Mixed Message Today...

valeriec · December 2006

Hi Everyone,
Well, today my mom (stage 4) had her 9th Avastin treatment. She was originally scheduled for 12, but is headed for surgery to remove the tumor on her left adrenal gland. She must be off the Avastin 6 weeks before they will do the surgery. Therefore, that is why she is will not be continuing with the Avastin. Her onc said she wants to "strike while the iron is hot." Meaning that my mom has had a great response to the treatment so far. 5 out of 6 tumors have shown resolution, and the last one (adrenal gland) is dying. Also, toxicity level is very low. Once again, my mom's blood work today was very good.

It all sounded really good until, out of the blue, my mom's onc ordered a CEA blood test today. She has stressed to us before that the CEA is a VERY, VERY, VERY unreliable diagnostic test for my mom because it has always been so low. In May, when my mom was diagnosed (stage 3) it was only a 1.6. In August, when a PET scan showed my mom's cancer had progressed (stage 4), her CEA was 3.9. In October, back down to 1.8. And now today, back up to 2.8. And now she is going off the Avastin (tumor killer) to do the surgery. It's like a catch 22. What do you do??? Does the rising CEA mean the tumor is growing again, or that there is more? Didn't get a chance to talk to onc because the test wasn't done until 6:00 p.m. The nurse just called and said not to worry, that we were going ahead with our original plan...to stop the Avastin and have surgery in 6 weeks. Well, of course my mom is worried now, and so am I.

My mom will be doing another PET scan at the end of January, and then if all looks good, will be headed for surgery the first week in February. This waiting game is scary. And also, this CEA has me terrified. If it is not a reliable test for my mom, why does her onc keep doing it? I have read a lot about CEA on this discussion board and know that it is sometimes not a great tool to use. And, the last scan my mom had two weeks ago did showed that the tumor is dying. I need to focus on that and less on the CEA. I guess I just needed to VENT and SCREAM!!!!

This is me......VENTING AND SCREAMING!!!! I know, it is not a pretty sight! Will try not to do it again. Thanks for listening.

Please keep my mom in your prayers, and God Bless You This Christmas Season-
ValerieC

kerry · December 2006

Hi Valerie,

I know your frustration. I also hear that CEA's are not reliable indicators, they can go up for a variety of reasons. But, I do know that a continuous rise in CEA is an indicator (in me, anyway) that the cancer "may" be growing. My CEA was 0.5 after surgery (Stage III), then began going up gradually to 2.7 when I had my recurrance. That number is still within the normal boundries of the CEA. (0 - 3.0) is normal for non-smokers.

In many cases the chemotherapy drugs themselves can cause an elevated CEA. Rest assured that her doctors seem to be taking good care of her. She seems to be progressing so well. As long as there is a close watch, things won't get out of control.

She's lucky to have you as her advocate. I wish you all the very best and a Merry Christmas.

Kerry

mwomack · December 2006

My husband's CEA has not really been high until this last recurrence with 3 pelvic masses (it got up to 9.3). However, my husband's onc. has taken even little changes as a flag in which he watched it closer. The bottom line is that it takes time to "learn" what an individual's CEA is saying. And it is the trend (steadily rising) that tells the tale for most people.

My husband was diagnosed with Stage IIIc and his CEA was 4.3. After surgery it was 1.7, and there was no CEA taken during FOLFOX. After FOLFOX, his CEA was 2.2; 1.2 (4 weeks later); 2.4 (2 months); then every 6 weeks because it doubled, 2.7; 3.6; 5.5 Pet scan revealed Presacral mass.

Surgery and radiation/Xeloda to remove. Then CEA 3 days after last radiation was 1.6; 1.8 (4 weeks); 2.6 (2 months); then every 4 weeks CEA; 3.8; 5.9 (pet revealed 3 pelvic tumors), and 9.3 before chemo began as he would not start chemo til after Thanksgiving. This time the numbers were rising much more rapidly because they say that any cells that survived the radiation/Xeloda are extremely aggressive.

I also understand that CEA can behave differently when on Chemo which I guess we will find out as they will be monitoring it this time during chemo as there was no surgery to remove the tumors.

Good Luck and concentrate on the surgery as it is the best way to fight this beast.

