Living For Lamingtons: Journey To And Through Induction
As I mentioned in my first column 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 (bortezomib) with two infusions each week for three weeks and one week’s rest, plus high-dose dexamethasone (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 (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.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi Marjorie,
It's wonderful and very encouraging to hear of your rapid, positive response to your initial treatment regimen.
I wonder, could you elaborate on your "myeloma-related lung issues"? I don't believe I've heard about initial lung issues before.
Good luck in your continued therapy!
Joseph
Wow! What a journey you've had!! It really is surprising that we can come back from such awful devastation of our bodies. May you continue to knock this invader out, and live as normal a life as possible.
Julia Munson
We've all heard different stories about people having a difficult time getting an accurate diagnosis, but it sounds like you were really put through a lot, especially being somewhat on your own and continents apart from your partner.
Thanks for sharing this, Marjorie. It is so nice that you recovered from such a terrible time, and that your husband was able to make the diagnosis just from hearing about the blood tests, and you were able to get the help you needed. I hope that you are feeling back to normal now too!
Dear Joseph,
Many thanks for your encouraging comments. I hope this makes sense regarding your question: The doctor described my lung problems as 'myeloma lung infiltration' in his diagnosis. This is just my attempt at an explanation rather than a medical comment!
I had presented with plural effusions in my lungs, but subsequently they discovered that I also had infiltration of the lung tissue with plasma cells. This meant that my blood oxygen was very low as gas exchange in the alveoli was reduced. I had to be on oxygen all the time until it eventually resolved as the myeloma treatment started to work. My understanding was that it happens when the tumor load is very high and the plasma cells start spilling out into other tissues. I hadn't realised that it was particularly rare but on reading the article I've listed below, I realize that it is.
Best wishes,
Marjorie
Reference:
Marmor, DB, et al, "Acute respiratory distress syndrome due to pulmonary involvement by neoplastic plasma cells in multiple myeloma," Thorax, May 2016 (full text of article)
Julie - Yes, I agree it is amazing how our bodies can recover. Thanks for your good wishes. I love to feel 'normal' and I try to savor each moment!
Mark - Thanks and yes, the distance did make things seem harder, but luckily we managed to reunite and face things together.
Nancy - Many thanks, I was very fortunate to get the help I needed. I send you my very best wishes.
What an amazing story. You and your husband both used every last little bit of intellect and emotional intelligence to solve a real and dangerous mystery. I hope you continue to be well!
All the best,
Barbara
My husband became suddenly ill while on holiday in Quimper, France, 2 summers ago and was admitted to hospital and there diagnosed with multiple myeloma within 3 days, mainly because of very high blood calcium levels and back pain. Rather traumatic, since we were with our 3 daughters and their families, including 7 grandchildren. However, the hospital was great and they started treatment with steroids and kidney dialysis right away, though he had to wait for Velcade until after being flown by air ambulance back to hospital in Edinburgh.
I sometimes wonder what would have happened if the hospital in this small provincial French city hadn't been so good. Probably lots of visits to a GP with increasing back pain and therefore postponement of effective treatment. He responded very well to the Velcade and is still in remission 21 months after a stem cell transplant. It's amazing for him to go from near death to feeling normal again.
I wish you all the best and sorry that the Scottish GP didn't spot what the blood abnormalities meant. We were told in hospital that they are supposed to consider multiple myeloma with serious back pain in over 50s, and certainly with high calcium levels.
Hi Marjorie and Annette,
My story couldn't be more different, and I am more than grateful for it. I went to my GP with pneumonia and after blood tests and repeat tests, I was referred to a myeloma specialist in Belfast within days. I was so lucky to be picked up while still smouldering! I have been on treatment for over a year and it has been a slow, slow road, but how much worse to take ill far from home!
Best wishes,
Jane
Barbara - Many thanks for your good wishes. I am fine at the moment and certainly glad to have that particular phase over!
Annette - What a dramatic way to find out that your husband had myeloma. It is good to hear that it was diagnosed so quickly in France and that he is now feeling well again. I send you both my very best wishes.
Jellytot - Glad to hear that your condition was picked up so quickly. I hope your treatment is successful. Best wishes.
Wow Marjorie - what an ordeal. While many of us have experienced situations similar to yours, I doubt many of us have had to get on a plane and fly half way around the globe to get a multiple myeloma diagnosis. That was a very courageous move on your part. We thought going from Nevada to Texas was an ordeal - silly us!
It is great to hear that you started receiving treatment and that regimen is working for you. I pray that you will continue to see improvement in your condition and that you will be ready for your stem cell transplant soon. We look forward to hearing about your progress. The Beacon and its contributors are an invaluable resource for those of us on this multiple myeloma journey. My husband is 15 months post stem cell transplant, on maintenance chemotherapy, and appears to be doing well. Like many, he has mostly good days and a few not so good.
Dear Patty, Thank you for your concern. I do think going from Nevada to Texas would also be tough! I send my best wishes to you and your husband. I can totally relate to the good days and not so good days. Let us hope for many more of the good days.
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