I'm an old hand at and with Hodgkin's Lymphoma, I first had it when I was 24 and I'm now 40 (2013).
First time I had it, i was green, scared and actually didn't have a confirmed diagnosis at the time. This was back in 1996. Starting with me collapsing in the gym after a workout, i then got flu like symptoms that didn't clear up with antibiotics and a sharp excruciating pain in my sacro-illiac joints every night.
At a London hospital in in 1996 a CT scans showed up lymphadenopathy, enlarged numbers of lymph nodes in my chest, clear to see in black and white, yet the chest lymph node biopsy came back negative. All my forms at the hospital noted"Lymphoma?"An Italian surgeon went on to perform a cervial lymph node biopsy (in the neck) who's number 2 - a registrar did the operation and literally screwed up my biopsy completely. Not only did he cut the wrong way into my neck, vertically instead of horizontally, I felt the whole thing as the lymph node was wrapped around a nerve, the surgeon declared I would never find Lymphoma. How wrong he turned out to be.
The suffering with massive shooting pain around my SI (sacro-illiac) joints always started at about 2am and was a dull ache throughout the day. The only respite was a very hot bath that I just lay in for the pain to die off whilst I guzzled Neurofen to stave off the pain. The two together carried on for months ahead.
I had no treatment as there was no diagnosis, so I turned to acupuncture and after about 3 months of it, twice a week, and some continuous manipulation of my hip joint to relieve the SI pain I was feeling much better.
I went back to the hospital and they gave me another CT scan. Miraculously the lymphadenopathy had completely disappeared on the scan and they said to just come back to them if and when I felt worse.
The pain in my SI joints was still there at this point but after another 3 months this subsided dramatically, and the nightmare I thought was over for good.
4 years later at the age of 27, after a huge fortnight holiday in Bali with the boys, with little sleep and far too much fun, I came back to the UK with a heavy schedule including playing in a band. I started having the flu like symptoms back and problems with my SI joints again. What made it worse this time was the itching and later night sweats which got worse and worse over time. Again all the biopsies came back negative. I just couldn't believe it, the agony of not knowing and so much pain and suffering from the sweats and itching and weakness. So I was referred to doctor after doctor and I even went to the centre for tropical disease at St Georges in London, all of which were drawing blanks until Christmas of 2000, when my tropical medicine doctor decided to have the 1996 biopsy re-analysed. Something did not add up he reckoned. The re-analysis of the pathology this time found that I had Hodgkin's all along and yes I had had it those 4 years ago without treatment. Unbelievable! Ok so how could they have missed it?!! it turns out that the slices cut and stained by the pathologist Dr M.S. were not deep enough in the sample biopsy and it was when a better pathologist literally dug deeper they found the classic RS cells (Reed Sternberg, Hodgkin's disease cells)!
I was in the private sector at this point, which I didn't realise at the time was actually bad thing for someone with cancer, sitting outside of a centre of excellence for it, and I was referred to a private oncologist having entered the private medicine world, trying to get to the bottom of it, even though I was in and out of the national health service hospitals too right at the beginning and in between this time. This turned out to be a big mistake. The oncologist who was not a haematologist, which I now know was a big error since he was a general oncologist not a specialist in my type, treated me at the Lister with a chemo regimen not even used in Hodgkin's at that time by the major cancer establishments. BMOPP/CA 14 cycles of it. The tumours partly shrank (classified as a partial response) but no proper diagnostics like PET scans were used back then as they were in their infancy and not well understood. The CT scan showed that there was still lymph nodes in my mediastinum, so the chemo had not worked sufficiently and radiotherapy was prescribed to sort this out. I should have been given ABVD chemo at the time as that was the stanard protocol, so how this oncologist thought that BMOPP/CA was a good idea, god only knows. He should have been shot! By my second cycle of radiotherapy at the Cromwell hospital I felt like I had been put in the Microwave on full power, I just couldn't take it. I felt something was wrong and called for it to be aborted, which it was. Things went from bad to worse and they told me I now need a stem cell transplant as the Thalium scans showed it was in my bones too from my pelvis to my femur. I went to visit the hospital and room where they would do the Apherisis (spin out the stem cells from my blood) for the transplant and I felt that I was being treated with something so serious in what looked to me like a public coffee room. So I said there was no way I was being treated there. I said to my parents I need to go somewhere where I would be the smallest statistic possible, so where did they do the most stem cell transplants in the world so I would be? The answer back then was the MD Anderson in Houston, Texas.
