D is for Doxil (and lots of Damn hope!)

Now that my blog is private, it is easier to share specific details. And hope that you feel more safe leaving comments as well -- after teasing through many emails, I've only allowed two hundred individuals to view this site. So, here's the nitty gritty details of our next steps. (Disclaimer: This post contains lots of (medical information) and specifics, it can be overwhelming, take your time to read, think, and process -- I know it is a lot to throw at all of you, but felt you needed to know the details)

It was not easy heading back to Dana Farber after such freedom the last two weeks -- but, it's done now, and the plan of attack is in place.  Just to clear up some things. I was not formally thrown off the LBH589 trial -- but, would be come September.  Therefore, instead of starting a new treatment, new classes, and a new internship all in one month.  I took it upon myself to make the decision to start treatment now.  I have a light summer with classes, and lots of time.  And as some of you know I am the queen for horrible side effects. So, I decided (with my family) to discontinue the LBH, and begin Doxil as soon as possible.  This allows me two months to figure out when my blood counts will drop, how bad the fatigue is, what I need to take for nausea and GI issues, and anything else that decides to rear its ugly head. 

This is the right decision.  Others might try to squeeze out treatments and trials as far as possible -- but at this point in time, I need to have the control over my life, not my disease. During my first two treatments I allowed this disease to rule my life, my decisions, where I lived, and what I did. Now, I need to reverse it.

I have a life -- I am going to live my life, and THEN figure out how to fit the disease and treatment into my life. 

So, this Monday we discontinued the LBH. Which required testing on lungs, heart, blood, kidney function, and liver -- results show all normal! I even increased a bit on my heart levels -- as they are normalizing a bit more since transplant. All good news.

Now, the Doxil. 

Doxil is normally used for ovarian cancer -- but, there have been some research that suggests if Doxil is used directly after the LBH589 trial -- the lasting effects of the LBH plus the Doxil could contribute to a tumor response (decrease in tumor size).  This is what we are hoping for. 

The Doxil will be given on a twenty one day cycle. Meaning, I will have one, three- hour infusion. Then, I will have off for twenty days. This is considered cycle one. My first treatment will be Tuesday, June 30th. Treatment two will be July 21st. Treatment three will be August 11th. However, these dates are able to change due to side effects. Oh side effects! How I've missed you.

So, what are we actually looking at that can happen to me during this next treatment? Doxil is not considered that high in toxicity. I most likely will not lose my hair, or have tanked blood counts. But here are a list of what Dana Farber says I need to look out for:

Side effects of Doxil: 

*facial flushing, rashes on face

* low blood pressure

* dizziness

* severe tissue damage (if chemo leaks from infusion site)

* nausea (boooo!)

* vomiting 

* loss of appetite

* hairloss

* dry, itchy, skin

* GI issues

* blood/marrow suppression (low blood counts)

*mouth sores, mucositis 

And last and not least, hand and foot syndrome. The worst side effect that could occur, in my eyes. Hand and foot syndrome is the painful peeling of hands and feet, sometimes it will decrease within hours after an infusion -- others have had it on and off their entire treatments. Sometimes, lotion decreases the pain -- other times, people are unable to walk, use their hands, or even take hot showers due to the severity of discomfort, peeling, and pain. 

My oncologist says it is 'very unlikely' I will have hand and foot syndrome; however he has seen it. And, since I am the queen of side effects, I need to be prepared for all of this.  Not a pretty picture obviously, but something we have to do in hopes of beating back this disease.  In general, I could have NONE of these side effects, SOME of these side effects, or ALL of these side effects -- we won't know until the drugs hit me. (So cross those fingers!)

Now, to be honest with you about my cancer and its progression. None of this is alarming -- but, there are five nodes (tumors) we are looking at in my upper chest.  Although the LBH first, decreased them drastically, throughout each scan, they have been slowly, ever so slowly been growing.  At this point -- throughout the last year, I took it, because we are trying to manage my disease opposed to curing it.  The LBH gave me a great spring semester, and summer vacation.  And now, we hope this FDA approved drug (Doxil), will have more of an effect on these tumors.  All of them are smaller than 3x4 cm in diameter at this point, and none are in any major organs = all good things. :) 

The game plan: We will do three rounds (cycles) of Doxil, and then we will scan mid-August before my semester begins.  With this scan, there are two schools of thought -- the Doxil will work, or it will not. Most likely there will not be an inbetween. 

