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
Wednesday, October 24, 2012
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.
.......................................... . . .
.......................................... . . .
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
Tuesday, August 14, 2012
Ding Ding Ding....Round Two Chemo Aug. 13/12
Yesterday I was finally cleared to start another round of Chemo. My blood levels etc are not optimal but are good enough according the professionals.......so away we go!! I obviously have mixed emotions about starting this new chemo again since it knocked me on my butt last time and landed me in hospital for 3 days.
Whats the alternative though I guess right? If it keeps me on the right side of the dirt, then I just have to suck it up like the rest of the Cancer World and trudge onward. I apologize if I am repeating myself in advance, but one small light in this tunnel is that they also doubled my dosage of Dexamethasone to decrease the seizures and it seems to be working!! The other edge of that sword is that it doubles the amount of sleep I am deprived of as well as increases my appetite tenfold I think.
Along with that, I feel my tolerance level of normal everyday things has me on edge lately. The joys of drugs. UGH
Busy week ahead of me with appointments, kids soccer 3 times and organizing for this weekend's fundraiser. Thankfully once Sunday is over, so is soccer until Fall and the fundraiser will be a successful memory! At that point, it will be high time to concentrate on ME again and work on keeping as healthy and sane as possible. lol
As much as I sound like a broken record..........thank you to all for the outpouring of support you give me at each and every hurtle. Its that stuff that energizes me and keeps me pushing the envelope even further to keep the Cancer demon away from my doorstep.
I need to find a reasonably priced R.M.T. soon....my left leg's muscles are deteriorating from the numbness issues etc. I feel the atrophy setting in and am losing any flexibility. Any suggestions? Local only please.
Love to you all XX
Ed
Whats the alternative though I guess right? If it keeps me on the right side of the dirt, then I just have to suck it up like the rest of the Cancer World and trudge onward. I apologize if I am repeating myself in advance, but one small light in this tunnel is that they also doubled my dosage of Dexamethasone to decrease the seizures and it seems to be working!! The other edge of that sword is that it doubles the amount of sleep I am deprived of as well as increases my appetite tenfold I think.
Along with that, I feel my tolerance level of normal everyday things has me on edge lately. The joys of drugs. UGH
Busy week ahead of me with appointments, kids soccer 3 times and organizing for this weekend's fundraiser. Thankfully once Sunday is over, so is soccer until Fall and the fundraiser will be a successful memory! At that point, it will be high time to concentrate on ME again and work on keeping as healthy and sane as possible. lol
As much as I sound like a broken record..........thank you to all for the outpouring of support you give me at each and every hurtle. Its that stuff that energizes me and keeps me pushing the envelope even further to keep the Cancer demon away from my doorstep.
I need to find a reasonably priced R.M.T. soon....my left leg's muscles are deteriorating from the numbness issues etc. I feel the atrophy setting in and am losing any flexibility. Any suggestions? Local only please.
Love to you all XX
Ed
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