Tuesday, February 26, 2013
walking on the moon?
NKI has emailed back they will soon send the surgery dates and will make the anesthesiologist appointment the same week (yes, means one trip less!).
A melanoma brother of mine Jonathan told me he thought if I make it through TIL I would be probably one of the first melanoma patients to have been through all the treatments we know of for melanoma, I thought about that and kind of felt like "a small step for mankind..." moment. Nicolas Van Baren from the Ludwig Cancer Institute started a summary graph of all my treatments since the beginning and my husband Alex just completed it and I must confess I have done A LOT of treatments....maybe I am kind of walking on the melanoma treatment moonscape.
For those that are curious I will put a link to a pdf.
Again just for today I want to thank all the people who continue sending emails, love and support in all kinds and shapes and forms. I am making a list of all donations that keep coming our way so that I can send a thank you proper email to each of you by the end of the week, thanks, thanks, thanks!!!!!!
Monday, February 25, 2013
We are all ONE: thanks for all the co-creators of this adventure....
 |
| Portrait by Eddie - FEB 2013 |
Dear all,
We want to say here that we were speechless to see at what speed we are receiving emails of support but also financial support to help me afford the 30,000 target that will help me pay for the costs of the treatment. The email by Ilios Kotsou was only sent last week! But we were also speechless because the support is not only coming from right around here, but also from all the way over there, and beyond…let’s be clear: even people who do not even directly know me but who know me but through a loved one are supporting us. I often say (influenced by nondualist authors that hold me in the darkest hours: “we are all one anyways”) but really? In this new treatment adventure we are concretely co-creating interconnectedness (sure it is a not a CERN evidence-based quantum physics experiment, but still!). I feel like we are all buying a lottery ticket or going to the races and betting together or something. So last night I suddenly felt this anxiety of being “the horse in the race”, but then I thought: hang on a second… the chances are better than the lotto and I am a good bet! Indeed Prof Haanen said 50% response rate, 10-15% complete responders (remission). Then my next anxious thought was: should I still be hanging onto life so much??….and back came the quote from an good old read:
Here is a test to find whether your mission on earth is finished: If you're alive, it isn't.
Richard Back (1977) in Illusions: The Adventures of the Reluctant Messiah
Thursday, February 21, 2013
And this is how we hope the story goes...
And this is how we hope the story goes....Here one of the first patients to receive TIL at MD Anderson, one of the US centers currently doing TIL. Her protocol is slightly different than the one at NKI as her IL2 was spread over weeks. I love her spirit!
What is TIL?
It is tricky to explain,
Here is a very schematic representation of the TIL (Tumor Infiltrating Lymphocyte) treatment
and the research of Prof Haanen as described in the NKI website
https://www.nki.nl/Research/
Here is a very schematic representation of the TIL (Tumor Infiltrating Lymphocyte) treatment
and the research of Prof Haanen as described in the NKI website
https://www.nki.nl/Research/
Tuesday, February 19, 2013
the naked truth
Dear friends,
So we just came back from the mountains - pure white bliss for one week thanks to Alex's family as they have a sweet chalet in Valais...I had a bad cold and was sick as can be, but the smile on the kids at the end of a day of skiing was worth it. My brother Eddie and nephew Carlo were there like 3 year olds new to so much snow and discovery of snowboarding.
On our return our cat minuit gave us a warm meowwwww welcome (thanks Kath for the cat-sitting, again!). Home sweet home.
There was a letter from NKI and my heart started racing, it was for my first anesthesiologist appointment before the surgery to harvest the TILs so I was excited to get started - BUT I was actually expected to be at the hospital last week! so anyways, had to contact them to re-schedule the whole thing...since it is holidays the whole week in the Netherlands I suspect I will not hear anything until next week.
My friend Ilios Kotsou has organized a fundraising mailing to a big list of family/friends/collagues as of yesterday to help us afford the whole thing - you must have all received the email by now. He just makes it all seem so easy...like of course this is how things should be.
