During this current admission I had a CT scan (that I mentioned in a the previous post) to assess where things are at with regards to my bowel obstruction and the current issue of obstructive Jaundice.
What I didn’t mention is what it found with regards to my cancer, and unfortunately, its not good.
There is significant progression of the liver disease over a very short period of time. The dominant large lesion is in segment 7 of the liver has doubled in size and there are multiple new lesions in the 0.5-1cm range throughout the liver, with existing lesions also increasing in size. There is also further development in the lymphadenopathy around the renal arteries and in the general retro-peritoneal area, including increasing lymphadenopathy around the hilum of the liver. The infiltrative disease around the liver could well be responsible for the biliary obstruction that I have, and may have been responsible for the duodenal obstruction as well.
Basically its pretty bad. I have missed three rounds of chemotherapy now due to the complications and hospital admissions over the past month, and that is likely to be a big contributor as to why my disease has progressed. However, it is of such rapid disease progression that my oncologist tends to think that it may have starting progressing under chemo, even thought my last scan was stable (and relatively recent).
So what does all this mean???
Well, basically it means I need to get back on to chemotherapy as quick as possible in the hope we can slow down the growth. If in fact regrowth was beginning to happen whilst on chemo, it suggests that chemo is losing its efficacy, and that means i’m starting to run out of options.
In the mean time I have to get past the current main issue, which is my biliary obstruction.
On Thursday I had my ERCP under a general anaesthetic and it unfortunately it wasn’t successful as they couldn’t get access to the ampulla at all due to the duodenal stent being in the way. This means that I have had to go for a PTC drain insertion best described in the video below rather than by me.
This procedure was due to go ahead on Thursday afternoon until I spiked a fever of 39.0 degrees. It was deferred and I was started on IV antibiotics in case this was choleangitis. Choleangitis is an infection of the biliary system and can be a very rapid onset sepsis and can lead to septic shock. The fever I had was absolutely miserable with rigors and lasting for about 5 hours. I haven’t had one since thankfully, and the thinking now is that instead of choleangitis, it was probably a septic shower as result of manipulation around the biliary system in the failed ERCP. Fortunately the latter as a diagnosis is much better than choleangitis.
On Friday I went for my PTC insertion under light sedation and they got as far as getting the drain into the duodenum via my liver. It was a difficult access just because of the location of the left lobe of my liver relative to my ribcage, so they weren’t able to get the stent in. The plan is to go back under general anaesthetic and put the stent in so that I have internal and external biliary drainage. I am currently biding my time in hospital until that can happen early next week and then all things going to plan start chemotherapy the week after that.
So as you can see, there has been a lot happening over the past few days, both in terms of medical management and developments, as well as the processing of the CT report and what that actually means. What it really means is that I am getting down the last ditch therapies now for treating this cancer, and it has established that if you give it an inch, it will take a few dozen miles with that liberty. What treatments are left as options are really speculative, and whether or not I will get response is equally as speculative. Hannah and I have processed this and understand that it means I am unlikely to make Christmas this year, and my time could be up sooner rather later as the decision to go palliative is getting closer and closer.
In someways this hasn’t been as hard to process as you might think, and I think that is in large part due to the fact that I have had the better part of 5 1/2 years with this illness to do this processing. It is however, a brutal shock back to the reality I face, as it has seemed like the past 6 months has been a holiday, as we have seen Elise’s first few months of adventures in this world. It has been an awesome escape from reality as we watch new life blossom…
But now the holiday is now over, and I have to get back to the business of dying. I plan to do that the best way possible, as not everyone has the privilege of anticipating their own end. So often people’s end times are full of regrets and catching up with bucket lists. I don’t have either of those, I am grateful for the life I have lived, I have been given extraordinary opportunities to embrace it in all its beauty, God has blessed me enormously. I plan to enjoy every last moment, savour its delight and its low times. It’s all part of the package.
Until next time..
After 6 rounds of FOLFOX and Avastin, it was decided that the toxicity that was associated with the Oxaliplatin was starting to get too much, and so round 7 and 8 were only Avastin and 5-Fluoro-uracil.
I have probably lost about 50% of my sensation to light touch at the end of my fingers, and the effects of Oxaliplatin can continue to worsen for a period of time after stopping. Those effects are also cumulative with each round and generally considered to be irreversible. The irreversibility is perhaps a worst case scenario, as when had Oxaliplatin 5 years ago, I got to the point where I couldn’t touch type or do up buttons without looking at what I was doing, but after about 6 months I had recovered at least 95% of that sensation back.
The sequelae of this change in regime are twofold. Firstly, chemo should be much more tolerable. Oxaliplatin was the most toxic of the three agents I was on, and it was a big reason why I had to stop work last year; it took longer to recover from, and I never rebounded back as well between rounds.
