Vinny Has A Point

A Picture taken in Downtown Calgary today, April 29th.

Two Interesting Articles And Something Resembling a Plan

I found the two articles below of interest when I was reading the paper yesterday. Both are short and worth a read.

On the treatment front I have elected to take a 2 month break from chemo. It's been 9 or 10 months straight and I really feel like body and mind need some time to regroup. I have a scan scheduled for the last week of June and that should provide another update on how things are going. A good result then and I may take more time off from chemo, a bad result and it's back on the horse. I was originally planning to head back to Germany in June for more treatment there as well but that plan is also on the back burner for now. Penny and I have wrestled with this decision over the past week and I can assure you it does not come lightly. Now that the decision has been made a tremendous weight has been lifted. Apparently my body knows about this decision and has also decided to relax as my side effects from this latest round of chemo seem to be especially bad. My mouth is a war zone. I can't eat anything spicy or hot and even abrasive foods (croutons, crackers etc.) are painful to eat. I have to let my cereal soak for 10 minutes in the morning before I can bare the thought of trying to eat it. I also have some painful mouth sores for the first time. They suck. My drain also hurts and I'm tired.

On a more positive note, we have lots planned for my two months off. Treatment wise chemo may be off the table for now but I have a couple of other things I'm working on with anti-cancer properties. The first is a rigorous anti-cancer diet. That means no red meat, no refined grains, no refined sugars, and no dairy. We have been working at this for some months now and it's going well. Penny and I have developed a respectable repertoire of recipes that should make sticking to the plan a little easier. The kids are also on board (although they don't know it). For instance, last night they happily ate veggie burgers!

Another anti-cancer staple is exercise. I have always wanted to play hockey and, with the help of a few friends, joined up to play in the NCHL (non contact hockey league) here in Calgary. They have an introductory program for anyone who wants to play. It consists of 6 or 8 on ice teaching sessions that cover equipment, how to skate, puck handling, positional play, and other important aspects of the game. That is followed with 6 full-on games. It should be fun.

I'm really looking forward to these two months without chemo. I hope it all works out!

Man shares cancer miracle

BY STEVEN EDWARDS, POSTMEDIA NEWS APRIL 27, 2011

Cancer drug researchers gathered from around the world in New York will today hear for the first time from one of their biggest success stories -a Canadian businessman given just weeks to live before he began taking their experimental drug.

Once stricken with advanced kidney cancer, Wally Vogel is set to recount his incredible comeback after he began taking Sutent -a cancer-growth inhibitor that is considered one of the deadly disease's "breakthrough" drugs.

Several dozen Sutent researchers, clinicians and marketers with the drug company Pfizer Inc., which holds the licence to the treatment until 2021, will be listening as Vogel speaks at the Westin New York Hotel.

A U.S.-based biotechnology company founded in 1991 and later acquired by Pfizer discovered the drug, which the U.S. Food and Drug Administration approved in early 2006.

Deadliest cancers overlooked by charity

Study aims to help Canadians make informed donations

BY APRIL LIM, FOR POSTMEDIA NEWS APRIL 27, 2011

Canadians are overlooking the most deadly cancers when it comes to donating their money to charities, a new report suggests.

Charity Intelligence Canada, whose stated aim is to help Canadians make informed donation decisions, released its first Cancer in Canada report Tuesday.

The report shows funding for four of the deadliest cancers in Canada -pancreatic, stomach, lung and colorectal cancers -receive less than two per cent of cancer charity funding.

By contrast, breast cancer scoops up almost half (47 per cent) of cancer donations in Canada.

"There are a lot of cancer charities. Some of them are very small; some of them deal only in research on modest level; some don't do research at all," said Michael Wosnick, vice-president of research for the Canadian Cancer Society, which contributed data to the review.

"I think that lumping them all together is not necessarily casting the most illumination on this issue, but it's a start."

Cancer charities received an estimated $1.9 billion in 2009, including $1.3 billion from government sources and $614 million from voluntary donations.

Karen Greve Young, co-author of the report and cancer research analyst, studied the top 10 cancers that take the most years of life from Canadians -lung, colorectal, breast, pancreatic, non-Hodgkin lymphoma, brain, leukemia, prostate, ovarian and stomach -plus sarcoma, Terry Fox's cancer.

The data was complied from articles from medical journals and cancer agencies from Canada and the United States, including numbers from Statistics Canada, and information from the Canadian Cancer Society's annual report.

"One in four Canadians lose their lives to cancer, so it's a cause that is unfortunately, very, very important to Canadians.

"And our goal is to help Canadians make their donation dollars go further," said Greve Young.

With its 89 per cent five-year survival rate, breast cancer is one of cancer's success stories. It is also the most funded cancer -receiving 28 per cent of all Canadian cancer funding.

Greve Young said the truth is, those afflicted with the deadliest cancers aren't getting the chance to speak out for their cause and to ask the public for support -because they're not living long enough to do so.

"Breast, leukemia, childhood cancers ask loudly and frequently whereas other cancers like pancreatic, stomach, lung and colorectal don't have a voice," Greve Young said.

