Binghamton, NY; email@example.com
1947 / Class of '92 / Type: IgA / Using alternative medicine / Updated: 9/05
Pre-myeloma health history
Age 0 - 9 (1947-1956): Lots of bronchitis, tonsillitis as a child, doctors concerned about "pre‑ asthmatic condition"; skin allergy to wool; all the usual childhood illnesses (measles, mumps, chicken pox). All the usual vaccinations. Severe middle ear infection at age 8. Health improved greatly after several weeks at the seashore!
Age 20 (1967): Hay fever begins. Seasonal allergies remain; sensitivity to certain trees and grasses.
Age 25 (1972): Anxiety attacks begin; treatment with Valium; 2 days hospitalization. Condition peaked in mid-seventies, subsided during the eighties. No panic attacks since ca. 1990. In my twenties, also began to develop some arthritis in my hips.
Age 32-42 (1979-1989): Several bouts of severe pain, right side of abdomen; endometriosis diagnosed. Two rounds of surgery (1981 and 1989) to remove scar tissue
Age 43 (1990): Develop incidences of severe eye pain upon awakening; ophthalmologist had no explanation. TMJ also begins at this time. Both continue to date, but are not constant.
Age 44 (1991): Fractured left wrist in auto accident; wore brace for several weeks. Severe strain of left ankle due to fall on icy walk; wore brace for several weeks
Age 45 (1992) -- Diagnosis: Sinus surgery (repair of deviated septum, excision of excess turbinate tissue). Discovery of anemia and subsequent diagnosis of IgA Multiple Myeloma.
Laboratory values at diagnosis were the following:
WBC=3.7; RBC=3.2; HGB=11.1; HCT=33.1; MCV=101.9; MCH=34.6; MCHC=33.9; PLT=333; IGA=1440; Beta 2 Microglobulin=1.5
Bone marrow aspirate showed abnormal, enlarged plasma cells (ca. 27%)
No evidence of urinary monoclonal light chains; skeletal survey showed no evidence of lytic or blast bone process.
Post-diagnosis health history and conventional treatment
From 1992-1997, I undertook no treatment, since the disease seemed to be progressing very slowly. I saw the oncologist every 2 months. Anemia was the only presenting symptom. My IgA fluctuated up and down, but we could see that the “ups” were more considerable than the “downs”.
In 1995 a DEXA scan showed that my bones were in great shape; in fact, they were unusually dense for my age – denser than the control group of 31-yr-olds!
However, in Fall 1997 I experienced a compression fracture of T8 and in December began monthly Aredia infusions, 90mg in 500ml saline over 2 hours. My hemoglobin had also declined steadily and in January 1998 I began Procrit injections. After adding supplemental iron to my diet, I did see an increase in HgB.
Then, in Fall 1998, I fractured my left clavicle. (major pain event!) And – my IgA had risen to 5100.
So, in November 1998 I began biweekly pulses of high-dose Dexamethasone – 40mg per day for 4 days followed by 10 days “off”. I tolerated the Dex well, with the main noticeable side effects being the insomnia, very dry skin, hair turning curly (!) and, interestingly, a psychological state of intense focus and concentration. I continued this therapy, with a few “breaks” for travel, until September 2000 when my oncologist decided that the long-term side effects of the Dex were simply too risky. In spring 2000 my Procrit doses became erratic, since my HMO had decided to only fund them when HgB dipped below 10. I stopped the Procrit altogether in Fall 2000.
In October 2000 I began Thalomid at 50mg and increased to 100mg in February 2001, but going back to 50 mg after several months. We saw an almost immediate improvement in HgB, up to 11.7. From January 2001 to February 2001, IgA dropped 500 points to 2210.
Throughout 2003 my IgA began to rise slowly again, probably because I occasionally took “breaks” from it, allowing the mm cells to “regroup” and organize their resistance. I developed pn in my feet and lower legs. It was not painful, did not interfere with locomotion, but was just bothersome.
In May 2005 we stopped the Thalomid. IgA had risen to over 5000; the pn was beginning to affect my fingers. For a flutist whose greatest delight is making music, that was unacceptable. In May I also developed some a very painful inflammation of the periosteum around clavicles, shoulders and shoulder blades, probably myeloma-related. That was relieved by chiropractic therapies (low-level laser) and homeopathy.
