Category Archives: Velcade

Cilit Bang – User Survey Spring 2014

Today is a Friday and thus there is 50/50 chance of today being a Velcade Day. Velcade Day always promises to be eventful and by eventful, what I actually mean is a day that features waiting, a short sharp scratch or three and fatigue. The following fortnight between the next Velcade Day will feature fatigue, pins and needles, dead limbs and an attempt at living.

Today was a Velcade Day. I awoke with great enthusiasm at receiving what will now be my 51st injection of the magic bleach. Alas, that did not happen. My Velcade has been postponed due to an increase in the side effects from it, which as I have said before feels like I have rubbed my hands and fingers in fibreglass. Occasionally, it feels like I am shooting lighting bolts from my toes whilst something simultaneously attempts to remove my toe nails. More often, my limbs will go dead after a short period of rest. Since my last injection, I have also noticed an increase in me dropping things. I need little assistance in being clumsy. Last week, whilst reaching for some toilet roll for reasons that are obvious, I dropped the roll and recreated an advert for Andrex minus the Labrador puppy.

So, yes, no Velcade for me today. Instead, I get to wait a fortnight to see if things improve and the Medically Trained People will then decide what to do next. I suspect, I will continue on the disinfectant, but it will be more like a dose of Detol kitchen cleaner than the full Cilit Bang.

Recent events create a mass of questions in my head about the future and length of my remission. It is further complicated by the fact that I was told a fortnight ago that my treatment would come to an end in five more injections. The week before that I was told my treatment was indefinite and today I was told the same thing. In my life, I value consistency and people not getting my hopes up.

On the subject of consistency, as much as I appreciate everything the Medically Trained People do in the wonder of 60 Huntley Street, the timely administration of my Velcade is an annoyance. In the last 10 weeks, only one of the six appointments have gone ahead without some sort of glitch. The most popular cause of delay is due to the Pharmacy not making the big juice in advance of my arrival. The same thing happened today, it was then made by the people in white jackets, to then find out that I would not have it. Ever the cautious tax payer, I hope it now does not go to waste. Maybe that is their argument for not making it before I get there, but I am a busy woman. I do not want a two and a half hour appointment for something that can take thirty. I value my employment.

Right, I think that just about covers where we are with my treatment. But before you jump out of your socks, ecstatic that I will no longer get my Velcade fatigue on Sunday and Monday, I did still have the bone juice today. The bone juice, as much as they say it should not, has sent me to bed. And thus, the normal Velcade Day feeling resumes.

I have got that Friday feeling. I think it feels different to yours.

EJB x

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Progress

Today, I was out of my flat for a grand total of 380 minutes, but today I do not care. I do not care that it took 380 minutes to receive a single injection in my stomach, because today has been a Good Day. My walking stick is still missing and my hip hurts like hell, but I do not care. Well, I do care about that, but I am not going to let it burst my current bubble, even if the bubble proves only to be temporary.

To start with, I had not one, but three people visit me at The Clinic, which made the six hours pass with the greatest of ease. I really do have some good friends.

Today is Day 10 of my second treatment cycle, which marks the day when my immune system will start to fall. Between now and Sunday, my immune system will be at the lowest point in the cycle, which means I have to be particularly cautious, so if you see me, please try not to cough in my face. During my first cycle my immune system did not crash and I hoped and continue to hope that this remains the case for my current cycle. I said yesterday that I might start to trust my body again if my Full Blood Count results came back within ‘normal’ range, especially my White Blood Count. I am somewhat obsessed with my FCB, I blame Haemo Dad. I was rooting for something above 5. Last Thursday my WBC was 8, on Monday it was 6.66, today it was 5.5. Yes Body! Well done. Good work. I like to think that my current obsession with goji berries played a part in this result. Sure, my platelets are a little bit lower than I would have liked, but overall, this was a good set of results. Again.

This is not why I am in a good mood today. By the time I found this out, my WBC could have been 2 and I would not have minded that much. I would have moved on by locking myself in the house for the weekend and sleeping.

Today, I am in a good mood because I have firm evidence that MY TREATMENT IS WORKING! Today, I found out that my paraprotein level, the main cancer barometer for My Myeloma had reduced by 35% during my first cycle. My Doctors are aiming for a 90% reduction, but I am really aiming for no paraprotein at the end of my treatment. That is my goal, but I cannot get ahead of myself. For today, I know that in the first three weeks of my treatment, my paraprotein level reduced from 40 to 26. This means that today I know that my treatment is working. I did not know this yesterday. This means that today, I am happy in the knowledge that I am one step closer to beating My Myeloma and I am one step closer to trusting my body again. The Body, has decided at last, to play ball.

I am not going to think about the pain in my hip or yesterday’s new pain in my left collarbone. I can think about that tomorrow and maybe write an uplifting blog about Extreme Pain. I am not going to think about my hair falling out and I am not going to think about anything else that is a negative in my life.

Today, I am going to bask in the glory of knowing that my treatment is working and that all the waiting, the constipation, the fatigue and the hair loss are worthwhile because my paraprotein level is reducing and my treatment is working.

Long may this continue.

