Wednesday, November 30, 2011
Monday, November 21, 2011
I spoke too soon, were back to Rochester tomorrow
I guess I spoke too soon, wishful thinking but turns out were still jumping through hoops trying to get the drug here. After many hours my team here at Trillium has managed to get Health Canada approval but with a catch -- that insurance (OHIP) won't cover the ~$10,000 drug cost of SGN-35 (per treatment!)..
So after all the efforts turns out right now its cheaper to continue getting it in Rochester where the drug company Seattle Genetics has been taking care of the drug cost for Canadians since it went to market Aug 19 (each of the US patients' medical insurance has been covering 100% of drug cost from day 1 it was on market).
I am just so frustrated with the system that there are still problems getting the drug to patients here.. Dont even want to imagine anyone else right now in the kind of life and death situation as I was back in April, desperate to get this drug.. Just cant imagine them being told they can get the drug but its not covered.. No one has $100,000+ lying around to pay for the treatment that I have had already. Very sad.
Besides the drug cost, we are still hoping to change OHIP decision denying us our out of country expenses (averaging $1500 per visit - for infusion itself & doctor fee). I have a telephone pre-trial hearing sometime early December with an Appeal Board. Myself vS Ohip. I get to plea my case, hopefully they will see the potential this drug has to save lives and agree to pay for it as they would for any other accepted treatment.. Wish me luck.
So for the 11th time now, we venture out tomorrow 5am to get another half hour infusion of the drug.. Exhausting trips but realizing more and more how fortunate I am to be getting it at all!
Happy Thanksgiving this week to all who are celebrating,
Paulina
So after all the efforts turns out right now its cheaper to continue getting it in Rochester where the drug company Seattle Genetics has been taking care of the drug cost for Canadians since it went to market Aug 19 (each of the US patients' medical insurance has been covering 100% of drug cost from day 1 it was on market).
I am just so frustrated with the system that there are still problems getting the drug to patients here.. Dont even want to imagine anyone else right now in the kind of life and death situation as I was back in April, desperate to get this drug.. Just cant imagine them being told they can get the drug but its not covered.. No one has $100,000+ lying around to pay for the treatment that I have had already. Very sad.
Besides the drug cost, we are still hoping to change OHIP decision denying us our out of country expenses (averaging $1500 per visit - for infusion itself & doctor fee). I have a telephone pre-trial hearing sometime early December with an Appeal Board. Myself vS Ohip. I get to plea my case, hopefully they will see the potential this drug has to save lives and agree to pay for it as they would for any other accepted treatment.. Wish me luck.
So for the 11th time now, we venture out tomorrow 5am to get another half hour infusion of the drug.. Exhausting trips but realizing more and more how fortunate I am to be getting it at all!
Happy Thanksgiving this week to all who are celebrating,
Paulina
Thursday, November 3, 2011
SGN-35 #10
Back in Rochester, treatment #10 today.
Hard to believe it's been half a year since that life altering first dose of SGN-35.
Possibly the last time we travel here to get it as arrangements are being made back home to get the drug there under care of my local oncolgist. Rochester Strong Memorial will always hold a special place in our hearts. On behalf of our family thank you for all you do.
Hard to believe it's been half a year since that life altering first dose of SGN-35.
Possibly the last time we travel here to get it as arrangements are being made back home to get the drug there under care of my local oncolgist. Rochester Strong Memorial will always hold a special place in our hearts. On behalf of our family thank you for all you do.
Saturday, October 8, 2011
Thankful.
We have been carrying on with everyday life trying not to think too much, and are thankful for how things are at the moment.
We all started focusing on a healthier lifestyle.. juicing daily, and taking extra vitamin C and D (in flu season) and probiotics. I have also started taking minimal doses of B17 (in the form of 3 apricot seeds daily) for the proposed anti-cancer properties.
And part of changes in lifestyle, I am overjoyed to actively be a part of Karolek starting school. I cannot tell you, I personally have shed more tears than our son as he starts school (actually he has surprised us and hasn't cried once and I have every hope that this will not change). Very emotional time for Konrad and I, seeing our baby start the school career, starting a new phase of life. This on top of the general September blues - end of summer, weather changing..
