Orthodox treament: good stories

Lecia Gurney's continuing story
Valerie's story
Brain cancer survivor
Liver treatment

Lecia Gurney's Continuing Story

Lecia sent me this story as an example showing that orthodox treatments do work.

In March of 1995 I noticed a lump on the right side of my neck. My GP said it was 1% chance that this was malignant. I later found out this was really 80% chance. I was diagnosed with nasopharynx cancer stage 4 in 1995. Went through a radical neck dissection, and then seven weeks of radiation. Today I have a dry mouth because of this treatment. Followed was three sessions of Cisplatin and 5-FU. The first treatment of 5-FU put me back in the hospital with a very very low blood count. My hearing has been drastically affected by the cisplatin. I was then monitored on a frequent schedule till October of 1996 when it showed up in my lungs.

I had a choice of Chemotherapy or Surgery. I chose surgery since chemo was very hard on me. Was told neither one was a cure. This would just buy me time. After the lung surgery I became a vegetarian and name a supplement I've tried it. This is what I did for the next six months. I truly believe the alternative methods do work for some people. In my case they kept me healthy but didn't touch the cancer.

In June of 1997 I was to the point I was on oxygen. I then went on Taxol. Remarkable improvement. I was still working at this point. Life was good then the Taxol slowly stopped working.

November of 1998 the cancer had spread to my brain. This was operable and four weeks of radiation. During this time my lungs were getting worse to the point I went on oxygen again. The oxygen really didn't help me much. My lungs were really in bad shape.

My oncologist tried three other chemos that did not work. Then we started on Xeloda. My chest x-rays showed a 80% improvement. I am still on the Xeloda and feeling wonderful. I have been able to tolerate this chemo very well.

I wonder why I have survived this. The only explanation I have is God is using me as a glimmer of HOPE to others.

NEVER GIVE UP. THERE IS ALWAYS HOPE

Lecia Gurnsey - Minnesota USA

Valerie's story

I had stage 1 breast cancer in June 1996. I had a mastectomy and lymph node clearance followed by 6 months chemotherapy, intravenous Methotrexate, Flurouacil, Cyclophosphamide. These drugs caused severe dehydration due to ulceration of the mouth, throat and gullet plus thrush and fevers. These were treated in hospital with intravenous antibiotics, anti fungal drugs and morphine to relieve pain. The treatment caused hair loss, several admissions to hospital in a serious condition, as above, plus weight loss of 6 kilos. I am normally 52 kilos , 1.65m tall. I was advised to eat Ginger, and drink ginger beer before each treatment by a health shop, plus wear an acupressure wrist band for 48 hours afterwards . This was to reduce nausea, and they seemed successful. It is now 19 months since completing the chemotherapy, (as of August 1998) I am fit and well with no recurrence of the disease.

Re the acupressure wrist bands, they are made in NZ the company is

Pan Pacific Ltd
PO BOX 353
Warkworth NZ

the cost was about $NZ 15. I saw pages of research so if you write to them I am sure they will send you the research. I was never prepared to try a treatment without them on, I felt they were doing a good job.

I had an excellent oncologist who inspired me to be really positive. I felt anxious about the chemotherapy and certainly most unwell during it but I was convinced it was killing off any cancer cells that had escaped during surgery. I would have it again if need be as you need to feel you are fighting it with force.

I was working during my treatment and had a lot of support from workmates.

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Brain Cancer Survivor

My ex-husband, Joe, is a long-term survivor of primary central nervous system lymphoma. This is a deadly brain tumor with only a 2-3% five year survival after standard treatment. It has been nearly 14 years since his diagnosis and Joe has been off all treatment for over 2 years now. He is also well and fully functional. Joe is a cpa-lawyer who specializes in the valuation of pensions and businesses for divorce proceedings. He spends much of his time being grilled as an expert witness in court proceedings and was recently listed in the "100 Best Lawyers in America" book. Except for some mild forgetfulness, his intellectual abilities appear to be unscathed. Joe is also physically active, jogging several times a week and playing racquetball with our two sons. But, it was a long journey from the diagnosis to his current condition.

In September of 1984, a CAT scan revealed a 3cm mass in Joe's third ventricle. The neurosurgeons at our local community hospital informed us that this was an inoperable location and that, at the age of 37, Joe should get his affairs in order. After a night of hysteria, I pulled myself together and decided to become Joe's advocate. No one was making any attempt to refer us and I realized I would have to do it myself. If the worst did happen, I wanted to be able to look our two young sons in the eye and tell them that I had done everything I could to save their father. My efforts would lead to two new treatments that were unavailable in our home state of Michigan.

