I recently underwent further radiation for a tumour growth on my lower spine nerves and am quite immobile now, resting most of the time in an at-home hospital bed. Unfortunately, due to my recent health complications, we are going to have to cancel the music event at our place this weekend. We apologize to everybody. We were hoping to have a great time with all our friends but it is not possible in my current condition.
For those of you who would like to see me over the next week or two for a short one-on-one visit or small group visit, please contact Kathryn by email at kconstantopoulos1970@gmail.com or by text at 416-779-0981 to arrange a day and time to visit. Feel free to bring instruments if you play them and if I feel well enough I will join you and if not, you can play for me.
Wednesday, 26 September 2018
Wednesday, 12 September 2018
Uncertainty
Last Thursday, September 6, 2018 was a big day. Kathryn and I made that familiar trip to the Juravinski Cancer Centre in Hamilton, roughly an hour long drive from our home in Guelph. On the way there, we wondered what state we would be in on the way home. Happy, sad? Would it be good news? Another miracle? Would it be bad news? A nightmare?
We were hoping that Dr. H., my clinical trial oncologist at the Juravinski Cancer Centre, had some more tricks up his sleeve and able to perform some more magic as he had done previously on the recent Triton2/Rucaparib clinical trial.
Unfortunately this was not to be. No miracles, no magic. I guess “sad” would describe the state we were in on our drive home.
I am now out of the clinical trial that I've been party of since March, and at this time, there are no clinical trials that Dr. H. and his team are aware of that I might be eligible for. That being said, we are still always on the lookout for one that may be suited for me.
We wonder if there is still a thread of hope for clinical trials.
Today, September 12, 2018, we had an appointment with the radiologist at Grand River Cancer Centre to address the pain I've been having in my legs and back/spine over the past few weeks. At times this pain is unbearable so we are hoping that radiation will help and we’re now in the process of scheduling that in. It will likely start next week.
Dr. H. has also proposed a new hormonal therapy drug called Xtandi which has a chance of lowering the chance of prostate cancer progression. Xtandi is a nonsteroidal antiandrogen medication which is used in the treatment of prostate cancer. It has been studied in men with advanced prostate cancer that no longer respond to treatment.
We wonder if there is still a thread of hope for more success with hormonal therapy treatments.
That all being said, the prognosis that we received last Thursday, September 6 was not good and was unfortunately measured in mere months. Sometimes doctors can be brutally honest and personally I prefer this approach. Yes I must try to be strong and hopeful but the facts, charts, stats, predictions are reality and at some point need to be accepted. I still however believe in miracles, hope and prayer.
Over the next few weeks, we'll have to see how the radiation treatments have an impact on my pain, and hope that the new drug Xtandi helps to at least lower my PSA level which now continues to climb higher. Also, I just received an oxygen machine which is helping me to breathe better as my oxygen levels have been fairly low lately below normal levels.
As for some good news, we have decided to set a date and new venue for the “Music Jam Afternoon”, an afternoon in which I hope friends and family can just drop in get caught up and play music or just watch and chat.
We will provide the instruments and have everything set up on our backyard deck, including electric piano/keyboards, electric and acoustic guitars, bass, drums, ukulele, violins, harmonica, miscellaneous percussion, as well as mics and amplifiers.
The “Music Jam Afternoon” will be held on our Backyard Deck tentatively on Saturday, September 29 from 3:00pm to 7:00pm. It is meant to be a "drop in"-type event in which you can feel free to come at any time and stay for as long as you like. Bring your own instruments if you like. Stay posted for more details to follow, please contact us for address and RSVP myself or Kat if possible . . .
It will be a “BYOL” event - “Bring Your Own Lawn Chair”.
We will provide some food such as perhaps ordering a few pizzas and munchies as well.
Hope to see you at the “Music Jam Afternoon” event and if you have any questions about it please let us know.
As always, your thoughts and prayers are much appreciated!
We were hoping that Dr. H., my clinical trial oncologist at the Juravinski Cancer Centre, had some more tricks up his sleeve and able to perform some more magic as he had done previously on the recent Triton2/Rucaparib clinical trial.
Unfortunately this was not to be. No miracles, no magic. I guess “sad” would describe the state we were in on our drive home.
I am now out of the clinical trial that I've been party of since March, and at this time, there are no clinical trials that Dr. H. and his team are aware of that I might be eligible for. That being said, we are still always on the lookout for one that may be suited for me.
