Dr. Chang / Other Cancers
Posted on: October 12, 2008
- In: General
- 13 Comments
There are many cancers that are unusual or uncommon for which there is not enough research simply because their rarity translates to a small market for pharma and researchers alike. Many such patients are frustrated by their diagnois and attempt to seek out a niche specialist for their rare condition only to learn that there are few proven treatment options or available trials simple because of the disease’s rarity. We have treated quite a number of such cases of which there are fewer than a dozen reported in the literature; and would first point out that a cancer is still a cancer, rare or otherwise, and a rare cancer shares basic common cellular pathways with other more common cancers. If one doesn’t focus on their rarity but their commonality with other malignancies, they can be managed with repurposed treatments (developed for other conditions but re-tooled for newer indications). Indeed, besides narrowly focused “targeted” therapies, there are also more general treatments (eg the gammadelta T cell treatment or Dendritic vaccines) that target multiple cancer pathways and have been deployed against a broad spectrum of cancers.
17 year old California patient Brittany W. with a rare sarcoma and Dr. Chang in his office (See Apr 2013 post by family below)
13 Responses to "Dr. Chang / Other Cancers"
My current 4 year old daughter was dx with an Anaplastic Ependymoma when she was 21 months. Surgery followed by 6 months of high dose chemo w/ Stem Cell rescue resulted with a complete response to treatment, however, 6 months later the cancer returned. Next treatment, radiation to entire brain and spine. The end result was unclear since the followup MRI appeared as if it grew through radiation. That’s when we enlisted the help of Dr. Chang. His knowledge and experience made the difference in my daughter’s quality of life and since working with Dr. Chang, her cancer has been stable…over a year and half of good scans! Also, his efficient and caring staff always brings on a smile to whomever walks in…especially my daughter.
If you are looking under pediatric cancer on this site, my heart goes out to you. But mine is a message of hope with a (so far) happy ending.
My son Andrew was diagnosed with Ewing’s Sarcoma just before his sixth birthday. When we met Dr. Chang, my son was twelve and had just finished chemo for his second recurrence. He has had over 40 rounds of chemo, 12 surgeries, including removal of the lower lobe of his lung, and several rounds of radiation. He has the bone of a 40 year-old woman in his arm.
I am a pediatrician. I went to Dr. Chang with minimal expectations. I thought he would give my son a vitamin or an herb. Grape seed extract or garlic. Dr. Chang knew what I had in mind, but he gave us so much more. He realized that Andrew is at great risk for a recurrence. Yet, as a currently cancer-free child, and an active, happy one at that, he said that he must “first do no harm.” He explained the theories behind cancer therapies and recommended an off-label use of an apoptotic agent, one that is used for children with rare metabolic disorders, but is being researched for cancer use. My son has been taking the medicine for about 15 months now. He has no side effects. We are so happy to be doing something proactive to keep him healthy. He turned 13 this year and had his Bar Mitzvah. We never thought we would see that day. He just had a good scan. It is a mother’s hope that 5 years from now I will send my son to college wondering if Dr. Chang’s medicine really made the difference.
I have recommended Dr. Chang to a family of a young woman with a recurrence. As a doctor, I refer to other doctors every day. I feel confident that the patients I send to Dr. Chang will receive a thorough, educated and innovative opinion.
Good Luck!
I last wrote in April 2007 and now in May 2008, I think an update is warranted. Andrew is strong and happy. Since I last wrote he had his first date and his first girlfriend. He had his Bar Mitzvah in December and did great. His chest CT, yesterday, was clean of any cancer. He is still on his apoptotic agent every day. He is captain of a Relay for Life team and we are planning a family cruise. Life is good.
It is now January 2009. I’ve had prostate cancer for at least 4 years. I was diagnosed with it in early 2005, but that was after foolishly ignoring some high-ish PSA numbers, so that’s why I say “at least” 4 years. I probably had it before 2005.
During the first year, I had lost about 30 pounds or so by exercising more and cutting out my typical fatty breakfast of bacon and eggs and cheese and a roll and a muffin and coffee with whole milk. No kidding. Every day! I also saw during that first year an acupuncturist friend who himself had had cancer 20 years prior (and I continue with him regularly) and I met a co-worker who was bravely working on breast cancer in non-traditional ways.
