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New Developments

Thursday, December 9th, 2010

Hi all,

Well, we have had to deal with several new developments in the past month or so.

On the 19th of November I suddenly had a temperature spike, and because I was on Interferon, we immediately headed over to the Emergency Department (ED) at the local hospital in Busselton. They kept me overnight and diagnosed a UTI as a result of my suppressed immune system. My oncologist was contacted and I was instructed to discontinue the Interferon treatment until he and met as scheduled the next week. My GP sent me home with a script for oral anti-biotics and that seemed to fairly quickly begin to control the UTI.

I had an MRI of the abdomin and pelvis on the 23rd of November in Fremantle, followed two days later with a meeting with my oncologist Dr. Phil Claringbold. Unfortunately, there was very little he could tell us at the point, since he was missing the previous scans (Gallium 88 PET) from September. He continued to keep me off restarting the Interferon treatment until we had more data from the scans. We immediately overnight express posted the CDs of the September scans to him when we got home that afternoon, and he finally called back on Tuesday the 30th. He told me that the scans showed that there was apparrently more diffinition of the tumours in the liver and it appreared the Interferon was not doing much of anything at all to help. So he discontinued any further Interferon Treatments. He also told me there as very little else available in the public health sector that he could do for me. I wasn’t eligible for the current LU177 study because of the use of Capecetabine (an allergy for me). When I asked what might be available in the private health sector, he said there were several treatments readily available. I then placed a call to my original surgeon to see what he might suggest as a course of action since I had no one else that seemed interested in managing my case and Harsha Chandraratna has always taken an interest. I have to say that going off the Interferon was a great relief. It was only after going off it I realised how poorly it was making me feel. Without it I felt very normal, energetic and positive about things.

Unfortunately all that changed that same afternoon (Friday, 26 November) when that same afternoon I had an even higher temperature spike than the previous one and we immediately went and checked into the ED at Busselton Hospital. This time they kept me in for two nights as they diaganosed that the UTI had spread to a different infection, Epididymo-Orchitis. This was extreamly uncomfortable to day the least and the fever stayed up. Eventually, once they felt oral anti-biotics could handle it, they sent me home Sunday morning. Harsha called me back Saturday afternoon whilst I was still in the hospital and immediately to referred me to, who he feels is the best oncologist in Perth for my situation, Dr. Andrew Dean. I called Dr. Deans office first thing Monday morning. He is out of town but they made me an appointment for the first day he is back, 20 December.

Everything then was going quite normally with the infection slowly reducing, until Tuesday afternoon, when I began developing a shocking pain in my left eye and upper sinus over a period of a few short hours. I had this type of pain irregularly over the past 2-3 weeks, but with a little paracedamol and a couple hours eye rest it went away and was fine. This time it was different, the pain just kept increasing and the pain meds I had weren’t touching it. This was a real concern to us, because the Septemper scans had shown a gallium focus in this area of the left eye, indicating possible tumour(s). So after a quick call to the my GP’s surgery, we were off to ED at the hospital again. This time primarily for pain control and initial diagnosis. The next couple of days had the doctors getting the pain levels lowered to tolerable (mostly using morphine) and a new CT scan of the left eye. As we suspected, there are two tumours in the area, an 11mm involving the left eye inferior rectus muscle and a 7mm at the inferiorlateral margin of the left orbital globe. My GP then attempted to contact Dr. Dean and Dr. Chandraratna, and was able to arrange an appointment with Dr Jerome Freund at Perth Radiation Oncology. They feel that this specific site is best treated with radiation and usually responds very well to radiation treatment. In the meantime I am on fairly heavy doses of oxycondone hydrochloride for pain control and dexamethasone (sterioids) for reducing the inflamation.

So as you can also see, ’tis been quite a busy start to the Christmas season. I did feel well enough last night to go to our annual Moon Haven Company Christmas Dinner, which I greatly enjoyed as did everyone there, to see me!

I’ll be keeping everyone up to date as things develop over the next few weeks.

Until next time, take care of yourselves and each other, I certainly have an angel taking care of me and her name is Leonie!

