2 months, next week will be time!
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!.
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!0 -
Jennie I would ask for the Scan before Colonoscopy!pepebcn said:Jennie ! you are exactly where I was 3 months ago!
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 !
It's easier and if got something I bet is not in the colon ,very strange a recurrence in the primary!.0 -
Hi Jennie:
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- Tina0 -
Hey Gail...plh4gail said:Well....
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
I agree that my Onc owes me some answers....and much more explanation.Thanks for your input. You take care.
Jennie0 -
Hey Craig...Sundanceh said:Jen
Well, you know my take:) We've talked it over.
I'll be behind you whichever way you turn.
-Craig
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........... Jennie0 -
alt + Jpn chemo
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.0 -
Hey John.....John23 said:Hey, remember this?
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
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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
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........ Jennie0 -
Hi Jennie,just want to let
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.0 -
Hey Dizz...herdizziness said:Jen
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
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!!!
Jennie0 -
Hey Pepe...pepebcn said:Jennie ! you are exactly where I was 3 months ago!
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 !
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
Jennie0 -
what I'd do
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...
Lisa0 -
Hey Tina...geotina said:Hi Jennie:
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
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!
Jennie0 -
No,no .First cea was rising , when I was on 6 he ordered a Petidlehunters said:Hey Pepe...
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
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 !0 -
Hey tanstaafl...tanstaafl said:alt + Jpn chemo
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.
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
Jennie0 -
Fight for my love.....Fight for my love said:Hi Jennie,just want to let
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.
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
Jennie0 -
Jennie
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,
sara0 -
Hi Jennie
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. **** 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,
Kathleen0
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