Confused, Down and unsure…

So things are a bit up in the air at the moment….and anyone who knows me will know that I hate it when life is like that. I am a control freak and there is no doubt about that. I like to know what is going to happen from one week to the next. Hmmm, things couldn’t really be any more different than that nowadays and I’m struggling a bit at the moment. 

Where do I start? I suppose the feeling of slight depression began when I went to hospital a couple of weeks ago. My main readings are great! My paraprotein levels have dropped down from 2 to 1…..originally pre-transplant, they had risen to 50! So there is nothing to be concerned about there…the paraprotein basically is a good indicator of whether or not my myeloma is active, and when it starts to rise again, the consultant will begin to worry! For the first time in months, I wasn’t neutropenic either so I was feeling pretty positive (When you are neutropenic, you aren’t ill, but you are at risk of catching infections). But then came the news that my consultant didn’t want me to continue self-injecting the G-CSF injections that I’d been having to raise my white blood count and prevent neutropenia. This was partially because they’re not great for you in the long run, but also because they made me achy and fluey for 24 hours after I’d had them. But if I just stopped taking the injections, it was strongly believed that I would become neutropenic again as a result of the maintenance therapy that I’m on at the moment, a drug called Revlimid (Lenalidomide).

I’m really lucky to receive revlimid as maintenance therapy as most patients ‘off-trial’ don’t get it, but I got randomised to have it through the Myeloma XI trial that I’m on. And to me it feels very much like a life-line….like without it I might relapse…and relapsing is my worst nightmare and one that I have pretty much banished from my thoughts while everything has been ticking along nicely. So what does my consultant want to do….well she’s now reduced my revlimid to being 10mg two weeks out of four…it used to be three weeks out of four. I have to get my bloods done half way through this cycle at our local hospital, and assuming that they are fine, we carry on with that protocol. But if I’m neutropenic yet again, they will revisit my drug levels again and probably reduce the revlimid even further. Don’t get me wrong…I’m not stupid and I know that the revlimid may not be the reason that I am still in remission. However, I really don’t like the idea of changing anything that is working. So all my fingers and toes are crossed that next week when I get my bloods done, that things will look nicely positive and I can stay on revlimid as it is now.

But my drug situation isn’t the only thing that I am finding hard at the moment. Work is posing a massive challenge. I absolutely love working for the charity I’m working for. They do a brilliant job, are on an exciting journey forward and are a brilliant team of people. But I’m really struggling with the level of flexibility that the role requires and the hours that I need to put in to do the job justice. And with a charity job, especially for a charity as wonderful as this one, you really can’t do a half-hearted attempt at working. The problem for me, is that the work is making me exhausted and stressed…..and I know that stress is a bad thing for myeloma and is more likely to make me relapse. Which ironically makes me more stressed as what happens if I ignore how I feel and get ill! 

I’m talking to them as we speak so they know how I’m feeling and hopefully we’ll come up with a resolution in the next couple of weeks. But I know deep down that I can’t keep things up as they stand at the moment. Fingers crossed we can make it work…..I love working and I love working for them, but the last thing I would want, would be to be a burden to a charity that uses its fundraising for such a good cause. I don’t feel I can expect anything from them, as it takes away from the people that we fundraise for…..sort of defeats the objective!

So watch this space to see what happens moving forwards….I can’t bear the idea of being out of work again as I’ve loved the independence of working and bringing in some money to the house…we’re off to Morocco in August and who know’s if we’d have afforded that without me working. But it isn’t worth getting ill for….

So busy, don’t have time to wipe my…….

I’ve had a gentle nudge recently about the fact that I haven’t updated my blog for so long! And they’re right….there’s no point having one if you never write in it. 

There are a couple of reasons that I haven’t updated it. The first is work, and I’ll update you on that in a moment. The second is that I’ve been struggling a little with why I write my blog, whether it is worth writing it, and whether it looks very self-indulgent. I think this has been exacerbated recently having been following a different blog which, to me, whilst very well written, seems remarkably self-centred and theatrical – I have stopped reading it due to the frustration that it caused me to feel. But it made me worry a little that people may feel the same about me and my blog and the thought of that made me positively flinch! So I’ve spent the last month or so considering whether I should continue with it. But in the last couple of days, I have reminded myself that I started this blog for me and not for anyone else – on that basis, it doesn’t really matter what anyone else thinks. Now, any of you who know me well, will know that last statement is a bit of a joke really as it always matters to me what other people think. But, what has happened this week is that I had a really lovely email from someone who got in touch with me 2 years ago and who follows my blog. They thanked me for the support it gave them and the help it provided while they went through their SCT – and it made me cry that I had managed to help even one person through writing it. To me, that is what makes it worthwhile.