It is impossible to ignore the neck nodes which remain eerily present. Looks like a stable but partial remission is new term being used to describe where I am now. Luckly this doesnt really reflect how I feel, even I am fooled sometimes, because knock on wood, at this moment I feel very well. As many of you well know, I have been struggling with what to do ever since Washington, but only recently decided to opt out of transplant for now, with the doctos backing, and with good reason.
I will carry on with what is controlling disease for now (SGN-35). It feels like there is no right or easy path. Your patience with me is greatly appreciated, I have had a few friendly reminders to write more frequently.. And I appologize I have not, but its not always easy.
Good news that has come to all HL and ALCL patients out there since I last wrote is that SGN-35 was FDA approved on August 19, first drug for relapsed lymphomas to come to market in 30 years. Market name for Brentuximab vedotin (SGN-35) is Adcetris. They are still working out with Health Canada the 'special access' program to make the drug available to Canadians, so for now we have to continue going to Rochester for treatment every 21 days. But it looks like patients can soon get it here. What is strange is that it is already being provided in UK, and it feels like we are the last to get many of the clinical trial drugs out there today. No point in dwelling on this, but it does frustrate me to see that in some major aspects of health care we are so often really trailing far behind other parts of the world.. I am in the midst of appealing the OHIP decision not to pay for our out of country expenses that have been accumulating for awhile now, for a drug that is now 'accepted' in Canada.
On a much brighter note, this September has brought us our 6 year anniversary of marriage. And we rejoice, with the sun shining again these days :))
Much love and thanks to you for your constant concern and support and being part of our lives.
Happy Thanksgiving!
Paulina
We all started focusing on a healthier lifestyle.. juicing daily, and taking extra vitamin C and D (in flu season) and probiotics. I have also started taking minimal doses of B17 (in the form of 3 apricot seeds daily) for the proposed anti-cancer properties.
And part of changes in lifestyle, I am overjoyed to actively be a part of Karolek starting school. I cannot tell you, I personally have shed more tears than our son as he starts school (actually he has surprised us and hasn't cried once and I have every hope that this will not change). Very emotional time for Konrad and I, seeing our baby start the school career, starting a new phase of life. This on top of the general September blues - end of summer, weather changing..
It is impossible to ignore the neck nodes which remain eerily present. Looks like a stable but partial remission is new term being used to describe where I am now. Luckly this doesnt really reflect how I feel, even I am fooled sometimes, because knock on wood, at this moment I feel very well. As many of you well know, I have been struggling with what to do ever since Washington, but only recently decided to opt out of transplant for now, with the doctos backing, and with good reason.
I will carry on with what is controlling disease for now (SGN-35). It feels like there is no right or easy path. Your patience with me is greatly appreciated, I have had a few friendly reminders to write more frequently.. And I appologize I have not, but its not always easy.
Good news that has come to all HL and ALCL patients out there since I last wrote is that SGN-35 was FDA approved on August 19, first drug for relapsed lymphomas to come to market in 30 years. Market name for Brentuximab vedotin (SGN-35) is Adcetris. They are still working out with Health Canada the 'special access' program to make the drug available to Canadians, so for now we have to continue going to Rochester for treatment every 21 days. But it looks like patients can soon get it here. What is strange is that it is already being provided in UK, and it feels like we are the last to get many of the clinical trial drugs out there today. No point in dwelling on this, but it does frustrate me to see that in some major aspects of health care we are so often really trailing far behind other parts of the world.. I am in the midst of appealing the OHIP decision not to pay for our out of country expenses that have been accumulating for awhile now, for a drug that is now 'accepted' in Canada.
On a much brighter note, this September has brought us our 6 year anniversary of marriage. And we rejoice, with the sun shining again these days :))
Much love and thanks to you for your constant concern and support and being part of our lives.
Happy Thanksgiving!
Paulina
Wednesday, August 24, 2011
Trip to Washington cut short by earthquake
We got home safely at 4am after a long 10 hour drive late into the night. Taking it easy today. Karolek was a trooper, what a kid, felt so bad but we were literally shaken, and decided to go home right after the NIH building was evacuated at 2pm Tuesday --5.8 earthquake had the entire building shaking around us.
