Archive for the ‘Carcinoid Cancer’ Category

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…and now it’s something new (cont.)

Thursday, March 24th, 2011

Sorry about that, I got interrupted and thought I lost what I had written up to a point, but turns out it published. I was just getting to the scan results.

The Gallium68 PET and CT scans gave back somewhat mixed results. The examining pathologist feels the chemo is generlly helping, and although there has not been any reduction in tumour size, there are metabolic results that are positive. Dr. Dean has continued the chemo treatment and I am now just into week 3 of the 4th cycle. We return to Perth next week for an appointment with Dr. Dean followed presumably with Cycle 5 Chemo on Wednesday. With the diabetes under control I am finding the side effects of Cycle 4 to be almost nil with one major exception. That is lypmphadaemia in both feet and cellulitus infection. I have also had a bit of dry mouth and some fatique. There has been no nausea and other side effects I have had in the past just aren’t there this time around. I feel alert and clear headed. We suspect the earlier side effects could have been as a result of diabetes more than Chemothereapy. The diabetes most likely is the major contributor to the lymphaedemia, but the cellulitus is probably the result of the weakened immune system from the chemo. I am on anti-biotics for the cellulitus and it seems to be responding well.

That is about it for news. I am sure we will have more information next week after we meet with Andrew Dean, where I hope to get some answers to longer term treatments and expectations. Until then, take care of yourselves and each other.

Blessings to all… Eric

Posted in Carcinoid Cancer, Chemotherapy | 1 Comment »

Into Cycle 3

Friday, February 18th, 2011

Hi everyone,

I am now into the beginning of Week 2 of Chemo Cycle 3. So far the results and effects are very, very similiar to Cycle 2. Last few days I’ve been dealing with dry (cotton) mouth and dearhoea. The later is the most difficult and remains hard to control. Two tabs of Condine Phosphate 3 times daily is helping but not stopping. Mornings are fairly good, but afternoons and evenings I have to be very careful what I am eating and drinking. Drinking is the hardest because of the dry mouth. I’m not noticing much else going on except some edema swelling in the lower extremities. Hairloss is still restricted to the scalp, no where else at this time. Cycle 2 peaked about the 3rd day into Week 2, so I’ll have to wait and see if that is true this time as well, or if it is happening already. If so, it’s not that hard to deal with!

I am now scheduled for a Gallium68 PET scan and CT scan on the 1st of March. This will give us our first actual quantitive measurement of the effectiveness of this Chemo treatment other that the qualitive measurements of how I feel and how I am responding. I am a little nervious as to the potential results, even though I have this really strong feeling the treatments are having the desired effect. We shall see in 12 days!! Actually, 13 when I am scheduled to meet with my Oncologist!! If we have progression then I will go straight into Cycle 4 on the 3rd.

I will say that perhaps there is one significant difference between my response to Cycle 2 vs. Cycle 3. During Cycle 2 I had the desire to be more active and get things done, but found real difficulting in staying in focus and actually accomplishing anything. This time I have the desire and the ability to stay focused and I am able to actually perform. That is a definite plus!! I guess one really can adapt to handling these chemicals!

Bless you all, take care of yourselves and each other!

Eric

Posted in Carcinoid Cancer, Chemotherapy | 2 Comments »

Into Round 2 of Chemo

Friday, January 21st, 2011

Hello to Everyone…

Well, this week (Monday) we started Round 2 of the Chemotherapy. Same routine as Round 1, 1st day is hydration, Carboplatin followed by more hydration then Etoposide. Finished about mid-night Monday night so had long days waiting for evening doses. Day 2 and 3 though are quick enough with just the Etoposide. The Doctor has me stay a forth night just to be sure we had the nausea under control (there was none). Then home yesterday afternoon.

The effects of Round 1 were interesting. Not much except light nausea for the first 3-4 days, then the taste went quickly. It was hard to find something that tasted halfway normal, except for bitter, which seemed to stay true all the way through. The taste thing taste thing pretty much lasted a week or so, with a sore mouth and hard to find things to enjoy. I eat huge amounts of food to keep my weight stable (that is the steroids, I think). I did find ice cream tasted ok, a little off, but the coolness on the mouth was nice.

