Posted by 9 Year 13 July +3,284 days REMISSION
This is a long overdue article.. I’ve tried writing 5 separate articles since January but the editor failed them (me). But this one will be published as it contains links to vital newly released documents from EHA (European hematology association) and The Lymphoma Coalition. I will end with some of my own personal stuff and medical updates. but it depend on how many edits I do
The Lymphoma Coalition
In late 2024 I was invited to join the Coalition as a volunteer to share my experiences with Hodgkins Lymphoma treatment. Shortly after that I was asked if I would represent The Coalition as a patient advocate to a newly formed expert medical panel with the EHA (European Hematology Association), this panel was appointed to create the “EHA clinical practice guideline for Hodgkin lymphoma: diagnosis, treatment and follow-up” I felt honored to be accepted into this expert panel. The first meeting was in April 2025 and the participants were split into various working groups to which I volunteered to work with all the study groups. We managed to create an initial draft by September 2025.
Over the time spent getting used to understanding each step and researching various chemotherapy (which I needed to do to keep up with these expert professors) The Coalition also invited me to join the Lymphoma and CLL Virtual Community Advisory Board called CAB in May 2025, this was a board of fellow advocates who were focused on presenting their experience with their medical care throughout therapy and it was a real eye opener for me, in particular how levels of care varied from country to country and listening to some of the experiences these patients had over their treatment. The CAB had representatives from multiple parts of Europe and beyond. All topics were carefully noted and compiled into using with the EHA. Along with this I had been informed in April 2025 during a meeting with my own hematologist when I was questioning why blood test for Lymphoma needed to be viewed by using multiple types of test like ESR LDH and white cell counts, he informed me that he was currently studying a new blood test called TARC and explained that even if he was presented with DNA proof of Lymphoma he could not use either as they were not clinically recognized as diagnostic tools. This really caught my interest so I went researching TARC and thankfully the DNA was already set out for me by one of our co-writers Dale Atkinson which is included in the article he wrote last year for us https://hlai.blog/2025/04/22/cancer-warrior-dale-2025-stage-iv-oesophageal-cancer-how-i-took-control-of-my-cancer/
TARC took a lot of work and I present the findings I had researched, thankfully the EHA have included both TARC and DNA testing into forms of diagnostic. Oncologist and hematologist can now use these to commence diagnosing patients. The hope is that greater use of TARC testing will help advance understanding of how good this test is not only in diagnosis but also in the long term treatment and monitoring of HLD. It is a massive leap forward and TARC in testing has been able to detect Lymphoma years before it becomes an issue, In so many ways this test could be as valuable as PSA testing in prostate cancer.
Why is TARC important ? Getting TARC mentioned in guidelines means that it is recognized as a diagnostic tool. Medical professionals can now use this document to push hospital laboratories to get the kits to analyze TARC (Thymus and activation-regulated chemokine (TARC; CCL17) is a T-helper-2 chemokine that reflects atopic dermatitis (AD) disease activity. Since 2008, serum TARC levels have been commercially measured in Japan, and clinical experience has shown the usefulness of TARC) in my case as a patient now approaching 9 years in remission this test would have seriously saved so many other scans that needed to be used to verify remission/relapse months ahead of the waiting time for certain scans and the best example I can give was for last year, my ESR blood test had spiked at 95 mm/hr and was well above the higher level of 15 mm/hr, that was January and it took until June to discover that the ESR increase was related to kidney stone and not lymphoma. That took 6 months and a few CT Scans to confirm. ESR An erythrocyte sedimentationrate is a test that can show if you have inflammation in your body. Where TARC is specific to Lymphoma. To be fair this is going to take years to get to define how good this test really is as it needs to be used internationally and documented to refine medical use of the test but “Mighty oaks from little acorns grow”. The EHA will be conducting extensive test to include TARC and it was vital to get the first step into planting the acorn..
I got TARC and DNA included in the EHA guidelines publish in June 2026
https://onlinelibrary.wiley.com/doi/epdf/10.1002/hem3.70422
The coalition also teamed with the EHA to release a patient friendly version of the procedure
https://lymphomacoalition.org/diffuse-large-b-cell-lymphoma-dlbcl/
This is a fantastic piece for Lymphoma Large B cell patients
But I do need to move on in this article as it is covering multiple topics.
Results of an ultrasound last Wednesday now in following a phone call with GP. Two issues
Triple A ( abdominal aortic aneurysm ) has got worse and may now require surgery. Hoping that they decide it’s still possible to place a stent in but most likely an operation. GP already sent an urgent request to a vascular surgeon in local hospital.
