Category Archives: Padimac Trial

What Next?

Today, I have had my final dose of Velcade. This means I have had my last dose of treatment on the PADIMAC trial. It would be unfair of me to say that PADIMAC has failed me, for I have had a partial response, however I did not want a partial response. I wanted my paraprotein to go down to 0. I wanted to be able to harvest my eggs and my healthy stem cell. I want to be going back to work now. I want to have hair. Eighteen weeks and two days ago, I thought that the above would happen. Well, most of it. After my first cycle, I was sure of it. I thought that at the start of 2013, I would be better and that by now, I would be getting ready to return to work, just potentially with slightly shorter hair. I still have hair and the hair I lost is starting to grow back. It need not have bothered for I’ll be shaving it off in a month. At the time I thought my chance of having my own babies was nonexistent, which is good because I prepared myself for the worst. As it turns out, at this moment, I can still have babies; it is unlikely that I will be able to have my own babies in two months time. Thank goodness I prepared myself for the worst.

Over the last eighteen weeks, I have had six cycles of treatment involving 66 pricks of a needle, a facial hair load of steroids, chemotherapy, received a stomach full of scars and produced two buckets full of my pee as well as seven egg cups worth. In this time, I have learnt how my body will feel within in each three week cycle. Every side effect I know and I can manage them, even the horrible ones. I know when I cannot get out of bed and I know when I can. I know when I will not be able to toilet and more often than not, I know when I can. I know when I will not want to eat nor drink and I know when I will. I know when I need to speak to the Medically Trained People and I know when I don’t. Knowing all these things means I know when something is wrong, because my experience tells me so. I do not know what my future holds.

I have a rough outline of what is to come and I have a rather horrible decision to make before that. Regardless of my decision, I know that the treatment to come is going to make me feel more ill than I have ever felt before. I face at least three months of a low immune system, and during that time, until my blood count returns to normal, every sneeze, headache or frustrating stool is going to come with a waterfall of paranoia. Any immunity I have built up over my 28 years will be lost; my body will start afresh. Hopefully.

As for my future treatment and the transplant, I am terrified. I am so scared about the side effects, the chest line, transfusions, missing my flat and death. I don’t want any of it, but I know that all of it bar the latter, is necessary. It will happen. It is happening. I want to get better. Correction, I need to get better. To curb my mawkish thoughts, I have to remember one thing. I have to remember that I got this far. I got through my diagnosis and I now understand what is happening to me. I got through my eighteen weeks of treatment and everything that entailed. I have got this far with my head held high and with my personality still intact, albeit, clinging on for dear life. I did it.

And by hook or by crook, I will get through this next stage, as scary as it seems now. I have to. Every part of my treatment is a means to an end. I have said that from the start and I will have to continue to say it regularly because it is true, and because I now suffer from short term memory loss.

For now, I am going to enjoy my four weeks off of treatment. I am going to build up a bank of positivity because I know I will need it.

A means to an end.

EJB x

Advertisements
Tagged , , , , , , , ,

Day 1, Cycle 6

I was in such a good mood this morning.

Today, as it turned out, I had cancer. I spent seven hours and fifteen minutes at the hospital waiting for today’s treatment of Doxorubicin and Velcade and transport. It is Day 1 of my last cycle on PADIMAC. The rest of my cycle better not be like this. Please. I need a life that is not just this.

On Day 1, before I get my main drugs, I have to have a blood test, my vitals, a pregnancy test (to confirm, despite several imaginary attempts, I am not pregnant) and receive fluids and anti-sickness medication. All in, it should be done in 90 minutes. Today, everything and anything after midday was a shambles and the 90 minutes was but a dream set in a meadow in the Spring, with me wearing white and doing carthwheels.

I had counselling this morning at 11:00hrs and landed on the second floor at 11:55hrs. Fine. I was jolly, the counselling was productive and my outfit only contained some black today. Being the selfish person I am, I had already informed the hospital that I had been double booked and asked that I be checked in at 11:00hrs still because I have now experienced ten Mondays before this one, and know that they run slightly behind schedule and offered to have my bloods tested elsewhere to speed up the process. It did not speed up the process.

I understand that there are staff shortages and the nurses cannot come in if they are sick, but this is the excuse I hear every Monday and to be honest, Tuesday. I am 28 years old and want to live as much of my life as I can, but alas, today was wasted sitting on a chair with only my tired brain for company.

My day actually started at 09:00hrs, at which time I was ready to leave the flat as instructed. Once I realised that it was going to be at least a nine hour day, I spent 90 minutes crying (on and off) because I had to cancel my plans this evening, because it dawned on me that I could no longer have the time to fulfil my Christmas Baking Gift Challenge and because all of it was completely out of my control. My day was about My Myeloma and only that, and there was absolutely nothing I could do about it.

