Well.. Gosh how did I find myself in this situation? That's something I often ask myself.
I'm not sure there's a definitive answer, but there is a long story involved so that just might help explain how.
Grab a comfortable seat....
While shaving one morning I noticed a small lump on my left neck under my jaw. It was about the size of a baked bean, was rubbery but not at all painful. I entered these details into our good friend Google and searched through the likely answers.. The majority said something like .. most likely a benign cyst, but could be Hodgkin's or Non-Hodgkin's Lymphoma, see your Doctor.
So off to my doctor I went and he had a poke and a prod and said.. "most likely a benign cyst". "Leave it for a couple of months and see if it goes away".
So I left it for a few more months and it didn't go away.
As the months passed the lump grew to about 20mm in size and I was convinced it was a Lymphoma.
My GP organised for me to have a fine-needle biopsy performed but the results came back negative for any cellular abnormalities.
This really surprised me as the doctor performing the biopsy discovered another 8 swollen lymph nodes surrounded the lump.
My GP did not bother to report back to me the negative test result, I think he too believed I was paranoid. I made an appointment with him and told him that a negative FNA did not rule out Lymphoma, it just meant you needed to look harder. I told him about the other lumps that were found and he immediately wrote a referral to the ENT dept at Wellington Hospital.
The specialist I was to see was Peter Blake. Peter talked to me about my concerns, took a 10 second look at my neck and throat and asked me what I believed was the cause of the lumps. I said I thought I had Lymphatic Cancer. He suggested I sit down.
He told me that he was 99% sure that I had Hodgkin's Lymphoma and that it was of the Nodular sclerosing type. I had been right all along! In an instant I simultaneously felt both shock and triumph.
The blood run from my face, my mouth dried up and I could hardly speak. I struggled to move my tongue enough to ask for a glass of water. I thought I was mentally prepared for the diagnosis, but somehow my body wasn't and I just sat there unable to speak or function for about 5 minutes, he used this time to tell about Hodgkins and it's ease of treatment.
He ran a few more tests and then said he would book me for a surgical biopsy as soon as possible.
Two weeks later he removed a section of the lump under general anesthetic. The incision was 70mm long and yet it healed with no scar. The guy is brilliant at what he does. In fact he is still the most caring, polite and professional person I have met in this entire 5 year journey.
The biopsy sample was sent off for histology and the results were as he expected: NS Hodgkin's Lymphoma. I was booked to visit the Blood & Cancer dept at Wgtn hospital about 6 weeks later.
There I was told that 95% of patients respond very well to treatment and that NS HL was "The best Cancer" to have as it had the best outcome of all the cancers. It did little to relieve my apprehension.
Treatment was to be 6 cycles of ABVD followed possibly by some involved field radiation.
They started me almost straight away. Chemotherapy sounds scary but it didn't look that bad once actually in the day ward. They have 2 large rooms containing 8 Lazy Boy style chairs.
Once seated they put a line into the back of your hand and hook you up to a saline drip.
Over the next 3-4 hours the various cancer drugs are either injected or connected to your drip and slowly fed into your bloodstream.
I left the hospital after my first session of Chemo (each cycle was two sessions, two weeks apart) and didn't feel too bad. I took a few days off and then went back to work. However when I returned for my next session two weeks later I was told my blood counts were too low and that I should come back the following week. I returned the next week and was again told that they were too low and that I was suffering from Myelosuppression . My Platelet count was 10 and the normal range is 150-450. No one had any explanation as to why it was so low after just a single dose of a relatively mild chemo regime.
I was told I had ITP, that there was no known treatment for it and it precluded any further Chemotherapy. I thought that doesn't sound right.. and went about studying night and day, fueled by the industrial strength steroids they were feeding me. I concluded that I did not have classic ITP as my blood counts showed elements that suggested otherwise. I went head to head with the Haematologists at the hospital and finally in the end they agreed that they had no idea what was wrong. What ever had happened during that first round of chemo it had wiped out my bone marrow and it has never fully recovered.
Meanwhile the lump on my neck had completely resolved.. My aches and pains had disappeared and I felt completely well. The doctors insisted I needed to have Mantle field radiation as they believed that this was now my only treatment option. I insisted that my research showed that chemotherapy could be re-started but at a lower dose that would then be slowly incremented with no loss of efficacy.
The oncologist's reply was "You can't make us kill you". I told him he was both right and wrong at the same time on that point.
All treatment stopped as I refused radiation treatment believing that the late and long term risks were too great. I believed that ABVD was the best treatment and that I would get it somehow. I thought about going overseas, but realised that no insurance company would allow a hospital to take the risk I wanted as it was outside normal guidlines.
Then one morning a few weeks later I read an article about a new scanning procedure being carried out in New Zealand for the first time. It was called PET, Positron Emission Tomography, and it was ideally suited for finding active tumours particularly Lymphoma. I contacted Pacific Radiology and asked that I be scanned. They told me that I needed to be referred by a Doctor so I approached my Oncologists and they didn't want to have a bar of it, somehow thinking that I was asking the health board to pay and that it was not needed. I remonstrated with them that what right did they have to control how I spend my own money!. From there I approached my GP and he instantly wrote out a referral and I became one of the first people in NZ to be PET scanned locally.
