Trial results

Posted on February 28th, 2011 by Cam.
Categories: Let's talk.

The trial is working. Kappa light chains are down from 550+ to 27. Tumours have gone down significantly. Goal is to not get peripheral neuropathy so I can stay on the trial for the entire year. Goal is to not need the trial.

My mind is overwhelmed. So many things to consider. It is like there is too much happening and everything has had to grind to a halt for self-preservation. I don’t feel like I can make decisions at the moment.

The heat here in Perth too is just too much. Can’t venture out the door, unless there is a destination with an air-conditioner. Other than that, it is a case of keeping as cool as possible by having the occasional cool shower and laying by the fan. Regulating body temperature at the moment is difficult, as the chemo plays games with my body. They are not the games I enjoy.

I have been feeling a lot more nauseous on this round of chemo for some reason too. It could be the heat, or it could be that I am one of the 50% of participants who actually have the trial drug rather than the placebo.

I am struggling to keep the strength up to fight this thing to be honest. I haven’t been able to process this step of being on the trial. I am thankful to be on it, no doubt, as it has certainly worked so well already. But what next? I always saw this trial as the last step, and medically it is really – after that it is just hit or miss. So while my mind tries to get the strength to pursue healing, my body gets tired, the complexities of life get bigger and it ends up being a lot easier to let my body rest, rest, rest.

It is this rest though that seems too much like not living that crushes me. I want to be doing so many things, but my body and mind get cramped to the point of frustration. I dream of being healed, of a new life. There is so much that is needed to win this.

There is more to be expected from God on my healing I believe, but it is just so difficult to not get discouraged, distracted, disappointed. Where to from here?

4 comments.

End of Round One

Posted on February 13th, 2011 by Cam.
Categories: Let's talk.

I have just returned from the hospital where I received my last Velcade injection for this cycle. I now have the next week off, but from memory it is still a bit of a down week until I get about half way through. Just when you start to get your energy back, that is when the next cycle begins. It is going to be a year.

At this point, I feel all my ‘healing’ options are colliding at once. Miraculous healing from God, healing through diet, healing through medicine, healing through exercise, detox programs, therapy this, therapoo that… I am encountering the confusion that is not helped at all by being on significant quantities of painkillers and chemo brain.

I would like healing from God, full stop. Something definite. Something miraculous. Something. I guess I want that one because it is certain. I want the Author and Creator of this body to re-write and tweek. To command cells to do what is right. That is what I need. That is what I want.

Every time I go through a spell of tumours, my skeletal carcass is eaten away in some form or another. I believe that can be healed too, but in the case of my hip, I still wish that I didn’t have to cart around a prosthetic that is attached to me, but not me to it. But on that topic of hip, ever since I took that video of me sprinting at speed down the street demonstrating my lack of hip pain, I have not had any hip pain! That is really phenomenal. considering I have spent a year being tormented by the pain – to the point of planning a complete hip replacement in the hope that it may stop the pain.

I suppose it was an amazing miracle in itself that an injury like the hip caused one year’s worth of excruciating pain, then, just went overnight. I can’t really put it down to anything else but a slight change in medication. I happened to find a bottle of Slow K (potassium chloride) left over from my stem-cell transplant. They tasted like sugar coated almonds so I took some one night (it is the way some Harris family members have come to test medications:) and the pain was gone the next day. Please do not try this at home.

On the diet front, Ash has been phenomenal. She has researched specific juices to keep me healthy on the inside , as well as come across some interesting research on Curcumin which is an extract from the turmeric spice. It has been effective in the treatment of myeloma, to keep it in at least a ‘smouldering’ state.

We have also been really blessed to have great support from our Osteopathy friends that I have been seeing for a while for my range of ailments – mainly my hip and back. They have a really wholistic approach to healing, so when I went there to have my hip seen to, they were able to help out with other parts of my body. They’re names are Kel and Kath, and they have been so helpful to us in support and knowledge. Coffee enemas may also be on the menu down the track, so that could be a good time to get to know Kel a little more. We’ll have to be more specific in the future when either of us suggest for catching up over a coffee, just so I know whether to bring tubing or macaroons.

Although the chemo trial goes for a year, I expect that the peripheral neuropathy will set in earlier than that. I don’t feel this is a pessimistic viewpoint, just a more realistic one based on the way my body has responded in the past.