I was referred to Dr. Chang almost a year after my diagnosis by a rolfing therapist named Beth Francese. Dr. Chang added some vitamins and supplements, ordered regular blood tests, explained how sugar creates insulin which is (simplistically) bad for a cancer patient, and how low cholesterol helps keep testosterone low, which is (again, simplistically) good for a prostate cancer patient, and how a low fat diet helps fight cancer. Perhaps most importantly, he gave me the confidence to live with prostate cancer and not submit, because of fear, to either the operation or the radiation. Dr. Chang also made sure I knew that the safest way to go (using the metaphor, to get the best insurance policy) was to have the cancer surgically removed. It was almost the same speech I got from my traditional urologist! I was not interested in that way. I feared its side effects (impotence, incontinence) and perhaps more, I feared losing the prostate’s contribution to my body’s health, specifically to my human creativity. And for many years, I was convinced that the human body could do much more for itself than traditional American medicine believed.
Dr. Chang always went to the internet to instantaneously prove a point, or to show the details of some specific research, and because of that I followed up by reading some of the low-fat diet studies. I was very impressed. I probably also read them because giving up fat is what I find most difficult. Giving up sugar was relatively easy. Giving up high-cholesterol-causing foods, like the bacon and cheese, was relatively easy. Keeping strictly on the diet for a few months or even a year after the diagnosis was possible, but the energy to persevere in what I perceived as an austere lifestyle waned, and the flavor of cream cheese is still hard to give up. So I struggle.
For the almost three years that I have seen Dr. Chang, my PSA number has risen and fallen between 7 and 10. Just recently it was uncomfortably approaching 10, so we tried a drug that is used for candida for a few months, which caused a small lowering to the low 9’s, followed by a rise to the high 9’s. So we tried a drug that is used to reduce the size of an enlarged prostate (a condition that I don’t have), and that lowered my number to 5! I was very happy with that, but now after two months on that drug, I am more conscious of the side effects, which are reduced sex drive and reduced amount of sperm. Perhaps one could consider it a small price to pay for relief from a high PSA number, but I am looking forward to beginning anew a drug-free, strict diet approach, to see if I can manage it.
Dr. Chang’s information helped me understand the risks (of high fat diet, sugar, etc.), but (and I’m feeling a loss of words) he seemed to understand what I required to stay knowledgeable and confident as I dealt with my own fear, my own lack of knowledge, and several well meaning friends who were guided by their own “take the safe route” fears.
(Patient is alive and well with stable disease Apr 2021)
My son came down with cancer in 2005. Metatatic testicular cancer to the spinal column. We tried everything at a major cancer center but they had no way to stop it. We came to Dr. Chang to see if he could help. He put my son on medicines which I believe were slowing down the cancer if not stopping it. However, my son’s cancer was so advanced and with such terrible and permanent collateral damage that I think he just chose to give up and stopped taking meds. He passed away.
In August 2008, I found a lump in my neck and went for treatment. They diagnosed me in Nov. with adenocarcinoma of the submadibular salivary gland. I have had a neck dissection and now am in chemo and radiation.
I learned (working with my son and Dr. Chang) that one must start on a “parallel” program while working with the oncologists at a cancer center. I also learned that the program must be started almost as soon as the diagnosis is received. With cancer, time is of the essence; therefore, I have started to work with Dr. Chang on two treatments: 1) to help me with the chemo and radiation and 2) to try to prevent the cancer from reappearing( this cancer has a high tendency to reappear).
We have discussed a number of possibilities which we could implement after radiation is complete. Dr. Chang always does a thorough job of researching the science behind the various possibilities and in my son’s case I believe that he came up with excellent and appropriate therapies.
I highly recommend him and would be happy to talk with anyone re my experience or my son’s experience.
My wife was diagnosed with Stage III localized synovial sarcoma in early 2008. She underwent radiation and chemo. For many months after chemo ended, she is still suffering from low white counts.
The moment she was diagnosed, I stopped working and dedicated myself full time to studying her cancer, conventional treatments as well as alternative treatments. I also consulted with naturopathic doctors (NDs), open minded MDs, nutritionists – anything and anyone to give my wife any possible advantage – because her cancer is known to be an aggressive one and her odds even after all the conventional treatments aren’t spectacular.
The alternative resources I’ve looked into include journalists like Ralph Moss, the standard alternative gurus (like Andrew Weil), along with some newer personalities like Dr. Mercola (who often have vested interest in selling supplements and products).
What I’ve found is that there tends to be general consensus on certain things like supplementing with Vitamin D3, Omega 3 oils, curcumin etc. However, each resource will have his or her own ideas on what might be helpful. The problem is when it comes to alternative cancer treatments, there is no such thing as absolute truth (otherwise, it would probably have gone on to be accepted as mainstream “conventional” knowledge).
