My new dr. recommended watch and wait. I then went on a very low fat low protein diet as well as some serious detoxes. I felt run down and tired at dx, became more fatigued and depressed as the spring progressed, and when I was laid off at the end of July, I became nearly bedridden. The fatigue was utterly overwhelming. In retrospect, my poor health at the time was probably caused by a number of factors, among which the cancer was only one. The diet did not help -- I think I was suffering from B vitamin depletion and going without meat made the situation worse. I just did not have the expertise to design a good program. I saw the dietitian at the local hospital (which had a cancer wing) but she freely admitted she was taught nothing about nutrition in cancer. NCI had nothing either. So I just tried this and that. It was a bad summer. Then, suddenly, I felt as though my cells woke up and I began to get better. I kept tinkering with the foods, supplements. Tried Essiac. By winter time, I was fairly well, and went traveling in New Zealand in February, without any problems.
Year 2: Then, my nodes began to grow slowly, and I went into denial. Went off any diets, did not want to know or think about this cancer. That went on for about 8 months. When I went to see the ONC in November, he said I was moving into having "bulky" disease (one of my nodes was 5 cm) and he recommended local radiation as the least toxic treatment.
By January, my nodes were even bigger, I was getting self-conscious about my bulging neck, I was depressed. Relatives urged me to make appointments with new doctors, one in NJ and one at Sloan Kettering. I also began, out of fear, a new program of detoxification which included aloe. I also began to use a more effective form of thyroid hormones for my underactive thyroid.
Year 3: By the end of March, when I saw the doctors, my nodes were smaller, and both doctors recommended continuing with watch and wait. By summer time, they shrank to practically normal. Spontaneous regression. Did the aloe help? Maybe. Last summer was the best one yet. I became fit again, and felt good most of the time. The only problem was what may be fibromyalgia. I have not had it diagnosed. Exercise keeps it in check. In October I noticed a new node under my arm which is still there. The nodes in my groin are very small.
I have followed a protocol of supplements and herbs, and keep experimenting with various remedies. I also started to learn much more about this disease, and eventually decided to put what I have learned online so it can be of use to others in the same boat. I am pleased with my choice of watch and wait. I still go through denial periods, and "really sick of having cancer" periods. But mostly I am taking this as an adventure, part of life, and try to enjoy what life sends me every day. I figure this disease will probably shorten my life since I am only 48. But then again, maybe ours will be the first generation which will realize some cures. Who knows? I remain hopeful, but live more in the present now. And I am really thrilled to have lived to see another spring! :-)
Year 4: Saw my oncologist in March, and he was pleased with my health. I still have somewhat elevated bilirubin, but my blood profile looks good, and the great news is that my platelets, which had hovered in the low 100,000s since my diagnosis, have bounced back to 219,000!
My Story begins some years ago in 1988, when I was suddenly very ill with a mysterious illness which resembled very violent 'flu. At the same time I had pains and swellings in various places - including the testicles. When I saw the doctor, I could tell from his expression as he examined me, that I was quite seriously ill. He didn't say what it was, but he said that the really serious time would come in about "ten years" and that I should rest as much as possible and he put me on a drug called prednisone. Most lymphoma sufferers will recognize this drug! For a while I was better and went back to work. Slowly, though, I returned to being ill again. I recognize this period now as the "watch-and-wait" time which many lymphoma sufferers go through.
By now I had moved to a place in the south of England called Guildford and was working quite hard. My new doctor took it that I was generally "run down" and gave me several treatments of antibiotics. Eventually I became so ill that I could hardly walk more than a hundred yards and had great difficulty even breathing. The doctor diagnosed asthma and put me on steroids again - I got better (I realise now that the steroids were helping keep the cancer in check and that I didn't have asthma at all!). The breathing difficulty returned and one day I found I could hardly move. I demanded an audience with my doctor, but as he was away, I saw one of the other partners in the practice. She virtually leapt out of her chair and sent me straight to hospital, and I mean straight away!
Now began the long hard series of tests, screening, biopsies, scans and physical examinations. After about two months, the hospital told me they had diagnosed non-hodgkins lymphoma - a cancer of the lymph system and handed me over to the Oncology department, which specializes in cancer problems. Then began even more tests and examinations. They needed to know exactly what kind of lymphoma they were dealing with, they told me. I felt happy. at last, to be in the hands of people who knew what they were dealing with. As I was by now almost "on my last legs" (just how many legs does one have?) I was re admitted to hospital for an exploratory operation and then chemotherapy. In the hospital ward I saw many people who suffered greatly from one kind of cancer or another. I became quite good at the guessing game - what has that person got and how long have they to live.... Some people had a very short time left and others went home again to fight a bit more. There was a special kind of camaraderie among the patients and staff: our business was cheating death!
All this is not say that I was alone. My family and friends constantly gave me support and strength as did the kind and wonderful staff of the hospital. But since I have left hospital, I have discovered a whole new set of friends on the web - all of them keen to find answers concerning this terrible disease. According to our temperament and experience, I suppose, we look for solutions and answers in the scientific or alternative communities. Some of us, however, think that there should not be a division, only a unity in the fight against cancer. If you are interested in the strictly medico- scientific search, why not try the list at http://www.egroups.com/list/nhllow or if you are interested in the "alternative" approach, you can use the form below to subscribe to "nhl-other". What ever you do wish us luck!
Receptionist telephoned me and stated I had an appointment at the Hollings Cancer Center at the Medical University of South Carolina, Charleston. I was dumbfounded and made an appointment to see my doctor because the incisions were not healing well on my back and on that appointment I asked him about the biopsy report. He told me the results were malignant B-type lymphoma and he had referred me to the Hollings Cancer Center.
October 1997, went to Hollings. Doctors ordered Ct Scan after interviewing me. Went back to Hollings for CT Scan results. Oncologist were very positive. Said that Scan showed only a slight enlargement of some lymph nodes. Bone Marrow biopsy was done. The results were Mantle Cell Lymphoma of about 10 percent bone involvement. Subsequently an enlarged lymph node was removed the next week from under my right arm. It was about two weeks before I got an appointment for the biopsy results.
November 1997, lymph node biopsy revealed two different types of lymphoma. The doctors explained the reason for the delay was due to having the biopsy done by three different pathologists, who came up with the same result. I could not understand the written report, but Drs Carol Sherman and William Schmidt were able to explain them fairly well. They explained that 30-35 oncologist meet once a week at MUSC to compare notes about different cancer cases. They both explained this was the first case of this nature that anyone on the board knew about. The findings were not just one or two doctors but that of several.
December 1997, another Ct scan of chest, abdomen, and pelvis. Returned for results in January 1998. Both doctors said it appeared the enlarged lymph nodes had returned to almost normal. That my blood counts were normal and there appeared to be no organ involvement. I was scheduled for another Ct Scan 3/98.
I want to add that the biopsy done by the Military Institute of Pathology also revealed some Basal skin cancer cells. Dermatologist at the Naval Hospital Charleston treated my back area by scraping an area about 2inches in circumference and using a laser beam to bar-b-que the cells. Follow up visit showed no signs of the Basal cells were left.
March 1998, Another scan done and follow up appointment at Hollings with Drs Sherman and Schmidt. They both said the scan could have been considered normal if they didn't know my history.
April 1998, my voice began to become hoarse as though I had a bad cold. Because my daughter was getting married I did not mentioned this to anyone. I did not want any attention diverted from her day. After the wedding I returned to my family doctor. He prescribed an antibiotic which didn't affect my hoarseness at all. My hoarseness continued to get worse. I was referred to ENT doctor at MUSC. He looked at my vocal cords with the scope and found nothing. He stated my cords were a bit red and appeared to acid reflux. More pills, half pills, syrup, etc.. All these changed nothing.
May 1998, Ct Scan of neck revealed a growth on the outside of my larynx. A needle biopsy revealed it was from the lymphoma. Doctors could not tell which type. I was referred to Dr Williams in Radiation Oncology. I must say Dr. Williams is a caring and compassionate person. He explained the problem and offered 20 sessions of low dose radiation to shrink the tumor.
June 1998, my last of 20 radiation treatments completed on 6/30. My voice returned to normal in about a week just as Dr Williams said it would. I did experience some low blood counts from the radiation. They returned to normal shortly after the last radiation treatment. My neck area was red and a little sore such as a bad sunburn would be. Lost all my hair from neck area, which doesn't bother me at all. My throat was sore and hurt to swallow. Could only eat soft foods. Since I love ice cream, I was in pretty good shape.
July 1998, Follow up with Dr. Williams and after a thorough exam with scope and punch, pinch, etc with and for his students. He stated he did not need to see me anymore. My wife and I were delighted. Back to Hollings to discuss some possible chemo with Dr Sherman and Schmidt. Some background: At the same time as the growth began on my larynx, I also had two hard lumps appear on my chest. One was quite deep in my right breast. The other was very shallow just left of the center of my chest slightly under my left breast. Doctors has pathologist take a needle biopsy of the mass in my right breast. However, not enough cells were taken to determine which type lymphoma, and subsequently, a Dr. Baron removed both masses for biopsy as requested by Dr Sherman. The biopsies were of the Follicular B-Cell type. I suppose this was good news because Dr Sherman felt no chemo at this point was warranted. That was okay with me. I understand that chemo doesn't work if the cells are not growing and, therefore is subjecting your good cells unnecessarily. One could also reach a limit of chemo and not kill many of the cancer cells.