We wonder if there is still a thread of hope for clinical trials.
Today, September 12, 2018, we had an appointment with the radiologist at Grand River Cancer Centre to address the pain I've been having in my legs and back/spine over the past few weeks. At times this pain is unbearable so we are hoping that radiation will help and we’re now in the process of scheduling that in. It will likely start next week.
Dr. H. has also proposed a new hormonal therapy drug called Xtandi which has a chance of lowering the chance of prostate cancer progression. Xtandi is a nonsteroidal antiandrogen medication which is used in the treatment of prostate cancer. It has been studied in men with advanced prostate cancer that no longer respond to treatment.
We wonder if there is still a thread of hope for more success with hormonal therapy treatments.
That all being said, the prognosis that we received last Thursday, September 6 was not good and was unfortunately measured in mere months. Sometimes doctors can be brutally honest and personally I prefer this approach. Yes I must try to be strong and hopeful but the facts, charts, stats, predictions are reality and at some point need to be accepted. I still however believe in miracles, hope and prayer.
Over the next few weeks, we'll have to see how the radiation treatments have an impact on my pain, and hope that the new drug Xtandi helps to at least lower my PSA level which now continues to climb higher. Also, I just received an oxygen machine which is helping me to breathe better as my oxygen levels have been fairly low lately below normal levels.
As for some good news, we have decided to set a date and new venue for the “Music Jam Afternoon”, an afternoon in which I hope friends and family can just drop in get caught up and play music or just watch and chat.
We will provide the instruments and have everything set up on our backyard deck, including electric piano/keyboards, electric and acoustic guitars, bass, drums, ukulele, violins, harmonica, miscellaneous percussion, as well as mics and amplifiers.
The “Music Jam Afternoon” will be held on our Backyard Deck tentatively on Saturday, September 29 from 3:00pm to 7:00pm. It is meant to be a "drop in"-type event in which you can feel free to come at any time and stay for as long as you like. Bring your own instruments if you like. Stay posted for more details to follow, please contact us for address and RSVP myself or Kat if possible . . .
It will be a “BYOL” event - “Bring Your Own Lawn Chair”.
We will provide some food such as perhaps ordering a few pizzas and munchies as well.
Hope to see you at the “Music Jam Afternoon” event and if you have any questions about it please let us know.
As always, your thoughts and prayers are much appreciated!
New venue for the “Music Jam Afternoon” event - Our Backyard Deck.
Monday, 13 August 2018
It’s OK
It was a week of pretty bad news, but it's OK . . .
My PSA levels continue to climb once again as has been the pattern, doubling every few weeks, and I am now officially out of the Triton2/Rucaparib clinical trial that I've been in since March at Hamilton's Juravinski Cancer Centre. It was effective for a few months but apparently has now run its course as my aggressive cancer has outsmarted it as it has managed to do with each cancer treatment we’ve thrown its way so far.
Unfortunately I’ve also been rejected from the new immunotherapy clinical trial which we had high hopes for and seemed to be my next viable option, but it's OK.
I've just completed five of five radiation treatments at the Grand River Cancer Centre to alleviate my recent leg/femur pain, which based on the latest scans are more active tumours, and as a result caused our cottage vacation last week to be cut short. The spots on my liver are now bigger and have become significant and a new area of concern. These latest scans proved to be all bad news.
But that's OK.
I woke up this morning, and I was happy. I look at my family, and I feel happy. I can't describe how proud I am of Kat and the kids, they have transformed me into a complete and happy human being. I have no complaints. I am a lucky man.
We are off to the cottage for our annual family cottage vacation this weekend and back on labour day.
The next step for me would then be a very important meeting with my clinical trial oncologist to find out what's next on Thursday, September 6. This will be a BIG day! By then, we hope that he and his oncology team will have a plan in place with new options that can help me. We hope that he has some more tricks up his sleeve. I have faith in Dr. H.
In the meantime, I am going to enjoy every single minute of every single day. I can't wait for this weekend and to spend an entire two weeks with my family at the cottage out in Prince Edward County, not worrying and not thinking too much. It's going to be awesome. I wish you and your family a great summer and will be back with more news in September.
My PSA levels continue to climb once again as has been the pattern, doubling every few weeks, and I am now officially out of the Triton2/Rucaparib clinical trial that I've been in since March at Hamilton's Juravinski Cancer Centre. It was effective for a few months but apparently has now run its course as my aggressive cancer has outsmarted it as it has managed to do with each cancer treatment we’ve thrown its way so far.
