Tag Archives: allogenic

Rallying

Yesterday marked the end of five days of pre transplant conditioning. That would be, five whole days of travelling to and from St Bart’s for chemotherapy. Since the fist clenching, swear word swallowing experience of Day One’ (Day-6), I have endeavoured to be on my best behaviour when on the ward, experiencing the medical equivalent of seeing Wagner’s longest work without subtitles with an innate hatred of opera. 

I concluded that if I cannot always  service with a smile, I should be the one delivering said smile. It is something that is much easily willed than done, especially as the chemotherapy is having a negative, cumulative impact on every aspect of my body. My brain, my muscles, my bowel and my bladder feels like they have been assaulted by a BB gun and multiple sacks of potatoes. Thus, finding the energy to smile, let alone speak, does not come as easily to me as it usually, all so naturally does.

I have been attempting to rally myself into a state of positivity, but for me, this last five days at least, it is not something I have been able to do all on my lonesome. I have needed assistance. Poor Mamma Jones has been on the other end of the phone wishing she was in London. I even admitted to my friends that I was in need of assistance. Assistance being in the form company to make the hours in the clinic more bearable. Assistance to remind me that this is only a temporary measure, that won’t go on forever. Special kudos has to go out to Housemate who fought through what I can only imagine was a horrific hangover on Saturday to be at the hospital for 9am, returning home at 5pm. Yesterday, he even did my dishes, which is unheard of. 

In all honesty, this cannot be done alone. Yesterday, I forgot to brush my teeth, which I am sure was a pleasure for the Medically Trained People who had to get remotely close to my face. Even with a support network, the treatment is isolating.  If I feel like this now, who the heck knows how I will feel in a few months time?

In terms of the immediate side effects,   the hiccups have been plaguing me since yesterday, and when one looks like this post chemo, imagine what I look like mid multiple jerk:

 
Today, I have a ‘day off’, but this still involves heading into the hospital for blood tests. Big Sister also arrives in the Big Smoke for her part of the process today, so it seems only fair that I meet her to express some of the inexpressable gratifitude. 

Prior to last Thursday, I was told that I would find the conditioning relatively easy in comparison to my previous treatments. I wouldn’t go out and out and call this a white lie, I just think it’s difficult to be comparative to my past experiences when my current experience is so foul.  I might have fouled myself twice in 2013, but that is no consolation when I cannot take my morning medication without vomiting or distinguish whether ‘consolation’ is the correct word to use here over ‘consolidation’. 

We all know how much I love to talk about my toilet issues, so imagine the complex situation I found myself in on Monday night, four days without passing a number 2 whilst experiencing a cystitis-like pain from the cyclophosphamide. Every effort to unleash the stool, angered the other thing. It was a pain that could only be muted by taking two diazepam to permit a long sleep. It was a temporary reprieve, for it was still an issue present upon waking, but, hey, at least I got some sleep. Last night on the other hand, my sleep was interrupted five times to pass water because of the cyclophosphamide. 

The last five days have been relentless. With an auto, it’s one day of treatment than the transplant. The horrible side effects hit you later. I will probably be thankful when what experienced in 2013 doesn’t hit me, but right now, I just really, really want a week in my bed to recover. I know I am a good few weeks away from this luxury. 

So, in the meantime, I just have to rally. Rally and remember the key words that ‘This Soon Time Pass’.

  
EJB x

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Doubt

On Thursday, I met with the transplant team, well, a transplant doctor, and I was introduced to the wonderful world of transplant options.

I have made my decision now about what transplant I will have, but it was useful to go through the options once more, so I have a rough idea of my future options. The one thing that became patently clear during this consult is that I will always be plagued by doubt. I will be plagued by doubt that I have made the wrong decision about my treatment. There are no guarantees in myeloma treatment and the truth is, nobody knows what the right answer is, until after. After I am gone, or if I am lucky, if I made the right decision and all is going well in twenty years time.

First things first, I was a fan of the doctor. He introduced himself to me by his first name and this does not happen often. In fact, it has not happened since my diagnosis.

In terms of transplants, there are three available to me, well, three and a half. The half is dependent on my results after the auto. Each option, is about time, my time left, and odds, and nobody knowing what is the best one for me. I suppose I am fortunate to have these options, because many people don’t. People do not have a sibling donor match and for those people, the auto and drugs is the only option. I have to see that my sister’s gift is a benefit to me, I just wish sometimes that it was not me making the decisions. There are too many variables.

Now, it was useful for the doctor to speak to me like I was not medically trained. I was provided with a helpful set of charts, which shows the risk of the procedures against the chances of the myeloma returning. Visuals are always of some assistance.

Auto
The first option and the most traditional, is the Auto. My stem cells. This has been around for longer and the stats, it’s always about the stats, say that there is a 2% mortality rate during the procedure. The procedure comes with a guarantee that the myeloma will come back, but nobody knows how long it will be before it does. Maybe a year, maybe three, maybe longer. Nobody knows. This is what I am having.

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Allo
This involves donor stem cells entering my body. The procedure comes with a 30-40% mortality rate, but a 40% (according to this chart, although I have heard 10-15%) chance of a cure. The big C. The Cure. I have spent a considerable amount of hours considering this, and the truth is, I am not ready for the risk. I want to live now. A one in three chance of dying, that may or may not come with a cure is not a viable option for me right now. I could put my body through all of that for nothing and then run out of options. I am not there yet. I am not ready to die and the chance of a cure is too small for me to run that risk. You may think that this decision makes me a wuss, maybe it does, but I am not betting with my life. Not yet.

Here’s the problem then, if I decide to have one later down the line, the mortality rate rises to 60%. I am not there yet.

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Reduced intensity
Now, this one is complicated. My understanding is that it is a reduced version of the Allo, which comes with a little bit of my own. This procedure has a 15% mortality rate. The Medically Trained People disagree with each other over its effectiveness because this, in the terms of myeloma is relatively new. Not new, but the stats cannot tell you if it can be a cure, because there has not been enough time to prove it. They do not routinely do this at UCLH. But, they do have a trial to see whether doing this reduced intensity directly after an Auto (three months after), has long term benefits. I would be willing to give this a go, but my body would have to behave during my auto to be considered. We know my body rarely behaves.

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Another problem I have, in addition to the risk of death and not knowing whether the decision I am making now is correct, is that my sister is not an ever ending resource to me. If at any time I have hers and I experience something called graft versus host disease and It comes back, then I cannot use her stem cells again (well, theoretically I could, but it would not be useful). Though, confusingly, a little bit of this disease is a good thing; it fights the myeloma. A lot of it is bad, it means long term illness or, you know, death.

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I know I am not a statistic, I am a person for the doctor told me so, but I do need to listen to the stats. At the start of all this, I was up for the Allo because it comes with the possibility of the Big C. Now, I have had the time to think about it and what the procedure means and where I am with My Myeloma, and what I want is time. I want time to live. Hypothetically, the Allo could give me more time, but it could also take it all away much, much sooner.

With all things myeloma, I think that time will help. Whilst the Medically Trained People may know what drugs are coming in five years time and the Big C is not in that bundle, there may be something in there to prolong the inevitable. Or in ten years. Nobody knows the answer.

For now, I am going down the safer route and I have to live knowing that my decision may be the wrong one.

β›”

Now then, what’s for tea?

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