Secondly, there is a real risk that response to therapy will change, and not for the better. There is every possibility that the response that was demonstrated on the last CT could have been due to Oxaliplatin, or the FOLFOX/Avastin combination. Stopping it, and continuing on 5-FU and Avastin alone may very well have a much reduced efficacy. This is something that we won’t really know for a few more rounds. For the time being, my CEA levels continue to slowly trend down, indicating that after two rounds of only Avastin and 5-FU, there isn’t a dramatic reversal in fortune. I think on first principles, its safe to assume that in the absence of Oxaliplatin, I am on a less effective treatment, how that actually works out in reality is something that only time will tell.
Overall, the last two rounds of chemo have been an improvement, although I haven’t recovered as quickly between rounds as I might have expected in the absence of Oxaliplatin. Hopefully over time this will improve.
This week we are down in Dunedin visiting Hannah’s parents and family and enjoying showing off Elise. She was well behaved on the flight down and seems to be adjusting to the somewhat abrupt change in temperature at the other end of the country.
In other news, I have had a CT recently which showed further promising results, of which I will go into detail in another post once I have cast my own eyes over the report and images.
Until next time…
My latest CT scan shows good news.
The CT was actually before Christmas, and I had the results a few days later, but I haven’t had the chance to have my own eyes on the scan until the last few days and actually be able to quantify what ‘significant’ response is….. and its actually pretty impressive.
The liver lesions, the retroperitoneal lesions, the lung lesion and the mesenteric lesions have all either shrunk or remained stable, and there is no new disease. This is about as good as we could hope for with my treatment. There were really only three categories the CT result could have fallen into:
- No response, where disease continues to grow uninterrupted, the worse case scenario;
- Partial response, where disease might remain stable with very little advance;
- or Response, where the disease stops growing and actually begins to regress.
The third category being the best outcome. What makes it even more significant is that the scan was only done after 4 rounds of chemo, when it would usually be done 6 rounds in. So what we are seeing is significant early response, arguably even better.
What this means is that I will be around for longer yet. I will almost certainly get to see my daughter as well as being around for the very early part of her life. How long this response continues is another question entirely, and only time will tell. Perhaps the biggest deciding factor is how long I can continue on Oxaliplatin. This is the most toxic of the drugs I am on, and it is doubtful I will be able to sustain 10 rounds at full dose. At some point we will have to either dose reduce it, or stop entirely. This is compounded further by the fact that it’s toxicity is cumulative and I have already had 8 rounds of it 5 years ago. At the moment what I notice in particular is the peripheral and autonomic neuropathy. Cold feels like pain (particularly in the week after chemo), I have reduced sensation to light touch at my finger tips, and I have increasingly noticeable postural hypotension, related to sluggish sympathetic nervous response when I stand. This is also compounded by the lack of sympathetic innervation in my right leg after my retroperitoneal lymph node dissection last year. What this basically means is every time I stand up, I have to be careful I don’t pass out as the body doesn’t get blood to my brain as quickly as it normally does with a change in posture.
Further to all of this is the fact that my most recent round of chemo (round 5) has been deferred for 2 weeks due to neutropenia. My blood test the day before chemo revealed a neutrophil count of only 0.29, which is too low for chemotherapy. It would also explain my more-than-normal fatigue during my well time, as well the 10 days of rampant mouth ulcers I had. Christmas day was the first day for 10 days I could eat with no pain and I am yet to figure out if God was being symbolic or ironic… Neutropenia in itself is not too bad, but I am at further risk of infection, and neutropenic fever would necessitate a hospital admission with IV antibiotics. So far no drama on that front.
So I end the year with the good news of the CT scan, the semi-good news of the delayed chemo (more well time), and the perhaps more significant implications of how future chemotherapy may impact my health, with increasing toxicity, both neuropathic and haematological.
Until next time…
This is a belated update of a CT scan that was done back in mid December. The reason for the delay has largely been due to waiting to find out it’s implications.
The scan showed ongoing stable disease, with further reduction of the hepatic lesion we noticed on PET back in May last year. The retroperitoneal node has increased by about 2mm, but within the margin of error, and there is some questionable new lymphadenopathy around the superior mesenteric artery and the inferior mesenteric artery of unknown significance. It is called unknown significance because it could be reactive, or it could be malignant, and only time will tell which it is.
The implications are that because this is disseminated disease, surgery would not realistically be an option. Surgery is largely reserved for localised focussed disease, and would likely cause more problems than it would solve in the current situation. This doesn’t mean surgery is off the cards permanently, as with all things, there is always ongoing review, but with all things being equal, surgery is unlikely to present itself as an option again except in a palliative setting.