After 16 months of full time research and 10s of thousands of dollars in out of pocket doctors fees, tests, supplements, I’ve learned that it pays to be very picky on who you work with. Some of the alternative doctors out there were simply not evidenced based enough for me and my wife (I am an experienced software engineer, my wife is a postdoctoral researcher in biology). Others had conflict of interests in that they stand to make a lot of money from supplements or procedures they tout. Still others were well meaning and knowledgeable, but didn’t have enough experience in the field of oncology.
During these 16 months, a lot of my time was spent scouring the internet, pubmed and discussion boards for information on supplements that may give my wife an advantage – however small. I would file away any lead I came across and then research it, collecting as much evidence for or against it. I would also research side effects and negative interactions with other supplements or drugs. I’m sure some of you have been doing this and have found that it’s very confusing. There’ll be MDs supporting taking this supplement during chemo for enhanced efficacy or protective effect – and then there’ll be MDs claiming it reduces efficacy of chemo. Ultimately, I compiled as much for/against data as possible and made the best decision as I could with my wife. If I had started working with Dr. Chang earlier, his evidenced based approach would have undoubtedly saved me a lot of time, trouble and stress trying to figure out everything myself.
We were introduced to Dr. Chang when I began looking into LDN (low dose naltrexone). We were all ready to go on it based on the anecdotal evidenced from the LDN website as well as the forums. Through that process, I was in touch with Moshe Rogosnitzsky of adjuvantmed.com. Moshe highly recommended Dr. Chang. After initiating our patient relationship with Dr. Chang we decided to go with other agents that have more evidence for sarcomas.
Our interaction with Dr. Chang has included phone conversations, skype and emails. Dr. Chang is very responsive and focused. Discussions with him are to the point and productive, despite the fact that we’re in California and have never stepped foot in his office. Dr. Chang is efficient and resourceful in making good use of communication technology. He knows his stuff, is intelligent, cares about his patients well being, and isn’t afraid to think out of the box to employ unconventional agents that may benefit his patients (like prescribing non-approved drugs for compassionate use for example). Coupled with his evidenced based approach and years of experience in the business, you’d be hard pressed to find another resource of such high quality.
Ultimately, beating cancer is a journey in which there are many open ended questions and few absolute solutions. If you listen to a single doctor or oncologist, you’re going to be restricted to the philosophy, experience and training of that person. When it comes to my wife’s survival, I sure am not going to settle for that. My belief is to find a few good people to work with. Each will have their own approach. You can take their ideas and perspectives and come to a decision that you feel comfortable with. If you believe in the same approach, I strongly recommend Dr. Chang as a must-have resource. Your money and time won’t be wasted. He’ll give you good leads to think about (along with the evidence) and maybe save you from wasting time and money on other options.
(Update: Patient is alive and well Aug 2021 and actually published a book on her cancer journey 5 years ago – Curing Cancer with Immunotherapy – available on Amazon etc)
Brittany’s Story of Hope
Our daughter has had an amazing journey battling Mastocytosis Sarcoma, an extremely rare cancer. We are thankful we found Dr.Chang along this very challenging road. It is amazing how we were directed to him and it took many steps to get to NYC to see him. He is brilliant, humble, and willing to look at all viable options. He is sure, methodical, and clear as to his plan. We are grateful for the knowledge he shared with us and for his sincere care for our daughter, Brittany. He has always put Brittany’s health first and foremost, and intends to keep her immune system strong. His primary concern is for her well-being, and for the least amount of side effects. We are grateful for Dr. Chang’s expertise and his willingness to go outside of traditional medicine to find answers. We have been seeing Dr. him since November 2011.
We were the “normal” family of five with both parents in teaching and coaching for our lifetime careers. Brittany is our middle child. Brittany was diagnosed in fall 2008 at age 12. She was having recurring headaches for months which we believed was due to an ear infection. Brittany was referred to ENT who eventually requested a CT. To our dismay, a tumor was found growing deep inside her ear. Brittany had a biopsy within a week and she was diagnosed with Histiocytosis, Eosinophilic Granuloma, a very rare condition.
We were thrown into this new life abruptly. Within the first 6 months, the prescribed chemotherapy which had no effect on the tumor and it grew. By spring 2009, Brittany needed surgery to de-bulk the tumor. She had surgery and then we were at a standstill as we considered what next. We looked to a leading Pediatric Oncologist at Johns Hopkins for a second opinion, which after studying her tissue stains for several months changed Brittany’s diagnosis to Histiolytic Myeloid Neoplasm. We continued down a chemotherapy path for several months that did not solve anything. Brittany had an emergent surgery by fall 2009 because the tumor had doubled and was pressing on her brainstem. By 2010, the disease spread to her spine, eventually to her pelvis, and femurs.