Unfortunately I’ve also been rejected from the new immunotherapy clinical trial which we had high hopes for and seemed to be my next viable option, but it's OK.
I've just completed five of five radiation treatments at the Grand River Cancer Centre to alleviate my recent leg/femur pain, which based on the latest scans are more active tumours, and as a result caused our cottage vacation last week to be cut short. The spots on my liver are now bigger and have become significant and a new area of concern. These latest scans proved to be all bad news.
But that's OK.
I woke up this morning, and I was happy. I look at my family, and I feel happy. I can't describe how proud I am of Kat and the kids, they have transformed me into a complete and happy human being. I have no complaints. I am a lucky man.
We are off to the cottage for our annual family cottage vacation this weekend and back on labour day.
The next step for me would then be a very important meeting with my clinical trial oncologist to find out what's next on Thursday, September 6. This will be a BIG day! By then, we hope that he and his oncology team will have a plan in place with new options that can help me. We hope that he has some more tricks up his sleeve. I have faith in Dr. H.
In the meantime, I am going to enjoy every single minute of every single day. I can't wait for this weekend and to spend an entire two weeks with my family at the cottage out in Prince Edward County, not worrying and not thinking too much. It's going to be awesome. I wish you and your family a great summer and will be back with more news in September.
The inaugural flight of our latest Drone, the DJI Spark filming in Full HD video.
Pilot: Shayne Gal.
Pilot: Shayne Gal.
Tuesday, 31 July 2018
The roller coaster ride continues
I know it’s been a long time since my last blog update, and I apologize, but once again I suppose I’ve had enough negatives on this ride that kept me from the keyboard.
There have been many times in my life when I felt down and depressed, none of which can quite compare to how I've been feeling over the past few months. I think I can now better understand and relate to those suffering from depression or mental issues. Feeling useless and sleeping for most of the day is not fun. Trying to force yourself to get up and motivate yourself is hard and extremely frustrating.
On one hand, I should be happy and feel appreciative, and I do. After all, I've been accepted into this exclusive clinical trial at the Juravinski Cancer Centre which initially showed promise. On the other hand, it appears likely that this new experimental drug is just one more drug I am currently on which causes fatigue and depression as a side effect, and also has its limits and could very likely now be near the end of its course for me.
Most of the meds that I am currently on list fatigue as a side effect, and when all combined, results in my recent dilemma: depression - not being able to do much and wanting to sleep the day away. In recent weeks my doctor decided to try and reduce some of the drugs contributing to my fatigue. It seems to have worked and I'm feeling much better these days. I was able to avoid antidepressants (the other option) which I'm happy about. The last thing I want at this point is yet another drug, as I’m currently taking more than a dozen and require one of those pill boxes to help keep track of them all.
Our family had a fantastic trip out west for our annual “Canada Day Adventure”. Every Canada Day we visit a different part of our amazing and beautiful country. Last year we went east to Nova Scotia and previous to that, Alberta and Prince Edward Island. This year we started in Whistler, B.C. and explored beautiful Vancouver Island. We ended our 2 week trip in Victoria B. C. and then spectacular Vancouver. Beautiful, stunning - that's all I can say and we lucked out on the weather as well it was really nice.
I was feeling good the whole time except for a rough time on the plane ride to Vancouver and some issues upon arriving. Luckily that did not last very long and I felt really good throughout our trip. When we returned back home I was feeling good but now leg pain (same leg where I had my recent hip surgery) has once again taken over and put a wrench into my plans of having some fun and pain-free summer days.
Unfortunately last week we received more bad news. When I started the clinical trial a few months ago, my PSA came down from over 100 to 2.5 at one point, an amazing drop (1 through 4 is normal and acceptable). Unfortunately, it has steadily gone up in the past few weeks, once again doubling each few weeks which seems to be the pattern. In the past 18 months, we’ve seen this number drop and increase so many times that I’ve almost grown used to it. It's now on it's way back up again.
The roller coaster ride continues . . .
Last week I had more tests done (CT Scan, Bone Scan, etc) and it appears that there is in fact more cancer activity. I’ve been called in to urgently see my clinical trial oncologist this Thursday and at that time will know better my status and new options (ie: immunotherapy was mentioned) based on these results.