So the plan for the time being is ongoing chemotherapy until the cancer stops responding to it. The rounds have been progressively getting rougher, so at some point toxicity will come into play as well. My next scan should be around mid March, which is fairly soon, and as always will help direct the next 3-6 months of my life.
Until next time…
I have to apologise for the lack of updating over the past few weeks. This is largely due to the feeling of not having anything new to add, and also just being really busy with work. Both of which in their own ways are actually good things. Work is definitely a therapeutic distraction from chemotherapy. It is in the process of returning to work and enjoying it, that I am denying cancer the opportunity to ruin my life (that was if I was to anthropomorphize an inanimate disease).
The last two rounds have been progressively tougher to tolerate. I’m not sure if this is because my memory of rounds over 6 months previous have been selectively erased, or because they actually are, or because in the interim I began to get used to feeling well again. This most recent round (44) was definitely rough in terms of nausea. There was a lot of dry retching over toilet bowls, breaking out in sweats, and generally feeling miserable. Ironically, the bounce back to wellness post-chemo has been better though compared with the previous two rounds. Rhyme or reason with chemotherapy is often lost, and each round is as predictable, and as unpredictable as the previous. I think as the routine slowly settles back in, it is easier to accommodate the intrusion into my life.
Perhaps one change between my last update and now is that I have decided to move forwards in areas of my life such as work. This may or not may be a fruitless endeavor, but I am keen to advance my career, and am beginning to make moves with regards to getting involved in research, and considering the step up to registrar level sometime in the future. Most, if not all of this hinges around what my next scan will show. Either it will be non-response and widespread metastatic disease, signalling the beginning of the end, or it will be responsive, signalling a longer, rather than a shorter life expectancy (or somewhere in between which will just make the shades of grey harder to interpret). Hopefully it will be the latter, and plans will continue afoot. The next CT scan will be in early September sometime.
In other slightly related news, I’ll be giving a lecture to the third year medical students on Monday again (I did the same last year) speaking on patients perspective of disease.
Until next time…
Three days after I got back from Peru, I had a CT scan. It was actually booked whilst I was away, despite repeated requests and information about my absence for the month of August, so the original appointment was rescheduled to the Thursday after getting back in NZ.
Essentially, this CT showed exactly what we suspected it would. The cancer is still growing, but at a slow rate. The lymph node that began growing on the last CT scan (para-aortic) now measures 41 x 37mm in size, previously measured at 40 x 31mm. One of the other three nodes has increased by 1mm across its shortest axis, whilst the remaining 2 nodes are the same size.
This progress in growth still satisfies the criteria for stable disease. The cancer is growing, but its growing slow enough to be considered still responding to the chemotherapy. This basically means, that for the next 3 months or so, until the next CT scan, chemo will continue as per the existing fortnightly regime.
Interestingly I was booked into another oncologist’s clinic last week, and this one (who I had not met before) was astounded at how many rounds of chemo I had done. Nice to see I’m breaking ground on that front, I think I’ll buy the nurses all cake on round 40 :-).
Until next time…
Today I met with the oncologist. It is part of my fortnightly routine, only this time included some extra discussion about the consequences of my recent scan.
Essentially, when the scan was discussed amongst the radiologists, it was established that although from scan to scan I have had stable disease, when you compare a recent scan with a scan a year ago, what you see is gradual change. This means that even though my disease has been stable, there has actually been slow, gradual change over a much longer period of time.
So the question of the moment is, what does this mean for my management? Well, it hasn’t been until relatively recently that ‘stable disease’ has been a desirable end point of treatment in oncology. In the past, if cancer showed any sign of non-response at all, it was considered to be unsuccessful, and chemo was either stopped, or the treatment regime changed. Now, since stable disease is in fact considered a worthwhile endpoint, treatment will often continue even if there is no progression, or in my case, very slow progression. Added to this is the fact that within the public system, we are out of treatment options. The next line of treatment would be cetixumab, a monoclonal antibody that costs around 3000 NZD per round, on a fortnightly regime. I am currently getting my tumour tested for the K-ras mutation to see whether or not my cancer would likely be a responder to cetixumab.
The final outcome of all of this is: treatment will continue as is for the time being, likely to be reassessed at the next CT scan in 3 months; and secondly, the consideration of the addition of cetuximab if my cancer is the wild-type variant. On balance, I’m not such a fan of bankrupting ourselves to add a few months extra life-expectancy that cetximab would offer, especially when you consider how many vaccinations the money spent on cetuximab might buy in the developing world, and the lives it would save spent there. The money spent per life ratio is somewhat more beneficial if spent in a cost:benefit context. People say you can’t put a price on a life… however the reality is that some lives come at a cheaper price than others, and we seriously over spend in the developed world.
Until next time..