Kidney Stone- as always my old friends have appeared but need a CT Scan to confirm size but ultrasound estimated at 1cm.Thankfully I have an excellent urologist team and I suspect a CT scan date fast
The Abdominal Aortic Aneurysm is a big concern as it could mean major surgery but can’t be treated with medication
Good part is that the lymph nodes are all normal
And as the title suggests I am now days away from my 9 Year 13 July +3,284 days
Diagnosed in 2014 as Stage 4 A Large B cell liver and lungs
Back in 2014 I had no idea what Lymphoma was and when I was diagnosed it was at an advanced level, basically it had spread from the lymph nodes into my liver and right lung, From the start it was a challenge for the medical team 14th February 2014 at 52 I had no idea what I was facing and the chances of surviving were low by December 2014 following chemotherapy and radiotherapy I was placed as Terminal Stage 4 with 6 weeks to live, but managed to survive and placed in remission in 2016 (the buildup to this remission took nearly a year and included multiple surgery and scans)
Relapsed in 2017 as Stage 4 multiple lymphoma and terminal with 3 months to live
I was accepted into a clinic trial nearly immediately in 2017 and underwent a Stem Cell Transplant but due to delays in finding a suitable donor I became a self donor, which meant a very aggressive chemotherapy called I.C.E. to basically wash my blood and produce clean stem cells, this was very successful and in June 2017 I had a Stem Cell Harvest. This was the first step in the transplant and prior to reintroducing the cells they were scanned and checked but as there were 50 million cells involved only a small number were check, part hope that the remaining cells were clear of any cancer cells. In July 2017 I was admitted into a special care unit in Dublin and an even more aggressive chemotherapy was used called B.E.A.M. prior to the transplant. The transplant was performed on 13th July 2017 and was nearly a hit and miss but it did work and I had to wait 100 days for a scan to determine how things were. Basically by March 2018 I was confirmed as back in remission.
How many years remission ?
Up to February 2026 prior to meeting my oncologist I was confirmed as 8 years in remission, couple of scares over those years but 8 years. For most cancer patients there is a 5 year remission period before NED (No evidence of disease) but for advance relapsed stem cell patients it’s a 10 year monitoring. I entered the oncologist office expecting to be confirmed as 8 years however he relooked at everything and decide to change the time element – so instead of taking the years from official date of remission which was nearly a year after treatment he decided to go from last day of treatment 13th July 2017 – now nearly 9 years 3,275 days in remission, the day following treatment is classed a day one. So the reality is that after 12 years battling I am now officially 9 years in remission and have commenced the build up to a 10 year all clear or cancer clear,
But unfortunately the long term effects of aggressive treatment at this level produces other issues and I had some underline medical issues prior to 2014 so they are all been currently examined, some of the long term effects have become dangerous and I shall endeavour to explain:
Kidney Stones (renal calculus) These nasty little buggers were first discovered in 1992 and I have had on average 30 stones every month since- but I only needed medical intervention a handful of times since 1992. Until 2025 when the stones started to create multiple UTI’s and my newly appointed Urologist decide to remove a stone that has been imbedded in my left kidney since about 1994, this stone was large and measured over 3.5cm it had become dislodged and would have been impossible to pass. The operation was in August 2025 and called a PCNL, they successfully broke up the stone and sent the samples for analyses and my Urologist referred me to his Nephrologists this specialist looks at the prevention management of stones. And what an incredible doctor, the consultation took nearly an hour and included a full physical. He then sent a two page letter to my GP to arrange various test and scans. This also included issues outside of the stones which I will talk about next. Currently as I write this article I am in the middle of a 48 hour urine collection, this is where I trap urine throughout the 48 hours and once finished the samples will be analyzed and determined to focus on changing diet or introducing medication to control the development of stones. I had an ultrasound last week for a different issue and the detected a 1cm stone developing again in my left kidney which I am awaiting an answer from the Urologist to see if he is going to do another intervention but most likely I will have a CT Scan to get a better image of this stone. The hope is that they can remove it with a ureteroscopy as against major surgery like the PCNL last year.
That’s actually not what the scan was for: during my initial chemotherapy in 2014 I had a PET Scan which showed a AAA (abdominal aortic aneurysm) This was seen as small at 3cm but needed to be monitored there is no evidence to suggest that this was caused by treatment but it never appeared in any scan prior I had listed this as the next issue to address when we moved to Donegal from Galway as the kidney stone operation and the HLD were a prime concern last year. My PET Scan in November showed the AAA had expanded to 4.8 and I discussed this with our new GP here in Donegal. We have been extremely lucky with GP’s and this new GP is very efficient. When I first met him in February I listed the AAA as needed to be check. However the following week I met my new Nephrologists and during the physical exam he was concerned as he could feel the AAA pulsing beside my stomach without apply pressure and made a clear note on his report to my GP that this need to be checked urgently. And that urgency happened last week with a private scanning unit. The sent an urgent report that afternoon to the GP and got the first alert the following day. The aneurysm was now at 5.3 which is .1 below the surgical intervention guidelines. I am now been referred to a vascular surgeon in our local hospital to meet and decide what to do. This is a serious situation as the AAA has increased from 4.8 to 5.3 in 6 months. However these scans can vary due to multiple issues and the scan is basically a guideline for the surgeon. The recommended procedure will most likely be a CT Scan which can also show the stone size.
