Post 16 – Status Quo

Today, we decided to challenge the status quo. 

Nearly 3 years ago, after six months of intensive chemotherapy, I had my first Stem Cell Transplant due to my myeloma. Once that had finished I started on a maintenance therapy called Revlimid – the aim of this drug was to prolong the length of my remission before relapse. I was also put back onto Zometa, a bisphosphonate drug that is used to strengthen bones and prevent bone damage for myeloma patients (and other people with other conditions!)

And for the past two and a half years, I have pretty happily been continuing on these drugs without challenging the situation too much. We knew that zometa stops the bone from ‘turning’ as it does in a normal person, and that there was some concern about potential long-term damage with this. We knew that a trial a couple of years ago had thrown open concerns about secondary cancers due to the use of Revlimid in patients for over two years. But we had discussed it and come to the conclusion that since I was unlikely (although there was a small possibility) to live for much more than 10 years, that these side effects were worth the risk. 

Recently though, and as per ‘Post 14 – The future is bright, the future is Orange‘ I truly now believe that there is a strong chance, please help me, that I will live for a lot longer, I hope it will now be a matter of decades rather than years. So of course, that raises the question of whether these drugs are the right thing to be on, in the longer term. So today we went to talk through the long-term implications and the benefits. It isn’t a straightforward answer, and it is probably one that every patient will think about differently, but we have now come to conclusions that we believe are right for us as a family.

So Zometa first. It sounds like there are more benefits to this drug than I had realised. Apparently, not only does it help to strengthen the bone, but it also acts to stop the bone marrow from acting as a ‘fertiliser’ for myeloma cells by changing its structure slightly. There is the thought therefore, that as well as making my bones stronger so that I am less likely to suffer from bone damage, it is also likely to prolong my life. There is still debate on how frequently you should take it, so that is definitely a question for me to consider, but in terms of whether to take it or not, my decision is made and I’ll be staying on it. Any drug that doesn’t have major side effects but has a chance of extending my life, is something that I will seriously consider!

Revlimid is a little more scary. There was a French trial just after I started revlimid as a maintenance therapy. I had also had this drug prior to my transplant (for 4 months) as a main treatment. Halfway through the trial there was an indication that perhaps the use of revlimid led to increased risk of secondary cancers. Arrrggghhhh…..now what to do? But again, we talked to my consultant a year or so ago, and decided that the fact that life expectancy wasn’t huge, meant it was worth the risk. But what about now? It sounds like there is still a risk, but after further investigation, not quite to the same degree as before. They have identified it as being more of a risk of a secondary blood cancer such as leukaemia, skin cancer or breast cancer. Not particularly nice. But it does sound like whilst there is a significant (in terms of qualitative data) risk, it is a very small risk. AND more than the risk, it is quite possible, and I might go as far as to say, quite likely, (my words, not my consultants!) that it is the revlimid that is keeping me in remission in the first place. Even if it isn’t, the psychological impact of coming off it, and feeling like it was what kept me safe, could be damaging in itself.

So, we will take the risk again. And keep our fingers crossed that we don’t have to face into another world changing diagnosis in the future. I will keep an eye on my skin, check my breasts regularly (as all ladies out there should do anyway!), and basically keep an eye out for anything that changes. Without, I hasten to add, becoming obsessive about it. I may have made it sound really scary here, but I have to say, as my lovely consultant put both sides of the equation to us, it did make sense to continue down the route we are already on. The door stays open with both drugs to change our minds at any time, and so for now, we will carry on but keep reviewing it on a regular basis.

This wasn’t the only thing that we were asking about to. Many of you will know that it is a 3 hour round trip to the hospital each time I go. This isn’t so bad whilst I’m only going once a month and I’m in remission, but if I’m ill (like I was at Christmas) or if I relapse, intense inpatient care can be quite draining. In December, I went to the Churchill in Oxford for treatment and was amazed at how lovely the hospital was and the care that I got there. We had considered changing hospitals, but weren’t keen due to the fact we knew my consultants and specialist nurses well at the Marsden. And the Marsden IS deemed to be one of the leading oncology hospitals (if not THE leading hospital!). But recently we found out that not just the top consultant was leaving, but with him, was going my consultant. Again, another choice. But again, we have decided to stay where we are. Myeloma is still pretty rare, and there aren’t many hospitals that get the main trials as soon as they come out…or perhaps it is more accurate to say that they instigate those trials….I’m not sure. The Marsden does and because it has a larger clinic it has more patients to start trials with.

There is also the fact that myeloma isn’t considered to be a ‘young persons’ cancer. (Please don’t laugh nephews and nieces…I know I’m not young to you, but I am to the 70+ year olds out there!). At smaller hospitals, with smaller clinics there is a chance that there are less young people for staff to work with and therefore I am more likely to be a ‘minority’ where at the Marsden I am sadly, one of far more. 

I feel pretty content with the decisions that we have made. I hope that I will stay that way!

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1 Comment

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One response to “Post 16 – Status Quo

  1. That’s very thoughtful and interesting, Deb, ( particularly as I am now on the same drugs – one of the much older age group ! ) and makes a lot of sense. Good thinking, I reckon, and you are right to be optimistic regarding the future. Jeff

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