I am very touched by all the emails and messages and suggestions of how you can help us. It is so hard for me to step into this place as "asking for help" as I feel naked, bare, kind of just standing there saying "yes we need help for this, cannot do it alone". In my mums' side of the family (the Angulos') they often talk about the pride of being able to do everything alone, never cry, never complaint. I guess I have a bit of that (though my mum says I was a cry baby).
But I must admit today I just have a feeling of incredible trust of what is, and this is exhilarating. To think and feel that "it" might be possible to extend my life, that yes maybe I could still enjoy a longer life with my loved ones of not just months but years, and that WE are actually co-creating this possibility. My faculty and colleagues at SBS-EM had already held my hand when I went to the last trial in the US and I was just taken aback by the wave of love and generosity to help me face those costs. It almost feels like we cannot hold all of that love but we are actually pretty stretchy and you know what? actually all the love fits right in...
Will keep you posted
So we just came back from the mountains - pure white bliss for one week thanks to Alex's family as they have a sweet chalet in Valais...I had a bad cold and was sick as can be, but the smile on the kids at the end of a day of skiing was worth it. My brother Eddie and nephew Carlo were there like 3 year olds new to so much snow and discovery of snowboarding.
On our return our cat minuit gave us a warm meowwwww welcome (thanks Kath for the cat-sitting, again!). Home sweet home.
There was a letter from NKI and my heart started racing, it was for my first anesthesiologist appointment before the surgery to harvest the TILs so I was excited to get started - BUT I was actually expected to be at the hospital last week! so anyways, had to contact them to re-schedule the whole thing...since it is holidays the whole week in the Netherlands I suspect I will not hear anything until next week.
My friend Ilios Kotsou has organized a fundraising mailing to a big list of family/friends/collagues as of yesterday to help us afford the whole thing - you must have all received the email by now. He just makes it all seem so easy...like of course this is how things should be.
I am very touched by all the emails and messages and suggestions of how you can help us. It is so hard for me to step into this place as "asking for help" as I feel naked, bare, kind of just standing there saying "yes we need help for this, cannot do it alone". In my mums' side of the family (the Angulos') they often talk about the pride of being able to do everything alone, never cry, never complaint. I guess I have a bit of that (though my mum says I was a cry baby).
But I must admit today I just have a feeling of incredible trust of what is, and this is exhilarating. To think and feel that "it" might be possible to extend my life, that yes maybe I could still enjoy a longer life with my loved ones of not just months but years, and that WE are actually co-creating this possibility. My faculty and colleagues at SBS-EM had already held my hand when I went to the last trial in the US and I was just taken aback by the wave of love and generosity to help me face those costs. It almost feels like we cannot hold all of that love but we are actually pretty stretchy and you know what? actually all the love fits right in...
Will keep you posted
Thursday, February 7, 2013
Bold and Bald moves: 2013
Thursday February 7
2013
If you know me a bit,
you know I am stubborn, one person once told me many, many years ago…"you
incarnate what Italians call GRINTA"! So as you may (or may not ) have
heard my latest attempt to treat the cancer in Paris did not work.
After almost 5 years
living with cancer, part of me accepts this, medicine is imperfect - so I want
to assure you that I continue to be "well" in spirit and mind and
body and living fully for now, I am happy, very happy. BUT I was lucky to get a
spot…."again"…just in time in a very promising trial.
So I just came back
from discussing a new "TIL" trial for melanoma at the NKI (National
Cancer Institute in the Netherlands) at Amsterdam with Prof Haanen – This is a
young cell transplant therapy with my Tumor Infiltrating Cells for me, more
personalized does not exists I think.
Alex and I come back
with great hope.
Prof Haanen and
surgeon who saw me determined that I am in great shape to join their trial so
now they are waiting for the dutch regulatory approval - once that is done
(really just a procedural aspect) we can start the countdown for the treatment.
The first steps will
be a few consultations for surgery for harvesting of the TILS from one of my
tumors and the young cells from my blood (I will spare you those details!). He
said they have 80-100% success rate for now in growing the TILS into the
billions. After they grow, we can start and I will be 3 weeks in hospital for
the treatment at the NKI. This includes one week of 2 chemos, one week for the
transplant of TIL and High Dose IL2 (only up to 4 or 5 treatments of this last
product are given of this to reboot my immune system) and then the rest of the
time to recover as the side effects are "interesting"….