How do I feel about all that ? Honest answer is I’m pissed off with medical issue they are seriously destroying my life. I tackle one issue only to find more issues following it, each seem to be more dangerous than the last, my mental health and finances are no longer struggling but completely fuck (excuse the colourful language). What I am now looking at this year is medical intervention to the kidney with either a scope or another PCNL plus an operation on the aneurysm which is still to be decided. Aneurysm’s can in some cases be treated with graft stents but they tend to be only a temporary fix the full fix is open surgery which is substantial as it requires cutting into the area to repair. I have researched both and as always there are too many opions about this. The graft procedure is via a vein in the groin and this would be my preference but that will be a discussion with the surgeon. It does feel that the devil is knocking at the door again, my last visit to hell was enough to discourage any repeat visits. A full operation would mean up to two weeks in hospital and three months recovery, I don’t need this in my life not now and not ever. But let’s wait and see.
All of this lands us back in financial difficulty and no end in sight. We sold our house in Kerry to recover financial cost occurred since diagnosiced 2014 and bought the house in Galway which require a total renovation, we were then pushed into a position to sell that house and we purchased in Donegal and yet again I could be facing another sale early next year on this house, it trying to stay fit enough to do all the renovations and improvements to get a reasonable return. This one is a risk but we have already had a number of interested buyers – I have a good reputation for renovations and my portfolio has shown this work over the years, however I do need to fit enough to do the work myself. So a full list of questions for the vascular surgeon and we will see what he thinks but I am including both my urology and oncology teams in the decision making. The Nephrologists mentioned that my fitness level for a 64 year old is unusual and that the lack of fat on my abdominals would really help with any procedure. Nice to hear. On the plus side the GP also wanted a lung test done as part of the buildup to my final remission year and I have the lung capacity of a 54 year old, which was a surprise as I almost lost my right lung due to the initial lymphoma attack and damage caused from ABVD Chemotherapy. So I am getting conflicting views here, I have doctors telling me how fit I am especially following all the aggressive therapies over the past 12 years, but then I get a list of dangerous conditions that I have to now face. Remaining test include Echo heart scan and CT Scans. Also I expect that blood pressure tablets I have been on since 2022 will be increased to insure that the pressure on the AAA is reduced.
Just an update prior to posting. I have taken a call today 2/7/26 from a vascular surgeon to attend a aorta doppler ultrasound protocol – this is a more advanced ultrasound that measured the blood flow in the area with a meeting organized for immediately after the scan. The scan is in Galway so a 4 hour drive to get there – the last time I drove down the AAA was pulsing hard and could be felt with slightest touch.
To pick up from last year and
The sudden Passing of my older brother his years anniversary in June 28, I have added this to my medical file to be checked annually- sudden heart failure
Needs to be monitored especially as a genetic level. My blood pressure has been monitored since first chemo 2014 and more is relapse 2917 finally resulting in a low dose blood pressure medication which I’m now more than thankfully for as this eases blood pressure on the AAA. But the loss of my 4 year older brother stills sits heavy on me. We had not spoken since my Mum passed in 2018 as we had a fall out a number of years prior. But a brother is a brother and in so many ways it is a shame that we never sorted our personal problems – maybe in the next life.
Anita
Unfortunately we have a tendency to do all things medical at the same time. Last year was a difficult one for Anita. The week of the sale of our house in Galway Anita’s bladder basically deflated and required urgent A&E admission, took 4 days to stabilize and gave us both quite a shock. Anita has a long term bladder issue and receives botox injections to regulate the bladder every 6 months but this seemed to have the opposite effect last year – however she had the procedure again 4 weeks ago and it seemed to work well. However we had to visit a local A&E due to extreme abdominal pain which was similar to a pain that had her admitted to hospital in 2019, following a visit to our GP he decided the area was too tender and needed to be scanned properly – in 2019 it was a suspected gallbladder issue, but after 14 hours in A&E she was sent home with antibiotics and anti inflammatory medication, the ER doctor was unable to read the ultrasound so we had to book Anita into a private clinic and are currently awaiting results.
What a couple of crocks we are!
