Diagnosed Hodgkins Lymphoma Stage 4B 14th Feb 2014
ABVD Chemotherapy March 2014 to August 2014
Radiotherapy 40Gml over 4 weeks November 2014 to December 2014
Long gaps between test but generally non conclusive including 3 biopsies to throat and neck.
In November 2016 I had a routine scan to see how the Hodgkins Lymphoma was going they discovered a new site below the centre of my back close to spine. Due to multiple kidney stones in the left kidney (I have had reoccurring stones for over 25 years and average 10 stones a month, they are rarely painful) two of the stones appeared trapped so I had to see my Urologist but the Oncologist warned me that the Hodgkins was definitely a treat. The Urologist ordered an emergency CT Scan (my second in Nov) I met him the next day for my results. The news was bad and he wanted me in hospital with 24 hours for surgery. I told him that I felt I had passed a large proportion of the stone and following a urine test he confirmed a start UTI. So he basically informed me that he may have to remove the kidney and to come back in prepared for a long stay in hospital. So with this news and the pending bad prognoses on Hodgkins I liquidated my business, handed the customers to what ended up been a back stabbing company. But I needed to dedicate 100% to what was facing me.
Two days later 23rd Nov 2016 I went for my third CT Scan in 3 weeks, I then went to the Urologist room. At 2pm he came in and smiled, it appeared that I had successfully passed a substantial amount of stones and the left kidney was clear but infected. So he wrote a prescription for strong antibiotics and sent me home.
I had to wait a week to visit the Oncologist because he couldn’t do anything while I was on the antibiotics. Cutting this end short a little, I got a bad chest infection the week after that took all of December to clear. However they continued to scan me weekly (basic CT) but I was left without any solid results.
22/12/2016 My Oncologist phoned me and told me he was placing me into temporary remission, pending a CT N-TAP scan in Feb 2017. What a fantastic Christmas present. Until we got the results on the 14/02/2017 (3 years to the date of been diagnosed) the site that concerned the medical team had shown up again. They decided to do a biopsy and a PET scan. The biopsy was done two weeks later, a rather gruesome procedure. Samples were sent to various labs with about 7 days before results would come back. So had PET scan 27 March 2017 and met the oncologist 29 March 2017
The news was bad. All 12 samples taken were positive for Hodgkins both non Hodgkins and Hodgkins. A team of specialist had a conference via Skype and decided that this was life treating. Urgent medical intervention was to commence with the following:
3 cycles of R-ICE chemotherapy followed by a Stem Cell harvest, followed by BEAM Chemotherapy followed by Stem Cell Transplant.
This task is so big it had to be handled by two hospitals and two full Oncology teams one based in Cork (where I live) Bon Secours and the second based in Dublin (167 miles away) St James. St James took the lead in all procedures.
Ice Chemo is designed to kill all cancer cells in the blood, plus white cells, stem cells and production of stem cells. I will go under 3 cycles, each cycle takes 3 days in hospital followed by 18 days of no Chemo then cycle 2 18 days of no Chemo then cycle 3
Admitted to hospital the day before chemo 9th April 2017 for blood test urine test etc. Got good to go ahead and commence Monday at 11am 10th April 2017. Had a PICC line surgically placed into my left arm (this is basically a long tube inserted into a vein that ends up close to your heart.) a discomforting procedure that takes about 40 minutes from start to finish.
Then back to the room to commence. Firstly I got an anti nausea injection to cover 3 days. Then two small bags of steroids followed by a 3 hour infusion of Etoposide (the E in ICE) followed by 1 hour Carboplatin (the C in Ice) and that was it for day one. All was good, drank about 3 ltrs of water and slept well that night. I was aware what day 2 would bring. Due to the server level of Chemo the medical team had to tackle protecting my kidneys and my bladder (known side effect is server bladder damage) So I had 2 hours of Mensa followed by 24 hours of Ifosfamide (the I in Ice) and 24 hours of Mensa at the same time. To say I did not sleep that night means I stayed awake. So the 24 hours commenced at about 3pm Tuesday and ended at 3:30pm Wed – followed immeadiately by 2 hours of Etoposide. I then has infusions every 3 hours for 20 minutes a total of 9 hours.
So Thursday 13th my doctors came to see me. They were more than happy with me. Apart from elevated blood sugar (Previous chemo resulted in becoming Type 2 insulin depended diabetic, cured myself of that in Oct 2015). Constipation that they felt was mild. But good to go home.
PICC Line was removed as risk of infection too high. Lots of warning about blood sugar levels, temperature, high risk of infections, server constipation and a lot more.
Before leaving the hospital my liaison cancer nurse came in and went through everything that was going to happen. And of course a multiple list of medication.
The medication included an 8 day self injection course of Neupogen GSF – these injections stimulate new stem cell production at an accelerated rate – self administered (not a problem after been a diabetic for over a year) – stomach tablets, anti nausea tablets, anti biotic to protect lungs, kidney tablets and a number of viral protect tablets
And the planned next visit 1st of May 2017 for admission (18 days from last date) to commence Cycle 2 over 3 day from 2nd May.
Appointment for PET Scan set 15th May 2017. Followed by meeting on 23rd May in St James team in Dublin (lead team for Stem Cell)
Appointment set for final ICE Cycle 3 to commence 24th May.
Appointment set for Stem Cell harvest 6th of June 2017
ALL Dates subject to change.
So finally released on Thursday 13th of April after Cycle 1. Got home and felt the old familiar feeling of fatigue. I had fatigue after ABVD and once you have experienced chemotherapy fatigue then you will know whats its like. But the fatigue from ICE is about 100 times worse. However I managed it, went to bed when I felt it coming got back up as it eased back. Then the injections of Neupogen GSF and yes it causes bone pains and lots of them, properly every bone in the body. Other side effects included Peripheral Neuropathy (sensation of numbness and tingling in hands and feet) this never fully went after ABVD but it did get more server for the week after ICE. Temperament was not good but could be controlled. Found it extremely difficult to sleep. But that was about it. I was capable of walking, driving and cooking.
As I have decided to write this as a day to day experience then today is Thursday 27th of April. 5 days left before I start all over again
I have a Go Fund Me donation site available. If at all possible could you please leave a small donation. If every person that has read my blog left just €3 as a donation it would clear all medical bills to date Over 6,000 people have viewed the site to date.
(Update: unfortunately the Go Fund Me account will only accept a min donation of €5).