If it works, and my quality of life is good -- I will continue for three more cycles (total of six cycles). End somewhere around October, and then take a few months off of treatment.  

If it does not work, we think about adding two other drugs to the Doxil to make it a cocktail.  In this case we would add Gemzar and Navelbine.  Which is a normal protocal for Hodgkin's called GND -- this cocktail is used when other conditioning chemotherapies for stem cell transplant fail.  It probably isn't the prettiest thing ever -- but supposedly, people can have a quality of life on it. 

I know, this is a ton of information -- and I can't thank you all enough, for doing your homework on me :) and reading about these next steps.  I apologize if it is too much information as I know I have been been holding a lot of it back (due to my blog being public), But, now I have the opportunity to truly share the nitty gritty with you (which ain't too pretty sometimes), and rawness of the disease and future treatments, without fear that someone may stumble upon my treatment plan in my professional life.  

All in all, I am ready for this next step. I am ready to (hopefully) beat back this disease as much as possible. I had two glorious weeks away, am in love with my weekend summer classes so far, and am escaping to the New Jersey shore for the weekend... one last attempt of freedom before the infusions begin.  Most likely, for most patients, this drug hardly effects them -- and again, I hope this is true for me.  But, I like to prepare for the worst.  Only, time will tell. 

For now, I am enjoying each and every day. As much as possible. And living out each minute -- again, our goal for plan 'B' is quality of life. Not a cure. We are here to manage this chronic illness so I am able to continue my life.  And, that is what I am sticking to.  We hope the Doxil does a job on these small little tumors.  And we hope that the side effects do not drastically alter my quality of life. And that's all we can do... hope.  So if you have some time -- send some my way on the 30th =) I'd like to have extra, just in case.

hope is the thing with feathers

that perches in the soul,

and sings the tune -- without the words,

and never stops at all... 

Here's to plan B!

Sending tons of love,

B!

On the move!

I am back in Boston for just a quick weekend, and a few doctors visits early on in the week. But, wanted to share pictures of my two-week vacation stretching from the shores of Miami Florida to the Mountains of Kentucky.  I loved every, single minute of it. And was able to spend some quality time with my absolute favorite (out of state) family and friends. 

On to PA/NJ next week....!

South Beach with Chris, Alison, and Adrienne. My favorite hodgers :)

Orlando/Disney with Alecia!

Ladies of Neptune Beach Elementary

More of my favorite teachers!

My favorite kids from Neptune Beach Elementary

5th Grade Graduation!

Hiking in Kentucky with Darrel :)

As I've said, I'm only back in the bean till Tuesday -- then will be driving home for the first time since the holidays to see family and friends in Doylestown, PA. However, my quick visit packs a lot of punch. Besides starting my summer session this weekend (yes, lesley has a weekend format, during the summer - BRUTAL). I am hanging up the towel on the LBH, as my nodes have just progressed too far to continue this trial. 

To some, this is sad news. My first trial has ended that means 'Plan A' is complete. However, the LBH589 extended a lot further than I had anticipated, and I was able to muster almost an entire year of some good-quality of life months on it.  Monday and Tuesday I will be meeting with my oncologist team to set 'Plan B' into place. As I will be started a chemotherapy called Doxil which has already been FDA approved. This drug is suppose to have a synergetic affect (work in combination with the after effects of my last drug -- the LBH), and we are hopeful that this will beat back my disease before I enter my internship in the fall. 

The Doxil is one, three hour infusion every three weeks. I will be starting this treatment on June 29th. And am crossing everything I have, that I won't be plagued with horrible side effects. But! I will have more details once I meet with my favorite people at Dana Farber this week, and drill my doctors with even more questions.

The next two weeks I will not have one single drug in my body.  I can't really imagine what they even feels like after almost a straight year with the LBH in my system.  I plan to live deeply and suck all the marrow out of the next two weeks as best I can.  You should too! ;)

Sending Love to each and every one of you,

Bekah

Summer of Bekah!