Back in November of 2016, my oncologist at the Grand River hospital in Kitchener gave me a prognosis of 18 months to live. She based it on the fact that the cancer had spread (metastasized) to my back and spine and at that time we did not know where the cancer originated. In fact, the oncologist believed it was Gastro-Intestinal (GI) which would have been a worse prognosis than that it actually turned out to be (prostate). Nevertheless, that 18-month guestimate has remained in my mind ever since she gave me that news, and I’m well aware that the 18-month point has just passed as of May, 2018. In my mind, I keep thinking now that every single day, every single moment that passes after May 2018 is bonus time for me, so I really need to enjoy each minute of each day. This is what I’m trying to do!
Despite the pain and discomfort, I am trying to wake up at a reasonable time each morning and make the most of each day. I have my mountain bike with e-Bike kit working once again, and am trying to ride my bike every day although that is not always possible. I also just set up all my musical audio recording equipment downstairs in our music/jam room, and am having great fun with this once again. Looking forward to having friends come over to do some recording, and also hoping to record the kids as well and their bands.
The kids are doing great. They are enjoying their various camps. Shayne is currently in a 2-week long sleepover camp doing fun things like kayaking, sailing, and swimming. Both kids got their junior black belts in June and we are so proud of them for that amazing achievement. Shayne finished in second place in the final run of the 4-month black belt program, finishing ahead of all contestants including the adults. Incredible! Anika was voted “Sealy Karate Student of the Year”, the youngest to ever achieve this award, and received a beautiful plaque in recognition of this amazing achievement. I can’t describe how surprised we were at the Black Belt Spectacular on June 8 when master Shihan Kevin Sealy called out her name, and described her as his “new hero” regardless of her age and talked about how young people can inspire us (not gonna lie, I cried my eyes out while giving her a standing ovation!). Congratulations Anika my beautiful amazing girl! What would I do without my family, they make me happy beyond words!
That’s all the news I have for now. As mentioned I have a very important appointment this Thursday with my oncologist at the Juravinski Cancer Centre in Hamilton, and at that time, will know more about the results of my Cat Scan, Bone Scan, and recent blood work, and hopefully find the culprit of this new leg pain I have been experiencing. In the meantime, I’m just trying to deal with whatever comes my way and hoping that things will once again turn upwards.
Dear family and friends, thanks again for all your kind words of hope and encouragement it means so much to me knowing that I have so may great friends who really care. Also I can't say enough about how much Kat has helped and supported me over the past 18 months. In addition to helping me and taking me to all my appointments, she even keeps track all of my meds and pill box!! Unfortunately she has had more chores to do here at home as I haven't been able to do everything that I used to do, but she has done an incredible job with the yard bringing dozens of bags of yard scraps to the dump all on her own and re-designing parts of it. The yard has never looked so good I must admit!!
I hope that you are all having a great summer and I will keep you posted on my latest medical news, as well as the new date for the music night which I hope will be in September or October at Manhattan's on Gordon Street in Guelph.
Happy Summer everyone!!
There have been many times in my life when I felt down and depressed, none of which can quite compare to how I've been feeling over the past few months. I think I can now better understand and relate to those suffering from depression or mental issues. Feeling useless and sleeping for most of the day is not fun. Trying to force yourself to get up and motivate yourself is hard and extremely frustrating.
On one hand, I should be happy and feel appreciative, and I do. After all, I've been accepted into this exclusive clinical trial at the Juravinski Cancer Centre which initially showed promise. On the other hand, it appears likely that this new experimental drug is just one more drug I am currently on which causes fatigue and depression as a side effect, and also has its limits and could very likely now be near the end of its course for me.
Most of the meds that I am currently on list fatigue as a side effect, and when all combined, results in my recent dilemma: depression - not being able to do much and wanting to sleep the day away. In recent weeks my doctor decided to try and reduce some of the drugs contributing to my fatigue. It seems to have worked and I'm feeling much better these days. I was able to avoid antidepressants (the other option) which I'm happy about. The last thing I want at this point is yet another drug, as I’m currently taking more than a dozen and require one of those pill boxes to help keep track of them all.
Our family had a fantastic trip out west for our annual “Canada Day Adventure”. Every Canada Day we visit a different part of our amazing and beautiful country. Last year we went east to Nova Scotia and previous to that, Alberta and Prince Edward Island. This year we started in Whistler, B.C. and explored beautiful Vancouver Island. We ended our 2 week trip in Victoria B. C. and then spectacular Vancouver. Beautiful, stunning - that's all I can say and we lucked out on the weather as well it was really nice.