So the plan is then I
recover…and will be totally bald…and we hope in remission. His response rates
are of 50% but only 10- 15 % get a complete remission.
I will keep you
informed as soon as I get their approval – I will have a hard time doing
personalized feedback of calls. And as you know - I am not good with phone at
all….makes me emotional and tires me to get into it over and over and I suspect
it makes all of you also funky…so please I do not expect you to call or write
or anything, I might even hide away from your calls or emails : I know you are
there for us and have always been. It is not easy to talk about, around
death and cancer I know, it has not been easy for me nor for you I know.
BUT if anyone wants to shave their head in
solidarity I am all game for a good mosaic of bald faces in here….
In the beginning...
My suitcase is open (July 19th 2010)
I was born in El Salvador and migrated to Australia with my family at 18 to run away from the civil war. I migrated again, this time willingly to pursue a PhD in psychology at the University of Geneva and again to do a postdoc in California (UCSB and Stanford). I moved again, now with two kids, to settle as a professor in management at the prestigious Solvay Business School at the Université Libre de Bruxelles. We bought a house. I always felt I had my suitcase next to the door ready to leave…I had to admit that for the first time I had everything to put the suitcase down and simply “be happy”.
In May 2008, precisely on “Euro melanoma” day I got a phone call from the local dermatologist telling me the mole he had taken out was melanoma. He added quickly “thin” and “probably would be fine”, he gave me some statistics…but I was already cold and not listening. I had the first surgery and sentinel node biopsy which placed me at a comfortable stage 1b. I googled melanoma up and felt like vomiting. I searched the dermatologists´ eyes for cues…but I was getting the “standard” follow-up, “do not worry”. I worried. At my second 3 monthly follow up the radiologist saw a node under my arm that “we should keep an eye on”. A month later I insisted to get it checked. And 2 months later, many nodes had grown. Fast forward to March 2009 a lymphadectomy: 25/45 lymphnodes taken out have melanoma. I do radiotherapy, meet my oncologist and start my first trial with dendritic cell vaccination and interferon in August. I feel like crap, exhausted. I continue working full time and right before Christmas, on December 18th 2009 the week I get tenure I am told I have a distant metastasis. I have a photo taken with the kids that Christmas in Geneva. I was feeling numb that day. I could see no future. On the 7 hours drive back home to Brussels I cried hiding from my two boys, 3 and 8. Yet the moment I crossed the door of our house I knew I had chosen to live.
I come back to my fantastic medical team (oncologist, dermatologist, and surgeon in 3 different hospitals in Brussels) and things go quickly from there on. The words “systemic’, “low tumour burden”, and “targeted therapies” enter. I google this time knowing what I want, I feel empowered. My oncologist can only offer chemo (5-13% response). I have by now found the US based melanoma international foundation. We are not exchanging cookie recipes on this forum but trial information. I find a trial with a new targeted therapy PLX4032 in Paris. Not even my oncologist could find this from the company who is running the trial. I have surgery taking out 5 small tumours end of January and my surgeon gives me the good news: I carry the BRAF V 600 mutation. The same week PLX 4032 (anti BRAF therapy) is on the front page on the New York Times 3 days in a row I am at war with my health insurance because they do not want to give me the E112 form to get access to the PLX4032 trial in Paris. I am literally on “fight” mode when I stumble on the webpage of ECPC. They want to hear from patients stories related to “Cross-border health”. My eyes and ears are wide open as I bulldoze and fight with their support to get the right to go to Paris (I also get support from my medical teams, many patient associations and individual patients who are like the Robin Hoods of cancer, my university and colleagues, lawyers, and a story on the national “LE SOIR” among others). We win.
Bitter sweet victory. This was by far the most eye opening experience of my life. What if I had not been asymptomatic and feeling 100% physically? what if I had not had the education that allowed me to digest the information in different languages quickly and react to it? what if I had not dared contact all the people I did? what if I had not known the people I did?
