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Comments

  • PS73
    PS73 Member Posts: 171
    edited October 2009

    Liz, Im glad you posted this.  I just bought some yesterday but Im hesitant to take it.  I thought? it was a natural blood thinner and I could go off of my coumadin by taking aloe vera liquid, but the more I read on it, it appears that it helps in clotting the blood, which would be bad for me.  I couldn't find hard evidence of this so does anybody have any thoughts on it?

    I did read that its a natural laxitive and a cellular healer and just great all around - I just gotta make sure its ok for someone w/ blood clots. 

  • PS73
    PS73 Member Posts: 171
    edited October 2009

    Liz, Im glad you posted this.  I just bought some yesterday but Im hesitant to take it.  I thought? it was a natural blood thinner and I could go off of my coumadin by taking aloe vera liquid, but the more I read on it, it appears that it helps in clotting the blood, which would be bad for me.  I couldn't find hard evidence of this so does anybody have any thoughts on it?

    I did read that its a natural laxitive and a cellular healer and just great all around - I just gotta make sure its ok for someone w/ blood clots. 

  • PS73
    PS73 Member Posts: 171
    edited October 2009

    Liz, Im glad you posted this.  I just bought some yesterday but Im hesitant to take it.  I thought? it was a natural blood thinner and I could go off of my coumadin by taking aloe vera liquid, but the more I read on it, it appears that it helps in clotting the blood, which would be bad for me.  I couldn't find hard evidence of this so does anybody have any thoughts on it?

    I did read that its a natural laxitive and a cellular healer and just great all around - I just gotta make sure its ok for someone w/ blood clots. 

  • Merilee
    Merilee Member Posts: 734
    edited October 2009

    Anyone taking or considering misletoe?

  • Merilee
    Merilee Member Posts: 734
    edited October 2009

    Also today I picked some Iodine in the form of kelp drops. 4 tiny drops a day is all you need.

    The brand is World Organic Liqui-kelp and is less than $5 for a 2 oz bottle.

  • soapsnug
    soapsnug Member Posts: 24
    edited October 2009

    Hi Blaircoff,

    My CA 27.29 was tested in July and was 24.  The "normal" range on lab report indicates a level that is less than 38.  My oncologist was happy with my results, so I felt okay about it.  After reading your post I started to wonder!  I did a little research on the internet and this is what I found on Susan Love's website:

    • --a normal CA 27.29 level is usually less than 38 to 40 U/ml (units/milliliter), depending on where the lab test is done
    • --because anything under 40 is considered normal, you shouldn't worry if it's 20 one time and then 30 another time
    • --just because the test result is higher than 40 it doesn't mean your cancer has spread. Endometriosis, ovarian cysts, first-trimester pregnancy, benign breast disease, and kidney and liver disease are just some of the noncancerous conditions that can raise your CA 27 level   
    •                                                                       

    If you'd like to do further research on this blood marker, there are a number of other websites you can visit--I just Googled "CA 27.29", and lots of stuff popped up.

    Merilee--I recently started to take the same iodine supplement as you.  I take a bit more than the recommended four drops, as I'm trying to take about 1 mg/day.

    Hope everyone's having a great weekend!

    Audrey

  • Springtime
    Springtime Member Posts: 3,372
    edited October 2009

    I wonder about this CA27.29 test. I had a huge tumor in me prior surgery/chemo, and mine was 12. After chemo, it was 20 something. I was initially worried, but then read that if a tumor is breaking down, bits are in your blood stream, and this can make the number higher, after chemo, rads, etc. 

    My ONC doesn't seem to believe in it. but maybe if you compare trends to yourself, it would make sense? I still don't get why mine was 12 when i had a 5cm tumor. Maybe it wsa totally encapsulated? maybe the test is crappy? i have no clue!!!! 

  • soapsnug
    soapsnug Member Posts: 24
    edited October 2009

    Hi Vivre and Deanna,

    I read your posts about the issues with your vision.  I have always had great vision, but recently started to experience blurred vision--seemingly out of nowhere.  I started to wonder if my vision was changing because of my age, as many of my friends and family members told me that when they turned 40, they started to have vision problems.  After reading your posts, I started to wonder if it might be due to the DIM.  Not only had I been taking that regularly, but I also eat quite a bit of broccoli, cauliflower, and purple cabbage--pretty much daily.

