My brother and I in Spain summer 2005 - I'm on the right!!
I first experienced the symptoms of HD in 1996 after collapsing in the gym after a winter workout. I caught the flu and never really recovered and suffered night sweats and terrible low back pain.
After receiving a plethora of biopsies with no conclusive diagnosis - just marked down as Lymphoma? I turned to self help!
The surgeon at the Brompton in London, UK said, ' you don't have Lymphoma, there is no point seeing other oncologists they will never find anything'. ' and about your back pain - we all get back pain!'
The doctors never took my chronic sacro-illiac pains seriously and a specialist I saw said you have tendonitis and some inflamation, just keep taking Neurofen slow release.
There was only alternative help therefore and so that's just what I explored.
By some sheer luck I had a spontaneous remission lasting 4 years probably from the massive amounts of Acupuncture and Chinese Medicine I had back in 1997.
4 years later it came back after a long period of stress and lack of sleep and getting over tired. They re-analysed the 1996 biopsy and found HD was there all along so I now knew I had been misdiagnosed back in 1996 as it was obvious the histopathologist had misread my histology slide.
I was then treated with the a non-standard Hodgkin's regimen by a general oncologist in the UK and just weeks after the completion of this strange regimen (14 cycles of BMOPP/CA) I was diagnosed as refractory and the HD visibly came back within weeks at the site of the pyrotid lymph node.
I had also been setup at this point for radiotherapy to the mantle field which for some reason had to be aborted after just 3 cycles (blasts) due to complications not understood nor expected. Probably just as well as the mantle field didn't include fully the new enlarging pyrotid lymph node.
This new lymph node was biopsied and again showed Hodgkin's.
I decided to try all things alternative again at this point, but had not researched nor had control of my disease at this point. I used different acupuncturists and never seemed to get any better. I saw too many amatuers and charlatans who all offered me potential 'cures' !
The Oncologists referred me to the Hammersmith Hospital for a stem cell transplant - but just one look at the hospital and the apherisis room, which doubled up as a day coffee room, made me think that I would die there, so I turned to my family for help to get me to the USA - MD Anderson in Texas, Houston.
A new piece of the jigsaw puzzle did however fall into place at the Hammersmith - a bone scan there finally showed I had Hodgkin's in my sacro-illiac joints, femurs and lumbar spine all along, and that was the likely cause of my back and sacro-illiac pains I had suffered all these years!
Finally after giving up mentally on the UK medical system I went to the MD Anderson in Texas, USA with only weeks to live and was rescued by a new chemo regimen untried on HD before (Gemzr and Navelbene) after two other chemo regimens had failed, including ESHAP. Astonishingly however I had such amazing results on this Gemzar/Navelbene protocol I was then queued for a stem cell transplant.
In June 2002 I underwent the autologous BMT after the docs origninally told me there was little chance I could have one having arrived in a wheelchair weighting about 8.5 stone and having failed all common chemo rescue regimens and being so HD Advanced until they tried the magic Gemzr/Navelebene combo.
Having done some serious acupressure to stimulate Stem cells and a white cell count inconjunction with G-CSF, I had the most increditble amount of Stem Cells to use for the transplant procedure and plenty to freeze store!
After a successful? ABMT I emigrated to Australia and achieved clinical remission for about 9 months, although I had not left the MDA with a clear PET scan (right axilla hot), only a clear Gallium, no PET was repeated after the BMT. So 9 months after the BMT I had a the local recurrence in the right axilla (armpit), ironically so as the PET always read positive here before. This was cleared up with radiation and I achieved complete remission again for another year - Again no PET scan just Gallium negative.
A year later then since the local recurrence I had pretty much used up all my cards now, so I looked into all sorts of alterntaives in Australia and the USA for new methods of treatment.
I demanded this time a PET and an MRI to concur findings. I discovered that the MRI results conflicted with some of the PET hotspots, and in fact the PET which reported Stage 4 disease acutually was stage 2 from discerning that 2 hotspots were infact old disease which could be seen at the locations in the MRI!
Having tried Sir Arnold Takemoto's protocol using low and high dose vitamin C, I turned white after just 2 high doses of Vit C and with affirmations from the administering nurse I decided to discontinue the treatment, having had a portacath put in my clavicle region at vast expense and moderate suffering to faciltitae more easily the Vit C administration. However I accepted that this will probably be of use later, and so it has been.
