Andy - My HL story

Hey everyone, my name's Andy Nankivell from Bath in England. As with TJ, I have a rather long story about Hodgkins Lymphoma. I was a member of the old forum but I never fully explained everything. I will try and include everything I can remember, I have nothing to be embarassed about, people deserve to know what can happen! As my story is so long and complex I am going to split it up into 2 parts, the first year and the second year.

1st YEAR

I was already half way through my A levels and I was studying Maths, Physics, and Biology. It was the start of the summer holidays in July 2005 when I first discovered a very small lump on the right side of my neck. Of course it was so small that I thought nothing of it, I told my parents and they also believed it was nothing to worry about. After a few weeks a few more lumps had appeared on the same side but lower down towards my collar bone and where getting bigger, at this point I knew the sensible thing to do would be to go and see my GP.

I had a blood test and then returned to my GP about 10 days later for the results. Apparently my CRP (C-Reactive Protein) was high which most likely indicated glandular fever. I accepted this and went home. A few more weeks went by and the lumps got bigger and spread to the left side of my neck and under my right armpit,. I started feeling very fatigued but still kept telling myself it was glandular fever. Then I started getting headaches and night sweats, I was waking up in the middle of the night absolutely dripping with sweat, and my matress absolutely soaked. I went back to the doctors but was seen by a different GP who was concerned by the night sweats and booked me in for some tests at the hospital.

I had more blood tests taken, as well as a sample of the swelling in my neck through a needle and a chest x-ray which was clear! The next day I had a phone call saying I had been booked in for a neck biopsy and that an ENT consultant suspected I had a Lymphoma. At that point I had no idea what this was, I did a bit of research but still did not realise it was a type of cancer. I had the neck biopsy and then returned a week later to be told that I had nodular sclerosing Hodgkins Lymphoma, at this point I learnt that it was a type of cancer but that it could be easily treated with chemotherapy. It was obviously a big shock to me and my family but we were all confident I would get through it! The ENT consultant told me she would be referring me to a Haematologist who would be responsible for my treatment.

So a week later I went to see my new consultant at the Oncology and Haematology department. He examined me and told me I had at least stage 2B disease and would be booking a CT scand to see if it had spread any further. I would be starting 6-8 courses of ABVD chemotherapy depending on response, each course consisting of 2 doses, one every fortnight. I was told that there was at least an 80% chance of long-term disease free survival. My chemotherapy would begin as soon as a had my scan. Of course, the subject of fertility arose, which my specialist Haematolagy nurse discussed with me. I chose to store some samples, which was very unpleasant to do considering my emotions at the time.

I had my scan and proceeded with the treatment at the start of October 2005, the only real side effects I suffered were a very sore mouth and fatigue. I continued going to college to do my studies when I was feeling fit enough. After the first course I returned to clinic to see my consultant who told me my scan had shown wide spread disease. The medical terms I have written down here are: extensive lymphodenopathy in the neck, right axilla, mediastinum, para-cardiac area, spenic hilum, coeliac access and left gastric regions. The mediastinum lymphodenopathy was described as gross and a peri-cardial effusion and multiple lesions in the spleen were also noted. This meant I had stage 3B disease and my consultant was keen for me to have the full 8 courses of ABVD. I was also told that the size of the mediastinum lymphodenopathy needed to be assessed as I might need post-chemotherapy consolidative radiotherapy.

At my next clinic appointment a month later I was told that the mass in my chest was 11cm in diamater so I would need some radiotherapy after my treatment. My blood test also showed neutropenia so my next had to be delayed by a week, and I had to give myself some injections of GCSF to boost my white counts. I had a CT scan in January and it showed I was responding well to the treatment.

