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.Â
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’)
Leonie left a link to your blog on a post in my blog about my chromic myeloid leukaemia journey.
I’m so glad to read that your treatment has gone well. Clinical trials are such am important part of research. In addition to the obvious value of the therapy for you, you are helping so many other people by participating.
Enjoy your very busy schedule. Your travels sound very exciting.
Hi. I am a person living in South Africa who has Carcinoid. I had an op. 8 years ago which removed the main tumor from the Ilium area. Now I have metatsases on the liver and behind the pancreas. I have had a Nuclear scan done which shows very good uptake of radiation in the receptors of the tumor. I tried to enroll for treatment in the Erasmus Medical Centre in Rotterdam recently only to be told that they are not taking ‘foreigners’ ant present into the program as they are bound to take Dutch people first.
I was wondering if you could supply me with any information regarding treatment centres in any other countries. I didn’t know that Australia also had a centre for reasearch, that sounds very interesting.
I am glad that your disease was helped with treatment and would like you to correspond to me about your progress if thats ok. Regards and all the best. Dennis
Hi. I also live in South Africa and have been diagnosed with Carcinoid tumour. I am hoping to get in contact with others her in RSA to discuss the various treatments and the prospect of eradicating the tumour completely or is this not an option.
Hello Peter,
Complete eradication is not easily accomplished, mainly because by the time symptoms show up and the correct diagnosis is made, the primary almost invariably metastases to other organs (liver being the most common). However, treatments such as that which I have undergone have been effective in stopping the activity of the tumours and/or in reducing the overall tumour load. I’ve written to Dennis Keightley asking his permission for you to contact him directly. Please send me your email address to eric@moonhaven.com.au
Best wishes, Eric
Hi again Peter, could you send me your email address to eric@moonhaven.com.au
Thanks, Eric
Eric, my son has carcinoid with metasis to liver, bone, lung, lymph nodes and I need to get him to where he can get the LU 177. It has not been approved in USA and his liver could fail according to the liver specialist within the year. I need information about how I can get him to a Dr. that could give him the LU 177. We have researched the Fremantle Hospital and Dr. Turner, however, we need specific information as to how we can go about getting this treatment for him.
We would need appointments – maybe referrals and if you could help us with any information we would be eternally grateful.
Dear Eric i am glad to hear of the success you have had with carcinoid. I have just been diagnoised with carcinoid syndrome. With an octreocide scan they have a positive result with a 4×5 cm area of intense uptake projected over the left lower thorax close to the diapham. A cardiac MRI was conducted to confirm te primary tumor is in fact in my heart. There is also abnormal increased uptake with in several other sites within the thorax. Anterior mediastinum at the T9/T10 level, the right at the T4 within the mediastinum,in the region of the left lobe of liver and 2 sites in the right lobe of the liver. Wow what a mouth full but i hope to get into some sort of clinical trials if a solution to my mess is not at hand. This Dr Turners name came to me via an oncology forum from an American site. My on oncologist has refered me to the Peter Mac Institute in Melbourne and has not even mentioned this Dr of yours. Any information that you could provide would be much appreciated.
Hi Eric, I have of 6 months ago had a R hemicolectomy after being diagnosed with carcinoid of the iliem. Prior to surgery it was expected that the tumor would be benign, however it was cancerous and also ? metastised to the omentum, I now find myself under the care of an oncologist. I am very confused about the treatment, my oncologist says we do nothing and it is highly unlikely that this will be the death of me, I am very concerned as I am reading that I should be having biannual scans, blood tests and urine tests ?? Can you tell me who is the guru of carcinoid tumors in Australia, my oncologist doesnt seem to be listening to me. Thanx for sharing your story with others.
janine,
Can you contact me via email please (eric@moonhaven.com.au). Also, where do you live and who are the drs you are seeing now?
you also might want to visit http://www.carcinoid.com.au . This is a website my wife established some time ago and it’s members (Aussies) will have recent info on doctors and treatments.