What a feeling, we were on the 12th floor after I had just had an ECHO cardiogram, waiting to talk to another lymphoma doctor before we were all done, and then suddenly we found ourselves escaping down the emergency stair well when we felt the walls shaking and ground beneath us rumbling.. If anything we were reminded of how fragile we all are, and couldnt help but wonder what sort of sign this was.
Oddly enough, right as I was on my way into my auto stem cell transplant last June 2010 at PMH, we were out on the streets in downtown Toronto, and it was small but the ground shook beneath us. Didnt think much of it -thought it was a subway. Went into the hospital and they said it was, in fact, tremblings of an earthquake that were felt. Much weaker then, but how significant, that we were now closer to the epicentre of a quake, feeling it much stronger the exact day we were putting our first foot in the door for an allo transplant (much riskier of a procedure). Messing with nature comes to mind? Cant help but be stopped in my tracks and wonder.
We obviously havent made any decisions, I personally cannot grasp the gravity of what just happened. What it means, but I believe the cards will unfold and it is in the hands of God what happens next, and believe He will show us a way that feels right in moving forward.
Just wanted to update and post that we are alright, back home.. At a loss for words, so I end at that.
Paulina
Karolek wearing 'to the rescue' shirt as we sit outside NIH,
immediately after earthquake hits Washington area around 2pm.
What a feeling, we were on the 12th floor after I had just had an ECHO cardiogram, waiting to talk to another lymphoma doctor before we were all done, and then suddenly we found ourselves escaping down the emergency stair well when we felt the walls shaking and ground beneath us rumbling.. If anything we were reminded of how fragile we all are, and couldnt help but wonder what sort of sign this was.
Video: Aftermath of earthquake, in front of Clinical Building, NIH
We obviously havent made any decisions, I personally cannot grasp the gravity of what just happened. What it means, but I believe the cards will unfold and it is in the hands of God what happens next, and believe He will show us a way that feels right in moving forward.
Just wanted to update and post that we are alright, back home.. At a loss for words, so I end at that.
Paulina
Sunday, August 21, 2011
Summer Days.. Heading to NIH tomorrow!
So much has happened since the last post, essentially since receiving the 5th round of SGN-35. The day of that treatment, we got home and my neck lymph nodes were swollen, along with a sore throat and difficulty swallowing. Normally, one wouldn't think too much of this (Konrad also had similar symptoms from changes in temperatures, extreme humidity outside and air conditioning everywhere else); but with me red flags were immediately raised. CT scans, blood work, restaging. I am trying not to look too much at any of this (though its hard), and be cautiously optimistic that it will just pass.
Antibiotics started shortly after round 5 helped to shrink these lymph nodes (and take away the sore throat I had along with it), however a week later they popped up again :( I am now back on the amoxicillin and will remain on it likely right up until the next treatment. We were in Rochester last Thursday Aug 11 and luckily got round 6 of treatment, however with a warning that I will not receive round 7 in 2 weeks, if the node swelling is not resolved by then.
Dilemma strikes again. We wait and see, and I am in the process of trying to get around the treatment maze we unfortunately have in Canada, bending over backwards in trying to arrange for back-up treatment (proposed drugs are Romidepsin and Pralatrexate). They are FDA approved but only available in US, and not being insured for medical expenses out of country makes it impossible to afford Romidepsin for example, costing $10,000 USD weekly for drug cost alone. Sadly, the patient is left with researching into ways to get around this. Will update on progress. All I can say is without the strength I gained up until the fifth round I would not even be able to do so.
We are still hopeful that this will resolve, and continuing on SGN-35 with a remission will keep the door open for an allo (donor) transplant.
We are being seen at National Institutes of Health (NIH) in Bathesda near Washington this Tuesday August 23rd :) They may also propose alternate treatment if in fact needed in 2 weeks time for conditioning to get into a trial they have there specializing in allo stem cell transplant (sct) after failed auto-sct. I am very thankful to have been referred for consideration there, since being enrolled in one of their trials could mean having the transplant done on NIH funding. A huge deal, especially considering there are no programs available for me to do this procedure here in Canada. We leave tomorrow morning, 10 hour drive ahead of us, but we are happy to have this opportunity so will make the very best of this trip.
