Ok, so grab a bottle of Single Malt, get a comfortable seat and let the journey commence.
1976 - Allergy related Asthma
1999 - Primary Continuous T Cell Lymphoma (CTCL)
2010 - Thoratic & Lumber Spondylosis - Spinal Osteoarthritis
2012 - Pleural Thickening and Pleural Plaque (Right Lung) - Asbestosis
This one came out of the blue. I was getting CT scans every year to check for any progression of my CTCL and my Dermatologist was reviewing my CT report and said 'everything is looking great and you will know that you have Asbestosis in your right lung?'....... after a long silence I said 'I do now'..... It turns out that my last 3 or 4 CT scans showed it up but it never filtered through to me. I was referred to Respiratory but as my Respiratory Consultant is a very good friend I got some 'mates rates' and was fast tracked. I had a CT guided Lung Biopsy - of all the things I have had and went on to have this was the WORST EXPERIENCE EVER. But the results were ok and I did not have Malignant Mesothelioma but would have yearly checks and after a lung function test I was told my lung function was 15-20% lower than it should be.
2013 - Medically induced hearing loss due to medication used for Lymphoma treatment. Right Ear 85% loss with remaining 15% a muffled sound with continues pulsing 24/7 and Left Ear 50 – 60% loss + Tinnitus.
So in 1999 my NHL journey commenced. After 9 months of investigations by my GP and a year of attending Dermatology with lots of blood tests, 7 biopsies and a few CTs. I was eventually diagnosed with CTCL a rare type of NHL - Non Hodgkins Lymphoma (Mycosis Fungodes). For 14 years the condition looked like I had very bad Psoriasis and I often had a 70% body coverage. My condition moved through all the stages up to 4a2, the stages are sometimes called the Premycotic, Mycotic and finally Tumorous.
My Dermatologist told me “Mike there is no curse and you are living with a time bomb that does not have a countdown clock and one day the bomb will go off and become life threatening” So I parked these thoughts and lived, worked and enjoyed life throughout these 14 years - it never held me back.
I had lots of treatments over these 14 years including various steroid creams, 20 weeks every year (2/3 times a week) for UVB then PUVA light treatments - I must have had 900+ visits to Dermatology for clinics and light treatments. One time I did end up with 2nd degree burns on my bum as the PUVA machine did not switch off but the member of staff thankfully noticed so she switched it off. It was only 4/5 seconds but the damage was done. For these 14 years I had to ware special padded dressings over all the tumorous areas as the tumors would continually bleed. We went through a new set of bed sheets every night as they would get covered in blood. I also had Interferon alfa (a) injected weekly subcutaneously under all my tumorous areas and various drugs including Acitretin and finally Bexarotene. Bexarotene did a great job but my Cholesterol went up to 12.2 and my Thyroid was closing down so the Bexarotene was reduced and various other drugs were used to get these new issues under control but this allowed my main CTCL to get out of control.
2013 I was fast tracked to Oncology when an aggressive and uncontrollable tumour started to grow on my forehead just above my right eye. As it grew in size it became very difficult to look after or keep a dressing on - it was basically a big bloody mess and when I had a shower it was like a clip from Hitchocoks Film Psycho - the shower clip. Blood everywhere to the point I did not go out and when I did I had to wear a big floppy hat, this was a bad time. It grew in about 4 weeks so by the time I had Radiotherapy, it was the size of a tennis ball and it had attached on to my eye lid closing my eye. I was told it was 50/50 that my right eye could be damaged but I did the 'Man in the Lead Mask" thing, had 5 sessions of Radiotherapy and pow!! it was gone in 5 weeks leaving a little indentation on my forehead. As my Dermatologist said 'I was living with a time bomb' and it had just went off.
2013 August Almost immediately after my Radiotherapy the Lymph-nodes on the left of my neck reacted so I was again fast tracked to Heamatology. I did take a few weeks to get the referral and all the time the Lymph-nodes were getting bigger but eventually the Heamatologyist told me that “your condition is life threatening” and “we can give you about Two and Half years on the clock and the only way forward is 6 Cycles of strong Chemotherapy and a very successful Allo SCT” My Bone Marrow Biopsy was also showing activity in my Bone Marrow.
Game On - so we pulled up our socks, rolled up our sleeves, told all our family and friends and prepared for the fight.
I had a massive biopsy done under a general anaesthetic and by the time I went for my first Chemotherapy it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted - again I was in a bad way.
I had an initial 15min blast of Vincristine and that got me through our family Christmas. It was amazing the difference that first a Chemo blast made to the point I actually had some Christmas dinner, I got my PICC line in then went on to have 6 Cycles of R-EPOCH = (Rituximab + Etoposide, Prednisone, Vincristine (Oncovin), Cyclophosphamide, Doxorubicin (Hydroxydaunomycin) in between December and April. 5 days of 24hour a day continues Chemo. By the end of my 2nd/3rd cycle the swelling was well down. The final cycles were used to further control the condition, I had 720+ hrs of chemo!! I got through the Chemo ok but yes I lost ALL my hair 5 days after the first cycle :(
I did at times feel sick but never was, mainly when taking medication as some of it was rank but most of the time just a bad nausea felling. I did develop Helicobacter Pylori, a bacteria that developed ulcers and stomach inflammation. Up until this time I was doing ok with eating - even hospital food!! The 3 pack antibiotics I was given for the HP were horrendous and put me in bed for a week and I lived on soup, but I got through it.
