It's hard to believe it has been 8 weeks since I last updated my blog. The main reason for this is that there hasn't been a heck of a lot to report, and that's kinda good news given my current situation.
A few weeks ago I had a rough patch and ended up spending a couple of days in bed. I was extremely tired, began getting tumour pain, had an achy back and was beginning to feel that this was just how it was going to be from now on. My Oncologist sent me for weekly bloods, put me on a week of steroids and ordered another CT scan. After about a day on the steroids I began to feel much better and the tiredness eased a bit. My appetite had been pretty minimal and this picked up again. The next week was much better and I felt a huge sense of relief that things weren't so bad after all.
Since then things have been ok on the whole. More often than not I struggle with tiredness in the afternoons and evenings, and have a few niggles here and there but don't have too much to complain about.
I had the CT scan a couple of weeks ago and that showed that my three liver tumours have been growing slowly (perhaps even slower than expected) but there hasn't been any further spread. All good.
I am finding the concept of "no further treatment" an odd one to live with, at least mentally. Knowing that something is growing inside you that is going to kill you but doing nothing about it other than treating the symptoms feels very strange. I seem to flick between total acceptance (my usual state) into wee bursts of "argh surely there is something that can be done!?!" but these moments are fortunately short lived. I understand science enough to know that this is it, and acceptance is a much healthier and tolerable mental state than running around trying to solve an unsolvable problem. I trust my team of health professionals and trust that if there was anything that could be done, it would be.
Back to making the most of the good days and enjoying my kids, husband, friends and family for as long as I possibly can.
Wednesday, 17 June 2015
Monday, 27 April 2015
No further treatment
After the news that the Cetuximab had stopped working and following our week away, I had my 15th CT scan in 2.5 years and some more bloods. The CT results were good, in that the tumours have clearly shrunk since my CT in January and there has been no further spread. This means the Cetuximab definitely worked and I am in better shape now than I was 3.5 months ago.
That said, we discussed the remaining options with my Oncologist who said there was very little to be gained from trying Avastin with Irinotecan, as there is only a 5-10% chance it would work at all and if it did work then we would probably only see a drop in CEA for a
few weeks before it started rising again. There is also an increasing amount of evidence suggesting that once you start on Avastin it is not a good idea to stop (even if it doesn't seem to be working). Add to that the damage chemo does to your insides (especially when you have had as much as I have), the side effects plus all those extra hospital appointments and this option did not seem like a viable one to me. This means the only option left is "no further treatment."
So what can we expect now? It is not easy to predict as my cancer has not behaved typically this far, but it is most likely that I will trundle along for a
period of time and then new symptoms will start popping up. As they pop up they
will be investigated and treated accordingly.
My bloods showed that my CEA is still heading upwards but it is no longer relevant for me to report on the number, or even know myself for that matter, since we have opted for no further treatment and we can expect things will continue to deteriorate.
The best we can hope for now is a few months of respite before new symptoms start appearing. My life expectancy is now in the order of 6-9 months. The time has come to ride this thing out.
Will keep you posted......
Wednesday, 8 April 2015
The plateau that wasn't
Oh how quickly things can change. After my last blog update where I reported that my CEA was still trending nicely downwards, I had two further decreases (52.5 after 7 doses and 51.9 after 8 doses), but given how small the decreases were we decided we were probably seeing the start of a plateau.
At this stage I was feeling quite anxious as I had never experienced a plateau - in the past my CEA would either be going down (while on treatment) or up (when not on treatment). The key difference this time was that I was still going to be on treatment so I was hopeful that I might have a few more weeks (or months) of stability. I decided that if things remained stable (a little bit up and down would be ok) for say, another 3 or 4 weeks, then I might be able to trust it more. Deep down, however, I was expecting it to shoot straight back up.
A week later I experienced my first increase since being on Cetuximab (53.7) and a week after that it had jumped to 78.3. Bugger. No plateau. No point continuing with Cetuximab. My anxiety was justified.
So the question on everyone's lips is "what's next?" From what I understand there are only two options. I can try another expensive drug (Avastin) in combination with a chemo drug that I have had before (Irinotecan), accepting that the odds of it working are only in the order of 10% and dealing with a new range of side effects (and revisiting some old ones such as hair loss and neutropenia), or I can decide enough is enough and try to enjoy the time I have left without the endless hospital appointments and side effects. At this stage I am undecided.
Next week we are having a family trip down South for the second week of the school holidays and I am very much looking forward to catching up with friends and family and hopefully having some time out from the big decisions. Upon our return I will have a CT scan and a few more discussions with my Oncologists and go from there.
Until next time.......
At this stage I was feeling quite anxious as I had never experienced a plateau - in the past my CEA would either be going down (while on treatment) or up (when not on treatment). The key difference this time was that I was still going to be on treatment so I was hopeful that I might have a few more weeks (or months) of stability. I decided that if things remained stable (a little bit up and down would be ok) for say, another 3 or 4 weeks, then I might be able to trust it more. Deep down, however, I was expecting it to shoot straight back up.
