Archive for the ‘Carcinoid Cancer’ Category

Well it’s about time…

Sunday, August 22nd, 2010

Yep, that’s true, its about time I paid more attention to my blog. When I last wrote we were in discussions about starting a series of Lanreotide injections. There was some difficulty in finding a doctor to write the script and I finally contacted my original surgeon, Harsha Chandraratna, who was very surprised to hear I was not on sandostatin or lanreotide. His concern has always been potential damage to the heart valves and was immediately keen to get me started again. So about five months ago I started on monthly injections of 60mg. What I was noticing was about the 3rd week my syndrom symptions would begin to reappear, so I felt that probably the dose wasn’t high enough. Last month I told Harsha about that and we agreed to increase the dose to 90mg. But before doing that he wanted to run some new scans on me and didn’t want the lanreotide to interfere with the scans so its been about 7 weeks since I had an injection and I definitly notice it. I was enjoying an occassional wine or beer, but I stopped that when it was obvious that it brought on increased flushing.

Anyway, last Friday I underwent a neck to groin CT scan and a head to toe Gallium-Octreotate PET scan for the first time. Interestingly, Harsha has asked for an identification of any tumours outside the liver. We won’t know the results for a few more days, but when we do you readers will too.

What I have noticed recently is an apparent change in my metabolism. I can get shiveringly cold for almost no reason (besides it still being winter here). I can eventually warm up with extra covering and warm drinks, but it can be quite severe at times. The other thing I am watching is a gradual weight loss. I am not dieting, but nor am I eating big meals. I have plenty of extra weight to lose, so its not a bad result, but somehow I feel the two things are related, hence my opinion of a change in metabolism. Interesting.

As I said as soon as I know something more I’ll let you know, meanwhile take care of yourselves and each other!

Bestest…

Eric

Posted in Carcinoid Cancer, procedures, weight loss | No Comments »

Most Recent Followup

Tuesday, November 24th, 2009

Hi everyone,

A couple of weeks ago I had my MRI scan that had been scheduled after the October meeting with my oconolgist. Last Thursday we met with him to review the results of the scan. It turned out the scan was specifically limited to the liver, so it is unclear what if anything might be happening elsewhere, but the liver results were reassuring. Three tumours measured slightly smaller, three slightly larger. Like the CGA and 5HIAA results the previous month, a mixed result, which my oconolgist interprets as pretty much nothing is really going on, status quo so to speak. He is agreeable to putting me on Lanreotide if I wanted.

Leonie and I discussed this later, and we both agreed, that even if the symptoms, which are mild at worst, are directly related to the Carcinoid; that the real benefits to lanreotide would be the prevention of any damage to the heart valves (a side effect of too much tumour generated seratonin in the blood stream. Even more importantly, results from other parts of the world have shown a fairly consistent if unintended side effect is the reduction in size, or in some cases the dissappearance, of carcinoid tumours.

Our plan is to approach our GP for the script, but if he has a problem qualifing for it, my oconolgist will help him out (it is a little unusual for a GP to prescribe anti-cancer drugs here). I am sure it will be helpful, not only that, but the monthly shot is in the arm not the bum!

I will continue with the semi-annual blood and urine marker tests to track any change in activity.

I continue to feel fine, and I am working as hard as ever. This week I hope to start my flight training for my pilots license (ultra-light aircraft). This should be really fun, a bit challenging, and something I always wanted to do. Consequently, Leonie’s birthday present to me was the flight training.

Take care out there all of you and take care of each other,

Eric

Posted in Carcinoid Cancer, procedures | 4 Comments »

Time for a Catch Up

Saturday, October 31st, 2009

Hi everyone,

I’ve been a bit lax in keeping my blog going… just so many irons in the fire, I sometimes forget to pull one or two out. We have been extreamly busy these last few months. Leonie and I just got back from our second two week business trip to China in the past five months (actually Leonie’s third, my second). Both have been great and fascinating tirps, very fruitful and we met many new and old friends. This last visit was my first visit to Qingdao, and what a lovely city. Qingdao was the sailing venue for the 2009 Bejing Olympics, and I can see why. Very modern, clean, unpolluted with a great sailing harbour with good strong winds.

I had my BCC removed shortly after returning from that first China trip and all went well, although I had a pretty large hollow in the side of my nose. It is gradually filling in and the doc says in about a year it should not really be noticiable at all. All went well and I was in and out of the hospital the same day. (That’s the way I like to do it.)

About six weeks ago I paid a visit to my GP. Leonie and I both thought I was beginning to see the reimergence of some of my carcinoid symptoms. Some diarreah and flushing. So we thought it might be a good idea to get a new 5HIAA (urine) and CGA (Blood) reading to see if there had been any change. We got the results about a week later and found 5HIAA had gone up some and the CGA had gone down some (mixed result I would say). So we made an appointment with my oconolgist in Fremantle for mid-October. When we saw him, he didn’t seem particularly concerned and I think he thinks I’m being a bit over reactive; but he did agree that I should probably have an MRI scan since it had been a year since my last one. That is to be scheduled later in November and we then can then see if there has been any definitive change since last year.

