The Leukemia & Lymphoma Society - Fighting Blood Cancers
10 Replies Latest reply: Jun 7, 2012 9:17 PM by Newfy RSS

TBL-12, Anyone using it?

tigersaver Registered Users
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Is anyone using a product called TBL-12? Sea Cucurmber and others. This stuff cost like $500 per month. Do a search on youtube for

TBL-12 and you will see a few who claim it has saved them. I am not selling TBL-12. I haven't used it, but am considering it for a few months.

Would like to hear from someone who has tried it.

  • Re: TBL-12, Anyone using it?
    Betsy Registered Users
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    Hi,

    I have been using TBL-12 since November, 2009, to treat asymptomatic multiple myeloma. I have no symptoms yet so the objective is to keep my blood work numbers

    down as long as possible. I have discussed TBL-12 at length with the company and feel very confident in their knowledge about the disease, about their product, and their dedication to treatment.

     

    I was not able to participate in a TBL-12 clinical study with renowned myeloma specialist Dr. Sundar Jagannath at Mt. Sinae Hospital in New York because of another condition I had but I know that the study looks promising and I am encouraged that this could be a major new development of the treatment of multiple myeloma and other diseases. Once I'm 100% off the medication I hope to join the study.

     

    Because I've been on medication which artificially lowers my myeloma numbers, I cannot tell you with 100% assurance that it has reversed or stabilized my asymptomatic condition, but we have been encouraged that my numbers are staying low even though I've been tapering for six months and am now on a very very low dose of Prednisone, which doesn't stay in your system. If my numbers continue to stay low once I'm completely off the Prednisone in a few months, it will clearly be due to the TBL-12.

     

    TBL-12 is an immune modulator so it is also going to be good for someone who is on any challenging medication, as it makes you feel better. I believe the TBL-12 was largely responsible for how well I handled some very difficult drugs and also may have had an effect on my autoimmune issue being resolved so successfully.

     

    The last thing I would say is that I don't think one can expect any holistic/natural product to solve a problem in a few months. I would recommend planning to take it for at least six months or more to see if it has an impact.

     

    Best wishes.

    • Re: TBL-12, Anyone using it?
      wendygirl Registered Users
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      Hi,

       

      Just found this post while going through some older posts (I am new to this site) and wanted to respond that I am taking TBL12 and have been for about a month.  I haven't been on it long enough to know if it is making a difference but will stay on it until I know one way or the other.  I have been taking the same amount that is being used in the myeloma study, 2 in the am and 2 in the pm.  Since this is a food and not an herb or supplement I feel good about taking it with other things, no interaction problems.  I hope to see good results! - Wendygirl

    • Re: TBL-12, Anyone using it?
      Newfy Registered Users
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      Betsy, I get confused how these board work, but I will try. I am 65 years old, but I've been sick my entire life. In 1995, I was dx with

      systemic lupus, fibromyglia, reynauds, and possibly luekemia because it runs in both sides of my family.  My first counts for leukemia

      turned out to be MGUS.  My count was 4610. the next bone marrow went down to 2000's which they still are. So now they were

      giving me BM biopsies all the time and it was smoldering myeloma.  Now, in 2.2012, I was just told I had lung cancer.  I can't have surgery because I don['t want an oxygen tank because they would have to remove 1 lung for I have on my right lung 2 lobes with

      cancer on it.  No radiation because I think I have nodes or somethiing.  My x hub told me about TBL-12.  After asking my doctor if I

      could try it, he first said no and then said yes.  It is for myeloma and blood cancers and for autoimmune diseases. I have to say that

      the lupus is no longer causing me pain and joint pains and headaches.  If you love the taste of fish, you willl really like it. Some take one in the am but I am taking 1 in the am and 1 in the pm. I have nothing to lose in my case, but I am trying everything for my children.

      I just had my first chemo on Friday.  But, if that TBL-12 takes away all the pain, it is worth it to me. As far as the MGUS and lung,

      I don't cough at all.  I just want everyday to be pain free for me.  I haven't had that feeling in such a long time.

  • Re: TBL-12, Anyone using it?
    DrewS Registered Users
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    Hello,

     

    I have been involved with TBL-12 (www.tbl-12.com) for a few years now. The product has been involved in a number of clinical studies related to the treatment of Myeloma in the USA.