A week later I experienced my first increase since being on Cetuximab (53.7) and a week after that it had jumped to 78.3. Bugger. No plateau. No point continuing with Cetuximab. My anxiety was justified.
So the question on everyone's lips is "what's next?" From what I understand there are only two options. I can try another expensive drug (Avastin) in combination with a chemo drug that I have had before (Irinotecan), accepting that the odds of it working are only in the order of 10% and dealing with a new range of side effects (and revisiting some old ones such as hair loss and neutropenia), or I can decide enough is enough and try to enjoy the time I have left without the endless hospital appointments and side effects. At this stage I am undecided.
Next week we are having a family trip down South for the second week of the school holidays and I am very much looking forward to catching up with friends and family and hopefully having some time out from the big decisions. Upon our return I will have a CT scan and a few more discussions with my Oncologists and go from there.
Until next time.......
Tuesday, 10 March 2015
The good news keeps coming
I have now had 7 doses of Cetuximab and much to my relief
and delight, my CEA is continuing to drop. After the first dose it had dropped from
265 to 211, then to 132, then 97, then 82 after 4 doses, and as of Monday this week (a week after my 6th dose) my
CEA was just 56.5.
The plan is to keep going with the weekly doses of Cetuximab until my CEA plateaus and then do
a CT scan to see how things are looking. The CT results would then be used as a
baseline for monitoring how long things remain stable after that (and we would still continue on weekly doses until the tumours started growing again).
The other good news is that the only side effects I seem to
be experiencing are related to my skin. I seem to be on top of the acne-like
rash now and am experiencing extremely dry skin on my face and neck, however
this is also largely manageable and a small price to pay for the excellent
results we are seeing.
I continue to be relieved that Cetuximab does not make me feel unwell, infact I have been feeling so good lately that I have joined the gym and have been doing BodyBalance (a mix of yoga/pilates/tai chi) twice a week and a gentle cardio workout once a week. Who would have thought? Long may it continue......
Tuesday, 10 February 2015
Cetuximab 2 and 3 (and some good news!)
Well, the first news following my last update is that yes, I got the acne-like rash :( However my doctor thought this was probably a good sign as it is often a sign that the drug is working. The other good news is that so far it seems to be limited to my face (bad enough I know) but good that it isn't also all over my chest and back. I have spent most of the last two weeks feeling like it zitty teenager, and reading up about it as much as I can to try and improve it. In the last two days I have noticed significant improvement, so fingers crossed I have seen the worst of it.....but who knows.
And the big news of the week is that my bloods are strongly indicating that the drug is not only working to stabilise the disease, but may also be shrinking my tumours! For those who have been following the rise and fall of my CEA levels (for those new to this, CEA is a marker in the blood that can indicate tumour growth and shrinkage in people with bowel cancer. Most people without bowel cancer have this in the range of 0-3 however if you do have bowel cancer its not the number that matters so much as whether your number is going up or down) my CEA hit the highest levels I have seen (265) on the day I started on Cetuximab, and this fell to 211 a week after my first dose and to 132 a week after the second dose. So it looks like the drug is not only holding things steady but possibly shrinking the tumours. My Oncologist said he has never seen these kinds of results (ie an indication of such dramatic tumour shrinkage) on this drug so its all a bit exciting, and long may it continue.
Of course, blood markers are just one way of getting an idea what is happening and we would get a more definitive answer by doing a CT scan, however at this stage it probably wouldn't change my treatment plan so not worth the hassle and expense. So the current plan is to keep going with the Cetuximab and continue to closely monitor my bloods and symptoms and when things do start to plateau, we would do a CT scan at that stage to confirm where things are at.
Anyway, at this stage this is the best news we could have possibly got. I had my third dose yesterday and hope to see a continuation in the downward trend in my CEA next week.
As always, I will keep you posted!
And the big news of the week is that my bloods are strongly indicating that the drug is not only working to stabilise the disease, but may also be shrinking my tumours! For those who have been following the rise and fall of my CEA levels (for those new to this, CEA is a marker in the blood that can indicate tumour growth and shrinkage in people with bowel cancer. Most people without bowel cancer have this in the range of 0-3 however if you do have bowel cancer its not the number that matters so much as whether your number is going up or down) my CEA hit the highest levels I have seen (265) on the day I started on Cetuximab, and this fell to 211 a week after my first dose and to 132 a week after the second dose. So it looks like the drug is not only holding things steady but possibly shrinking the tumours. My Oncologist said he has never seen these kinds of results (ie an indication of such dramatic tumour shrinkage) on this drug so its all a bit exciting, and long may it continue.
Of course, blood markers are just one way of getting an idea what is happening and we would get a more definitive answer by doing a CT scan, however at this stage it probably wouldn't change my treatment plan so not worth the hassle and expense. So the current plan is to keep going with the Cetuximab and continue to closely monitor my bloods and symptoms and when things do start to plateau, we would do a CT scan at that stage to confirm where things are at.
Anyway, at this stage this is the best news we could have possibly got. I had my third dose yesterday and hope to see a continuation in the downward trend in my CEA next week.
As always, I will keep you posted!
Wednesday, 28 January 2015
Cetuximab 1
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.......
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.......
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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