The scan is quite fascinating, you are injected with a type of radioactive sugar that is readily absorbed by the sugar hungry cancer cells. You're made to lay perfectly still in the dark for an hour while the absorption takes place. You can't read or think too hard, or move around because this would cause the sugar to be absorbed by your eyes/brain/muscles and give a false positive on the scan. The actual scan itself takes around 40 minutes and is very similar to a CT scan.
The results came back negative a couple of days later, no sign of any involvement. I was clear.
I used this as ammunition in my fight to not have radiation treatment. There was nothing to irradiate was my logic.
Several months went by and one day I noticed a new lump, this time on the other side of my neck. I contacted the hospital and an appointment was made, again several weeks away. CT scans showed I had involved nodes in my right neck and behind my heart and lungs. This seemed very surprising considering the clear PET scan just a few months earlier.
The planned treatment was fairly scary stuff: High dose chemo followed by an autogulous stem cell transplant. This involved having GCSF injections daily to coach my stem cells out of my marrow and into my blood stream where they could be harvested.
The actual harvesting was done on an aspheresis machine at the hospital and involved having a hollow tube inserted into a vein in my neck and then being hooked up the machine where the blood was centrifuged into it's components of plasma, red cells and stem cells with the stem cells being kept and the other cells reintroduced back into my neck. The whole procedure was done twice as on the first occasion not enough stem cells were available for harvest.
The second time round was a nightmare as the surgeon who's job it was to install the line in my neck had never done the procedure before. The proceedure is done in an operating theatre under a local, so you are wide awake. After two failed attempts by the surgeon I was beside myself, in severe pain and shock. She had made two incisions in my neck and tried to push the line into the vein, failing both times. Eventually another surgeon came to her rescue and took over, succeeding to insert the line into a now third incision. This was something I would never want to go through again. Laying on a bed while someone cut holes into my neck and tried to push a rod into an open vein, all the time telling me how it wasn't going right and how difficult it was for her! It took over two weeks before I could move my neck without pain.
The hospital investigated and changed it's procedures as a result of the incident.
Ironically we never used the harvested stem cells, they are now in cold storage at the hospital.
The Oncologists decided they would try a different mix of chemotherapy drugs on me, none of which were in the same class as the previous ones. The thinking was that we could avoid any repeat of my previous problems with blood counts and Bone Marrow suppression.
The regime was called "ChlVPP" (Clivop) an acronym for the drugs involved. I took the drugs for the first two months, this time only one was administered by IV, the rest being in tablet form.
My blood counts dropped and I developed a severe nocturnal back-ache, night sweats and itchy skin. All B symptoms of Hodgkin's Lymphoma.
On my next visit to the hospital my doctor asked me how I thought the treatment was going. I replied "Crap!" I have a low blood count, and my Hodgkin's is getting worse everyday!"
He replied "Bugger! Bugger! Bugger!". I asked what we could do and he said that we just had to keep going.
I asked him why keep going with Chlivp when it clearly did not work and my blood counts were as bad as they had ever been on ABVD. Surely we might as well just go back to ABVD? at least we knew that it worked!. He replied.... "OK", "You can start today if you like"
I went back onto the old treatment, not surprisingly it did not kill me as he had predicted it would and I went on to complete all 6 cycles without any major problems. I was injecting myself with GCSF everyday to help keep my white blood counts up. (The community nurse tricked me into doing the injections myself by saying everyone did it. I think she knew I wasn't likely to screw it up) :)
Mid way through at around cycle 3 (3rd month) I had a CT scan and this showed complete resolution of all active areas. This is what they call "remission", a kind of medical purgatory, no guarantee either way.
At the completion of cycle 6 I pointed out to the junior Oncologist that one of the lumps in my neck was still palpable and although down from 40mm in size it was still about 4mm. I considered this unusual as the previous large lymphoma had disappeared completely within a few weeks. She said it was just scar tissue and not to worry. I did worry, I knew better.
I completed my treatment in October 2007 and was given an appointment for a follow-up in 3 months time.
Every day I could could feel the lump in my neck growing fractionally bigger. Then once it reached about 10mm in size I phoned the hospital and asked for an appointment. Weeks later I saw a junior oncology doctor who said it was nothing to worry about. I suggested we should be hitting it with radiation now. He thought I was worried about nothing.
The lump grew daily and started to become painful, I asked the local community nurse to come and measure it and see if she could spur the hospital into action. She measured it at 35mm and reported back to the oncologists that it was indeed needing attention.
Two pain filled weeks later I had another biopsy performed and once again it showed that I still had HL.
I was given a 2nd PET scan. This time paid for by the hospital . I told the doctors before receiving the scan that I felt something under the right armpit when I lay on that side, so there were no surprises at all when the scan results were read out.
It showed areas of activity in my neck and right axilla (armpit). I joked that I could have saved them them the $2500 for the scan!