About 9-10th day the hair loss started. But we had the hair removal team on standby, so by the next morning it was no more. Everyone seems to like it including me, and we had a bit of fun larking around with the cutting to make it an occasion. Easy to take care of now. I also notice my beard has almost stopped growing. I shave about every 3rd day now. By far the worst was the diarrhoea that started up heavily near the end of the 2nd week and was with me until I got back into the hospital this week. Beside ending up with a very sore and tender bottom, it could be virtually explosive and come without virtually any warning. I just had to deal with it and plan any travels away from home very carefully (and not always with success) :-(

I don’t know what to expect this time, except more of the same, but starting at a lower level of tolerance I suspect. At least I learned something that should help with the mouth and diarrhoea. (I ate too much fruit, looking for taste for one thing.) I also found that being very accurate in the timing of when to take your meds is very critical. An hour either way would make a big difference. Another effect was the change in my metabolism. It has increased significantly, leaving me hungry all the time. I was told this is the effect of the steroids.

That is about it for this morning. I will probably do a mid-round blog now to compare the two rounds. I may have more comparisons to make.

Until then everyone look out for each other and your selves!! Blessings to all

Eric

Posted in Carcinoid Cancer, Chemotherapy, Eye Tumours | No Comments »

WHOA! A Whole Lot of Things Going On…

Tuesday, December 28th, 2010

Well, to everyone, everywhere I hope you are enjoying your year end holidays and holding up your end of the numerous and ongoing feasts!

Since my last entry a whole lot of things have changed, including a major turn in treatment direction.

I met with my new Radiation Oncologist on the 15th of December. Very nice and clever doctor (Dr Jerome Freund. We reviewed my history and what options were there in the very short term, he & us feeling we needed to act quickly to try and reduce the size and swelling of the tumours in the left eye. About the only option was radiation, and he wasn’t really to enthused about that, given that most likely outcome would be possible severe damage to my vision in that eye, and possibly without effect on the tumours. But it appeared at that time, with what he wanted to achieve, this was our best way forward. We scheduled appointments for the following Monday for making the radiation face mask and an MRI of the head.

Drugs have kept the pain completely under control, although I met with my GP during that week, and he was unhappy that I was getting any pain breakthrough and upped my OxyContin-CR to 30mg/2 x daily. This has been completely effective.

The following Monday (20 December) we were back in Perth for the mask making, MRI and a late afternoon appointment with my new General Oncologist, Dr Andrew Dean. Everything went fine, the mask making was an experience, but no problem, and the people are just fantastic!!! We arrived at Dr Deans office on time and it was FULL!! Talking to people later that day, they say it is ALWAYS like that. No matter how far behind he is in his schedule, he will always take whatever time it takes to meet, talk, discuss, recommend, whatever needs to be covered, regardless. They love it and him… no one complains waiting 2-3 hours extra (I know we certainly didn’t).

Dr Dean is really on the very leading edge of treating NETs and is something to behold when he gets going. First thing he did after reading my Medical Case History, beautifully prepared and maintained by Leonie, was to get on the phone to his friend Jerry (Dr Freund) to understand what he was trying to achieve with the radiation therapy. (I must also mention that my Ophthalmologist was/is not happy at all about the possible effects of this treatment.)

Andrew (you just can’t call him Dr Dean) then told “Jerry”, that he would SMS him later, but that he was going to offer me a couple of recommendations and let me choose. First thing he said, getting off the phone, was that he felt radiation had only negatives against it Vs. almost no positives, most likely would be ineffective on these tumours and damage or blind that eye. BTW, Leonie in doing her usual on-line research, found that carcinoid cancer spreading into the eye orbit is extremely, extremely rare. It appears, according to a paper she read, that there have been only 35 cases discovered so far (worldwide). So no one has much experience it all. Andrew, though was looking at what type of carcinoid tumours these were most likely to be and making his recommendation based on that.