Well, for me at least ;)

This is my official, summer vacation for the first time in three years.

I worked my little butt off this semester -- which definitely paid off. And LOVED every second of it. In fact, not seeing some of my favorite future-therapists in classes these last two weeks, has left my brain much less stimulated (miss you ladies!). 

However! Now is time for fun in the sun.  This afternoon I am high tailing it down to Miami, FL to meet up with two beautiful women, Adrienne and Alison. All in all this is a MUCH overdue visit with two of my favorite people who continue to fight this disease, just as I do.  After some R&R with the girls, I'll then be driving to lovely, Orlando for a day in Disney with friends.  

And THEN, after two and a half years, I'm returning to good old Jacksonville, Florida. My kids (who I taught two years ago) are graduating elementary school next weekend, and with it being my last time before they all part to separate middle schools, I wanted to give them one last hug.  So, I'll be seeing old co-workers, parents, and students.  I'm sure it'll all be very, very, bittersweet. But totally worth it. 

After my time in Florida, I head back to the bean for a quick weekend class..

and then, will spend a little over a week in PA visiting the moms -- spending some time at the Jersey shore with my family, and basking in the glory of summer. 

Although I'm looking forward to my summer classes turning up the heat in late June. I am ready to be a beach bum for a few weeks. And see some of my favorite faces. 

As for the cancer talk -- some things are in the mix, to change treatments: it appears that I'll be ending the LBH clinical trial in the next month and starting Doxil up sooner than anticipated. However, all of that will be attended to, once I return from my vacation. Once again, if you would like to continue reading my blog, please click here, and read. 

For now! I am officially declaring -- this the 'Summer of Bekah' and I am going to enjoy every minute of it.  You should too. 

  Remember to hug the ones you love today, and everyday. 

Sending Love, love, love...

B!

--

(Please note: We lost another member of our hodge army this week, please stop over to the Parr's Blog, and leave a message, as Pat (James) passed away Tuesday afternoon, leaving behind his young wife, two year old son, Josh, and lots of family and friends who are grieving.)

One year old.

In a few short days (April 22nd) marks the one year anniversary of receiving back my stem cells, at Upenn Hospital. It's amazing, how fast a year flies by. In no way do I really want to reminisce about the good ol' times in the transplant ward. But, I do believe that it's important whether or not your transplant has failed or been successful. That, those transplant warriors, congratulate themselves -- if you're still alive, still fighting, no matter what you're a survivor.

And, all that matters. Is I'm still here. Failed transplant or not. In the grand scheme of things, one year old bekah is doing pretty well =)

So there are few things I must update with all of you...

1. I received my scans from last week. And, we are still in the 'stable' disease range. However, through most of this trial. There is one main node, in my upper chest (the first place, I always relapse, and the first node that showed up on the PET scan after transplant), that continues to grow millimeters. Everything is tiny. M&M size remember? There aren't alarm bells going off. We are still stable. The other nodes, have hardly moved in any direction on the 15 mgs of LBH. However, if this one node continues to go at the pace it is -- in progression. My estimate is that I will be thrown off the trial in September. And, we will move to the next drug of choice: Doxil.

Am I upset? I obviously wish I could continue this trial for the rest of my life considering the quality of life I have at the moment. However, this trial has lasted me an entire year. A lot better than I expected.

Is this for sure? Absolutely not. Recently, in I informed most of you that I asked for more chemotherapy. We increased my dose from 15mgs to 20 mgs. This scan did not show any of the results from this dose increase. Since, I had only changed my treatment, less than a week before the scan.

So it could reduce that one node on the 20 mgs? Definitely. The last time I was on 20 mgs, my plateletes and blood counts were bottoming out. I could hardly stay on the 20, and we thought for sure they would throw me off the trial, since my body was not strong enough. But! i've been on the 20 mgs of LBH for about two and a half weeks now. And, as of this morning. My blood counts (after taking a small hit last week), are slowly coming back up. Which means, we might get a full cycle without any holds, or interruptions. Which could definitely be helpful in reducing this one node.