EJBx

Five Hours

This morning, I left my flat at 09:25hrs for my 11:00hrs appointment in the Clinic. The only medical requirement of the day was to receive an injection in my stomach of a medicine called Velcade. It is now the afternoon and at 14:30hrs, I have just walked through my front door. For those of you bad at maths, that is just over five hours of fun, for a single injection in my stomach.

I know that this needs to be done and although I am quite clearly complaining, I am not really complaining. I am just tired and hungry. Do you know how I know I am tired and hungry? Because my face, at this current moment in time, looks like this (it actually looks worse, but I can’t not use the filter):

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I know what you are thinking, what could I have possibly have done to fill a whole five hours? Well, see below:

• 09:25-10:20 – Travel (front of the ambulance of course)

• 10:20-10:45 – Excretion and Words With Friends

• 10:45-10:53 – Hobble to the Macmillan Support to say “Hello” and fill up water bottle.

• 10:53-11:00 – Get the lift to the Second Floor and check in.

• 11:00-11:25 – Waiting… Words With Friends, attempt to refill water bottle, write a post about attempting to fill said water bottle and find a nurse and offer to have my bloods taken in Haematology instead because they look busy.

• 11:25-12:00 – Get lift to the Lower Ground Floor, check in and wait, annoy the man sitting next to me, Words With Friends, Chemospondence, and then have my bloods taken.

• 12:00-12:35 – Get lift back to the Second Floor, toilet, correspondence, flirt with the nurses, Words With Friends, speak to Big Sister on the phone, have vitals taken and ask the nurse for my blood results. All fine and dandy.

• 12:35-12:38 – Receive injection.

• 12:38-13:30 – Book return travel and wait. Waiting… Waiting time includes getting Haemo Dad to explain my blood results, Words With Friends, talking to my favourite lady in Macmillan about my weekend and hair loss, correspondence and listening to music.

• 13:30-14:30 – Travel, this time, unfortunately is not in the front of the ambulance.

Jealous? Of course you are.

End Of Cycle One… Next!

Today, I have officially completed my first treatment cycle. That’s 21 days (actually 20 because of the bank holiday) of treatment done. 20 days done. Just like that.

My consultant tells me that I should not have expected to see a reduction in my myeloma during my first cycle and I did not. My medical team did tell me to expect sickness and lethargy from my treatment, which most certainly did happen. I was told that my immune system would be compromised during week two and that did not happen. I was told that I would enjoy the ‘week off’ in my cycle and I am happy to confirm that that most definitely did happen.

Tomorrow, I start my second 21 day cycle… During this time, I will undergo four chemotherapy sessions, ingest 160mg of steroids, have four injections in my stomach, experience at least one 30 minute session on an IV and have multiple tests including biweekly bloods. As a consequence, I am going to feel sick and I may actually be sick. I am going to get tired and fall asleep in front of people. I could get a viral infection and be admitted to hospital. I could not. I may, once again, experience insomnia and muscle spasms so crippling that I get scared and will want to be saved. I may have to endure and thus my loved ones by default, the dreaded ‘roid rage. I will probably cry and I will get angry. I am most certainly, at some point, going to be constipated. That much I know about me.

As for all the other developments and endless possibilities that can happen over the next 21 days… Who knows? I am ready for whatever My Myeloma wants to throw at me.

So, I end this blog, with how I ended my blog 20 days ago. Bring. It. On.

Bring it on Cycle Two. Please lower my paraprotein level and start to make me better. I am ready.

Dear My Myeloma. I am coming for you bitch and I am ready for your stupid side effects, whatever they may be, and if you want to play tough, then please feel free to kiss my slightly smaller arse. Regards, EJ

Boney Joney

I discovered today that I have been labouring under a misapprehension. Myeloma UK’s guidance was correct. I should not have doubted it.

Since I was diagnosed, I have believed that my weakened bones would be fixed after the first few cycles of my treatment. My consultant told me today that this is not the case. I misunderstood the Doctor’s meaning when he said back on The Penthouse that I would notice an improvement in my mobility after a few treatment cycles to mean that the lesions would start to mend and those lesions, which have weakened my skeleton would disappear as my treatment progressed. I learnt today that this is not the case. What will happen is an improvement in the pain. What will happen, all being well, is that the disease will not spread further and that no more lesions will appear. What will not happen under my trial, is that the existing lesions in my skeleton, localised to my back and spine, will heal, at least not yet.

Time wise, it is likely to take 1-2 years for my brittle bones to become strong again, and that may only be after further treatments. The operation three weeks ago, was one such procedure. Knowing what I know now, thank the gods they went ahead with it and I am now walking around with a slab of concrete in my back. There are somethings to be thankful for. This extended healing process means no snowboarding, which is unfortunate, because I have been fanaticising about doing an awesome 360 on a half pike for quite while now. That is going to have to be a pipe dream. I probably can’t even go on Nemesis. Maybe I can just have a nice bit of slicey and imagine I am on a theme park ride.

In the meantime, I hope and believe that despite what is happening under my skin, the pain is going to improve within the next two cycles. The Doctor said today that he thinks in this time, I will be able to rely less on the stick. Take less drugs. I should be able to bend over. Hell, I may even be able to lie flat. Flat! In time, I plan to deceive you all, walk tall, bend over and thrust my hips. It just means that unlike Shakira, my hips will lie.

