New Clinical Trial: for EBV positive tumors.

(If you wish to continue to read this blog, once it turns private next month, click: here.)

As of recent (the last ten years), Baylor Hospital College of Medicine in Houston, Texas has been creating a clinical trial as a vaccine for Hodgkins patients (especially relapsed and refractory) for those who have tumors that are EBV positive. I believe, after research, and watching a few other warriors go through this vaccine who are EBV positive (we carry a virus, in our immune system that is the causation for mono), that this is a major key component to some of us who have very, very stubborn disease.  Dr. Bollard, who is in charge of this study down in the heart of Texas explains the process much better than I do.

So, I am copying and pasting her email to potential patients for those of you who have refractory/relapsed HL.  Believe it or not, there are two different arms of this study (one for those who have relapsed and are in current remission, and those who still have disease). So whether you are in remission (like me right now!) or are currently on clinical trials. You should definitely get your tumor block tested for EBV positive tumors. This can be done by contacting Dr. Bollard, and sending her your tumor block.  The process of this trial takes about 4-5 months, in October, I was lucky enough to start -- and now the infusion I will receive is ready, and I will receive it once we receive the results of my next PET/CT scan on February 17th.  Either way, if I am in remission or not -- we have a plan.

Here is the email to potential candidates for this trial: please, please consider it if you have relapsed, and get your tumor tested for the EBV virus.  This trial has had phenomenal results, and it is more of a vaccine opposed to 'treatment' or chemo.

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Thank you for you interest in our T cell studies for EBV lymphoma. Our current protocol uses autologous LMP1 and 2-specific Cytotoxic (killer) T cells (CTL) either as therapy for relapsed EBV+ve Hodgkin Disease (HD) or non Hodgkin's Lymphoma (NHL) or as adjuvant therapy after autologous OR allogeneic transplant.

In our previous studies, we successfully generated EBV-specific CTL in patients with EBV-positive Hodgkin's lymphoma (Roskrow et al, 1998 and Bollard et al 2004 J Exp Med). However, only very small percentages if any of them were LMP2A- (or tumor)-specific. These small populations of LMP2A-specific CTL did however induce complete remissions in some patients but we were unable to eliminate the EBV-positive Hodgkin's lymphoma in patients with bulky disease. In patients who received the CTL as adjuvant therapy post autologous stem cell transplant all remain in complete remission over 7 years later. In patients with bulky disease it is possible that LMP-specific CTL have good killing ability in these patients but that their low frequency precludes effective tumor elimination. We therefore went on to expand LMP2A-specific CTL in the laboratory in large numbers from patients with relapsed lymphoma and treated 30 patients on this protocol and saw complete clinical responses in 80% patients with active EBV+ve Lymphoma. Only one patient who was in remission at the time of CTL has progressed with the rest remaining in remission over 5 years. We have now started 2 new protocols generating T cells specific for both LMP1 and LMP2 (LMP1 and 2 specific CTL). LMP1 and LMP2 are the EBV proteins present in about 20% of patients with Hodgkin disease and NHL and these T cells that we grow from the patients in the laboratory should recognize and kill tumors positive for EBV.  We have not seen any toxicity with these studies but they work best in patients with relatively minimal disease.

If you are interested in this study the first thing to do is to send me a copy of your pathology report confirming EBV positivity of your tumor. This can be emailed to me or faxed to me at 832-825-4732.

The other issue is that the entire CTL production process can take 3-4 months depending on the patient so we would want to collect blood at the earliest point possible to initiate the EBV-transformed B cell line (LCL) which we use as the antigen presenting cells. Ideally we will first collect your blood, the nurse practictioner  will contact you to get your details and send a (blood) kit to you. Once you have the kit with the blood tubes and the consent form and the donor questionnaire I will call you to get the phone consent to draw the blood.

You would have to sign a consent form to consent to the procurement part of the study (i.e. giving us permission to make the CTL lines) only. You would have to donate approximately 60mls of blood on two separate occasions. As I said above, the consent can be obtained on the phone and the blood can be shipped to us. If it is possible to grow T cells (CTL) from you - once they are made and if you were eligible after autologous stem cell transplant and wanted to participate then you would have to come to Houston twice to receive the T cell infusions.


Kindest regards,

Catherine Bollard,MD
Associate Professor
Texas Children's Cancer Center,
Baylor College of Medicine
6621 Fannin Street, MC3-3320,
Houston, Texas 77030
phone:1-832-824-4781
fax:1-832-825-4732
Email: cmbollar@texaschildrenshospital.org

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Please look into this study warriors! I personally know two individuals (one who has continued remission for over four plus years), that this has been successful for.  It's this new stuff on the horizon that makes me hopeful!