To clarify, if I haven’t explained this in the past, the chemical trial is run by the hospital over the year and Dr Brad is overseeing its application at Charles Gairdiner Hospital. It is an international trial using the drugs Velcade, Dexamethasone and Panibinostat. I have used the two drugs Velcade and Dexamethasone in tandem before with great results. The only downside is that the nerve damage set in, and that it cost too much for the government to continue paying for it.

Dr Brad got me onto the trial here at Charlies, which I am incredibly grateful for. I didn’t want to go on it, as it signifies the last line of treatment medically available that we are willing at this point to try. After this, medically it is hit or miss.

I want God in on this. I have never felt abandoned by Him, I stand by that. I do wish that more happened before hips went, hair went, etc. Seeing things that make me look sick, make me feel sick. I want to push the limits in my own life about how I believe in the power of prayer for healing by my Creator. I am encouraged incredibly by my church, the people there are beyond amazing, as are my other friends and fam. I almost feel ‘outprayed’ as others take my situation more dire than I do at times.

Ash has endured some of the more bizarre situations. She has had to organise a complete wedding in Brisbane, watch it wash down the river in a natural disaster, re-plan the wedding here in Perth, then drive her fiance to Emergency Department instead as pain got more intense by the day. To cancel that one too was heartbreaking. Add this onto moving state, away from family and friends, etc. She never ceases to amaze me and I am blown away by her compassion, empathy and incredible care for others even while all these other things going on. I feel so incredibly blessed by her. It is Ash’s birthday this coming Saturday. I know without doubt this world got a wonderful gift when Ash was born.

2 comments.

Life going on

Posted on February 10th, 2011 by Cam.
Categories: Let's talk.

Normal life resumes- I spent yesterday morning at the hospital getting a cannula for a blood test. The blood test will determine whether my bloods are ok enough to get the chemo in the afternoon. The chemo regime is pretty full on, and it looks like it will take up quite a bit of time over the next few months especially.

The drugs have taken a big toll on my body. I still cannot focus properly, and I have the twitch in my hands that ensures I find difficulty when typing, but these side effects may be pretty normal. It is hard to know what is normal anymore with so many drugs going through the system at this point.

Pretty tired now. Am meant to head to Fremantle today, but may have to rest up instead. Ash stars some work local work today, more for sanity than anything else. Looking forward to something other than health focus to be honest.

3 comments.

The wedding – the second one that was postponed.

Posted on February 5th, 2011 by Cam.
Categories: Let's talk.

Well, Ash and I are meant to be getting married today – this afternoon in fact. My apologies if you have not got the message yet! If it is any consolation, you are welcome to come by the hospital. I can offer chocolate, 110ml serves of orange juice (or apple) and vending machine hot chocolate. It could be a wild night still.

The cancellation of the wedding is the biggest letdown. Given the circumstances however, I know that it is the right decision. Purely from a health perspective, I am laying here in bed on a normal Saturday morning, struggling to focus on words on the screen, struggling with lethargy, struggling to grasp the overwhelming task ahead of getting through this chemo. Not looking forward to it.

I have been on a cocktail of painkillers since I have been in hospital, and they are messing with me I think. I have uncontrollable spasms in my hands that have resulted in dropping things, not being able to type or write etc. Not sure if that will go or not but it makes it hard to get things done.

Since I have been in hostpital, 5 new patients have come and gone, and I have been the second longest-laying patient. Great. The Highlight has been having Jemilla’s 1st birthday here yesterday and the family come up and have a party here at across the hospital hallway. I am really thankful for fam and friends who have been able to pop in and I look forward to seeing others after I get out.

I have had literally hundreds of cannula placements in my arms over the years to get drugs in, to get stuff out. I thought it was an easy procedure to place a cannula. I now have a new appreciation for those who have placed these tubes in my arms. Instead of enjoying matrimonial bliss today, I had a trainee doctor come to place my cannula. First shot was a miss, but it took about 10 minutes of fishing around before concluding that he had punctured and re-punctured the vein too many times to keep going. Except he did. The next 40 minutes were spent trying to get a cannula into a vein in my arm. Dr Think-I-Can-Do-It didn’t end up finding a vein, and my arm ended up with 4 dot-band-aid cemetery on it, paying tribute to the numerous vein casualties we had lost over the 40 minutes or so.

The defeated Dr organised another vein digger to tap the vein, as we were under a strict time limit. I had to get this dose of Velcade in before 2pm or we would be outside the parameters of the trial requirements. The vein had a cannula after only 2 tries on the other arm, so I have 6 punctures over my arm all up, but we got one in. Nurse Annika, who is one of my favourite nurses in the world, looked after me a few years ago when I had my stem-cell transplant. She came in and injected my life-saving Velcade. Done.