I was feeling good the whole time except for a rough time on the plane ride to Vancouver and some issues upon arriving. Luckily that did not last very long and I felt really good throughout our trip. When we returned back home I was feeling good but now leg pain (same leg where I had my recent hip surgery) has once again taken over and put a wrench into my plans of having some fun and pain-free summer days.
Unfortunately last week we received more bad news. When I started the clinical trial a few months ago, my PSA came down from over 100 to 2.5 at one point, an amazing drop (1 through 4 is normal and acceptable). Unfortunately, it has steadily gone up in the past few weeks, once again doubling each few weeks which seems to be the pattern. In the past 18 months, we’ve seen this number drop and increase so many times that I’ve almost grown used to it. It's now on it's way back up again.
The roller coaster ride continues . . .
Last week I had more tests done (CT Scan, Bone Scan, etc) and it appears that there is in fact more cancer activity. I’ve been called in to urgently see my clinical trial oncologist this Thursday and at that time will know better my status and new options (ie: immunotherapy was mentioned) based on these results.
Back in November of 2016, my oncologist at the Grand River hospital in Kitchener gave me a prognosis of 18 months to live. She based it on the fact that the cancer had spread (metastasized) to my back and spine and at that time we did not know where the cancer originated. In fact, the oncologist believed it was Gastro-Intestinal (GI) which would have been a worse prognosis than that it actually turned out to be (prostate). Nevertheless, that 18-month guestimate has remained in my mind ever since she gave me that news, and I’m well aware that the 18-month point has just passed as of May, 2018. In my mind, I keep thinking now that every single day, every single moment that passes after May 2018 is bonus time for me, so I really need to enjoy each minute of each day. This is what I’m trying to do!
Despite the pain and discomfort, I am trying to wake up at a reasonable time each morning and make the most of each day. I have my mountain bike with e-Bike kit working once again, and am trying to ride my bike every day although that is not always possible. I also just set up all my musical audio recording equipment downstairs in our music/jam room, and am having great fun with this once again. Looking forward to having friends come over to do some recording, and also hoping to record the kids as well and their bands.
The kids are doing great. They are enjoying their various camps. Shayne is currently in a 2-week long sleepover camp doing fun things like kayaking, sailing, and swimming. Both kids got their junior black belts in June and we are so proud of them for that amazing achievement. Shayne finished in second place in the final run of the 4-month black belt program, finishing ahead of all contestants including the adults. Incredible! Anika was voted “Sealy Karate Student of the Year”, the youngest to ever achieve this award, and received a beautiful plaque in recognition of this amazing achievement. I can’t describe how surprised we were at the Black Belt Spectacular on June 8 when master Shihan Kevin Sealy called out her name, and described her as his “new hero” regardless of her age and talked about how young people can inspire us (not gonna lie, I cried my eyes out while giving her a standing ovation!). Congratulations Anika my beautiful amazing girl! What would I do without my family, they make me happy beyond words!
That’s all the news I have for now. As mentioned I have a very important appointment this Thursday with my oncologist at the Juravinski Cancer Centre in Hamilton, and at that time, will know more about the results of my Cat Scan, Bone Scan, and recent blood work, and hopefully find the culprit of this new leg pain I have been experiencing. In the meantime, I’m just trying to deal with whatever comes my way and hoping that things will once again turn upwards.
Dear family and friends, thanks again for all your kind words of hope and encouragement it means so much to me knowing that I have so may great friends who really care. Also I can't say enough about how much Kat has helped and supported me over the past 18 months. In addition to helping me and taking me to all my appointments, she even keeps track all of my meds and pill box!! Unfortunately she has had more chores to do here at home as I haven't been able to do everything that I used to do, but she has done an incredible job with the yard bringing dozens of bags of yard scraps to the dump all on her own and re-designing parts of it. The yard has never looked so good I must admit!!
I hope that you are all having a great summer and I will keep you posted on my latest medical news, as well as the new date for the music night which I hope will be in September or October at Manhattan's on Gordon Street in Guelph.
Happy Summer everyone!!
Top of Whistler Mountain about to take the Peak2Peak gondola to Blackcomb mountain.
Anika proudly holding her award for "Sealy Karate Student of the Year".