So, the worst case scenario? I have an incredible summer on the LBH, as it is holding the cancer at bay, and not allowing it to spread like wild fire. Take summer classes, enjoy a SUMMER (which I haven't experienced in about three years), and get a tan. Then, we most likely will get a scan in August, and change to Doxil Chemotherapy.

Best case scenario? The 20mgs, does some damage. And, we ride this horse until the cows come home. =)

Most likely though, we will prepare for the change in treatment, for this fall. Which is fine.

2) My life!
Things have been great on the school front, I've accepted my clinical site internship from Sept-May of next year. I will be working with children ranging from 5-18 years old, doing therapy with child witnesses/victims of Domestic Violence, counseling young women in rape crisis, helping out with a teen dating curriculum for middle schoolers, and group therapy with populations of children who have been sexually assaulted, witnessing, or other forms of trauma.

It's going to be the most rewarding experience I've ever done. But, after two years of waiting for the opportunity to work with kids again, I am more than ready. So, internship + classes + chemo = busy year, next year. But, I am incredibly pumped for it to begin.

In addition, my 'overload' semester is almost complete. As, I only have three weeks left until I can see the light at the end of the tunnel. And have a few weeks off before I lock myself in the library, for summer classes.

3.) The blog -- which is where I need your help.
As my program intensifies, and I begin to have my own clients. It appears that the internet footsteps I am leaving behind, might not be the best approach. I want to help. Obviously, for other young adults going through this period of their lives, individuals with chronic caner, or those that are entering trials that I have information for. However, I am struggling with the reality that this can easily be found. And, I would not want supervisors or clients, reviewing this site. On the flip side, I feel it's important to keep, for other survivors...

So, I guess, what I am asking is for your thoughts. If, this site is no longer helpful to others. It will be an easy decision. But, I'd love to hear what you all have to say.

4.) Hope you all are well. As Spring has FINALLY come to Boston today. I hope all of you are enjoying the sunshine, the start of baseball season, your friends, families, and your everyday lives.

Sending all of you tons and tons of love,
from boston,
and my heart.

<3 B

Just call me, Lucky.

At this point in time, I'm comfortable enough to say, that in the worst of the worst of situations. I am the luckiest girl in the world. The last two months I have been overwhelmed with an amazing program at Lesley. Although Education, always felt like 'my calling,' I never seemed to connect with my peers very well in the Master's level. Being, one of the oldest woman in the program.

Now, as I am one of the babies, I am incredibly humbled and feel such gratitude towards my peers and incredibly introspective professors. My classes, the challenges, the papers, and the discussion is rich, thought-provoking, and raw. Real issues, ethical questions, my mind finally feels challenged in a way, I didn't realize was possible. Although I have a zero psych background, this path makes me feel at home. In some ways, I knew I'd get to this here (maybe twenty years from now), but I'm glad I'm somehow, I got here faster then expected. And am so overwhelmed with the community developed within each classroom. To say that I'm happy, would be an understatement. And, when friends call me a nerd or a work-a-holic for focusing my attention this last month on my studies and internship interviews -- I'm okay with it. This is not a program, of just books here. This is program for and of people. This is a program, in which we are all making a difference, and I'm grateful to be part of it.

Aside from that, my midterm papers are pretty much over. Which, lets me breathe a bit more. Still lots of work, but I have had the beautiful opportunity to spend and be spending time with my gorgeous friends. For the first time in three years, I went and celebrated my birthday with an amazing gift from my uncle and aunt, who invited me to their beach house in Florida with three of my a-mazing girlfriends from Doylestown. I have never, ever, been more relaxed in my life. It was heaven.




Aside from our four-day-vacation. Midterms. And up-coming interviews for my internship for next year. I have been spending a decent amount in the hospital this week. Which is okay. But, thought it would be important to lend some advice to those who are on the clinical trial track. Although, in the beginning the LBH589 was very stricked, and I didn't have a lot of flexibility my doctors and I have been attempting to 'bend the rules' a bit. For instance, I was suppose to have a CT scan about two weeks ago. But, with the pressures of coursework last week and this week. I asked to propose to the drug company if we could push it off a bit. In response, they accepted this request. Sometimes -- like a wise woman once said (Alison ;))... All you have to do is ask.