Blessing to you all,

Eric

Posted in Carcinoid Cancer, Eye Tumours, Fremantle Hospital, Interferon Treatment, lu-177 CLEMENT study, procedures | 1 Comment »

First Month Done & Dusted

Wednesday, November 3rd, 2010

Hi everyone…

We’ll last Friday was my morning at Fremantle Hospital for follow-up blood tests, an appointment with the oncologist & a script renewal. All this at the conclusion of my first month on Interferon. The appointment with the oncologist went well, he already had the blood results by the time we had our appointment. His main concern was a significant drop in blood platelets. He wants to continue the Interferon, but wants to reduce it slightly at this point. So we have cut back to 4 injections a week. Sun, Mon, Wed, Thu. I am continuing them in the evening at this time, although one of the major side effects I am dealing with is sleep disturbance. I have found that if I take a panadol before going to bed, that seems to solve the problems, and I much prefer the initial “hit” of the drug to still come in the early morning.

My energy levels have recovered somewhat, although certainly below what I would like. I am able to work around the yard and house, although I find I need to take more breaks than in the past. The vegie garden is in good shape and I been able to cut down a couple of dead trees in the the backyard and I stay even with the house work as well. Today was a soap making day at Moon Haven, so I spent the morning preparing and making soap. Fortunately I had two able assistants to keep the line running. After finishing up there, and a bit of time down in the shop, I headed back into town for several errands at the accountant, the bank and the post office. No stamina problems today, probably because of the change in the Interferon regime. This is much more pleasant and easier to handle!

I have more blood samples scheduled for Friday and again 2 weeks after that. My oncologist wants to track the Interferon effect quite closely for the near future. I have a CT scan scheduled for 23 November now (that will be my next Fremantle visit).

Iwill of course keep you all apprised. In the meantime, stay well, take care of yourselves and each other!

Eric

Posted in Carcinoid Cancer, Fremantle Hospital, Interferon Treatment | No Comments »

First Week Behind Us

Sunday, October 10th, 2010

Hello all…

I just finished the first week of Interferon treatment and it certainly wasn’t the most pleasant time I have ever had. Most of the effects are very flu like, but without having the flu (the plus, being that I’m not contageous!). I have to say as the week drew on, I found I had less and less energy and stamina, but the only symptoms that seem to really hang on was a low grade nausea that was uncomfortable, but certainly not unendurable. Mainly I have had to deal with a general feeling of malaise and low energy levels. I did find energy in short bursts, for instance working in the garden for 20-30 minutes max and then needing to rest. Chills and a low grade fever was the other symptom I had to deal with.

It was good thinking to plan the shots from Sunday night through Thursday night, because by Friday night I was feeling quite human and almost normal and Saturday morning woke up feeling much more energetic. I actually went into work with Leonie on Saturday and spent the day in the office and even entertained our good friends the Briggs, Saturday night. Today was a quiet day (watching cricket, resting and a little bit of bookkeeping.).

I took the first shot of my next 5-day sequence about 2 hours ago, so we will see what the morning brings. But it will be certainly something I can deal with and I am enthused about the possible good it will be doing me in my fight! I did not have any reservations about taking the shot, infact I was almost eager for it, so convinced am I that it is really going to help me.

It will be interesting to see if my body adapts more this week, but I have a sneaking hunch that the tiredness that accompanies this treatment is not going to dissapear and I will have to deal with that over the coming months.

I will keep everyone posted as we go on, but it may get a bit more boring! Everyone take care of themselves and each other!

Hugs,

Eric

Posted in Carcinoid Cancer, Fremantle Hospital, Interferon Treatment, procedures | 2 Comments »

Ok, Here we go…

Sunday, October 3rd, 2010

Hello all,

Well, Friday early arvo (afternoon) was my first sub-cut Interferon (alpha-2B) injection. At first it seemed like a no-never-mind. In fact the trip home from Perth was uneventful, except for passing a very nasty auto wreck on the north-bound side of the highway, that obviously had resulted in at least one death. We got home without event anyway, but about 8:00 pm all of a sudden I was hit by huge flu like symptoms. Aches, chills, some fever, skin sensitivity, etc. A hot shower gave some relief and then directly to bed. Not the most restful of nights, but not too bad. I awoke several times, but went right back to sleep. It hit me about seven hours after the injection, which is about par for the course.