Thursday, 3 May 2018
Reasons for optimism
Over the past few weeks things have been going well and I’m finally starting to receive much needed good news on a consistent basis. I am now back into the clinical trial at the Juravinski Cancer Centre in Hamilton and continue my recovery from the unexpected hip surgery a few weeks back. My PSA continues to go down and is now at a respectable and unbelievable 4.8 (down from 70+ since I started this clinical trial). This is great news and it seems that this new medication is working by keeping the cancer under control (PSA of 1 to 4 is normal). The big question is how long will it continue to help me? That remains to be seen, and all we can do is remain positive and hope for the best.
The clinical trial is called TRITON2 and consists of the study of the new experimental drug Rucaparib, meant for patients with metastatic castration-resistant prostate cancer. Rucaparib belongs to a class of anti-cancer drugs know as PARP inhibitors and is taken in pill form daily. Research has shown that PARP inhibitors can cause cancer cells to stop growing. The goal of the study is to determine whether Rucaparib is a treatment option in patients with prostate cancer, and who have mutations in DNA repair genes such as BRCA or ATM. In order to qualify for this study, a number of tests were required and the genetic requirements had to match. Approximately 160 patients with metastatic castration-resistant prostate cancer will participate in this particular study at about 125 centers worldwide, and I happen to be one of those lucky ones. My oncologist at the Juravinski Cancer Centre is extremely optimistic about this drug and clinical trial, and based on our very early results so far, I am optimistic as well.
I'm still moving (walking) really slowly since surgery but the good news is that I've ditched both the standard and wheeled walkers that I depended on initially and am now back to the cane once again. Yesterday was the first day since my hip surgery that I ventured out on my own with a trip to the mall via cab. It was a great feeling just to get out. One of my goals now is to be able to get on that bike (it’s a standard Trek with a motor kit attached), but that may not happen as quickly as I would like it to.
I’m getting a lot of help from the CCAC/LHIN home community care group (http://healthcareathome.ca/). They have provided me with a doctor, nurses who visit my home several times per week, as well as a physiotherapist and social worker. They have been a great help for me and their services are much appreciated.
Having these mobility issues and depending so much on others has really opened my eyes and helped me to appreciate those basic things in life that we take for granted - like walking. I feel really bad for Kathryn sometimes as she has spent so much time and energy helping me and driving me around, not to mention all the additional chores around the house that she has taken on. We've also started to get the kids helping out with chores more so it's been a team effort.
I have to admit that I've been a bit down over the past few weeks. I’ve been really tired and am sleeping quite a bit and feeling lazy. I'm really looking forward to walking normally once again and perhaps being able to ride my bike and have my freedom back. Right now I've been spending way too much time at home and inside the house. Hopefully with the weather improving along with my recovery from surgery I’ll be able to get out more and enjoy that sunshine and blue sky.
I’m really enjoying my new Taylor acoustic guitar and looking forward to trying out Shayne’s (Dad’s???) new Spark DJI drone with HD video, which is currently still in the box. It looks like the nice weather is coming so we’ll soon be flying this new toy at a park nearby.
Also, I plan to reschedule that Manhattan’s music night which I was forced to postpone as a result of my hip surgery. As soon as I’m a bit more mobile we’ll set a new date.
Thanks once again for the visits, food deliveries, and your thoughts and prayers. As always, it's much appreciated! A recent box of cupcakes (Tracey!) disappeared quite quickly in our house! I blinked and it was gone!
The clinical trial is called TRITON2 and consists of the study of the new experimental drug Rucaparib, meant for patients with metastatic castration-resistant prostate cancer. Rucaparib belongs to a class of anti-cancer drugs know as PARP inhibitors and is taken in pill form daily. Research has shown that PARP inhibitors can cause cancer cells to stop growing. The goal of the study is to determine whether Rucaparib is a treatment option in patients with prostate cancer, and who have mutations in DNA repair genes such as BRCA or ATM. In order to qualify for this study, a number of tests were required and the genetic requirements had to match. Approximately 160 patients with metastatic castration-resistant prostate cancer will participate in this particular study at about 125 centers worldwide, and I happen to be one of those lucky ones. My oncologist at the Juravinski Cancer Centre is extremely optimistic about this drug and clinical trial, and based on our very early results so far, I am optimistic as well.
I'm still moving (walking) really slowly since surgery but the good news is that I've ditched both the standard and wheeled walkers that I depended on initially and am now back to the cane once again. Yesterday was the first day since my hip surgery that I ventured out on my own with a trip to the mall via cab. It was a great feeling just to get out. One of my goals now is to be able to get on that bike (it’s a standard Trek with a motor kit attached), but that may not happen as quickly as I would like it to.
