We need help on the road to remission

Hi, my mother was diagnosed in September of 2006 with stage 4 MMMT endometrial cancer that had involved some lymph nodes. She had a complete hysterectomy followed by six months of chemotherapy (carboplatin and paclitaxel) and an additional five weeks of radiotherapy. Despite the fact that her type of cancer was aggressive and progressed, she responded very well to the chemotherapy and her CA-125 blood tests showed an extreme drop in the tumour markers just two treatments in. The amount of chemo was also increased by the third or fourth treatment to assist in wiping out any residual cells that were not showing up on the normal tests. Other than the normal side effects of chemo, she withstood the ordeal relatively healthy.The five weeks of radiotherapy had more of an effect on her however, and the last year and a half has been spent trying to remedy, or at least diagnose the cause of, the intense, painful side effects from the treatments; her physical mobility has been badly impaired and she has great trouble controlling leg movement. We've seen chiropractors, kinesiologists, rheumatologists and occupational therapists, yet nobody has been able to provide any concise answers. We also see a naturopathic physician (who believes in complimenting traditional cancer treatments) regularly.

We found the follow-up visits from the local cancer agency to be too far apart (only one basic examination every three months with no CA-125 tests), so we decided to have a battery of blood tests ordered by our naturopath as recently as late May of 2008. The verdict was, that a year and a half after the initial diagnosis, our mother was still cancer free with her tumour markers at a below average 9.3 (15 and below is considered healthy, I think). With this in mind, we resumed our quest to find out the cause of the immobility, and continued to see our rheumatologist. He had some scans of the abdomen ordered, and when they returned, he mentioned that he had seen some swelling of the lymph nodes near the aorta and that we should see a GP to explore this further as it could be an indicator that the cancer was recurring.

This was around mid June. By now our stomachs had gone on edge since our mom had just discovered a minor swelling in her neck's left lymph node as well. The visit to the GP on June 27th shattered us when he examined the neck swelling closer and declared it on sight to be an advanced recurrance of metastacised cancer that might well be beyond cure. We made an appointment with the cancer agency again, yet on a follow up call, our original oncologist announced that she and her team had seen the abdominal scans, and had determined that the swollen lymph nodes by the aorta were not something to be at all concerned about, but, due to the activity in the neck, we should have an examination in about two weeks. At this time, after a thorough examination by another oncologist and x-rays of the neck, we were told that the neck swelling was likely not cancerous either, and to come back in another three weeks for a biopsy and blood tests just to make sure. Diagnosis: the lumps were soft and likely an infection of the lymph nodes. All indications suggested that the GP had overreacted, and we should remain cautiously optomistic that our mother was still in remission.

So, with some relief, we returned on Wednesday July 30th to see the same, original oncologist, who had performed the initial hysterectomy in 2006. Surprise: she examines the exact same nodes, declares them hard (although we didn't notice any density difference ourselves between the two examinations), likely indicative of cancerous activity in the abdomen after all, and tentatively orders four more months of the same chemotherapy regiment to start in ten days, that being August 12th of 2008. A biopsy and blood test are done; the results are expected to return on Thursday the 31st, but due to the approaching weekend, we weren't to know of the results until Monday the 2nd. As it turns out, we are never called. Despite multiple inquiries and telephone calls to the cancer clinic, we don't get any information about either tests until the morning of August the 12th, hours before being admitted for more chemotherapy. What's worse, we don't even get a concise answer, just a hazy declaration that "chemo is necessary" (that means the biopsy was positive I suppose? What about the CA-125 levels?)

Now, as I write this, my mother is about halfway (we hope) through the recovery stage of the first dose of chemo, and the pain/dizziness/sickness is intense. Why I'm writing this is to get some answers, because everybody we visit seems to disagree with each other and we've experienced a great amount of information conflict, or lack of information at all. Our oncologists, always stressing that they won't use the word "cure" in regards to my mother (despite her stellar initial recovery) are treating the recurrance as a wait and see affair. We (my sister and myself) are looking (in all realism) for a total cure. Our lifesaving crusade is inspired by the works of Gary Null, Dr. D. Barry Boyd, Lorna Vanderhaeghe (a Vancouver women's health expert and bioidentical hormone advocate), and lately with great interest, Rudolph Breuss, author of the Breuss Total Cancer Therapy. We need all the information support we can get while we form a strategy. If you have something to say, no matter where in the world you are, we need you! If anyone here has tried the Bruess Therapy, please let us know. We'll be asking some specific questions about it soon.

