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.........  

A long overdue update - 20 rounds down

Gosh, I can't believe I last posted an update in March and now it is July. Since my last update there have been a few more ups and downs, as one would expect, but things on the whole are pretty good at the moment so this provides the opportunity for me to sit here and ponder.

In terms of my treatment, I completed my 10th round of Folfiri back in March and was sent off on a closely monitored "chemo break" in the hope it would be longer than my last one which lasted 3.5 months. This allowed me a few weeks to recover some of my energy and get things as back to normal as possible at home and with the kids without the disruption of so many hospital appointments and feeling a bit yuck. We took the opportunity to take a family holiday to the Sunshine Coast in Australia and treated the kids to Australia Zoo, Seaworld, sunshine, beaches and lots of swimming. It was a lovely break from reality and on the whole my energy levels were such that I was able to keep up with the kids and enjoy the trip.

On our return I was due for a CT scan to see how things were going and unfortunately this showed that the cancer was growing back again and quite rapidly. It was mirrored by a rapidly rising CEA and the decision was made to start back on chemo ASAP (another try with Xelox (Oxaliplatin plus Capecitabine) on a 3 weekly cycle). Chemo break over in just 10 short weeks. The positives were that a) it still hadn't spread beyond my liver and b) Xelox worked well last time. The negatives were that a) Oxaliplatin is pretty nasty stuff and b) the more chemo you have the less likely it is to work. It occurred to me that even though my cancer has responded well to treatment so far, it also appears to grow quite rapidly in the absence of treatment and I am rapidly chewing through my treatment options.

I was gutted about the prospect of starting back on chemo so soon, although in retrospect it wasn't just the prospect of the chemo itself but of the huge disruption it causes to my family, friends and our routines. People naturally kept asking the same questions - what drugs this time, it worked last time for you didn't it so it'll be fine, how many rounds, how long for, what's next. The answers I was giving over and over were exactly the same as when I first started on chemo back in January 2013 so this added to the whole feeling of "here we go again." Shit.

So round 1 (again) was on 4th June and round 2 was last week. I had a brief hospital admission a week after round 1 with a fever which did not turn out to be serious, and I was delighted to see my neutrophils were holding up better than they did when I had Folfiri. I have now had 20 rounds of chemo in total and some of the side effects are getting harder to control. I am finding that I am wiped out for about a week but start coming right after that and on the whole am able to enjoy the other two weeks. I am due for another CT scan after round 3 to see whether or not its working, and if it is, then the plan is to continue to 8 rounds, but this will largely be driven by the toxicity and the dose of Oxaliplatin may have to be reduced or stopped earlier than that. What's next? Who knows. At the moment please don't ask as I am just trying to get through each round one at a time.

One of the pros of Xelox versus Folfiri is that I shouldn't lose my hair this time. It is growing back quite nicely and I even treated myself to a proper haircut a couple of weeks ago. I guess to the outside world it may look like I am getting better.

The pondering I have been doing lately relates to the question "what would you do if you were given x months/years to live?" It turns out, that for me, it is "carry on carrying on." But take stock and enjoy the good times, the simple pleasures and being alive. You certainly know what a good day feels like when you've had a run of bad ones. Just the other day I delighted in taking the short walk to my son's school to pick him up at 3pm, chatting with him on the way home, playing xbox with him upon our return. The next day I went on a preschool trip with my daughter and relaxed into it rather than being on edge the whole time about where we had to be and when. I enjoyed every moment. Prior to my diagnosis I would have probably still picked my son up from school and gone on the trip but I doubt I would have viewed them in the same way. It's about slowing down and enjoying the simple things more.

Four more rounds of FOLFIRI

Ok, now its starting to get harder.

Since my last update, I have had four more rounds of FOLFIRI and with each round, three jabs of GCSF (a growth hormone to stimulate white cell production to combat the immunosuppressive effect of chemo) and constant antibiotics. Add to that the myriad of anti-nausea drugs that I need to take with each round of chemo and my body is starting to tell me it has had enough. In the earlier rounds of chemo I was able to regain about 80-90% of my usual energy levels, just in time to be hit with the next round. The last couple of rounds have not been so kind and I went into round 9 feeling quite lethargic. It is the kind of tiredness where sleep does not seem to help and suddenly the day to day tasks all seem a bit too hard.

In mid Feb I had a CT scan to see how things were going. The good news was that there had been no more disease progression (phew) and the three tumours in my liver that were visible in December were still there but had shrunk a little. Overall my Oncologist was happy with this and so the current treatment plan is to have one more round of chemo (FOLFIRI round 10) and then have a chemo break until things start growing back again. I can't express at this point how relieved I am to have a break in sight as I am feeling utterly worn down at the moment, both emotionally and physically.

I don't recognise myself in the mirror anymore. Between the number 2 haircut, medication-related bloating, weight gain and huge dark circles under my eyes, its fair to say I no longer look like the person in my blog profile picture. I try not to care too much about how I look, but its just one more thing I feel I have lost through this whole awful journey.

