Meridian Patient Feedback Blog

Dr. Chang / Breast Cancer

Posted on: October 12, 2008


5 Responses to "Dr. Chang / Breast Cancer"

I was diagnosed with primary bi-lateral breast cancer in November 1996. I was node negative, and had a bi-lateral mastectomy followed by 8 cycles of CMF. I relapsed in the spring of 1999. Since then I have lived with metastatic breast cancer in my bones. A few scans have indicated minor irregularities in liver or lungs, but it appears those are not neoplastic. I have lesions in multiple ribs and vertebrae, as well as sternum, clavicle, pelvis, etc. In spite of this, I have an excellent quality of life with no pain, no fractures, and no restrictions on activity. Shortly after I learned I was metastatic, I sank into a clinical depression, and was treated by Dr. Roger Granet, a psychiatrist who specializes in cancer patients. It was he who referred me to Dr. Chang when I told him I wanted to pursue every available treatment to control my cancer. My philosophy has been to treat my cancer as a chronic condition, as I know it is incurable. Thanks to Dr. Lowenthal, my “regular” oncologist in New Jersey, to Dr. Chang, and to the dendritic vaccine from Germany, I have done very well.
I feel it essential for cancer patients to be pro-active and to avail themselves of all treatment modalities including radiation, chemotherapy, immunotherapy, targeted biological therapies, “nutraceuticals”, and off label use of drugs if relevant to their type of cancer. My current regimen of treatments is long so I will not list it, but I am on low-dose Xeloda, i.v. Zometa every 3 months, and several FDA approved drugs used off label for their possible efficacy in controlling my type of breast cancer. I also take many vitamins and food supplements.
This cocktail approach has been successful. As Dr. Lowenthal says to me, “Helen, if you did not know you had cancer, you would not know you had cancer.” My eight years of clinically asymptomatic, yet incurable cancer is proof to my husband and myself that the multi-pronged treatment approach can work to maintain stability for long periods.
I am posting my history so that others who are just starting on this journey will know what is possible if one attacks cancer on many fronts. I wish I could reach Elizabeth Edwards and tell her my story. It is quite possible Elizabeth will not only live long enough to see her young children graduate from college, but she may outlive her husband. None of us knows what will happen tomorrow, but all of us with metastatic cancer need to do everything we can today to control our disease.
I want to wish all who read this the best success in their personal war against cancer, and feel free to email me directly [call or email Dr. Chang’s office for my contact info] or to post any questions you have in this forum.
Helen Slonaker

“Extremely Happy” [ Excerpted from Annie Appleseed Project site ]

I have relied on Raymond Chang for “out of the box” thinking about my breast cancer treatment since I was diagnosed early in 2004.

My experience with him could not be more different than that of “J,” who wrote you in June 2004.

More than any other practitioner I’ve worked with, he allows my agenda–my concerns, my inquiries–to drive the office visit. Most visits last 30 minutes, but several have extended to almost an hour. At no time have I felt rushed or intimidated.

Dr. Chang does access the Internet a great deal during my sessions with him–because he is printing out the studies that influence his recommendations. He is always concerned that I have sufficient information to make up my own mind. I find that very respectful.

In regard to the supplements he makes available, I am very grateful to easily access formulations that are customized for breast cancer patients–for example, multi-vitamins without copper and selenium. His prices on his PSK formulation (tricolor mushroom extract) are lower than Wilners by a great deal, which is almost unheard of.

(If you live in New York City and have anything to do with alternative or complementary medicine, you know that no one beats Wilners on price and selection.)

I am extremely happy with the care I’ve received from Dr. Chang.

I have recently been diagnosed with lobular carcinoma of the breast, after discovering a 5 centimeter tumor under my arm 6 weeks ago. The origin is not clear–there is nothing showing up in the breasts, and I have at least one other tumor in a vertebra and a suspicious spot near an adrenal gland.

This is all very new to me, but I am hopefully passed the first horror and myriad of tests and decisions. Now it is about healing.

I came to Dr. Chang because I want to heal powerfully and with the minimum damage to my body and my life. I know I have everything to do with that, and I am looking for the most thoughtful and powerful partners available. I see that Dr. Chang has immense knowledge and thoughtfulness, and is aware of more than the disease he is treating. I don’t know how to think about cancer yet—it is still new and overwhelming, but I feel very good about Dr. Chang. I trust him. That makes all the difference.

So far I have completely changed my eating habits and am paying more attention to my body than ever before in my life. I have started to do guided visualizations, which are helpful in relaxing and tuning into the body. We are just starting treatments of different kinds. It is good to hear from Helen, above, that one can live a long time with this approach.

When I’m not scared I must say this is a profound experience–it has already changed me in many ways. I imagine it does with everyone. I think one of the best things for me is that others are in the battle with me, and provide so much energy and healing intentions. And also, that I have a say in the matter—I made a promise to heal, and I am taking my word seriously. That moved me from being a victim to being clear and powerful.
I can offer that thinking to others.

By the end of 2007 my mom had finished undergoing treatment for Cancer of Unknown Primary (CUP — Assumed Breast Cancer) and Thyroid Cancer. She had Chemotherapy at Nevada Cancer Institute and surgery to remove her Thyroid at MD Anderson. She remained cancer free until March 2011 when a routine PET/CT scan revealed a 1.5cm spherical tumor in the left side of her brain near the Broca area.