Three months after the biopsy and 5 months after I first pointed out the lump I was started on radiation therapy. The Radiation Oncologist said that she wanted to treat all areas that had previously been involved and that included my mouth. I argued that HL travels down and that as I had no sign of disease in my mouth that I felt it was over-treating. She said she wanted to make sure that we got all areas, and that the disease could still be active in cells in my throat and neck and therefore spread if left untreated. I agreed that it wasn't a risk I wanted to take.
I'd read previously that the parotid (saliva) glands are permanently damaged by doses of radiation exceeding 36gy and it was this amount of exposure that she was recommending to my chest, armpits and neck. However I felt that no more than 30gy was necessary to treat the mouth and she agreed. Treatment commenced in early March 2008, consisting of 20 cycles at 1.8gy daily on weekdays, the radiation machine would be run "cold" in the area of my parotids giving approx 26gy in total.
By the time treatment had started two things had happened: Firstly the lumps in my neck had completely resolved. I'll never know whether this was because of my self prescribed daily intake of 9000mg of Vitamin C, apricot kernels (B17) and green tea (an anti-oxidant) or some other unexplained reason. I still had a lump in my right axilla. Secondly I had developed a large swollen lymp node under my jaw. It was soft and not at all like the previous lymphoma. I concluded that it was lymphadinitis and told the oncologist so. She insisted it was lymphoma, but agreed to a blood test to rule out the possibility. A phone call from the hospital that night confirmed I had an elevated white blood cell count: signs of infection. She agreed that I was right and prescribed antibiotics. The swelling went down in just a couple of days.
I have to tell you I did not enjoy radiation. Due to the antibiotics I developed oral thrush almost immediately and this combined with my radiation burnt mouth and throat made eating impossible. The pain from drinking water alone was unbearable. In order to eat I gargled with Aspirin and then gulped down meal replacement type drinks before the pain returned. I lost 15kg in a month. I have yet to gain it back 4 months later.
I did however find a great treatment for severe mouth ulcers, of which I had over 50. Manuka Honey. I shared this knowledge with the staff at the radiation dept, and although somewhat skeptical at first they now pass this info on to other patients.
Radiation treatment has left me with reduced taste, almost no saliva and the strong possibility of thyroid problems in the coming years. Risks of secondary cancers is also very high, but this has to be weighed against the benefit of being lucky enough to be alive to get them.
However it looks like the treatment was wasted and not all areas of involvement were covered. A 3rd PET scan last month reported.. "Increased activity in: 3 places in the mediastinum, one enlarged subcarinal node, inferior pole left hilar of lung, and aortopulmonary window on left. These are consistent with disease reactivation".
This scan result also didn't surprise me as just days after the scan my "B" symptoms had returned.. Back ache and night sweats. Thankfully no itchy skin this time! Said to be caused by the body producing histamine in an attempt to fight off the cancer. I got my local GP to send me the scan results as I had earlier phoned the hospital and asked for an appointment closer than the one they had scheduled in two months time. I was told that they were fully booked but that if the scan result was in fact positive they would be in touch. Well it was positive and they took two weeks to send me a letter asking that I come in in a further two weeks time.
It was at about this point I gave up on the NZ health system! I'd been telling myself that I should go overseas for treatment from day one, but I'd been assured that I was getting the best care here in NZ and there was nothing to be gained by travelling. I told them that I had money put aside as a fighting fund and if there was any form of treatment that they thought I should have that was outside the public health system that they should tell me. They assured me that they would. (I have never been informed by any of the specialists that I have seen of the more advanced equipment and treatments available elsewhere.)
I researched refractory stage 4B Hodgkin's disease on the Internet, the empthasis being on refractory. The prognosis does not make for good reading. I then looked for the term "worlds best cancer treatments" and came up with a short list of a couple in the US, Australia and Europe. One that I looked at was Leonardis Klinik in Munich. It didn't look much like a cancer hospital to me so I ignored it and looked elsewhere.
Then by chance I came across this website... . I was amazed, this guy had exactly the same form of HL as me and had been through years of misdiagnosis and failed treatment far more than I had. He is now in remission and credits the good work of the doctors at the Leonardis Klinik for doing it.
I contacted him immediately and he told me that one of the senior doctors, Dr Jacob, had moved on and now worked from a different clinic. This worried me as I would need to know if she moved or was pushed, did her new clinic offer the same treatment? I emailed her and she replied straight away. She recommended I receive my treatment not with her, but to stay with Leonardis. She offered some advice on my treatment plan and said to keep in touch. This impressed me greatly as she is a highly regarded specialist in Stem cell research in Germany.
So this is where I'm at now.. waiting to get my stuff together so that I can travel to Munich for private treatment. Some of it conventional (stem cell transplant) some of it cutting edge (Dentritic cell vaccine) and not available in NZ, Australia or the US. My reasoning is that why wait until I have exhausted all my options before going to such extremes, surely it makes sense to get the best treatment now while I am still relatively healthy.
I travel to Germany in about 2 weeks, I'm taking the stem cells that were harvested in 2006 with me where they will be transplanted following high dose chemo.
I promise the posts will be a lot shorter from here out :)
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