I suppose, I cannot complain too much, for my lunch was provided, and I am a very lucky to have had the corned beef sandwich on white. It was a culinary delight. Okay, I am reaching here, but I do not want to be a completely negative person. My heart is warm and I am kind. I am not usually somebody who is rude to her nurse.

As well as the above, today I learnt, in the context of cancer and the cannula what ’tissued’ means. It is not pleasant. My cannula was fitted two hours before I was attached to anything, the first being the anti-sickness drug. There were no issues with the application, it flushed well and it was almost pleasant. I gushed. Somebody then, during the two hours wait, moved, a lot it would seem because somebody managed to bend the cannula so that it was no longer in a vein. Unfortunately, this was only discover after they had tried to put the drugs in my arm, which then looked like the photographs below but worse. For a period, my arm looked like it had half a golf ball in it. It’s going to bruise and the vein is still like one of Madonna’s..

20121217-235848.jpg

20121217-235854.jpg

Oh, and I managed to fracture another rib last night in my sleep. In my sleep. Score.

So that was my day. It sucked. I am exhausted and cannot write nor speak with any enthusiasm.

Tomorrow will be better.

EJB x

Tagged , , , , , ,

Day 7

It’s Sunday night. I have made it to Sunday night. I have also managed to wash myself. Twice. I have left the flat once. In your face fatigue. Just to remind you, the above is the sum of my achievements since 16:00hrs on Thursday.

I have no idea how many hours I have slept nor the time I have spent lying in the dark, but I do not care. I am just happy that it is Sunday night and that I have made it to this point with only the one private temper tantrum. Disney helped.

The end is in sight. Until next time…

Tagged , , , ,

Knight Of The Living Dead

It’s Day 5 of the Fifth PADIMAC Cycle. Look at my face. Look at it.

Do you fancy being my knight in shining armour? I’ll pay you back with really fun things in about six months if you just come to my rescue now… I’ll buy a book and ask for more radiotherapy to make it worth your while. Remember, I’ll be skinnier then too.

Sold?

20121130-140410.jpg

Tagged , , , , ,

The Lesser Of Two Evils🔥

It is that time again, welcome to Cycle Five! Steroids. Yes. Chemotherapy. Yes. Velcade. Double yes.

I dread the week ahead. Correction, the next nine days. I feel slightly guilty for having these thoughts, because I willed for me to go onto a fifth round of PADIMAC. I willed for me to go into the clinic for four days for at least five hours per day, knowing that the treatment will make me feel rotten for the five days following. I know that staying on the trial is the best thing for me, but that does not take away the fact that my treatment is unpleasant. Ever the pragmatist, I am prepared for it. The clean pyjamas are out, the easy to heat meals are in, easy to watch entertainment is on my television and the activities to keep me relatively entertained at the clinic are in my bag.

Even with activities like reading about information management, I am likely to get bored. Two of my three main clinic buddies are still on a working holiday (selfish), and my other clinic buddy actually has a nine-to-five and has previously been taking time off, so boredom is well and truly is on the cards. I am not sure why the rest of my friends have to work; this world is too cruel. I have probably planned too many activities, as well as my scintillating read, I plan to do some writing (never did I think I would be the sort of person to slip that into a conversation), catch up with my chemospondence and chat utter nonsense to the Medically Trained People. I am sure they appreciate it. If only I had my energy in the evening and not the day when I am stuck in the clinic alone.

As I know what is ahead, I made sure that I thoroughly enjoyed my week off. I especially enjoyed my weekend, once I knew that I did not have to wallow in treatment anxiety and pity. I baked, I cooked, I had quality time with my AQ, people farted in front of me and I laughed. I even gave myself a break from the blog, in an attempt to not think about My Myeloma. For most the time it worked. Inevitably though, it creeps in… I enjoy myself with my friends and get into my bed thinking about how I much enjoyed myself and my brain goes “don’t forget you have cancer, your enjoyment is a sham”, or something along those lines and I am back right back down to reality. I will not need to be reminded of this fact this week, but that’s okay because my brain is not going to work properly anyway.

So, let this week commence… Give it to me PADIMAC.

Think paraprotein reduction please.

EJB x

Oh, before I forget, guess who gets to have a pregnancy test today? I just knew it was wrong for me to have all that unprotected sex with randoms last week… Oh well. You live and learn.

Tagged , , ,

Nineteen

At 11:25hrs this morning, I received a call from the hospital informing me that my paraprotein had reduced by four, below the halfway mark to 19. Nineteen.

Thank all the swear words for that.

I now get to have a Christmas at home with my family and I get to keep what is left of my hair for a little bit longer. Knowing that at some point in the new year, I will undergo a high dose of chemotherapy (aka The Diet), I have decided to indulge this Christmas. Cream can now be yogurt to me.