My mind is on the wedding that Ash and I were supposed to have today. We look forward to the day when the celebration will take place. Got to get through these health issues for now.

2 comments.

Super

Posted on February 3rd, 2011 by Cam.
Categories: Let's talk.

Setting: Bed ‘A’ in a hospital ward room. Bed ‘B’ man is snoring. Bed ‘C’ man is snoring and asphyxiating. Bed ‘D’ man is snoring, farting, asphyxiating and sleep-talking the word ‘Fantastic!’. Such are the joys of being in a shared hospital room. Still, I was so fortunate to get into a single room as I had for the last 5 days. I actually feel incredibly relaxed here at hospital, and know that it is the right place to be at this time.

A couple of days ago, the decision had to be made to postpone the wedding date… again.

This was a heartbreaking decision, and one that we have really battled with. Ash has planned both the weddings with phenomenal detail, creativity and class. The beautiful themes and ideas she has been able to develop have been just brilliant. It has been the most difficult set of decisions over the last few weeks and months.

I haven’t written in the last few days I have been in hospital as I have unable to write at all really apart from a few short letters. I haven’t been able to focus on any reading and writing due to the drugs making me very dizzy and they make me see at least two of everything. Even as I write this , my vision is very dizzy and my hands are jolting uncontrollably it seems. I am sure once the pain killers come down I will return to normal.

Over the last few days, we have been waiting anxiously for the results from my tests in order to qualify for what is called the Panorama Trial. In it, I am given two control drugs, Velcade and Dexamethasone, and a test drug called Panobinostat. I do not know if I get this drug or a placebo – it is a 50/50 chance. But I am on the trial for the control drugs, as they worked very well for me last time.

The hospital now pays for my drugs, and they will provide a year’s worth of the drug all up. If I take it for 6 months, and it makes a difference for me, then they will give it to me for another 6 months approximately. Very thankful for this. Dr Brad has done a lot for me in getting me onto the right trials and treatment. He has been amazing for me the whole time. Relentless.

A couple of days ago, I had to have the last of the tests which was a bone marrow aspirate. This is the one that they knock you out for a little while with Medaz. Usually it takes about 3 vials (15mg ofMedaz) to get me to the point where I am up for it while still carrying on a very intelligible conversation (so I believe). This time I was out cold after one injection. I think I was just so physically and emotionally exhausted after the previous week I could have been knocked out quite easily with a sip of mouthwash.

Everything went well. Yesterday, the results came through and I just qualified to have the trial. This was both the best news, and the worst. It was the best news because I could now receive the only drug that we know of now that can reduce the tumor activity and stop it from destroying bone. That is what I have been most worried about. I can’t do much by way of sleeping or relaxing knowing that the pain is associated with bone destruction. Call me old fashioned.
Last night, I got the news that I had qualified for the trial…just.

Nurse Louise will be my Trial Coordinator for the length of the trial. I think peripheral neuropathy will be a problem for me on this trial. It was the last time. It is when you get the sensation that your hands and feet are burning up. It is a terrible sensation, and quite destructive to your nerves. Nasty stuff.

Ash has been amazing. Looking after my every need and just being by my side whenever she can. She has been able to take in the parts of the conversations too that I miss being mostly drugged up and unable to concentrate on any detail. It has been great to have her mum Pam over at this time too. Just been perfect timing.

I took my first drugs last night. Before I did this however, I had to have a series of ECGs to monitor my heart rate and output capacity ratios. All tests went well and I officially started the trial with a shot of Velcade, Dexamethasone Tablets and Panobinistat or it’s placebo. I feel like it has made a difference already, in that the Dexies shrink the lesions and take the pain away. They also reduce the destruction caused by the tumors to the bone.

I am expecting the Velcade will begin to make me feel a little lethargic tomorrow as it kicks in. As long as it is doing its job.

So the wedding has been postponed, and that is the most difficult thing. Ash has put her everything into these upcoming events, and now we have to reschedule. We will wait until we know how things go for the trial before setting the new date. I really felt like I was crumbling under many pressures to be able to take on while in such a state, and I knew there would be an intense weekend of testing, being unwell, monitoring, more injections and more uncertainty. It was going to be a big call to make it to a celebratory marriage whilst feeling like I was having chemotherapy.

I am expected to be in this hospital until Monday. Will write more when drugs calm down.

4 comments.

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