Hello Everyone:
So much excitement to share …. seems like there was an infectious virus going around the family (perhaps a love bug?!!)….. Sean announced his engagement earlier this week to Irina while they were in Whistler. So, with both boys now engaged it sets the stage for a very interesting year. Sean’s conversations with Irina’s Father and Stepdad brought forth the overwhelming comment: “What took you so long!” They’ve known each other since university days and drawing close to 10 years now — on the other hand, it’s never too late either!!
There’ll be lots to celebrate when Gary and I get back to Toronto for Easter as Sean and Irina will be flying in from Vancouver for the week to spend with their respective families. Accompanying them will be Pablo, their Havanese puppy who is just too cute for words. I have attached a pic of the two and you will see that Pablo is certainly part of all the action.
My chemo session #2 went off without a hitch and with minimal side effects. We caught up with Martha, our tennis player, who was doing very well. Soon after, David Roy joined us and he was thrilled to meet Martha not only as we were able to exchange so much of our experiences, but for David to meet a 7 year pancreatic cancer survivor proved quite uplifting. As David mentioned, until the meeting, his awareness of this length of survival among Dr. I’s patients had been purely anecdotal.
David then filled us in on a very interesting symposium which he had been involved with during our respective recovery periods. For the past umpteen years, David has handled the financial portfolio of a Los Angeles philanthropist, who was referred to as Ray. With David’s pancreatic cancer diagnosis, Ray wanted to use some of his wealth to push forward progress in pancreatic cancer research in a more meaningful way. They decided to have Dr. I host a symposium at The Salk Institute in San Diego where they invited 18 of the top pancreatic cancer researchers in the United States to attend. While this philanthropic initiative might sound extremely propitious, the reality of the situatiion was that there were many huge egos to contend with and so the actual outcome of such an event was still unknown.
Fortunately, it would seem that egos were able to be properly stroked and managed and everyone was able to see the bigger picture and the need
for collaboration… all towards the common good of being able to discover an effective cure for this cancer, made all the more difficult, as pancreatic cancer cells have proven to be extremely resilient and stubborn to treatments so far. They contain a protein covering which the majority of chemo drugs have so far, had extreme difficulty in penetrating. Abraxane, which cousin Pat invented actually coats the chemo cells with albumin (as in egg white) and the Abraxane then attaches itself to the albumin. This together with the fact that the albumin not only seems to act as a penetrating agent but the Abraxane itself becomes many times more powerful in its application. So lucky for me at this time especially as Abraxane was originally invented for breast cancer and subsequently found to be effective for pancreatic. Let’s hope and pray that this symposium will ignite further progress and lead to successful treatment protocols.
A very interesting fact that came out of the symposium was the unilateral agreement by all of the researchers/scientists that the two major obstacles to their achieving a faster and more effective drug discovery for pancreatic cancer are 1) the large Pharmaceutical companies and 2) the Federal Drug Administration (FDA).
Just had chemo #3 yesterday and decided with the upcoming road trip, to combine the two updates. Note that my update #s coincide with the # of my treatments (easy for me to keep track this way).
The office was filled with the sign of Spring and to Gary’s great joy — many sweet items to delight the palate. Evidence of Sony the shi-tzu was strewn around the carpet — his toys seemed to indicate a hasty departure. We then discovered that Dr. I was having some meetings in the afternoon at UCLA and then dinner with cousin Pat so Sony had probably been picked up to be taken home.
Dr I was in a good mood. He was more open this time with telling us that he was extremely pleased with my progress. We had a discussion about the fact that I
had gained weight and was now at the point, where I would normally, start thinking about going on a diet! (lol). After a bit of joking around, I reassured him that rather than going on a diet I would just try and not gain any more weight. Patients in my situation usually have the opposite problem and having experienced one pancreatitis attack where for 5 days I could not eat or drink anything and lost 7 lbs, that tells me that I need a few “insurance” pounds. I think by just cutting out my dessert after dinner, which I started in order to gain weight, will do the trick.
Dr. I told me that my CA19-9 tumour marker bloodtest #s continue to reduce and that so far, I have reduced by close to 85% from the start. I suspect that all of these facts has made him a lot more openly optimistic with me. He advised that the goal is to bring the CA19-9 marker close to 0% and then to be able to manage the disease through regular bloodtests and scans. We will review the impact so far on the tumour itself when I have my next CT Scan in Toronto over the Easter period.
My white blood cell count was on the low side but I was still able to receive the full chemo combo. It seems that the additional frequent rinsing with bicarbonate of soda is helping immensely with controlling my mouth sores — none of which have surfaced so far. This enabled me to receive the full dosage of two of the drugs which generate the mouth sores. In prior #3 sessions, they would eliminate one of the drugs and either reduce the other or a combination. However, with the
low white cell count, I was given a shot of Neulasta, which stimulates the body’s ability to speed up the white cell production.
The only person in the chemo suite when Gary and I got there was Matt — our young survivor with the colourful tattooed arm. Matt was in again for a quick application of his antibiotic intravenously. Matt told us that they still have not been able to identify the infection — they suspect that the bacteria must be in his feed line and will know soon. This might require a new insertion unless the antibiotic solves the problem. I asked Matt how he was being impacted and he advised that at night he would have an extremely high fever which leaves him absolutely devoid of any energy the next day.
After Matt left there was no-one else around to join us in the chemo suite although there were a few patients still in the private rooms. Fay advised that they had cleared the afternoon to be lighter with Dr. I’s meetings at UCLA for the afternoon. Lisa, the Receptionist came through and offered us a Starbucks coffee. Poor, bored Gary, could not resist an excuse to visit the Reception area and came back with a large Starbucks and a large chocolate cookie simply oozing with something in the centre.
We’re just off for an early dinner with Marie & Rick (from Vegas) to keep up our usual routine of dinner after our sessions. My chemo of yesterday was brought forward to allow the extra day to check on side effects and to get us on the road by Thursday or Friday at the latest. Hopefully, Marie is feeling more positive and stronger as she had a session with her psych-oncologist earlier today. Perhaps some feedback for our next update.
I will be keeping my fingers crossed that we will be able to start our long trek home from LA to Toronto by Thursday, when we will have a pretty good idea as to whether the side effects are going to be well within the manageable range.
Sending you our warmest wishes for a Wonderful Easter Holiday. We share with you an appropriate African saying:
If you Want to Walk Quick, Walk Alone; If you Want to Walk Far, Walk Together.
It goes without saying that we are so grateful and blessed to have you all with us on this long walk. Our journey would not be the same without you!
Maureen and Gary