I could write reams and reams about how relieved and happy I am about the news I received this morning, but I have decided to get up and enjoy my day instead. I have chutney and scones to make.

Many thanks for all the messages this morning. I think my body heard what it had to do.

EJB x

In case you thought this was all over, I should probably warn you that I get to go through all of this again in three weeks time, just without the possibility of spending my Christmas in a hospital bed with T13’s Angels. That will be 2013’s challenge.

Tagged , , , , , ,

A Crossroads?

Have I come to the end of the road called PADIMAC? I do not know. My doctors do not know. Perhaps PADIMAC has been my A road leading to a motorway. Maybe I am just at a roundabout. Going round and round and straight on a bit and the round again. The last three weeks have felt a little bit like driving through Milton Keynes. Yes, I know I have exhausted this particular metaphor. I will stop now. I promise.

Today, as expected, one of my doctors talked me through the other treatment options should my paraprotein not reduce below 20 on Friday. The blood that will tell my doctors the answer was removed from my arm at 10:30hrs this morning. Who knew that a few millilitres of red and white blood cells and a bit of plasma could influence so much? Not me, that is for sure.

I was relatively relaxed prior to my appointment. I expected to be told that I would be put on a different course of treatment similar to the one I am on now. On reflection, I may have been told this.

Earlier today, I had a slight whine about how much of my time is spent waiting. Perhaps my whinge was slightly unfair, but, that said, I now have to wait two days to see whether I will start my fifth PADIMAC cycle on Monday. I knew this much already. I need to drop four points or whatever the measurement they use is called. This is Treatment Option 1. If this is not the case, I will have to wait a little bit longer…

If my paraprotein level is above 20 on Friday, which would mean that I have dropped less than three points in my fourth cycle, I will need to have another bone marrow biopsy. Two weeks after that, once the results are in, the Medically Trained People will decide how I am going to proceed. This is called limbo.

If my bone marrow juice and bone tells the Medically Trained People that I have had a good response, I will go into hospital for an intense dose of chemotherapy followed by stem cell support. This is Treatment Option 2. Treatment Option 2 will steal my Christmas.

If I have not had a good response, there are two further treatment options. Treatment Option 3 also steals Christmas and is another high dose of chemotherapy in hospital. Treatment Option 4, is what I thought I was going to be told today, and involves a drug taken orally in my flat on a four week cycle.

This is all I know. I do not know how long Treatment Options 2-4 will take, nor do I know what they involve and their vital statistics. I have many questions; the list grows every time I talk to somebody. I must try not to over think this, all I will get is dead ends (whoops, the metaphor came back). I cannot influence this.

My doctor rather helpfully drew a diagram, the sort one would find in ‘More’ magazine, for clarity. I can confirm that it is clear.

20121121-224946.jpg

I am frightened. The devil you know is better than the devil you don’t. Fact.

Think 19.

EJB x

🎄👻😭It will only be one Christmas, it’ll only be one Chistmas, it’ll only be one Christmas.🎄👻😭

Tagged , , , , ,

Cillit Bang

WARNING! The following contains an image of a stretch marked stomach, close your eyes if squeamish and/or eating. I brazenly display my battle scars from a lifetime of overeating in the clinic, so why should the Internet be any different? Vanity does mean I need to emphasise that the stretch marks are plentiful because of my figure pre-weightloss. Really.

Velcade then, is a medicine. It is my trial drug and, it would be fair to say that our union is bittersweet. Our relationship may be over, I don’t know. I will find out in a week whether Mr Velcade and I are going to carry on together, on this rocky road to recovery.

I have not responded as well to the Velcade and other drugs mix as I would have liked. The decision as to whether I continue with the current course will be based on my results on Friday. I am indifferent. New drug or old drug, I just want to get better.

In medical terms, the Velcade is similar to Cillit Bang. It’s a really expensive bleach that somehow gets rid of the myeloma and its stupid paraprotein by science. Clearly, I have a medical degree. The cost of the teeny tiny injection is £1.5k-£2k per shot (two separate sources although one was Internet based); I have had 16. Pocket money.

I suspect that it must be successful usually, because the side effects are the pits. Every time I visit the clinic, I am asked whether I am experiencing any of the following:

• numbness or pins and needles
• dizziness
• fatigue
• diarrhoea/constipation
• sickness/nausea
• irritable skin

I have experienced all of the above bar the diarrhoea and actual vomiting. There is the silver lining.

The neuropathy is the main thing and hopefully, because of the endless stream of questions and monitoring, my long lasting side effects will not be too severe. I now have the pleasure of waking up everyday with cramp in my leg. I get the occasional pin or needle, and sitting still for a long period is a treat when my left limbs go numb. If I was a fidgeter before, you should see me now. If I hold my phone for too long, my arm goes dead. That is the way treatment goes and I hope everyday that this is not permanent. I cannot complain too much because I have heard stories of people with more severe neuropathy than mine, so, consequentially, I hope everyday that mine does not get worse. I want to be able to continue to do up my buttons.

