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.......

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 6^th 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......

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!

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.......

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......

SIRT part 1

As I outlined in my last post, I decided to proceed with SIRT (Selective Internal Radiation Therapy) as my tumours appeared to be confined to my liver (making me a good candidate) and I am down to my last two treatment options.

The first step to having SIRT was to have a hepatic angiogram so the docs could check that the radioactive goo they planned to pump in was going to end up in the right spot and there wasn’t going to be any leakage into other organs. It involved having a series of catheters put through an incision in an artery in my groin, and threaded all the way up to my liver. Contrast was administered via the catheters as was a small amount of radioactive marker. Scans were then done to see where the contrast and markers went. I hardly felt a thing (thanks to the sedatives and IV pain relief) and the markers were taken up by my liver tumours which boded well for a good outcome from the SIRT treatment.

I went back three weeks later for the “live run” of the procedure, and even though the procedure was the same, I was not expecting the pain and nausea that came with it. About half way through the procedure I started to get really bad back pain, and this increased and persisted for about 12 hours (even with IV pain relief). It was exacerbated by the fact I was not allowed to move my right hip or leg for about 6 hours after the procedure in order for the arterial bleeding to stop. The pain moved from my back into my liver and the medical staff were unable to get on top of the pain. I couldn't hold food down for two days and was so whacked I pretty much slept (albeit it off and on) for the first 3 or 4 days. Once I had got my pain under control with regular pain meds things started to improve but it took about 3 weeks to come off the regular meds. I have continued to experience breakthrough pain off and on, which usually lasts for about 2 or 3 days before it settles down again. My energy levels are still not fantastic, but I have been enjoying the break from regular treatment and appointments.

I am still waiting on my 6 week follow up to see what impact the SIRT has had. Here’s hoping for a good outcome……….

When chemotherapy stops working

Almost two months ago when I last blogged I was two rounds through what was supposed to be 8 rounds of Xelox. However after just three rounds I had to call it quits. During my three rounds of Xelox my CEA steadily rose, indicating that there was likely to be tumour growth rather than shrinkage. I ended up being admitted to hospital with severe pain a few days after round 3 which turned out to be due to some of the growing liver mets pressing on other organs. During that hospital stay they did a CT scan which confirmed that the Xelox was not working and the tumours were growing despite the chemo. This basically means that there is nothing more the public health system can offer me as I have now exhausted all the publicly funded treatment options for bowel cancer.

I was referred to a private oncologist in Palmerston North (there aren't any in Wellington) and he outlined that there are three options left to consider, each with their own hefty price tags. They are:
1. SIRT (Selective Internal Radiation Therapy)
2. Cetuximab (a targeted therapy)
3. Avastin (a targeted therapy)

Apparently Avastin isn’t really an option for me as based on how I have responded to treatment so far, there would only be about a 10% chance it would do anything. So, that leaves us with numbers 1 (SIRT) and 2 (Cetuximab). My current thinking is that we will do both. The plan would be to have SIRT (soon), then wait and see if it does anything and be closely monitored until things start growing again. When they do, we would start on Cetuximab which is weekly in Palmerston North. It would only take an hour and it wouldn’t make me sick (hurray!). They usually give it in combination with some of the other chemo drugs I have had, however the doc I saw in Palmerston North said that I was clearly “chemo resistant” now given that a) my cancer continued to grow despite being on Xelox and b) I didn’t have a huge response to Folfiri and the cancer started growing back very soon after I stopped having it. Even though I am KRAS and NRAS wild-type, there is still only a 33% chance Cetuximab will work, but we would know after about 4 weeks of treatment whether or not it was worth carrying on. 

Since I saw the doc in Palmerston North its been pretty full on. I had bloods done yesterday, a CT scan this morning and then I met with the Radiologist who does SIRT this afternoon. Based on my CT and bloods he has agreed to do it but it’s not quite as straight forward as I was hoping. The first step is to have an Angiogram where he threads a tube in through my arterial vein in my groin all the way up to my liver and pumps in some contrast to check that I am suitable to have the procedure and there isn’t going to be any leakage into other organs. Then there is about a two week wait until the results of that are through and they order, and receive, the radioactive goo that they need to do the SIRT. The SIRT involves a repeat of the angiogram procedure but they would pump in radioactive goo instead of contrast. It is usually a one-off procedure.

I am hoping to have the angiogram next week and the procedure the week of the 22^nd Sept. The doc said I can also expect to be really tired for about 4-6 weeks, but apart from that (and the risk of some really rare nasties happening) that should be about it. He said from clinical trials already published they know that SIRT works for about 66% of people who try it and it usually holds the cancer in a steady state (ie no growth) for about 3-5 months on average. 

Watch this space.........