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.

Another week, another admission

Posted on January 29th, 2011 by Cam.
Categories: Let's talk.

Over the last couple of days, I have been feeling increasingly run down and in pain. I hadn’t slept for a few nights as the pain from the lesions has been too much. It is not just the pain, but the disconcerting feeling of bone being eaten while I sleep – that thought tends to keep me awake also.

After waiting a couple of days for things to improve, I decided it was time to once again head to ED. Again, I was blown away by everyone’s care for me when I came in. I had called ahead to Haematology to get advice from Dr Brad who told me to come straight in. When I got to ED, they were expecting me, had my name on a bed, and on a ‘crazy busy’ day in ED, I was in a resus room within minutes being checked over.

It was only a short time before I was on the ward, and thankfully, in my own room where I was able to get settled straight away. It is incredibly quiet here on the ward which has been great as I have been craving sleep for days.

Pain management is the main thing at this point. It has put my mind at ease quite a bit not having to think too much about what is going on in my body physically, and I can lay down and sit up without being too uncomfortable. I have stopped underestimating my description of the pain to the nurses so that we just go straight to maximum pain meds, including oxycontin, oxycodone, pregablin, endone, paracetamol and a shot of morphine every two hours. Still, the pain creeps back once these wear off and it is only after each shot of morphine that I feel normal.

I am here in hospital until Tuesday at least. They are fast-tracking the tests as much as possible so that I can qualify to get onto Velcade as early as Monday morning. This begins what is planned to be a year of chemo.

That is the objective account of what is happening. My mind feels overwhelmed with the implications of the current situation but after a weekend of rest I hope I can begin to process things a bit better.

I am so thankful for people’s prayers and support at this time. It has meant so much to me, and has been a huge comfort at a time of huge discomfort. I don’t feel abandoned by God at all, although I am struggling to deal with the reality that all this is happening again and I feel like I have very little reserve of strength left for this stage. If it were not for such amazing family, friends and fiancées I would be lost I am sure. Ash’s mum Pam arrived a couple of days ago for a few weeks over the wedding. It has worked out great that she can be here for Ash during this time. Ash has been such an amazing support – she has just arrived with Pam, better go :)

10 comments.

The trials

Posted on January 26th, 2011 by Cam.
Categories: Let's talk.

Yesterday Ash and I went to the hospital to find out what they have planned. Dr Dijan, who is Dr Brad’s number 2, spent a great amount of time with us as he explained what will be happening from now.
The PET scan results we saw yesterday indicated that the myeloma is back in my legs, collarbone, as well as the along the spine, ribs and sternum. It has spread too much to just hit with radiotherapy.

From now, I will be trying to qualify for a hospital based trail where I can access the drug Velcade that kept me going for a good part of last year and the year before. It is too expensive for long term, but the hospital will be paying for me to stay on it for 6 months to a year. To qualify, the disease needs to be present in blood and urine, I have to have had 3 lines of treatment (check) as well as a host of other criteria. Considering the rate and spread of my disease at this time, it seems that I will qualify fairly easily. I was hoping to not qualify, as this trial at this point is the last line of treatment we have that we know I am responsive to.

I am glad that I possibly get a year or so, but the last time I was on this drug I remember having the realisation that this drug was not making me better, it was just keeping me alive to get to the hospital for the next treatment. Disheartening.

Now things have changed somewhat. Ash and I are still running around planning a wedding, we are getting the house ready for visitors for the wedding and dealing with the health stuff on top of that. If it was just ‘stuff’ to organise, it would be manageable. But it is the other ‘stuff’ in life that breaks our backs, our strength, our resilience and our joy. These are the trials that make the hospital based trials a walk in the park.

2 comments.

Getting worse, fast.

Posted on January 24th, 2011 by Cam.
Categories: Let's talk.

The pain on my left hand side has been getting significantly worse over the week. I spent a few days in hospital the week before last with some pain after a blast of radiotherapy, but the pain has not left – it has just got worse.
While we were in church last night, Ash was rubbing my back and we discovered that there is now a palpable tumour coming along my ribs at the back. It has compromised the nerves along the ribs and the loss of sensation on the left hand side of my chest and abdomen.

We are now quite concerned about the rapid progression, and that we know it is still close to the spine. I expect to be starting radiotherapy asap as we wait on a call this morning to find out when to come into the hospital.

On to better news, it looks as though after our Brisbane wedding venue didn’t work out due to floods, it seems we are able to get into a fabulous location here in Perth on Cottesloe Beach. Cottesloe has significance for us both, as we were engaged there, but also it was a place where Ash and her fam spent quite a bit of time with brother Mark when he was diagnosed with cancer. We find out today or tomorrow if we can lock it in.

0 comments.

Floods

Posted on January 14th, 2011 by Cam.
Categories: Let's talk.

The floods in Queensland have been devastating to say the least. Not only that, but it seems all over the world is experiencing natural disasters. It seems strange to me that I haven’t heard any connections between all the disasters made on the news to other worldwide disasters. It is like everyone is reporting on their own disasters and not acknowledging that the world is under global stress. Birth pangs?

We have had to cancel our wedding plans in Brisbane. Ash has been on the phone all morning cancelling bookings. It looks like we will be having a Perth wedding sometime in February. It is a shame that we may not be able to have as many family and friends from over east make it to the wedding. We will have to have a party over there when things settle down a bit after the cleanup. The clips below show where our wedding reception was going to take place. Appropriately named ‘Drift Restaurant’, part of it ended up floating down a river and crashing under a bridge and the other part completely underwater on the banks of the Brisbane River. Even as I write, the flooding continues to rise in some areas, so the enormity is still yet to be realised.

I have spent a couple of days in hospital, just being discharged yesterday afternoon. I had acute abdo pains all night a few nights ago, and after getting through the night with the pain, I ended up heading into Emergency at 5:30 in the morning. I had a dose of radiation the night before on my chest/abdo, but it was more of a digestive pain. It seems the combination of steroids, drugs, radiation and tumours caused enough pain to get me into have it checked out. As it turns out, again, it was a good thing that I ended up in hospital at this point.

When they checked out my PET scan results from last week, they were able to confirm that my tumours are not just on my spine. They are also on the left side of my ribs, right side of the ribs and back in my sternum. This was not the news we needed. It did mean, however, that our plans to go away and marry had to be changed in order to get treatment sooner rather than later. Even today, I am in enough pain to warrant being worried, not being able to move much without significant chest pain, even though I am on strong pain killers. The nerves on the left side of my chest have been crushed by tumours so I have lost a lot of the peripheral feeling in my skin on that side.

I will need to start radiation sooner rather than later, and it may mean I start the hospital trial sooner too. Not good. I mean, great that I am able to get the chemo, but being locked into a year of lethargy and discomfort does not get me that excited.

0 comments.

And in other news…

Posted on January 12th, 2011 by Cam.
Categories: Let's talk.

For those who are not aware of the situation here in Australia, a lot of our eastern areas have been hit very severely with unprecedented flooding, destroying vast regional and metro areas and claiming lives.

Our thoughts are with everyone who is going through this tragic time in these affected areas.

Ash and I are still planning at this stage to be married in Brisbane (which is one of the badly affected cities) on the 22nd of January (yes, end of next week). Already, our reception venue (which is located on the river) called ‘Drift’ has been flooded and is at risk of sinking or floating away.

We will be making decisions over the next few days as to what to do regarding the going ahead of our current plans considering all that locals need to be dealing with at the moment. Heartbreaking to see such devastation and tragedy.

1 comment.

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