    I had to stop taking the DIM a couple of weeks ago, and have also had to stay away from cruciferous vegetables because of some pre-colonoscopy tests that I have to take--instructions are no broccoli or cauliflower.  Since I stopped taking the DIM, the blurry vision has eased up, and is practically gone!

    I plan to start taking the DIM again after my colonoscopy next month and see what happens to my vision at that point.  If the blurriness comes back, I guess it's a pretty good indication that those two things might be related.  That would be a real bummer for me, as I feel that one of the most important supplements I was taking was the DIM.  I'll post about it again in a month or two, after I've been back on the DIM for a while.  Anyone else feel like their vision's been affected by DIM?

    Audrey

  • deni63
    deni63 Member Posts: 372
    edited October 2009

    My CA 27.29 initially tested at 14. When my ND did the test a couple of months later, he said he expects that it will go up a little bit to about 17. Sure enough when the results came back I was right at 17. He said it was nothing to worry about and it is perfectly normal to see a slight flucuation. He said that you can test it 6 times in a year and come up with different numbers every time. He also says that it is not a completely accurate way to monitor the situation but it helps to include it as a diagnostic tool so that we can keep any eye on any trends. He also tests NK cell activity, D3 and I asked him to test c-reactive protein and albumin levels for inflammation markers. We just did all of these tests last week and I haven't gotten the results back. My gyno, who is holistic also did a bunch of testing that I havne't gotten back yet, he did allergens and food sensitivities, homocystein levels, hormones and thyroid.

    There is no blood test that is 100% accurate in detecting cancer - unless it is rampant in your bloodstream. My husband had a physical two months ago and did his PCP did a complete blood workup. He told him his results were excellent and that he was in perfect health! HUH! Two months later he is diagnosed with a 6 CM tumor in his kidney. We are going to try to get some bloodwork done for him by my ND to look at tumor markers, NK activity, etc. prior to his going in for surgery as a baseline. Would be interesting to see how that comes back.

    Spring-that is interesting that your markers came back so low prior to surgery with the tumor inside of you.

  • Merilee
    Merilee Member Posts: 734
    edited October 2009

    Soapsnug

    How long after stopping the DIM did you notice an improvement in your vision?

  • rreynolds1
    rreynolds1 Member Posts: 62
    edited October 2009

    Hi Everyone,

    Who and when are they testing your markers?  I don't think anyone has done that or at least they are not discussing it with me.  I was diagnosed in Feb. 09 and am through all my treatments except that I am taking Arimidex.  I know many of you have decided against these drugs but I opted out of chemo (OncoTypeDX score was 18) and felt I needed to take it as my tumor was VERY estrogen receptive.  I have been on it for 2 months without any SEs.  Just curious about the marker thing.

    Also, not one of my docs has given me diet or excersise advise.  I am an avid reader and have found out everything I need to know...I hope.  Docs are really missing the boat on this one.  Funny that many of them say that other than a multi, vitamins are a waste of money but they tell us not to take anti-oxidents while getting chemo and radiation.  Hmmmm.

    Rosean

  • deni63
    deni63 Member Posts: 372
    edited October 2009

    Hi Rosean - You probably need to go to see an Naturopath or Holistic doctor if you want to test your tumor markers. Regular oncologists don't normally test them. The regular oncologists I had seen did not believe in them and did not test for them. Only my naturopath and holistic gynocologist will test them as a tool in monitoring.

    As for nutrition, when I went to one of the leading cancer centers in the country, they never once mentioned diet or nutrition to prevent a recurrence. When I spoke to my surgeon, she admitted that there is a strong connection between certain types of cancer, breast being one of them, and nutrition. But when I told her that I had changed my diet dramatically and was interested in nutrition, she looked at me like I had 3 heads. Most conventional doctors won't tell you to change your diet or take supplements. They simply don't know much about it. It is not something they are required to learn in medical school. They are taught to diagnose and treat, not prevention. You need to see a Naturopath if you want to pursue nutrition and supplementation as a means of prevention.

    Deni

  • deni63
    deni63 Member Posts: 372
    edited October 2009

    I have a question for you guys. Before I was diagnosed, I had an issue where my left hand (same side as my tumor) would fall asleep at night and i would have to shake it out several times during the night to wake it up. I asked my PCP at the time about it, but he didn't think much of it. When  I was dx, I never connected it to my BC until a friend of mine who had cervical cancer mentioned that she had the same situation prior to her surgery. The leg on the side of her body that had the cancer would get numb at night. She happened to mention it to her acunpuncturist who told her it was her cancer. When I asked my surgeon if there could be a connection, she naturally dismissed it. Sure enough, when my tumor was removed, my hand stopped falling asleep. IT hadn't fallen asleep for months. The last couple of weeks, I have had little jabs in the breast that I had my tumor in and my hand has started to fall asleep at night. Could this be a sign of a recurrence?? I am a little nervous about this. Has anyone else ever experienced this?