From June to August, we tried the twice weekly infusions of Trisenox with ascorbic acid. Other than giving me an itchy rash and slight queasiness, it only succeeded in stabilizing the IgA - -no further jumps but no decline either. It did, however, succeed ion worsening the anemia. AN HgB count of 6.7 on June 30 led to my first ever blood transfusion (2 units) on July 1. Then in August, pain in my hip areas developed that prompted me to hobble around. X-rays showed a small lesion on the left iliac bone, probably causing more inflammation of the surrounding periosteum tissues. Again, laser and homeopathy is working. But we axed the Trisenox.
As of today, September 15, 2005, I am beginning low-dose cytoxan. So, we’ll see how it goes.
Oh yes, DEXA scans done every two years shows that my bones are still “abnormally” dense and I have actually gained ˝ inch in height!!!! I have continued with the Aredia infusions and have had no ill effects to date. I deliberately did not switch to Zometa, because the Aredia was working, I was tolerating it well and switching to something much more concentrated sounded like a recipe for trouble. Glad I stayed with the Aredia.
Diet & Supplements
In February '95, I began working with a biochemist who specialized in nutrition. I followed a regimen emphasizing complex carbohydrates and specific fresh whole foods (citrus and carrot juices; red cabbage, red peppers, daikon radish, soybeans, strawberries, grapes, asparagus, other cruciferous veg's and also fish on a limited basis); I also took daily doses of Essiac with tinctures of licorice root, red clover and astragalus. Occasionally we "pulsed" other herbs or tablets, e.g. cats claw, bupleurum, polyphenols, isoflavonoids.
By 1998 I had gained ca. 40 lbs on this diet and was craving carbohydrates. My family has a history of Type II diabetes. So – we changed my diet radically to be severely carbohydrate restricted! The biochemist had also done research that indicated that Interleukin-6, a major growth factor for mm, was stimulated by insulin -- so any diet that results in lowered insulin secretion should benefit mm. Also, since elevated blood sugar often develops during steroid therapy, the low carb diet made sense.
In 2000, I changed nutritional advisors to work with someone who specializes in treating cancer, Donald Yance, author of the book Herbal medicine, Healing and Cancer. We are continued the low-carbohydrate diet and, from 2000-2005 I used a variety of supplements, including: AHCC (an extract of mushroom mycelium), Alpha-Lipoic acid, Anthocyanins, Beta-Sitosterol, Bromelain, Calcium Orotate, Campesterol, Catechins, Coenzyme Q10, Folic Acid, Ipriflavone, Iron, Lipoic acid, Magnesium, N-Acetyl-L-Cysteine, Niacin, Potassium, Quercetin, Selenium, Stigmasterol, Turmeric, Vitamin A, Vitamin B-12, Vitamin C, Vitamin E, Vitamin K-1, Zinc, and a number of products that Donnie had formulated. I stopped working with Donnie in March 2005, mainly because I wanted to work with a naturopath here, someone whom I could see face go face. (Donnie is based in Ashland, OR and does phone consultations.
So, as of 2005 I am simply using two Thorne products, Supportive Care and Supportive Care II. I also have added N-Acetyl-Cysteine and a probiotic. In addition, I plan to add Curcumin back in.
And, by the way, after reaching a high of almost 70 lbs over my target weight (according to Weight Watchers ) I am now within 10 lbs of that target. I credit the low-carb diet and also the Arsenic!!
My body responds very well to homeopathic remedies. I have used Hypericum perf. (St John’s Wort) for pain related to the compression fracture and Symphytum off. Right now I am using Ruta grav and Phytolacca and Formica rufa for the hip inflammation and they seem to be helping.
I have found acupuncture to be very helpful in treating the bone discomfort. And I am going to speak to me acupuncturist, who also is trained in Chinese herbal medicine, about hou po, the “honokiol” about which there is much new information.