Mary Ann

betina61 · December 2006

Valerie, I am so sorry to see how you are feeling,but if I was you I will concentrate more in the positive things,your Mon is very lucky that from six tumors she only have one and it looks that is dying too,count your blessings this Chrismas Valerie and remember that the cea count is not allways a good marker. I have the feeling ,don't ask me why that your Mon is going to be one of our sucsess stories on this site.LOTS OF HUGS FOR YOU AND YOUR MOTHER

spongebob · December 2006

Valerie -

Your mom's onc answered your question for you: CEA is VERY VERY VERY unreliable as a diagnostic tool. Many of us here had extremely low CEAs even when we had active disease, others have had higher CEAs and been NED. CEA can be influenced by many things - smog (although I don't think you get too much of that in Aspen, eh?) or other environmental factors, meds - as Kerry noted, or changes (not necessarily for the worse) in tumors. I also know that using a different lab can change the CEA number - a friend of mine is a doc. He drew 2 CEAs from the same patient at the same time. Sent them to different labs, and got back two very different CEA values. I would point out that 2.8 is still well below the "normal" range of 5.0. Please don't allow yourself to get too agitated over a CEA result. CEA is only one test. If it continues to go up, then it's probably time to do some additional tests. When is your mom scheduled to have a CEA drawn again? What is her oncologists's reaction to the CRE value?

I agree with the nurse; don't worry too much about it.

- SB

Monicaemilia · December 2006

Valerie - I think you are worrying unnecessarily. Right before my surgery I had every test under the sun, MRI, C-scan, and yes, CEA test. For some reason my surgeon wanted it. I think it is part of the pre-op. Monica

scouty · December 2006

Valerie sweetie,

I would not worry too much about that level just yet.....mine was 2.1 in Apr, 2.3 in Aug, and then 1.2 last month. I think some foods can impact it, also second hand smoke. They could actually draw her blood again today and get a very different level.

It could also be the adrenal tumor throwing off the markers. Get it removed and then check it.

AND Thank you so much for the Christmas photos/cards. It was great seeing your families faces as well as your Mom and Dad!!!!!! Stay warm and celebrate!!!!!

Happy Holidays to your entire family!!!!

Lisa P.

pjppjp · December 2006

scouty said:
Valerie sweetie,

I would not worry too much about that level just yet.....mine was 2.1 in Apr, 2.3 in Aug, and then 1.2 last month. I think some foods can impact it, also second hand smoke. They could actually draw her blood again today and get a very different level.

It could also be the adrenal tumor throwing off the markers. Get it removed and then check it.

AND Thank you so much for the Christmas photos/cards. It was great seeing your families faces as well as your Mom and Dad!!!!!! Stay warm and celebrate!!!!!

Happy Holidays to your entire family!!!!

Lisa P.

Can you tell me more about adrenal mets affecting CEA levels? My CEA is about 70, just gone up from 41 in past 6weeks.
Best wishes to everyone

spongebob · December 2006

scouty said:
Valerie sweetie,

I would not worry too much about that level just yet.....mine was 2.1 in Apr, 2.3 in Aug, and then 1.2 last month. I think some foods can impact it, also second hand smoke. They could actually draw her blood again today and get a very different level.

It could also be the adrenal tumor throwing off the markers. Get it removed and then check it.

AND Thank you so much for the Christmas photos/cards. It was great seeing your families faces as well as your Mom and Dad!!!!!! Stay warm and celebrate!!!!!

Happy Holidays to your entire family!!!!

Lisa P.

What??? YOU got Christmas cards/photos/candy canes/presents from Valerie and I DIDN'T???

Oh... the hurt... the crushing pain of rejection...

Well, (sniff)... I hope you (sob) have a nice Christmas anyway, (sniff) Valerie... You and Scouty - your new BESTEST friend...

(sigh)

valeriec · December 2006

spongebob said:
What??? YOU got Christmas cards/photos/candy canes/presents from Valerie and I DIDN'T???

Oh... the hurt... the crushing pain of rejection...

Well, (sniff)... I hope you (sob) have a nice Christmas anyway, (sniff) Valerie... You and Scouty - your new BESTEST friend...

(sigh)

Dear (Sigh) SB,
You know you are one of my favorite MaryKay reps/construction workers/sailor men....so many identities!!! And you do them all so well!!
How could I have sent you a card, I didn't have address?? I feel so bad...sniff-sigh. Am I forgiven?
ValerieC

Russell05 · December 2006

Hiya Valerie, All will be well and it's perfectally ok to vent. But rest assured things seem to be moving in the right direction.