In so many ways I am not surprised, every time we try to plan something we get hit left right and centre – the something in particular is our wedding. We had looked at this in late 2013 but when I was diagnosed in 2014 we put everything off. Our next considered arrangement was just before Covid in 2019 and again we put off making a date. Last year we decide to try again and even got to the point of having Anita fly to the UK to look for a wedding dress which her wonderful Mum bought her, with our latest move to Donegal we have been slow at organizing the wedding. In Ireland we have to apply for a license which must include the date and location with 3 months notice. Currently we get concerned about making plans for the following week so 3 months is like a fiction date. When we lived in Galway we had selected a venue and had requested a meeting with the local parish priest who never responded. So my next move is to locate our new parish priest and try to meet him to discuss dates but I would like to get the AAA issue resolved or planned before doing this.
Galway to Donegal
There are 4 provinces in Ireland: Leinster, Munster, Connacht, and Ulster .And we have now lived in each of them. Where Counties are involved we have lived in Co Dublin, Co Cork, Co Kerry, Co Galway Co Roscommon and now Co Donegal, but still on the southern side of the boarder. Its basically from one end of Ireland to the other.
We had originally met in Lanzarotte back in 2000 and when I returned to Ireland in November 2004 we lived in Dublin for a few months and moved to Cork. From Cork we decided to move to Kerry, however after some excessive expenses we had to sell the house and found a renovation project in North Galway and again when I had completed the renovations we were struggling again and sold, I seriously loved that house as we had renovated the entire building to exactly what we wanted. We then rented a bungalow in Roscommon which was a major mistake as the land lord refused to refund the deposit but the bungalow was cold and in poor condition so we had stepped up our search for another property finally finding a beautiful house in East Donegal. We moved up in mid February and it was a challenge again as the drive was over 4 hours from the rental. All our belongings and furniture were in two storage units in Co Mayo and typical of me I went flat out to move, took a week and that driving was in winter weather some 245klms in distance.
My Dad was actually raised less than 5klms from this house and I had spent summer childhood holidays up here. So it was a type of home from home for me. The scenery locally is to say the least magnificent and the house itself presents well but there are a number of projects to do in it. We are also preparing to look at selling again in 2027, this year has been expensive medically and the bills are mounting – its not just the cost of living it’s the cost of staying alive medically. Since 2014 cancer has cost me in excess of €45,000 (one of the hidden cost of battling cancer) That’s roughly €3,750 a year and so far in 2026 we have nearly doubled that figure to €7,500. And today I received the appointment date for the scan and meeting with the surgeon – the scan is €88 and the consultant €300 CASH (My private medical insurance does not cover these cost and if I went public care it could take two years to get to meet one, two years at the rate of increase would be dangerours to say the least) it is a struggle to make ends meet. Ireland is now one of the most expensive countries in the EU to live in and for people on disability payments it’s nearly impossible, the saving grace is that we own our home rent free and mortgage free, without that we would be definitely homeless by now. Not sure how many readers we have from Ireland that have found weekly shopping increase dramatically over the past year ?. And on the subject of readers we now have exceeded the 70,000 viewers target and intend pushing the site further over the next few months.
This was a difficult article to write as it feels like a rollercoaster again, 9 years in remission from any Stage 4 Cancer is a milestone and if I can get the remaining issues resolved I would feel in such a great position.
As part of our push to create awareness to other forms of Cancer one of our authors Alan Morton (who urged me to publish this article) Also like Dale have helped in so many ways and push awareness
Petition: Introduce a screening programme for prostate cancer, starting with high-risk men
We are calling on the Government to reassess the UK National Screening Committee’s (UK NSC) draft recommendation not to offer prostate cancer screening to anyone except men with BRCA1/2 genetic variants, and to introduce screening for all high-risk men.
https://petition.parliament.uk/petitions/751472
If you reside in the UK please sign this Petition
Self Patient Advocate
Our new world of medicine has advanced well, less paperwork, online assessment, and Professor Google to answer questions which can include AI answers. But it can also mean patients “slip through the net”. My personal experience has been that I constantly need to push for answers. Prior to medical meetings I research everything and list questions that I feel are necessary, this has been my approach from 2014 – we need to understand what the doctors are saying or in some ways what they might be missing. If I doubt or don’t understand any comment I ask them to repeat the answer and in some cases I ask for an explanation. I also take notes during meetings and where possible I have Anita with me. During the draft of the EHA publication I spent days researching different types of drugs and approaches that were discussed. I also try to understand other forms of Cancer as we get a lot of patients asking questions that basically are not Hodgkin’s victims. The big part of what we try to do is understand the effects of chemotherapy and the long term effects, most of these effects are very similar with every form of Cancer treatment. This is why I keep this blog site active and intend to continue pushing it as much as possible. And we continue to look for a sponsor for the site unfortunately this request can lead to massive spams hitting us. If any of our followers can help it would be great and if anyone can make suggestions to help us financially it would be very much appreciated
Hodgkin’s Lymphoma Awareness Ireland 