We immediately went to UCLA as we had heard it was one of the top Neurosurgery hospitals in the country. They performed Stereotactic Radiosurgery on the known lesion, which did work in reducing the tumor size. However, a month later 2 more tumors were found in her internal auditory canals and a couple more lesions in her spine. We urgently went back UCLA to see how we could go about treating the new developments.

We waited upon UCLA for over a week for them decide on a diagnosis and treatment plan. After waiting and waiting they came back to us with a paragraph email stating that she had Neoplastic Meningitis and that the treatment is Whole Brain Radiation and Intrathecal Depocyte (via Ommaya Reservoir or lumbar injections) and that we should go back to Nevada for these treatments. No follow up meeting, no other details were given, such as the success rates, prognosis or other treatment options. Needless to say the entire experience with UCLA has been a dreadful one, numerous unreturned phone calls and emails, incompetence at opening simple MRI Dicom files and much more.

The prognosis for Neoplastic Meningitis is dismal and the literature suggests a form of Intrathecal Chemotherapy even though it is stated in the literature not to be curative and only palliative.

Never have I held so much disgust with the established medical industry because of the red tape, disorganization and lack of individualized care. I’d been reading up on other cancer treatments but no one from UCLA or NVCI was willing to go down those paths as they are out of the so called “Standard of Care”. But if the “Standard of Care” prognosis is only 3-6 months than obviously it doesn’t work very well, does it? A great quote comes to mind whenever I hear a doctor use the term “Standard of Care”.

It’s a quote by Ayn Rand when defending her philosophy as outside of the “Mainstream” but I believe it is applicable…

“Anyone who has new or valuable ideas to offer stands outside the intellectual status quo. But the status quo is not a stream, let alone a “mainstream.” It is a stagnant swamp. It is the innovators who carry mankind forward.”

Luckily, for my mom and myself we found Dr. Raymond Chang. We are making our 3rd trip out to see him and have already begun on many of the treatments other doctors wouldn’t pursue.

He has been great in coming up with a set of medications, supplements and nutrition plan that is backed by evidence and isn’t so detrimental to her quality of life. She is currently taking low dose Temodar, Phenylbuterate and Gammadelta therapy(once a month)… (along with many anti-cancer supplements)

Dr. Chang is obviously very knowledgeable about many different forms of cancer treatments. For example, I brought up the option of tackling this disease by inhibiting angiogenesis (Google it!). Most Oncologists have likely heard of this approach but aren’t privy on the details of how it works. Dr. Chang however knew exactly what I was talking about, the Michigan University studies that supported it and was familiar with how to use Tetrathiomolybdate to reduce copper levels and inhibit angiogenesis. (We are now beginning to pursue this path).

I have spent a lot of time conversing with Dr. Chang in person, over the phone and via email. He has always been informative and responsive; always directing me towards research papers that support the path he believes we should pursue.

Dr. Chang is exactly what one should want in a doctor. Someone who is knowledgeable and lives the subject material, capable of explaining the benefits and risks of different treatment options and most importantly willing to listen to the patient’s desires and needs. Without Dr. Chang we obviously wouldn’t have his expert guidance but we also wouldn’t be able to acquire most of the medications to pursue any of these alternative treatments.

I feel lucky we found someone so knowledgeable, helpful and passionate in the field of cancer treatment. I will post updates with further developments.

I was introduced to Dr. Chang when I was a breast cancer patient at St. Vincent’s Comprehensive Cancer Center (now Beth Israel) in New York, in 2001 by my surgeon, Dr. Deborah Axelrod. After my lumpectomy and radiation, she encouraged me to attend a lecture by Dr. Chang, and I was deeply impressed by what seemed to be his common-sense approach to integrating Eastern and Western techniques to deal with cancer and post-cancer. Treating each patient in terms of their individual make-up, and using the principle of strengthening the immune system was long part of Dr. Chang’s medical practice. It was a great relief to find a Western trained cancer specialist who was not afraid to incorporate other methods of healing, as so many Western doctors are. (It is very satisfying to see that the ‘cancer establishment’ has slowly come around to incorporating this kind of wisdom in today’s treatments now a decade later.)

The fact that he is open to the whole universe of medicine(s), that he treats yours as a unique person which means paying attention to all of the different variables that can effect your health, that there is always something at the heart of his treatment that MAKES SENSE and gives you a feeling that your doctor and you are in this together are the reasons I have continued to see him regularly for 12 years. Nothing is set in stone, so you grow and change with new information and new discoveries. I have absolute confidence in his analyses and recommendations which he encourages me to share with the rest of the cancer ‘team’ I work with.

As my husband has stated elsewhere, we both see Dr. Chang as a ‘primary care physician’ in spite of his specialitie(s). I often consult him about other medical issues (liver, sugar, cholesterol, arthritis etc) and rely on his sane, no-nonsense approach. He manages
to be knowledgeable, to-the-point, but also ever-curious, concerned and caring at all times.

I encourage everyone I know, no matter what their experience with cancer might be, to have a consultation with Dr. Chang.

Susan Bergholz

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