It was April by the time I had completed 6 courses and I was suffering badly. I was completely out of breath and was struggling to breath, even after climbing one flight of stairs I was dropping to my knees and panting for breath. i was also having a slight reccurance of night sweats. I returned to see my consultant who immediately sent me to have a chest x-ray and a lung function test. The x-ray showed some shadowing in my chest which my consultantant believed was pulmonary fibrosis being caused by one of my chemotherapy drugs (Bleomycin). He put me on a dose of steroids, booked me for a high resolution CT scan of my chest, and referred me to a respiratory specialist. My 6th course of chemo was postponed, and eventually it was decided that we would omit the bleomycin from the last 2 courses. I also came out in a very nasty rash which a test showed was also down to the bleomycin.

I had my final 2 courses without any problems, I had further lung function tests which returned to normal. I had another CT scan and was then referred to an oncologist to discuss radiotherapy. The scan was relatively clear but I did point out to the oncologist that I could still feel a small lump in my neck. Unfortunately the scan had not covered my neck so he booked for me to have another scan, which showed my neck was clear but that there was now new lymph node mass in my chest and around my heart which was not visible on the previous scan. I returned to see my Haematology consultant who told me it was a possible early relapse and that we needed to obtain some more evidence. But there was no obvious node that could be biopsied so I was booked for a PET scan.

My night sweats had returned again and my appetite was deteriorating. When I returned to my consultant he told me the PET scan was indicative of widespread recurrent active nodal disease above and below the diaphram as well as splenic involvement. I showed him a new lump on my neck and he wanted it immediately biopsied to prove the relapse with definite histology. I was told that I would need salvage chemotherapy to try and get me into remission, or reduce the disease as much as possible. Then proceed to high dose chemotherapy with either an autograft or allograft transplant. The autograft meant returning my own stem cells to me, whilst an allograft meant giving me someone elses stem cells (in other words, a bone marrow transplant). The allograft transplant would give me a better chance of progression free survival. My tissue type was tested and so was my sister's, but she was not a match so I would need an unrelated donor from the bone marrow register.

2nd YEAR

We squeezed in a 2 week holiday to Florida, and when I returned I had the biopsy of my neck, and a bone marrow biopsy. I also had a central line put in as would be requiring extensive chemotherapy and regular blood test and blood products. Then came the day of my first course of my salvage chemotherapy at the start of October 2006. I was due to have 4 courses of ESHAP with each course lasting for 5 days, this meant staying on the cancer ward.

I had the first course without any problems, I left the ward after 5 days and started returning for daily blood checks. But as my white cells dropped I picked up cellulitis in my biopsy site and had to go back to stay on the ward, recieving antibiotics. I fell very ill and unwell, vomiting regulary. I had a very unusual reaction to the antibiotics, the whole right side of my body went completely numb. A CT of my head showed nothing which was a relief. Eventually I was discharged.

I came back for my next course, but on admission I was very unwell, had a fever, and suffering from night sweats, we postponed the chemo for a bit whilst I stayed in to have antibiotics. I was also sent for another CT scan which showed my disease had progressed even further! Therefoer my chemotherapy was changed to mini-BEAM and I was to have 2 courses, each course lasting 6 days. The first course started immediately after I had finished on the antibiotics. But I started to get severe anxiety and was having panic attacks while I was in hospital, I needed some valium to calm me down. I also found I could not go to the toilet and needed a catheter for a bit, which was very unpleasant! At that time I also had to take a trip to Bristol to meet the consultant who would be in charge of my bone marrow transplant. He discussed with me all my treatment options and why it was best for me to have donor transplant rather than having my own stem cell returned. I also got the chance to look around the BMT unit.

Once that course was complete I went back home and again came the daily blood tests. I knew I would have to be very careful as all my blood counts were very low, I hit neutropenia again, and that was when something very scary happened. I went to the ward for a blood transfusion, and the next thing I remembered was waking in a side room feeling very dazed and confused. One of my doctors asked me what month it was, I thought hard and took a guess at October (it was December)! Apparently after the blood transfusion my mum had taken me home and I had gone to bed, but in the morning I was completely delirious and did not know where I was so I was rushed back in. A scan showed an infection on my brain which was immediately treated with broad spectrum antibiotics and steroids. But the possibility of it being cancer could not be ruled out so I had to have an MRI and a lumbar puncture, both of which were clear! I was kept in for a couple of weeks at which point they did another full scan which showed a significant response to the mini-BEAM chemo. I was discharged.

