User:Filceolaire

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I'm an engineer based in London. I design the power and control systems for buildings but since January 2014 I have been off work with Hodgkins lymphoma.

I tend to do general cleanup work on Wikipedia, fixing spelling and rewriting sentences so they flow better.

I was one of the early editors of Wikidata and since January 2013 I have been a regular editor there, contributing to the review of proposed properties and Project Chat other aspects of wikidata.

My Livejournal blog

Filceolaire passed away on January 29th 2016. Please contact his family at raft.tree at gmail if you wish for more information.

My Cancer diary

In early 2012 I started getting night sweats and fevers

In November 2012 I was diagnosed with Hodgkins lymphoma and started ABVD chemotherapy.

In July 2013 my lymphoma seemed to have been eliminated but in December 2013 I had a recurrence and in February 2014 I started DHAP chemotherapy.

This reduced the lymphoma to the point where they planned to give me an self stem cell transplant. Unfortunately a scan two days before the transplant showed the lymphoma had come back so the transplant got cancelled.

In July 2014 I started treatment with Brentuximab. This is a monoclonal antibody but it didn't work for me so they put me on what they call mini-BEAM chemotherapy.

The mini-BEAM chemo worked well enough that the booked me for a sibling stem cell transplant in mid Feb 2015 unfortunately the baseline scan carried out just before the transplant showed recurrence and the stem cell transplant was once again cancelled at the last minute.

After this I was told that no other options for treatment were available and they would switch to palliative care. As I was still in good shape I was sent home till the symptoms returned.

My 60th birthday party that April was good - all of them.

In my review with the doctors in July 2015 I was proposed for a drug trial - a H-DAC inhibitor. This finally started in November 2015 and unfortunately coincided with the return of the lymphoma symptoms - night sweats and fevers. As the trial drugs did not have any effect on the lymphoma I was taken off the drug trial so I could find a treatment which will slow down the Lymphoma.

In January 2016 I am to start Vinblastine chemotherapy to slow the progression of the lymphoma. The doctor did warn me, however, that we are now in the final stages - maybe months.