Two thumbs up for Revlimid

Yesterday we received scan results after being treated with Revlimid for two months...

With two thumbs up from Dr. O'connor and my wonderful partner, we were all excited to hear that the Revlimid is not only working, but it is working quickly, and very well against my tumors.   All of my nodes have decreased significant amounts.  None of them are 'stable' or have 'mixed' results.  For the first time in a while, everything is decreasing from starting with 3-4 cm nodes before treatment, to now only having nodes between .5 and 1.8 cms.  And for those taking note, my SED rate is down to 15 (hot damn, it's in normal healthy range). We are absolutely thrilled. And although there has been a lot of loss lately in the HL community and on the east coast, we take this small kernel of good news and are running with it...

Revlimid is suppose to be a slow-acting drug on 20mgs.  So all of us were a bit surprised that there was such a dramatic decrease since I was treated with 10mgs over a period of two months. Thankfully, almost all of my side effects have subsided and I am now tolerating the drug much better, except for some neuropathy and fatigue.  Due to these factors, O'connor believes this will be a very positive drug for my future.  

After the last six months, it finally feels like we are leaving behind the roller coaster of unknowns and are approaching stability and some form of normalcy again.  It hasn't quite sunk in yet, but we will take it. 

Here's to being on the other side of things!

Sending so much love to all of you,

B. 

Goodbye 2011, Hello 2012!

Two Thousand and eleven has been an incredible, incredible year -- and thankfully it is ending in an amazing way.  A week ago my PET/CT scan revealed stable disease, and I could NOT have asked for better results.  This concludes that the Texas Refractory Arm (EBV+ Trial) IS working! Which we are all very excited about.

At this point, I will receive the infusion once ever 6-8 weeks (this will be my decision) and then scan every 12 weeks. Which means, I will fly to Texas a lot over the next six months but it will definitely be worth it.  Speaking of Texas, I wanted to apologize for not posting this sooner AND thank the numerous donors from the first few rounds of treatment, without all of you I would not have been able to fly, pay for lodging, or eat in Texas, and I thank each of you from the bottom of my heart.

Thank you SO SO much to: Ms. Lisa Herlihy, Ms. Tywyn Daniels, Ms. Karen Regan, Ms. Judy Kilty, Teri Krieger, Ms. Carrie Witting & Mr. Andrew Lewis, Ms. Alyson Weissman, Mr. John Marco, Ms. Jenna Jezierski & Mr. Ajay Siekierski, Ms. Barbara Chambers, Ms. Katy Cooper, Mr. James OHair, Ms. Alannah DiBona, Ms. Courtney Forsberg, Ms. Linda F. Davidson, Mr. Chris Carr, Ms. Michelle McDonald, Ms. Eve Braley, Ms. Jussara Berry, Ms. Caitlyn Gable, Ms. Ruth Hendry, Ms. Tianna McCormick, Ms. Jessie Oettinger, Ms. Jessica Smarsch, Ms. Karen Tully, my uncle and my lovely brother.  For those who donated five dollars or more -- thank you, thank you, thank you!

And with that, I will once again be going down to Texas for my next infusion mid to late January, and therefore, will obviously need a bit more help.  So if you are able at all to open your hearts and donate to the 'Houston Treatment Donations' on the right side of the screen through paypal I will be forever, forever, in debt to each of you. Just click on the donate button and you're able to donate ANY amount, this can be 1 dollar, or anything more!

We are also desperately looking for ANYONE with frequent flyer miles that would be willing to donate to my flights from PHL>TX and back, so I can get to my treatment this month.  If you have any available miles and would like to donate, please, please email me at: RebekahFurey@mac.com

Again, without all of the donors, and good friends, I would never even begin to be able to receive this form of treatment -- a treatment that is actually working! So again, thank you.

Although life is good, healthy, and normal over here.  I wanted to take a moment to honor and send peace to the Reed Family who is dealing with the incredible loss of Mike Reed, a fellow refractory hedger who fought for twelve years and is one of the refractory folks community most honored, respected, and loving pioneers of the cancer community.  I encourage you, your friends and family to take a moment and send love to the Reed family, to wife April, and baby Trent.  Therefore I encourage you to stop by Mike's CaringBridge Site and send a message to April and Mike's family.

You can visit and leave them a message by clicking here.

There are never any words that justify the loss of a great man like Mike; therefore, those who are refractory continue to follow his footsteps, and those who knew Mike and his family I know will continue to treat the world and the people they love around them, just as Mike has: with grace, patience, kindness, respect and love.

Sending you love and strength Reeds, we are thinking of you constantly.

As the close of 2011 approaches, I feel grateful that I have met such souls as Mike, and so many others we have lost this year, and those who continue to live with this disease.   Although there have been some small bumps in the road these last few months, it has been a pretty wonderful year and I am thankful that I get to close off 2011 with a partner I adore, a family who continues to be supportive, friends who never leave my side, and a future worth planning.

To each and every one of you, I wish you love and a wonderful New Years Eve :) 

And so does Ms. Zooey Deshanel and Mr. Joseph Gordon...

Sending all of you the happiest of holiday wishes,

the best for this new year,

and of course, love, peace and strength to the Reed's. 

xoxo,
B.

One of the Lucky Ones

Life has been full of smiles as of late.  We've received notice from Texas that my second round of the EBV+ Trial with the arm for relapsed and refractory patients is ready for me!  I will be receiving the first infusion on October 12th and then my second the October 26th.  

So, a favor to any of you who are able: We are scrambling a bit financially in regards to the flights, as the infusions are coming up.  Ideally, we'd love to have my partner to go with me as I'll be flying in and out of TX in one day and the pre-meds cause a bit of whooziness.  But for now, we're looking for flights just from PHL to Houston, TX, just for me.  So although I hate to ask for any bit of charity, if you know of any charities, or anyone willing to use frequent flier miles to help out this cancer patient, let me know! If you'd like to chip in just a few dollars you can always donate to the paypal account listed on the screen. (If you would like to donate your miles in any way, on either date, for myself or my partner, please email me at: RebekahFurey@mac.com so we could possibly discuss details) We obviously would be forever in debt to anyone who could help us, and thank you in advance for just reading this small paragraph.  

But on to to the good stuff! My ESR/SED rate remains unchanged this week, it is holding in the 40's, and we are thrilled about that. My weight continues to fluctuate between 126-128lbs, I am hoping as I contiue to gain now it is due to muscle mass! :) And the last piece of wonderful news is that since the infusions in TX are ready to go, we will scan 8 weeks post the second infusion.  This means that I will receive a PET/CT scan sometime during December, which will be the longest period of time my body has ever had time off from a scan since 2006 (pretty cool if you ask me).  If I begin to have any symptoms, drop weight, or my ESR sky rockets we will move the scan date closer.  However, O'conner says there is no need for a check-up since Dr. Bollard down in TX will be seeing me, and we can follow the EBV trial protocol-schedule of scan dates.

All in all, this is wonderful, wonderful news.  I will have the entire semester off from toxic-treatment (unless anything pops up on the radar), and we are giving Texas a second go and hoping this arm of the trial will do some damage to those pesky cancer cells. In the midst of my last year of graduate school, new cancer treatments/vaccines, and just life in general I can easily say that I am honestly one of the lucky ones, and life could not be more sweet these days.  As always, I thank all of you for your comfort, support and love and I hope you're all enjoying the change of seasons and life as much as I am these days.

As always, sending each and every one of you tons and tons of love & light :)

xoxo,
B.

Celebration-Rollercoaster

Two weeks ago my lovely entourage and I (my mothers: Darlene and Diane, and my partner: Rich) took the trip to NYU for my PET/CT scan to determine if this EBV positive trial was/is working that I received down in Texas.

At the time of the scan a few hiccups occurred: 1) O'conner was out of the office  2) my veins refused to cooperate during the CT scan, and only a PET scan was given during this time.  Therefore, we were a bit unsure about the results.  When I looked over the scan there was progression, but very minimial, and we only had the PET scan to go off of for information -- never a good thing for a refractory hodger, especially since this EBV trial is known to cause inflammation due to the killer T-cells that attack my tumors.

So, for two weeks my oncologist teams (O'conner, Zain, Bollard) discussed what should be done.  Yesterday, my entourage and I met up again, with O'conner returning from his travels and all doctors giving their two cents.  I was prepared to start Revlamid, or hop back on a previous treatment (SAHA) due to the fact that there was progression; however, my team had a different thought process.

O'conner's team is one of my favorites because they always see their refractory patients in the BIG PICTURE.  They take into account how the patient is feeling, their symptoms, their blood counts, and then the numbers on the pages of scans.  In three out of four areas I was excelling beyond all expectations.  My blood counts are the highest they've been in five years. I haven't held onto weight like this since before my diagnosis, and I feel on TOP of the world these days with energy.  And when you see me in person, there is no denying that -- and O'conners team has been sitting court-side.

So, after a quick run down we all decided that the best thing to do would be to milk this oh-so-good-feeling, out for as long as humanely possible.  On top of that, we really haven't given the EBV+ vaccine the best shot in the world, and we are looking to possibly do a second infusion in the next two months (if my next round is ready down in Texas).  Therefore, the conclusion is to wait and not receive any toxic treatment.

After the news two weeks ago, I feel as though these last scans from relapse to this recent visit has been an incredible rollercoaster of the unknown.  Is there disease? Is there not? Is that inflammation? Is the treatment working? Wait, if we have progression, why aren't you treating it? Without a CT, is that really progression? There are so many questions, and a lot of people take time and energy analyzing all of it, but this is where I get to step back and let all of those questions fall by the way side.  Sometimes, we don't need all of the answers.  Sometimes, it's okay to enjoy the unknown if we feel good.  And that is what I plan to do.

If you are going to tell a Refractory Hodger that they do not need to receive treatment for 2-3 more months, THAT is a celebration, whether there are 5 questions or 500, the conclusion is the same.  We will wait, I will enjoy this time without treatment, and we celebrate in the fact that I have almost a whole semester without having to worry about treatment.  It is something to cherish.

It has taken time and experience to enjoy these periods without anxiety ridden thoughts.  As others may have anxiety over: is the disease is growing or not, or question if a day of fatigue is because of cancer or just because it is too much.  But here, in our neck of the woods you will find me and my lovely entourage basking in the glory of this 'wait and watch period' without treatment, and enjoying every single moment of these non-treatment days... for as long as we can.

From now till november we will track my ESR levels, and meet with O'conner in two more months as a check-in to reassess.  But in the mean time -- we celebrate!

Love and light to all of you my loves,

B!

Inside the mind

If you sat down with one hundred cancer patients I can garentee you they would all agree with a similar emotion when it comes to the days approaching a PET/CT scan...

we feel crazy.

In truth, the days or sometimes even weeks before scan time can create the most anxiety-ridden, insane thought process of even the most logical and rational individuals out there.  Although I find myself fairly well-balanced emotionally, I am no different from those who jump off the deep end and belly flop into the insanity pool, sometimes even taking observers with me. 

Whether you live in three month incremental scans, as I do, or once a year the emotions and turmoil that occur inside the mind of a cancer patient can be difficult to understand.  A reason, I felt the need to write this post.  Although I can not speak on behalf of all cancer patients, I can tell you that the days before and after a scan are my most unstable and inconsistent in my mind, soul, and identity.  In turn, these are the things that happen:

1) Thinkers (such as myself) tend to over-analyze during these days.  I find myself not only thinking of what the scan may reveal but how A) my family will react, B) my partner will react C) my friends will react and D) how my school/work enviornment will react.  I  take it a step further but think of the outcomes -- if it is a good scan: how will I feel (where major survivors guilt comes into play) if it is a poor scan: what are my options?  I think about the latest research, what friend of mine is on what trial and is it available on the east coast, where I will fit in different treatments, and what toxicity level am I willing to endure this time around.  I also contemplate: how should I spin this story so everyone will feel okay with my results and be confident that I will be fine?  Without even knowing the results my brain will go into a tail spin and all confidence of a semi-normal life and a future appears it can be ripped away with in an instant, and the stable rug I have been standing on the last six months will be taken out from under me.  It is mentally exhausting and emotionally draining and it's hard.  But these are things that I need to think about to prepare for what is to come.

2) Putting up walls.  During the week before and after scans I tend to emotionally isolate myself (and others) for protection.  For many reasons.  Reasons due to not wanting to answer how I feel or what I think the scan will be -- because especially during this week, I have no clue.  Questions regarding what my next steps will be (because without knowing how big or small the cancer is, I can't tell you yet).  Protection from normalcy.  During scan time is the week before or after that I truly recognize I am not a normal twenty-seven year old, when placed in a normal scene at a bar, party, or even just having coffee with friends I compare -- and it is awful.  I think of how different my life is and although I attempt with all my might not to throw a small pity party, I recognize that here I am after five years of treatment, mentally hoping that I do not have to receive more toxic chemo.  Because, although I can accept this life and live it well, and although it all makes me stronger, it would be nice not to have toxic drugs flow through my veins for the rest of my life.  Therefore, walls go up.

In addition, I try to pull myself away from social situations and want to reflect and probably become a bit too introspective.  Promised phone calls and social dates are usually canceled last minute with lots of apologies later, and I tend to crawl into my safe shell for a matter of days.  But, those that come near me, or push too hard emotionally the week before or after (which are usually the ones I care for the most) are the ones that tend to crack this shell and watch frustration, sadness or disappointment pour out of me.  I attempt to keep these walls up for a reason, I am vulnerable, I am a bit crazy, and still waters run very deep during this time.  To be pushed or prodded, even if it is something unrelated to cancer can result in destruction.  With most individuals, we tend to act out or (unintentionally) hurt those we love the most because we feel safe with them.  We can yell, scream, and lash out because we know they are loyal, loving, family and friends that get it.  But, it still does not make it better, easier, or acceptable.  I am well-known for these moments during close proximity to my scans, and I always feel terrible at the end of these two or three weeks when all is said and done, so therefore, walls are needed.  No matter how much friends and family say 'it is okay... to break down, or let go...' it is never easy, and along with the emotional drain from my own experiences I tend to feel guilty for expresssing myself in an inappropriate way afterward.  Unfortunately, it is not healthy for either party -- but sometimes, you do what you have to do to get through, you do the best you can do and sometimes that has to be enough.  I am lucky that those around me understand this dynamic, and hope if you are a caregiver you understand that sometimes this is how cancer warriors tend to think, this is how we survive.

3) Lastly and most importantly is that vulnerability is a huge component during scan-time. During these days of introspection the things I think about the most are my relationships.  I carefully go through mental photographs in my mind of my best friends, my partner, my past relationships, family and how much I care for each of them.  I find myself during these days thinking of specific people who are close to me that I could not imagine living without, in the car driving, or cooking, and all of a sudden as if a small emotional button was softly pushed tears of love will come pouring out.  I find myself listening to a certain song on a long drive and thinking about an individual: have I told them I love them this week? What could I send them in the mail? I wish I could show them how much I deeply and truly care for them without them thinking "There goes Bekah again...  being deep again... " Scan time is a horrible mix of vulnerability and protection, thoughts of what more I can do in my relationships and friendships circulate, and just like a carousel I end up going around, jumping from one person to another in my mind hoping they know how much they mean to me, and how grateful I am to have them in my life, and how amazing I think they are as an individual.  And, at the end of most days I am so overwhelmed not only by my thoughts but the knowledge that I am surrounded by so much love that I always think: how the hell did I get so lucky? 

[Annual Furey-Cousin Beach Photo]

Because I am -- so incredibly lucky for those who choose to be in my life.

As you can see all of these conflicting, raw, and vulnerable thoughts can continue on for days or even weeks at a time depending on who you speak to.  I am fortunate that I have narrowed these moments down to a week before and after my scans; but, none of this is easy.   I would never wish anyone to understand these days -- because to do that you would have to experience cancer yourself; however, I hope these words at least offer some guidance and insight inside the mind of other warriors and  myself.

In turn, it is during these days (leading up to my scan this Thursday the 18th) that I want to thank those who support, comfort, and allow me to be crazy, knowing that I will resurface to normalcy soon.  It is because of these individuals who see my tears of pain that coincidentally also cause tears of gratitude during my long drives on summer afternoons in the days leading up to that inevitable scan.

Love and Light,
B.

Check, Check & Double Check.

Houston infusions/EBV positive vaccine: Check
Last summer class this week: Check
Freckles!: Check :)
Sun kissed in all the right spots, and enjoying Kayaking, Hiking and Beaching this summer: Check
Enjoying life before the dreaded scan on August 18th to see what is happening inside my body: Check

Lots of smiles: double check!

Most likely I will come in and update a bit before PET/CT scan date from all the travels that happened over the last month, as well as the loss of our beloved Anne, and other fellow refractory kids that need our support. Although things have been a bit shaky with the Texas Trial, I've been sending out about 15 tubes of blood down to TX since the infusions for them to track markers, and considering -- I'm still feeling pretty damn good :) Luckily, I'll only have to do this for a few more weeks.

For now, I'm off to finish my final paper of the summer semester -- and then bask in the glory of 'summer' until I begin interning in Mid-August.

Happy Summer :)

B!

And just like dust, I rise.

There have been various reactions to the recent news of relapse, and I just wanted to write a bit before I head down to Texas to receive my EBV + Vaccine through Baylor College of Medicine in Houston.

(EBV+ Vaccine: on ClinicalTrials.gov: click here)

To be honest, after returning from friends in CT after Memorial Day weekend, I was in a definite 'funk' from receiving the news, letting it set in, and digesting it.  I don't want any other cancer warrior to think I am bubbly and optimistic twenty four seven even after receiving such disappointing news.  There is a huge difference between being 'happy' and being 'grateful.'  The gratefulness piece is always in me. Always.  However, it was tough to get out of bed the last few days and to look at the bright side of things when the reality that more treatment (if this vaccine doesn't do the job) will continue in the future.  I think it's important for those that are ill or receive hard news, that we are still gentle with ourselves.  In the beginning I used to repress these feelings and ignore them, realizing they would only come out later to bite me in the butt.  Now, if I feel down for a few days, I let myself.  Usually after a week or two, I find myself back on my feet again and moving.  I am no superwoman -- none of us are, so I believe its truly important to let yourself 'be' in these types of situations. 

Next, there have been a lot -- and I mean A LOT of people who are deeply disappointed and upset.  I do appreciate all of your words of support, emails, comments, phone calls and texts.  I still believe one of the main reasons I am still here is my network of close-knit family and friends and even strangers that shower me with kindess and love every opportunity that I'm in need.  But I want to assure you, that there are a lot of things we should be grateful for after receiving this news. 

So, beings another grateful list for you to view :)

• I feel incredible.  Emotionally, this is a huge hit.  But physically, I have NEVER in the last five years felt that I have so much energy, muscle, weight, and amazing health other than the cancer.  Everything else in my body is working like clock work, my counts are great -- basically normal, and this is something to be thankful for in all realms because if I need to face another four years of treatment or more again, I feel ready, physically. 

• I have not received any treatment since November.  Although I am heading down to Texas, this form of treatment is a vaccine, I am receiving back my own blood with a vaccine in it.  This is not chemotherapy, radiation, or anything toxic.  Most likely, since my next scan will be in September, I will not receive any further toxic treatment till October or even November.  This means I have just gone through one solid year without any form of treatment, a milestone if you asked me last year I never thought I would be able to accomplish or experience.  Having a solid year of 'nothing,' has strengthened my endurance, stamina, drive, body, and mind.  I am grateful for this year.  I am grateful for the break I had, as more clinical trials have opened as well.

