[Sinead50]

Diagnosed with Stage 1 multiple myeloma at 50

by Sinead50 on Sun Feb 18, 2018 9:13 am

Hi everybody.

After a month or two of reading the opinion pieces and various forum posts here on this great website, I have now registered, and here I share my story.

I live in Galway, Ireland. I had back pain for a number of months. I tried everything from physio to reiki to massage and acupuncture. I found myself exhausted dealing with it, coming home from work and sitting with my back against the radiator to try and ease it. I couldn’t get out of bed easily, I couldn’t cough or sneeze, or even laugh properly. Eventually I went for an MRI, which showed bone damage at T3. The swelling was pressing on my spinal cord, hence the pain, and the nerve around my middle was compromised, hence the difficulties with coughing, sneezing etc. A week of tests returned all my organs clear, but gave me a diagnosis of stage 1 multiple myeloma, with damage to my ribs, T3, and parts of my skull.

I received radiation to my back, to reduce the swelling, and stop it pressing on my spinal cord, then started induction therapy, CyBorD (cyclophosphamide, bortezomib (Velcade), and dexa­metha­sone), as well as being on a clinical trial for daratumumab (Darzalex). 16 weeks of this treatment regimen, the first 8, I had a Darzalex infusion every week, the second 8 sessions have an infusion only every second week. After the induction, an autologous stem cell transplant, with 8 more weeks of CyBorD after the transplant and finally two years of maintenance on Darzalex.

Currently I have had 13 of the 16 induction treatments, and my numbers are down to zero. I am responding very well, and am really fortunate to be under the care of a physician specialising in early stage multiple myeloma, and also to be on the trial. I live near the hospital, and everything is going smoothly, treatment-wise.

My weeks have a routine: still working Monday, Tuesday, Wednesday. Infusion on Thursday, which leaves me woozy and tired, steroid Friday, I am buzzing from morning till evening, then crash, then awake in the small hours, then a down day on Saturday. Sunday can be tender and tired, but usually coming back to myself, and then the week starts again!

I am stopping work for 6 months from March, and am looking forward to a three-week break after the induction, before the stem cell transplant, which is the scary thing looming on the horizon, before I even think about now living with a chronic disease for ever more.

Glad to have found this site, have found it very informative and inclusive.

[Pepperink]

Re: Diagnosed with Stage 1 multiple myeloma at 50

by Pepperink on Sun Feb 18, 2018 3:02 pm

Sinéad,

I took a two-week tour of Ireland a few years ago. I did not want to leave. I especially loved south­western Ireland. I have Irish ancestors on both sides of my family, most likely from the Galway area ("O'Keely" or one of the 30 variations). Genealogy research in Ireland is very limited, I found.

Anyway, you are really on an aggressive treatment, I would say, and the future results look promising.

You are indeed fortunate to be close to a specialist.

Thanks for posting. I really look forward to watching your progress!

Cheers!

[Sinead50]

Re: Diagnosed with Stage 1 multiple myeloma at 50

by Sinead50 on Sun Feb 18, 2018 8:00 pm

Thanks Jimmie.

Glad you enjoyed your trip to Ireland.

I certainly feel fortunate to have been diagnosed early, and to be on a trial, which seems to be working for me. It’s a long road though, and only bit by bit am I realising the implications of having multiple myeloma. Still, one step at a time ...

Thanks for posting.