In July of 2005 I finally had a sleep study done, after several roommates reported that, in addition to snoring, I appeared to stop breathing too. Well, the study revealed that I have “moderate to severe” sleep apnea -- my breathing apparently stops on an average of 17 times an hour! Now I’m thinking: the human immune system engages in its most critical repair during REM sleep. If my sleep has been disturbed for a long time, could that have contributed to the development of mm?? So, I will be getting one of the C-PAP devices to help with maintaining breathing -- and will be very interested in seeing what happens when I start getting a full night of “good” sleep.
It would be difficult to say of any of the above treatments have “helped”, since I have also been doing the conventional treatments as well. However, my oncologist seems to feel that these probably accounted for the “slow” progression of the disease for the first 5 years. He also feels that they have contributed to my tolerance of both the Dex and thalidomide.
It’s been a strange 13 years… My initial oncologist at diagnosis in November '92 recommended an immediate allogeneic bone marrow transplant and predicted that without treatment, I'd be dead in 5 to 7 years! My 4 siblings were all tested -- no matches. Then my HMO refused to even consider BMT as a treatment option and would not authorize a consultation at Arkansas. After engaging a lawyer, they reluctantly agreed to fund a BMT at Upstate Medical Center in Syracuse when the time came. In February '93, I became uncomfortable with the extremely aggressive approach of the first doctor and so switched to my present oncologist.
One major attitude change I made was to try to see my mm as chronic, as something that could be managed. It is common to see cancer as something alien which has invaded us from the outside, like a supergerm, and so we seek to eradicate it, with therapies which may do more harm than good in the long run. Cancer is the body’s own system gone awry and I feel that a gentler approach, trying to understand it and using therapies designed to bring the organism back into balance has worked for me. Incidentally, both the nutritionists and the oncologist feel that keeping the IgA in the 2000 range and the HgB close to normal is acceptable.
I had always been somewhat “anti-drug” and took an occasional analgesic when necessary. Many of the conventional treatments for cancer are so drastic. So, it was natural for me to explore the world of alternative/complementary therapies.
My interest intensified and in 1997 I began to formally study herbalism. I am in the process of completing an intensive course of study developed by Tieraona Low Dog, an herbalist/MD in New Mexico.
Then in 1999 I enrolled in Goddard College’s Health Arts and Sciences program, working toward an MA. I have increasingly become interested in the non-physical aspects of illness and in the difference between healing and curing. In July 2002, I completed an MA thesis, focusing on the recovery of a sense of self and identity as an integral aspect of healing.
I also work with a psychologist and participate in a Zen meditation group. I am also an avid English Country dancer and musician. Music had always been an important part of my life and was something that I had “drifted away from”. Rediscovering it has been a part of reconnecting with my “self”. Music also led me to become involved in a system of healing that uses music, color and movement Tama-Do.(http://www.tama-do.com/). I have completed two levels of training and am now beginning to get in my “practice” sessions required for final certification.
Philosophically, cancer has been a challenge to my own beliefs, best described as vaguely Buddhist (Zen) and Pagan in nature. To the question "Why me?" I had to work hard to accept the answer of "Why not?" I've tried to accept the mm as a part of me that I work *with* and *around*. I am also very conscious of the fact that, in a way, I am privileged to have the luxury of time -- if my disease were acute, my "philosophy of acceptance" mode might just vanish. I am truly humbled by fellow MM'ers and other folks who are coping with much more drastic symptoms and side effects.
Mortality has indeed become very real, but so has my belief in the totality of all being, in reincarnation and the opportunity to learn new lessons "each time around". It is interesting that myeloma is located in the very core (i.e. marrow!) of our beings -- maybe the lesson this time around, for me, at least, is to be true to my inner self and follow my own path.
If you read this….
People often contact me for advice on using alternative therapies in dealing with their own myeloma. I am really not qualified to offer any – I can only say what has worked for me. Of all the cancers, myeloma is probably the most individualized. What works for one may not work for another. I think it is important to read and learn as much as you can and then, working with your oncologist, develop a treatment plan that incorporates the complementary methods that work for you.
For those interested in exploring the world of complementary (I prefer this to the word “alternative”) medicine, I plan to include on this site a list of books that I have found useful. Michael Lerner’s Choices in Healing in an excellent starting point, though. Stay tuned for others….
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