I wasn’t good for much on Saturday, but did have energy to go into town early, get a hair cut and when I got home, did a small (I mean very small) amount of gardening. Spent most of the afternoon watching India-Australia test cricket and by the evening I was feeling quite a bit betterl. Today (Sunday) I feel fine. Did some house work and will head out to the garden shortly.

Based on how I reacted (which was stronger than I expected), we decided I should inject Sunday night through Thursday night for my five days. That way it may give me Friday to recover and I may be fine for the weekend. Hopefully, as the body adjusted, these reactions will diminish (the norm is two weeks). We will have to see. I do feel that if the Interferon is hitting me this hard, then hopefully it is doing the same to the tumours!

It will be an interesting next few months. I look forward to the next blood tests the end of this month, and the scans in November to see what sort of results we are getting.

Take care of yourselves and each other!

Bestest… Eric

Posted in Carcinoid Cancer, Fremantle Hospital, Interferon Treatment, procedures | 3 Comments »

Sometimes You Don’t Get What You Want or Think You Need

Tuesday, September 21st, 2010

Hello All,

Just spent the day driving to Perth and back to see my oncologist, Dr Phillip Claringbold. We had hoped he would be able to tell us that I would be to start a series of treatments with LU177 in the near term. Unfortunately, while the next trial is November, it is using Capecitabine as one of the drugs in the trial. I had a severe reaction to that drug during the previous clinical trials and had to continue the trial without the Capecitabine. So even though Dr Claringbold would have been ready to put me in this next trial, he can’t because of my allergic reaction.

The next trial, using a different group of drugs with LU177 isn’t scheduled until March 2011. This is not particularly good timing for me, in that it would appear the sudden increase in Carcinoid activity may indicate that is is taking a slightly more aggressive form. So I certainly don’t want to wait around for it to do its thing.

Based on the recommedations of Dr Claringbold, he feels our best bet is for me to start on using Interferon as a stop gap measure. This is what I have chosen to do. So we will continue the monthly 90 mg Lanreotide injections, and beginning the end of next week, I will start self-injecting Interferon 5 days a week. We will do a blood/urine workup this week, then a followup again 4 weeks after starting the Interferon. Then at two months do bloods again plus an abdominal CT scan to track what is happening, particularly in the liver. I can expect to be on the Interferon for about six months.

There have been some fairly reasonable results in using these two drugs in combination, so hopefully I will amongst that group. I can expect some fatigue and flu like symptoms as the usual side effect and of course I will be watching what happens with great curiosity and anticipation.

It is unfortunate in its timing (isn’t it always), in that we are looking at a potentially really heavy workload at the shop. However, we will find a way to deal with that and soldier on.

I wish I had better news for everyone, but those of you who know, know this is one tough disease and we aren’t given easy choices in fighting it. But we will fight it and we will overcome it!

Everyone take care of yourselves and each other…

Bestest, Eric

Posted in Carcinoid Cancer, Fremantle Hospital, lu-177 CLEMENT study, procedures | No Comments »

It’s Back

Monday, September 13th, 2010

Hi All…

Well it took an extra week or so to get my initial report from the scans done last month, and the news is not that good. In a brief letter from my surgeon to my oncologist, he notes the latest octrotide scan shows a reoccurence of my carcinoid tumours and they seem to be in my lymph nodes and they are evidently not suitable for surgical intervention. This is not a particular surprising report in that we knew the carcinoid had gone active, just from the reoccurance of the symptoms, but the apparent lymph node involvement was a small shock.

I’m not altogether sure of the entire significance of the report, in that I haven’t spoken to Harsha (my surgeon) directly (I will call him tomorrow) and I will be calling my oconologist in a day or so, to make an appointment. I have a sense that I’ve proabably got a series of LU177 treatments in front of me plus more scans and tests. However, we will deal with it, and as we have in the past, we will get on top of it again.

