Trouble with Dairy

by Madeline Mason
(Mid-Hudson Valley, NY)

Hello Bill and All,

I read with interest the recent post from the person who found out she was allergic to casein, and have to add my own story here.

I don't think I am "allergic" in the true sense of the word, but I cannot tolerate any dairy in any form, except for butter (I use grass-fed). Let me explain what happened.

I was dx'ed with breast cancer in August of '07, found to be Stage IV with a lesion at T-11 on my spine. (verified via PET and MRIs) I had IRT radiation to that spot (got rid of it) followed by large lumpectomy and axillary lymph node dissection (12 nodes, 5 positive) done by laser surgery with no pain and no complications. In December '07 I was told I was in remission.

The following January ('08) my cancer markers began to rise sharply (into the 300's) and, to my horror, a second PET scan showed a large mass on my liver. The doctors wanted me to do a chemo-embolization (this is chemo targeted just to the tumor, not systemic) but wanted more detailed scans first. They were all insistent that it was cancer, and not something else.

At that point I went home I embarked on the FO/CC protocol, following directions to the letter. I also began several other alternative protocols, including 36 pills a day of Univase Forte (proteolytic enzymes). At that time, the only mainstream treatment I was on was taking an Aromatase Inhibitor for my very highly estrogen sensitive cancer. (I had refused the recommended chemotherapy and chest wall radiation). Throughout my first year, I had been on all four of them- Arimadex, Femara, Aromasin, and Faslodex.

Three weeks after that PET scan the CT scans were done, and, to my incredible euphoria, absolutely NOTHING showed up in my liver!

But I was far from out of the woods. It was at that same time that I suffered a bout of what I at first thought was the flu- I had body wide pain so severe that I nearly wound up in the ER. But no flu developed, and the intense pain subsided after 2 days. Unfortunately, 2 weeks later, the same thing happened again. The throbbing pain felt like a migraine headache in every cell in my body. The attacks continued, perhaps every few weeks or so, and twice I did go to the ER for pain control, where an IV infusion of the anti-inflammatory Turidol wiped the pain out within minutes.

In April '08, a follow up PET scan showed nothing in my liver (thankfully) but some 4 or 5 new lesions showed up on my spine, and my cancer blood markers continued rising, about 100 points a month. By that time I had gotten sloppy with doing the FO/CC protocol everyday, especially when I was down at CTCA in Philadelphia for diagnosis and treatment for weeks at a time. It seemed quite obvious to all the doctors down there that the pain was coming from the spinal lesions- bone mets are known to be among the most excruciating pain imaginable. Nobody believed me when I insisted that the pain was not bone pain, and wasn't even in my spine. And how could bone mets pain go from level 9 pain to zero in between attacks? It made no sense.

At that point I still refused IV chemotherapy, but agreed to begin a low dose of a mild oral chemo drug, Xeloda, as well as monthly infusions of Zometa (for bone mets), switched yet again to a different Aromatase Inhibitor, and had 2 infusions of Avastin, an anti-angiogenesis drug.

Things got worse. I was still trying to do the FO/CC, as well as IV vitamin C infusions, and many alternative treatments and supplements. My cancer markers continued to rise, and the pain attacks became more frequent, more severe, and lasted longer, sometimes 5 days of writhing pain, with very little relief from oral anti-inflammatory medications. And I soon added nausea and vomiting to the mix, wrecking my stomach from so much Ibuprofen and Turidol. (These were the only drugs that barely touched the pain- narcotics didn't work at all, since I was also taking LDN, an alternative cancer treatment I refused to give up.)

I can't believe I lived like this for 6 months, until I was finally diagnosed with Polymyalgia Rheumatica, a horrific auto-immune disease of severe inflammation and excruciating pain. So in July of '08, a new PET scan revealed still nothing in my liver, but now I had cancer in "virtually every bone in my body"! I was horrified! Not only were all those treatments not working, I was getting so bad so fast, it was unimaginable. My cancer blood markers went sky high, one of them reaching almost 900.

At that point I decided to stop all mainstream treatments, except that I HAD to take high doses of Prednisone and a very low dose of a different oral chemo drug, Cytoxan, in order to get the inflammation under control. (I am fortunate to have a very patient centered integrative oncologist). My Crp at that time was a ghastly 203 (my rheumatologist said it was the highest she had ever seen) and my sed rate was 75. To recap, that was in August of '08. I was also taking fistfuls of every natural anti-inflammatory I knew of, including curcumin, quercetin, Pantethine, Boswellia, 5-Loxin, magnesium, alpha-lipoic acid, plus other supplements, and 100 grams a week of IV vitamin C at the Schachter Center for Complementary Medicine, as well as 20 mg. Melatonin and 4.5 mg. LDN at night.

Over the next 8 months, monthly blood tests saw my inflammatory markers slowly come down to extremely normal in April of '09- Crp down to 0.2, and sed rate down to 9. In February of '09 my 5th PET scan still showed "diffuse bony uptake throughout my entire skeleton", but the SUV number had dropped sharply from a high of 10.4 down to 6.8. I still did not have any bone pain from these so-called bone mets. And, incredibly, when I finally had my first bone scan in May of '09, (as opposed to all the PET scans I'd been having) absolutely nothing showed up anywhere in my bones.

But I was still suffering occasional breakthrough pain attacks, and finally (it took me long enough!) figured out that certain foods would cause or contribute to these attacks. Topping the list was dairy in any form, except for butter. It didn't matter that the cottage cheese was properly emulsified with the flaxseed oil, I still could not tolerate it. I also could not tolerate gluten, or anything aged, preserved, processed, fermented, marinated, or any seasonings such as those used on "all natural" store made rotisserie chickens. If I swayed from a very simple diet of homemade freshly prepared foods, I would have an attack.

I am now still taking the 50 mg. oral Cytoxan, as well as down to 3 mg. Prednisone. I have been trying to cut that down lower, but so far, have run into trouble if I lower it any further. And I have just gotten over a very mild 5 day pain attack, possibly due to the complication of having fallen off the porch in the middle of moving 2 months ago, and badly breaking my wrist, and trying to lower the Prednisone. I was hospitalized almost 4 days and had surgery to have an external fixator implanted. My cancer tumor markers have risen slightly (now up to 159 and 301) which distresses me terribly, but this whole thing was quite a trauma. And my eating got sloppy too, since, having just moved, and me with a broken wrist, we were eating a lot of fast food (read BAD food!)

Now I'm getting back on track, and hoping to see some positive changes with the next series of blood work. My diet consists of mostly grass-fed/free range meats, poultry, seafood, fish, lots of fresh vegetables, juicing, fruits, nuts. I stay away from grains except for an occasional gluten free treat. I stay away from dairy and soy, have an occasional treat of coconut ice cream. I cook with coconut oil, use olive oil on salads. I use chopped raw garlic and ginger daily, and take about 100 pills of supplements, and 100 grams a week of IV vitamin C plus have just begun adding 60 grams alpha-lipoic acid to my IV drip.

So, for all of you who have plowed through this very long winded story, I thank you. And my question is the same is the other writer who is allergic to casein- can the flaxseed oil be done with eggs (I have no problem with eggs) or another non-dairy food? I have gone back to taking a tablespoon a day of Carlson's Lemon Cod Liver Oil, but wonder if I should be doing flaxseed oil in addition or instead. Also, does anyone know about Brian Peskin's Parent Essential Fatty acids? I have read conflicting reports about their efficacy.

Thank you Bill for your tireless work in Beating Cancer Gently.

Very Best,
Madeline Mason
Hudson Valley, NY
MyTGoldens@aol.com