My counts continued to get worse and I knew I had to do something and give up alternatives at this point - the progress of the disease was evident and I had to get real about it, so I left Australia and flew to Houston to see my great doctor, Dr Romaguera at the MD Anderson in Texas.
After another biopsy, this time fine needle, at the MD Anderson, where I decided to get a second opinion, I decided to hang on until I was fully symptomatic before having treatment - very stupid looking back on it. I managed six months and had in the time researched Anti-CD30 immunotherapy. The MD Anderson were not offering it so I began the process of trying to get on the Medarex trial going at the Sloane Kettering in New York for which I was accepted.
On the 8th of Jan I flew to NYC and enlisted at the Sloane Kettering. Around the 20th Jan 2004, I started my 4 Week course of Medarex 060 and the doctors sorted out my HGB levels with a couple of blood transfusions in between treatments. Unfortunately this drug did not help me and the trial itself was not successful. New variants are under development though.
Since then, I underwent more rescue chemo (due to lung and liver problems), at the Royal Marsden Hospital just outside London. Initial single agent Gemzar treatment was not the success we hoped for. I was out of options and chemos now and had come to the end of the road with the RMH - it was only palliative treatment they offered. I would not give in....
More research and weeks later I found with the help of Claire Mason on this site the light at the end of the tunnel, so it seemed to me. A new place called the Leonardis Klinik, offering new diagnostics and combinational treatments with both orthodox and complementary medicines. So I flew to Germany for a consult and decided to go with Germany. 1 week later I was there, breathing badly, hardly able to walk and in 'bad condition'.
I underwent about 6 weeks of 3D radiotherapy in Germany through the Leonardis Klinik at the same time having chemo (Procarbazine & Vinblastine) in low dose as I have had so much already. As my bone marrow couldn't stand up to it, I had umbelical cord blood stem cells which regenerated my bone marrow greatly, starting as early as 2 weeks to see the results in blood tests. Good red and white cell counts and even normal HGb levels.
13th December 04, I was PET negative!! after just about 3 months treatment in total. It was simply amazing. I then had to have Rituximab to get rid of CD20 positive micrometastasis in the peripheral blood discovered by the incredible molecular blood test available through Dr Geising in Germany. This test, a bespoke type of PCR test, which disovered the presence of CD20 on my tumour cells circulating in the peripheral blood, though undetectable in PET and CT scans helped resolved the remainder tumour cells.
My last one of these tests confirmed Zero remainder tumour cells in the blood - the first time ever - a molecular remission - something far harder to achieve than the diagnostic scan remission.
November 2005 - almost 1 year on!! and I have been in REMISSION for nearly 1 whole year. That is the milestone for me. I have had more stem cells to repair neurological and liver damage from the chemos, also systemic redifferentiated cells to repair other non-specific damage. I feel great!
My immune system is rather damaged due to the High Dose chemo and plethora of other chemos - but technology is here and coming to help repair this over time.
July 2007 - Still in remission, and I mean not just a CT remission, but a molecular remission. I qualified as a ski instructor and came back as CEO of Datography UK Ltd. Got quite a few infections and have needed immunoglobulins for support. Some of the infections come from the radiation damage in the lungs which causes chest infections. I have acupuncture every fortnight and I party like the best of them. I'm sure I will get fitter and my lungs will get
May 2008 - Still in remission, molecular tests show some increase in micro tumour cells since christmas, but nothing has become of it. Proactively I have had 3 cyles of Rituximab as a preventitive without any side effects. Will have test to see how that does.
Prevention is better than the cure right!
Went Heli skiing in Chamonix this year but struggled with oxygen intake as my lungs have been so damaged by the radiotherapy and chemo over the years, so I am now playing guinea pig again and have had embryonic pig stem cells and am taking growth factors in the form of peptitdes to repair as much of it as possible. These peptides are just one simple injection once a week for 10 weeks, an apparently i should see an improvement at about 6-8 weeks. Will keep you all posted!
It is Dr Jacob and her fabulous team I have to thank for being where I am today. I urge anyone to speak to Dr Jacob for a second opinion on their treatment to see what other approach could be taken. Just by speaking to her you will feel an extra ray of light in your journey.
Hope all this spurs you guys on!
Ollie