Sending love and light,
B!

So this is the new year...

I am never big on new years resolutions, for me -- I like to think I should keep chipping away at my good qualities, or ones that better myself, and let the poorer ones fall by the wayside.  So here are ones I hope to enhance this year :)

 .Resolutions.

Get Strong(er)!: Physically, and especially emotionally.

Allow myself to be giddy: grateful, proud, appreciative for the little things.

(especially, be more proud of my accomplishments)

Laugh more. The more I realize I laugh, the less I cry over the pain of the world. Being silly and goofy makes me more relaxed, calm, and is a side of me I've missed for a really long time. 

Luckily, it's coming back :)

Smile more. for everything that I have been through (and survived) and for everything that I will go through. I am so grateful to be here and have each one of you in my life; therefore, 

I should show it!

So there you have it loves!
I have a feeling 2011 will be an amazing year -- I mean, starting out with a remission, I don't see how it couldn't be :)

The invites to the blog will be sent out (hopefully) by the end of the month. I'm a bit behind, as I've enjoyed all of my travels this month from Greece, to New England, and the lovely Pennsylvania Mountains.

So, if you wish to continue reading this blog once it goes private, again.
Please: click here and follow these directions. Happy New Year all!

xoxo,
B!

Milestones.

If I could change the world, and pieces of our society... it would be our praise towards one another.  So often in our world we are critiqued, criticized, or told what is incorrect, hurtful, or wrong to one another and especially ourselves.  We are hard on ourselves as individuals, we over analyze our actions, sometimes even belittle ourselves.  Yet, this is recognized as normal in our society.  "I didn't do a good enough job," "I could do better," "I failed... I failed... I failed." It is natural for most people in our society to focus on the negative, or what we are/were unable to achieve instead what we DID achieve; however, when we praise each other for the good, sweet, beautiful things in each others lives, or even recognize it in ourselves... if we congratulate each other on small moments, or say "I love you," for no reason at all.  We are held in question.

This is the part of the world I wish I could change. If we say something along the lines of "I know I'm amazing!" "I know I'm strong," we are seen as cocky or full of ourselves, when in reality? It is just an acknowledgment that we are pretty wonderful -- because we are. Believe it or not. We totally are.  You included.

So one of the few things that I love, and hope to continue to do however fast, sick, or insane my life maybe is to recognize not only myself but those around me.  The people I surround myself with, truly lift me higher.  And with this being one of the most devastating years I have lived, it has also been my most resilient -- in the light of adversity, my family (which includes my close friends) rallied. They rallied so hard that instead of discussing funeral arrangements during the holidays this year, I am reminiscing about my moments hiking through the mountains of Athens, in Greece.

They rallied. for me. They rallied when I pushed them away, when I was impossible... when in my darkest moments there was no light to be seen. They rallied when treatment after treatment this year, I lost pound after pound, plummeting down to a bit under ninety pounds. They rallied when I lost people I loved, and I expressed that I thought I was next. They rallied when I told some, explicitly, that I no longer wanted them in my life (yet, they stood stoic, over and over again, until my light returned, and I returned to them). They rallied, and stood tall through my tears, my defeats, the loss of Boston, the loss of school, the loss of another past life. They rallied. And if you are reading this -- you did as well, because the support I gain from all of you, each one of you, is another reason why I am here.

I am here, because the people in my life are amazing. I am here because I gain strength from all of their lights.  In turn, one of the most beautiful things that occur in my life as well... is that I get to pay this forward. I receive e-mail after e-mail from others in the cancer community, or individuals facing illness who read this blog and in turn know that if I went through hell -- they can too.

It's important for us to recognize the good, the beautiful, when we triumph, the positives no matter how small or insignificant they may be. So, now as most of us reflect on 2010.  Here are my milestones that I wish to share with you.

Milestones

• Transferred/Accepted into another grad program in Philly. Not only completed classes, but received a 4.0, and a great love for individuals in my group therapy class. 

• First remission in three years. 

• Holy weight gain. 90lbs to 120lbs today :) The comparison is frightening.  And honestly, these pictures are a little hard to look at -- but, they make the point to other people who are facing illness, that you CAN come back. I promise you, if I looked like this only a few months ago...

Six months ago: 

 

opposed to, today:

 

 

• If you know me well enough, I have been talking about traveling to Greece since my sophomore year of college after taking an Art History class and learning about greek culture/history -- I can finally cross that off my bucket list, and now am even more in love with traveling then I was before. The travel bug has bit me, and I have no intention of holding back with Ireland, Scotland, Australia on the list -- and a revisit to Greece, with additional trips to Israel and Turkey. Don't ask me how financially I will do this -- but it will be done.   