Thanks from Vancouver, British Columbia,

The Lifesavers.

There is an email support group for patients with MMMT/Carcinosarcoma.  See http://health.groups.yahoo.com/group/UterineMMMT/ .

Your mother should ask for copies of her path and surgery reports, with should give you the informatio that your docs office isn't being clear about.

I would not bet my life of the Breuss diet.

Hi, thanks for replying.

First off, we have both the original pathology and surgery reports. We asked for these a long time ago, as early as when the first rounds of chemo were underway. So, we know what we're working with and have for a while. The information we aren't getting is on the severity of this latest recurrance, and honest opinions on treatment options.

Second, why would you not bet your life on the Breuss treatment? I'm curious to hear your opinion, since we are seriously considering embarking on the fast. The theory behind the treatment is sound in our opinion, and several natural-health proponents locally are recommending it. I've also done a lot of web research and found more than a few (independant and unrelated) success stories, one of them here on Cancer Compass. At the very least, we know it can't be quackery-for-profit, since nobody is making money out of the treatment.

I also see you are a survivor of endometrial cancer. What's your story, and how did you overcome?

I will check out the support group as soon as I can.

First, you should know that I am a vegan, so I appreciate the value of diet in health.

I do not agree that the theory behind the Breuss diet is sound.  Your body breaks food down into glucose so your cells can use it; if you ate no food that could be broken down into glucose, you would die.  Cancer cells do not have a fundamentally unique metabolism; they evolve from normal cells.   I do not believe in juicing; I think your body needs the fiber that's left behind when a food is juiced.

MMMT is a very aggressive cancer, and needs aggressive treatment.  Alternative treatments might have merit, but I think they should accompany traditional treatment (which has a proven efficacy), not replace it.

My story is at http://www.eyesontheprize.org/stories/trishm.html .&nbs I have been cancer free since 1997.

Hi Trish.

Yes, we too that alternative therapies should be used in conjunction with conventional treatments, especially when combatting an aggressive type of cancer like ours. I mentioned in my first post that we are actively involved with a naturopath who believes in this technique as much and has recommended we resume the same chemo regiment along with other alternative suppliments. At time of writing, we are set to partake of chemo round 2 of 4 (if the doctors believe it to be still useful, again, another verdict we won't know until just prior to the chemo being administered). Please don't get the impression that we intend to pursue to Breuss therapy on it's own yet -- this was meant to be just an additional attack method. The only reason we would consider pursuing the cancer using this concept alone is if the conventionalists abandon us, which has been a theme that's surfaced multiple times in the last two years.

Right now, among the usual natural remedies we've been taking, we're also using an arabinoxylan compound in capsure form to boost NK cell output, as well as provoking repeated immune system response to the cancer via means of bacterial immunization, a complimentary therapy recommended by our naturopath. It's similar in fashion to the old Coley's therapy, but considerably more effective with no side effects.

Some good news, the pain our mother was experiencing from the cancer recurrance has largely diminished, and for the last two weeks she has not required any painkillers. It's been said that this is an amazing sign of possible recovery and that the chemo is working well.

Also, the results of some CA-125 tests we ordered through our naturopath a few days before the first chemo have returned. At the point when the cancer recurrance was going unchecked, the CA levels were 20, not nearly as good as the 9.3 it had been for a year and a half, but not as severe as I anticipated.

I read your story; it's interesting how passive/irritable your doctors were and the experience is similar to our own. Since you're a survivor with solid beliefs, what would you recommend we do in addition to our current plans?

I am glad that your mother's pain has resolved.

I believe that the CA-125 has some non-specificity; it can be affected by things other than cancer.  Beware of making too much of small changes that are already in the normal range.  I don't know how repeatable this test is; sometimes different assay runs can vary some without clinical meaning,

Continue to be assertive in obtaining the best medical care, and keep researching the newest traditional and alternative treatments.  Dealing with a rare cancer is difficult because most drugs in development will be tested against more common cancers first, both so the drug company can enroll enough trial subjeects, and so it will have a larger market if it is approved.  Some of the drugs appproved recently for other cancers may be active against MMMT, but the trials that might prove/disprove efficacy will probably not be done. If you mother has a recurrence and has exhausted convenional treatment, she may decide to take a chance on an off-label use of one of the newer drugs approved for other cancers.  A doc with experience treating MMMT can usually make an educated guess about which drugs might work,