• I have accomplished more in these last six months, then I'd say most would have :) I traveled with my three dear friends and brother to the most gorgeous place in the world -- Greece! And had the time of my life, I overloaded last semester and finished all of my coursework for this degree, transferred all of my classes and finished up incompletes from Lesley U, and now... once August hits, will just be able to focus on my clinical hours.  I have found a best friend in a man who is ridiculously supportive of me, this illness, and my family.  And I cherish every day I get to spend with him.  I have traveled more to visit friends than ever before these last few months, and am enjoy my first summer without chemotherapy since I was twenty one :) I have formed new friendships at my new University and re-nurtured and reunited with old ones in Boston. 

• I have very, very small disease.  And this trial in Texas has shown wonderful, if not the best results I've seen in a trial that I've participated in so far.  We are hopeful. We are hopeful.  I am still, very hopeful.  

• The remission. I achieved a remission: something none of us thought was possible.  Knowing that it can and did happen makes room for this possibility in the future with the right combination of drugs.  Remember: This disease is manageable.  Warriors such as Adrienne, Zach, and Mike have done/did it for more than ten years.  I'm barely coming up on five :)

• I look and FEEL healthy! 

 In all other areas of my life, things are going swimmingly.  So for now.  We focus on these positive factors.  We, I am grateful for all of these things (especially this good-looking, brain-ack family of my mine!)

In other news, I wanted to shift the focus to those in the trenches at the moment.  As they definitely need more of your positive waves of support and love than I do. 

• Anne, it seems is facing her last two-three weeks of life.  She has gracefully touched all of us in a way of speaking of death and dying that no one in my life has.  Her acceptance, and even her wit has survived despite her body deteriorating over the last few months.  Please keep her family in your thoughts.
• Andy, has ventured into Hospice.  And with (mother) Kim and their two kids balancing their lives, and this illness, I can not even imagine how difficult things must be for them during these summer months.  Please send love to the Keely's.  
• Mike, just as I have relapsed after Treanda (Bendamustine) has found out that his cancer has returned as well.  Mike and April now need to make difficult treatment decisions that compromises different aspects of Mike's quality of life and body.  These choices are never easy, please send them waves of comfort as they make these difficult decisions for their entire family.
• Karin is gearing up (after four attempts) into her allo transplant in NYC.  Karin and Craig have been awaiting this day for many months, we cheer and send large waves of hope and optimism that this form of treatment is successful! And that this couple survives a summer in the city! 

I send my love to all of you struggling, fighting, overcoming, in the trenches, surviving, pursuing life or treatment, and know I think of all of you, very often -- and lots that are not listed here.  Please remember to hug the ones you love, very tightly today.  And to attempt to see the gratefulness in your life, your loves, and yourself. 

I leave for Texas June 17th, receive my first infusion on the 18th.
My second infusion will be July 1st.  We scan eight-weeks, post second infusion (Mid-August).


Love & Light,
B.

Catch me if you can...

As the spring semester wrapped up, my family and I were able to celebrate my little brother's graduation: all with good health, and amazing smiles.  This is just a taste of my upcoming, traveling, summer.  In the next month, I will be in several different states.  So, catch me if you can... more pictures, soon :)

This coming weekend: Boston!

Next week: NYC,  Ian Axel Concert +  (6 month) PET/CT scan at NYU

Memorial Day Weekend: CT for a college reunion and to celebrate Max's first birthday!

June 17th: Houston/EBV Trial 

June 25th: Dispatch Concert in Boston, then flying out to Chicago for a wedding.

July 1st: Houston/EBV Trial

Phew. My head is spinning just thinking about all of this. But, I can't wait for every second of it :) Also a huge, huge, HUGE thank you and ridiculous love and gratefulness this month go to my Uncle Jay, Aunt Bob, Thel and Wendy and Alison for financial help in transportation.  I can never thank you all enough for your help.  

So! Catching up on life is my overall goal this summer: and Jake's graduation started it off just right!

Remember to hug the ones you love today,

as thoughts, prayers and strength go out to my fellow refractory kids:  Andy and Anne

who are both in hospice care at the moment. 

Love and light to all of you,

B.

As the week unfolds...

As the week unfolds I will be heading to New York City for my lovely PET/CT Scan.  It's hard to believe it's been three months since I was declared cancer free, time certainly does fly when you are healthy.

We obviously hope that remission continues, if it does not though -- we do have a plan of attack as always. This week, I hold some of Kirsten's poetic words, close to my heart as I head in for testing and am hopeful for good results.

Kirsten's words:

I am

I am writing to you now from this place of strength. From this place of heart-thumping, heart-held tenacity. I am writing to you now to remind you of the spirit that lives and breathes, rises and falls, deep within and beyond these walls of the body. That lives out there, amongst the woodland owls, the ancient oaks, the cherry blossom petals that dance as if ballerinas poised in a slow curtsy to the ground. I am writing to you now so, should you need me in the future, at a time when struggle overtakes you, to say this: You are the owls, the oak, the cherry blossoms. You always were and you always will be, no matter the body that holds you now.

