Eric’s Carcinoid Journey

Now that we are four weeks + post treatment, I find that I am back to some sort of normalcy for me. Which is very good considering the somewhat daunting tasks we have planned for this winter. All of June we will be in Turkey (for business) and Italy (for pleasure). July is Singapore for two weeks on business. August we’re in Melbourne on business and September we are off to Sydney on business again. Then comes the holiday rush after that!

Other than a low white cell and platelet count, all side effects of the treatments seem to have move on. We have been majorly busy getting a large shipment of soap and bath products off to Turkey these three past weeks, so I have hardly had time to think, let alone write anything. As potentially exhausting as that was, I stood up very well and had enough energy to spare to do a few things around the house that have been waiting for several months to get my attention. Emotionally, I think knowing all the treatments are behind me has certainly been a boost too. I will look with interest to the results of next November’s MRI scan, but my body says things are well under control right now.

We are back to the gym as well, but still not as often as we would like or as we need. Just too many demands for our time recently, but we are gradually increasing our presence there. It feels good and our intentions are good as well, we just have to make more time available for ourselves in this case.

My commitment to the study still requires five more weeks of blood samples, but that is a small burden compared to the benefits I have derived.

Bless you all, take care and keep well, …be back soon

Eric

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