It is not all doom and gloom, I promise, in the last three days, I have already seen a noticeable difference in my mobility. Tomorrow I even intend to walk, escorted of course, to Sainsbury’s.

I just wish I had not got this one wrong. I had thought that once the mobility and skeleton was sorted, all my attention could be focused on the cancer treatment. Now I have to focus on both things. Why is this disease so multifaceted? Why are the goalposts constantly changing?

Must not be defeated.

Trying to see the positive… Hello Freedom Pass. Hello.

Live Odds

Last week, I said that I had some good news that I was waiting to share with you. I think I can share it with you now, on the condition that once it is out there, that it is not discussed again for at least three months. This rule is for me. As it turns out, the good news is once again bittersweet. Maybe bittersweet is the wrong word. Scary and surreal. The news is scary and will involve me making a decision, that in my 28 years, I never thought I would have to make.

The reason for my delay in sharing it, is that I had to discuss the consequences with my doctors, and I had my first trial appointment today. The news is amazing and is against some significant odds… Last Thursday, my sister received a call from UCH to inform her that she was a match to my stem cell. There was a 25% chance of this being the case. I had not allowed myself to even think this was possible because the odds were so low, and I really have been suffering in the luck department of late, and when Big Sister told me last Thursday morning, I cried with relief and I cried tears of hope. It seems that my life now rests on a careful balance of odds and statistics. It is not fair, and I am allowing myself to dwell on it today, but when I wake up tomorrow, I know that I would have moved on. It is imperative to my well being and thus my recovery that I do.

A match to my stem cell means that I, hopefully, will be eligible for a donor stem cell transplant. I also discovered today that Big Sister, who is quite simply amazing, I may have mentioned this before, is not only a match, but the best sort of match for me. A negative and a negative. There are more medical terms involved, but I did not write them down, and as I said yesterday, my short term memory is somewhat lacking because I am a walking pharmacy.

So that is the good news.

The bad news, or the less good news, is that we cannot even consider this stem cell transplant until at least 90% of my MM has gone. The crux therefore, is that I have to continue with my current treatment and hope that it works. There is approximately a 50% chance of the trial working. These odds cannot be more definitive because it is still in trial. If it works, I would then be eligible for the stem cell transplant. If it does not work, then I will have to undergo another treatment programme before it can be considered. Yet more odds. I am not even considering the odds involved smashing this MM into hibernation, I daren’t.

My energy now then, as it was yesterday, is successfully getting through my trial. It has to work.

The donor stem cell transplant is called an allogenic transplant, which was described to me today as a ‘high risk procedure’. The details are sketchy, because we need to wait for the Myeloma to go before I meet with the transplant team and find out more, which will be in at least three months time. It is for this same logic, that I only discovered today what the transplant involves, the doctors did not want to get my hopes up when I was in hospital. What I did find out, and this is the scary, scary part, is that there is a 10-20% chance of mortality with this procedure. Put it another way, this procedure, historically, can result in a 10-20% chance of death. Equals my death. The risks lie in what happens to my immune system in the 6 weeks I would have to be in hospital undergoing the treatment, and the three months afterwards as my body takes to the transplant, and the odds of me rejecting the donor stem cell. Alternatively, there is a 80-90% success rate. Perversely, if successful, the transplant will give me the highest odds of a long remission before my next relapse. This means it will give me the best odds of leading a normal life. A life where I can carry on where I left off 4 weeks ago. I can meet a nice man and get married. Or live in sin. I am not fussy. The man could be a farmer and we can have special cuddles in the morning in the pantry after he has milked the cows and the kids, I may have (yet more decreased odds) have gone to school.

Understandably, I have thought about this all day and I have discussed it with my nearest and dearest. All have said, rightly, that everyday there is a chance of people dying. Every time somebody leaves their house. Or even in their house. As Big Sister said today, there is a chance of me completing the trial successfully, without the stem cell transplant, crossing the road and being hit by a car. Odds and chance. Odds and chance. Odds and chance. If I think about it this way, the odds I was given today seem less daunting.

I do not intend on thinking about all of this again for a while. Two days ago, I thought my life would return to normal by Christmas; this is likely not to be the case now. I will be going on half pay, I really am ever the pragmatist. So I have set myself a new milestone for success. My 29th birthday in May. That’s the new goal and by hook or by crook, I am going to see that birthday and I am going to have one fucking awesome party. I promise you that. I am promising myself that. For sure.

Bloody mortality. Bloody odds. Bloody chance.

I don’t want my life to rest on odds, but for the time being at least, they are going to feature. I am just going to have to try my damnedest to improve these odds, by any means. That is the way this goes. That is where my positivity comes in. Rest assured though, when I wake up tomorrow, my focus will return. My glass will be half full. My immediate focus will return to getting rid of this myeloma, as it was yesterday, and as it has been since I was diagnosed 27 days ago.

All of this, so that in three or four months time, my Big Sister can give me the best chance of living and these are the odds I like.

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