How often do you get scans and CEA checked?

I'm on a six month shcedule for CTs but at 3 months right now while they see what's going on with the lung spots. I haven't had a colonoscopy since December and don't have one booked. And my cea gets checked every 3 months at this point.

My dx was back in 2006. I never had a PET and will never consent to one. The PET was designed to provide a surgeon with a clearer image of a tumor, but has somehow become the tool of choice of the Oncologists. It’s obviously a great fortune hunting tool that suits the industry well.

After that initial surgery in 2006, a scan at 3 months, then again 3 months later, and once more at three months. After that it was 6 months, then yearly. I have had a scan every year, although they say it’s not necessary.

It normally takes a cancer cell a year or two to grow large enough to be identified. Until it’s large enough to be properly identified, there’s not much anyone can do about that cell. It should be realized, that each dose of radiation adds to the maximum cumulative amount of radiation that we can safely endure during our lifetime. And radiation damages cells; it is considered carcinogenic for that reason. Needless scans and x-rays only add to our problems, so running scared (as we all do when it comes to cancer) too often sends us into the wrong direction.

I doubt any one of us desires to find out that we “could have done something” to prevent the spread of cancer, but doing things that do not and will not matter, doesn’t make sense. And certainly, insisting on doing things that can be contributing factors for the cause of damaged cells, is never a “good thing”. Too much of anything, is never a good thing, although I wouldn’t mind an overstuffed wallet.

Think well, and be well. Keep your eyes on the horizon!

John

I'm still in treatment but I've been getting CT scans every 2 months and CEA checked every 2 weeks. My tires are rotated every 6 months :-)

I was on 6 month schedule, but last time she said yearly was often enough. Five years out and NED

PhillieG said:

I Glow in the Dark!

They do have the newest Scanners at SK but it's a lot of scans and it's actually 11 1/2 years. There may have been a time when I got them every 3 months but for the most part I think it's been every 2 months. Being that I'm not positive may be a sign that it was in fact every 2 months!

Part of my treatment is a blur and I prefer it that way. I have most of the milestones written down and if I looked through notes and blogs I could probably get more specific. I was on Erbitux for ages, at least 6 and maybe even 8 years. In April 2013 I was on it until I had to have radiation to get rid of a lung tumor instead of my usual yearly RFA. The reason being that the tumor was too close to an artery so they didn't want to risk the ablation. However, the radiation which was 3 short doses in a week messed up the upper right part of my lung. It was a gradual lessening of lung capacity which made my breathing harder. The bright side was that I was off Erbitux and CPT11 for about a year . The dark side was I had to use supplemental oxygen at times and did pulmonary rehab but that was "fun" and kind of kickstarted my kayaking a bit. This past summer I bought myself a 1 person kayak and have gone to many new places where as my original kayak was a 2-seater and I only went to the lake at the end of my street. I did that for 81 consecutive days prior to my initial surgery which was 11 years ago this past Sept 20th.

I did have 1 RFA after the radiation and I had to spend a few days in the hospital and I didn't bounce back like I had always done before. I did go back on chemo around April of 2014. I had the choice of the Erbitux and CPT11 OR Xeloda. Having been there and done that, I found out that my Onc had good results with Xeloda so I chose that. I didn't want to make any "rash" decisions! About 8-10 months after that they found a few small spots in my abdominal cavity so we added Avastin again and they appear to have disappeared.

Way back in April 2005, some reported either made a post on here or maybe some other cancer site asking for people who took Avastin. I responded before the Admins took the post down. They don't like people fishing the site for people which I totally understand. Being that I've rarely been one to shy away from discussing my cancer I contacted him and they did this story about the Avastin and whether it's worth the money. They even sent an AP photographer to my house! I was misquoted in the story, I never said I was "cured" but just recently I found the story and made a comment stating that I DO think it's worth the money!!

Anyway, MSKCC has a nice iPhone app that lets me access all of my bloodwork since 2006 so I can see how much (or little) my CEA and CBC has changed over the years. I am sure part of the reason I've done well is NOT because of all of the CT scans but I'm fairly certain that the constant monitoring has given me the chance to take action as soon as something is growing or on the move. It's a fair trade IMO.

Thanks for the congrats!

passed away seven months later.  You, my friend, are a freaking miracle.

PhillieG said:

I Glow in the Dark!

They do have the newest Scanners at SK but it's a lot of scans and it's actually 11 1/2 years. There may have been a time when I got them every 3 months but for the most part I think it's been every 2 months. Being that I'm not positive may be a sign that it was in fact every 2 months!

Part of my treatment is a blur and I prefer it that way. I have most of the milestones written down and if I looked through notes and blogs I could probably get more specific. I was on Erbitux for ages, at least 6 and maybe even 8 years. In April 2013 I was on it until I had to have radiation to get rid of a lung tumor instead of my usual yearly RFA. The reason being that the tumor was too close to an artery so they didn't want to risk the ablation. However, the radiation which was 3 short doses in a week messed up the upper right part of my lung. It was a gradual lessening of lung capacity which made my breathing harder. The bright side was that I was off Erbitux and CPT11 for about a year . The dark side was I had to use supplemental oxygen at times and did pulmonary rehab but that was "fun" and kind of kickstarted my kayaking a bit. This past summer I bought myself a 1 person kayak and have gone to many new places where as my original kayak was a 2-seater and I only went to the lake at the end of my street. I did that for 81 consecutive days prior to my initial surgery which was 11 years ago this past Sept 20th.

I did have 1 RFA after the radiation and I had to spend a few days in the hospital and I didn't bounce back like I had always done before. I did go back on chemo around April of 2014. I had the choice of the Erbitux and CPT11 OR Xeloda. Having been there and done that, I found out that my Onc had good results with Xeloda so I chose that. I didn't want to make any "rash" decisions! About 8-10 months after that they found a few small spots in my abdominal cavity so we added Avastin again and they appear to have disappeared.

Way back in April 2005, some reported either made a post on here or maybe some other cancer site asking for people who took Avastin. I responded before the Admins took the post down. They don't like people fishing the site for people which I totally understand. Being that I've rarely been one to shy away from discussing my cancer I contacted him and they did this story about the Avastin and whether it's worth the money. They even sent an AP photographer to my house! I was misquoted in the story, I never said I was "cured" but just recently I found the story and made a comment stating that I DO think it's worth the money!!

Anyway, MSKCC has a nice iPhone app that lets me access all of my bloodwork since 2006 so I can see how much (or little) my CEA and CBC has changed over the years. I am sure part of the reason I've done well is NOT because of all of the CT scans but I'm fairly certain that the constant monitoring has given me the chance to take action as soon as something is growing or on the move. It's a fair trade IMO.

Thanks for the congrats!

PhillieG,

I am stage IIIc (8 out of 27 nodes positive and PET clean after surgery).  I am on mFolfox 6 currently.  My onc discussed adding Avastin to the mFolfox 6 even though it is not technically indicated.  I am 39 and have two little girls who I want to raise.  He said my insurance would likely not cover it.  Would you pay for it if you were me?

Thanks,

Summer

NEDbound said:

avastin

PhillieG,

I am stage IIIc (8 out of 27 nodes positive and PET clean after surgery).  I am on mFolfox 6 currently.  My onc discussed adding Avastin to the mFolfox 6 even though it is not technically indicated.  I am 39 and have two little girls who I want to raise.  He said my insurance would likely not cover it.  Would you pay for it if you were me?

Thanks,

Summer

I was on Avastin for a year.  From what I recall, it was very expensive (10k-20k per treatment I believe).  The manufacturer has an Avastin Cares assistance program (Genentech or something like that).  Based on your income they cover a yearly dollar amount.  I can dig up the details if you're interested.  i initially took it along with Folfox, which is a standard combined regimen for Stage 4 at least and my insurance did cover it, followed by Avastin alone.  The assistance program helped before I met my deductible and out of pocket max. My liver mets eventually grew back while on Avastin alone. I then stopped taking it to go through SIRT.  It gave me high blood pressure, but not many other side effects.  You'd have to see what your out of pocket would be and look at the study stats on how many months it typically buys you then make a decision that sits well with you.

NEDbound said:

avastin

PhillieG,

I am stage IIIc (8 out of 27 nodes positive and PET clean after surgery).  I am on mFolfox 6 currently.  My onc discussed adding Avastin to the mFolfox 6 even though it is not technically indicated.  I am 39 and have two little girls who I want to raise.  He said my insurance would likely not cover it.  Would you pay for it if you were me?

Thanks,

Summer

Hi Summer, I'm sorry to hear of your situation. It's tough to remember way back to when I was first diagnosed but I think that my insurance fought me over Avastin too at first. I was fortunate to have my brother as my advocate and if I recall correctly, he bugged them and told them it was my only option. They did wind up paying. If it wasn't Avastin then he did it for some other drug but that was new at the time and there was controversy about the price.

I would fight all I could to get it paid for. I would have also paid for it if I had to. I don't know how, but I would have done something. Did you contact the manufacturer? Sometimes they offer help. My first option would be to fight with insurance.

Hope this helps

Here are some links
http://www.avastin.com/patient/support/financial-resources

http://www.needhelppayingbills.com/html/assistance_from_cancercarecopa.html

http://www.futurecareinc.com/news/when-insurers-deny-coverage/

NEDbound said:

avastin

PhillieG,

I am stage IIIc (8 out of 27 nodes positive and PET clean after surgery).  I am on mFolfox 6 currently.  My onc discussed adding Avastin to the mFolfox 6 even though it is not technically indicated.  I am 39 and have two little girls who I want to raise.  He said my insurance would likely not cover it.  Would you pay for it if you were me?

Thanks,

Summer

Summer, if you are truly stage III, Avastin net increased mortality in the two trials for high risk, non metastatic CRC, it went down in flames.  They don't advertise that, officially they just say "no benefit".  Our decision point for antimetastasis and maintenance chemo was an oral 5FU with cimetidine vs oral 5FU with celebrex, or both combined, based on CA19-9 and e-selectin tissue stains and bloodwork,  along with a ton of immune supplements. Essentially we treat and cut a 4b cancer down to a residual stage as if it were a bad stage III, microscopic cell clusters suppressed by all the stuff.  Asian generic versions of UFT seem better than Xeloda for oral 5FU in this role.    

In Mastusmoto (2002), CRC cases with CA19-9 + e-selectin stained tissues were highly fatal even for stage II and III patients treated with only 5FU, without cimetidine, much less stage IV. With cimetidine added, the numerous CA19-9 and e-selectin patients did extraordinarily well. They don't advertise that either.

My wife was positive for the CA19-9 and e-selectin tissue stains, but we first tested her blood for CA19-9 and CEA, analyzed the odds on that.  KRAS reflects in the odds too.  But it is the stains that are most definitive, probably one of the most definitive targets around in CRC.

CEA quarterly (which is silly considering my CEA is not a good indicator but whatever, she's the doc).  Scan once a year in July (doc says the stuff you drink will cause cancer so better to have less scans) and colonscopy every January for five years, then every 3.