Eric’s Carcinoid Journey

Just a quick update; quick because there is no particular issues to report!  Good news!!

This treatment has gone even easier than the first.  Side effects are nil, and carcinoid syndrome is a none issue.  I don’t really know medically what has happened as a result of the treatments thus far, but anecdotally the results are very positive.  I’ve not felt better in years, no syndrome as far as I can detect.  Certainly my quality of life has improved.  Quite a positive outcome from my point of view.  I will have to wait for the doctors determinations later. 

Leonie has been in Hong Kong for a trade show all week so it has fallen on me to keep the business perking along.  Very busy and long days but I have the energy and strength to handle it without much effort at all, including getting to the gym for 2 to 2-1/2 hours every other day.  Weights and aerobics have done wonders for my strength and endurance in a fairly short time (2+ months).  Very little weight change, but significant muscle mass gain, so I imagine some fat has had to go.  Certainly the biggest gain (other than looking better) is my energy levels (EverReady Bunny, that’s me!)

Off to the clinic for followup blood tests this morning.  Take care all and good health to you!

 Eric

Hello again,

We’re back from Perth where I just completed my 2nd Lutetium-177 treatment.  I am now outside the CLEMENT study since I am taking the treatment without the Capecetabine chemo drug.  I had my last scan for this round yesterday (Monday).

This time they decided to use me as the experimental lab rat, and do a dynamic study of the Lutetium-177 uptake.  They did all the prep work (anti-nausea drugs, aminos to protect the kidneys, etc) down in the day-stay clinic and them moved me up to the scanning room and put me under the scanner while they did the actual injection.  Fascinating for them I guess, but since I couldn’t see anything less so for me (I think that must be how lab rats feel — LOL), but Leonie was there and said it was amazing how quickly the Lutetium spread through my body and then began to coalesce in the liver, kidneys and bladder.   I seemed to have eliminated the Lutetium much more quickly this time, because by the time I went to the toilet and finished my regular scan within the hour my radiation levels had dropped to dis-chargeable (from the hospital) levels. 

The treatment went fine, with a bit of nausea on both Thursday and Friday morning (the treatment was on Wednesday).  I actually felt quite fine by mid-day Friday and we left Perth and returned home Friday afternoon and I drove 3/4 of the trip home, stopped off at the gym for two hours and did my normal workout with aerobics and weights and felt really great, but certainly tired by the evening, so I slept like the proverbial log.  Saturday I spent the whole day at the office working, Sunday I worked at home and then went to the gym in the arvo for another two hour session, so this treatment certainly didn’t seem to slow me down.  Yesterday I drove alone up to Fremantle and back (six hours round trip) for my last scan, bloods and a fair-thee-well shot of Sandostatin in the bum.  No worries, no problems.  The drive is long, but arrived safely back home without problem.  Dr. Turner wasn’t available to meet with me, so I don’t have any new information on how the treatment is going.  Next treatment is scheduled for 14 January 2008.  I will keep everyone posted as new events or information comes available in the mean time.

Talking to the other study participants, they all said this treatment seemed to go easier for them (less side effects and less nausea) than the first one, although one is still strongly suffering the ususal carcinoid syndrome.

Leonie is off to Hong Kong Saturday, but I’ll stay back and keep the home fires burning (not really necessary anymore since the warm Spring weather has finally arrived!  That and daylight time has started so I can see lots of beach time on the horizon.

 Regards to everyone,

 Eric (the ‘rat’)

Well, it has been a few weeks since my last entry and I am now two weeks away from my next Lutetium-177 infusion.  Next week I must travel to Perth for a pre-treatment CT scan and Liver Clinic and the following week return for my week of appointments, treatments and scans.

I am doing great both physically and mentally.  Attitude is everything in my book and being positive and forward looking is the only way I see things.  Physically both Leonie and I have taken some positive steps in improving our physical wellbeing.  Beginning in September we joined the local health centre and we are both pursuing a workout program to reduce our weght, increase our stamina and strength and improve our flexibility.  Although there are some physical aspects to our work, we are largely sedentary at work and home. 

After the first month I have seen some significant improvements.  I have lost about 4-5 kilograms while gaining muscle mass, my endurance is improving daily and the physical workout is doing wonders for my body and mind.  The mental gains of meeting commitment and gaining accomplishment seems to have a made a real improvement in my overall health.  The carcinoid cancer doesn’t seem have any effects on nor be affected by the physical strain of the workouts which include both weights and metabolic excercises and I certainly don’t tire as easily as I used to.  Admitedly I was not in very good physical shape in the beginning so the initial work load reflected that but the gains in strength and endurance have been substantial over the past month.  It would seem to me that both physical and mental strength are a way of combating this disease, or at least not letting it affect you lifestyle. 

I have had no carcinoid symptoms to speak of since starting at the gym even though the single LAR Sandostatin injection has been wearing off over the past weeks. (Last injection was ~20 August).  So onward we go (and off to the gym this morning as well!).  Eric

Things seem very much back to normal for me, whatever normal is.  Once I finished the Capecitabine script all the little “problems” and issues seemed to quickly abate.  I haven’t noticed any side effects whatsoever this past week.  I have been working at 110% and although tired at the end of the day, that is just work related. 

What I have noticed is a decided abatement of the carcinoid symptoms, which indicates to me that the treatment is having a very positive effect on the carcinoids themselves.  We will have to wait until the next treatment session in October to see what has actually been happening.

Yesterday we were in Perth to visit Dr. Philip Claringbold, my oncologist.  He was very concerned about the “angina” like attacks that had occured, and said that most likely it is a rare side effect of the the Capecitabine.  He feels it is too risky to continue the use of the Capecitabine for the clinical study.  It seems like 1 in a 1,000 have this type of reaction and there is a real possibility of causing severe heart damage if continued.  This brought into question my continued participation in the study group since it is designed to study the combined effects of the Lutetium-177 and the Capecitabine.  However, a brief consulation with Dr. Harvey Turner resolved the matter favourably.  Dr. Turner said that I could stay on the study just using the Lutetium-177 treatment.  That was good news because I felt the treatment is being very effective for me.

Dr. Claringbold also wants me to continue the LAR injections of Sandostatin even though I have no symptoms just as a precaution.  So its back to my GP’s surgery this week for a double shot in the bum!!

 Stay well - be well

 Eric

Interestingly, I thought I had worked through the most of the post-treatment effects.  I have noticed some rather strange effects the past couple of days; and although I can’t link them directly to the Lutetium-177, they are very unusual for me, and the only unusual thing I have done recently is the Lutetium-177  infusion.  First thing that happened were several angina like symptoms that showed up last Monday night and lasted through Thursday. 

I spoke with Dr. Turner about them as to whether they could be related to the Lutetium-177 treatment or something altogether new.  He hasn’t had any other patients complain about pain, only nausea, but could not rule out the treatment as a potential cause.  He pointed out that the body is under some strain right now and that overdoing things could have unforseen affects.  He stongly recommended that I try and do less and rest more.  Good advice and Leonie had already given to me!  The only times these “attacks” took place seemed to be when I overly strained my upper body doing something physical. 

Having taken Leonie’s advise (and Dr. Turner’s) I haven’t had a reoccurance, BP is down to normal (unusual for me) and the nausea has effectively dissappeared.  It did come back slightly for two days after I finished the Maxalon on Monday.  Next session I will take it for a few days more.  It is very effective on me.

Today is Sunday, I feel well rested (even after a late night out last night for an awards dinner) and have no discomfort whatsoever.

Eric

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.