On Sunday 4 December, it was exactly 4 months after the transplant of my stem cells and I’ve not written anything for a month, so it’s time for an update.
You may recall I am on the Myeloma XI trial and post-transplant, I was randomised to receive Revlimid as maintenance treatment. They want to see if it is more effective than no medication at maintaining remission. My consultant believes it is, based on the results of a previous trial testing the drug at this stage, so as I mentioned in an earlier update, I will be taking it until I have a relapse of the cancer.
Because I’m taking Revlimid, I see a consultant every four weeks to receive a new prescription and have the now-laughable pregnancy test. Each consultant visit is accompanied by a blood test.
I also go to Daycase every four weeks to receive an IV infusion of Zometa to protect and repair my bones. This experience is less laughable, as without the Hickman line, they have to use a cannula each time and it’s rarely an easy task and never pain-free to insert it.
On 1 November, I was out for a walk in the Peak District with a friend who also has myeloma, when my phone rang (“My Boy Lollipop” singing out in the middle of a field). It was Sarah, one of the specialist nurses, advising me that I would need another bone marrow biopsy post-transplant and that she had booked me in on 21 November, straight after my next consultant visit.
This friend, who had her transplant four weeks after me, had just been telling me that she would be having a biopsy at the end of November. I was also aware that another woman with myeloma who had a stem cell transplant two weeks before mine had just had a biopsy, so although it hadn’t been mentioned prior to this phone call, I wasn’t really surprised to hear they wanted to do another one.
I thought the 3-month post-transplant biopsy was mostly for the trial, as I’d already been told I was in complete remission. But my friend is no longer on the trial due to bad side effects from Thalidomide at the initial treatment stage, so it must be normal procedure just to confirm more accurately the level of remission/disease that the blood tests show.
Other than the discomfort, I wasn’t worried about having the biopsy and it went quite smoothly on the day. With just a 5-minute rest afterwards, I was able to go off to my usual Monday afternoon Tai Chi class. I assured the doctor that it is a very gentle form of exercise. I will get the biopsy results when I next see the consultant (19 December), but I’m not concerned or fearful.
I met another woman with myeloma in September in the clinic waiting room. She is now up on Fletcher ward, going through the high dose chemotherapy and stem cell transplant, but on the day of my consultant visit and biopsy, she was in Daycase having her stem cells collected, so I popped in for a chat.
My prescription wasn’t ready even after having the biopsy, so rather than miss my Tai Chi class, I decided to return the next day to collect it. That gave me another chance to have a chat with her… I was there for almost three hours! They managed to collect a very decent amount of stem cells from her over two days and other than her absolute aversion to the Hickman line, she seemed to be taking it all in her stride. I remembered that I was quite buoyant too at that stage.
On 21 November, when I last saw Dr Jenny Byrne, I went with a list of questions…
What happens now?
Keep taking Revlimid (and aspirin to protect against possible thrombosis) until I have a relapse. Inform the consultant if I experience any side effects. Get on with my life.
Will I need any more biopsies or 24 hour urine samples?
No. Any sign of a relapse or a change in the kappa:lambda ratio would show up in blood tests long before it was noticeable in a urine sample. And at this stage, a biopsy is used more to confirm blood test results rather than to diagnose any changes.
Do I have to keep coming every 4 weeks to see a consultant?
Yes, because I need to have a pregnancy test before each cycle of Revlimid and because they can only issue one cycle’s supply of the drug each time. Dr Byrne said they were going to try and extend this to two cycles. Maybe by the time they do, I won’t need pregnancy tests any more. After 12 months of no bleeding, it’s no longer necessary as you’re considered post-menopausal. That will be April 2012.
How will we know if I have a relapse?
The first indication will be a change in the kappa:lambda ratio, which will show up in the four-weekly blood tests.
What happens then?
They won’t necessarily rush into further treatment immediately, but will keep an eye on how rapidly the ratio changes. If it goes up slowly, they will wait till it reaches a significant difference. If it goes up quickly, they will need to respond more promptly. The next step would be a second stem cell transplant, for which they have already collected and frozen enough stem cells from me.
Something I’d not thought to ask at the time, and it was a bit late now, but nonetheless, having heard that the mortality risk of a donor stem cell transplant is around 20-30%, I was curious to know what is the risk for an autologous transplant?
Only about 1%.
I’ve been told that remission could last just months, which would actually count as a failed transplant. I think the average remission is around 3-5 years, although perhaps this figure is going up as treatment improves. When I saw Prof Russell in September, he mentioned that he has some patients who are 15 years in post-transplant remission. So, my next question had to be, is there any correlation between response to initial treatment, response to stem cell transplant and length of remission?
A resounding ‘NO’ to any of the above. At least not that they have any clear evidence of so far. So, one could have a complete remission from the initial treatment, a complete remission from the stem cell transplant and then only a short remission. Equally one could have only a limited response/partial remission to initial treatment and/or transplant and the partial remission could last for many years. It seems it’s just the luck of the draw.
And finally, a question that some people wouldn’t want to ask, or maybe wouldn’t even want to know, but I had to ask, even though it was difficult… If/when you die of myeloma, how is it? How does it happen?
It could happen in a number of ways… the kidneys could deteriorate, requiring dialysis, until they fail completely… there could be a variety of blood problems – hypercalcaemia (which I had when I was first diagnosed) which makes you confused and lose appetite, as well as causing kidney failure; or low blood counts leading to infections, internal bleeding, weakness, which could all lead to developing pneumonia… bone pain or bones breaking/cracking, leading to loss of mobility and being confined to bed, which would also lead to weakness and becoming susceptible to infections and pneumonia. Ultimately, whichever things happen, Dr Byrne said it is usually a case of “one thing after another” (her exact words).
Sorry to end on such a morbid note, but it feels important to know how it might be. In our culture, we rarely think or talk about death and even less about dying, except when faced with it and even then it’s usually someone else’s. Openly facing one’s own dying is possibly brave, but eventually inevitable, although for most of my contemporaries, not something they are likely to need to consider for quite some years.
According to the NHS, UK life expectancy has risen to 78 for males and 82 for females. For me, that is highly unlikely to be the case, but it could be around 65-70, but it could also be much sooner… How to live with that uncertainty?