From UK – Roger Brown: Why It Pays Never to Give Up

This is an update to ROGER’S STORY published on ON DECEMBER 11, 2014


Multiple cycles of chemo and relapse, followed by an autologous stem cell transplant. The photo shows the last of my hair coming off during transplant!       

I was diagnosed at 53 (16 years ago) getting breathless learning to tap dance. My wife Alison noticed night sweats, tiredness and more dimwittedness than usual and thought it might be MS. I then came down with shingles and pleurisy. My doctor said I was depressed and prescribed happy pills, but a blood test produced the diagnosis of WM at a local leukemia center. 5 years was quoted as survival time!  This necessitated a strong cup of tea.   Breathlessness was due to thick blood due to excess IgM at 50 and viscosity (thickness) of 5.4- some 4 times normal, and explained the lack of brain power. The tiredness being put down to anemia with a hemoglobin of 90. Luckily, I had none of the eye damage that sometimes accompanies hyper- viscosity.

Initial treatment was plasmapheresis to lower the IgM – some 12, 2.5 hr. sessions in all at 3-5-week intervals at the Bristol National Blood Transfusion Centre which provided instant relief. I was also prescribed a course of Chlorambucil, a well-tried alkylating agent which I followed for a week.

The Second opinion – with the help of the IWMF website and friends working for Cancer Research UK we sought a second opinion (everyone is entitled on the NHS) and found the Myeloma and WM clinics run at University College Hospital, London. Although 2 hours travel, it was worth it to talk to specialists who had seen dozens of patients, seemed to have a long-term plan and actually contributed to research in WM.

The New treatment was 2 cycles of 2CdA (Cladribine, similar action to Fludarabine) intravenously as a day patient at monthly intervals. This gave me a partial remission for 2 years, but then relapsed as my blood counts went “south” and IgM rose.

The Next chemo was 6 cycles of R-CHP, a mixture of Rituximab and conventional chemo (not CHOP, as I had considerable peripheral neuropathy in my feet, and (O)Vincristine makes this worse) at monthly intervals in the chemo bay at University College Hospital, which I found more psychologically challenging than physical.  During this time, I also sorted problems caused by sinus infections and acid stomach reflux. The counts all slowly recovered, and I had a good partial remission for another 5 years. I was initially offered a stem cell transplant, but declined.  During this time, we attended the excellent IWMF Educational Forum in the USA, International Forums in Stockholm and Venice and the London Support Group meetings.  All through the treatments we kept a spreadsheet of blood tests and treatment so I could compare symptoms with the test results.  I continued to work and visited places such as Antarctica as a travel photographer, with no problems.

In Autumn 2010 red and white cell counts declined again and tiredness took over. In January 2011 we decided to go for an autologous stem cell transplant.  The first step was to have a PICC line inserted in my Arm (Peripherally Inserted Central Catheter). This was used to infuse the chemo and also if I needed intravenous antibiotics. Chemo consisted of two bouts of R-ESHAP chemotherapy to reduce the disease in the Ambulatory Care unit at University College Hospital (you have chemo in the mornings for 4 days and stay in a nearby hotel with the hospital on call).  Once recovered, the next step was removal of my own stem cells, which proved to be a challenge at 61.  I had two sessions with two varieties of treatment including Plerixafor which encourage the stem cells to migrate into the bloodstream where they are centrifuged out.  I just managed to produce the required 2 million cells per liter, which were then frozen.

The Stem cell transplant – We put aside most of August 2011 for the autologous transplant.  You are treated with a very high dose LEAM or BEAM chemotherapy which destroys the bone marrow, and your own stem cells, previously collected and frozen, are put back in time to rescue you (‘engraft’) before you peg out. You start in Ambulatory Care (in a hotel environment), but then admitted to a specialist ward with positive pressure rooms to avoid infection.   I was lucky and fastidious catching nothing serious, and was out in 12 days after having my cells back – some three weeks in total, and was back at work in a month feeling very good with normal blood counts.  All previous tiredness slowly disappeared, which it had not done after previous chemotherapy.

Relapse & retreatment – In 2016, almost 5 years after the transplant, my blood counts dropped and tiredness reappeared.  After some discussion I agreed to 6 rounds of Bendamustine + Rituximab at University College Hospital London.   This proved pretty tolerable, the only side effects being constipation for a couple of days after each session and temporary soreness of the veins round the infusion site.  I had low neutrophils the week after each session which was countered with self-administered GCSF injections.  The counts rapidly improved and soon the IgM readings were almost normal.   Due to low IgA and repeated sinus infections, I tried IVIG infusions, but this did not improve things, so i discontinued and sought specialist ENT advice.   In summer2018 things are still looking good, and there is some reassurance that Ibrutinib is now available when I inevitably relapse again!

Another new problem!

Following some anomalous blood test results (alkaline phosphatase mainly), in May 2018 my physician ordered a PSA test for Prostate Cancer which resulted in a very high result of over 50.  Subsequent scans showed I had locally advanced prostate cancer, and now await a date for radical surgery. I had none of the usual prostate symptoms.

The moral of this tale is that we suffer all the usual problems of increasing age and to keep a look at all aspects of our health and blood tests, not just concentrate on the IgM, neutrophils and hemoglobin!    I’m just lucky that I shall be having surgery when the WM is still in remission.

Roger Brown
Chingford, London
January 2019