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Living For Lamingtons: Journey To And Through Induction

By: Marjorie Smith; Published: November 15, 2016 @ 11:38 am | Comments Disabled

As I mentioned in my first column [1] last month, I was pretty ill when I was diag­nosed with multiple myeloma in June 2015. Despite nu­mer­ous visits to doctors, physio­ther­a­pists, chiro­prac­tors, and massage thera­pists, it took months for me to be re­ferred to a hematology depart­ment. I know from reading The Beacon that this is far from a unique experience, and many people unfortunately may relate to this experience.

At the time when I discovered that I had multiple myeloma, my husband Graham was working in Singapore. I had gone back to Scotland, as I was sup­posed to be speak­ing at some educa­tional meetings. I had not been feeling well for a while, but things started to dete­ri­o­rate very fast once I arrived in Scotland. The days became a real torture of pain, and each day seemed to be worse than the previous one.

I have always been a fit and healthy person, but I could no longer walk any distance, nor could I lie down or move about without excruciating pain. There was no way I could go to speak at a meeting. Indeed, I could hardly move around our house in Scotland.

Each visit to the local general practitioner was a nightmare. I was prescribed pain killers, it was suggested that I was suffering from depression, and I had no answers to my questions as to what was wrong with me. I remember so well that I kept thinking that there must be something seriously wrong with me, but I had no idea what it might be.

One doctor took some blood, and when I returned to the surgery, I managed to get a printed copy of the blood test results. That weekend I called Graham and read out the results to him. He immediately thought that I had multiple myeloma. He had studied hematology many years previously, so the high protein level, the M-spike, the anemia, and the high calcium levels spoke volumes to him.

We had a terrible decision to make. Thousands of miles lay between us, and we needed to get together and face this new challenge. We talked through the night, and our decision was mutual: I would fly back to Singapore, and we would go to see a doctor with the blood test results in my hand.

There were many reasons for this decision.

Graham knew that we had a difficult, lengthy, and expensive fight on our hands. If he came back to Scotland, he would have to give up his job and his income.

We had an apartment in Singapore that we were committed to for two years. What on earth would we do with that if we were back in Scotland?

More importantly, I had completely lost confidence that anything was ever going to be done to help me in Scotland. The Singaporean system seemed potentially more responsive.

A complicating factor was that we had no idea if our health insurance, which went with Graham’s job, would cover my treatment, but this was a risk we were prepared to take.

The decision was made, and I traveled back to Singapore just three days after we had worked out what was probably wrong with me. I was in such a sorry state that my brother had to fly with me and I had to use a wheelchair in the airports.

I arrived in Singapore, and the following morning Graham and I went to a local Singaporean general prac­ti­tioner armed with the blood test results from Scotland. This doctor recognized that there was something seriously wrong and immediately referred me to one of the hospitals that had a hematologist-oncologist on staff.

Within two hours of this referral, I was hooked up to a Zometa (zoledronic acid) drip and on my way to further blood tests, a bone marrow biopsy, skeletal survey, and other diagnostic tests.

At that point, I had lots of complications, including a major urinary tract infection, low blood oxygen levels due to lung damage, biochemistry which was all over the place, and almost intolerable pain. I was admitted into the ward that was aligned to the hematology clinic and treatment started immediately.

The initial phase of treatment involved high-dose, intravenous antibiotics to treat the infections, blood trans­fusions to address the anemia, and morphine patches to reduce the bone and nerve pain.

After three days in the hospital and confirmation of my diagnosis – IgA multiple myeloma – the induction treatment started. Initially I received intravenous Velcade [2] (bortezomib) with two infusions each week for three weeks and one week’s rest, plus high-dose dexamethasone [3] (Decadron).

My IgA M-spike started to decline from 6.7 g/dL (67 g/L) to 5.5. g/dL (55 g/L) after the first week. Although my doctor was happy to see the initial response, he decided that given my massive tumor load he wanted a faster response, so Revlimid [4] (lenalidomide) was added to the mix – 25 mg daily for 21 days, with 7 days rest. This change in regimen also coincided with my karyotype and FISH results, which, much to our relief, showed that my multiple myeloma was hyperdiploid and considered standard-risk disease; we actually felt fortunate!

The addition of Revlimid resulted in a near daily decline in my M-spike and a total resolution of my myeloma-related lung issues. The drugs did cause many side effects that are familiar to many, such as neuropathy, gastrointestinal upsets, and insomnia.

However, after just three cycles of Velcade, Revlimid, and dexamethasone, my M-spike had completely dis­ap­peared and my marrow was virtually clear of myeloma cells.

My induction had thankfully been successful and I was ready for the next step in the journey – an autologous stem cell transplant.

Marjorie Smith is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is pub­lished once a month. You can view a list of hercolumns here [5].

If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2016/11/15/living-for-lamingtons-journey-to-and-through-induction/

URLs in this post:

[1] my first column: https://myelomabeacon.org/headline/2016/10/24/living-for-lamingtons-making-rules-to-cope/

[2] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[4] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[5] here: https://myelomabeacon.org/author/marjorie-smith/

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