On Monday this week I had my first dose of Cetuximab in Palmerston North. My oncologist had told me that it probably wouldn't make me feel sick, although I was still quite apprehensive after reading up on the huge list of potential side effects. The good news (much to my relief) is that the drug went in, and I felt fine! And the next day was no different. After going through 21 rounds of chemo it was very odd to watch a bag of IV medication go in, and not feel even the slightest bit queasy. Phew!
As this is a weekly treatment, dose two will follow quickly behind dose one, however knowing that I am not going to be out of action for several days following each dose is quite comforting. The worst side effect I can expect now is an all-over acne-like rash and of course, only time will tell.
Unfortunately this drug comes with a huge price tag as it is not currently government funded. When we realised just how huge the bill was going to be (and so quickly on the back of paying for SIRT), we somewhat reluctantly took our friend Mikaela up on her offer of setting up a givealittle page for us. Part of the reason for our reluctance is that this drug will not change the outcome for me, it will only prolong things for a bit (if it works at all).
The site (http://givealittle.co.nz/cause/moretimeformelissa) went live just one week ago and the response has been completely overwhelming. As of today, a little over $23,000 has been raised by 215 donors. The generosity of family, friends, friends of friends and even strangers has meant that the first 2-3 months of treatment will be taken care of. When the page was set up we set a target of $20,000 thinking it was going to be unachievable. We have been completely blown away by the response and words don't seem enough to express our gratitude. At this stage it is unclear how long I am going to be on the drug however knowing the first couple of months is covered is a huge weight off our minds.
The plan now is to continue the weekly doses for about a month with close monitoring of my blood markers (and any symptoms) and hope to see things stabilise a bit. If they do, we continue for as long as things remain stable.
I will keep you posted.......
Wednesday, 28 January 2015
Monday, 12 January 2015
SIRT part 2
As you may have gathered, the six week follow up from my SIRT treatment was some time ago and once again we have had a series of ups and downs which I can only now bring myself to share.
At the six week post-SIRT mark we got very good news indeed. The SIRT was successful in that it shrunk my tumours and sent my CEA plummeting from 176 to 30. We were very pleased with this result as it is apparently uncommon for SIRT to actually shrink tumours, it is more likely to change the cell density and hold the disease stable for an average of 5 months. So at this point we took the good news, celebrated a little and held our breaths for what we hoped would be at least 5 or 6 months of stable disease.
However this was very short lived, as just four weeks later my CEA was back up to 53 indicating tumour growth once more. So even though the average is 5 months of stable disease, it looks like I got about 2 months (I guess that's the bugger about averages), and most of that was recovering from the SIRT which was a challenge in itself.
We got the news of the rising CEA just days before our daughter turned 5 and started school. It was a bitter sweet time as I had been told in November 2012 that I had about 2 years to live so may not have been around to see my daughter start school. Her first day was a huge milestone for all of us, and I was grateful that I could be there to share it with her and be at least outwardly "healthy."
We took a two week holiday over Christmas and went down South to catch up with family and friends and enjoyed some Central Otago wine, good food and sunshine. Upon our return I went for another CT and had more bloods taken and this confirmed what we dreaded but expected, and that is that the tumours are once again growing, and my CEA was back up to 140.
Time to take my last treatment option for a spin.
The current plan is to start on Cetuximab (a non-funded targeted drug therapy) on the 26th Jan. It is a weekly treatment and will mean a weekly trip to Palmerston North to have it. We should know within 3 or 4 weeks whether or not it is working, but once again, it is not expected to shrink the tumours, just to hold them steady, once again for an average of 4-5 months.
I will keep you posted......
At the six week post-SIRT mark we got very good news indeed. The SIRT was successful in that it shrunk my tumours and sent my CEA plummeting from 176 to 30. We were very pleased with this result as it is apparently uncommon for SIRT to actually shrink tumours, it is more likely to change the cell density and hold the disease stable for an average of 5 months. So at this point we took the good news, celebrated a little and held our breaths for what we hoped would be at least 5 or 6 months of stable disease.
However this was very short lived, as just four weeks later my CEA was back up to 53 indicating tumour growth once more. So even though the average is 5 months of stable disease, it looks like I got about 2 months (I guess that's the bugger about averages), and most of that was recovering from the SIRT which was a challenge in itself.
We got the news of the rising CEA just days before our daughter turned 5 and started school. It was a bitter sweet time as I had been told in November 2012 that I had about 2 years to live so may not have been around to see my daughter start school. Her first day was a huge milestone for all of us, and I was grateful that I could be there to share it with her and be at least outwardly "healthy."
We took a two week holiday over Christmas and went down South to catch up with family and friends and enjoyed some Central Otago wine, good food and sunshine. Upon our return I went for another CT and had more bloods taken and this confirmed what we dreaded but expected, and that is that the tumours are once again growing, and my CEA was back up to 140.
Time to take my last treatment option for a spin.
The current plan is to start on Cetuximab (a non-funded targeted drug therapy) on the 26th Jan. It is a weekly treatment and will mean a weekly trip to Palmerston North to have it. We should know within 3 or 4 weeks whether or not it is working, but once again, it is not expected to shrink the tumours, just to hold them steady, once again for an average of 4-5 months.
I will keep you posted......
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