Catch-up : Potted history

For anyone stumbling across my blog who doesn’t know the history, here’s a potted version, so you don’t have to read the whole story from Day 1, but please feel free to do so if you want more details. I will include a link to the first post relating to each dated step.

July-Dec 2010 – middle back pain, loss of appetite and taste, constantly tired. (

Dec 2010 – ill with presumed virus. Blood test at doctor’s surgery.

Jan 2011 – diagnosed with severe kidney failure. Urgent referral to renal consultant. Weekly blood tests to find cause. Appetite and taste almost non-existent. Unable to work or do very much at all. Weak and tired (unaware of being anaemic).

Feb 2011 – diagnosed with hypercalcaemia (which explained appetite/taste problems). Admitted to renal ward for treatment. CT scan and bone marrow biopsy.

4 Feb 2011 – diagnosed with multiple myeloma. Started on Dexamethasone (steroids). (

7 Feb 2011 – start Myeloma XI trial. Start initial treatment of Revlimid, Cyclophosphamide and Dexamethasone [RCD]. (

Feb-May 2011 – four cycles of RCD. Complete Remission! (

Jun 2011 – Hickman line inserted, high dose of cyclophosphamide and GCSF injections to promote new stem cells in the blood. ( and

Jun 2011 – stem cells collected – 5 million! (

Jul 2011 – hair loss and shave ( and

2 Aug 2011 – autologous stem cell transplant (

25 Aug 2011 – admitted to hospital with an infection (

Sep 2011 – Complete Remission! Randomised for Revlimid as maintenance on Myeloma XI trial (

Oct 2011 – start taking Revlimid (

Dec 2011 – start programme of re-vaccination for polio, diptheria, tetanus, etc. (

Jan 2012 – relapse! (

Jan 2012 – new treatment regime: Velcade & Dexamethasone (

Mar 2012 – Complete Remission!(

May 2012 – allogeneic (unrelated donor) stem cell transplant ( and

Oct 2012 – 100% chimerism achieved and Graft versus Host Disease [GvHD] starts ( and

Nov 2012 – six months post-transplant (

Dec 2012 – began promoting stem cell donation for Anthony Nolan (

30 Dec 2012 – admitted to hospital with an infection – over New Year! (

Feb 2013 – took my first holiday abroad since the transplant ( and

Mar 2013 – recovery from stem cell transplant continues well. Complete Remission! 100% chimerism, mild GvHD and lessening frequency of clinic appointments, bar a minor scare ( and

May 2013 – began experiencing muscle/tendon tightness, which was only recognised as Graft versus Host Disease in December 2013 (

16 May 2013 –  celebrated the one year anniversary of my allogeneic stem cell transplant (

11 Jun-3 Jul 2013 – took my first proper summer holiday since initial diagnosis ( and more posts to come)

Dec 2013 – lung function had dropped over the past 18 months. Along with the muscles, tendons and skin problems, I am prescribed steroids for GvHD (

Jan 2014 – began extracorporeal photopheresis [ECP] treatment for GvHD

Feb 2014 – had a Hickman line fitted for ECP treatment because the combination of my veins and the skin GvHD made it difficult to access my veins.

Apr 2014 – Admitted to hospital with a high temperature. Staph. aureus infection discovered and treated with IV antibiotics. Hickman line removed. Discharged from hospital after eight days.

June 2014 – Hickman line fell out!



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