Sending love and light,
B

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.

------
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!

Tears and Scans

I am in sweet
sweet --
 beautiful,

Remission.

(complete remission)

for the first time in 

three years. 

B.

Me and  Max are happy campers! Go celebrate!

I live for them.

This will be a lovely, long update, so please pull up your favorite comfy chair and some peach tea, and settle in...

Although treatment last week was a bit rougher than past treatments, numbers and weight were absolutely excellent.  After last month's weigh in at 105.7 lbs, I pumped myself up to 110.8 lbs last week. Another five pound increase was an incredible milestone, I have now officially gained 20 lbs in the last six months after my many hospitalizations last year, it finally appears I am hovering over my normal weight (115lbs), and after the next month and Thanksgiving coming up I'm hoping to find myself around 120lbs as I head off to Greece with the loves of my life in December... A PET/CT scan is set for November 11th, and treatment will continue that afternoon into November 12th. This will be round five of the bendamustine (I will only receive six cycles in total).  My ESR/SED rates/values have been below 15 for the last two months -- this in itself is a triumph.  We obviously hope that it continues to stay at a normal rate, especially once treatment ends in December.

My energy has also been at an all time high, with hitting the road almost every weekend to visit friends and family in different states.  Midterms are complete in my classes, and it's pretty smooth sailing for the rest of the semester until Finals set in again. Although I am incredibly grateful for being able to take classes this semester, its amazing to me how I crave more challenge, more discussion, more richness from this program.  There are many nights I head home after class, missing, desperately my Lesley Education in Boston and the connections I've made... however, I'm thankful for this second chance at my Master's and know once I'm back in the field interning this coming year, another piece of my puzzle will be filled.

Aside from having a wonderful oncology team, supportive family (who I get to see SO MUCH more often now that I am living in PA, that makes me smile). I am also ridiculously thankful for every person who has donated to the 'Rebekah Fund.' No one realizes how expensive New York becomes during treatments, since we have to buy food there (and are trying to plump me up), as well as garages to store our cars, gas, and other expenses. Honestly, without all of the donations (especially from my Uncle Jay's work -- designed by JANE in a Bekah Bouquet).  I'm not sure how we would have swung it this month.  I thank those who have donated five dollars, I thank those who have donated more, you have no idea how fortunate I feel... to have all of you, and your kindness connected to me in some way. I truly, truly appreciate it.

With all of these amazing pieces of my life, the stability of treatment, and finally being able to spend quality time on campus, and with my beautiful family and friends -- most would attempt to ignore the other underlying meanings of this month.  But, what I've learned most from this disease is, that even though I may have some short-lived happiness, there are others, still struggling... there are others I love and adore that these weeks and months should not be ignored.

I find it's easy to turn a blind eye, when things are going so well for you personally.  But, without some of the people who have touched my life in the past, I would be nothing and no where I am now, without them.

October is a ridiculously difficult month in my heart. Two years ago, I lost my dear friend Scott, who I still think of every day to this ugly disease, and a year ago... many of us lost Adrienne. Though the leaves and foliage are bright and vibrant, and smiles, pumpkins, and coffee's are shared, there are few moments in which I don't think of these two during these weeks.  My heart continues to break for both families, and as Adrienne's Unveiling is this weekend,  I can't help but wish all of this -- for Scott, for Alison, for Adrienne, and for those of us who are still fighting, that this... is all a bad dream.

Now that I've entered into a new program, I am asked difficult questions (since I don't have a full head of hair yet), you can tell I've been or am going through treatment.  An older women in one of my classes continues to ask me how I do this, how I keep going, knowing that there will never be an end to treatment, why would I want to live this life?

With a deep sigh, I wish I could describe the privilege I feel that I am still here, that there should actually be others, many of us (Sarah, Eric, Jessica, Pat, Shannon, Jake), that should still be here as well.  That although I have had a whirlwind of good news, and beautiful people who surround me, I still feel it. I feel the difficulty of this disease, the rawness and vulnerability of tireless treatments, the damage and brokenness that one can feel.

Why would I want to live this life?  Because with as much pain that I allow myself to feel from others and my own disease, I have a chance (for some reason or another) to still be here.  Living.  However and in whatever way I can. And I keep going because I know they would for me. I know Scott, I know Adrienne, I know Sarah, I know they would all feel the pain, as much as I do, and have it motivate them.    For the last four years, I have woken up many mornings with the knowledge that this cancer will grow in me for many years, and I have to be okay with it... I attempt to suck as much marrow out of my life as humanely possible, and I know that when I really really live out my days, I live it for them.  I live it for those who can no longer be here.

So, I ask you, while you hug the ones you love this October, live for the ones that are no longer with us.

'She who has a why to live, can bear with almost any how...' -- Nietzche

Please send love and support to Alison, Adrienne's mother.
Wrap her in your strength and warm thoughts please.

