Eric's Carcinoid Journey

Hi Everyone,

Well, it’s all over, for the most part…..

We’ve finished my last treatment of the clinical trial and the immediate follow-up scans. I do have blood work to be taken for the next 8 weeks, but other than that it’s done and over. How do I feel? Great! What’s my attitude? Positive and happy!

I had the normal, for me, side effects of mild occasional nausea, a bit of tiredness, (and a bit of ill temper as well) for the past week and a half, but I know from previous treatments, that by this weekend, everything should be back to pretty much normal. There were only two of us from the original four at the day clinic for treatment this time. Both of the missing participants had had recent surgery. One had a hernia correction unrelated to carcinoid, and his platelet count was too low; and the other had a bowel resection (we don’t know the cause, but assume it was carcinoid related).

Prof. Harvey and I discussed my initial results while reviewing the scans taken over the four treatment sessions since last July. There has definitely been a reduction in the uptake of octreotate on the smaller tumours (an indicator that they have been significantly reduced in size and activity) and with no growth on the others and no new tumours! They have appeared to have been hit quite hard by the treatment. A much more definitive MRI scan will be done in six months to determine the overall effectiveness of the trial. Possible ‘one shot’ future treatments with a single follow-up scan might be on the table if it is found necessary or the tumours appear to be becoming active again.

It is time for me to name names and thank the staff and doctors at Fremantle Hospital! Specifically and not in any order, Brenda and Jenny (Dr. Turner’s PA) at reception, Julianne and Sarah (Nuclear Technicians) who did my scans and kept me comfortable during those long scans; Paul and Phil, nuclear physicists; Jim, Bill and Jazz who managed and oversaw our day treatments; and most certainly Professor Harvey Turner! The dedication, warmth, sympathy and kindness shown by all the staff and doctors at Fremantle Hospital has been utterly fantastic. I can only say thank you and God bless you all!!

I’m off Sandostatin now, unless the symptoms show up again and so life is returning to normal. I’ve spoken to two of my daughters (Melanie and Allyson) in the last 48 hours (their birthdays are only two days apart) and they are naturally pleased and happy with the results and how I am feeling. I’ll call my third daughter (Cyndie) this weekend and see how she is getting on and fill her in on the latest (BTW it’s Cyndie you see in the background of the above picture while watching a sunset over the Indian Ocean).

Leonie has been very busy setting up a new website, Carcinoid Cancer Resources for Australians (www.carcinoid.com.au). It’s not fully functional yet, but it is getting there quickly and I expect she will be spending much of her time over the next three days getting it into order.

More to come (there always is…) Stay well, be good,

Eric

Here it is Easter Monday and this week (Wednesday) I start my last Lutetium-177 infusion treatment. It seems a little strange that it will all be done with this week, except the follow-ups.

It has, to say the least, been a very busy weekend. Easter weekend is historically our busiest of the year, and this one has continued in that tradition. Leonie had given most of the sales staff the weekend free, so it really fell on the two of us, plus our juniors to ‘man the pumps’. It has been a very sucessful, if not a bit frantic, weekend; but I am glad it is behind us. Now I need to start focusing on this week’s treatment.

Because of the Easter Monday holiday, the hospital scheduled my MRI and transmission scan for last Thursday. So now we needn’t be in Perth until tomorrow evening, except Leonie has a doctor appointment in Perth tomorrow afternoon so we will need to leave shortly before mid-day. I expect my reactions will be similiar to the past treatments, so I know what to expect and when. Lee must be back in Busselton Wednesday night, so I will stay with friends in Perth for my followup scans on Thursday and Friday and then drive south Friday afternoon for the weekend and then up and back on Monday for the final scan.

I spoke to Dr Turner on Thursday as to what is going to happen in the next few months. He said he would schedule a followup definitive MRI in six months to determine the effectiveness of the treatment. Tumour activity has been arrested so there is no need for continuing LAR Sandostatin injections.