  • mandy1313
    mandy1313 Member Posts: 978
    edited October 2009

    I haven't had the "falling asleep" issue, but this may sound odd, I have had cancer on two occasions. At the time of diagnosis and for a period before both times, I had lots of ear wax.  In fact, that is what made me insist on the mammography in June 2008 for this cancer.....I had fallen between the cracks, as always, and no one was there to remind me to get one so I started asking my internist in May and and finally in June, I insisted that I had to have a mammography.  I think our bodies give us lots of messages if we listen.

    Deni, if you feel that it might be something insist on follow up for it.  It is ok to have follow up and to find out that you are fine. In fact, that is the best kind of follow up!!!

     Hugs to all.

    Mandy

  • WildRose
    WildRose Member Posts: 15
    edited October 2009
    Merilee, mistletoe is poisonous. I haven't heard of it as a cancer preventative or treatment.
  • anondenet
    anondenet Member Posts: 261
    edited October 2009

    < </p>

    Mistletoe, known as Iscador in alternative medicine, is available from the manufacturer, Weleda. You need a doctor who is experienced in using it to prescribe it. I think Weleda will give you the name of physicians in your area.

    http://www.iscador.com/index.aspx

    This treatment is covered by insurance in some European countries. This is what Suzanne Somers uses as part of her regimen.

    Dr. Tom Cowan in San Francisco has spoken and written about it. He will be speaking at the Weston A. Price Conference in Chicago in November along with Nicholas Gonzalez, MD. http://www.westonaprice.org/conferences/2009/presentations.html

    •  
      • Tom Cowan, MD:The Fourfold Treatment of Cancer (Sunday Track III, 10:30-11:50) 
        A review of holistic treatments for cancer including diet, supplements and herbs, with an in depth look at the use of Iscador (mistletoe extract) in successful European treatment protocols.         

    <</p>

  • deni63
    deni63 Member Posts: 372
    edited October 2009

    I actually know someone who uses Iscador in her regime. She injects it. I don't think it is something that you use for prolonged stretches but I am not sure. Next time I see her I can ask her about it. I'm sure Anom's links above are very thorough.

    Mandy- I do have some f/u tests coming up in the next several weeks. So hopefully my fears will be squashed really soon. I'm probably being paranoid!

  • Merilee
    Merilee Member Posts: 734
    edited October 2009

    Deni

    I know what you mean about being paranoid. Every time I feel  twitch or anything my mind goes straight to cancer. I hate it. I will be happy when that stops. So far so good but I am only 9 months out from dignosis and am still realing  from the truama of loosing my sense of well being that I have always taken for granted.

  • deni63
    deni63 Member Posts: 372
    edited October 2009

    Exactly! My last surgery was 6/29 - so I am only a few months out. They say that for ER-, the highest risk for recurrence is in the first 2 years. Then, the risk drops. After 5 years it drops even more. Once I start hitting those landmarks, I am sure I will start to relax a bit more. I guess it is still so fresh. And now with my husband's diagnosis, paranoia is always tapping on my shoulder. UGH!

  • Merilee
    Merilee Member Posts: 734
    edited October 2009

    I struggle with the mental part more than anthing. I know my thoughts are powerful and when My brain goes there I start to either sing a favorite song or force myself to think of all the love I have in my life, or something that has made me laugh. It is a challenge to get control of my brain however.

  • anondenet
    anondenet Member Posts: 261
    edited October 2009

    > 

    Vivre, or anyone in the midwest,

    Is anybody thinking of going to the Weston A. Price Conference to see Drs. Cowan and Gonzalez speak on alternative cancer therapies?

    anom

  • Springtime
    Springtime Member Posts: 3,372
    edited October 2009

    Rosean, you asked about tumor markers...

    Nobody ever told me about my turmor markers either, until I requested to have them checked. Then all of a sudden, I was given the data. (odd). I think it is because my ONC does not really believe in it. Not sure why they test it then. Maybe the check all pts to see if it makes any sense in that person. For me, I had a large tumor prior to any treatment, and my marker was 12. Maybe this has her convinced it won't be meaningul for me? who knows.  