A few days later I met a person in one of my “what ifs?” Quentin was like me, a melanoma young patient with two young kids. He was under morphine and with a heavy tumour burden having failed everything else. He did not have time. I found out the same week I got accepted in the Paris trial he was refused in another targeted therapy trial because he was told obtaining the form E112 would be too hard and they had already refused other Belgian patients that week. Luckily he was accepted in the very same trial in the US (see Quentin´s story), and he is alive today.
My personal victory was short too. I entered the trial in Paris knowing perfectly well it was a phase 3 randomized non-blind trial comparing PLX4032 (showing up to 60-70% responses) with standard treatment of care = chemo (with 5-13% responses). In the patient forums we were all asking each other whether we got “the good arm” of the trial. Patients clearly saying that if they were to get “the bad arm”, they would leave the trial. I got randomized and got the “bad arm”. Luckily for me the tumours were at that stage “too small” to have as measurable target, so I was able to leave the study. As a psychologist I thought, how can they design such a study? Have they not heard that just like placebo effect you can create nocebo effect? The design of the study just seemed psychologically cruel and unethical. I found out later that in fact in cases like this where there is no “standard treatment of care” (as is the case in other rare cancers), patients are allowed to cross-arms if their disease progresses, or they create another compassionate phase II trial for patients having progression. Solutions exists, yet as I write this there are new phase 3 trials coming up for melanoma with the very same design, non-blind randomized chemo vs new drug that has show strong responses…
In this path too I stumbled upon other issues like attempting to access an international trial in the UK testing an innovative cancer vaccine that is showing response but I was told: “it was only accessible to UK citizens”. How can this be? Is the UK not part of Europe?
As my path of cancer survival continues, and just before trying to join the next trial, I have finally decided to put down my suitcase and have started to take out things. I am meeting other survivors, but also passionate people who work behind the political scenes on health (nationally and at the EU level), people in the pharmaceutical industry who care, and doctors and other health professionals engaged actively in the survival of their patients. What is energizing is to realize that in fact many of the existing hurdles confronted by cancer patients and by other cancer “stakeholders” in Europe exist because we have simply forgotten WHY. Sometimes in cancer world it seems indeed that efforts from politicians, pharma industry and even doctors are focussed on HOW, how to reduce the burden on cancer costs, how to find blockbuster drugs faster and bring them to the market quicker, how to enhance Overall Survival not matter what, how to take out the next tumour out... If the main concerned – US the patients - are recognized at the centre of the debates and are actually communicated with, we might all just remember WHY…
Patricia
I was born in El Salvador and migrated to Australia with my family at 18 to run away from the civil war. I migrated again, this time willingly to pursue a PhD in psychology at the University of Geneva and again to do a postdoc in California (UCSB and Stanford). I moved again, now with two kids, to settle as a professor in management at the prestigious Solvay Business School at the Université Libre de Bruxelles. We bought a house. I always felt I had my suitcase next to the door ready to leave…I had to admit that for the first time I had everything to put the suitcase down and simply “be happy”.
In May 2008, precisely on “Euro melanoma” day I got a phone call from the local dermatologist telling me the mole he had taken out was melanoma. He added quickly “thin” and “probably would be fine”, he gave me some statistics…but I was already cold and not listening. I had the first surgery and sentinel node biopsy which placed me at a comfortable stage 1b. I googled melanoma up and felt like vomiting. I searched the dermatologists´ eyes for cues…but I was getting the “standard” follow-up, “do not worry”. I worried. At my second 3 monthly follow up the radiologist saw a node under my arm that “we should keep an eye on”. A month later I insisted to get it checked. And 2 months later, many nodes had grown. Fast forward to March 2009 a lymphadectomy: 25/45 lymphnodes taken out have melanoma. I do radiotherapy, meet my oncologist and start my first trial with dendritic cell vaccination and interferon in August. I feel like crap, exhausted. I continue working full time and right before Christmas, on December 18th 2009 the week I get tenure I am told I have a distant metastasis. I have a photo taken with the kids that Christmas in Geneva. I was feeling numb that day. I could see no future. On the 7 hours drive back home to Brussels I cried hiding from my two boys, 3 and 8. Yet the moment I crossed the door of our house I knew I had chosen to live.