That’s about it for this entry. More next weekend when I get back from Perth.

I hope all of you have had a lovely Easter week and weekend. Take care, be good and stay well…

Eric

Here we are at the end of week 8 following my third treatment. I acturally start the final round of treatment next week. Side effects still appear to be nil. We just got back from a week in Sydney where we attended a major trade show and fair. So now our plans for June-July have firmed up. We will fly to Istanbul for a week in early June to meet with our distributor there and attend the Euro-Asia Beauty Fair. Then it will be on to Rome-Florence to spend two weeks with my brother and sister-in-law. Well then have a week to ourselves for random travel then first week in July, back to Istanbul for a followup meeting and finally back to Perth a couple of days later. I have great energy resources than I am calling on. Busier than a bird dog in tall grass. My work demands are quite large right now, but I am able to keep up and stay on top. I sleep well (probably the sleep of the exhausted). I have used a few 5mg sandostatin boosters in the past couple of weeks, as some minor amount of carcinoid symptoms have occured occassionally.

Thursday, next week I go to Perth for my abdo MRI, a transmission scan and meeting with Dr. Turner. The following week on Wednesday, I have my final Lutetium-177 treatment for this study. I am looking forward to this, and I think I am looking forward to re-instituting my LAR Sandostatin, which has been deferred turning this study.

Gotta run, I have 200+ kilos of soap to make today and more tomorrow.

Stay well, think well!

Eric

Hi all…

Here we are three weeks after my last treatment and doing fairly well. The reason I say only fairly well, is that Leonie and I have noticed that consistantly, after each treatment at about this time, I seem to go into a mild depression that lasts about a week or so. Physically I am fine, although tired at the end of a work day. I have the energy levels needed, but I notice I really have to drive myself fairly hard during the day to get done what needs to be done. Motivation seems to be affected which is unusual for me and why I use the term mild depression. I am sleeping more as well which is another sign for me. I know things will return to normal shortly, but getting through these days is a bit tough sometimes.

One cannot expect to go through these treatments without effect, but it still catches me by surprise sometimes. The timing sucks though. We are getting ready for the Sydney GHA trade show the end of February and we have to have everything ready to ship within the next two weeks so there is no time for let up. As me Mum used to say “Poco a poco se cruce el mar.” “Little by little one crosses the sea”. We need to take one day at a time.

We’ve had beautiful warm weather, but except for last Sunday, haven’t had much time to enjoy it on the beach. I think that needs to change as well. Now that we are coming into February, business usually slows quite a bit, so if we can get this Sydney effort out of the way, we can get a little extra time off (ha ha!).

Take care, be careful… Eric

Hi everyone…

Just came back from Perth Friday arvo after completing Cycle 3 of the Lutetium-177 Study and my followup scans. Back to Perth tomorrow for the last scan of this cycle. Everything went quite well, although all four of us made the mistake of not taking the Temizepam (sedative) because we wanted to be alert enough to watch the opening day India-Australia Cricket test at the WACA (Western Australia Cricket Association). Turned out the broadcast was blacked out locally until 4:00pm so we ended up watching the Australian Tennis Open. Not a good decision me thinks. For the first time I was hit really hard with nausea about 20 second into the infusion, but they kept it a bay with tropisetron. Next time I will stick strickly to the protocol!!

Monday, after the density scan we met with Prof. Turner to review my case. December’s MRI of the chest showed no tumour activity and my lungs were declared essential free of any abnormalities. We did discover I have vascular disease in both my lower legs, but this is not related at all to the carcinoid, but more likely my smoking from age 18 to 44 (I quit in 1985). Something we will have to be a little careful of in the future. Because of some anomolies in the topography of my liver post-surgery, they have found it a little difficult to measure my liver tumors. There is a new MRI protocol that will be much more accurate in the future and may eliminate the need for the Octreotide scans post treatment. However, since we started with the scans we need to keep going with them.