- B

No news, is excellent news.

After a Thursday-Friday treatment last week, I was able to recover and jump back into life on Monday afternoon. I've never recovered this fast from a chemotherapy before. Things are good. 

My weigh-in was also a celebration in itself. Last month's weigh in was 100.5 lbs. September's weigh-in was 105.7 lbs.  Five pounds in one month? Amazing. In addition, my SED/ESR levels dropped from 130 (in July) to 15 last week.  For the first time in a really long time, it's nice to be boring. I'm eating it up.

Due to some amazing family and friends in the next three months I will be hopping in cars, planes, and trains to....

California
good old Hartford, CT
Dirty Jerz!
and Athens, Greece.

Scan on November 10th, Dr. O is hoping for a small remission, which would mean a month or two off of treatments. He might just be right this time...

xoxo
B!

a new start..

This post confirms the official new beginning, it affirms my come-back, it demonstrates that even those who you think after weeks in the hospital might never see the outside world again -- will surprise you.

I may have lost ground, somewhere along the line this year. But, I'm gaining it back in a different way. I tend to do this every year or so, if you aren't familiar with my story. It keeps this interesting. Never dull. Never boring ;) Even though I really wouldn't mind a little boring in my life.

There are still a million and one things on my to-do list before the first of July but a big one I get to cross off. It's all thanks to my Moms, Uncle Jay and Aunt Bobbi, we finally found myself a new apartment in Doylestown, starting July 1st. It's in a perfect location (I can walk to the bus stop, where it picks me up for NYC), I'm practically neighbors with one of my closest and oldest friends here (Hi Mr. Ward!), and starbucks, the dtown bookstore, and my favorite bagel place are walking distance. The parents are about a 5 minute drive for any emergencies, and my pharmacy is across the street. Now how sweet is that for a cancer patient? :)

In addition, my Aunt and Uncle have also opened a trust account for me.  Fortunately, I haven't needed to think about financial issues too too much in the cancer world, but as treatments continue (we never planned on me being sick for this long - who wrote this story anyway?), some of which are not on my plan now -- or free from clinical trials, I am here, like the rest of the world, to graciously ask for any donations. Help for bus rides to NY, help with prescriptions, help with IV fluids at home when needed. Cancer is definitely a full time job, yet, we're the ones paying! and not getting paid.  Anyway, I will slowly learn how to attach paypal to this account, in case any of you would like to make a small donation to the trust.

And lastly, we approach the dreaded scan next week. Which is where I want to share a bit of information about the SGN, because it might be my last post on it.  Originally, the smaller dose as we know did not work. I have a small feeling, due to symptoms, that this large one is not working either. Which will mean a new start of treatment. For those who are or are about to go on SGN, I warn you about the side effects/allergic reactions I had during ALL of my infusions, even with premeds.

Allergic Reactions:

•  Rashes over my entire upper body, and I mean, covered from fingertips to shoulders with red blotches, also throughout my legs, and spots around my hairline and upper face.
• This is not to scare anyone, but unfortunately, during my very first infusion I lacked oxygen and was unable to breathe for a few seconds. The drug labored my breathing to the extent that I could not breath on my own.
• Deep, deep, raw pain in my lower back (where your stem cells develop). This would go on and on, until they tripled my dose of morphine. 
• Fevers during the infusion
• High heart rate
• Low blood pressure

Side Effects: 

• Neuropathy (I know I spelled it wrong, I apologize). Losing feeling of my toes, but within others its been extreme to full feet, fingers, and hands.
• Hair thinning - they tell you this is a rare one, and now I've spoken with plenty of others that agree it is NOT rare. Haven't needed to take out the buzzers yet, but I'm getting close. 
• GI tract, I've hardly consumed any chocolate or coffee since my first infusion. 

So, that is so far what I've experienced. Through cancer B-symptoms, the drug tends to where off one week before I am suppose to go into my next infusion. So, I have an infusion, have a decent two weeks, and then week three -- as it started for me on Wednesday, the fevers and vomiting hits.  I've also had low blood counts, dehydrations, and other issues throughout this treatment but I mainly believe that is due to my cancer and not the actual drug. 

So. This is suppose to be a cheerful update. And, it is! Whether I continue this treatment next week (scan on Wednesday), or am told that I need to start a new treatment due to further progression it will be a new step. A step towards a small form of stability in treatment (that we haven't seen for a long time), or a step towards a new treatment that will hopefully start showing this beast who is boss. Either way, these are steps forwards, and god knows I like to move :) 

Here's to new, delicious, beginnings! 

Sending Love,

B!

Grateful. for. the. fam.

These are my ten younger cousins, my grandparents on my mother's side, and my pup, Lily.  These last few weeks, I can't even tell you how grateful I am for my family -- the Furey's and Rosan's.  They have supported me, emotionally, physically, financially, mentally, moving-wise, and in other areas you can think of. They truly lift me up, when I am down.