Over the course of four years, Brittany has endured more than 10 craniotomies, several rounds of radiation, up to 13 chemotherapies, low counts, infections, many long hospital stays, countless MRI’s, and 3 months of stem cell collections. Brittany’s pathology, blood work, and tissue have been sent to many doctors across the country. We had consultations with Texas Children’s, City of Hope Los Angeles, Stanford, Harvard, UCSD, Philadelphia and others. We considered the chemotherapy options that they offered, however nothing helped Brittany’s tumors other than two very temporary responses. We tried twice to get connected with St. Jude’s and they did not have options for Brittany nor interest in her case. We began researching any possible leads to doctors by looking at case studies and disease information online. We pursued doctors via email across the U.S. and abroad trying to find any doctor who was familiar with a case like Brittany’s or who could offer hope. More often than not, the doctors were gracious but said they could not help, or that they were not familiar with any cases similar to hers. It meant that we had no options, which was something we were not willing to accept.
By spring 2011, we were contemplating the possibilities of a BMT (Bone Marrow Transplant) believing that it might be one of our only options. We had her siblings tested, but we were definitely uncomfortable with the benefits versus risks. We decided to have a consultation with City of Hope, Los Angeles in regard to the BMT, however, the doctor suggested that Brittany’s disease might be Mastocytosis. That was the first time we had ever heard of Mastocytosis, a completely new diagnosis after three and a half years!
At that point, we had exhausted the majority of options that traditional medicine could offer. Chemotherapy and radiation alone had no positive nor lasting effects. We had recently lost a sister-in-law age 39 to Breast Cancer and a brother-in- law to Lymphoma both who had been treated solely with conventional therapies. This was all devastating to our family.
Then, we were encouraged by Brittany’s uncle to consider Alternative Medicine options. We had a lot to learn and had several phone consultations with doctors. We were eventually referred to Ralph Moss, a valuable resource about Alternative Cancer treatment doctors and treatment centers in the U.S. and across the world. Ralph Moss told us that Dr. Chang was a bright, innovative doctor and particularly specialized in rare diseases. We began scouring the internet to see what we could learn about him. The fact was that Dr. Chang not only worked with rare cases, but also with those with late stage cancers. We found a message boards with patients who spoke very highly of him and what he was doing on their behalf. We then contacted Dr. Chang to gain an understanding of what our options were and he graciously responded to everything we asked, and he gave us hope even before we ever met him in New York. We had our first meeting in November 2011. He explained the medicines he would try and why. He would strengthen Brittany’s immune system and attack the tumors by using a multiple medicine approach. Dr. Chang offered straightforward advice. He was open to dialogue, and did not act as though he was the only one with answers. He emphasized decisions based on research, and case studies. It is evident that Dr. Chang has been ahead of his time, a forerunner for decades.
This past fall 2012 on the verge of her 17th birthday, Brittany faced three serious life-saving craniotomy surgeries. We made an incredibly important decision to have Brittany’s tissue sensitivity tested with Dr. Nagourney in Long Beach, CA. When we discussed this with our oncologist, we were told it might be too difficult to get a viable piece of tissue, and it was conveyed that there was no guarantees for a result. Instead of accepting doubts about this testing, we boldly went forward and conveyed our intention to the Neurosurgeon. Despite her reservations, our oncologist coordinated getting live tissue to Dr. Nagourney immediately following surgery. It was worth it all. After the tissue was tested, we received a list of potential therapies. We consulted Dr. Chang and he once again expressed the goal to keep Brittany’s immune system strong, therefore we chose one of the alternative options, a new FDA approved targeted drug, not chemotherapy. We have continued Dr. Chang’s treatment plan addition to this new option and we have seen remarkable effects!
Brittany’s two recent MRI’s in January and March 2013 show NO residual tumor near her brain and the remaining tumors in the back right side of her head have reduced by 30 percent since January. The tumors in her spine are stable and tumors in her pelvis have shown “marked improvement” and have all reduced in size. We have never received news like this in more than four years. We continue this fight with hope.
Brittany started to attend high school full-time in January 2013 as a junior. She is in the school choir, and hopes to play volleyball and basketball her senior year. Her life is a miracle, and we are truly thankful to God every day. Brittany has stayed focused on her dreams while going through all of her trials, countless surgeries and hospital stays. We are grateful to family and friends who have supported us financially, and who have faithfully prayed for Brittany throughout these challenging years. Brittany is thinking she would like to be a nurse someday either in surgery or Hematology-Oncology.
Thank you Dr. Chang. We thank God that we were directed to you and you were willing to give us HOPE and a plan. We will never forget what you have done for our daughter.