Anyway, except for the nausea, which lasted about a minute, the infusion went fine and eventually we got out of the hospital 4:00 pmish.
the followup scans on Thursday and Friday were uneventful except I twigged my shoulder Thursday night and so had some pain killers Friday before the scan. Thanks to that I had a bit of a foggy day Friday afternoon and Leonie had to drive all the way home.

After Friday’s scan, Leonie and I met with Prof. Turner to review these latest scans as well as comparisons to the earlier ones. The scans confirmed that there is no activity in the chest or plural cavity, confirming the results of the MRI. The overall tumour load has not progressed since July and if anything may have decreased slightly (this is generally confirmed by the followup blood tests which show my CgA count dropping.

I would generally say this treatment cycle was a little more difficult than the previous ones which I think was caused by a) not taking the Temizepam on the treatment day, and b) having the morphine shot before the scans on Friday. This left me feeling fuzzy on Friday and a bit lethargic and flu-ish on Saturday. This morning (Sunday) I feel fine and I am looking forward to a more active day! In fact I will be going into work shortly for the morning.

Keep well everyone, be positive in everything you do, but mostly about yourself!

Eric

Hi Everyone,

Well it’s two down, two to go. This week I made a flying trip to Perth the day after Boxing Day for an abdominal MRI and a chest CT scan. Makes for a long day, six hours driving for 1-1/2 hrs at the hospital in Freo. This is the prequel to the 3rd treatment cycle. We are back in Freo on 14 January for the beginning of Cycle 3 of the Lutetium-177 treatment. My health continues to be fantastically good, although I have to admit the Pre-Christmas rush at the shop and factory did manage to wear me down a bit.

Leonie and I took a week off from working out at the gym. Just not enough time in the day for everything we had to do and the gym was on shortened hours most of the time as well. We were back with a vengence on Thursday, as I went directly to the gym on my way back from Perth and Leonie joined me later. It felt great to be back. We seriously missed it for that week. I guess one could say we’ve both kind of turned into gym junkies. Leonie even got me a Polar Heart Monitor for the gym so I could stay in the “zone”. These warm summer days also make the beach very appealing, which is where we spent a good part of Christmas day afternoon and the weekend as we both finally had it off together.

I continue to show little or no signs of carcinoid syndrome. They only gave me a 20mg shot of sandostatin at the conclusion of my treatment last month and that is all truely gone and absorbed by now. I’m not sure of the why so little symtoms have shown up in my case and I am waiting to talk to Dr. Turner on the 14th to see what the results of the treatment have been so far.

As we approach New Years Eve my very best wishes to all of you in the new year, may 2008 bring you your most hoped for wishes and also my wishes for your good health, peace and love.

Warmest Regards,

Eric (AKA SoapyFox)

Well, it is rather nice to say that there really has been no change since I wrote here a couple of weeks ago. I continue to have no significant carcinoid syndromes and plenty of energy, which is very fortunate given the season. I just completed the “quality of life” questionaire I fill out out about week 4-5 post treatment. I had to mark “None” or “No” to virtually every question indicating that thus far the treatment has not had any negative effects on my health or lifestyle. However, I am curious about the overall efficacy of the program thus far, and hopefully I’ll get a good update when in Freo for my next treatment in January.

This by far is our busiest time of the year, and I have been spending many hours a week on the factory floor seemingly wearing everyone else out. Certainly by the end of the week I am feeling a bit tired, but I recover quickly and with a good nights rest I am ready Saturday morning to get on with all the things that need to be done aund the home. One of this weekend’s project is to get the tree and Chrissy decos up. We are a bit late this year, but we’ve not had much spare time until this weekend!

We still are getting to the gym 3 times a week for our 2-hour workouts. Last night was a bit tough being the end of a very hard week, but with Leonie not letting me off the hook, we made it to the gym and I felt much better for it physically, emotionally and mentally. Really amazing…

Everyone Stay well and Season’s greetings to all…

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’)

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