Since my last update I also made the decision to finish up at work. I have always enjoyed working and prior to my diagnosis was very career driven. Of course that stopped the day I was diagnosed (strangely it was that sudden) but my desire to work in an area I was skilled in remained. I was fortunate enough to get a contract with the Ministry of Health and they were very flexible and understanding employers indeed. However it had got to the point with my illness that I felt I was unable to give them enough of my time or energy and felt that something had to give. The decision was made in late Jan and I finished up at the start of March and as it turned out the timing could not have been better as the timing co-coincided with my plummeting energy levels. It is a bit sad for me to think that my working life is probably over, although I still have a little hope that a time may come where I am in a position to pick up another small piece of work. At this stage it is hard to know how realistic that is as this whole process is so full of unknowns.

On a happier note, Bryan and I have planned quite a few trips this year so that we have lots to look forward to. The first big event is a two night trip to Auckland this weekend for the Bruno Mars concert, and the second, a week on the Sunshine Coast in May with the kids. If all goes to plan then our trip to Aussie will be 6 weeks into my chemo break so fingers crossed I will be feeling a bit better.

FOLFIRI rounds 3, 4 and 5

It's clearly been a while since I have blogged as I have just realised that I have had three rounds of chemo since my last update.

Round 3 was in late November and like round 2, I ended up in hospital with a neutropenic fever. I was admitted once more and given broad spectrum IV antibiotics and fluids, however after 3 days I still had a fever (which at its peak reached 39.5 deg) which tended to come on during the afternoon, every afternoon, and was accompanied by a wicked headache. After three days on the antibiotics and no improvement, the antibiotics were stopped. The doctors tested a few theories to try and locate the source of infection but to no avail. At this stage, from my point of view, the worst part of all was that it was my daughter's 4th birthday the next day and it was looking like I was not going to be able to get out of hospital to spend the day with her. I was gutted.

The good news is that once I told my medical team why I was so upset, they decided to let me out for the day so I could at least go to her birthday party and spend some of the day with her. It was then very odd (after being out for most of the day and feeling ok) to have to head back in that evening and sleep in hospital rather than sleeping in my own bed.

Two days later and still no improvement they sent me for a CT scan of my chest, abdomen & pelvis (my usual set) as well as a head CT. The results came back pretty quickly and showed that my head was clear (phew), my liver mets were slightly smaller than in my previous CT and there was no new disease. Great news. The other thing that showed up was that a little pool of fluid that had been there since I had my bowel surgery in Nov 2012 had increased in volume and it was thought that was the probable source of infection. I was put on a different set of IV antibiotics and over the next few days slowly started coming right. After 8 long days and nights in hospital, I was finally sent home. 

Round 4 was delayed a week due to the hospital admission, so it didn't happen until 18th Dec. In an attempt to prevent yet another hospitalisation I was put on long term prophylactic antibiotics and sent home with a jab of GCSF (a growth hormone that stimulates the bone marrow to produce more white cells) to give myself the day after chemo. The good news is that it did the trick, and I managed to stay out of hospital.

The other good news was that I got a three week break over Christmas/New Year rather than the usual two weeks (partly due to stat days and partly due to us going away for a few days). Round 5 was on 8th Jan and once again with the help of prophylactic antibiotics and self-administered jabs of GCSF I have remained in the comfort of my own home.

Round 6 of 8 is due next week, and here's hoping for another drama-free round. 

8 things having cancer has taught me

Adapted from http://www.huffingtonpost.com/annie-buckley/lessons-from-cancer_b_4248090.html

I recently read a Stranger’s blog post which was essentially the Top 12 things she had learned throughout her cancer journey. I found I really related to it so thought I would have a go at doing my own Top 10 list, but in the end I only came up with eight. Here they are:

1.       Don’t sweat the small stuff. When you are feeling really wound up about something, step back and ask yourself is it really that important? What would happen if this thing did or did not happen? Does it really matter?

2.       Nothing is as important as people. We cannot exist in a vacuum and we cannot live this life alone. 

3.       People are generally compassionate, vulnerable, complicated and, most of the time, trying to do the right thing. Give people (and yourself) a break.

4.       In the face of tragedy, no one thinks they know the right thing to say. And maybe they don't, but if you're the recipient, listen for what's helpful and let the rest go.

5.       One thing I have found over and over during this challenging time is that I am incredibly grateful for so many things. Take time to sit back and enjoy the world around you.

6.       Everybody is different and every illness has its own path. We can learn from statistics and data, but we can never know exactly what someone else is experiencing.

7.       It's possible, but not necessary, to cram a whole lot of things into one day. (I know from experience, and likely you do too.) But what if we all did a little bit less, a little bit better, and enjoyed it all a whole lot more?

8.       Get/have at least one of the following: income protection insurance, serious illness cover or life insurance. Although money is not the be all and end all, when you unexpectedly find yourself out of work, not having to worry about money can be a saving grace. If you can avoid adding financial woes to an already very stressful time then why wouldn’t you? And none of us think it is going to happen to us – I sure didn’t.