With great respect and gratitude,
Brittany’s family
My wife, who had breast cancer, first encountered Dr. Chang 12 years ago. We both were impressed with his approach to post cancer preventative therapy. This unique combination of prescription drugs, vitamins, and Chinese herbs represented in our view an approach which seemed to be the “best of all worlds”. In addition, the focus on building up one’s immune system to fight the onset of cancer seemed eminently sensible.
My wife has been seeing him ever since, while xix years ago after I was diagnosed with tongue cancer (fifteen years after being treated for prostate cancer), I too began seeing him. I’ve been pleased with his availability and responsiveness. I am even more pleased that the prescribed combination of therapies is tailored specifically to each individual (mine is substantially different from my wife’s), monitored regularly and modified as needed with each visit.
In a significant way, I consider Dr. Chang my primary care physician as the discussion of my condition each visit often involves other aspect of my health not directly connected to my cancer treatment.
I have been wholeheartedly recommending him to anyone and everyone recovering from cancer and those anxious to avoid it.
Bert Snyder
Alternative Treatment for my Sarcoma
Passed my 9th year monitoring a potentially (lung) metastatic sarcoma this May, 2016. For the first several years, joy followed when good test results showed, doubts and frustrations followed when questionable results came up. Sarcoma is known for poor survival once metastasis sets in. Should I just wait for it to pop up again? I am sure most cancer patients have this nagging thought. What could I do? Through cancer patient discussion groups over the Internet, Dr. Chang’s alternative treatments came up. He is in New York and I am in Houston. We made connection and I flew to New York and started with Dr. Chang in early 2010.
He reviewed my situation and ordered scans to check the progress if any of my cancer. No detectable nodule. A reduced treatment plan was suggested to me as preventive measure. He was patient and explained the treatment in detail and gave me a lot of references. It was multi-modal cocktail approach. Very sensible to me. Antiangiogenesis, Epigenetic drug, immunotherapy plus quite a few supplements. He also recommend modification of the diet to reduce stimulants that could trigger cells towards cancerous. They all added up to 50+ pills a day!
I stuck with them but Dr. Chang reduce and eliminated the treatment as my condition remained stable and showed improvements in the following years. ;-} I don’t visit New York City anymore and miss the city and the friends there but saved me money. Hopefully, in another year, I can be on even simpler treatment plan. A cancer patient can never take health for granted. I have Dr. Chang to thank for the continuing journey to stay healthy and enjoying life.
I am 78 and I don’t mind living another ten, twenty years! 😉
By the way, Mr. Fan is alive and well, without recurrence (as of Aug 2021) – RC
We are so happy to hear this about the sarcoma patient. You are in great hands, so fortunate you found Dr. Chang!
At age 82 in this Covid-19 pandemic, my [Covid] risk is high and with Dr. Chang’s help, I have been on supplements to cut down my vulnerability since 3 months ago. Hope to ride out this “storm” and enjoy more healthy years.
Dr. Raymond Chang's Patient Feedbacks 
1 | Anne
October 12, 2008 at 11:23 pm
My husband and I made the long trip in the snow and ice from Maryland to New York to meet with Dr. Chang this week. It was well worth the effort. My husband, age 51, has stage IV bladder cancer in his lymph nodes only. He never smoked or drank or had other risk factors for this aggressive cancer. He had six months of chemo which stopped working in December of 2006. We had been told without treatment he would likely die in 6-12 months. We have two sons and a terrific marriage so I am not one to give up easily. I have read literally thousands of pages of research, books on alternative medecine and natural treatments, seen at least six oncologists, and two naturopaths. We have traveled to New York twice, Chicago once and were contemplating going to a clinic in the Bahamas. When we were almost ready to give in to more chemo as there seemed no other “proven” choice, I prayed hard and searched again. Prayers and well wishes from friends and loved ones have sustained us for many months of this battle. I believed if I searched long and hard there had to be more choices than the poison of more chemo. Then through an internet search, I found Dr. Chang.
My husband stands 6 ft 6 ” tall and is strong in character as well as size and it was heartbreaking to see what chemo did to strength, mind, and stamina. He has worked as a school administrator and science teacher for almost thirty years. While Dr. Chang made no guarantees he quickly informed us of the viable options that have some real research behind then. He was able to advise us on supplements and put things in plain language we could understand. We loved his analagies as well, they really helped us grasp the concepts involved. We have decided to pursue several of the treatments he recommended in hopes that something will be effective. We are looking forward to the adventure of working with Dr. Chang, traveling to Germany, and hopefully helping to make history in the war against cancer. Thank you Dr. Chang for being willing to think out of the box and go to the “ends of the earth” to help those of us who are in this battle.