Having lost tons of weight, 3.5 stone ( 50lbs) from only weighing 11.5 stone (160lbs) in the first place. I was now in a wheelchair, my brother would have to carry me up stairs as I was too weak to climb them and my haemoglobin really low so I was really out of breath. I was in bad situation. I had had night sweats every night where I would literally have to change the sheets twice a night as I would wake up freezing with the sheets completely soaked. Eventually I came across a great Chinese herbalist called Dr Liu who gave me some herbs which got rid of the night sweats and itching by about 85%-90%. If only I had found this recipe earlier and not literally sweated it out for the last 6 months like this. Anyway I found it and i will post the prescription for it here as I kept it and am using it again now. There is no western medicine for night sweats and itching from Hodgkin's as it is systemic and apparently caused by the cytokines in your blood. I was told.
In 2001 I finally went to the MD Anderson were I immediately had to start rescue chemo which was ESHAP, this had some effect but nothing like enough as I needed to get to a remission point before High dose chemo and the Autologous stem cell transplant. With ESHAP failing my doctor decided to try me on a lung cancer combination which was Gemzar and Navelbine. This time it started shrinking rapidly! So I was then on for the springboard chemo and high dose BEAM chemo for the transplant. I had the transplant in June and even after all the treatment the PET scan still showed a hotspot under my right armpit. I was not really clear, but I had had so much treatment they decided not to give me radiotherapy as I was just too weak at this point. I started recovering well and after that 9 month stint in Texas I headed to Australia where I felt it was about time I deserved to recuperate surrounded by beautiful beaches and the sea air. So I learned to kite surf and fish for my supper on the Northern Beaches of Sydney.
By this time I was doing well, at least for 9 months, but then sure as eggs are eggs, that right PET positive hot spot under my armpit came back to haunt me. Without any further tests other than a CT and Gallium scan I proceeded to have radiotherapy locally to that spot and sure enough, Hodgkins being known for being super sensitive to radiotherapy, the treatment killed it off there and once again I was clear. No hair has grown under my armpit ever since!
Having then setup my London business in North Sydney, and after another 6 months or so back it came again, this time in my chest (the mediastinum). This time the Australian doctor told me there was nothing he could do, and he said I should go back to the MD Anderson in the USA. In the meantime I tried every alternative therapy I could find. I went to Melbourne trying ozone therapy, radiowave therapy, Vit C, B12 therapy you name it I tried it but nothing worked.
I went over to the MD Anderson and had a biopsy and sure enough it was back aggressively in the chest. At that time the Memorial Sloane Kettering in New York had a clinical trial on for an AntiCD30 monoclonal antibody which sounded promising though there were no real results yet. I wanted to try this antibody instead of chemo, being less toxic and targeted, so I elected to go to NY for 3 months to try the drug. I was getting really weak again and all the old symptoms of night sweats and itching returned with weight loss. The drug in NY was not working at all and I was getting weakened by the treatment not improving at all. I was kind of saved at this point by Dr William Cai in Midtown East NY, a master of some crazy chinese martial art I hadn't heard of and acupuncture at his little place on 141 E 55th Street NYC. He helped me enormously with his amazing acupuncture and healing massage (tui na) which seemed so quick you couldn't imagine it doing anything, but the converse was true. He was my life saver at this point giving me enough energy to keep going. With Hodgkin's in traditional chinese medicine (TCM) philosophy we HD patients have the symptoms that in TCM are Yin vacuity, or known otherwise as Vacuity-Heat. The heat in the body is part of the problem and what we have to avoid and re-balance. So basically no spicy chilli foods for example, but warm is ok, as it is specifically not hot, so having ginger which is warm is fine, like in a juice.