Besides all this craziness, we're just continuing on with the new 'normal' we call everyday life. We have been trying to meet with people whenever we get the chance, and have enjoyed visits with some friends whom we havent seen in far too long, how refreshing and warm a feeling that brings. Happily enjoying the summer, and breathing in the fresh cooler air up north most weekends with our family.
We watched the Cars 2 movie that I've been looking forward to seeing ever since I was in hospital back in January and heard its coming out. Karolek spent his two-s and three-s were living and loving CARS. This kid has a McQueen toddler bed he sleeps in to this day, and was Mater for his third Halloween. Happy to report his love for the movie and characters is reborn :) (though we thought it was disappointingly not as good as the first).
We also had a fabulous time at our friends Kat and Carl's long-awaited wedding yesterday! We were delighted to be part of it, and dance the night away in great company, family and friends all with a unique dress code: ladies in pink, men in black - so fun and unique. Thank you for a great time!
We hope summer has been good to all of you, that you've found the time to sit back and relax, and take in the moment.
Paulina
Antibiotics started shortly after round 5 helped to shrink these lymph nodes (and take away the sore throat I had along with it), however a week later they popped up again :( I am now back on the amoxicillin and will remain on it likely right up until the next treatment. We were in Rochester last Thursday Aug 11 and luckily got round 6 of treatment, however with a warning that I will not receive round 7 in 2 weeks, if the node swelling is not resolved by then.
Dilemma strikes again. We wait and see, and I am in the process of trying to get around the treatment maze we unfortunately have in Canada, bending over backwards in trying to arrange for back-up treatment (proposed drugs are Romidepsin and Pralatrexate). They are FDA approved but only available in US, and not being insured for medical expenses out of country makes it impossible to afford Romidepsin for example, costing $10,000 USD weekly for drug cost alone. Sadly, the patient is left with researching into ways to get around this. Will update on progress. All I can say is without the strength I gained up until the fifth round I would not even be able to do so.
We are still hopeful that this will resolve, and continuing on SGN-35 with a remission will keep the door open for an allo (donor) transplant.
We are being seen at National Institutes of Health (NIH) in Bathesda near Washington this Tuesday August 23rd :) They may also propose alternate treatment if in fact needed in 2 weeks time for conditioning to get into a trial they have there specializing in allo stem cell transplant (sct) after failed auto-sct. I am very thankful to have been referred for consideration there, since being enrolled in one of their trials could mean having the transplant done on NIH funding. A huge deal, especially considering there are no programs available for me to do this procedure here in Canada. We leave tomorrow morning, 10 hour drive ahead of us, but we are happy to have this opportunity so will make the very best of this trip.
We watched the Cars 2 movie that I've been looking forward to seeing ever since I was in hospital back in January and heard its coming out. Karolek spent his two-s and three-s were living and loving CARS. This kid has a McQueen toddler bed he sleeps in to this day, and was Mater for his third Halloween. Happy to report his love for the movie and characters is reborn :) (though we thought it was disappointingly not as good as the first).
We hope summer has been good to all of you, that you've found the time to sit back and relax, and take in the moment.
Paulina
Tuesday, July 19, 2011
Results are in
My sincere appologies for not writing sooner.
Anyone who has seen me in the last couple months (since starting SGN-35), will say I smile more than I have since even I can remember.. I have been getting my share of sun with the beautiful summer we've had, but its not the tan but a kind of glow from the immense happiness and appreciation for life that I carry inside me.. Hard to describe, each moment is a living reminder that you are holding something you felt escaping your grasp just a short while ago.
Konrad and I found ourselves holding our breath as the oncologist was reading results this week from the bone marrow biopsy. We've had our share of bad news the past 2 years, even when we've least expected it.. but God has blessed us time and time again, and this time the news did indeed reflect the way I feel.
The bone marrow biopsy came back NEGATIVE for lymphoma. So at this time, NED - No Evidence of Disease.
We have seen how quickly this can change, so we continue to hold our breath, but yes, we do REJOICE in the moment. Especially in the fact that this now opens new doors.. Possible cure by transplant from a donor (since my own immune system fails to recognize the lymphoma).