In the meantime we have plenty of things to keep us very busy, including, I hope, some time to spend in the garden. It desparately needs some attention after a very long, wet and storm winter. Spring is very much here and summer is just around the corner. We are hoping to for short holiday in Bali in February, before we start our next round of 2010 fairs and exhibitions. I’ve promised everyone I will stay off motor bikes this time. No use in ruining two holidays!

I’ll let everyone know the results of the MRI as soon as we have them. Meanwhile, everyone take care of themselves and each other.

Eric

Posted in Carcinoid Cancer, Fremantle Hospital, procedures | No Comments »

The Journey Continues

Saturday, May 23rd, 2009

Here it is end of May already. Winter has arrived with a roar this past week. Heaps of rain, and blowing a gale! We really needed the rain and there has been plenty in these systems.

It’s been a bit over a year now since I completed my last CLEMENT Study treatment. Everything is fine, no symptoms and no signs of any tumour activity. I need to call Fremantle Hospital to see when my next follow-up is scheduled. Leonie and I just got back from a 2-1/2 week trip to Guangzhou, China and Hong Kong. A tough trip, all business and almost no play time. However, I had no problem keeping up with a lot of travel and long, very long days. Huge amounts of walking while visiting all the trade fairs.

I finished my eye surgery with a bit of laser treatment a week ago. Everything went really well and I am still getting used to seeing so well. My driving has been a lot safer too (according to my main passenger! LOL).

My newest issue is a small basal cell carcinoma has been found on the side of my nose. Actually I have had it for quite some time and suspected BCC, but given everything else going on, I kept putting off seeing the Doc and getting a biopsy. It is large enough to require a bit of plastic surgery when it is removed to rebuild the side of my nose. It should all happen in the next month or so. It isn’t any big deal though, I’ve had a couple BCCs before which were removed without a problem. The spoils of my ill spent youth on the beaches of Southern California!

That’s all that happened recently.

You all take care of yourselves and each other!

Regards, Eric

Posted in Carcinoid Cancer, Fremantle Hospital, lu-177 CLEMENT study | 2 Comments »

Autumn Update

Wednesday, April 8th, 2009

Hi Everyone,

I guess I would have to say that no news is good news. My Carcinoid continues to remain quiet (and I dare say in some sort of remission) and as before I am feeling ever so good and keeping absolutely flat out busy. The results of our February trade fair in Sydney were our best over and we have just this week finished filling the orders. We have at least a dozen more that have come in since, so everybody is jumping, including me.

My eye surgery went exceeding well, near perfect vision in the left eye now, although the doctor wants to do a little cleanup of some left over plaque next month after we return from China (more on that in a minute). It is such a change to more or less see the same with both eyes. I’ve missed having proper depth perception for several years and it is taking some adjusting to, to be accustomed to having full sight again! I will undoubtedly need reading glasses at some point, but actually except for reading fine print, I don’t seem to have much problem.

My weight program continues with also good results. I’ve lost over 15 kg since December, so now I am halfway to where I want to end up. It has taken some time to break through the 100Kg mark, but now that I have, weight seems to be coming off a little more easily. None of my clothes fit anymore, but that is a nice problem to have.

For a few weeks Leonie has been planning a buying trip to China, and I decided I would like to accompany her. So we fly out to Ghangzhou on April 23, spend 3 or 4 days attending the China Import/Export Fair, then take the train to Hong Kong for 4 days to visit two trade fairs there, and then back to Ghangzhou for another trade fair. Looks like we might have a couple of days off, unless we fly to Qingdao where we have been invited for a factory visit. We get back on 8 May, so it will be a very busy two weeks. Then we have to start getting ready for the second Sydney gift fair in July. It is an amazing pace we maintain, and thank God, that I have the energy and health to do it.

Oh, and as if that is’nt quite enough, I have a small basil cell carcinoma (BCC) on the left side of my nose that I need to get rid of next month as well. I’ve had a couple over the last 20 years or so, the result of too much sun when I was younger without doubt.

Take care everyone, stay well — be well
Regards, Eric

Posted in Carcinoid Cancer, cataracts, eye surgery, weight loss | No Comments »

New Medical Adventure

Tuesday, January 13th, 2009

Since things are seemingly quiet on all other medical fronts… that is the carcinoids are staying inactive, my Bali bike injuries are virtually healed and I am on a serious weight loss program (8½ kg in the first month)… I decided now was a good time to take care of that pesky cataract in my left eye. Vision in that eye has seriously deteriorated over the past 18-24 months and my optometrist felt is was time to do something about it. I had an IOL (Interocular Lens) implanted in my right eye several years ago, but its vision was never as bad as the left eye is now. This afternoon I have an appointment with my eye surgeon, to review my case and hopefully set a surgery date. It is no big deal, having had it done once, I know the process and it is realatively quick, done without general anaesthesia and the results are pretty much instantaneous.

I know my brain will have to adjust, it has been using the left eye for close work and the right eye for distance for several years now and it will have to readapt to using both eyes for distance. New glasses will take care of the close work. I am so looking forward to having “normal” vision again.

I’ll Keep you all posted as things progress. Take care and be good!

Eric

Posted in Carcinoid Cancer, cataracts, eye surgery, lu-177 CLEMENT study | 1 Comment »