Well what the whirlwind the past few weeks have been. I guess I can start by letting you know that the Etoposide chemotherapy was not working therefore we stopped and after one round. I I knew the success rate was not very high with this drug but figured I may as well try it at least until we can get the Avastin going. That's the
This past Saturday November 3/2012 a group of 20 plus volunteers put together a fundraising event for me in order to raise funds to start the Avastin. Just at the event alone, over $23,000 was raised which totally floored me. That amount does not include the bank trust account that has been setup also. The night was a huge success and I think everyone went home happy. The next morning, Faith and I received yet another surprise. Kelli M., Winner of the two WestJet tickets to anywhere they fly, ever so kindly donated the tickets back to my daughter and I. We were both overwhelmed at her generosity and kindness.
So beginning Tuesday November 13 2012 I will start the Avastin treatments. This involves going to a private clinic in London to receive the infusion every two weeks. Since it is not funded by the government it cannot be done at the London regional cancer clinic or any other government facility in Ontario. We're still putting pressure on the provincial government to follow suit with British Columbia, Manitoba and Newfoundland to fund this drug as they do in those provinces for those suffering from brain cancer. Hopefully they will see how serious we are about this issue because we do not intend to back down. My hope is that one day soon no one else will have to struggle financially in the province of Ontario because of a life prolonging drug that has been dangled like a carrot in front of their face.
Physically, my left side has become much weaker to the point where it is pretty much useless to me in daily life. My oncologist said that some of it may return but no guarantees. This is due to the tumour pushing on the brain in preventing the signals from traveling from the brain to my left arm and leg. To look at me, my left side has the same characteristics as someone who has suffered a stroke. I am ever so slowly getting used to this but is obviously not a walk in the park. A friend of mine suggested the program available on windows seven utilizing speech to text technology where in essence you talk into a microphone and it converts your words into text on most computer programs. This definitely cuts down on my frustration level while trying to do things such as writing this blog. It really sucks watching your body deteriorate and there's not a damn thing you can do about it.
Hopefully Faith and I will be able to get away in January after I get a few treatments under my belt and insure that the side effects are minimal. Faith said that she would like to travel to Hawaii for our holiday so that is what I'm leaning toward. Obviously my health will dictate where we go though. It will definitely be somewhere warm.
In closing, I would just like to thank everyone involved in the fundraising activity, from my team of 20 plus volunteers down to the wonderful staff at the Saint Thomas Senior Centre for allowing us to use their venue and everyone in between. The personal and corporate donations, both in gifts and financial donations were out of this world. I would be blogging for hours if I were to list every person that deserved a personal thank you from me for allowing me the opportunity to spend some more quality time with my family and friends. I truly never thought my circle of friends was as large as it has turned it to be. I am humbled and honoured at the same time.
I will post again after I have a couple of treatments under my belt to let you know how things are going. I'm scheduled for an MRI in December. Hopefully it's an early Christmas present of Tumour stabilization or shrinkage!!!!
Again I thank you all from the bottom of my heart for whatever part you may have played in making this celebration of Ed such a huge success.
Sincerely,
Ed
Friday, November 9, 2012
Wednesday, October 24, 2012
Oct 24 2012
So there it went.....21 days of a 28 day cycle on Etoposide. This is the one of the older chemos that my NO (neuro-oncologist) thought I should give a whirl, just for a crap-shoot I assume, since its success rate falls in the 10-20% range. After one cycle of it and even increasing my anti-seizure meds, I'm still experiencing focal seizures. To me, that says the stuff is not working. I could be wrong and there are other possible root causes but after fighting this for almost 5 years now, I have gotten to know the signs and symptoms pretty good. That being said, I have a week to decide whether or not to start round two of this stuff, or wait until Nov 2nd and review the options with my NO and possibly start the Avastin from there (as long as my blood counts have not deteriorated too much from the Etoposide) As of today, I am leaning toward starting the Avastin sooner than later.
Along with the focal seizures, my left side is becoming much weaker. Its at the point where I can only use my right hand for typing....cannot sign my own name or print, and many other tasks I'd normally use my dominant left hand for. So yes, it is taking me forever to hammer out this blog using only one hand and correcting all my errors along the way! I may have to switch to video blogging soon. Anyone got any other ideas??
The response to the Facebook pages has been tremendous. Keep sending those letters and e-mails in to our gov't officials! They have to wake up one day....whether its during my time, or the next person who stands up to fight for some extra time with thier loved ones in Ontario. Guess our Provincial Gov't is just not as compassionate as British Columbia, Manitoba or Newfoundland!!