I got back to the UK running out of ideas, I reluctantly went to the Marsden in Sutton needing a transfusion as I was so anaemic, and began some attempted rescue chemotherapy - more Gemcitabene (Gemzar) without any effect, this time I was literally now being strangled by a lymph node by my windpipe. I was having blood transfusions regularly as my HGb was so low I just had to have them. I needed them in NYC as well. They told me about their plans for radiotherapy to the mediastinum and told me that I would lose a lot of lung function to my right lung as a result of the treatment. This time I knew i was in freefall palliative care and this was never going to help me and I would die if I stayed at the Marsden.
At this time I still had an MSN group for Hodgkin's disease as I had always tried to help others with this wretched disease as I knew if I put it out there somehow it may come back to me. Sure enough it was about to. A lady called Claire Mason from NSW Australia was on my website and said to me I am going to a klinik in Germany with my doctor, I'll let you know how it goes; 6 weeks later she messages me again on my forum and says she is in remission and that she has had minimal chemo, with hyperthermia treatment and some complimentary therapies. She said to me just get yourself here. Those words were all I needed to hear.
So I did in June of 2004. I saw the late Herr Dr Dr Albert Scheller in Bavaria, Germany, with all my records my mother could muster and get copies, no mean feat. He was sure he knew why my treatments were not working and since he had 5 degrees including microbiology, chemistry and doctor of medicine, this guy understood stuff at the cellular level and offered personalised medicine tailored for his patients by him and his team including Dr U.Jacob. Dr Scheller sent my blood off to RGCC, a genetic cancer research lab, run by Dr Papasotiriou in Greece for some molecular blood testing (chemosensitivity and micro circulating tumour cell identification, counting and testing) and said he would see what he could come up with. I was still having palliative treatment at the Royal Marsden and had trouble persuading the Klinik in Germany to take me on as I was just so ill that they were really not sure they could or would help me. Eventually my mother persuaded by pleading with them to take me and I duly arrived in a parlour state by wheelchair once again. The team told my mother, "if he survives the night we will get to work on him". My mother told them after I told her to pass on to them, to just give me massive amounts of steroids as this has worked before and she said this would buy us time while they work out what to do. Indeed it did. They chose chemos that I was sensitive to according to the RGCC report and pack me off daily to a 3D Radiotherapy centre in Weilheim. All was going well the tumours were shrinking fast, I was on a low dose chemo and having local hyperthermia to the liver area where I had a large node around the portal vein. Then one Sunday a doctor came into my room and said, "Oliver, I am terribly sorry but we have to stop your treatment, your bone marrow has run out". I said "no way! you have to go on, surely you can?. I telephoned Dr Scheller immediately and told him the predicament I was in and he asked me if I could get my old stem cells from the MD Anderson in the USA, and I said yes I could, but we both knew where that was heading, that was just putting off the inevitable. It didn't work last time, they were likely to contain about 3% cancer cells. He said leave it with him. The next day he phoned me in my room to say, "Oliver I have some cells on a plane from Berlin University they will be here tomorrow".