I sent out a call for help to everyone we knew and, fortunately, two of our friends were related to an orthopedic surgeon at the Mayo Clinic. This surgeon checked with the neurosurgery department and found out that a neurosurgeon new to Mayo, Dr. Patrick Kelly, specialized in deep brain tumors. Dr. Kelly was awaiting my call. Over the phone, he described his technique, called computer-assisted sterotactic laser surgery, and I was blown away. Dr. Kelly's technique uses a computer-guided laser beam to vaporize deep tumors layer by layer. It was more precise and caused less damage(and swelling) to surrounding normal brain tissue than standard surgery. Four hours later Joe and I were on a plane to Minnesota.

The long surgery was highly successful- over 99% of the tumor was gone- with no brain damage. Even Dr. Kelly called it a miracle. But, the biopsy was unable to establish a diagnosis. Even after sending the slides to the best neuropathologists around the country, there was no consensus. We decided to abide by the majority opinion, which was that of a low-grade astrocytoma. After much agonizing and research in the medical library, we decided that Joe should have 5000 rads of radiation to the tumor and the immediate surrounding area. This was done at a major medical center close to home.

One month after the radiation was finished, Joe again began to have headaches. A CAT scan revealed a second tumor in a completely different area of the brain. We knew it had to be highly malignant to recur so quickly. Back at Mayo, Dr. Kelly did a stereotactic biopsy which confirmed his suspicions. We finally had a diagnosis- Joe had a primary central nervous system lymphoma. These tumors, unlike gliomas, tend to occur in multiple sites throughout the central nervous system.

The neurooncologists at Mayo had little to offer. Radiation did not produce a durable remission and the tumor was so rare that they had never given chemotherapy for it before. This, along with the fact that I no longer trusted anyone, spurred me to return to the medical library. After many hours of searching the Index Medicus and references at the back of articles(no Internet back then!), I found an article written by Dr. Edward Neuwelt of Oregon Health Sciences University in Portland. He was a pioneer in a chemotherapy treatment called blood-brain barrier disruption(BBBD) which temporarily breaks down the brain's guard allowing high concentrations of chemotherapy to reach the tumor. It was especially effective in treating CNS lymphoma. The only other treatment I could find was a less aggressive one offered by a physician at Dana Farber in Boston. As we struggled to decide, I asked both physicians the 24K question: how many patients have you treated and how are they doing? The physician at Dana Farber was evasive and never answered the question(I would later learn there were NO survivors). On the other hand, Dr. Neuwelt was very open and told us that he had treated nine people with one alive three years and another for two. It wasn't much to go on, but this was much better than 2-3%. At that time, BBBD was a phase II clinical trial available no where else in the country (it is now a multicenter trial). So, now it was off to Portland.

BBBD is a rigorous treatment, done in the hospital and requiring intubation and an overnight stay in intensive care. But, it was well worth it- after only one treatment 90% of the tumor was gone and after a second round of BBBD we never saw it again.

Thus, by overcoming my own despair and becoming my sick husband's advocate, I had been able to find two very new and little-known treatments. Joe was one of the fir st 70 people in the United States to have computer-assisted stereotactic laser surgery and the tenth person to receive BBBD.

There were other factors in Joe's recovery as well. I pumped him full of high doses of anti-oxidants(Vitamins C,E,and beta-carotene)as these have cancer-fighting properties. And, European studies have f ound that 1000 IU of Vitamin E daily may protect normal brain tissue from radiation damage during radiation therapy. Joe also practiced guided imagery where he imagined his white blood cells destroying the tumor. This, and his strong religious beliefs, were very helpful emotionally.

So, my message to you is, don't give up. Use all the resources available, which are far better than when I was helping Joe. If your physician is not aware of a treatment, show him a medical journal article or its listing in PDQ. And, if he/she still is leery, check it out yourself. Investigators of clinical trials WILL talk to patients. And, my experience has been that the best ones are also the nicest.

If you would like more details of how I found Joe's treatments (believe it or not, this is a short version)and some more tips, go to my Patient Advocacy Home Page. Article 1 here is Joe's full story that I wrote for Woman's Day magazine back in 1986. The URL is: http://uhec.udmercy.edu/picct/risinglo.htm

This site also contains a university-approved research survey that I am conducting on the experiences of cancer patients when accessing a clinical trial. So, those of you who have entered a clinical trial or simply looked for one, please fill it out. It should only take about 10 minutes of your time and the data gathered will help future cancer patients. Thanks and Good Luck!!

Lydia Cunningham Rising

URL is: http://uhec.udmercy.edu/picct/risinglo.htm

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Liver Treatment

After having a successful resection of a small colon cancer two years ago, followed by nine months of standard, grueling chemotherapy, my friend had a routine count done in Sept.98 which showed a slight elevation. Fearing the worst she set off to a major, famous medical center in Minnesota for evaluation. After several weeks of testing a diagnosis was made of metastasized liver cancer showing 2 small lesions, one on each lobe. My friend was told to go home for Thanksgiving and come back the first of Dec. for surgery. She took a leave of absence from her teaching job and headed back to the clinic for surgery, Dec.98. Because she had no other cancer sites anywhere and nothing in the nodes, the surgeon told her he would resect the two lesions and leave her with 45-50% of her liver. ( By the way she is 52 years old and otherwise in excellent health.) He also said he would remove the gallbladder just to save another possible surgery in the future. It wasn't until two days after the surgery that my friend became aware that the only thing the surgeon did was to remove the perfectly healthy gallbladder. He found a third lesion during the surgery, which was located near the hepatic vein. He felt it was too risky to resect and told her that he debated about what to do, but finally opted to close her up and do nothing. At that point she had three tumors and was told to go home and get her affairs in order. This situation would kill her in 6 months to year and possibly she might be able to try chemotherapy to reduce the size or slow the growth of the cancer, but that was all they had to offer. Needless to say when she called me, she was devastated. I got on the internet and found the Central Florida Liver Cancer Institute, which is dedicated to using the most advanced techniques of cryosurgery, radio frequency ablation to kill difficult, unresectable liver tumors. I have just returned from several weeks in Orlando where my friend underwent these procedures, used in combination, to kill the cancer in 4 areas. She had one additional lesion that was missed in Dec., but no other cancer was evident anywhere else. This procedure is FDA approved, using ultrasound, cryo and RF and done by a team of a Radiologist, Colo-Rectal Surgeon and others. A hepatic arterial infusion pump was implanted in her abdomen and will deliver a mild dose of FUDR directly in to the liver on two week cycles. This is to bathe the liver in chemo to take care of any possible cells that already had spread out into surrounding tissue. It was the most overwhelming, wonderful experience for her to be told to go home and LIVE!! She knows this is does not mean that she will never have any other cancer to deal with, but she can take those times as they come. But all the test show that her liver cancer is gone, she has all of her liver, which is already regenerating after the dead cells are being removed by the body. She is back home in Illinois thinking about teaching next fall, traveling, etc. I live in California and am back home now thinking about how if she had listened to the world famous doctors she would be facing the end of her life within the next few months, never being told that there was a hope, possibilities out there to look into, and that makes me angry. My message is to spread the word to others about the wonderful clinic and doctors in Orlando, doing some fantastic things, with great experience, skill and compassion. Also, to let peole know that the medical establishment sometimes turns a deaf ear to treatments that are not within their experience or knowledge and deems them somehow less credible. How dare they! Let the patient have the information and decide what to do with their life, and I do mean life.

The clinic has a website - Liver Cancer Care. The doctor in charge is Dr. Gary Onik.

The team has done many of these procedures and has patients coming in from Europe for it. Gary has developed the technique, the probes and is the ultrasound specialist. He trains others and has written 2 books on the subject. They had a conference on the the procedure about 3 months ago in Orlando, advertised and open to physicians from all over. They had a good turnout but noticed that not one major, famous place sent anyone to learn about it. Again, they do not promote themselves,and I am not related to them or anything like that. I just feel that there are people out there being told to cash it in and don't know about this chance for life. When I emailed them about my friend in late December, Gary Onik called me on the phone within 2 hours of receiving my message. He was so excited to tell me that he thought he could help. I could not believe that a surgeon, doctor called me on the phone!! I knew then what I know now they are wonderful doctors doing a terrific procedure and saving lives. I do not know the cost, but my friend had a PPO plan from her work and they paid 90%!! This procedure is approved and recognized and just right for certain people. The cryosurgery is done with probes placed into the liver using ultrasound to locate tumor. They do a double freeze and thaw to be sure that all cancer is killed. Their research shows that to be most effective. My friend's total time on the table that day was 9 1/2 hours. Anyway I'd be glad to give anyone information. Janice Anderson at cfajra@earthlink.net

For further stories go to my BLOG

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