~~insert coffee break for hand to rest~~ lol
I will never be truly able to extend how grateful I am to all of my team and supporters of putting together this fundraiser to enable me to start the Avastin program. I am truly blessed to be surrounded by such a caring group of people. This includes family, military, Cami, school and even complete strangers who have contributed in one way or another to hopefully grant me some more quality time with those who are important to me. I sit here in complete awe of each and every one of you. Thank you for your tireless efforts.
On another positive note....I am possibly qualified for up to a 20% discount (if you can call it that) on the cost of the Avastin from the manufacturer itself. I just have to submit some previous years tax forms etc and they will determine if I qualify. This would equate to possibly reducing the monthly cost of the drug from $8740 to $6992. Still a crazy amount but every dollar helps. I will keep you posted on the outcome of that....hopefully there are no hidden clauses hiding in the background!
Well my right hand is telling me it is quitting time but before I sign off, I just want each and everyone of you to know that although every day is an emotional and physical battle for me (yes, I know I'm good at putting on the tough guy face) my strength comes from all of you. Having you guys in my corner is what keeps me lacing up the gloves every day, getting out of bed.....and fighting for my life.
Love to you all
Ed
Along with the focal seizures, my left side is becoming much weaker. Its at the point where I can only use my right hand for typing....cannot sign my own name or print, and many other tasks I'd normally use my dominant left hand for. So yes, it is taking me forever to hammer out this blog using only one hand and correcting all my errors along the way! I may have to switch to video blogging soon. Anyone got any other ideas??
The response to the Facebook pages has been tremendous. Keep sending those letters and e-mails in to our gov't officials! They have to wake up one day....whether its during my time, or the next person who stands up to fight for some extra time with thier loved ones in Ontario. Guess our Provincial Gov't is just not as compassionate as British Columbia, Manitoba or Newfoundland!!
~~insert coffee break for hand to rest~~ lol
I will never be truly able to extend how grateful I am to all of my team and supporters of putting together this fundraiser to enable me to start the Avastin program. I am truly blessed to be surrounded by such a caring group of people. This includes family, military, Cami, school and even complete strangers who have contributed in one way or another to hopefully grant me some more quality time with those who are important to me. I sit here in complete awe of each and every one of you. Thank you for your tireless efforts.
On another positive note....I am possibly qualified for up to a 20% discount (if you can call it that) on the cost of the Avastin from the manufacturer itself. I just have to submit some previous years tax forms etc and they will determine if I qualify. This would equate to possibly reducing the monthly cost of the drug from $8740 to $6992. Still a crazy amount but every dollar helps. I will keep you posted on the outcome of that....hopefully there are no hidden clauses hiding in the background!
Well my right hand is telling me it is quitting time but before I sign off, I just want each and everyone of you to know that although every day is an emotional and physical battle for me (yes, I know I'm good at putting on the tough guy face) my strength comes from all of you. Having you guys in my corner is what keeps me lacing up the gloves every day, getting out of bed.....and fighting for my life.
Love to you all
Ed
Friday, October 12, 2012
Oct 12 2012
So what a week or so it has been. A ton of good things happening but it is also taking a small toll on me I think. 2 focal seizures in the past 2 days....all just stress-related I'm hoping. I can't thank Dianne enough for all the tireless work she has put into this effort thus far. I think I need to be holed up in a hotel somewhere for a couple of days to get my affairs in order and re-group somewhat.
I don't think we will get much, if any response from Deb Matthews however, as I was informed yesterday by her assistant that this matter will go through the C.E.D. (Committee to Evaluate Drugs) under the direction of a Diane MacArthur sp? Matthews position is prohibited from getting involved in any specific cases to apparently keep politics and emotionalism out of the results. Makes sense I guess. The bottleneck right now is my Oncologist, with his preparation of a report that he promised me a week ago today! And yes, I've called daily to everyone but God at the London Regional Cancer Clinic inquiring! I'm sure he is a busy man but hey, I'm a dying man dammit.
We are planning a sort of Celebration party in November hopefully so that I may see old and new friends alike. Will pass along details as they become available. Its too much for me to have daily visitors at the moment with all that is going on, so this way I can make a terrific evening of it and invite you all to come celebrate my life with me. It may sound morbid to some but this is what I want to have happen.....people to see and visit with me before things turn south.
I'm on Day 10 of 21 of the Etoposide Chemo right now. No noticeable side effects other than some hand and lip numbness, which was listed as possible side effects anyway. No sense telling the Cancer clinic though....can't even get a damned form filled out there. Sorry, but slowly losing faith in that facility. I will remain on Etoposide for 2 rounds, perform an MRI to see what, if any effects its had on the growing tumour, and then 99.9% chance of switching to the Avastin after that. Fingers crossed after that, being as it is my last possible hope with Western Medicine.