I returned again to have my second course of mini-BEAM over christmas. Everything went smoothly and I was let out again after the 6 days. Daily blood tests again, but this time the moment I went neutropenic I had to stay in hospital for about a week as a caution, we did not want me picking up any more nasty infections. I had another scan and oh dear, no change! We also tried to collect some stem cells as a back up for my transplant, but that was unsuccessful. At that time I was made aware that my Hodgkins would need to show more response to chemotherapy before I could have the transplant.

By this time it was February and this is where things started to get a bit complicated and I cannot fully remember everything that happened. After my blood counts had fully recovered I proceeded to another different type of chemotherapy called GEM, and I was told that this was the last resort and that there were no other types of salvage therapy after this. I was due to have 2 courses of GEM, each course lasting 3 days. I had the first course without out any problem and then came back in once I was neutropenic. But I still picked up an infection, lost my appetite completely, and ended up spending 3 weeks on the ward. Then had my second course, went neutropenic, blah blah blah, had another scan, and oh s***, no response again!!!

This was getting serious and I was immediately summoned back to Bristol to see my transplant consultant again. He discussed with me my options which were not too pleasant. I could have standard chemotherapy to control the cancer but not cure it, which would give me maybe a year or so. Have trial chemotherapy. Or have a tandem transplant, which meant having high dose chemo and my own stem cells returned. Then going on to have a full bone marrow transplant (a matched unrelated donor had been found for me). I knew immediately what I wanted to do, I was going to fight this all the way, no giving up!

Unfortunately I had still not had any stem cells collected so I had a general anaesthetic for a bone marrow harvest. But my bone marrow had suffered so badly from chemotherapy that we got a very poor harvest, not enough. At this point I hit an all time low, I felt there was nothing more that could be done and broke down into tears! I continued picking up infections and spending lots of time in hospital, discharged one day, back in the next! By that time I had become very emotionally attached to all the staff on the ward and recieved lots of care and support from everyone. The nurses would comfort me and reassure me all the time. I have made many friends on that ward who I am still in contact with today.

Then I found out that my transplant consultant wanted to proceed straight to the transplant, but that my donor would not be ready for another month so I would be requiring another dose of GEM to keep the Hodgkins at bay. So at the beginning of July it was time for me leave the ward and head off to Bristol for my transplant. It was a very sad day for me, having to say goodbye to everyone who had looked after me for so long, and who I had become so attached to. I had lots of different tests done before I could start my conditioning therapy, including a scan. When my consultant came to see me to get me to sign the consent papers, he told me that the scan had showed a bit of improvement which was a big shock! I was to be having a high dose chemotherapy regime called LACE-Campath before my transplant.

I had the conditioning therapy without any problems and on the 10th July I had my donor stem cell infusion. I spent the next 6 weeks in isolation waiting for my new bone marrow to grow, and along the way I picked up the bug C-Diff. I also stopped eating and needed an ng tube which stayed in for about a month. I had a chest scan after 3 weeks to make sure there were no fungal infections, and it showed nothing! Not even any sign of the Hodgkins!!! I picked up an infection while I was in and had to have my central line taken out, but I had a new one put in a couple of weeks later.

Once I left the hospital I had to return 3 times a week for blood tests to make sure I didn't need any transfusions or other products, and to moniter how well I was grafting. The appointments eventually became less regular. After 3 months I had a scan which showed complete remission and I had my central line removed! I am now past the 6 month mark and still in remission, and I feel fitter and healthier than ever.

MIRACLES DO HAPPEN! NEVER STOP BELIEVING!!

Your STRENGTH & COURAGE has shown us all, what it takes to defeat and KILL cancer!!!