I’m getting a lot of help from the CCAC/LHIN home community care group (http://healthcareathome.ca/). They have provided me with a doctor, nurses who visit my home several times per week, as well as a physiotherapist and social worker. They have been a great help for me and their services are much appreciated.
Having these mobility issues and depending so much on others has really opened my eyes and helped me to appreciate those basic things in life that we take for granted - like walking. I feel really bad for Kathryn sometimes as she has spent so much time and energy helping me and driving me around, not to mention all the additional chores around the house that she has taken on. We've also started to get the kids helping out with chores more so it's been a team effort.
I have to admit that I've been a bit down over the past few weeks. I’ve been really tired and am sleeping quite a bit and feeling lazy. I'm really looking forward to walking normally once again and perhaps being able to ride my bike and have my freedom back. Right now I've been spending way too much time at home and inside the house. Hopefully with the weather improving along with my recovery from surgery I’ll be able to get out more and enjoy that sunshine and blue sky.
I’m really enjoying my new Taylor acoustic guitar and looking forward to trying out Shayne’s (Dad’s???) new Spark DJI drone with HD video, which is currently still in the box. It looks like the nice weather is coming so we’ll soon be flying this new toy at a park nearby.
Also, I plan to reschedule that Manhattan’s music night which I was forced to postpone as a result of my hip surgery. As soon as I’m a bit more mobile we’ll set a new date.
Thanks once again for the visits, food deliveries, and your thoughts and prayers. As always, it's much appreciated! A recent box of cupcakes (Tracey!) disappeared quite quickly in our house! I blinked and it was gone!
Monday, 19 March 2018
Hip fracture setback
For the past several weeks my general mobility and pain levels deteriorated to the point where I had to be transported to Guelph General Hospital via ambulance. No longer able to walk, I required immediate surgery to correct a hip fracture, a break in the upper quarter of the femur (thigh bone) caused by my aggressive cancer. This hip pinning procedure required special screws to be placed down and through my leg to hold things in the correct position. Today I am currently recovering from surgery at Guelph General Hospital and undergoing daily physio/rehab to get back on my feet again.
Just days before I was placed into surgery to correct the hip fracture, I had started the new clinical trial at the Juravinski Cancer Centre in Hamilton. At this point as I recover from the hip surgery at Guelph General, the clinical trial has been put on hold but we have been assured that it will continue upon my recovery which will hopefully be some time over the next week or so.
I admit it's been a huge disappointment having to now deal with this hip issue and once again landing in hospital.
I continue to be hopeful that once I recover from my surgery that I'll be back on the clinical trial which has given me high hopes based on the information that the lead study oncologist has provided to us and overall success that the trial has had in cases like mine. Let's once again examine how lucky I am: so far I am the only candidate out of 10 selected and approved for this particular new trial study in this region. Yes, one of 10!
There are still many reasons to remain positive and hopeful despite these recent setbacks. Over the next few weeks I expect to fully recover from the hip surgery, get my mobility back and begin walking (and maybe even running) normally again, and get back on track with the clinical trial to take on this cancer.
On another note, it looks like we are going to have to postpone the Manhattan's Music Event which was scheduled for next Sunday, March 25 from 1pm - 5pm at Manhattan's Guelph 951 Gordon Street. Thanks very much for your patience and understanding!
I will keep you all posted on the new music event date once I'm out of the hospital and recovered.
Anika and I with our new Taylor guitars
Sunday, 4 February 2018
Clinical trial and renewed hope
It’s been a rough 6 weeks since I began chemotherapy round #2 in mid November. I’m not going to lie, it’s been a terrible experience filled with extreme fatigue, poor mobility, leg and back pain, and stomach issues. It’s been impossible to plan anything because one day I’m feeling OK, but then the next I’m back in bed again unable to function. I’ve cancelled quite a few events and meetings, even missed my kids' hockey games - the worst example being missing the Toronto Maple Leafs vs New York Islanders hockey game on January 31 at the Air Canada Centre which Shayne and I were supposed to attend. I got the tickets at a Bracelet of Hope event silent auction, and after the intense bidding battle with a tough competitor that went right down to the wire, was so happy to get these tickets. We really looked forward so much to the game. It was heartbreaking that we missed it but the way I look at it now, it ended up being a donation to a great cause (http://www.braceletofhope.ca/).