I asked my very first nurse for some advise for getting through the Chemo and she told me, eat, even when you feel you can't do it try. Sleep when you are tired but keep active, small but often spells of activity. So after every meal I took Laurel and Hardy (my two Chemo pumps) for a walk round the corridors of the ward. It turned out that I was actually doing about 2 miles a day. On the whole the chemo journey was ok and the exercise did help overcome some of the fatigue, sounds so counter intuitive, but exercise does actually it help.
2014 June - I went down to The Beatson West of Scotland Cancer Centre in Glasgow for my first SCT Stem Cell Transplant. I had an (Allo) Allogeneic (blood related 10/10 donor - brother) SCT.
We went down a few weeks before for what we call 'The Talk' where the SCT team unpack what they are going to do to me and also very carefully detail ALL the posable side effects, some of these could turn out to be fatal. I then given a 5 page consent form away to read and if I was willing to go ahead I had to sign it. The form was basically giving the team permission to take me to the point of death and bring me back with a new life.
I had no option so on we went. I went through medical checks to ensure I was fit for the process (mind you we were going ahead regardless) these included Echocardiogram, ECG, Pulmonary Lung test. Dental Examination, blood work and urine tests to measure, blood counts, kidney function, liver function and past exposure to infectious diseases. I also meet with a psychologist to discuss my emotional health as well as a financial counsellor.
The first 2 weeks conditioning followed the Stanford Regime TBI/ATG plan with 10 sessions of TBI (Total Body Irradiation) this had me screwed down on the Radiotherapy table with a neck to hip body mould, this was initially very hard work especially during the hours of the setting up process. The 10 treatments lasted about 30 mins each. It was hard work as I have Spinal Osteoarthritis, but the Radiotherapy itself was ok and I even got myself 6 tattoos!! The 10 treatments lasted about 30 mins each and these were relatively hard work due to the Spinal Osteoarthritis.
I also had a week of Intravenous Conditioning using ATG (anti-thymocyte globulin) and various levels of Chemo to "take down" my immune system. The ATG infusion was basically ok....... but I did have serious quantities of Antihistamine before the ATG as I have various animal allergies and due to my ATG being grown in live rabbits :(
The Antihistamine was so strong I slept through the ATG I did wake up with a lot of head and back pains but the team were on it and after an hour or so all was good.
My cells went in over two sessions and were ok apart from getting the hiccups!!!!!! so they gave me a Blue pill!!!! but it worked :) and after the second batch of cells is started to get shooting pains right up the length of my spine. These pains were every 60secs the nurse said 'you will be having the birthing pains :)' Well that is true as my new self was giving birth. She gave me some Morphine and all was well.
It took two further weeks before my blood counts went up and I eventually get out of hospital. During my 4 weeks I was remarkably healthy, able to eat and only had one small mouth ulcer. I was on various drugs including Cyclosporin for the first 100 days post transplant. I had no GvHD or any other infections. My counts sat at mid 70% so the start of November I got some DLI (Donor Lymphocyte Infusion) to give the counts a boost but by this time my skin was starting to show small lesions. A Chimerism Test and Bone Marrow Biopsy confirmed that I had lost the graft. I actually breezed through my first Allo and my SCT Consultant Team told me that they had been “far to gentle with me”
2015 January - By now my count down clock had 16 months on it. But my MDT team put on maintenance treatment and told to go away and have 8/9 months R&R, build up my strength and prepare for the final round of the battle.
2015 October - The clock now had 8 months on it when I went back to The Beatson for my 2nd Allo SCT and the final roll of the dice. This time they did throw the book at me and I was very, very ill. It started with 3 weeks of Radiotherapy including a FULL Face Mask to ensure every lesion on my body was clean. I then had two weeks of very aggressive conditioning using various Chemo including Melphalan/Fludarabine/Campth where I did the ice pole sucking thing during the Melpalan to stop my mouth turning into one big ulcer!!!!
On the day I got my first batch of Stem Cells an hour later I was very, very sick. I had to be rushed to the ICU as I developed bad A Fib (irregular heartbeat) and the team were very concerned a stroke was on the cards. But I got back to the SCT Unit after a few days had my second batch of Stem Cells then the day after I was re-admitted to ICU again with A Fib. But again after a few days I was back in the SCT Unit. My counts went up and after 2 weeks I went home. One side effect of being sick I did develop "The most impressive Hiatus Hernia" and was not eating. I lived on soups and protein drinks for 3/4 months but in the words of my Consultant Team "Mike, your Hiatus Hernia has remarkably healed it's self without you having surgery” :)
It was a hard 16 months post second Allo. I was walking with walking sticks for three months, could not drive and needed a wheelchair to get me through the hospital to get to clinics. The Fatigue was extreme and I spent lots of time in bed but always got up and had a shower regardless of how I felt. We live 9 - 10 hours round trip away from my SCT Unit so we had to do the journey once a week for the first 4 weeks then moved to every second week then after 2 months on Video Conference…….. t was just hard work.
So between Sep 2013 to January 2018 I have had 115 Days in hospital: 45 Radiotherapy sessions: 800+ hours of Chemo: 2 Allo SCTs: GvHD: 2 Trips to ICU, 4 times back in hospital with Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia, Sepsis and two months of low blood counts caused by GvHD so regular blood transfusions every second week and GvHD of the skin. I have been left with Peripheral Neuropathy in my hands and muscle pain in my neck and legs……… its ben some journey :)
Was it hard work? Yes :(
Was it worth it? Yes :)
Would I do it again? I won't get a third chance :(
2016 September - I AM IN REMISSION
2017 September - First time in 3+ years my Whole Blood Lymphoid and Myeloid Lineages are 100% Donor :)
2018 February - 24 months past the final alarm bell :) :)
