Tag Archives: zometa

Nothing is Forever – except a cancer diagnosis

Once you have been diagnosed with cancer, life changes forever. For you and for your family, it is unlikely that you will ever look on life in the same way. Sometimes that can be amazingly positive, and sometimes, sadly, it is soul destroyingly awful. Whether you get through treatment and survive, whether you get through treatment and relapse, one thing is true….a cancer diagnosis is one of the few things that is forever.

I think I would be right in saying that in general, Nick and I have been massively positive in how we have lived our lives since I was first diagnosed with myeloma in 2009. It was obviously a massive upheaval to our lives in the early days, and hugely scary to think that our children might not get many years with me. But, as we went through the treatment regime, we got stronger and stronger together. I think we learnt to accept the myeloma as part of our lives, and for me, I did my fundraising as a means of controlling it. And in the main, my myeloma is NOT my life….it is just that unfortunately it has a nasty way of getting away of my life when I don’t want it to.

I will always remember a strange part of the journey where I just wanted the treatment to start – I wanted an end to the ‘unknown’ and I thought that once I had my chemo and transplant and had recovered, that life would go back to normal. Little did I realise, that the ‘unknown’ never really disappears with myeloma, you never quite get to sit back and totally relax, especially when you are at hospital on a monthly basis for your maintenance therapy. But even without that, I would imagine us mm patients aren’t unique in the fact that the word cancer is always there, hidden, in the back of your mind and in the way you make decisions.

In fact, you end up living with a kind of guilt and frustration that are hard to put into words but I am going to try to.

I know, from the bottom of my heart, that I am REALLY lucky to still be here today to write this. I know, that when I was diagnosed 8 years ago, that I thought I would have gone by now. I know that I have said goodbye to too many myeloma friends that I have met on my journey, who have not had the positive response to their treatments, that I have had. I know that my life is pretty good when I take that all into account.

But I sit here writing this feeling nearly as sad as I have done in a long, long time. Why? I am ill again. Not badly ill, but ill enough to lay me up at home for a number of days (expected to be at least a week) and to make me dependent on Nick and the kids for everything. This comes on the back of looking after my son having the same thing for two weeks and at the same approximate time, breaking a bone in my foot for the 3rd time in 2 years.

The reason for these things? Well, my immunity is permanently low due to my maintenance therapy and my myeloma so I pick things up pretty easily. Whilst I am much more relaxed about being around people these days, I still rely on people to make sensible decisions about seeing me when they or their kids are ill…otherwise it can lay me up – and that isn’t fair on me or the family. And my breaks? Well, I still that they are due to the bisphosponates I was on for so many years….but I’m no expert.

The reason I thought I’d write is because I want to help people to understand how hard it is to live with cancer ‘under the surface’. To everyone around us, I am now pretty healthy…and I am in comparison. I look well. I smile (most of the time!). If people ask how I am, I rarely talk about the myeloma anymore. But behind it all, Nick, the kids and I, have to deal with so much more on an ongoing basis.

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I am lucky to have the most supportive husband I could ask for. He drops everything when I am ill or hurt and makes sure he is there for me. But this time, I think it has hit us both emotionally and we are both exhausted from what this life means for us at times. I think we want to think life is normal again, but the reality is that ‘normal’ isn’t what it once used to be….and I don’t like the new normal that much. I’m someone who is active and on the go all the time, but if I do that now, it makes me ill and the family suffers. I’m not sure how it impacts the kids…..they don’t really talk about it, but I see them so concerned when I am laid up in bed with a temperature, again. I think they’re ok. I dearly hope they are.

Even with work I find it so frustrating. Given how much I have been ill/ injured in the last couple of years, I can’t think of many companies who would take on someone who worked like that. And if I take on a role that is too stressful, it makes me ill. So I’m trying to set up my own business doing social media and admin pieces for small businesses who don’t want to do their own….fingers crossed that doesn’t lead to more stress than is good for me. The reality is there is no ‘standard’ job out there for me that works though, so it is this or nothing….and that feels hard in itself.

And all of this is with the knowledge that my paraproteins are very slowly creeping upwards. They are so slow it will probably be a couple of years before anything needs looking at, but unless you are living with that, it is unlikely that you can begin to understand how that plays around in your head with every decision that you make. One minute I’m talking about us in our retirement together and the next we’re having a reality check and discussing the alternative if we knew we only had another ten years together……..an eye opening discussion I can promise you…which limits Nick massively, as well as me.

But if you ask me next week how things are, I’ll likely tell you it’s good, smile and carry on….

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My myeloma pharmacy

So, recently a few older friends of mine have asked what’s going with me and my myeloma, and whether I am still on drugs!

Luckily, the answer is that not an awful lot is happening with my myeloma. I am still classed as being in ‘Very Good Partial Remission’ and my paraprotein results (the measure by which they try to monitor my myeloma), are still relatively low at just over 4.

It’s not quite as simple as being in remission though. To keep me there, I have been on a drug called Revlimid (Lenalidomide) as a maintenance therapy. After the initial period being on this, and being ill most months, they managed to get my dose to one that doesn’t lower my white blood count too much and so I take this drug for 2 weeks in 4. I honestly believe that my access to this drug, keeps me in remission. images-80I’m really lucky too that I got it on my trial as it isn’t yet available as a standard maintenance treatment as it is too expensive….£500 per day I believe! However, I’ve been in remission for nearly 5 years now, so it’s definitely done the job for me.

With my recent foot breaks, I’ve now made the decision to come off my bisphosphonate, zometa. Zometa is used to help strengthen the bone but in reality what I think it does is keep building bone, but the breaking down part of the bone cycle is stopped. This is ok perhaps with older patients, but for people like me who have been on it for 7 years now, my fear is that it has made my bones a little more brittle than normal. Please note though that this is NOT a medical diagnosis….just my thoughts on the matter! It would be interesting to know how many myeloma patients out there have issues with breaks in their extremities….and how many of them are on either zometa or revlimid as I’d love to know whether the drugs have caused the breaks that I’ve suffered in the last 2 years.

Other than that, I take aspirin, and I have to take drugs for bile malabsorption. For those of you who suffer with emergency toilet needs, it is definitely worth getting checked for this latter condition, as I have to say, the drugs I take for that now keep it totally under control….so long as I remember to take them!

It’s a bit of a pharmacy of drugs but all in all, my myeloma is kept well in check and I am able to live a pretty normal life. For all the conspiracy theory on pharmaceutical companies and cancer drugs, I am very grateful for the ones that I have 🙂

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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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