Four months along – update

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?

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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10 Responses to Four months along – update

  1. Paul Creek says:

    Hello Jet
    Just about to start lead upto SCT,First visit to see Consultant who will be dealing with me then the cyclo priming/injections and harvest in January.SCT due early Feb.Like you i am on Myeloma 11 trial and on RCD pathway and had 4 cycles and in remission.
    Your blog is great to read and has helped me with some insight into the treatments.
    I turn 40 on Saturday and face the future optimistic as I always do.A glass half full rather than half empty!
    any tips jet on this Malphan mouth sore thing? I have heard you should suck an ice lolly?
    at what point Jet did your hair fall out which treatment did it?
    cheers Paul

    Like

    • Hi Paul

      With regards to the sore mouth, I was told I had one of the very worst cases of mucositis and others I’ve heard from didn’t get it nearly as bad, so I hope that’s the case for you too. When they gave me the Melphalan, they also gave me ice cubes to suck, which I think I wrote about. They were VERY cold and VERY large so I had to keep taking them out of my mouth and popping them back in again. I’m not sure how effective they were for me. You may want to take in your own ice pops as not all hospitals give you the ice. I was also thinking that they stopped giving me ice as soon as they stopped actually giving the chemo, but maybe it’s worth continuing to suck on ice after the chemo goes in, as obviously the chemo keeps having an effect for a long time afterwards.

      As for the hair, I’ve also written about that experience, but maybe it wasn’t clear… My hair started to come out after the initial cyclophosphamide chemotherapy to prime the stem cells, but not immediately – about 10 days later. See the blogs entitled “A weekend of surprises…” (https://jetblackliving.wordpress.com/2011/07/21/a-weekend-of-surprises/) and “Loss and liberation” (https://jetblackliving.wordpress.com/2011/09/20/loss-and-liberation/).

      It came out in clumps, leaving bald patches, so that’s when my friend shaved it all off, as it looked awful. From then on, I was completely bald throughout the summer and right through the SCT. When it began to grow back, about 2 months post-SCT, it came through the same colour as before, but very soft, like baby hair. See blog entitled “Long time no write…” (https://jetblackliving.wordpress.com/2011/10/18/long-time-no-write/).

      I hope that’s helpful for you and good luck!

      Like

  2. Snip says:

    Heya, Jet. Good to hear from you again!

    I guess it’s the same here in Canada as it is in the UK… a biopsy at 100 days after transplant. I have mine on Dec 17, and get the results a couple of weeks later. A bit nervous about it, I have to admit, as I have at this point no idea how the transplant went… tho it must have gone well, as I feel increasingly very good indeed.

    Per morbitity; I hear ya. I am 57 years old and have no illusions about hitting 80. It indeed is a strange thing to have to process, but I have done so and am cool with it. Now, every day has increased value, so at some level this feels like a win… does that make any sense?

    Keep the faith… enjoy the time you have for as long as you can!

    Like

    • Yes John, that makes perfect sense and I have that feeling too, although I often feel the “making every day count” as quite a pressure. It depends on how I’m feeling and how much energy I have on any one day.

      Like

  3. thanks for this update, this disease is time consuming isn’t it. I sympathise with you having to keep going back for tests which some are painful. I don’t know why people can’t embrace the subject of death and dying. It is the biggest thing we do in life other than being born, and, as you say, it’s enivitable, for all of us, some go sooner than others, but we all pass on.

    I personally don’t mind at all talking about death mine or others, although it’s hard to know what to say sometimes when it’s someone else, not yourself. I also am scared of having to tell my children/friends that I am dying, that is almost worse than dying!

    I always expect to drop dead cos of the abuse i put my body through – reasons too much to go into here-. but worring won’t help. My friend Serina, (camp site) and me are going to get together next autumn to make products for craft markets etc at xmas – i said “if I’m still alive i will”, so you see, i am quite if not obsessed, preoccupied…… wot ever, with death, and see illness as our only true adversary etc bla

    sorry to go on ! Love Pauline xx

    Like

  4. Sandra abraham says:

    Hi Jet nice to read your blog you do get answers to questions I’d ask if I could remember to ask them at the time. I’m 2 months post sct now and feel ok just tired and out of breath when doing anything strenuous. I’ve decided not to try to go back to work I’m 55 and if I’ve only 10 to 15 years left why the hell should I kill my self for 6.75 an hour six o’clock start’s on feet for 8 hours no thank you !!!!! As long as I can manage on what the government see’s fit hey ho !!!
    Sandra.

    Like

    • As my good friend says “You’re ABSOLUTELY right!” I am also hoping not to have to work. I am on ESA, but have just been moved from the Support Group to the Work-related Activity Group, so they may start hassling me soon.

      Like

  5. Mavis Nevill says:

    Jet

    Thank you for your very honest posting.

    I also wanted to know how we might die from Myeloma. My research suggests the same result as your consultant’s answer. The question it leaves me with is – as it isn’t absolutely the myeloma that kills us, why can’t we just deal with the complications and not worry about the underlying cause.

    All the very best and a very, very long remission.

    Mavis

    Like

    • I think if they don’t treat/halt the progress of the myeloma, then the ‘complications’ we die of will happen in just a few months and become incurable quite quickly, rather than in a number of years. For example in my case, it’s likely that I would experience severe kidney failure, leading to a need for dialysis. But the kidneys would continue to deteriorate (due to their inability to process the proteins and high calcium levels caused by MM), which would lead to complete kidney failure and if lucky, a kidney transplant, but that would be more risky/problematic than an SCT. But without treating the cause of the proteins and high calcium levels, the new kidney would also fail, leading to death. And they probably wouldn’t do a kidney transplant if the underlying cause was still active. I hope that helps with an answer to the question you’re left with?

      When I was first diagnosed, I did ask how long I would have if I didn’t have treatment and they said a few months, so I would probably be dead by now.

      Like

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