August 1998, scheduled for Ct Scan 1 September 1998. This scan will include the neck area as well. I noticed I've developed a bit of hoarseness in my voice again. Dr Williams said I might get a little hoarse from the radiation but would go away in two or three weeks. I'm a bit concerned because the hoarseness seems to be getting worse. The scan should pick up anything. If not I will certainly bring this to the attention of Drs Sherman and Schmidt at my 10 September 1998 appointment.
During this entire period, I have not and still do not experience any of the symptoms described by NHL patients. My only symptom seems to be tiredness. I have a loss of energy and my sleep is restless at times. My Dad was Dx with a malignant lymphoma in 7/74 and my oldest brother with immunoblastic high grade lymphoma in 12/97. Six chemo sessions and my brother has been in remission over one year from his last chemo.
Winter 1996-1997
Finally, Joanne’s oncologist called and asked her to come to the office.
There, she confirmed that it was low-grade Non-Hodgkin’s lymphoma. It was
devastating to learn this, but at least we could begin to understand the
adversary. The official diagnosis:
Non-Hodgkin’s lymphoma
Joanne decided to try the macrobiotic diet. We reasoned it could not hurt to try it. Meanwhile, we commissioned a search to find what alternative and conventional options were available. We found this to be a mixed blessing. Too often the conventional prognosis "incurable" appeared on the pages we read.
Summer 1997 Joanne lost too much weight on the macrobiotic diet, so she decided to try Peter D’Adamo’s blood type diet (www.dadamo.com), which we still follow today. We came to know of D’Adamo through our research. He also suggested various herbs and supplements. Throughout the summer, blood tests were taken. Joanne had no symptoms, but her lymph nodes continued to increase in size and new lymph nodes appeared. Each time this happened it was like getting kicked again in the stomach.
Fall 1997 We could not wait any longer. We had to act. It was time for plan B -- Dr. Burzynski’s antineoplastons therapy. Since the therapy was non-toxic, so we reasoned it could only help. Still, this was a difficult decision to make. We interviewed his patients and met them outside the White House at an anti-FDA rally. Made an appointment and took a plane to Houston.
Antineoplaston therapy is expensive and not easy. It required the surgical insertion of a Hickman catheter and an education about how to administer the catheter site, use a portable pump, and manage bags of medicine. Traveling from Staten Island to Houston every month or two, and Dr. B’s FDA woes added greatly to our anxiety.
In December, Joanne’s initial response to antineoplastons was apparent, but not as yet measurable. Then, a setback occurred in January when she developed a pleural effusion that caused pain and worry with each breath. At that time, Burzynski increased the dose of A10 to 250 ml. By the end of February the effusion seemed to resolve and further decreases were observed in her lymph nodes. In March, CT scans confirmed the positive response. It reported a 36% overall reduction. Elation followed. We allowed ourselves to believe we were heading towards remission, but it was not to be. In May a CT scan showed an increase in her largest pelvic lesion, so her overall reduction from the baseline scans was 21%. Dr. Burzynski speculated the increase in the lesion to be necrotic tissue or a temporary inflammation. He indicated that he could not try other drugs because Joanne was participating in a clinical trial. At this time, Joanne no longer had detectable lymph nodes in her neck or under her arms and these improvements (lesions less than 2 cm at the start) were not calculated in the reduction. Her lab results consistently reported normal ranges for all tested elements, so we had enough positive information to continue. Her primary care doctor also felt she was benefiting, but he thought the price was high. We decided to continue the therapy.
(During the course of the antineoplaston therapy a solid node was detected on her thyroid. After numerous tests, a fine needle aspiration determined that it was hurthle cells (not related to the lymphoma). We still need to deal with this issue, but decided to fight one opponent at a time.)
In August of 97, things started to fall apart. Joanne’s pelvic node got really big (7x10 cm.). An MRI was ordered to rule out necrosis. Further increases in the dose of antineoplastons made Joanne groggy and her speech slurred. New nodes appeared, and the pelvic node increased more. She experienced leg pain. The tests suggested to all we consulted that she needed to change plans. A gallium scan indicated lymphoma had spread even to her liver. When Burzynski saw the scans he called and suggested chemotherapy. He said the sudden increase indicated the lymphoma (part of it) had changed grade. He said we could expect good results with chemotherapy. Joanne needed to hear that from Doctor Burzynski. I prayed we did not wait too long.
