More crappy news from the doctor
My CEA is still going up UGH last draw 2 weeks ago - I wait until each followup cause it makes me feel like I'm not giving it as much power if I wait until next visit - from 15.4 now 18.5. I'm not happy with the continuing climb especially since the draws are only 2 weeks apart. Again today the onc nurse - who I love - told me the same thing as the last 3 times .... It'll probably go down next time.
My platelets are down again so, it will depend on my labs on Monday morning whether or not I get chemo. I was unhappy enough today with my CEA that I thought - screw it ... the chemo isn't working anyway, so why I am putting myself through this?
I have a small mass in my abdomen just below my liver that we've been playing with (palpatating) and it seems to be growing. Onc estimates it at about 1.5 - 2 cms. Says we'll keep our eye on it and if it seems larger next time we may want to ultrasound the abdomen and/or biopsy. I'm concerned because my tumor grew outside of the colon and there is that chance of peritoneal seeding with such a tumor. I have heard that peritoneal mets don't really show on CT scans. Does anone know if that is true or have experience with peritoneal mets?
Last followup and this followup wheneverr the onc presses on my liver I almost throw up. What is up with that? It's rather tender and enlarged but, does anyone else have anything like that with the liver?
And to think if I had gone with my first onc opinion - stage 2 no need for chemo if you don't want it ... I wouldn't have done chemo and would just be out here growing stuff like crazy it seems. Remember people ... get a 2nd opinion!
So, not the best day ... but, I finished up buying Christmas gift cards so I am now prepared for our early Christmas this weekend when my older son comes into to town to celebrate. I'm really looking forward to the weekend and I have my holiday cards all out and my gifts all taken care of! Woo Hoo ... there were a couple of days I didn't think I'd get it done. It's all good.
Comments
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Dang those numbers!
You must not be spending enough time in Walmart...you know the place where they are constantly 'rolling back' the numbers!
Couple of the things you mentioned had me wondering...with your onc on vacation you will go 4 weeks without a follow-up? No one covers for him/her?
If there is a mass which can be felt thru the skin, why wait for more growth? Why not get an untrasound now? Especially with it near the liver and you are having discomfort there as well.
So sorry that the news was not better, but sounds like you have the Christmas thing all in order.
Have a wonderful celebration with your son.
Hugs,
Marie who loves kitties0 -
Lori...
I'm having trouble comprehending this:
-"My CEA is still going up "
-"My platelets are down again "
-"the chemo isn't working anyway, so why I am putting myself through this?"
-"I have a small mass in my abdomen .....and it seems to be growing. "
-"wheneverr the onc presses on my liver I almost throw up...Says we'll keep our eye on it "
And then you said this:
"And to think if I had gone with my first onc opinion - stage 2 no
need for chemo if you don't want it ... I wouldn't have done chemo
and would just be out here growing stuff like crazy it seems. "
It really doesn't sound like you made a great selling point for chemo...
Listen, Stage 2 is tricky stuff. It's tough for any physician to tell what
way it's going to go, because it's not well enough developed. Most
are now backing off prescribing chemo, because they simply can't
tell where the hell it is. And if it's traveled to another organ, a different
concoction of chemo is required. Waiting, is sometimes better than
dunking the patient into toxic chemicals, when it may not be of
any benefit to the patient (see your line #3).
Cancer is a rough battle, but I'm sure you'll do just fine. Don't look
behind, just keep looking ahead, the way you were doing.
John0 -
Lori
Sorry you got the news you did about the CEA, and all the other with the low platelets and mass! Must be frustrating and I wish I could say something to make you feel better. Just know I'm thinking about you and I will be watching to hear about the results of that mass. ......I know you will have a wonderful time with your son this weekend
Oh, by the way, my son and his wife live in Las Vegas. Next time I get to go for a visit, guess who I'm gonna go see.....he he. I didn't mean to change the subject here, sorry. I will be thinking about you!
Gail0 -
thinking of you
Hi Lori,
I'm sorry you didn't have better news. My CEA has also been going up lately- I had it drawn again on Wed right before chemo, but I haven't gotten the results yet- I guess I'll call tomorrow. As of 3 wks ago, mine was up to 192- ugh. It is defintely scary.
So far as the mass in your abdomen, I wouldn't keep waiting on that & I wouldn't keep palpiatating it. I don't know if it really would be an issue, but I'd be afraid of sloughing off cancer cells by pressing or rubbing on it. Not to worry you on that, but that's just what popped into my mind when you mentioned palpatating it.
Don't know about the throwing up sensation when your onc presses on your liver. I've not experienced that.
Sending your cyberhugs and saying prayers on your behalf.
You take care-
Lisa0 -
Sloughinglisa42 said:thinking of you
Hi Lori,
I'm sorry you didn't have better news. My CEA has also been going up lately- I had it drawn again on Wed right before chemo, but I haven't gotten the results yet- I guess I'll call tomorrow. As of 3 wks ago, mine was up to 192- ugh. It is defintely scary.
So far as the mass in your abdomen, I wouldn't keep waiting on that & I wouldn't keep palpiatating it. I don't know if it really would be an issue, but I'd be afraid of sloughing off cancer cells by pressing or rubbing on it. Not to worry you on that, but that's just what popped into my mind when you mentioned palpatating it.
Don't know about the throwing up sensation when your onc presses on your liver. I've not experienced that.
Sending your cyberhugs and saying prayers on your behalf.
You take care-
Lisa
Lori - hang in there, stay positive and as active as you can. We can't change what we have but we sure as heck don't have to lie in misery. You go girl!
Lisa, all my symptoms popped out after I got a lymphatic massage! hmmmm, you got me thinking, maybe it saved my life!0 -
CEA Results
Awwwww Lori, I'm sorry your results weren't what you were hoping for. That is such a bummer when that happens. And the worst part is, when we get results that we don't like to hear, it doesn't necessarily mean there's a major problem. It might mean a change in direction of treatment, or a change of chemos, which IS a pain, but not necessarily a bad thing.
CEA is such an enigma. If it goes down, we all get excited and happy, but when it goes up, we start panicking a bit and wondering "Oh oh, now what is happening?" Then you start hearing different people's numbers... you are getting anxious because yours has gone from 15.4 to 18.5 in 2 weeks... whereas Lisa42's is up way higher and she also is concerned that it is rising. Mine is up around 10 now I think and I know that is very high for me and both my onc and I think the culprit is the tumour in my kidney... which we are working with a kidney surgeon/specialist and it looks like I'll be getting it zapped with an RFA procedure. But first all the boring stuff of more blood work, an ultrasound, etc. and all of this is being done around the end of January when I'll also be getting a port surgically inserted for the new chemo.
I am NOT looking forward to all of that... on the other hand, I'm so busy trying to get Christmas together I've gone back to my usual plan of "One thing at a time and don't expect me to think of more" So, first we get over Christmas and all the ho ho ho'ing. Then New Year's and my birthday. THEN, I can give full attention to doctors, lab, scan appointments.
So, enjoy your early Christmas with your older son and just have fun. There will be plenty of time to deal with the medical stuff when it has to be dealt with. Don't let it interfere with you having a great weekend and celebration
Cheryl0 -
Hi dear i been thnikng of you this thais, feel sorry for the CEACherylHutch said:CEA Results
Awwwww Lori, I'm sorry your results weren't what you were hoping for. That is such a bummer when that happens. And the worst part is, when we get results that we don't like to hear, it doesn't necessarily mean there's a major problem. It might mean a change in direction of treatment, or a change of chemos, which IS a pain, but not necessarily a bad thing.
CEA is such an enigma. If it goes down, we all get excited and happy, but when it goes up, we start panicking a bit and wondering "Oh oh, now what is happening?" Then you start hearing different people's numbers... you are getting anxious because yours has gone from 15.4 to 18.5 in 2 weeks... whereas Lisa42's is up way higher and she also is concerned that it is rising. Mine is up around 10 now I think and I know that is very high for me and both my onc and I think the culprit is the tumour in my kidney... which we are working with a kidney surgeon/specialist and it looks like I'll be getting it zapped with an RFA procedure. But first all the boring stuff of more blood work, an ultrasound, etc. and all of this is being done around the end of January when I'll also be getting a port surgically inserted for the new chemo.
I am NOT looking forward to all of that... on the other hand, I'm so busy trying to get Christmas together I've gone back to my usual plan of "One thing at a time and don't expect me to think of more" So, first we get over Christmas and all the ho ho ho'ing. Then New Year's and my birthday. THEN, I can give full attention to doctors, lab, scan appointments.
So, enjoy your early Christmas with your older son and just have fun. There will be plenty of time to deal with the medical stuff when it has to be dealt with. Don't let it interfere with you having a great weekend and celebration
Cheryl
results are you going to have another opinion?.
Hugs dear!0 -
darling girlpepebcn said:Hi dear i been thnikng of you this thais, feel sorry for the CEA
results are you going to have another opinion?.
Hugs dear!
Oh Dearest Lori.....I am so sorry you did not get better numbers....but that darned old CEA really can pop around during treatment.
I think it is so great your son is coming for early Christmas on the weekend. .....and you have got your cards and shopping done! there you go girl....enjoy this weekend to the max...an ultrasound should be easy enough to get organized a little later.
thinking of you and sending hugs
mags0 -
It's all good
Hey Lori,
Hang in there. Don't say screw it yet. When are your next scans?
CEA may or may not give reliable info about what is going on in your body. Scans tell the tale. My CEA was accurate for a year. It was up at dx and then went down through the 12 rounds of Folfox as the tumors shrank. This Fall my CEA went down again on Folfori, but the scans showed progression and tumor growth. Now my CEA is going up on Folfox. I'm just not going to worry about it. I'm saving all my worry for the scans.
I have some experience with peritoneal mets. It is true that the little bastards don't show up very well on scans. Mine were very small. We weren't sure that they were cancer until the surgeon looked at them with a scope. The mass may be an indication of smaller peritoneal mets, or it may be lone rouge, out for a ride. I guess the only thing you can do is keep an eye on it.
When I first did Folfox, my liver hurt like hell for the first several treatments. Sometimes the chemo will make the liver tumors swell for a while before they start shrinking. So let's just assume that the sore liver is an indication that the chemo is working. Does that work for you?
Take care Lori.
Roger0 -
Concerns
Sorry your numbers went up. When was the last time that you had a CT scan. Would think that the rising numbers would clue your doctor into thinking that maybe further testing should be done, especially if you can feel that mass in your stomach. Doctor should probably get a better look at it. Not sure about the liver, but that doesn't seem right either. Maybe get a second opinion since your doctor is taking off next week. Thinking of you.
Kim0 -
Hey Lori-S
I had my liver surgery February 17th two years ago and I still have alot of tendernous and "funny feelings" going on, I even have what looks like some kind of mass just under the skin but all my tests and scans show just something to do scar tissue...I always worry about anything that seems differnt...we all do...it's understandable....
I wish you well as always and will keeping you in my prayers....
Friend0 -
Thanks everyone
I'm just tired of having higher numbers and something new each time I see the doctor. It just sort of wears on me. And there is still that part of me that just wants to be that stage 2 that didn't have to have chemo. ... Can we say denial??? I think each bit of not so good news chips away at the little bit of denial I still have. After dx and surgery, I went out and starting interviewing for jobs and getting on with things cause I had things to do. Each time that little picture of the things I want to do gets chipped, it kinda bugs me. I'll be alright ... cause I'm always all right.
I really appreciate everyone's support. It's great to have such a support system with so much experience and caring. You give me hope but, keep me grounded too. How wonderful is that?
I love you guys!!!0 -
Hey Girl!!!Sonia32 said:Sending
prayers and hugs your way
Well...I read all the comments...and you got some good ones..... but I'm gonna have to go with whoever said the Walmart comment. I agree! Lets hook up....and go to Wally World...and ROLL BACK THE NUMBERS!!!! You'll be AOK.... your attitude will not allow anything else! Take care my friend.
Jennie0 -
well miss loriidlehunters said:Hey Girl!!!
Well...I read all the comments...and you got some good ones..... but I'm gonna have to go with whoever said the Walmart comment. I agree! Lets hook up....and go to Wally World...and ROLL BACK THE NUMBERS!!!! You'll be AOK.... your attitude will not allow anything else! Take care my friend.
Jennie
ahhhh yes it is a slow chipping away isn't it? chippy chop....there goes your confidence,,,chippy chop there goes your feelings of wellness and good-will etc. I always think of the merry-go-round or the escalator that just keeps going and won't let me off....even if I screammm " stop I want off" cancer just won't listen.
but then I just start all over again...wowsers I sound like a really bad rock and roll song today. I know that the what if game is a waste of time....and I really think just getting on with today is just about all you can do because really there does not seem to be a better choice.
Probably the holidays make all the emotions a little heightened and we think we should be happier than we are....
it's going to work out.....just takes some time...love right back you Lori you!!!
hugs mags0 -
Sorry to hear your latestmaglets said:well miss lori
ahhhh yes it is a slow chipping away isn't it? chippy chop....there goes your confidence,,,chippy chop there goes your feelings of wellness and good-will etc. I always think of the merry-go-round or the escalator that just keeps going and won't let me off....even if I screammm " stop I want off" cancer just won't listen.
but then I just start all over again...wowsers I sound like a really bad rock and roll song today. I know that the what if game is a waste of time....and I really think just getting on with today is just about all you can do because really there does not seem to be a better choice.
Probably the holidays make all the emotions a little heightened and we think we should be happier than we are....
it's going to work out.....just takes some time...love right back you Lori you!!!
hugs mags
Sorry to hear your latest results. But if anyone can turn it around its you.
Prayers sent & enjoy time with your family this holiday season.
I know I cant wait to get on with 2011 as we all have had a bad yr this yr!0 -
This comment has been removed by the ModeratorKenny H. said:Sorry to hear your latest
Sorry to hear your latest results. But if anyone can turn it around its you.
Prayers sent & enjoy time with your family this holiday season.
I know I cant wait to get on with 2011 as we all have had a bad yr this yr!0
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