That led to his second recommendation, that the character of my carcinoid has changed sufficiently and significantly and would probably respond very well to a specific Chemotherapy Plan he had. He therefore wanted me in the hospital ASAP to start treatment immediately. First he wanted a PET MRI to give him a baseline of where we are now, so he sent me running to the other side of the hospital/clinic to get bloods done (this is at 5:45pm) while he & Leonie tried to arrange the PET MRI for the next morning (calling in a few favours along the way). It was too late in the day (everyone was gone) to know whether we were going to be successful the next morning but the request had been Faxed over and he wanted us to check with the Imaging Clinic in the morning to see what they were able to do.

We left shortly after that, a bit stunned by no only the rapid changes in direction we were making, but the efficiency and urgency he had put on my case. After dealing with public health for the past four years and being in the country rather than the city, we are just not used to that. We spent the night at friends home, close by and by 7:30 I was on the phone to the clinic. She had my papers in front of her and told me they were working hard on it and most likely it would early the following morning (7:00 or 8:00 am). I said then definitely not today, and she answered saying no, they needed a bit more time to get set up for me. She would call me later that morning with the appointment time. That set the plan-of-the-day for us, we left for Bunbury and home for us to make a morning appointment with my Ophthalmologist (I still wanted a vision baseline) and we were home (after slipping in a little Chrissie shopping by 3:00pm.

Next morning 4:30 we were on our way to a 8:00 at the clinic in Perth. They had me for 3 hours to finish and check the scan, then we were over to the Hollywood Hospital next door to check-in at 1:00 pm. In we went, at 4:00 I was on my drip, 2 litres of saline and at 6:00 they started the first drug, Cisplatin, for 2 more hours, followed by another hour of saline drip and finally 1 hour of Etoposide. We finished around 10 that night! Wow, what a day, what a week… so far!!

Dr Dean’s play is to have me go through 2 three week cycles and do a Gallium 68 PET Scan at the end of the 6th week to see what progress we have made. He is quite confident we will see good results. Oh, and the PET scan we did this week? Turned up nothing, contrast didn’t pick up a thing, but he is not bothered. He had my August Gallium 68 PET available to compare.

Next day was a 1 hour drip of Etoposide, and on Friday the same thing again. We were actually done and on our way home by 2:00 Friday afternoon.

So what are my impressions so far? WOW… all that happened to me, and just this week. Maxalon is taking care of any nausea beautifully, I have no pain because of the OxyContin-CR, taking some steroids to control any swelling in the eye, and oh yeah! Doctor took me off Lanreotide and put me back on Octreotide, feeling it is heavier duty and more effective at this time. We need to relook at the dose and timing a bit, but I’m happy, even with the bigger fatter needle. It was an absolutely painless shot this time, even though the nurse was nervous! I wasn’t.

So what’s happened so far? Nausea picked up a bit by Sunday, was probably a bit worse yesterday and none so far today. The Maxalon takes care of it, it more the anticipated timing that is critical, that I stay on top of it. A lot of diarrheal yesterday, but none so far today. Dry cotton mouth was bad yesterday (rinsing-gargling 4 times a day) – today is fine, no problem. I’m supposed to be heading into my worst days here to Saturday, don’t know. I am full of energy, working hard (in the home office) but relaxed and happy… unbelievably happy (ummmm drugs perhaps!? LOL). Way too too talkative and I know that’s the OxyContin. Poor Leonie, having to listen to me babble on about pretty much anything that comes into my mind. She is at work right now, so that is where she gets her break.

There! Done! I know this is long, very long, but so much has happened in a very short time, god only knows what will happening next week!

We had a fantastically lovely day Christmas, hot, sunny and air conditioned in the house! Family and very close friends made it a very special day for me and a very close one for my family. I was able to telephone my three daughters and bother in the U.S. and talk to them all as long as we wanted (thank you Skype!).

Bless you all – and my you keep safe!

¡Un abrazo Fuerte! ERIC

Posted in Carcinoid Cancer, Chemotherapy, Eye Tumours, Radiation Treatment | 2 Comments »

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 »

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