Sleep and I are still enemies it seems...partially my own fault. I did get a new sleeping pill to try but am almost scared to take it because it already seems there are not enough hours in the day to accomplish what I need to and the wee hours of the morning seem to be when I get Ed time, to work on what is important to me....such as writing this blog to keep everyone up to date without having to repeat it over and over. It sucks when your conversations with people only revolve around the Big C. Count your blessings every day people!! God never promised you tomorrow.
EJM68
I don't think we will get much, if any response from Deb Matthews however, as I was informed yesterday by her assistant that this matter will go through the C.E.D. (Committee to Evaluate Drugs) under the direction of a Diane MacArthur sp? Matthews position is prohibited from getting involved in any specific cases to apparently keep politics and emotionalism out of the results. Makes sense I guess. The bottleneck right now is my Oncologist, with his preparation of a report that he promised me a week ago today! And yes, I've called daily to everyone but God at the London Regional Cancer Clinic inquiring! I'm sure he is a busy man but hey, I'm a dying man dammit.
We are planning a sort of Celebration party in November hopefully so that I may see old and new friends alike. Will pass along details as they become available. Its too much for me to have daily visitors at the moment with all that is going on, so this way I can make a terrific evening of it and invite you all to come celebrate my life with me. It may sound morbid to some but this is what I want to have happen.....people to see and visit with me before things turn south.
I'm on Day 10 of 21 of the Etoposide Chemo right now. No noticeable side effects other than some hand and lip numbness, which was listed as possible side effects anyway. No sense telling the Cancer clinic though....can't even get a damned form filled out there. Sorry, but slowly losing faith in that facility. I will remain on Etoposide for 2 rounds, perform an MRI to see what, if any effects its had on the growing tumour, and then 99.9% chance of switching to the Avastin after that. Fingers crossed after that, being as it is my last possible hope with Western Medicine.
Sleep and I are still enemies it seems...partially my own fault. I did get a new sleeping pill to try but am almost scared to take it because it already seems there are not enough hours in the day to accomplish what I need to and the wee hours of the morning seem to be when I get Ed time, to work on what is important to me....such as writing this blog to keep everyone up to date without having to repeat it over and over. It sucks when your conversations with people only revolve around the Big C. Count your blessings every day people!! God never promised you tomorrow.
EJM68
Sunday, October 7, 2012
Oct. 10/12
Happy Thanksgiving to all !
Firstly, if anyone who reads this Blog did not get my latest update via e-mail or Facebook message, please send me an e-mail at ed_mcdade@hotmail.com and I will forward the information to you.
So I have started on a new chemo as of Oct. 3/12. ETOPOSIDE is another oral chemo that I will take each day for 21 days then get one week reprieve from and then start the process again. We are hoping to be able to at least use this for 2 rounds and then do another MRI to see what effect it has had on the tumour. If there are no positive results showing on the MRI, I will then (99.9% sure) proceed to the final conventional treatment available....AVASTIN.
In discussion with the drug company that manufactures Avastin, Roche, it looks like it will cost me approx. $8700.00 per month minus any possible assistance they may provide ( up to 20%) if I qualify. I am still waiting to hear back on what "qualifies"you for assistance.
With the assistance of some friends, we have been lobbying to the Provincial levels of gov't to try to get this drug covered for Brain Tumour patients. It just does not seem fair that they make this drug so far out of reach for us common folk. If not even for my case, I hope the stirring of the pot helps others in the future faced with the same issue.
I truly apologize if I have not been able to return your phone calls, e-mails etc as of yet. I am working on it though. All your messages mean the world to me :) I have read each and every one of them and saved them.
Please truly be THANKFUL this weekend for all that you have been blessed with in your lives. God never promised us tomorrow.
Until my next post........take care and know that you are all in my thoughts.
Tomorrow I shall wake to fight again!
PS: I love you Faith! :)
Firstly, if anyone who reads this Blog did not get my latest update via e-mail or Facebook message, please send me an e-mail at ed_mcdade@hotmail.com and I will forward the information to you.
So I have started on a new chemo as of Oct. 3/12. ETOPOSIDE is another oral chemo that I will take each day for 21 days then get one week reprieve from and then start the process again. We are hoping to be able to at least use this for 2 rounds and then do another MRI to see what effect it has had on the tumour. If there are no positive results showing on the MRI, I will then (99.9% sure) proceed to the final conventional treatment available....AVASTIN.
In discussion with the drug company that manufactures Avastin, Roche, it looks like it will cost me approx. $8700.00 per month minus any possible assistance they may provide ( up to 20%) if I qualify. I am still waiting to hear back on what "qualifies"you for assistance.
With the assistance of some friends, we have been lobbying to the Provincial levels of gov't to try to get this drug covered for Brain Tumour patients. It just does not seem fair that they make this drug so far out of reach for us common folk. If not even for my case, I hope the stirring of the pot helps others in the future faced with the same issue.