So! Decisions have been made. And although, it may not have been 100% what I have wanted to do if I was healthy, this is a good compromise, and I am at peace and happy with my future plans.

I've finally decided to move closer to home, near this beautiful family, and lots of old friends, and leave Boston for the time period.  I have decided to transfer programs to a PA school here, close by, and continue my Masters in Counseling Psych (focus in children/teens), and move into my own place in good old Doylestown. Here, I'll finish my degree in another year or two and then see where the wind blows me. Originally, this was a very hard pill to swallow. My love for Boston will never burn out; however, a lot has changed over the last few months, and I know, this is the right move for the time being.

I have the support of my family around the corner, good, old friends that have been wonderful to me here, and I am much, much, closer to treatment.   Although, I don't want to admit it, its been really nice, being able to lean on others, when needed during these months.  And though I know I could have gone back to Boston and run myself into the ground for the third time :) I think I would rather take things a bit slower, here in Doylestown. Be near family.  Enjoy things.  Pace myself... and get stronger.  And that's much easier to do when you have your family right around the corner.

So game plan for life:  Transfer from Lesley University to Chestnut Hill College, find an apartment (which will happen HOPEFULLY any day now), YOGA, and smile more.

Game plan for cancer: Enjoy these next two weeks. PET/CT Scan on the June 16th. Prepare for the worst (that SGN-35 is still not working, and we hop on to a new treatment), and hope for the best (stable disease, so we can continue this treatment). We'll see which way it goes.

So, here's to game plans :) and being happy that I have some, once again.

'you will find peace within yourself, once you've found all the pieces....'

Sending Love,
B!

Results

Bad News: My disease has progressed in several areas in addition to new disease. Progression of old disease ranges from .5cm - 1.5 cm.  The largest node is now 5.0 x 5.5cm, above my right hilum. This is the largest my disease has ever been.  I also have new nodes (since transplant) located at the back of my abdomen ranging from 1.0 x 1.2 cm.

Decent news: My therapuetic dose was lower than normal, since the first two cycles were studying the effects of a pharm drug in combination with the SGN-35. That means, they're letting me stay on the trial for a few more cycles to see if the normal dose 1.8 per kgs, instead of the 1.2 per kgs I've been receiving will make a difference.

In other News: I do not have to be back in New York for my weekly visits anymore. Therefore, I won't be here till May 27th, for my 4th infusion. As I had my 3rd infusion (still with allergic reactions) yesterday morning.



'i pray to be like the ocean, with soft currents, maybe waves at times. but, more and more, i want the consistency rather than the highs and the lows.'

B

Oy Vey.

Again, wishing I had better news to relay to you all. But it is what it is...

Monday the moms and I headed to the ER due to major chest congestion and coughing. Luckily, it was attributed to major allergies and sinuses. The X-ray revealed no pnemonia to speak of. Thank god. However, the coughing and other symptoms has prevented me from receiving a good nights sleep the last two weeks, and added antibiotics.

Thursday morning, I arrived in New York City for my weekly check-up.  I had been feeling extra fatigued and light headed but just assumed it was due to my head cold. After several blood tests and my check-up with my NP the results came back and it showed that my Hemoglobin (red blood cells) had taken a huge nose dive as well as my potassium (major lack of elctrolytes).  I could hardly walk, or keep my head up with my numbers all over the place. The rest of the day was spent in the infusion room to receive fluids, potassium, and a unit of blood. We arrived at 9am in the office, and left by 8:30 pm that night -- long day to say the least.

This morning, I headed back there to recive two more units of blood since my levels were so low.  My reserves aren't that great right now, but I'm attempting to hold tight and see where this takes us. For the first time, in a really long time my oncologist team is again feeling that these symptoms do not have anything to do with my cancer, nor the treatment. SGN-35 is not suppose to cause 'counts' to bottom out. So, today, my NP decided to do addition blood tests to see again... where these mystery symptoms (the fevers, vomitting, low counts) are coming from.  We are all feeling again, that something else, or some type of infection continues to rear its ugly head from week to week, and no one can put their finger on what it is. To say it is frustrating would be an understatement.

On a good note, this is the last 'weekly' check up I will have. My visits once a week to New York have definitely taken a toll on myself, my body, and my family and friends -- we are ready for this part of the trial to be over. After next week, I will only have to return to NYU for infusions (once every three weeks).  So, we cheer for that.

In addition, I'm staying at the Hope Lodge througout the weekend and next week. I have received two cycles of SGN, and next Thursday morning, May 6th, I will have my first scan. If the scan reveals stable disease (which we hope for), I continue on this trial, and receive treatment (for cycle three) the next day, May 7th.

This part of the trial has been a long one, I'm grateful and thankful that it is over, and hold onto hope that the scan and future treatments reveal promising news. Thank you all for your kind thoughts, and positive support. I'm not sure how I would keep truckin' along without each and every one of you.

Lastly, I  officially turned 'two years old' on April 22nd. Although, yes, my transplant failed, it is still an accomplishment -- that I'm here -- still kickin :)

Sending Love,

Bekah