As for the rest?

Dizziness happens and I have to remember to stay hydrated. I have to have my blood pressure taken seated and standing, two times a cycle. It’s something about the oxygen.

Regulars will know where I stand on fatigue and constipation. They’re the bomb.

Skin irritation sounds relatively minor and it is, but boy is it a nuisance especially when it is on your waistband. I have the Velcade injected in my stomach after I once had it injected in my arm and I saw the mark it left. I really am vain. Every injection (for me anyway) leaves a red blotch, which then turns brown before it drys out turning grey. Fourteen of my injections have been in my stomach because of the unsightly markings and it made sense because my stomach is unsightly anyway as the picture below demonstrates. If you look really carefully, you will see Velcade marks at various stages. You could date them like a fossil.

20121119-154507.jpg

It is quite clear from the photograph that my mirror needs a good clean. I have never mastered the art of cleaning glass.

So there you have it. Is my relationship doomed? We’ll know in a week.

EJB x

Tagged , , , ,

Knowing The Cycle

I am wiped out. As in, actually wiped out. For the last four days, I have been into the clinic everyday, for a minimum of four and a half hours each trip, and I have received four doses of chemotherapy and two reduced doses of velcade. And thus, as my body now battles four days worth of rather strong chemicals, and I guess My Myeloma, I am absolutely pooped.

Current symptoms include the following:

• fatigue – I fell asleep on my way home in the ambulance
• lack of concentration
• nausea
• stomach cramps
• slight neuropathy in my left limbs – aka the pins and needles and more cramp
• hot flushes
• a constant taste of metal in my mouth – Tin Mouth, Tin Mouth! The un-kissable dream
• headache
• neck stiffness
• constipation

Don’t feel sorry for me though, oh no.

What differs from this cycle from my previous three cycles, specifically the last one when my symptoms worsened, is that I know there is an end date to this misery. I am not entirely sure whether I will be fortunate enough for this to pass by Saturday morning but if it doesn’t, I know it will pass at some point over the weekend or early next week. Hell, it may even pass tomorrow. Who knows? Must stay hydrated.

I have no control over this feeling, but I do have control in how I manage it mentally. So, what you are actually reading is a happy blog, you just need to read between the lines.

My key message to you and myself is that this will pass. Although I am pretty much bed bound right now, I know it will pass at some point. These current feelings and sensations are just another chapter in my future best seller ‘A Means To An End: Marry Me, I Am Bald, I Had Cancer, But I Think You Are Fly’.

In the long run, feeling this shit, is making me better. One day, some clever person will invent drugs that do not have side effects, but in the meantime, I am a brave enough Very Pleasant Young Lady who is just going to lie in bed by herself and ride out this rather nasty wave.

As I am not one to shy away from the hideous side of my treatment, please feel free to view this photograph of me looking tired. I am sure Housemate saw worse when he got home this evening.

20121108-202155.jpg

Sleep tight now.

EJBx

Tagged , , , , , ,

Twenty Three

Today is Results Day.

Paraprotein

To say I was nervous was an understatement. When I woke up this morning, I felt like I was getting up to get my GCSE results, and between you and me, I was disappointed with those. In preparation for today, I had somebody come with me to the clinic, just in case. In preparation, WM had bought me a multipack of Skips, just in case.

The actual result was an anticlimactic. My paraprotein is 23, down from 28 at the start of my last cycle, down from 40 since I started my treatment. In my head, this is neither bad nor good. I am pleased it has gone down, but I would have liked to have it fall below 20, just so I could say I have had a 50% reduction. At least it is working. A reduction is still a reduction and although this may be my last cycle, I could also have a further two cycles. If that is the case, I am only at the halfway mark. PADIMAC may have three more cycles to get its bum in gear. On the bright side, I now know I have the strength to take on all this cycle has to offer. Bring it on. I have food in my freezer.

Bloods

I don’t just get pricked for my paraprotein level. Oh no. Every three weeks, I have at least five blood tests, including five full blood counts and many other things. I am fortunate to have a Dad to explain these things to me, but I feel it is important to show you the gobbledegook. I tend to just look at the ‘L’ and ‘H’ in the far column. What the FBC says this time round is that my immune system is low, but I am not neutropenic. I am going back on the super foods.

20121105-200343.jpg

20121105-200358.jpg

Pregnancy

This morning, with breath that was baited, I waited nervously to hear the word “negative”. Phew.

So there it is. And now I start again.

EJBx

Tagged , , , , ,
%d bloggers like this: