Eric's Carcinoid Journey

Last scan for this session was uneventful, as they all pretty much are.  Sometimes I think you have to be partly a masochist to spend an hour and a half in a CT tunnel.  Anyway, that is all behind us now for this session and it is really good to be home (even if it meant a three hour bus ride, since the trains were all down!). 

Nausea, if that is what it was, peaked last Thursday evening at about 36 hours post-infusion, Friday was much better and by Sunday I was feeling absolutely normal.  Even though the Capecitabine is at half strength, I still continue to take the anti-nausea pills each morning and I am sure that helps.

I am looking forward to getting back to work this afternoon after a week of enforced laziness.  I was able to complete several projects and tasks while in Perth,  but lacked the interest (or desire, or energy, or mood) to do much more.  As with any new treatment, you go in with a little trepidation, and positive expectations.  I found the expectations well reinforced and the trepidation a bit too unfounded.  After all the tales of nausea and feeling poorly, it turned out to be nothing worse in my case than a long, very long, lasting stomach ache and general lethargy.  I have to say, however, in all honesty, that nausea is not something I have ever really suffered from.  Even in my days in the Merchant Navy, I was never seasick, so I expected not to be too bad based on my life’s experiences, but for me it was bad enough to be unpleasant.

I will continue the Capecitabine for another eight days and followup bloods for eight weeks.  Then I suppose we will hear when the next infusion session is scheduled.  I must add that this treatment gives one a very positive outlook, knowing that the treatment should be attacking these little bludgers everwhere at the same time.  So I am barracking for the Lutetium-177!

Until next time – Eric

Eric had his 3rd set of scans today – arms held over his head whilst lying down has not proved to be the most comfortable position, especially when he has to stay still for 30 to 40 minutes at a time! Bloods were also taken.. Eric arms are definitely looking a little worse for wear with all the blood that has been drawn over the past few days.

The nausea seems to be settling and Eric is a lot better today than yesterday.

Dr Turner also took time out to show us the scans so far and we got to see how the Lu-177 laced octreotide is being distributed amongst the tumours. It was obvious even from first glance at the scans that Eric’s tumours are taking up the Octreotide very readily. The scans show that there are 2 larger tumours in the liver with several (6 – 8 it looks like) smaller tumours peppered through out the liver.

There is also a tumour either in the intestine or in the pancreas …which from previous scans we strongly suspect it is the pancreas.

There also appears to be two tumours which lit up in the chest area. As we don’t yet have a CT scan of the chest we are not sure whether they are in the lung or bone.  We will know for sure next round of treatment as Eric will have a chest as well as an abdominal CT scan. This means even longer in the CT tunnel with his arms over his head! These are new tumours which we have not seen before and shows a coninuing spread of the disease, which is a little disheartening.  We are now doubly glad that Eric is having the Lu-177 Clement treatment as this means that all Octreotate recpetive tumours are being treated not just the ones in the liver!

Eric gets to rest for the weekend and then it is another set of scans Monday along with the blood tests and then finally home to Busselton.

Eric is starting to encounter his first bouts of nausea.  In Dr Turner’s words Eric is feeling a ‘little delicate’. We haven’t resorted to the maxalon injections…yet.

The ‘uncomfortableness” began about 4.30 this morning  and Eric took a maxalon tablet early which helped for an hour or so.  The discomfort has gradually turned to a general malaise .  He is also experiencing his carcinoid flushing more regularly.  While Eric is not incapacitated he is certainly not his normal cheery self!
With the maxalon and navoban anti-nausea tablets Eric is managing, although as the day progressed he has certainly gone quiet and is quite prepared to rest or watch TV.

Eric had his second scan today as well as another series of blood tests.  There is another scan tomorrow, then he can rest for the weekend and then a final scan on Monday…then it’s home to Busselton.

After a free day yesterday we arrived at Fremantle Hospital at 8.15 am and went straight through to the Day Surgery Unit.

There we met the other three participants in this chapter of the study and Eric was allocated his bed for the day. Jim our extremely dedicated and organised nurse started on a very precisely timed regime of anti-nausea drugs, injections and then infusions to help protect the kidneys (amino acids). One by one each of the participants were infused with the octerotide laced lutetium-177 . One by one we saw that a minute or so after the infusion began each felt a small wave of nausea…not debilitating as the regime called for a shot of anti-emetic so this was controlled extremely well.

We have to say that Dr Turner and his team have worked long and hard at getting the protocol down pat to the point where the participants are made as comfortable as is possible at every point in hte treatment. If they can combat a problem they will. Refining the protocols has been a significant benefit to being part of this study…everything they learn helps then next group of patients.

The nuclear physician looking after the group then gave the boys a run down on the toiletting procedures. As their urine was “hot” (radioactive) they had to follow procedures to ensure that it was not sent into the general sewers… in fact the urine is collected and kept until it is safe to dispose of…apparently a month or so. The set up involved lots of lead shielding and bottles!

After the infusion was finished Eric had a small carcinoid flush and continued to do so throughout the rest of the afternoon …as did the others. The rest of the day was spent waiting for the two bottles of amino acid solution to run through the drip. Periodically our Physician would take radioactivity readings…and each of the men were released to have their scans when the elvels ahd dropped to safe levels.

Blood was also drawn at hourly inervals.

Finally Eric was considered safe and was sent off for his scan. Meanwhile Leonie was briefed on the various anit-nausea medications, oral and injectable, to help Eric over the next few days as the effects of the treatment kick in.

We were then on our way to Ro and Laurie’s (our home away from home) at 4.30 pm with Eric feeling fine, just a little tired.

The week started Monday after an early morning trip from Busselton to Fremantle Hospital (three hours drive). It was a full day of testing and scans. We also met with Eric’s oncologist, Dr Philip Claringbold. Dr Claringbold is overseeing the Lu-177 CLEMENT study, so he is now doubling up as Eric’s oncologist.

Dr Claringbold prescribed anti-nausea drugs as well as the Capecitabine tablets. The Capecatibine is the drug being used in the study to hopefully accentuate the effectiveness of the Lu-177. It is this effect that the study is really looking at. Capecitabine is normally a chemotherapy drug used in the treatment of breast cancer and has been known to cause significant nausea.

In the case of the CLEMENT study the dosages used is about half the breast cancer treatment rate and so it is expected that the nausea from the drug will be significantly reduced if not felt at all.

There were transmission and CT with contrast scans, blood tests and of course the collection of the 5HIAA 24 hour urine kit.  Dr Harvey Turner took quite a bit of time to explain all the procedures and answer our questions and while Eric was having his scan took Leonie on a guided tour to the day surgery unit so we would not get lost in the morning. 

We had Tuesday off ….while Eric carried his collection bottle in a discrete bag around Perth… and returned to Fremantle Hospital Wednesday morning at 8:15 am to the Day Surgery Unit.