•  Last year, I could hardly walk to the bathroom, let alone even think of hiking a mountain. Last week, traveling through Greece my friends and I had the incredible opportunity to sight-see, visit the islands, but also walk (a ton since the entire metro system in Greece was on strike). The trip kicked my butt, but in an amazing, amazing way.  From Mt. Yeserdes, to Delphi to the Acropolis, to Falapalos Hill -- these are the moments I hold close to my heart knowing, that my body is not only back, but able to walk 10+ miles a day, and LOVE it.

• Although this is pretty personal, I feel the need to share this with other young women facing cancer treatment -- Aunt Flow, after three years, decided to make a come back as well. Who knows what this will entail for future fertility or hormones, but god damn, it is good to feel like a woman again.  

• Zero, I repeat. I am on zero medications. From being on fluids last year for months at a time, hospitalization after hospitalization, discussion of what I would like at my funeral, taking twenty plus pills a day. Tubes coming out of my chest at all hours of the day. To now look back, and enjoy my morning cup of coffee and a vitamin a day instead of the trials of several medications from cancer treatments, side effects, insomnia, depression, neuropathy and the list goes on... I am grateful, and thankful to have a point of detox and not be on any medication at all.

• Nearing the end of course work. Between many treatments, two different grad programs, lots of classes/internships. Next semester I am putting away my final load of courses, then starting in May (2011) I will begin my LAST full time internship (that will extend to the following May 2012). Soon, this 60 credit degree with licensure will actually be a reality, after chipping away at it for three years. 

These are the pieces of me that are intact, and I am so grateful for all of them, however short or long-lived they may be. And as we venture into 2011, I invite you to be proud of your own accomplishments and milestones from this year. Attempt to look at yourself with a positive lens, and instead of focusing on the goals or relationships you were unable to fulfill -- focus on the ones that you've accomplished.


In addition, this will be one of the last public posts of this blog. If you wish to continue reading my progress, or researching different treatments on here, or just wish to follow for no reason at all (because that is okay too!), Please click here, and follow the directions. After February you will be unable to publicly view this blog, as it will be set to private. 

Wishing all of you a wonderful, reflective, new year.
Sending Love,
B

Drink it up love, drink it up...

One of the major lessons I've learned about this disease and how it affects my every-day living is that I am incredibly sensitive with my feelings.  Meaning, when I am sad, I feel it, I taste it, I experience it. However, when I am happy, I glow. It's heartbreaking yet overwhelmingly wonderful.  And when I am in a wonderful place, I love to pay it forward, pass it on, and share it with those who have been in my corner during the lows of my life.

This sensitivity is a double edged sword, but I can tell you there are times when I am bursting at the seams with pure love and happiness. When the love and beauty I'm surrounded by are so intense in my heart -- I truly feel that I want to cry (and sometimes I do). Cry in a way, that each tear represents how appreciative, grateful, and amazing my life is at that small moment.  It is incredibly hard to articulate, but lately... I am experiencing these highs from my remission, my trip to greece, and now to the first holiday season in over four years without any disease.  At this moment, I could not ask for anything more and want my celebrations to be all of yours -- I am breathing in so much happiness, love, and support and exhaling beauty. A beauty that I hope all of you are able to experience too. To live in this moment of 'wonderful,' with me.  However short-lived it may be.

Life could not be any sweeter. So here, I want to share with you my life-changing trip to Greece. Words and even the pictures can not justify what happened in these ten days with four of my favorite people in the entire world.  A trip, when I talk about it or think of it... only creates the happiest of tears and the sweetest of smiles. And, without all of your support -- would have never happened.

These pictures are my gift to all of you this holiday season..
_______

We are never the same once we see the sun set on the other side of the world....'

From the Acropolis, to the Temples of Athena, Posidion, Heresedes, Zeus the Parthenon, the New Acropolis Museum, Hiking up mountains, Spending time in the Agora, Bath Water Tower, Delphi (foundation of the oracle, thoughts, philosophy and questions of life) Falapalos Hill, Pistachio Factories, Market Places, Plaka Square and other tavernas, The beautiful Islands, Sunsets all over, and Cape Sounion Beach. We had the time of our lives. We took over 2500 pictures, these are only from my camera -- however they are 100 of my absolute favorite moments/shots of the trip :)

Sending all of my love to all of you this holiday season,

b.