We are also, experimenting. At the moment I was on 15mgs of LBH, feeling a bit nervous for this upcoming scan since the last scan did not reveal any reduction (yes, I probably should have told you all, but stable is still good, at this point in time). I asked since my plateletes were going up, and doing well, if we could up my dose a bit. I know what you're thinking -- who asks for MORE chemotherapy? Well, me :) If I get thrown off this trial, most likely, I will be entering a tougher chemo regimen, so, if my body can handle a higher dose in chemotherapy, on this trial. I will take it.

Thus, on Friday, we began on 20mgs. The catch? The drug company needs blood tests from me every week. So instead of spending one full day at Dana Farber every other week -- it looks like I'll be there a bit more until my body proves it can handle the 20, or not. I'm okay with this for now. As, a scan is coming up soon. I guess I just want to push my body as far as I can, in hopes that two extra weeks of a higher dose will reduce some of these tumors -- who knows right? As far as side effects, I'm trying to suck it up. But my body can already feel the difference as my fatigue has reared its ugly head again, and the nasea has returned. But, sometimes, risks like this are worth it. You give a little, you take a little. You have to strike that balance.

So, time will tell. Other then that. Things are wonderful -- which is the reason for the lack of updates. I am attempting to not think about cancer, unless I absolutely have to. Which has taken time to get used to, but every day, I am learning more, and coping with this to the best of my ability. If not for myself, in hopes that other young adults with a chronic cancer can see -- it can be done. And you can still live and accomplish your goals.

And, on a side note -- who can seriously think of cancer. When you have these gorgeous locks? Have I mentioned I LOVE having hair again? Hope all of you are doing well, and enjoying the sunshine in your life, as much as I am.

Love, love, love,
B

Who's a happy camper?

Me!

Just a quick note, because yet again, my lovely support system has bombarded me with calls and e-mails ;) And, I don't have enough energy to respond to everyone... at the moment.

So kids, the CT went extremely well today.

The good news:
1) no progression
2) we are calling this scan as of right now, stable to small reduction in the disease (my tumors are too tiny at this point, for the techs to determine the percentage of reduction from the preliminary report)
3) my onc team is thrilled
4) no changes of meds (LBH589) or ANYthing till the first week of April, that means, no scans till April, whoooop whooop!
5) first scan, in which my platelets have been awesome, my quality of life is awesome, and no progression/small reduction of disease is awesome.

Bad news:
1) none!

So basically, most of today, was awesome.
I'll update more, once I receive the final report on Monday.
Hope you all have a wonderful weekend,
and stay warm :)

Sending all my love
to all of you,

B!

Too good to be true?

First, thank you all for being patient with me this last month. I personally, was able to take some time away from blogs, cancer information, boards, and some communication in general. And, basically basked in the glory of good blood counts, and visited friends and families during this holiday break. It was nice, to not have to think of my heath twenty-four/seven. And, I just wanted to thank you all, for giving me that space.

For the first time, in a very, very long time. I had planned the next set of treatment (the Doxil, drug), since my platelets were not doing well the last few months. But, much to our surprise. In the last month, every time my levels were tested. My counts have slowly moved up. Today, we reached an all-time high of 115. Which is amazing. Not only are my counts holding, but they are slowly moving up. Which means, I can not get booted off the trial due to my blood levels anymore. (Hip-hip-horay!).

In addition, all of my other counts are going up -- which means, I feel great :)

So, it appears that this dose of drug. Is tolerable. Livable. and I'm having a wonderful, quality of life on it. So, why have I been hesitant to post this incredible news?

My upcoming CT scan. On January 30th.

With the dose being this low (15mgs of LBH), the doctors are hesitant, about the outcome of this scan. With the higher dose, there was definite reduction of disease. But, with this low of a dose, it appears, no one knows, really what the outcome will be. Will this low dosage, be able to keep the cancer at bay? Or are only the higher doses of LBH the ones that have the ability to reduce my disease? So, we will see.