I truly apologize if I have not been able to return your phone calls, e-mails etc as of yet. I am working on it though. All your messages mean the world to me :) I have read each and every one of them and saved them.
Please truly be THANKFUL this weekend for all that you have been blessed with in your lives. God never promised us tomorrow.
Until my next post........take care and know that you are all in my thoughts.
Tomorrow I shall wake to fight again!
PS: I love you Faith! :)
Tuesday, September 25, 2012
Sept 25 2012
Well after a lengthy 3-way call with General Motors and our Health Care insurance provider this morning, they flat out told me NO, they do not cover the Avastin drug for use in brain cancer. I feel as if the doors are all beginning to close around me now. Seems to be no escape from the enevitable it seems.
.......................................... . . .
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Monday, September 24, 2012
Sept 24 2012
So as my body was already telling me, my Oncologist confirmed today that newest chemotherapy they put me on is not working. My latest MRI taken last Tuesday showed growth in the tumour. With that being said, he has taken me off the chemo and I start planning my next course of action.
Exactly.....what is my next plan!!?? Well there is a drug out there that MAY work for a period of around 6 months to a year called Avastin. Downside to it is the fact that is only covered in British Columbia for use on Brain Cancer folks and not the rest of Canada. For those of us in good ole Ontario, that means it will cost between $8000 and $15000 per month out of pocket if your private insurance company does not cover it either. My Oncologist forewarned me that the majority will NOT cover it because testing shows that the lack of longevity it provides does not make financial sense.
More downsides are that since this type of chemo attacks the blood vessels of the tumour, my Oncologist has witnessed patients dying from complications such as developing a bleed on the brain due to burst blood vessels. Not to mention heart failure as well as a number of other serious side effects.
So over the next few days I obviously have some serious thinking to do as well as investigating the pros and cons of this drug. Oh, and then there is the issue of whether or not my private insurance will even cover it. ( I seriously have my doubts ) For the insurance company, it will all be about making a business decision based on that whole "longevity "issue. After all, they have our gov't standing behind them on this one.
Anyways, things don't seem too rosy right now so I will close this off and maybe continue it another day when I have thought things through a bit more and hopefully have some answers.
Funny thing is...........For the past couple of years, I've told myself I will probably only see the 5 year mark. Hmmmm...this coming January IS 5 years.
Til next time
Ed
Exactly.....what is my next plan!!?? Well there is a drug out there that MAY work for a period of around 6 months to a year called Avastin. Downside to it is the fact that is only covered in British Columbia for use on Brain Cancer folks and not the rest of Canada. For those of us in good ole Ontario, that means it will cost between $8000 and $15000 per month out of pocket if your private insurance company does not cover it either. My Oncologist forewarned me that the majority will NOT cover it because testing shows that the lack of longevity it provides does not make financial sense.
More downsides are that since this type of chemo attacks the blood vessels of the tumour, my Oncologist has witnessed patients dying from complications such as developing a bleed on the brain due to burst blood vessels. Not to mention heart failure as well as a number of other serious side effects.
So over the next few days I obviously have some serious thinking to do as well as investigating the pros and cons of this drug. Oh, and then there is the issue of whether or not my private insurance will even cover it. ( I seriously have my doubts ) For the insurance company, it will all be about making a business decision based on that whole "longevity "issue. After all, they have our gov't standing behind them on this one.
Anyways, things don't seem too rosy right now so I will close this off and maybe continue it another day when I have thought things through a bit more and hopefully have some answers.
Funny thing is...........For the past couple of years, I've told myself I will probably only see the 5 year mark. Hmmmm...this coming January IS 5 years.
Til next time
Ed
Tuesday, September 18, 2012
Sept 19 2012
Good EARLY morning:
Just a quick blog to let you know that I go for my first MRI today since being diagnosed with this latest tumour. Being as this new chemotherapy is kicking the heck out of me, I can only hope that it is doing the same to the tumour. I will not get the MRI results until a week from now so stay tuned I guess.
Sleep is still not my friend. I have tried almost every concoction out there with no luck as of yet. I guess the old saying is true.....you can sleep when you're dead. My blood counts are plummetting this week....platelet levels and white cell levels being the most affected.
I will update more next week after my Cancer Clinic appt in regards to results.
Take care
Ed
Just a quick blog to let you know that I go for my first MRI today since being diagnosed with this latest tumour. Being as this new chemotherapy is kicking the heck out of me, I can only hope that it is doing the same to the tumour. I will not get the MRI results until a week from now so stay tuned I guess.
Sleep is still not my friend. I have tried almost every concoction out there with no luck as of yet. I guess the old saying is true.....you can sleep when you're dead. My blood counts are plummetting this week....platelet levels and white cell levels being the most affected.
I will update more next week after my Cancer Clinic appt in regards to results.
Take care
Ed
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