As often cancer treatment goes, the time to subject yourself to the hardest, most difficult procedures, is when you are feeling strongest. Difficult as this may be, as my doctor has said, 'the ball is up in the air' right now; this is the time we have to chose how to fly with it - we can do something, or nothing. We have reached a pivitol moment.
In the words of my good friend, in deciding on next steps, we often literally are left with having to 'take a leap of faith'.. So many thoughts consume me, it is not at all likely that SGN-35 will work forever. I wish it could, and perhaps the cancer is gone forever - but is it worth the risk to do a transplant to ensure it never comes back? I am slowly learning to embrace the fear of what comes next in my life, and letting my faith give me comfort and strength in moving forward.
And only time will tell. All any of us can do is pray, and hope and put our trust in God.
Otherwise things have been great at home, soaking in each moment. We have been cottaging, spending lots of time relaxing in the backyard, BBQ and last weekend we celebrated our friends daughters first birthday at the farm (picture of the three of us below).
Summer is flying by, and Karolek is slowly warming up to the idea of starting school - he starts JK in September! We signed him up for a program called 'Science Magic' once a week in our local library and he loves it (first day involved making slime, and he was so proud of his accomplishment - love how the teacher makes it so fun for 4 year olds).
Sorry for the long-winded letter, I felt I was a bit overdue and I thank you this has helped me put things in perspective.
Were back to Rochester this Friday for round 5.
As a side note, I've added my medical history at the right hand side of the blog page for quick reference. My journey with lymphoma has been somewhat complex, I appologize for being a bit technical, but its more for guests going through similar experience or collecting information - I have found this type of detail most helpful in my own research, on other blogs.
Paulina
Anyone who has seen me in the last couple months (since starting SGN-35), will say I smile more than I have since even I can remember.. I have been getting my share of sun with the beautiful summer we've had, but its not the tan but a kind of glow from the immense happiness and appreciation for life that I carry inside me.. Hard to describe, each moment is a living reminder that you are holding something you felt escaping your grasp just a short while ago.
Konrad and I found ourselves holding our breath as the oncologist was reading results this week from the bone marrow biopsy. We've had our share of bad news the past 2 years, even when we've least expected it.. but God has blessed us time and time again, and this time the news did indeed reflect the way I feel.
The bone marrow biopsy came back NEGATIVE for lymphoma. So at this time, NED - No Evidence of Disease.
We have seen how quickly this can change, so we continue to hold our breath, but yes, we do REJOICE in the moment. Especially in the fact that this now opens new doors.. Possible cure by transplant from a donor (since my own immune system fails to recognize the lymphoma).
As often cancer treatment goes, the time to subject yourself to the hardest, most difficult procedures, is when you are feeling strongest. Difficult as this may be, as my doctor has said, 'the ball is up in the air' right now; this is the time we have to chose how to fly with it - we can do something, or nothing. We have reached a pivitol moment.
In the words of my good friend, in deciding on next steps, we often literally are left with having to 'take a leap of faith'.. So many thoughts consume me, it is not at all likely that SGN-35 will work forever. I wish it could, and perhaps the cancer is gone forever - but is it worth the risk to do a transplant to ensure it never comes back? I am slowly learning to embrace the fear of what comes next in my life, and letting my faith give me comfort and strength in moving forward.
And only time will tell. All any of us can do is pray, and hope and put our trust in God.
Otherwise things have been great at home, soaking in each moment. We have been cottaging, spending lots of time relaxing in the backyard, BBQ and last weekend we celebrated our friends daughters first birthday at the farm (picture of the three of us below).
Summer is flying by, and Karolek is slowly warming up to the idea of starting school - he starts JK in September! We signed him up for a program called 'Science Magic' once a week in our local library and he loves it (first day involved making slime, and he was so proud of his accomplishment - love how the teacher makes it so fun for 4 year olds).
Sorry for the long-winded letter, I felt I was a bit overdue and I thank you this has helped me put things in perspective.
Were back to Rochester this Friday for round 5.
As a side note, I've added my medical history at the right hand side of the blog page for quick reference. My journey with lymphoma has been somewhat complex, I appologize for being a bit technical, but its more for guests going through similar experience or collecting information - I have found this type of detail most helpful in my own research, on other blogs.
Paulina
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