We feared chemotherapy, but understood that its use against lymphoma was legitimate. We consulted Carol Portlock at MSK. She advised us to begin CHOP (6 rounds, every 3-4 weeks). We provided a list of oncologists on Staten Island, and she recommended Dr. Forlenza to administer it. Doctors at MSK didn’t think much of our Burzynski experiment. CHOP: Cyclophosphamide (Cytoxan), Vincristine (Oncovin), Doxorubicin (Adriamycin), Prednisone. We read about the medicines carefully.
Her first round of chemotherapy was administered in the hospital. It’s done that way in case you have an allergic reaction. Thankfully, the infusion went well. At home, when the anti-nausea medicine wore off, however, she did get nauseous. By the end of day two, she felt quite normal.
Joanne’s response to CHOP was dramatic. The pelvic node that prevented her from bending normally without pain, quickly shrunk, and all the newer lymph nodes disappeared almost overnight. Side effects included nausea (1 day after each infusion), muscle and joint pains. The only medicine that helped the nausea was Zofran. She did not get to try that until her fourth round. When on prednisone (five days each round), she felt great, but mood swings followed, along with a general sense of discomfort.
After the 3rd round, CT results documented a dramatic response, but it also showed hypodense lesions in the spleen, and 3 to 5 cm lesions remained. Our biggest worry was that the response would not be complete. Her doctors (Forlenza and Portlock) seemed pleased and anticipated she would need only 6 rounds. All her doctors believed the spleen lesions to be necrotic material and not cause for concern.
The moment of truth came in early June of 1998. Forlenza ordered CT scans and a gallium scan 6 weeks after her last round of CHOP. The CT scans showed more improvement, but a few lesions were unchanged. Her liver was clear, and Forlenza said the remaining lesions were probably scar tissue. He predicted they would not light up in the gallium scan. A few days later, the gallium report came back as negative! Forlenza sent us home and asked to see Joanne in 3 months. He suggested keeping her catheter in place, as nhl-low "often comes back." We knew this already, so his suggestion did not surprise or disappoint us. We enjoyed the moment . . . a marvelous, if temporary, peace.
July 1998: Sometime during CHOP, Joanne began to experience joint pain (coincidence/side-effect?). To rule out bone metastases, a bone scan was ordered. Thankfully that test reported no abnormalities. Thyroid and blood tests were also normal. Strangely, Joanne cannot feel her thyroid nodule any longer despite statements made by her doctors that it would not be effected by the chemotherapy one way or the other.
OUR STRATEGY FOR A DURABLE REMISSION:
We understand that when you have b-cell lymphomas, immune stimulants
should probably be avoided, but Joanne does take the following immune
modulators and supplements to increase (we hope) the odds for a long remission:
Aloe vera gel (whole leaf) juice, flaxseed oil, turmeric, quercetin
Licorice root (1/4 teaspoon) with potassium, green tea (extract/tea)
Broccoli sprouts, beta carotenes, selenium, isoflavones,
Folic acid, NO extra vitamin B1 or B6 (they may stimulate tumor cells),
Zinc, Vitamin C (modest amounts), Vitamin E
For joint pain: Glucosamine Sulfate, Calcium, Magnesium, Vitamin D.
To combat side-effects of chemo: Silymarin to clean the liver, CoQ10
to protect the heart.
Our plan is to stick to a good diet, exercise, and give Joanne’s body and spirit what it needs to fight the good fight. I hope our experience assists you in your fight.
POSTSCRIPT: Burzynski’s therapy for nhl apparently works better with other agents (as it was first used in his pre-clinical practice). From an inside source, I learned his nhl trial results are approximately: 50% stable, 10 response, 40% progression. The same source indicated his brain cancer results have been very good. I like to think the antineoplaston therapy set up the lymphoma cells for apoptosis (programmed cell death), thereby making the chemotherapy more effective. Can’t ever prove that. We did not appreciate fee increases during the course of the therapy that rose from 6,000 to 14,000 per month.
CHEMOTHERAPY AND JOINT PAIN?: Joanne’s joint paint is slowly getting better. It waxes and wanes somewhat. The increase of Glucosamine sulfate to 1000 mg three times may be helping. A strange swelling on the bottom of her foot put her on crutches for a few days. It came and went. Confused everyone. Looked like gout, except no red skin and her uric acid levels are low. I attribute these happenings to the chemotherapy, but no one can say for sure; her doctors say it could not be from the chemotherapy so long after the last round, but the fact sheets do indicate side-effect could be long term.
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Updated 8-13-1998
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