  • vivre
    vivre Member Posts: 881
    edited October 2009

    Anom-That conference sure sounds great. I was just reading the speakers. WOW! I was really getting excited because it is really close for me (about a 20 min. drive), but then I looked at the price. Ouch! Why is it so expensive? Anyway if you are going, I do have 2 extra bedrooms.

    Deni-My arm use to fall asleep-until I got a new pillow. I now have one of those memory foam pillows with a curve in them. It cradles you neck and takes the stress off your spine. Viola! No more tingling extremeties. I use to wake up with a sore neck too, and now I don't. Get a new pillow! As for the pains around the tumor site-this is totally normal. Do you do any massage to break up the scar tissue? Try it. Also try compresses of castor oil with a heating pad over it. This draws out the toxins. Some say it even kills cancer, who knows. But I have tried it on my scar. I have found the iodine has been the best way for my breasts(what is left) to get healthy again. Since I have been taking iodine, all the pains have stopped and the scar is almost gone. I had a hard knot at  the site of the radiation "boost" that really ticked me off. The iodine seems to be helping it to soften considerably. Don't think the effects of treatment are going to go away quickly. I have had three thermographs since I finished treatments. Each time, the "hot spots" that are the result of radiation have dimished, but it really upset me that it was still apparent. I can't believe all this stuff takes so long to detox. But I can feel a lot  of difference finally, and I think my next therm will probably show a big improvement. So stop worrying about every twinge. Remember, when you let cancer control your thoughts, it controls you. Concentrate on letting thoughts of getting you and your hubby well with your  proactive daily routine.

    Merilee-I don't pay attention to any of those risk factors, after a certain time. In fact I refused to even do the onc test because I just felt that putting all those numbers in my head would just give me "stuff" to worry about. I never wanted to be a stat or to live by stats. As you said, our bodies do send us messages. That is all we need to pay attention to. I heard that little voice telling me to check out a lump I felt and I did so right away. I think this saved me, not only from dying of this disease, but from having to do chemo, which scared me so much. So keep listening to your wonderful women's intuition and stop listening to some statistian who is just charting numbers. We are women, not numbers.

    Soaps-as for the macular degeneration, who knows if it is the I3C. I wish there was some study on it. I was just drawing the correlation because it does the same thing as tamox, and tamox causes it. Maybe it is a result of the lower estrogen levels, which both effect. We know that estrogen is a reason for a lot of aging problems, good and bad. That is why I am leaning towards hormonal balance, with progesterone, rather than hormone blocking of any kind. It just seems more logical.

  • havehope
    havehope Member Posts: 77
    edited October 2009
    My onc is checking the markers every time. She is looking for sudden movement. All the time I had cancer the markers were in the normal range, which gave my onc confidence that it did not spread to other organs. So far so good, I am NED. I see her every 6 months for blood work.   In March 08 when I found my lump CEA was 1.2 and CA 27.29 was 5.53.Back then my doctor told me not to worry is a cyst.In Sept CEA was 1.59 and CA was 27.29 was 14.03 - before surgery.After surgery, before chemo Nov 08 CEA was 1.3 CA 27.29 was 11.47 .March 20, 09 mid chemo (just started 12 Taxol) CEA was 0.7 and CA 27.29 was 10.August 28,09 16 weeks post chemo CEA was 0.8 and CA27.29 was 8.Question about PET scan. I had a base scan done last year before surgery (Oct 08). Did any of you repeat the PET scan and if yes when? How often should this test be done after you are NED? 
  • deni63
    deni63 Member Posts: 372
    edited October 2009

    Viv - it is really funny that you mention my pillow! I have the most ridiculous pillow that I have probably had for the last 35 years. It is as flat as a pancake. Whenever I go away, I have to bring my pillow with me because the ones in hotels are so puffy and they bother my neck. But, you are absolutely right, perhaps it is time to look into other options. Thanks for that tip!

    As for the losing sight. I am 46 and have noticed that within the past couple of years, my eyesight has faded just a tad. I don't take tamox, DIM or I3C. And haven't done chemo.

