Well it's official, the Brentuximab is toast! Someone left it unrefrigerated from Saturday morning till Tuesday last week. I hope someone gets an arse kicking! It will be a couple of weeks before I see the replacement. I'm just glad that someone picked it up and didn't try to hide it!! Grrr So frustrated..
I just want to start feeling well again, I've been coughing a bit more lately, it's like coughing up rubber glue and also the itch is in overdrive. So not very happy.
Mentally I'd set myself up for treatment by late Jan, it's now the middle of Feb and it if the drug isn't here by the middle of next week it will be around March 6-10th before I can get it administered by Richard Isaacs as he is away on holiday from the 25th of Jan.
Tuesday, February 14, 2012
Sunday, February 12, 2012
Treatment delayed. Grrrr!!!!
You just would not believe it! I was scheduled to start Brentuximab tomorrow afternoon Monday 13th Feb.
As fate would have it I received a phone call from Dr Isaacs on Friday to say that we would have to hold off treatment as the drug may have been compromised in transit.
Apparently somewhere along the line the consignment worth $66,000 has not been kept in a temperature controlled environment. It is recommended that it be stored at between 2-8C. This was not followed and now the pharmacy is desperately trying to find out from the manufacturer if the drug would have been damaged as a result.
Personally I don't want to find out that it's lost it's efficacy by way of failing to respond to treatment!
I've passed my concerns on to those that need to know and personally I think it should be binned and a new order placed immediately. Whether that happens or not depends on what the drug company has to say.
I'm sure they will want to sell another 4 cycles, so I'm expecting them to say throw it out too.
This in no way affects Sarah and I financially as it is the hospital that made the purchase and they would then invoice us once dispensed. At this point in time it looks like the shipping company and the hospital will have to fight it out and ultimately someones insurance will be footing the bill. Certainly not us.
Meantime I'm doing OK. I'm super itchy and my asthma is worse, both as a result of the lower prednisone dose I'd say.
I'll update once I know more. ..Ron
As fate would have it I received a phone call from Dr Isaacs on Friday to say that we would have to hold off treatment as the drug may have been compromised in transit.
Apparently somewhere along the line the consignment worth $66,000 has not been kept in a temperature controlled environment. It is recommended that it be stored at between 2-8C. This was not followed and now the pharmacy is desperately trying to find out from the manufacturer if the drug would have been damaged as a result.
Personally I don't want to find out that it's lost it's efficacy by way of failing to respond to treatment!
I've passed my concerns on to those that need to know and personally I think it should be binned and a new order placed immediately. Whether that happens or not depends on what the drug company has to say.
I'm sure they will want to sell another 4 cycles, so I'm expecting them to say throw it out too.
This in no way affects Sarah and I financially as it is the hospital that made the purchase and they would then invoice us once dispensed. At this point in time it looks like the shipping company and the hospital will have to fight it out and ultimately someones insurance will be footing the bill. Certainly not us.
Meantime I'm doing OK. I'm super itchy and my asthma is worse, both as a result of the lower prednisone dose I'd say.
I'll update once I know more. ..Ron
Thursday, February 2, 2012
Wednesday, February 1, 2012
Adcetris / Brentuximab has arrived.
Finally the new drug has arrived in the country. Richard Isaacs my oncologist sent me a text this morning to say it had arrived and that he would like to start treatment on Feb 13th 2012.
The CT scan results came in a few days back too.. a couple of modestly enlarged (2.5 to 3cm) lymph nodes in both my abdomen and pelvis. Not a lot else to see. The radiologist had no idea what to make of my lungs, the left lung being a total mess. I said to Dr Isaacs that my lungs were a bit of an enigma, no one's really sure what was going on there... lymphoma or BOOP or fibrosis. My spleen is still slightly enlarged too.
He asked if I still wanted to continue with the Brentuximab in light of the CT scan. I think he was thinking of waiting until I was in worse shape.. what I call the parachute effect. But I was in a pretty bad state a couple of months ago and the idea of the Vinorelbine was to get me to this stage so I'd be in better shape for the new treatment. I said I wanted continue and that my low blood counts showed that I still had some degree of marrow involvement that needed to be considered.
So here I am, in pretty good shape and hopefully going to get a whole lot better.
It's not like there's a huge cancer burden to get rid of.. just a spring clean! (well that's my theory!)
Hey here's a laugh.. further to yesterday's drama where I fitted larger brakes to my car only to find the wheels no longer fitted..
I purchased later model STi wheels today from the guy on Trademe, they fitted perfectly and he only wanted $150 for the whole set, an absolute bargain. I dropped both sets of wheels off at the tyre shop this morning to have the tyres swapped over expecting to pay about $90 for the job. Later in the day I got a phone call from the tyre shop saying they had a buyer for my old wheels for $200 and there was no charge on the fitting of my new ones!
Talk about falling down the toilet and coming up with gold teeth! ..or in this case.. Gold wheels! :)
.JPG)
Cheers! ..Ron
The CT scan results came in a few days back too.. a couple of modestly enlarged (2.5 to 3cm) lymph nodes in both my abdomen and pelvis. Not a lot else to see. The radiologist had no idea what to make of my lungs, the left lung being a total mess. I said to Dr Isaacs that my lungs were a bit of an enigma, no one's really sure what was going on there... lymphoma or BOOP or fibrosis. My spleen is still slightly enlarged too.