I will post updates as information becomes available and treatment plans begin to firm up.

Take care of yourselves and each other!!

Eric

Posted in Carcinoid Cancer, Fremantle Hospital, lu-177 CLEMENT study | 1 Comment »

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 »

Six Months Post Treatment – No Issues

Sunday, December 21st, 2008

Hi Everyone,

Sorry I haven’t updated lately.  I had a bit of a motorbike accident in Bali in November which layed me up for a while, so I have mostly been dealing with recovering from those injuries.  All is much better now, broken collarbone is healing well, other injuries have healed but an internal infection in the left ankle is still giving me some grief.  I just got back to the shop for the first time in almost 7 weeks last Thursday.

In October, just before the Bali holiday, I had my 6 month post-treatment MRI scan with a follow-up with Dr Harvey Turner at the end of November.  Our visit with Dr Turner was all positive, all reports are good with no indications of tumour activity or growth.  Dr Turner expects that based on the study results thus far, they we can expect at least 18 to 24 months without reoccurance.  Thus far, in all his cases, he has only had to do a retreatment on two patients.  I will continue to have 6 month interval follow-ups for the foreseeable future to track any possible developments.

One of the interesting developments in patient care is a move by the Western Australian Department of Health to create a Centre-of-Excellence for Carcinoid Cancer for  Western Australia.  It will be run out the three teaching hostpitals in Perth where a standing board consisting of experts in the treatment of Carcinoid Cancer will review the care of all Carcinoid patients in the state and develop individual treatment plans for each patient according to established treatment protocols.  WA has already established its world reputation in the area Cardinoid treatment due to the efforts of people like Dr Harvey Turner, Dr Phil Claringbold and surgons like Harsha Chandraratna and many others.  For me it represents assurity if I require more ongoing treatment in the future, I am in excellent hands.

My focus now is accident recovery and weight loss.  I am on a serious program of weight loss control for a serious problem of overweight.  Thus far I am having excellent results, but I have a long way to go to get to my most desired weight (like 25-30 kg!).

All my wishes to all of you for a joyous and festive holiday season and a happy, healthy New Year!

Eric

Posted in Fremantle Hospital, lu-177 CLEMENT study | No Comments »

Months on and no change (that’s good!!)

Friday, September 26th, 2008

Hi everyone,

Sorry I have been so quiet recently.  Actually I have been far from quiet, but I also have been at times far from my computer or far from time to edit anything.  It really has been months since I posted.  In the meantime, Leonie and I have travelled to Turkey, Italy and Singapore on a mixed business and pleasure trip, did a major gift fair/show in Melbourne in August and Lee has just come back from a large fair/show in Sydney (I stayed home for that one, too much to do here!!),

I guess one could surmise that life has been a bit frantic for us since mid-May.  At last we think things will start calming for a bit, at least for the next few weeks.  Of course, that is just as we start coming into our busiest retail season.  Lee has some tentative plans for a return trip to Turkey in December, back to Sydney in February and now she is talking about attending some shows in Guandong Province, China in April.  I don’t really know how I keep up with her, it is a real challenge sometimes.  Fortunately for me, the Carcinoid is not an issue right now.

Everything has been great for many months now, I feel great, I do not really suffer from any of the normal symptoms, although we know there are still several small tumors in the liver.  I am scheduled for my definitive MRI next month at Fremantle Hospital to determine the overall efffectiveness of the study treatment.  I will be very interested in the results of that scan (if I can fit it in my schedule…hahahah  like I wouldn’t miss it!!).

Anyway I just wanted to let everyone know I am feeling very good, I am very busy and life is good, exciting and still fun!!.  I still run the junior staff into the ground any given day and I really do need at least 27 hours days, if any are available, to fit it all in.

Take care,  God speed, and good health to all.  I promise not to be so sporadic in keeping my blog up to date in the future (God willing and the clock slows down a little!)

Love and blessings to all…

Eric

I

Posted in Fremantle Hospital, lu-177 CLEMENT study, procedures | 4 Comments »

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