  • soapsnug
    soapsnug Member Posts: 24
    edited October 2009

    Hi Everyone,

    Merilee--I would say that within two weeks of stopping the DIM, the blurry vision was basically gone.  Like you and Deni, I too tend to worry about recurrence.  When something is amiss with my body/health, one of the first things I wonder, now, is if it's cancer.  Like Lorraine, I recently had an unexplained lump--mine was by my bikini line.  The first thing I did was to check to see if it was an ingrown hair--it wasn't.  In my pre-cancer life, I would've probably said, "Hmm, that's strange", and gone about my business, confident that it would probably resolve itself.  Currently, however, my first thought was, "Is this cancer?!".  I did calm myself down and waited a short while to see if went away before going to the doctor.  It never did go away, but my doctor assured me that it was just a normal lymph node, and nothing more.  I do try to watch myself, and remind myself that negative thoughts and worry are not good for one's mental and physical health, and may contribute to the development of cancer.  This usually helps calm me down, and like Merilee, I try to think of something more positive or sing a song that I love.  One thing that I always remember from one of my psychology classes from college or graduate school is that if you soften your face and smile, you immediately start to feel better.  Changing one's thoughts is great, too, but it really is difficult to feel too badly when you put a little smile on your face!  

    Roseann--My oncologist tested my CA 27.29.  She also did the usual metabolic panel and CBC, and thought it was important to check my vitamin D level and estradiol.  She seems very open to testing for various things.  I was impressed with her when she asked me, at our first meeting, what my idea of good follow-up treatment with her would be.  I told her that I didn't really feel comfortable just having clinical breast exams for the foreseeable future, and that I would like to do a yearly MRI or other type of scan, if possible.  My breast surgeon, who I see every three months for clinical exams, has continued to assert that nothing other than clinical exams is necessary, so she won't prescribe them.  My oncologist said that insurance companies do not generally okay MRIs for women who've had bilateral mastectomies, as they don't believe it's necessary.  Still in all, when I said I would like to have one, she lobbied for me and I was able to have a recent MRI, which, thankfully, showed no abnormal findings.

    That being said, my oncologist is very conventional.  My estradiol level was 150, which, while apparently normal for your average pre-menopausal woman, is of concern for me, because my cancer was highly ER+.  When I pressed my oncologist to tell me what a better level for me would be, she said 50.  I was pretty distraught, as my level is three times higher than the level that would make my doctor happy!  I asked her to tell me what I could do to help lower my level, and of course, she had nothing to say, as far as diet and exercise are concerned.  Her idea was to take a wait and see attitude, and retest the blood in 6 months. What--how is this going to help me?!  Likewise, my conventional gynecologist, internist, and breast surgeon, all of whom I really like, had no good suggestions for lowering estrogen other than medication or ovary removal (which was not recommended, by the way, just mentioned).  Like so many here have said before, it was totally up to me to do the research and decide what alternative things I could do to try to help lower my estrogen.  I am now off of my supplement regimen for the time being, as a result of this upcoming colonoscopy and pre-surgical tests that I've had to do, but once the procedure is over, I will once again start taking the supplements that I believe are helpful.  I'll see what my next blood results are (I'm scheduled to go for blood work in a couple of months), but regardless, I am most likely going to consult with a naturopath in the near future.

    Audrey

  • rreynolds1
    rreynolds1 Member Posts: 62
    edited October 2009

    I had not been to a chiropractor in many years but in an effort to cover all basis, I went on Fri.  She gave me a print-out that was a picture of the spine and the areas of the body that are effected when the spine is out of alignment.  She said that the brain/body connection is off in that area and it could lead to disease.  I had shoulder issues for years and as it turns out the corresponding area of my neck was way out of alignment.  I had a full set of exrays and will be going regularly for awhile.  Just one more thing to look into. 

     Roseann

  • Northstar
    Northstar Member Posts: 31
    edited October 2009

    I'm wondering if any of you has tried a diet approach to cancer treatment, without anything else (such as surgery, chemo, drugs, radiation, etc.).    What did you try and how did it work?    I'm asking because this is what a relative of mine is planning to do and my husband and I are concerned.    Thanks--

  • Merilee
    Merilee Member Posts: 734
    edited October 2009

    Hi North Star

    I am glad you came over to check out this thread. Many of us are on natural treatments that include organic food and natural supplements. I opted out of chemo and radiation. I tried Tamoxifen for 3 months and had devastating results after the first 2 months.

    If you look back up this thread a few pages you will see that many of us just posted our supplement and diet regimens. Good luck on your search.

  • Northstar
    Northstar Member Posts: 31
    edited October 2009

    Hi, Merilee,

    Thanks for your reply.  I'm wondering if you did have surgery??  She is not planning even to have that.  

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