My CEA's bounce all over the place and have never been above a 2.7, yet I was a stage 3 been NED for almost 2 yrs and CEA's still bounce up and down. I used to worry but I have gotten over that to a point and learned to just pay good attention to my body. So I understand how you feel. We all should hope we have someone like you to look after us.
I hope this info helps, Take a deep breath and enjoy the Holidays as much as you can. My prayers and thoughts are with you.

Russell

musiclover · December 2006

Russell05 said:
Hiya Valerie, All will be well and it's perfectally ok to vent. But rest assured things seem to be moving in the right direction.

My CEA's bounce all over the place and have never been above a 2.7, yet I was a stage 3 been NED for almost 2 yrs and CEA's still bounce up and down. I used to worry but I have gotten over that to a point and learned to just pay good attention to my body. So I understand how you feel. We all should hope we have someone like you to look after us.
I hope this info helps, Take a deep breath and enjoy the Holidays as much as you can. My prayers and thoughts are with you.

Russell

I only wish Marks CEA was 2.8. Four weeks ago it was 40. Who knows what it is now.

I'm so happy to hear your mom is getting surgery. It sounds like she has a good oncologist. With Mark he was put on chemo indefinitely. Initially tumors were shrinking then it seemed like they had him on too long. Tumors started growing out of control. I don't trust trials - they have the patient on forever with no goal for surgery. The objective is to see how long it takes the cancer to start growing. Not a good plan.

Now that he's exhuasted all chemos for rectal cancer, the only thing left is another trial. Not happy about this. A trial nurse accidentally divulged to me that her patients did not do well on this particular trial. Found a new oncologist that he'll be seeing soon and looking forward to another opinion.

scouty · December 2006

pjppjp said:
Can you tell me more about adrenal mets affecting CEA levels? My CEA is about 70, just gone up from 41 in past 6weeks.
Best wishes to everyone

Any mets can make it go up so don't think about just the adrenal gland (that tumor was specific to Valerie's wonderful Mom).

Have you had any testing lately about the rise? Sorry but I'm not familiar with your particular situation.

Tell us more and we can help you.

Lisa P.

KathiM · December 2006

spongebob said:
What??? YOU got Christmas cards/photos/candy canes/presents from Valerie and I DIDN'T???

Oh... the hurt... the crushing pain of rejection...

Well, (sniff)... I hope you (sob) have a nice Christmas anyway, (sniff) Valerie... You and Scouty - your new BESTEST friend...

(sigh)

Aw, dad....I will send you a picture....but then, I guess I don't count any more....I MAY be in Delaware the way things are going....

Hugs, your loving daughter

pink05 · December 2006

Valerie,

I definitely understand your frustrations. You sound a lot like me. I get very anxious if anything out of the ordinary is happening with my dad. Just remember, you got great news just a couple of weeks ago. I would not read too much into this. Even if CEA is not a good indicator for a tumor, most oncologists test it regardless. This is the case with my father. His CEA was not a good indicator since diagnosis. It was within the normal range when he was first diagnosed. Since then, it has varied. I believe that one time it was 1.5 and then another time it was slightly higher. Anything can cause a change in CEA. Your mom's onc is probably just being thorough. Sounds like she has an excellent doctor. Your mom is doing so well. I agree with Betina. I think your mom will be one of the success stories on this site. Still keeping you and your family in my prayers.

God bless,

-Lee-

valeriec · December 2006

Russell05 said:
Hiya Valerie, All will be well and it's perfectally ok to vent. But rest assured things seem to be moving in the right direction.

My CEA's bounce all over the place and have never been above a 2.7, yet I was a stage 3 been NED for almost 2 yrs and CEA's still bounce up and down. I used to worry but I have gotten over that to a point and learned to just pay good attention to my body. So I understand how you feel. We all should hope we have someone like you to look after us.
I hope this info helps, Take a deep breath and enjoy the Holidays as much as you can. My prayers and thoughts are with you.