She said more Canadians die of pancreatic cancer in a year than there are Canadians living who have ever had pancreatic cancer.

"It strikes that quickly and is that lethal, so there literally isn't a voice for it," Greve Young said.

Cravings

It's been so long since I last posted. I did chemo on Wednesday and feel like crap. SO tired and lifeless. I find at this stage of chemo I get weird cravings as though I were pregnant. Sushi is a common one (I think it's all the salty soy sauce). I also crave pepperoni pizza and McChicken sandwiches (fat and salt?). This time my craving is for beer. Guinness to be exact. So, here I sit, watching hockey, feeling like crap but still managing to enjoy a Guinness. I guess it could be worse.

There And Back Again: A Second Adventure In Germany

Riding and shooting, originally uploaded by DPC Tutt.

We’re back safe and sound from our latest escapade to Germany. This trip was much shorted than the first with a little less sightseeing and a little more cancer-ass-kicking. We arrived there on the Sunday and got settled into our room at the clinic. I got a few infusions that night but Monday morning things really got going. I had local hyperthermia, more infusions, magnetic field therapy, blood tests and a massage before being hooked up to chemo (the 5FU infusion) overnight. In their infinite wisdom the clinic changed our booking for the whole body hyperthermia from Tuesday to Wednesday without telling us. This would have meant an extra day at the clinic which, given their recent increase in rates, would have cost us unnecessarily. So, pocket Penny went to work on the doctors and they eventually relented and changed us back to Tuesday.

After chemo and whole body hyperthermia Tuesday I was pretty tired and depressed and spent the night sleeping off the effects of chemo and sedation while getting infused with another round of 5FU (more chemo). On Wednesday we moved out of the hospital to a small hotel across the street. It was very close to the clinic and easy to get to. The owners were very pleasant and spoke very good English. They had spent 4 years in Newfoudland when he was posted there with the military so they were happy to have some Canadians around.

Once we moved out of the clinic things got better. I think it was hard on us coming straight to the clinic and basically starting chemo right away. To make things worse the weather was shite when we first arrived and there was a whole new set of patients there that we didn’t know. All of our old friends had gone home. There were a few familiar faces but language barriers had kept us from really getting to know them. Upon moving out of the clinic a number of things got better: We made new friends with the other patients and had lots of great meal-time conversations, the weather improved with temperatures in the mid 20’s and there was lots of sun and green grass and flowers. I also started to feel better right away and was able to get outside and enjoy the spring.

One of the best decisions we made this time was to rent some bicycles. There was a shop in town that used to rent them but it was closed every time we walked by. It turns out the shop went out of business and the bikes were now property of the central spa in town. They rented them out whenever people wanted them which, apparently, wasn’t very often. So we rented bikes for two days, put some air in the tires, packed a lunch and headed out. Luckily we had the ipad which has a GPS and great satellite maps so we were able to find lots of trails (they were everywhere!). The bikes were really nice cruisers and riding in the rolling hills around Bad Salzhausen was a pleasure. The first day we did a big tour of the some of the small towns nearby, stopping for coffee, food and water as needed. Through most of the fields and in the tows there are nice, wide paved trails which make for nice riding, avoiding the need to negotiate the hazardous, very narrow roads.

On our second day of riding we took our bikes on the train (so easy…) and went to Friedberg. My massage guy at the clinic said there was a castle there we could check out and that there were nice trails through the town. I think Friedberg has a population of about 25 000 and is located about 60km north of Frankfurt. When we got there we managed to find the castle thanks to its tower that sticks up above the surrounding countryside. It was an enchanting place but we couldn’t really garner any real information about its history since all the placards were in German. We could, however, read dates so we were able to figure out that the castle was built in 1340. We were also able to figure out that some family with 5 kids lived there in the early 1900s, but all the kids died in 1917. We weren’t sure why so we asked someone who told us they were killed because they knew people in Russia. My knowledge of Russian history isn’t great but I think that’s about the time the czars were overthrown?? I don’t know. It was interesting none the less. We climbed up to the top of the tower and peered about before returning to our bikes for a tour of the town. We rode around for an hour before settling in a park where families, old folks, and young punks were all hanging out together. One group of university aged kids was playing some kind of drinking game that resembled cricket without the bats. We stopped off for a beer at a cafe before returning home on the train.

Before leaving the clinic we had to pay the bill, which in the past was just a set daily charge but because I was now an outpatient I had to pay for all the individual treatments as outlined on a detailed statement. Everything was listed down to the cost of needles and saline solution. One of the funniest (and stupidest) charges was the doctor fees. We got billed for each minute we talked with a doctor. On one occasion Dr Herzog came outside when we were sitting on the patio and said that the weather was unseasonably warm for this time of year. We agreed and a short non-medical related conversation ensued at the end of which Penny asked him a question about my antibiotics, a question that should have been answered in our consultation with him the day before but he had forgotten to discuss it. His answer was short and the entire medically related portion of our conversation couldn’t have lasted more than 30 seconds but when we got the bill, sure enough there was a charge for that conversation! On the one hand I understand that he’s running a business but for a customer that has spent tens of thousands of Euros on treatment there, a 12 Euro charge for a casual conversation seems ridiculous. It made me glad I don’t have to see the bills for my treatment here in Canada!