I just watched Tom Brady of the New England Patriots miss his "Hail Mary" pass in the last seconds of the Super Bowl, and hoping that my new "Hail Mary" in the form of this clinical trial at the Juravinski Cancer Centre will have better results.
I’ve had some great news and we’ve begun the process of having me participate in this fresh new prostate cancer clinical trial at the Juravinski Cancer Centre in Hamilton. I may have to do one more chemo session but I’m inclined to decline this final session and just wait for the clinical trial to begin, which would be a few weeks away. In any case, it now appears that both chemotherapy rounds have not helped as my PSA continues to go up. I still need to have some tests done and get a few things confirmed and genetic details matched up, but at this point, I am hoping that sometime in March/April I will start the clinical trial, which the oncologist who is running it is extremely optimistic about and believes will give me up to a 70% chance of good results based on what we know so far. For the clinical trial, the drugs are in the form of pills and do not have the typical negative side effects that chemotherapy has. So, to be in the position of getting into this trial that has minimal side effects and has a great chance of helping me is fantastic news for me and another clear example of how incredibly lucky I am. I still need to pass through a couple of hurdles for it to become reality, but keeping my fingers crossed.
On another happy note, we now have a date confirmed for the Manhattan’s Music Party on Sunday, March 25 at Manhattan’s Pizza, Bistro, and Music Club in Guelph at 951 Gordon Street. It's going to be an afternoon open-mic/jam type event something like 1:00pm - 5:00pm (to be confirmed) and drop-in type thing. You can get great food and drinks there and sign up if you want to get up and sing or play. Instruments will be provided.
I will keep you posted with news on the event on Facebook as well as here on this web page:
http://www.twoinsix.com/
IMPORTANT: Please make sure you check this above link before coming in case I have to cancel last-minute, which is a possibility based on my health and what I’ve experienced in the last few weeks.
I apologize to everyone whom I’ve had to cancel on in the last few weeks (it's a long list) but I promise that I will make it up to you in the coming weeks as I start to feel better.
Thanks for the food deliveries, kind messages, thoughts and prayers - as always, much appreciated!
So for now, mark your calendars and hope to see you all at Manhattan's on Sunday March 25!
I just watched Tom Brady of the New England Patriots miss his "Hail Mary" pass in the last seconds of the Super Bowl, and hoping that my new "Hail Mary" in the form of this clinical trial at the Juravinski Cancer Centre will have better results.
I’ve had some great news and we’ve begun the process of having me participate in this fresh new prostate cancer clinical trial at the Juravinski Cancer Centre in Hamilton. I may have to do one more chemo session but I’m inclined to decline this final session and just wait for the clinical trial to begin, which would be a few weeks away. In any case, it now appears that both chemotherapy rounds have not helped as my PSA continues to go up. I still need to have some tests done and get a few things confirmed and genetic details matched up, but at this point, I am hoping that sometime in March/April I will start the clinical trial, which the oncologist who is running it is extremely optimistic about and believes will give me up to a 70% chance of good results based on what we know so far. For the clinical trial, the drugs are in the form of pills and do not have the typical negative side effects that chemotherapy has. So, to be in the position of getting into this trial that has minimal side effects and has a great chance of helping me is fantastic news for me and another clear example of how incredibly lucky I am. I still need to pass through a couple of hurdles for it to become reality, but keeping my fingers crossed.
On another happy note, we now have a date confirmed for the Manhattan’s Music Party on Sunday, March 25 at Manhattan’s Pizza, Bistro, and Music Club in Guelph at 951 Gordon Street. It's going to be an afternoon open-mic/jam type event something like 1:00pm - 5:00pm (to be confirmed) and drop-in type thing. You can get great food and drinks there and sign up if you want to get up and sing or play. Instruments will be provided.
I will keep you posted with news on the event on Facebook as well as here on this web page:
http://www.twoinsix.com/
IMPORTANT: Please make sure you check this above link before coming in case I have to cancel last-minute, which is a possibility based on my health and what I’ve experienced in the last few weeks.
I apologize to everyone whom I’ve had to cancel on in the last few weeks (it's a long list) but I promise that I will make it up to you in the coming weeks as I start to feel better.
Thanks for the food deliveries, kind messages, thoughts and prayers - as always, much appreciated!
So for now, mark your calendars and hope to see you all at Manhattan's on Sunday March 25!
Subscribe to:
Posts (Atom)