Stay well!
Eric Gully
Hi Eric
I have pancreatic neuroendocrine metastes in the liver (11 small 6 larger) and need Lutiteum treatment urgently. We live near Sydney and wondering if Prof Turner will accept people from NSW and howlong is the wait list?
Thank you for your blog, it is very informative!
Keep getting well,
Maria
Hi Maria,
Because the trials were sponsored by the state of WA (rather than a drug company), they had been available only to residents of WA, but I believe the treatment is now available in all capital cities. I suggest you contact Harvey Turner directly, I am sure he can direct you to a clinic or hospital in NSW that can provide the lutiteum treatment or can tell you if it is now available to you in WA. I really don’t know anymore.
His contact details are:
Prof. Harvey Turner 08 9431 2888 jhturner@cyllene.uwa.edu.au
I hope this is helpful.
Best regards, Eric
Hi Eric
Thanks for the info! I know the treatment is available in Melbourne but the wait list is 12 months! There is no facility in Sydney (not enough money, my prof says) and there is a limited facility in Brisbane- treating only QLD residents….
I will try contacting Fremantle …thanks so much for your help! Was the treatment overall successful for you? Can you have a second one at a later date?
Your blog is really inspirational, thank you!
Health and happiness,
Maria
Hi, I’m from Alberta, Canada and I will be receiving the LU177 treatment in Edmonton, Alberta shortly. I would like any info re: side effects etc. that you had during treatment. I would like to be prepared for what ever. Thank you.
Hi Rose…
Unfortunately I have been a bit lax in keeping my bloy up-to-date, which I will get on to doing later today!
The major side effect of the LU177 treatment at the time of treatment in generally just nausea. Since it is being done under clinical conditions I would expect they will give you anti-nausea meds. They only mistake I ever made was during one treatment I turned it down so I could stay awake and watch the Ashes (cricket). The anti-nausea drugs did tend to make one quite sleepy. There were some additional meds given to protect the kidneys, etc.
I continued with anti-nausea drugs for about a week after treatment. Later after-effects usually were worst about the 2nd or 3rd day after treatment. Mostly lassitude, tiredness and general malaise. In effect it is a very mild form of radiation sickness. This wore off quickly and by the 5th day I usually felt better than I had before the treatment.
HOw you feel afterwards might be also impacted by what additional drugs they give you with the LU177. In my case, the first treatment included capcetabine (sp?). I had a severe agina reaction to that, and for consequent treatments that was not given to me.
Our treatments were generally done in groups of 4 (it was a clinical study). We arrived early in the day patient clinic, had temps, BP, ect measured and a shunt put in each wrist for later use. We were treated sequentually, so at the right times we were given some sort of tranquilising drug just to relax us, then a drug to protect the kidneys, pancreas, etc. This was ollowed by some anti-nausea meds and then finally the LU177. During the LU177 injection, they also had an injectible quick acting anti-nausea hooked up ready for use if required. For me the whole event was not a problem, and except for a few moments (probably less than 30 seconds) of slight nausea during the injection, all quite uneventful. We were kept in isolation for several hours, with hourly radiation readings taken and when they dropped sufficiently, we were released to go home. The latest I ever left was about 4 in the afternoon (I was the last in the sequence that day). The first person left about 2.
Hope this helps you. Since I know nothing of the protocol they intend to use on you, I could be way off on what you are in for, but I suspect it will be very similiar. These protocols have been published amongst the researchers and should be well enough known by your treating doctors.
BTW the results for most of the patients in the trials was very good. In my case, because I could not tolerate the capcetabine, I did not have the tumour reduction my fellow particpants enjoyed, but it did stop the syndrome effects for about 2 years, and as of my last scans in November ‘09, no tumour growth. I just finished a new set of scans on Friday last week, so won’t know the results of those for a few days, but I Will be posting in my blog.
Best wishes for a positive outcome,
Eric