So, I will continue to update it, although quite possibly it is going to get limited to the holiday period when I have a little bit time now that I’m working! Working… good does that feel :-) I am so pleased to be back using my little brain and earning some money towards holidays etc! I have just had my first full pay check and god, did it put a smile on my face. It won’t change the world, but being back at work, makes me feel like I know what I am about again and that is a great feeling. The job is hard work…..but totally worthwhile as I am 100% committed to the organisation. I just need to work out my work-life balance, and stay well at the same time, and it will be absolutely perfect! As Nick says, we are still in the early days, so it is no wonder I am exhausted at the end of the week. And perhaps I will never be quite 100% as fit as I was before I had the transplant….but I’m definitely at 95% and that feels great. But to all of my friends, here is an upfront apology if I am a tad rubbish at staying in touch – it isn’t anything personal, just me getting used to work and drugs at the same time :-)

I’m also not sure whether I should mention this next thing….someone in the charity sector recently said that they thought it was brash to brag about achievements in fundraising etc.Image However, I am going to mention it….not purely because of my involvement but because so many of you, my friends and my family helped me to achieve it. Recently the chair of Myeloma UK asked me to meet her for lunch and she presented me with a beautiful engraved photoframe celebrating the £70,000 that we have raised over the past 3 years. And it really isn’t just me….so many people have helped me to raise that money and to spread the work about Myeloma UK and the work that they do. So whilst it is nice to be personally recognised, it really has been a massive team effort. And an especially big thank you should go to Nick, my Glitz and Glamour team (and their partners who put up with them helping me) and also my lovely 80 year old parents who have raised thousands of that total by doing fundraising with their church – it just goes to show that you are never too old (sorry mum and dad, I know you don’t think you’re old at all!)

So, what other news is there….not much really. Healthwise things are fairly stable. I seem to have a permanently low white blood count these days and I believe that this is to do with the 10mg revlimid that I take as maintenance therapy. However, the hospital is now working on a preventative basis and I receive G-CSF injections each week to try to boost my immunity and stop me from becoming chronically neutropenic. This seems to be working fairly well and stops me from being ill, although the slight downside is that it does cause me to feel fluey and achey the day after I inject. Still, it is far better to be well most of the time and at least this way, I know what is coming and can plan not to be socialising etc. I am not sure if it means that I am coming to the end of my time on revlimid….I really do hope not as it feels like my lifeline. I am sure I am wrong there and that my remission would have existed no matter what, but once you are on something like this, it is hard to think that it isn’t your miracle cure!

Finally, and because I am totally mean and want everyone else to cry like I did, I want to share a link to a podcast that I found inspirational and that really sums up how I feel about much of my life now that I have to share it with myeloma. This guy was given a terminal diagnosis so was in a worse place than me, but much of what he says rings very true…the patient guilt of having cancer etc. However, before you shut off, he is a very funny guy and the interview is uplifting and honest. Take a look at Steve Evans on the 16th May – it is available for another 19 days – I wish I could save it some way! He is pretty remarkable.


QOL Studies Needed After SCT

“Quality of Life (QoL) is a phrase used to refer to an individual’s total wellbeing. This includes all emotional, social, and physical aspects of the individual’s life. However, when the phrase is used in reference to medicine and healthcare as Health Related Quality of Life, it refers to how the individual’s wellbeing may be impacted over time by a disease, a disability, or a disorder.” – Wikipedia I don’t […]

Fighting Secondary Cancers

I’m cheerful today, after visiting Mayo Clinic for the end of the 38th 28-day cycle of pomalidomide. IgG is up a paltry 3%, from 1170 to 1200 mg/dL, but M-spike is down a whopping 17%, from 1.2 to 1.0 g/dL. I don’t actually believe that my monoclonal proteins dropped that much, because last month’s figure was a medical impossibility (higher than IgG), but it feels good anyway. See, it doesn’t take a lot to make me happy. We celebrated with a couple of bowls of kettle-popped organic popcorn.

STABLE is the proper description:

The myeloma is stable. IgG has varied between 923 and 1350 mg/dL since July of 2008, two and a half years. I just want to stay on this regimen forever, running marathons and otherwise enjoying life. It doesn’t work that way, but so far pomalidomide has given me nearly three years of normalcy.

When pomalidomide fails, what’s next for me?

Every treatment fails eventually – that’s a dependable feature of myeloma. Apparently, though, I will have plenty of options. I’ve had thalidomide, pomalidomide, dexamethasone, and low-dose naltrexone so far, no other doctor-prescribed treatments. There are Velcade studies at Mayo right now, and Carfilzomib, plus several new agents which work in magically new ways. Dr KDS mentioned Phase I, II, and III trials – lots going on, and I might be eligible for several of them. I’m feeling good about the future.