On the day we were supposed to return to Canada we took the train to the airport from the clinic for 9 Euros each (the clinic wanted to charge us 80 Euros for a ride!) and met up with Heidi, our Air Canada queen of the skies. In the past flying standby had been easy but it was not to be on this occasion. All of the flights leaving Europe for Canada were oversold. That meant no seats for us on that day. The Frankfurt-Calgary, Frankfurt-Toronto and Frankfurt-Montreal flights were all full so we headed to an airport hotel for the night. We got up the next morning and headed back to the airport (after a marvelous buffet breakfast at the hotel that was INCLUDED in our stay) to try our luck again. We managed to get the last 3 seats on the Frankfurt-Toronto flight so we took them! We ended up in Toronto later that day sans checked bag. Unfortunately I had medication in there that needed to be refrigerated so not having the bag was a bit of a pain in the arse. Our bad luck continued in Toronto as all the flights leaving Toronto for the west were also oversold (I thought there was supposed to be a recession and no-one could afford to fly? Where are all theses people going?). We lucked out later in the day when 3 people missed their connecting flight to Calgary and we got their seats. We ended up at home that night after 23 hours of travel and were exhausted! Heidi had to travel even further, boarding a flight from Calgary to Vancouver and then from Vancouver to Victoria. In the end we all made it home, a little tired but ok overall. Thanks again to Heidi and John for facilitating our travel. We couldn’t have done it without you!

I’m not sure if/when another trip to Germany will happen. I was planning to take a break from treatments over the next few months but Dr Herzog seemed to think that might not be a good idea. His interpretation of my latest scan was that the growth was minimal, suggesting that what I’m doing is working. If that’s true then taking a break would be silly. On the other hand I’ve done 10 months straight of chemo. If you include my first round of chemo it makes for a total of 17 months of chemo in the past 2 years. I’m tired of chemo and want a break but when is the right time? There is no correct answer for that question by the way, I just need to do what I have to do. I’ll keep you posted.

Tutt-out.

I'm Just Saying...

In 1976 Montreal held the Winter Olympics, the next year the Canadiens won the President’s Trophy and went on to win the Stanley Cup… In 1988 Calgary held the Winter Olympics, the next year the Flames won the President’s Trophy and went on to win the Stanley Cup… In 2010 Vancouver held the Winter Olympics, the next year the Canucks won the President’s Trophy and… (thanks kevers)

No Updates

Sorry for the lack of news from here. We've been busy with treatments and the chemo has kept me pretty tired. The whole body hyperthermia went well again this time. We moved out of the clinic and into a hotel across the street. Since we don't need around the clock supervision it saves us lots of money to use the clinic on an outpatient basis only. The weather is great and the flowers are out. Shorts and t-shirts is the clothing of choice. We skyped with the kids and Sandy and Jim tonight and all seems to be going well there. We're looking forward to getting home and resuming normal life.

Spring in Calgary

Of course we have to plan to leave on the day that we get 30cm of fresh heavy wet Calgary sunshine. So far the roads are in rough shape which means the airport can't be any better. Hopefully our flight will make it out of here on time but the odds of that are poor. I guess the one redeeming aspect is that we won't have the kids with us which makes waiting out a delay much more bearable, bordering on enjoyable.

Sushi and CT results

Sushi monster, originally uploaded by DPC Tutt.

Tonight we had the last supper with the kids before we leave for Germany tomorrow. Andrew wanted sushi so we indulged him. He (and Carly) LOVE salmon sushi. Andrew eats it, wasabi and soy sauce included. He takes it off the rice first, folds it up, dips it in soy and then stuffs it in. It's hilarious to watch.

I picked up my CT results today. It was a little disappointing. The scan showed "subtle" growth of all of the nodules in my lungs. The largest one grew from 7x8mm to 9x10mm. There are 14 nodules in total in both lungs. On the plus side there are no new nodules and no other concerning features anywhere else.

I'm still not sure exactly how the resolution of the scan relates to my particular condition. With such small nodules I've been told before that it's hard to resolve meaningful measurements from such small features. If the scan is composed of 5mm slices it would be easy a) to fit small tumors between each 5mm slice and b) to slice the tumor in a different place from scan to scan. For instance if you have a 10mmx10mm nodule perhaps on scan 1 you slice it on one side resulting in an apparent size of 4mmx4mm. Then on a second, later CT scan, one of the 5mm slices happens to bisect the tumor perfectly in the middle resulting in an apparent size of 10mmx10mm. From those results one might conclude that the nodule has grown in the time between scans when in fact it actually stayed the same size. I suppose when you have 14 nodules and the all appear to grow from one scan to the next then that theory might not hold water. I wonder if it's possible to have a face to face meeting with a radiologist to discuss these things?