Hello Everyone:
It does seem like quite a while since my last update and I’ve come to realize that going forward, my attempts to have the Update #’s coincide with my chemo treatments will be difficult so I will just continue to number the updates sequentially.
No doubt, you have all enjoyed the Winter Olympics while supporting your respective countries. Being on the west coast, we will not get to see the closing ceremonies until early this evening based on NBC’s scheduling. We have missed the broader coverage which the CBC and BBC tend to bring to their viewers as we’ve found once again that NBC tended to focus mostly on the US athletes and where the US were not in medal contention, we did not get to see much of the event at all. Knowing this and with his love for a good game of hockey, Gary decided to pull an “all nighter” and stayed awake to watch the Canada vs Sweden final hockey match for the gold medal which started at 3.30 am our time this morning (Canada won 3-0). For me, it has just been great to have had the Olympics to watch, especially this past week as the side effects from round 1 last Monday generated a tremendous amount of fatigue …. so when I was not sleeping, the only attractive option to me was to watch some TV. My energy level slowly returned Friday afternoon and I am now back on track ready to face round 2 tomorrow.
Before starting this cycle, we spent a very quiet and restful few weeks in Phoenix. Once again, the side effects after round 3 of the last cycle proved quite challenging but it certainly was nice to be able to rest up and recover in the peace and quiet of our home in Phoenix. For the first week, there was a cool spell; again all relative compared to what everyone else was having to suffer through this winter, and nothing that a nice comfortable blankie could not fix. Last cycle, my tumour marker #s had started climbing back up again so Dr. I switched me to the alternate regimen as he had done last June. This may be the reason for the excessive fatigue but more importantly, based on last year’s experience, the new regimen is likely to prove problematic for my platelets which in turn makes it difficult for us to plan ahead, since a low platelet count means deferred chemo sessions.
I have had some long conference calls with fellow patient Dave Roy, who these past few weeks has been extremely busy trying to secure more detailed “inside” knowledge on a few leading edge treatments and also one very interesting clinical trial which will start recruiting patients very shortly. This clinical trial falls into the immunotherapy category where the research team is using a combination of two drugs to boost the patient’s immune system to attack the cancer cells. Dave’s meeting with the lead scientist on this trial went extremely well and confirmed that we would both be candidates for this trial. We are hoping to receive some feedback from cousin Pat’s team on this trial as Dave was slightly concerned to be told that once a patient participates in a trial, the chances for a subsequent trial are not that great as the patient is then deemed to be “no longer pure”. We both found this difficult to understand especially if there is a decent gap e.g. 6 months, between trials.
In my last update, I mentioned The Lustgarten Foundation, which is a non-profit pancreatic cancer fundraising body. Dr. I is on the main committee and at their annual fundraiser in January, they actually generated $12 m (I had the #s wrong). The event itself raised close to $4 m and another organization (Stand Up for Cancer), which is heavily supported by Hollywood celebrities, stepped forward and donated a cheque for $8 m giving the Foundation $12 m in total. Dave Roy is the patient advocate on the Lustgarten Foundation and is presently in Philadelphia where the decision will be made as to which team of scientists will win an $8 m grant for pancreatic cancer research. Cousin Pat and his team are one of the 4 finalists — I was actually honoured to be asked by cousin Pat to be their patient advocate on the team application they have put forward. One of the other 4 finalists is Prof Fearon, the lead scientist from the recent Cambridge University breakthrough discovery. Each of the finalists has put forward a proposal outlining the details and status of their research in their quest to find a cure for pancreatic cancer. So much happening on this front; the final decision should be known within a week.
The drought in California continues with expected future increases in the cost of meat, fruit and vegetables. We are relieved to see that the flooding in England appears to have subsided and hopefully, not too much more of winter will be doled out to the mid and eastern States and Canada. From our walks through the neighbourhood, one would be hard pressed to think there is a drought. Lawns are still green and everything is blooming. The magnolias and early flowering trees and bushes have almost finished blooming. Azaleas, geraniums, daisies, birds of paradise and a host of flowering trees are all heralding the warmer temperatures. For our part, while we hardly used the dishwasher before, we have stopped using it altogether now. Being used to conserving water in Phoenix, it has not proven difficult for us to continue doing so while in LA.
Our Monday chemo days have brought forth a number of interesting new patients. Last week, we met Isolde (as I told her, it would be difficult to forget her name with my youngest son, being Tristan). Isolde relocated from Boca Raton, Florida with her husband after finding Dr. I through her daughter, Alexandra, who lives here. Treatment for her diagnosis in Florida was not going to be at the standard she needed – her tumour marker #s were the highest I had come across so far — in the hundreds of thousands!!. Once more, Dr. I has worked his magic and she is now down to the thousands and doing extremely well. Barbara was the other patient who was having her first chemo since her diagnosis. With her was her daughter (cannot recall her name) and her granddaughter, Christa. Gary was having a whale of a time with 7 ladies in the chemo suite and no competition. Needless to say, the sound levels were high and the time just flew by to the point where we arrived back home only to realize that we did not get a copy of my chemo order. With the possibility of a clinical trial getting closer to hand, I have started preparing my medical file so that it will be ready in an instant. I had to dust off my EXCEL spreadsheet capabilities (with some help from a friend) and have put together the history of my chemo drugs. The girls at the clinic will have ready for me all my tumour marker #s so that can be put on spreadsheet. Next will be assembling my CT Scans and then to check whether my biopsy slides are still available.
Great news — two of my brothers will visit us from Australia and join us for Sean and Irina’s wedding over Easter. As you know, the main wedding will be in Constanta (pron. Constanza) and is located almost directly opposite Sochi, just slightly north on the Black Sea.
With so much happening, we leave you with a Chinese proverb, shared with me by the cousin of a good friend, who has been battling cancer on and off for 25 years:
To know the road ahead, ask those coming back!
Sending you our warmest regards as you start slowly waving goodbye to a tough winter and gently begin ushering in an early and delightful Spring. As always, we would be remiss in not letting you know just how much your continued support and unconditional friendship mean to us. Thank you for being there.
With love and blessings.
Maureen and Gary