We even discussed bone marrow transplant, but I’m not sold on that, for me. I have a slow-moving variety of myeloma, and I’m hopeful that it can be managed by using the existing treatments in a serial fashion and, perhaps, by taking advantage of new ones as they come along. The cure for myeloma is to live long enough to die of something else, and that’s my plan. Meantime, life is to be lived!

What About Secondary Cancers?

There is new evidence that long-term treatment with Revlimid, such as Revlimid maintenance after a transplant, may result in an increased risk of second primary cancers including lymphoma, leukemia, and solid tumors. The risk is still low, perhaps less than 5%, but studies seem to show that it is somewhat increased compared with people not on Revlimid maintenance. Doctors are trying to quantify this risk now, to determine whether it says anything for or against long-term maintenance. The Myeloma Beacon has a very current article on this issue.

So what about pomalidomide? Thalidomide, Revlimid (lenalidomide), and pomalidomide are all immunomodulatory drugs (IMiDs). They all “modulate” the immune system, suppressing it to some extent, in their multi-pronged campaign against monoclonal plasma cells.

THE FOLLOWING ARE THE SUPPOSINGS OF A NON-DOCTOR. READ AT YOUR OWN RISK: We know that an important role of the immune system is to kill cancers before they can get started. The DNA of a cell goes wacko (technical term) for whatever reason, say a coincidental zap from a gamma ray that left the star Alpha Centauri 4.2 years ago, or a treatment by an alkylating agent like melphalan, or a radiation treatment for something, or even a PET scan. The immune system detects the wacko cell and swats it down. Game over.

If the immune system is suppressed, however, maybe it wouldn’t detect the wacko cell, or maybe not until that naughty cell has multiplied and the group has become too strong and adaptable for any immune system to swat it down. Thus the drug doesn’t actually cause the cancer, it simply opens the door for it. Again, this is all supposition; I am not a doctor.

If something like that is happening, though, we might see secondary cancers in people taking other IMiDs like thalidomide, if we look, and eventually perhaps in those of us taking pomalidomide. Dr KDS says that there really is no information on that last point yet. Pomalidomide is too new. I don’t know if anyone has yet looked at the information that does exist. But I do know that I’ve been on pomalidomide for nearly three years now, and that easily qualifies as long-term treatment. There was no transplant, but this is maintenance nonetheless.

How Do We Fight Secondary Cancers?

Job One, of course, is to discuss this with our doctors, and keep ourselves up to date.

Job Two, in my opinion, is to live a healthful lifestyle that fights cancer. That is a huge subject covering nutrition, exercise, sleep, addictions, and much more. It is, however, more or less in our own control. We can influence our own futures and make it more likely that we’ll be here for our grandchildren. I’ve been thinking about writing a book about this (of course there are books out there already), and may blog about it, but here are some simple principles:
Nutrition: We simply avoid eating anything that does not contribute to health. Does soda contribute to health, or a jelly doughnut, or french fries? Of course not! So we choose a healthful alternative, like charged water, a slice of organic whole-grain bread with a little organic raspberry jam, or a banana. Further, we go for the very best foods, especially fruits and vegetables, organic where suggested by the “dirty dozen” lists. Good nutrition contributes in two ways: (1) we avoid ingesting foods that cause cancer, foods full of pesticides, bad fats, and empty sugars; and (2) we do eat high-quality foods containing nutrients that our bodies need to build a competent immune system, including antioxidants and other micronutrients. We are what we eat.
Exercise: Some is good, more is better. A good goal is a half hour, five days a week. We three try for an hour and usually make it. A balanced program, aimed at improving overall health, will include some resistance training (muscle building) and some aerobic exercise, with the prior advice of a doctor of course.
Sleep: How can our health be at its best if we shortchange ourselves on sleep? Studies show that most people need eight hours, some more and some a little less. One test: if I need to use an alarm clock to wake up, then perhaps I’m not getting enough.
Smoking: Oh, for God’s sake, if you still smoke, do whatever it takes to stop. No excuses – it’s killing you and everyone around you. Rehab if necessary. If you live with a smoker, move out.
Overweight: Overwhelming evidence points to overweight as a serious cancer risk. If you are obese (BMI 30+), or even overweight, please find a way back into your bathing suit, whatever it takes. This will require a serious lifestyle change – you will fail if you think it might not. Talk to people who have done it.

We three have followed these principles for years now. Does that mean we won’t get additional cancers? No, it means that our risk is lower than it would be otherwise. That’s all that any of us can do.

Some Current Test Results: