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latest CEA results- not good

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

Hi,

Got my lab results back this morning from Friday's blood draw. It's been three weeks since my last CEA check. It went up 132 points in three weeks. It now sits at 727.6 That's a pretty scary number & I've felt myself getting worse and weaker the past couple of weeks. I guess this probably means the natural extract I've been taking since Dec. 2 isn't working (nor is anything I've been doing, I guess).

Also, two of the three measured liver enzymes are slightly elevated. The nurse today told me it was slight, so not a huge concern. My concern is that last time just one was slightly elevated. The time before that- none. I have been getting stabbing pains in the area of my lower liver lately too. The ultrasound I recently had done on my abdomen showed nothing out of the ordinary except "multiple liver metastasis". I have a big lump that sticks out from there- I think it must be my liver swollen with tumors sticking out there, since "no abdominal mass seen" was written on my ultrasound report & all the organs showed as normal.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

{{{HUGS}}}

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

HUGS as well, praying for you!

toyfox's picture
toyfox
Posts: 158
Joined: Apr 2011

More Hugs
Linda

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Many hugs and as always in my prayers.

You never walk alone,
Marjan

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

Maybe not doing nothing, just not stomping the cancer flat. A lot of what my wife takes is supportive, greatly ameliorating chemo or cancer symptoms to keep the body functioning as well as possible, where we can measure it in blood tests, visually like in 5FU-folate toxicity to eliminate early stomatitis over a year ago, or overcoming fatigue.

Although the mild immunochemo we use appears not to kill all the masses above micromets (2-4 mm) outright, where some things dissolve but not all, we still use it to slow them down. Between your onc, perhaps another "more biochemical" naturopath, maybe John23's type formula, we hope that you can wring another CEA slowdown or reversal out. You seem to have always made some progress by going forward.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

The huge disappointment and fears come through your written words...God Bless you Lisa. May something turn around for you--stat.

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

I'm with the rest of the group....

(((Lisa)))

I'm just speechless...my heart is heavy.

-c

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

one for ya i hope you can feel the love((((HUGS))))...Godbless...johnnybegood

tko683
Posts: 265
Joined: Aug 2011

I am thinking of you and sending more prayers your way....Hugs, Teri

Jaylo969
Posts: 827
Joined: Jan 2010

You are in my thoughts and prayers.I admire your strength, courage, and dignity so much!
Sending hugs your way and as our friend Roger used to say "sending up sparks for you."

-Pat

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Oh, dear Lisa, I so wish that I could give you a comforting hug in person... Please know that you are in my thoughts and prayers.

All my best,
Cynthia

Annabelle41415's picture
Annabelle41415
Posts: 6440
Joined: Feb 2009

What has your doctor said about the shooting pains and it sticking out? Has the possibility of a hernia been ruled out as they can be very painful too. I'm so sorry that your test is higher. You have done so much to find help from all angles. Your strength is admired greatly.

Hugs! Kim

lauragb
Posts: 370
Joined: Aug 2011

Sorry for your disappointing news. I know you have been working so hard.
Know that I am sending light and prayers your way.

Laura

smokeyjoe
Posts: 1428
Joined: Feb 2011

Oh, Lisa, was soo hoping that this formula would work for you. Hugs....

cowman
Posts: 61
Joined: Jun 2009

Saying big prayers for you, Lisa. I know you believe in the One who will carry you through this. Hope you can feel everyone's care and concern and respect for you.

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

My heart is so heavy thinking of all you are going thru right now. I'm so sorry your news is not better. I know you plate is so very full right now so please know that you are cherished, loved, admired and cared for by so many members of his board.

Love to you my friend - Tina

baldwin
Posts: 25
Joined: Dec 2008

Dear Lisa,

I have followed you as well as many, many members on this board for a couple of years. I do not post very often, but I follow most every day. You are one of the members that my husband, who is a stage 4 colon cancer survivor with mets to his lungs, liver, brain, spine and bones, that I follow closely. You remind me of our fight, never give up! We have also engaged a naturopath, been to an alternative cancer clinic, modified the diet, taken non "FDA approved drugs", and are still fighting the fight of our lives. You have been and will continue to be an inspiration to me. I, too, fear the day when the oncologist says, there is nothing more that we can do. I do not know if this applies, but our oncologist at Mass General Hospital said to us several months ago that if my husband's treatment stopped working, that he may be eligible for a trial that was running for stage 4 colon cancer patients that have exhausted all of the "chemotherapy treatments" based on a particular gene, no, not the KRAS one for Erbutix. The non-approved FDA drug that my husband also takes is Anvirzel. MD Anderson did a Phase I trial on this and Sloan Kettering has information on their website regarding this, although, they say it is non conclusive. Of course it is, the pharmaceutical companies cannot make enough money off of it to fund the remaining clinical trials to get it approved. In any case, my prayers are with you and and I am your cheerleader in the background. You are going to find a way to overcome this obstacle. I feel it in my heart.

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

((hugs))

I hope you get some relief!

Leslie

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

I called my oncologist's office to see if I could get in to see him asap, but was told by his nurse that he was going to be out of the office the rest of the week so she would have him call me sometime towards the end of the day. He called me 5:00 and we spoke for about twenty minutes. We discussed the possibility of again trying Folfox- pros and cons, etc. He said that he honestly does not think it's a good idea- that if I could even get through the first treatment with desensitization (I've been allergic to it and desensitization worked in the past when I was on it in 2007 until my 10th treatment where, even with the desensitization and 6 hour infusion, I had another reaction and was then told "no more"), he would not think it a good idea. He said that we likely would have to stop treatment due to side effects, my difficulty with breathing/oxygen levels lately, or I could end up in the hospital with an allergic reaction or in the hospital with another infection, pneumonia again, or something like that. Instead of giving me more time, it could actually give me less. He said we could do just Xeloda or just 5FU, but I told him that since I've had pretty bad side effects with those in the past (esp. Xeloda), I didn't want to deal with chemo side effects unless I was taking a chemo that at least had a chance of packing the cancer a whallup. I asked about regorafenib and any other drug that may on the FDA fasttrack. He said that they are not yet available unless through clinical trials & he doesn't know of any on this coast. Again, however, he thought they could do me more harm than good. He did also say, however, that he doesn't want to jump to any major conclusion based on this one CEA number. He knows CEA has always been accurate for me, but still did say that sometimes it can be affected by infection and other things.

I have to decide if I'm going to continue on the natural extract I've been on since Dec.2nd or not. I run out of what I have on hand on Jan 28th, so I'd have to pay for and put my reorder in by this coming Monday in order to get it on time. I don't know if it really isn't working at all, or if it is just taking longer. $2500 is a lot of money to spend if it's not working at all. I've written an email to the doctor in the UK where I'm getting it from, haven't gotten his reply yet as it was 1:30 here when I wrote it and they are 8 hours in time ahead, so it was way after hours for him at that time.

My naturopathic dr. is in New Zealand until early March and there are two other doctors there I could consult with, but I don't know that I will bother. I've been on so many different types of supplements from there over the last year. Other than help me have some energy (with could be worth a lot), I don't think any of it has really helped my cancer at all. Heck, I strayed from the vegan diet today- went to Subway and got myself a nice turkey sub. Might as well enjoy tasty food if changing my diet hasn't helped me. Not that I'm going to totally abandon it, but maybe indulge myself with things I enjoy to eat a bit more often.

I may still do some research and look into some clinical trials. Even if I don't find anything that I could do, I'd feel more satisfied knowing I tried and- who knows- I just may find something else.

Thanks for your support, everyone!
Lisa

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

Lisa -

Aside from my continual rant for TCM and the benefits of
Chinese Herbal broths.........

It may interest you to read at the Syracuse Cancer Research Center
and look into hydrazine sulfate.

I have two bottles of pills (enough for the full treatment) that
I purchased from a supplier in California for $60 ($30 ea).

The Center does not sell anything, but can provide names of
places that carry the substance. It's used in Canada and other
countries, so it's not "snake oil".

Spending thousands of dollars for substances that carry no
"proof" of it's ability to help, isn't the best of ideas.

TCM has nearly four thousand years of experience in usage,
and hydrazine sulfate has been around since the 1950s.

I personally prefer TCM, but as a last resort, the hydrazine sulfate
is in my cabinet.

Look into it; it can't hurt your wallet.

Best of hopes for you,

John

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

Oops- double post

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

Oops again- triple post- don't know how that happened!

baldwin
Posts: 25
Joined: Dec 2008

Have you ever contacted the Block Cancer Center in Chicago. They administer chemotherapy with a chronomolulated pump. They also have had success with trying Folfox again. If you do call, I strongly suggest you have a consult with Dr. Keith Block. Their feeling is that it kills more cancel cells based on your circadium rythum and my husband was having treatments out there and had good results. They also give you a vitamin infusion to build up your immune system and the after effects of the chemotherapy were not so severe that it prevent you from having chemo the next cycle and because they administer the chemo with the chonomoluated pump, it is not so toxic to your system that is doesn't make you so sick. I can attest to this. My husband had pneumonia in November, lost so much weight, is now on TPN, that we cannot travel from Boston to Chicago for his treatments. I will tell you, when he now has treatment in Boston, the same regimen as in Chicago, he now has diarrhea and is very nauseous, he has never had these symptoms before. It may be because this terrible disease is progressing, his lost of weight, I do not know, I am only reporting the facts. I only want to suggest, if you want to, there may be an other avenue.
We don't know what may work for anyone of us, it is in God's hands.

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

If you haven't taken a peek at the Umass cancer center, you really
ought to. It's a fine institution, and had served my mother well.

Link: UMass Medical

They're noted to have the newest and finest of western medicine's
technology.

Their charges for services are negligable, compared to the commercial
institutions.

Good luck, and better health.

John

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

Lisa,
I am sending you my love and prayers. You are on my heart.

Aloha,
Kathleen

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

Lisa, i am so saddened by this news. like everyone else, i admire your strength and am praying for you.
hugs, judy

Annabelle41415's picture
Annabelle41415
Posts: 6440
Joined: Feb 2009

My thoughts and prayers are with you.

Hugs! Kim

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

sorry to hear about the progress, its not over until the fat lady sings, i cannot hear hear any singing.

germany is cold this time of year, i might still be on a plane this week.

have you tried ukrain ? thats what i start next week.

i hope you enjoyed the turkey, i had an icecream the other day. ssoooooo good.

love and hugs,

hugs,
pete

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

More hugs and love sent to you dear friend!

Love ya, Gail

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

Lisa, apparently these folks wriggled away from you on my previous question, "secret shopper". Can you tell us quantity wise, like X small pills, Y large pills, Z tsp/TSB per day their formula contained?

For $2500, something so expensive - at this point I assume they're hiding if they didn't better describe the contents, and with European sources, I fear are going to be on the low content side too. Their slim blurb, "Trepenes (sic, terpenes), Organosulfides, Aromatic Isothiocyanates, Indoles, Dithiolethiones, Phenols, Flavonoids, Tannins, Ellagic Acid, Gluccarates, Nerolidol" might roughly correspond to only some of the ingredients in LEF's recommendations, much less the quantity.

Excluding the Avemar (we use coQ10 and K2/MK4), I would expect to buy the LEF protocol for well under $300/month, mostly at Swansons. We use a lot more vitamin B6, B12(methylcobalamin), C, D3, K2 (menaquinone-4 instead of Avemar),coQ10, MSM, grapeseed for maybe another $100/mo. Less if I have time to shop.

We use daily UFT as the 5FU back bone, avoiding synthetic (common) folate was key to use (avoiding ordinary multivitamins with folate, fortified wheat bread). Since UFT is not available in the US, low dose Xeloda is the only oral available.

Are you still doing cimetidine?

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

Hi,

I stopped the cimetidine because I realized it was interfering with my digestion. While I was taking it for hopefully its benefits of fighting further metastasis, it is of course, an antacid and it reduces stomach acid. I've always had a digestion problem, so don't know I didn't put two and two together. I do now wonder if it was helping prevent the spread and if my stopping it had a negative effect on the cancer. Since stopping it, however, I don't notice undigested food in my bowel movements anymore, which used to happen every time. It was with some foods like no more digestion even took place after I swallowed- weird. I don't know if I should start it up again or not.

Regarding what you have your wife on, do you know if it's been helping her yet or not?
I've also been taking B6, B12, D3 (10,000 IU/day), K2, MSM, coQ10, resveratrol (which I think is the same as red grapeseed extract), a mushroom extract, cesium (a fairly low dose, to keep my cells alkaline, I eat no meat, I eat more vegetables lately(organic), take garlic oil capsules, was taking liquid "highly absorbable" CoQ10 from Costco- stopped only because I ran out and haven't been able to get into any stores due to germy people- I also take turmeric, acai, and chlorella. I know there's a few other things in there that I take on a more semi regular basis. I've been taking all this in addition to the extract from the UK & my CEA went way up even with all of those put together. What is the Avemar- is it a combo of coQ10 and the K2/MK4 (what is MK4?)?

No, to be honest, I never really did find out what "exactly" is in the extract I'm taking. I do believe several of the testimonies and that it really has helped some people, don't know why I always seem to be the one things don't work on! I'll decide in the next few days whether or not to continue on it. My current supply is good through Jan. 28.

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

whats msm ?

if you added quercetin and with egcg and some pancreatin. we wouild be getting close on some of the supplements.

spoke to the most experienced colorectal surgeon in sydney a few hours ago, he said what we all know here about chemo being paliative. i digress, his key was also to keep cimetidine going, that it in fact i should keep it going.

i am on avemar, its ok, was pushed onto it by integrative gp 2 ian rafter.
its got some merit and scheduling issues.

http://petertrayhurn.blogspot.com/2011/12/avemar-and-enduracell-and-apatone.html

hugs,
Pete

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

Lisa, I consider the cimetidine as a major factor in her original success wiping one set of mets before 1st surgery, and for stopping the spread of mets, even carrying the para aortic nodes for an extra year. Since cimetidine in essence directs some of the white blood cells to attack cancer cells, it is dependent on WBC levels.

My wife has used 1-2 betaine hydrochloride+pepsin tablets (stomach acid) with meals, and a 1400 mg equivalent pancreatin for digestion before/after meals. MK4 is the active menaquinone-4 version of vitamin K2 and worked with 5FU (UFT) and vitamin C in our lab tests. Avemar is a somewhat similar molecule, a quinone, to coQ10 and vitamin K that may help kill cancer cells. I am sure we're much higher on the vitamin loads, I would not surprised if LEF type recommendations were quite higher/stronger than your UK formula.

It is not easy to get consistent recommendations on the supplements. I feel the naturopaths tend to aim low on quantity vs maximum/therapeutic amounts. That's why I've been reading science and medical literature directly, preferably original data. A world of difference.
Again, for what we have achieved on tumor kill with LEF supplements, it's still not enough to immunologically kill some mets; inhibition with slower growth and no spread then is our goal.

Pete, MSM is methylsufonylmethane, a derivative of DMSO, that is considered a great source of sulfur, and perhaps other cancer related benefits.

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

Guess who is about to get iv c and artisiane 80 four mornings a week for 8 weeks free local private hospital.
It's taken some string pulling, and chocolates and begging. But I will be 500 better off now insurance covers these cancer treatments. The word alternative does not come into it. The 300 pages of vit c research helped.

Success lies in the search and execution.

Hugs,
Pete

buckeye2
Posts: 428
Joined: Jul 2011

I wish I had words to comfort but none come to me. My thoughts and prayers are with you today. Lisa

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

finding out things have gotten worse despite best efforts, and it's pretty terrible. I'm so sorry you have to face this disheartening news. I hope some of the ideas that the others have given you will prove fruitful. Hugs and strength to you-Ann

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

finding out things have gotten worse despite best efforts, and it's pretty terrible. I'm so sorry you have to face this disheartening news. I hope some of the ideas that the others have given you will prove fruitful. Hugs and strength to you-Ann

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

Darn double posts.

mom_2_3
Posts: 965
Joined: Nov 2008

Lisa,

I don't have anything to add to the conversation regarding treatment options. I would say, however, that if you were able to find a trial that suited you and it was somewhere in NJ/NY, you are always welcome in our home. We are right next to a train station that gets you into Penn Station NYC in about 50 minutes. We are also central to various other facilities ere in NJ that may currently have trials.

I keep you in my prayers and you are always in my thoughts. You are so beloved to me, to us here.

I would send you bigger hugs than Phil if I could figure out how to code the HTML but as I can't, {{{HUGS}}}.

Amy

wolfen's picture
wolfen
Posts: 1324
Joined: Apr 2009

As I read your post yesterday, I was so sad to see that your results are not good. It just breaks my heart to see so many who are trying so hard with conventional and new methods of treatment who are not getting favorable results. I had seen an article the day before regarding a local man who has been traveling to Germany several times for a new treatment for a large brain tumor and his treatments are working. His tumor is shrinking. If we only knew the reason why some methods do not work for all. I have no idea if any of these places have any trials starting up, but we do have a couple of Mayo Hospitals, a new MD Anderson Center, and a Cancer Centers Of America in the Phoenix area. You might check with some of them as you are not terribly far from here.

Sending my love and hugs your way,

Wolfen

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

You can use this:

<H1> text here </H1>

and it will give you this:

text here

Easy, huh? An H2 is smaller, an H3 even smaller, etc.

Be well,

John

taraHK
Posts: 1961
Joined: Aug 2003

Sending loving thoughts your way. I think you are wise to consider various optons (possible clinical trials, your current natural approach, and other).

I certainly understand your concern (and your docs) about going on FOLFOX again. For what it's worth, when I've been on FOLFOX (or any of those slow, oxy infusions), I've done so as an in-patient. That's partly because of the culture here HK) and my dear but conservative oncologist. But I have had allergic reactions to the oxy. I get pretty heavy doses of premeds (I guess -- don't know what other get, really) and then they can keep a good eye on me. Yes, its a drag being in the hospital. But, it's OK. (Just saying -- not trying to push you that way).

I am concerned about your current levels of discomfort -- wish there were some way of getting all that under control, even before contemplating next approach to treatment/management.

Love,
Tara

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

Lisa,

I've already expressed my sadness on facebook, so I will just say that I am praying this is your time for a great miracle. It saddens me to see the picture of your lovely face, knowing that you're facing such dire possibilities.

*hugs*
Gail

karen40's picture
karen40
Posts: 211
Joined: Aug 2011

I pray the best plan finds you and you get a better answer regarding that lump.
Karen

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Lisa, dearest, keeping you in my most ardent thoughts and prayers. And sending you endless hugs and strength of spirit. Blessings and love to you.....Katie

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