I come back to my fantastic medical team (oncologist, dermatologist, and surgeon in 3 different hospitals in Brussels) and things go quickly from there on. The words “systemic’, “low tumour burden”, and “targeted therapies” enter. I google this time knowing what I want, I feel empowered. My oncologist can only offer chemo (5-13% response). I have by now found the US based melanoma international foundation. We are not exchanging cookie recipes on this forum but trial information. I find a trial with a new targeted therapy PLX4032 in Paris. Not even my oncologist could find this from the company who is running the trial. I have surgery taking out 5 small tumours end of January and my surgeon gives me the good news: I carry the BRAF V 600 mutation. The same week PLX 4032 (anti BRAF therapy) is on the front page on the New York Times 3 days in a row I am at war with my health insurance because they do not want to give me the E112 form to get access to the PLX4032 trial in Paris. I am literally on “fight” mode when I stumble on the webpage of ECPC. They want to hear from patients stories related to “Cross-border health”. My eyes and ears are wide open as I bulldoze and fight with their support to get the right to go to Paris (I also get support from my medical teams, many patient associations and individual patients who are like the Robin Hoods of cancer, my university and colleagues, lawyers, and a story on the national “LE SOIR” among others). We win.
Bitter sweet victory. This was by far the most eye opening experience of my life. What if I had not been asymptomatic and feeling 100% physically? what if I had not had the education that allowed me to digest the information in different languages quickly and react to it? what if I had not dared contact all the people I did? what if I had not known the people I did?
A few days later I met a person in one of my “what ifs?” Quentin was like me, a melanoma young patient with two young kids. He was under morphine and with a heavy tumour burden having failed everything else. He did not have time. I found out the same week I got accepted in the Paris trial he was refused in another targeted therapy trial because he was told obtaining the form E112 would be too hard and they had already refused other Belgian patients that week. Luckily he was accepted in the very same trial in the US (see Quentin´s story), and he is alive today.
My personal victory was short too. I entered the trial in Paris knowing perfectly well it was a phase 3 randomized non-blind trial comparing PLX4032 (showing up to 60-70% responses) with standard treatment of care = chemo (with 5-13% responses). In the patient forums we were all asking each other whether we got “the good arm” of the trial. Patients clearly saying that if they were to get “the bad arm”, they would leave the trial. I got randomized and got the “bad arm”. Luckily for me the tumours were at that stage “too small” to have as measurable target, so I was able to leave the study. As a psychologist I thought, how can they design such a study? Have they not heard that just like placebo effect you can create nocebo effect? The design of the study just seemed psychologically cruel and unethical. I found out later that in fact in cases like this where there is no “standard treatment of care” (as is the case in other rare cancers), patients are allowed to cross-arms if their disease progresses, or they create another compassionate phase II trial for patients having progression. Solutions exists, yet as I write this there are new phase 3 trials coming up for melanoma with the very same design, non-blind randomized chemo vs new drug that has show strong responses…
In this path too I stumbled upon other issues like attempting to access an international trial in the UK testing an innovative cancer vaccine that is showing response but I was told: “it was only accessible to UK citizens”. How can this be? Is the UK not part of Europe?
As my path of cancer survival continues, and just before trying to join the next trial, I have finally decided to put down my suitcase and have started to take out things. I am meeting other survivors, but also passionate people who work behind the political scenes on health (nationally and at the EU level), people in the pharmaceutical industry who care, and doctors and other health professionals engaged actively in the survival of their patients. What is energizing is to realize that in fact many of the existing hurdles confronted by cancer patients and by other cancer “stakeholders” in Europe exist because we have simply forgotten WHY. Sometimes in cancer world it seems indeed that efforts from politicians, pharma industry and even doctors are focussed on HOW, how to reduce the burden on cancer costs, how to find blockbuster drugs faster and bring them to the market quicker, how to enhance Overall Survival not matter what, how to take out the next tumour out... If the main concerned – US the patients - are recognized at the centre of the debates and are actually communicated with, we might all just remember WHY…
Patricia
Subscribe to:
Posts (Atom)