For now, everything is moving in the right direction again. My program started a few weeks ago, I absolutely LOVE what I have gotten myself into ;) My orientation was a-mazing. I met some incredible people, and professors. And, am pleased that I made this jump into a new professional direction. My counts are great. My energy is decent. My smile, is usually pasted on and REAL 95% of the time. So, I'm sure you can all understand why I am a little skeptical, of this scan.

My ducks, once again, are all in a row. And, although, we are prepared to change treatment, if the scan shows progression. MY GOD. wouldn't it be nice, if these last two months could continue throughout my semester?

To just have stable disease. Just seems, too good, to be true. With, everything else. 'Working' in my life. But, we will just have to see. Again, I wanted to thank you, thank you, all. For, your voices of concern this last month or two. It's been so nice, to feel normal, for a bit. And, take some distance, when I can. For now, we once again will prepare for the worst (progression of disease), but hope for the best (stable disease).

And, no matter the outcome, just be aware. That I am so incredibly thankful. I had some flawless weeks, of normalcy, happiness, and lots of smiles with friends, family, and my education.

Sending Love,

B

Brrrr... Happy Holidays!

Just a quick note to wish you all a happy holiday season. And hoping you all keep warm! It is freezing here in Boston, these are truly the days I miss living by the beaches in Florida. And the people ;) A foot and a half of snow in two days, is a little too much for my liking.

As for me, I'm packing up. Heading home to PA, for a few days. Seeing the family. Then getting my butt back here, to start prepping for an early January term, that starts the week of the 5th.

By some miracle, last week, my platelets held up. So, I was not kicked off the trial. A very nice surprise, considering, we were all preparing for the next step of treatment. It seems as though my body is getting a bit stronger, and in the midst of everything, is handling the 15mgs of LBH very well. My next PET/CT will be on January 5th. (edit to add, there will be no PET/CT this month. During Cycle three of this treatment - there is no scan. Next scan will be beginning of February).

We also found out that Jacob, my brother, was a perfect 10/10 match for an allo transplant. If, down the road, in five or six years, I consider that as option. So, all in all, very good news as of late.

Wishing all of you the happiest of holidays, and a VERY safe and healthy new year.
Here's to 2009, being the best of 'em yet.

love,
your favorite jew.

You bounce.

Yesterday was the first snow in Boston. It was light. But, still, the first snow seems the sweetest here. So innocent, perfect, signals the holidays are coming. Finals are here for the Boston area. Change for the new year. Anyway, it was sweet. Ask me again in another month, I'll probably have different thoughts... but for now, I enjoyed it.

As for me, I'm back. I've dusted myself off, and have bounced back. It's a new week. And I feel great, physically. Since I've been in a 'drug holding pattern' for six days. It's amazing how fast my body feels, once I'm off the drug for a few days. And that usually translates into feeling amazing, emotionally. When my counts are low, I am low. When my counts are great, I feel great. It's a shame most of the drugs I will be receiving in the next few years will most likely drop my blood levels. But, no complaining at the moment - they're keeping me alive.

This week, today actually, I will go in and receive my blood tests. And begin my 15mgs of LBH. This will continue for two more weeks, until I get tested again. Here is to hoping, that my platelets will NOT drop so low. If they balance out, on 15 (which is highly unlikely, says most of the doctors). we could possibly continue this trial for another month.

But, we will take it a day at a time.

My CT from last week revealed some good news; however, even though the preliminary report showed 'stable' disease. It appears, since my tumors are so tiny (imagine m&m size tumors), that they did shrink. There was reduction, in what is left in my body. So, we are very happy with that news. There are about 3-4, tiny, tiny nodes. That we're hoping will continue to decrease in size with this last dose of 15 mgs. The next plan of attack if my blood levels take a nose dive at the end of December, is to begin a drug called Doxil.

The LBH and Doxil, appear to have a synergestic effect. This means that because of what the LBH does to the cancer (destroy the enzymes that allow the cancer to multiply), the Doxil then works in combination with the lasting effects of the LBH. The Doxil is NOT a clinicial trial, it is a normal FDA approved drug that is suppose to have little to no side effects (ha. yeah right, which drug, have I received with no side effects!).

