Waldenstrom’s: I’ve learned as much as possible about my illness
When Peter Carr first mentioned bleeding gums to his GP in 2004, little did he know it was the beginning of his journey with a rare form of lymphoma, Waldenstrom’s Macroglobulinaemia (WM).
At the time, Peter was an accountant with a busy home practice.
Peter mentioned the bleeding gums to his GP who ordered blood tests which revealed high protein levels. He was sent immediately to a specialist.
“I really can’t remember much about my first appointment, but the specialist wanted x-rays and more blood test done as quickly as possible. When those results came in he told me that I didn’t have multiple myeloma which was what he first suspected,” Peter said.
CT scans, a bone marrow biopsy and more blood test were carried out, however, the specialist still didn’t seem to be getting the answers he was looking for.
At the end of 2004, biopsies were taken from some enlarged lymph nodes which had developed in Peter’s groin and WM was diagnosed.
Unfortunately the Mabthera treatment Peter was given early 2005 had little success. By March that year he had little energy and just walking up a hill left him breathless.
More tests were done and his bone marrow biopsy showed 80% involvement of the WM cells. Peter’s specialist ordered some initial treatment to stabilise the situation and then began chemotherapy.
“I was given one dose of chemotherapy, and then I had plasmapheresis (removal of old plasma and replaced with new plasma) while I was in hospital and after I came out, which made me feel much better,” Peter said.
“I then had six treatments of the chemotherapy which produced amazing results. My doctor felt that the illness was now stable.”
With the WM cells at such a low level, Peter’s specialist recommended that it was time to do a stem cell harvest.
Peter was still working full-time and for the rest of 2005 through to the middle of 2007 he was advised to watch and wait.
The igM number started increasing slightly, so the specialist suggested four rounds of Mabthera as a maintenance treatment. (WM patients overproduce a protein called macroglobulin (IgM), which is a type of antibody. High IgM levels cause hyperviscosity of the blood, meaning that it becomes too thick. The thickness of the blood causes most of the symptoms a patient suffers from. Lymphomainfo.net)
During this time Peter had gathered information from the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) which had a forum enabling people to post questions, research information and get comments from other members.
“There was a ‘debate’ going on in the United States at the time about whether maintenance treatment should be four or eight rounds, with eight seeming to be the most favoured. I was able to discuss this with my specialist and he agreed to give me eight rounds of Mabthera,” Peter said.
Peter said his specialist now regarded his disease as stable and he was now on “watch and wait”.
He said it had certainly been a great help to him to learn as much as possible about his illness and the treatment options.
“I have learned a lot from the IWMF website and the IWMF forum, and this has allowed me to discuss treatment options with my specialist from a more informed point of view,” he said.
WM and its treatment has, in Peter’s case, caused two major side effects – fatigue and infections.
“In 2007 my fatigue became severe, and after reducing my work load to part-time, I finally decided to quit work altogether. Fortunately I had income protection insurance,” he said.
“I am now enjoying life and as long as I take care and go to bed when I get tired, I have managed to keep the fatigue under control.”
In 2008 his recurrent ear and sinus infections became a concern, however treatment with intravenous immunoglobulin seems to have largely kept the infections at bay.
While on “watch and wait” with his disease stable and under control, Peter said he was enjoying travelling, something he thought he wouldn’t be doing until he retired.
“In April 2010 I had the honour of attending the IWMF yearly educational forum, which was held at Las Vegas. This was an amazing learning experience, and I met many other people with WM and learned how it affects people in so many different ways,” he said.
“I also met some Australians including Colin Perrott, who is now the IWMF Australian support person, Colin has taken that role over from Gareth Evans who had started a forum for Australians with WM called WMozzie quite a few years ago.”
“Since then we became more involved with WMozzie and Colin Perrott, developed a website aimed at Australians with WM called www.wmozzies.com.au, on which the three of us are listed as contacts if people want to speak with a WM patient.”
“This is a great resource for patients and families with local information. We have also developed a very close relationship with the Leukaemia Foundation, which is now forming a closer relationship with the IWMF. The Leukaemia Foundation offers support and care for patients and families affected by WM and funds research into blood cancers.”
“My personal research into this illness and being involved with the IWMF, WMozzie and the Leukaemia Foundation has shown me that that the original information I read on the internet of five-year life expectancy is not accurate.”
Share your story
If you would like to share your own personal story of living with your diagnosis and have it published here, please contact us on email at firstname.lastname@example.org.