latest CEA results- not good

2

Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    talked to my onc
    Oops again- triple post- don't know how that happened!
  • baldwin
    baldwin Member Posts: 25
    lisa42 said:

    talked to my onc
    Oops again- triple post- don't know how that happened!

    I just posted a few minutes ago.
    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
    John23 Member Posts: 2,122 Member
    lisa42 said:

    talked to my onc
    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

    Lisa -
    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
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Lisa
    Lisa,
    I am sending you my love and prayers. You are on my heart.

    Aloha,
    Kathleen
  • John23
    John23 Member Posts: 2,122 Member
    baldwin said:

    I just posted a few minutes ago.
    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.

    Baldwin -
    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
  • jjaj133
    jjaj133 Member Posts: 867 Member
    Lisa, i am so saddened by
    Lisa, i am so saddened by this news. like everyone else, i admire your strength and am praying for you.
    hugs, judy
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Prayers
    My thoughts and prayers are with you.

    Hugs! Kim
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    More hugs and love sent to
    More hugs and love sent to you dear friend!

    Love ya, Gail
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    comparisons
    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
    lisa42 Member Posts: 3,625 Member
    tanstaafl said:

    comparisons
    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?

    tanstaafl
    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
    pete43lost_at_sea Member Posts: 3,900 Member
    that damm cea
    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
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    lisa42 said:

    tanstaafl
    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.

    nice list lisa, you trying to beat mine
    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
  • buckeye2
    buckeye2 Member Posts: 428 Member
    I wish I had words to
    I wish I had words to comfort but none come to me. My thoughts and prayers are with you today. Lisa
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    lisa42 said:

    tanstaafl
    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.

    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.
  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I've been in your shoes,
    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
    annalexandria Member Posts: 2,571 Member
    I've been in your shoes,
    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
    annalexandria Member Posts: 2,571 Member

    I've been in your shoes,
    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

    Oops!
    Darn double posts.
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Lisa
    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
    wolfen Member Posts: 1,324 Member
    mom_2_3 said:

    Lisa
    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

    Lisa, My Beautiful Friend
    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
    John23 Member Posts: 2,122 Member
    mom_2_3 said:

    Lisa
    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

    Amy -

    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