But for those that worry ;) This drug is not life threatening. It is given once, every three weeks. And it has been previously used with other drug agents for Breast Cancer, Ovarian Cancer, and relapsed Hodgkin's Lymphoma (usually it is in combination in the GND cocktail). But, with just the Doxil, with one agent, it is not suppose to be that toxic. And I can be treated with it from 6-10 months, depending on if my cancer is progressing or if there is reduction.

But, I hesitate to even post this next plan of attack. I just wanted to give you all a heads up of what my doctors, family, and I are thinking will take part in the next few weeks. For now, we will continue the LBH until they formally kick me off.

On the cancer front: if you have the time. Please visit my favorite warriors, as they are in the trenches of their own cancer battles.

Adrienne and Alison, have been an incredible support to me throughout the last two years. And, after losing one of their puppies last week to a virus, a scan revealed that Adrienne has progression of her disease. To say the least, it's been a rough few weeks for them. They will be visiting the lovely Doctor O'conner, in the next week, in which we all hope he has answers, for them to control this progression.

Also, fellow fighter, Eric, is going through his second allo-transplant. Kathy (his mother) has also been an amazing support to me in the last year. And they are both fighting with all their might for Eric to be cured.

And lastly, a new-hodge face, is Hillary, who also received LBH at Dana Farber. And is recovering from her allo-transplant.

If you have time, leave some love for these individuals.
Also wanted to thank you all, for your kind thoughts last week, emails and phone calls. You will never know how much all of your support, carries me through my hard days...

Hoping you all, take hold of your good days.
Drink lots of fluids, and enjoy your time with family and friends as we approach the new year.

Sending Love,

B

And she woke up....

I have lots to say, lately. But haven't been able to correctly put them into thoughts.

So, I wanted to share some good news. Very quickly, and after I process some things, share some more. As most of you know I was in a fog this last month. Not picking up the phone, not emailing, not really showing any sign of life.

My friends, endlessly came over to deliver milkshakes, and smoothies. My mothers, begging me to put on weight. My head, not in a good spot. But this weekend, I awoke.

I had a PET scan on Friday. Entering this PET, was something, of unknown territory, as this drug has made me so sick that I just, I wasn't sure what exactly I was hoping for.

The good news, was -- my drugs, were moved around. Meaning, lower dosage, more energy, other medications were added to help with side effects. It finally felt after an entire month of living among the dead, trapped in my own body, that I was able to move.

And, better news was, the PET scan revealed that most of my disease is gone. After only three weeks of being on the LBH589, the disease inside and outside of my spleen is gone. And the nodes in my upper chest that had an SUV level of 11-12 last month, have shrunk to 2's and 3's.

As most of you are probably jumping up and down -- the drug is working! The response is wonderful! Thank god! It IS all good news, do not get me wrong. I just have to be cautiously optimistic. After venturing through two FDA approved treatments so far, most likely, I will never be 'cured,' this disease will come and go, for years on end. So, although I will most likely receive a remission -- it could be for a few months or a year, and then we will have to look at another trial. But, it IS manageable. This is doable. And, a semi-normal life, is possible. With patience.

I continue to be thankful, that I respond to almost every drug that has been thrown my way. Some, others, are not so lucky. I am.

Lastly, I wanted to add, that this week, last year we lost a true Hodgkin's warrior, Anne-Marie Dunn. Last year on November 5th, AM, passed away. She had one of the those no-bullshit attitudes, and at the beginning of my journey gave me a lot of solid, clear-cut advice on life and this disease. For those of us who knew her, I just wanted to remind you to send some love, up to her, and to her family. It's important, to not forget, those who fought before us...

So kids,
Slowly, I'm opening my eyes again...
and waking up. with a rather fine PET scan in front of me.

Sending Love
to each and every one of you,

B

LBH589, oh how I despise you....

To literally cut a long, three week-story, short. LBH589 has been nothing but hell. Emotionally, Physically, Psychologically, just everything has been very, very difficult. And it being Sunday, I am not looking forward to this next week.

To summarize, my schedule at the hospital last week was as follows:

Monday 7am-7pm
Tuesday 9am-12am
Wednesday 9am-2pm
Thursday 9am-12am
Friday 7am-4pm

It was, to put it bluntly, just hell.