Sure enough they were, and with one simple injection into a vein in the arm, a vial of 70 million stem cells, 1 million cells for every kilo I weighed (70kg) were given to me. I had received 70 million purified embryonic-like stem cells. No chance of GVHD like you get with allogeneic transplants. Absolutely amazing. My bone marrow regrew in just a single fortnight and I continued on with the current treatment regime and within just 2 months of being there I was in full imaging remission. The malignant cells could still be found in my blood but the tumours had gone from "view". So now the final measure, they added in Rituximab, an antiCD20 antibody to my treatment as the last "curative" piece of the puzzle, as unlike the Marsden and the MD Anderson a Norwegian pathologist and a German pathologist, who got to retest my biopsy, both found my Hodgkins to be CD20+. Apparently this is now found to be the case in 25% of all Hodgkin's disease patients. However incredibly and shockingly the Marsden still have not found this with their immunophenotyping of my biopsies. Why? I have absolutely no idea. It became a story of stories my survival and success with the stem cells. I was even put in a documentary on German television. I had been treated with celebrity Hollywood royalty while I was there too.
My doctor and I decided that I should have the Rituximab also known as Mabthera and Rituxan now, and also have it prophylactically each year. I did continue to have the Rituximab prophylactically but just for the next 3 years following 2005. In 2008 I was still in full remission and was in full remission right up to this year 2013, so eight years of full remission with all that treatment behind me and being given a terminal prognosis and before that just a 5% survival rate for my transplant in the states. Well it seems to all boil down to these B cells that the Rituxumab and in hind sight I should have continued to have the prophylactic treatment as Hodgkin's is a cancer of the B cells and thought to be malignant progenitor or mature B cells. So my theory was knock out the B cells with Rituxiumab for life and no Hodgkin's - seems logical right. One problem the NHS in the UK and Roche themselves have not had Rituxumab approved for Hodgkin's. Why the hell not?? It seems that some trial data has either gone horribly wrong somewhere or someone isn't awake and smelling the coffee. It is my aim to get this overturned and I'm sure it will be with more trials now restarting.
My circulating tumour cells found in the blood by RGCC clearly show I am CD30+, CD15+ and CD20 positive. I know what worked before and the logic is simple.
Now with all this treatment, it seems logical to me that if you wipe out the CD19 (B cell colony) cells in your body you can't get Hodgkin's. As a result of wiping them out with Rituximab I no longer produce IgG immunoglobulin, so I have to have IgG sub-cutaneously injected weekly to ten days, 1ml for every kilo I weigh based on the deficiency. So 70ml 1x per week. This dosage gives me normal immunity with some propensity to getting sinus and lung infections as a result of the weakened immunity and previous treatment and infections partly damaging some bronchi in my lungs. I have full lung function but lose some oxygen somehow I don't understand but not due to tissue damage, as the radiation treatment I had in Germany did not ruin my lungs like it would have at the Marsden back then, I had 3D radiation which was state of the art then and now superseded by IMRT.
The Royal Marsden under Prof C in London have offered my Brentuximab Vedotin, which I researched before my appointment with them and seems a very promising antibody for relapsed Hodgkin's patients now. I have rejected both a bone marrow biopsy, as they have always been negative before, and I have refused an allogeneic transplant, because that seems to me completely unnecessary and pointless given my previous treatment success with 8 years remission and no complications from the purified ESCs. I have told them I want Rituximab as belt and braces treatment and prophylactically given my previous success. This has been rejected by the Prof since it is not approved in my disease - typical, the Prof said this 9 years ago in 2004 and nothing has changed. So I'm going to see how far I can push to get this in the UK if my strength is up to it. It is now. I'm in good condition although have lost some weight, not too much to worry about. I am back on my chinese herbs which have already sorted out my itching in just 48 hours and the early localised night sweating I was getting, I will post my chinese prescription here for anyone that wants it. My May 2013 RGCC blood test showed I am resistant to most chemos now except for the platinum ones which can wipe out your fertility so I'm reluctant to go the chemo route anymore. I'll try and post my RGCC reports so you can see what info I can get that most people can only dream of getting in advance of receiving treatment, so you don't waste precious time and chances having the wrong chemo treatment.
The long and the short of it is now I am in control of my treatment, controls and options all the way and I am not letting the doctors choose for me as I know myself and my disease better than they do. I am hoping I continue to make the right decisions, anything is better than just theirs as my story attests, so far. Fingers crossed!
