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

Roger BrownDiagnosed: At 53 I was getting breathless learning to tap dance. My wife Alison noticed night sweats, tiredness, 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 at a local centre produced the diagnosis of WM. Five years was quoted as likely survival time! This necessitated a strong cup of tea in a nearby cafe. The breathlessness was due to thick blood, (IgM at 50, viscosity of 5.4 – some four times normal); the tiredness was caused by anaemia, with a haemoglobin of 9. Luckily I had no eye damage that sometimes accompanies hyperviscosity.

Initial Treatment: Plasmapheresis to lower IgM – I underwent twelve 2.5-hour sessions at 3-5 week intervals at the Bristol Blood Transfusion Centre, which provided relief. I was prescribed a course of Chlorambucil, which I followed for a week at the LINC centre at Cheltenham.  Treatment, however, was a little disorganised.

The Second Opinion: With the help of the IWMF website and friends at Cancer Research UK we sought a second opinion (everyone is entitled to one on the NHS) and found our way to the Myeloma and WM clinics run at University College Hospital (UCH), London. Two-hour travel was a pain, but it was worth it to talk to specialists who had seen dozens of WM patients, seemed to have a long term commitment to the disease, and actually contributed to research in WM. I also had my first bone marrow biopsy, which showed 80%+ infiltration of WM cells.

New Treatment: Two cycles of 2CdA (Cladribine, similar to Fludabarine) intravenously as a day patient at monthly intervals. This therapy led to a partial remission for two years, but then relapsed as my blood counts went south and IgM rose.

Next Chemo: Six cycles of R-CHP, a mixture of Rituximab and conventional chemo (not CHOP, as I had considerable peripheral neuropathy in my feet, which is increased by Ovincristine) at monthly intervals in the chemo bay at UCH, which I found more challenging psychologically than physically. I also experienced but overcame problems caused by sinus infections and acid stomach reflux. The blood counts all slowly recovered, and I had a good partial remission for another five years. During this time we attended the excellent IWMF Ed Forums in the USA, International Forums in Stockholm and Venice, and London Support Group meetings. Throughout the treatment we kept a spreadsheet of blood tests so I could compare symptoms with test results. I continued to work and visited places such as Antarctica as a travel photographer with no problems.

Relapse Again: In Autumn 2010 red/white cell counts declined again and tiredness took over. In January 2011 we decided on an autologous stem cell transplant. The first step was a PICC line in my arm (Peripherally Inserted Central Catheter). This was used to infuse the chemo together with intravenous antibiotics. Chemo consisted of two bouts of R-ESHAP chemotherapy in the Ambulatory Care Unit at UCH to reduce the disease burden. It consisted of chemo in the AM for four days, with the added precaution of wearing an injection pump and staying in a nearby hotel, with continuous monitoring by the hospital. Once recovered, the next step was removal of my stem cells, which, at 62 years of age, proved to be a not insignificant challenge. I had two sessions with two varieties of treatment, including the use of Plerixafor to encourage the stem cells to migrate into the bloodstream where they are centrifuged out. I just managed to produce the required two million cells per litre, which were then frozen.

The Transplant: We reserved August 2011 for the procedure. I was treated with high dose LEAM or BEAM chemo to destroy the bone marrow. Next, my harvested stem cells were returned to me in time to head off any problems prior to the engraftment process taking hold. I started in Ambulatory Care, but then was admitted to a specialist ward that contained positive pressure rooms to avoid infection. I was lucky, contracted nothing more serious than a transitory digestive upset, and was discharged twelve days after having my cells back. All told, the process took three weeks. I’m back at work feeling very good, all tiredness gone, with normal blood counts and IgM still only 1.5, 28 months later. The hope is that this treatment will give me a decent remission until something better comes along. The last side effect to disappear (in time for Christmas 2011) was that all red wine tasted like vinegar. Some good things do happen!

Now it’s 2015: 3 ½ years on and things are pretty good- the IgM has crept up to 6.5 g/l so things are probably slowly on the move in the marrow, but all other bloods are still normal. The side effects of chemo and to some extent the WM have also persisted – (mainly tinnitus and neuropathy in the feet and recurring low level sinus infections), but nobody has ever died of these as far as I know, so I’m not complaining!

Published January 2015

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