Russell

Thanks Russell, it does help. Congrats on your NED statis of 2 years. That is truly awesome. I can't wait until my mom gets there!!
May you and your family have a very Blessed Christmas,
ValerieC

valeriec · December 2006

betina61 said:
Valerie, I am so sorry to see how you are feeling,but if I was you I will concentrate more in the positive things,your Mon is very lucky that from six tumors she only have one and it looks that is dying too,count your blessings this Chrismas Valerie and remember that the cea count is not allways a good marker. I have the feeling ,don't ask me why that your Mon is going to be one of our sucsess stories on this site.LOTS OF HUGS FOR YOU AND YOUR MOTHER

Thank you for the kind and encouraging message. It really made my day!! And, you are right, I will be counting my blessings this Christmas.
Hugs to you from a cold and snowy Colorado gal-
God Bless,
ValerieC

valeriec · December 2006

scouty said:
Valerie sweetie,

I would not worry too much about that level just yet.....mine was 2.1 in Apr, 2.3 in Aug, and then 1.2 last month. I think some foods can impact it, also second hand smoke. They could actually draw her blood again today and get a very different level.

It could also be the adrenal tumor throwing off the markers. Get it removed and then check it.

AND Thank you so much for the Christmas photos/cards. It was great seeing your families faces as well as your Mom and Dad!!!!!! Stay warm and celebrate!!!!!

Happy Holidays to your entire family!!!!

Lisa P.

Thanks Lisa,
I just got a little jumpy there for a minute. Glad to hear you got the cards. Have a blessed Christmas.
ValerieC

valeriec · December 2006

musiclover said:
I only wish Marks CEA was 2.8. Four weeks ago it was 40. Who knows what it is now.

I'm so happy to hear your mom is getting surgery. It sounds like she has a good oncologist. With Mark he was put on chemo indefinitely. Initially tumors were shrinking then it seemed like they had him on too long. Tumors started growing out of control. I don't trust trials - they have the patient on forever with no goal for surgery. The objective is to see how long it takes the cancer to start growing. Not a good plan.

Now that he's exhuasted all chemos for rectal cancer, the only thing left is another trial. Not happy about this. A trial nurse accidentally divulged to me that her patients did not do well on this particular trial. Found a new oncologist that he'll be seeing soon and looking forward to another opinion.

Please know that I am keeping Mark in my prayers. I know how frustrating all of this can be.
God Bless,
ValerieC

valeriec · December 2006

pink05 said:
Valerie,

I definitely understand your frustrations. You sound a lot like me. I get very anxious if anything out of the ordinary is happening with my dad. Just remember, you got great news just a couple of weeks ago. I would not read too much into this. Even if CEA is not a good indicator for a tumor, most oncologists test it regardless. This is the case with my father. His CEA was not a good indicator since diagnosis. It was within the normal range when he was first diagnosed. Since then, it has varied. I believe that one time it was 1.5 and then another time it was slightly higher. Anything can cause a change in CEA. Your mom's onc is probably just being thorough. Sounds like she has an excellent doctor. Your mom is doing so well. I agree with Betina. I think your mom will be one of the success stories on this site. Still keeping you and your family in my prayers.

God bless,

-Lee-

Thanks for keeping my family in your prayers. We are keeping your family close in our prayers. I hope your parents enjoy their vacation!!! Sounds good to me...about 4-5 new inches of snow tonight and are expected to get more. Tell them to soak up some sun for me!
ValerieC

valeriec · December 2006

mwomack said:
My husband's CEA has not really been high until this last recurrence with 3 pelvic masses (it got up to 9.3). However, my husband's onc. has taken even little changes as a flag in which he watched it closer. The bottom line is that it takes time to "learn" what an individual's CEA is saying. And it is the trend (steadily rising) that tells the tale for most people.

My husband was diagnosed with Stage IIIc and his CEA was 4.3. After surgery it was 1.7, and there was no CEA taken during FOLFOX. After FOLFOX, his CEA was 2.2; 1.2 (4 weeks later); 2.4 (2 months); then every 6 weeks because it doubled, 2.7; 3.6; 5.5 Pet scan revealed Presacral mass.

Surgery and radiation/Xeloda to remove. Then CEA 3 days after last radiation was 1.6; 1.8 (4 weeks); 2.6 (2 months); then every 4 weeks CEA; 3.8; 5.9 (pet revealed 3 pelvic tumors), and 9.3 before chemo began as he would not start chemo til after Thanksgiving. This time the numbers were rising much more rapidly because they say that any cells that survived the radiation/Xeloda are extremely aggressive.

I also understand that CEA can behave differently when on Chemo which I guess we will find out as they will be monitoring it this time during chemo as there was no surgery to remove the tumors.

Good Luck and concentrate on the surgery as it is the best way to fight this beast.

Mary Ann

Thanks Mary Ann and Kerry,
You reassured me that CEA is not very reliable and that my mom's is still in normal range.

Mixed Message Today...

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