That’s it from me this week.Til next time.........

The week that was

Unfortunately since my last blog, I have had an eventful couple of weeks. The Sunday night following my last chemo round I ended up spending the night vomiting and woke the next morning with a 38 degree temperature. When undergoing chemotherapy, a 38 degree temperature is enough to cause a little panic amongst medical professionals as the chemo itself leads to a weakened immune system meaning that you do not have the ability to fight off infection the same way a well person can and things can go downhill pretty quickly. So this lead to a trip into Wellington Hospital ED and even though the waiting room was chocka-block I was seen within minutes of arriving at ED and was hooked up to IV antibiotics and fluids. After several hours I was transferred to the Cancer Ward and spent the next two nights there under close observation. I bounced back pretty quickly, and the worst part was probably that we quickly had to sort out alternative arrangements for the kids for school and preschool pick ups, drop offs, night time routines etc. Bryan and my parents managed to sort all that out, but it really does cause quite significant disruption to everyone's already busy lives that they could do without. Me on the other hand, just had to sit back, rest, and let others take care of me.

At this point I would like to take this opportunity to pass comment about the fantastic level of care I have received since diagnosis. My multi-disciplinary team (medical oncologists, radiation oncologists, surgeons, nurse specialists etc), have been outstanding, as has every other doctor, nurse and radiologist I have come across. Shame I can't say the same for the hospital food, but you can't win them all :o) One of the meals I had during my most recent stay was so bad that I regret not taking a pic of it and posting it to Facebook! All I will say is that runny scrambled eggs, lumpy yet runny mashed potatoes, mashed carrots and soggy cauliflower should NEVER be served together.

On the same day I became unwell, leading to the hospital admission, my hair started falling out. Initially it was quite similar to a change-of-season malt, but over the next couple of days the rate of hair loss accelerated so that by Tuesday it was coming out in small handfuls, and when I washed it later that morning I was getting large handfuls of wet hair coming out. By the end of my shower I gathered it up and put what looked like a small furry animal into the rubbish bin. That's when I decided I had had enough and it had to come off. So on Wednesday morning whilst still in hospital I asked the lovely Health Care Assistant (and resident hair cutter) to give me a #1. Lovely.

A week on, I am still shedding quite a bit of hair, but at least it is short so much less distressing than getting handfuls of long hairs, and at least its not clogging up our shower or vacuum cleaner. I am also aware that some people experience total body hair loss, so that may be coming. The upside will mean no more shaving my legs  :o)  the downside could be loss of eyebrows and eye lashes  :o( Time will tell.

As noted in an earlier blog, this hair loss was not totally unexpected, so I had been to see a "wig lady" a few weeks ago and purchased a lovely looking wig not dis-similar to my own hair at the time. The main difference being it has a few highlights and I figured it would save me big dollars at the hairdresser. For the first couple of days post head-shave I wore the wig in public, and then took it off when I got home as I was much more comfortable without it. When in public I felt like people were looking at me like "we know its a wig - you are not fooling anyone!" and on top of that, it felt like a toasty warm hat and the weather here had been (quite unusually) stinking hot. So I decided to ditch the wig. I figured if I was ok with it then why should I care what anyone else thought.

At first I was a bit worried about what my kids would say, but they both thought my new hair cut was so funny because I had a boys haircut. So we had a laugh and said silly Mum with a boys haircut. They also knew when I was wearing the wig that it was a wig and don't seem to care either way.

Since posting a photo of myself with my bald head on Facebook I have been inundated with compliments about how good I look, which I find quite comical as I never received that kind of attention when I had hair! Regardless, I understand people are just trying to be supportive and it gave me the courage to ditch the wig in public. I get a few odd looks when out and about but I figure people who know me will get used to it, and people I don't know don't matter.

The worst encounter I have had since going bald happened to be with, of all people, a cancer society volunteer (!) at the Cancer Day Ward yesterday when I was there for round 3 of FOLFIRI. The conversation went something like this:
HER "Ohhh your hair is growing back!"
ME (feeling a bit crook from the chemo so a little less patient than normal): "No, its actually falling out"
HER "Oh you should sort yourself out a wig"
ME "Um, yeah, I have a wig but I don't feel comfortable wearing it"
HER "Why is that? I'm sure you will get used to it! There are some really natural looking ones now."
ME "Yes, but I still don't want to wear the wig. It feels fake."
HER "Oh well, there are some head covers you can get from the cancer society that are actually pretty trendy"
ME (steam now coming out my ears, refraining from swearing at her as I am sure I know the hats she is talking about and I suspect her version of trendy and mine are quite different) "Mmmmm hmmm. I will look into it."
Thank goodness for her she took the hint and moved on at this point. I am not sure why, but she didn't seem to be able to grasp that I prefer to go natural. If I am comfortable with my GI Jane look (as one of the young registrars referred to it as) then I don't know why other people should have a problem with it. Rant over.

Lets's hope this round of chemo is less eventful than the last. Til next time......