He asked if I still wanted to continue with the Brentuximab in light of the CT scan. I think he was thinking of waiting until I was in worse shape.. what I call the parachute effect. But I was in a pretty bad state a couple of months ago and the idea of the Vinorelbine was to get me to this stage so I'd be in better shape for the new treatment. I said I wanted continue and that my low blood counts showed that I still had some degree of marrow involvement that needed to be considered.
So here I am, in pretty good shape and hopefully going to get a whole lot better.
It's not like there's a huge cancer burden to get rid of.. just a spring clean! (well that's my theory!)
Hey here's a laugh.. further to yesterday's drama where I fitted larger brakes to my car only to find the wheels no longer fitted..
I purchased later model STi wheels today from the guy on Trademe, they fitted perfectly and he only wanted $150 for the whole set, an absolute bargain. I dropped both sets of wheels off at the tyre shop this morning to have the tyres swapped over expecting to pay about $90 for the job. Later in the day I got a phone call from the tyre shop saying they had a buyer for my old wheels for $200 and there was no charge on the fitting of my new ones!
Talk about falling down the toilet and coming up with gold teeth! ..or in this case.. Gold wheels! :)
.JPG)
Cheers! ..Ron
Tuesday, January 31, 2012
Drugs, Vision, Brakes and Privacy.
Not a word on when I will see the arrival of Brentuximab. All I can do is wait and hope that maybe it will arrive by the end of the week in time to be sent up to Auckland where it will be mixed and prepared and then sent back via Air courier to Palmerston North on the day it's administered. Apparently it has a 12 hour shelf life once mixed and it can only be prepared by a particular drug company in Auckland.
I had my eyes tested today and have ordered a new pair of glasses to get me through until I'm in a position to have cataract surgery at the end of the chemo, Probably in about six months.
The optometrist said my eyes were still in pretty good shape, no glaucoma and the optic nerve looked very good, so no diabetes damage either. It's nice to know I'm not going to go blind any time soon!
One thing he did say with regards to cataract surgery that was very exciting is that the lens they put back in would be tailored to suit my vision, so I'd actually have better vision than I did previously, no astigmatism for instance, which I've always had. He said if people knew just how good their sight was going to be after the surgery they wouldn't put it off for years like some often do. He said it's like having the sight of a teenager again, more vibrant colours and clarity.
I should have some new glasses by Friday, I'm getting new lenses fitted to a set of frames I bought about seven years ago but barely used. They are light weight Titanium and cost a me a small fortune, so I figure I'd better get some use out of them.
After a busy day yesterday working on a Celica GT4 suspension job, I thought I'd take it easy today and do some repairs on my Impreza STi road car. The brakes on it are terrible from the factory so after finding a set of later model up-rated brakes on Trademe at a very good price I decided to fit those today as well. All went well, everything bolted up perfectly and they looked great!..
That was until I went to fit the wheels back on!! They don't clear the larger brake calipers, so now I have a car with great brakes and no wheels! DOH!
As luck would have it there was a guy selling a set of factory STi Subaru alloy wheels on Trademe that fitted correctly with the new brakes. What was really scary, and is probably a sign of just how small this world is getting, is that when I entered his phone number into my phone to call him, his name came up automatically! Apparently we are Facebook friends due to our motorsport connections.
It's scary to think that Google that has all this info can link everyone that has ever entered anything into any of the many arms of the Internet that it controls. Everything from Facebook, Picasa, YouTube, Google's search engine or even this Blog. They know my details and they know the details of everyone I know and every connection as it fans out from there. The fact that they hide the information from us is supposed to make us believe we have privacy. Scary!!
I had my eyes tested today and have ordered a new pair of glasses to get me through until I'm in a position to have cataract surgery at the end of the chemo, Probably in about six months.
The optometrist said my eyes were still in pretty good shape, no glaucoma and the optic nerve looked very good, so no diabetes damage either. It's nice to know I'm not going to go blind any time soon!
One thing he did say with regards to cataract surgery that was very exciting is that the lens they put back in would be tailored to suit my vision, so I'd actually have better vision than I did previously, no astigmatism for instance, which I've always had. He said if people knew just how good their sight was going to be after the surgery they wouldn't put it off for years like some often do. He said it's like having the sight of a teenager again, more vibrant colours and clarity.
I should have some new glasses by Friday, I'm getting new lenses fitted to a set of frames I bought about seven years ago but barely used. They are light weight Titanium and cost a me a small fortune, so I figure I'd better get some use out of them.
After a busy day yesterday working on a Celica GT4 suspension job, I thought I'd take it easy today and do some repairs on my Impreza STi road car. The brakes on it are terrible from the factory so after finding a set of later model up-rated brakes on Trademe at a very good price I decided to fit those today as well. All went well, everything bolted up perfectly and they looked great!..
That was until I went to fit the wheels back on!! They don't clear the larger brake calipers, so now I have a car with great brakes and no wheels! DOH!
As luck would have it there was a guy selling a set of factory STi Subaru alloy wheels on Trademe that fitted correctly with the new brakes. What was really scary, and is probably a sign of just how small this world is getting, is that when I entered his phone number into my phone to call him, his name came up automatically! Apparently we are Facebook friends due to our motorsport connections.
It's scary to think that Google that has all this info can link everyone that has ever entered anything into any of the many arms of the Internet that it controls. Everything from Facebook, Picasa, YouTube, Google's search engine or even this Blog. They know my details and they know the details of everyone I know and every connection as it fans out from there. The fact that they hide the information from us is supposed to make us believe we have privacy. Scary!!
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