     

    A recent abstract published in Blood Journal which have shown some fantastic results when taking TBL-12 with Velcade. The details of the abstract are:

     

    http://abstracts.hematologylibrary.org/cgi/content/abstract/118/21/5109?maxtoshow=&hits=10&RESULTFORMAT=&fulltext=tbl-12&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT

     

    The details of the clinical trials and previous abstracts can be found here:

     

    http://clinicaltrials.gov/ct2/show/NCT01096810

    http://clinicaltrials.gov/ct2/show/NCT01302366

     

    http://abstracts.hematologylibrary.org/cgi/content/abstract/116/21/5042

     

    For more information on TBL-12 you can visit their websites (only Australia and USA so far) here:

     

    www.tbl-12.com

    www.tbl-12.com.au

    • Re: TBL-12, Anyone using it?
      wendygirl Registered Users
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      Thank you Drew for posting these TBL-12 results.  I have been taking it for about 8 months and was wondering about the results.  It seems promising, even though its not specifically being tested on CLL patients.  I can say for myself that I have been stable since my diagnosis, no increase in node size or WBC.  I don't know if its due to good prognostics, TBL-12, or both, but I will continue taking it.  Again, thanks - Wendy

  • Re: TBL-12, Anyone using it?
    porciniak Registered Users
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    There's a new thread in Let's Talk if anyone care's to comment!

  • Re: TBL-12, Anyone using it?
    porciniak Registered Users
    Currently Being Moderated

    There's a new thread in Let's Talk if anyone care's to comment!

  • Re: TBL-12, Anyone using it?
    porciniak Registered Users
    Currently Being Moderated

    There's a new thread on the Let's Talk forum, if anyone's interested!

  • Re: TBL-12, Anyone using it?
    christinemtaylor Registered Users
    Currently Being Moderated

    I have been taking TBL 12 for just over a year now.  I have Multiple Myeloma and had lower back, bone and knee pain enough so that I really couldn't walk very far at all.  I would also get very tired and have to take a nap most days which infuriated me as I am a very active lady and wanted to remain that way.  Within a few weeks after taking the TBL 12, my pain slowly subsided and then, went away.  It has not returned.  I have no doubt that the TBL 12 did it.  There is absolutely no other explanation.  It was the only change I made during the last year. 

      I get energy about 30 minutes after taking it.  If I take it too late at night I sometimes have too much energy to sleep.  It is odd.  I have no explanation nor can I tell you how or why it works.  I only know I would kick and scream if someone tried to take it away from me.  My lifestyle has changed 180 degrees from a year ago and I am so happy.  Yes, I have cancer but it is a lot easier to take when you have no manifestations of the disease.  Since taking the TBL 12, no one would ever know I have cancer.  I am back working 2 and 3 days a week ( I am 66 years old - I probably wouldn't be doing full time teaching anyway at my age cancer or not).  I am so glad my oncologist turned me on to this amazing product. 

    Also, I have just started chemo (which has many expected side effects) after 2 months I am having none of the side effects other patients complain about.  Neuropathy, stomach problems, rash, exhaustion.... if you have cancer you probably know the list.

    • Re: TBL-12, Anyone using it?
      Newfy Registered Users
      Currently Being Moderated

      Hi Christine, In 1995, I was dx with blood cancer MGUS, lupus, and then adding on and on.  After going through numerous diagnosis, I finally found the bomb.  I have lung cancer now.  The only thing I can do is take chemo which tomorrow is my 2nd time.  The primary on\

      on my report is MGUS and two of 3 lobes in my right lung has cancer. I have decided not to have surgery or radiation..which I can't have

      anyway, so a friend sent me the TBL 12.  Yes, I smoke, but also ask people what they did for a living.  In the 1960's, there was no

      ventilation in the rooms; rooms using pastels, charcoals, oils, linseed oil, and every horrible substance one can breathe. I am 65 and all of these years, I never realized it.

       

      This is what I know for sure:  I have no more pains from the joints, lupus, fibromyglia.  <all automimmune problems in years and years>

      It is expensive, but having no more pain is a Godsend.  Hopefully, it will help with my lung even though I have a poor prognosis.  If you like the taste of fish, which I do, I enjoy the TBL-12.  If you don't there are bagels to eat with it, etc.  Christine, because I developed neuropathy; falling, etc. my neurologist is the person that found the lung cancer after a PET scan in March.  I will have my 3rd CT in July.

      My 2nd one showed it didn't spread. They are watching me very carefully. I don't want any aggressive treatment.  My last wish would  be to have my 2 yr old grandson have remember me.