tim-wright
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Hodgkin Lymphoma - my Everest journey

tim-wright
Posted by
13 Jul 2017

The story of my ongoing cancer journey and living every day as it comes

Everest basecamp Nov 2010

It all began with a dry cough in Jan 2012, followed by breathlesness and tiredness in the coming months. After a PET scan and biopsy, I was diagnosed with Hodgkins Lymphoma in June 2012 and started 26 weeks of ABVD treatment in July, at fortnightly intervals, completing this treatment just before Christmas 2012.

Following a PET scan in Jan 2013, I was told I was in remission, this lasted for 5 weeks. Another PET scan confirmed that the Lymphoma had returned and a bone marrow biopsy confirmed it was also in my bone marrow, in March 2013 I comenced the 1st of my  2 IVE treatments.

It was decided that I might need an autologous stem cell transplant, so after my 2nd IVE treatment, my stem cells were harvested and sent away to be frozen and kept ready for a few months time. Again I had another PET scan and bone marrow biopsy to confirm I was in remssion.

We set a date of Aug 2012 for my autologus stem cell transplant, 5 days before this date, my symptoms returned, remission had lasted 9 weeks. It was then decided, that since I'd failed 2 treatments that I qualified to try a new drug, Brentuximab, which was available from the Cancer Drugs Fund. I began this treatment in Sept 2013 and at the outset it was thought that 4 doses would do the trick.

I had 2 doses of Brentuximab but 6 days before my 3rd dose on 30th Oct 2013, I collapsed, with what turned out to be Acute Pancreatitis. After a couple of days in hospital, I was placed in a medically induced coma for 7 days and remained in ITU for a furher 3 weeks, finally coming home some 8 weeks after collapsing. It then took me a further 4 months to recover and be strong enough to face the Lymphoma and in April 2014 I had another PET scan and bone marrow biopsy to see where the Lymphoma was.

Turned out it was in all my usual places plus it had also gone into my spine and left lung cavity. I was then told, that I needed to have another treatment called GenP, to get me ready for an Allogenic stem cell transplant, the problem was, no one thought I could surive it.

I started my GenP treatment in May 2014, as did the search for a stem cell donor. Subequently, I had 4 doses before I was considered ready. In Aug 2014 I was told that 2 donors had been found, alhough one was a better match than the other and so my transplant date was set for Sept 2014.

A week before the transplant I had a phone call to say that there was a problem with the 1st donor and the transplant was cancelled. 2 weeks later and another call and the 2nd donor was good and a new transplant date was set 21st Oct 2014. I received those stem cells on 30th Oct 2014, unfotunately they didn't take and had to be killed off 2 weeks later.

No other donor was available, which just left my own stem cells in the deep freeze, the ones that no one trusted. I had my own stem cells on 19th Nov 2014 and went home 21st Dec 2014, only to go home and develop mucositis in my mouth, throat and oesophagus, so back to the hospital for treatment and I also contracted at some point, CMV virus and BK virus, which took a very long time to go.

I finally came home in Mar 2015, after 5 months in hospital. My immune system is permanently low and in the following months I had several chest infections, culminating in me getting PCP pneumonia, shingles and a very high calcium level, all at the same time. I was in hospital isolation for 10 days receiving treatment.

It's now Jul 2017, some two and a half years since my transplant and although I still get the occasional chest infection, I'm good and now working on getting fitter and getting back to the things I used to enjoy. I'm medically retired and volunteer at a local cancer charity, as well as doing some voluntary work on an NHS Living With And Beyond Cancer (LWABC) group at my local hospital and also helping out on Health & Wellbeing talks for newly diagnosed cancer patients at the hospital.

Comments

24.07.2017

Tim,

I have read many, many patient blogs but this has to be one of the most extraordinary that I've ever come across.

You've been through so, so much and I have absolutely nothing but respect for how you've managed to endure all the setbacks and come out the other side and get back on with life.

I'm a transplant 'survivor' myself and have a few complications as a result of all my treatment but they pale in to insignificance compared to what you've been through and make me feel incredibly grateful for my life as it is.

Wishing you all the very, very best going forwards. You deserve a bit of luck!!!

27.07.2017

Tim, thank you so much for sharing this hugely insightful blog. I'm so sorry you've had such an extraorninary amount to have to cope with, I can only imagine how tough this must have been at times. It's really good to hear that you're managing to get back to do the things that you enjoy. Take care and remember that our support line is just a phonecall/email away if there's ever anything we can do to support you. Heaps of very best wishes to you, Alice 

05.08.2017

Tim, what a stunning photo and thanks so much for blogging your 5 year journey and thanks for all your volunteering work with cancer patients, take lots of care of yourself.