Next, were side effects. The LBH itself are two small pills, 40mgs. The dose is taken on a M,W,F schedule. Every single M,W,F. You'd think something as small of a dose as that could not affect your entire body. But, in this case, poison is poison. Whether it be infused, or swallowed. And boy did I get a good kick in the butt, reality wise.
Side effects listed on the trial were: nasea, vomiting, fatigue, GI issues, shivers, fevers, skin rashes, insomnia, anorexia.

I can tell you out of the nine that were listed for 'minimal' side effects, I had eight of them. My doses would start at 7 or 9 am, and four or five hours after my dose I would begin to have flu-like symptoms. The nasea, was the absolute worst, so we tried to focus on that issue first hand. Since zofran (a common anti-nasea drug is not allowed on this study), and compazine (which I'm allergic to) are out of the picture. After dicussing things with my two favorite men in my life (My uncle Jay, and my good friend Darrel, and I think you mentioned it too Alison!), it seems that Tigon (which has been discontinued) and Kytril are working the best.

The GI issues, are ones I wish not to talk about, trying to find a balance between imodium, and Senokot, leaves me shuddering just thinking about. And, pain in my lower abdomen, that makes me want to sleep all day.

And the flu-like symptoms are usually for a straight 24 hours, a few hours after a dose of the LBH. This means, the following day (Tuesday night), I begin to feel better, only then to return to swalloing the pill the next morning, and returning to the same cycle. In addition, I am force feeding myself, as I've already dropped around 5-7 lbs in the first week. Due to the nasea, GI issues, and never being hungry.

There is a lot more, to all of this as well, but those are the nuts and bolts of my treatment so far. This week I will only need to go in mornings of Monday, Wednesday, and Friday. Even though those are just the physical side effects that I've described, being back in the hospital again, surrounded by chemo and cancer, has side effects of its own. But, I'm working through them.

I've realized, it's no longer a sprint, at this point.
But a long, uphill, marathon. To where? I'm not sure.

My hope is that as treatments, and medications are sorted out I will have some kind of quality of life, since all of this week was either spent in a hospital bed or my own. And that the side effects will become more tolerable, as will the idea of being treated... for the rest of my life.

I realize that this is a very 'non' Bekah update, not really explaining my emotions or thoughts. I've just literally had hundreds of emails, asking how I am doing, and what the news was of the new trial. So, I felt the need to throw all of this out there.

On a positive note,
At least there is hairgrowth, to speak of....


Hope October is being wonderful, to all of you.
And wherever you are... you're enjoying fall.

B

Change of heart

As most of you know I was gearing up for the NYC trial at Columbia with Doctor O'conner. After a few last minute thoughts, and conversations. I've decided to back out of this trial and go with my gut, and begin the initial screening process for the LBH589 trial here, in Boston.

So Plan A = LBH589.

So many people have offered me their homes, and meals for the next week in NY. That I did not want to appear rude, by ignoring your invitations. And although, I don't have too much information, as of yet. I know that the start date for my first cycle will be October 6th.

The pathologies have been sent back to Dana Farber, the screening tests are taking place this week. You'll laugh at this... Thursday they're doing ALL of my tests. BMB, blood work, EKG, RVG, separate PET/CT scans. Oh the days of being in the hospital from 9-5, you have to love them. But, at least the tests will be done. We'll have all of my results ready by Friday.

The trial has to start on a Monday and due to high volume level for clinical trials, DF says the earliest they can start me is the 6th; however, if someone were to cancel an appointment, or back out, I could start September 29th. But, if we start on the 6th - hey - that's okay with me. One more week of freedom :)

I hope everyone will be able to support my choices thus far, but in the end, I know it really is my final decision, and how I truly feel about each trial. Just know, there were a lot of different factors that gave me this change of heart, which I will share with you all a little later...

Just wanted to send out the word -- so for now,
goodbye Columbia... hello Dana Farber.

* for the worriers in my life:
In the end, the time difference will only be ten days later of when I begin the drugs. In the grand scheme of things, and that is of Hodgkin's, this time difference will not make a difference in the efficacy of the drug or on my disease.

Trust me, this was a good decision.

Sending Love,

B