A Sweet remission!

It's been a long time coming, but we finally got here: 

a COMPLETE remission!

On March 17th, I finally received my remission to start planning the next phase of treatment: An allo-stem cell (donor) transplant.  There are many appointments (doctor and dental), testing, and meetings to occur… but we finally are able to take steps forward to complete this allo-transplant.

Here is our time line as of now:

Yesterday and the 18th of March, I received my fifth round of Bretuximab (SGN-35) and Bendamustine chemotherapy.  We also met with the dietitian, social worker, and financial aid from Columbia at NYP.  However, there is still a LOT to get done. It has been a busy week, and tomorrow we meet with Columbia's dentist, an Echo, EKG, X-rays, receive a Nulesta shot, and run a CBC in case I need extra platelets and/or blood transfusions.

• In the next month: If we are able to fit in all of my appointments, a bone marrow biopsy, Jacob's (my lovely brother/donor) appointments, tests, and treat my teeth (unfortunately with each chemo treatment, more cavities add up which is difficult without dental insurance…) Without causing any infections then we can proceed to transplant in Mid to late April.  Our goal is to only have four weeks between my last chemo treatment (March 18th and 19th) to the first day of being admitted to the hospital.  Which land us on April 14thish.

• IF we are unable to complete all of these appointments and tests, or an infection does arise, or all of our ducks are not in align. We will do one last round of chemo the week of April 14th, and then proceed to my allo transplant in Mid-May.  

• We want to take these next steps carefully and make sure that everything moves forward smoothly.  So that is the plan of attack for now.  As the weeks move on, I will update more to inform those of you when I will be admitted to the hospital, if I'll be receiving any form of radiation, and how many days of intensive chemo I will have to endure in the hospital before my allo-stem cell, to rid my bone marrow of all cells.  Basically this will be a re-boot and I'll start over with Jacob's cells, which means my bone marrow has to be cleaned out by one last hit of intensive chemo (inpatient) the week before I receive my donor cells.

I know, I know, it can be very confusing.  So for now, just know we have achieved a remission -- the first step to this transplant process! And we are still in need of funds even though we are receiving treatment in NYC, for dental, transportation, covering 20% of health insurance (copays, medications/scripts, Jacob's transportation, our rent, and so many other fun bills that we get to pay along the way.).

• So please, please, help and donate to our transplant fund as we make our way towards curing my MDS and hopefully finding a cure for this stubborn cancer. Click HERE: Every donation is tax deductible. 

          Or follow click and paste the website…
          https://m.helphopelive.org/find-a-patient/profile/index.cfm/patient/78B0798F-E787-5EE8-
          F78097B407B3CFCD



Here's to a sweet remission, the first day of spring,
and all of your wonderful support.

Love,
B!

Explain the pain:

As I type this I am sitting on my brand new furniture, in my brand new living room, in my brand new apartment. Although I had devilish fevers all weekend, again my brother, moms, sister and my moving SAVIOR, Melissa (in the above picture) were able to move EVERYthing in one hot-steamy weekend. While I spiked 102 and 103 fevers. It's nice being surrounded with people who just keep tackling one things after another for me. Needless to say, I'm a very happy girl surrounded by Ikea furniture, bamboo, and my books. :) The next post, I'm hoping to post a video of the newly fresh-painted rooms, and the apartment since it's definitely a 'healing' place... and I'm looking forward to spending my time here.

This post is to clarify some things about the treatment I'm receiving: SGN-35.  A lot of wonderful people, ask me how I'm feeling. There's never really a perfect answer for this question. Usually I say, "Today is a good day." Or "This is my bad week." I just wanted to clarify what exactly my bad week is, and how this whole process works. If that's okay with all of you :) Also, it's good for other people who are on this treatment to know that these symptoms/side effects are possible.

The treatment is a three week cycle. So, for example this thursday (July 8th) starts Day One of my three week cycle. After my treatment I have my 'Good Weeks'... Almost about two solid weeks that I feel decent enough to do something in 3-6 hours of time, or have movement, hold conversations, be vocal, participate in society, start YOGA (next week!), and basically do AS MUCH as I can in those 12-13 days of time. Then my "Bad Week" hits. This month, it will hit....around July 21-22nd. One of my friends recently said, it just feels like you sounded great a few days ago. And yes, that might be true, but I'm here to try to explain the pain of my bad weeks. When they hit, things dramatically shift.  And although I might have a good day in my bad week, it usually means I'm really tired of laying in bed, so I force myself to do things, even with 103 fevers.

So, what does a bad week entail:

• If you have ever had the flu. It is basically like having the flu for a solid seven days.
• I start with high fevers, usually 102-103. Sometimes, if I'm lucky they go down, other times they don't. These are the times people usually don't hear from me... just because, I'm so exhausted in trying to beat down these fevers, that I can't focus or think.
• Vomiting. enough said.
• Pain, I'm here to explain the pain because... oy vey. It hurts. Sometimes a combination of pain meds and muscle relaxants help? But usually I have 2-3 days where I just literally can't move because my muscles and bones ache so much.  A lot of people compare this to Fibromialgia, but to the 10th power, and it doesn't stop... until I receive treatment again.

And that's where the cycle ends. This 'Bad Week' ends, somehow Di or my mom drive me into New York, I receive an infusion. And, presto -- my two 'Good Weeks' are back. I hope this clarification helps all of you, so now when you ask I can just say "eh. 'good week' or 'eh, bad week.' Makes things easier for me :)

So, I'm headed to New York on Thursday. Even though the infusion reactions are pretty violent themselves, it's nice to know... I have some good days to look forward to. Some good, BALD, days may I add (by next week) too. The SGN has pretty much destroyed any hope of hair left. So, the buzzers will be coming out next week. 

Let's hope I can still rock that bald look ;)

Hope everyone had a wonderful 4th of July. 

I'll be posting soon on one of my good days :) 

And, showing you this BEAUTIFUL apartment that I am blessed to be living in. 

Lots of Love,

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!

I'll take it!

Although there was a serious emotional hit from the scans, something has changed physically after this last infusion...

What may you ask? I actually feel (gasp) good.

I have much to update everyone on, as I'm starting to formulate a plan again for life :) and the future. The pieces feel like they're starting to fit together, little by little. Even, if the treatment does not work with the increased dose, I am starting to feel emotionally and physically strong enough again to start  another battle, with a different treatment -- if need be.

To note, things that are going well: I haven't needed fluids in two weeks, I have energy, I am eating more and more (maintaining my weight), my counts haven't seemed to take a hit (yet), I am finally done blood draws on Sundays, so this past weekend I was able to visit friends from undergrad in CT, and spend the entire weekend with them, which has been the best medicine of all. And the most smiles and laughter I've had in a long, long time. 

Things are far, far, from perfect. But, for at least a week or two, I've been feeling good. And, I'm going to ride this wave for as long as it allows.  I leave for NY again for infusion number four on the 27th.  We will pow wow with Dr. O, and determine when a CT or X-ray will be since now we've done two infusions with the higher dose (1.8) instead of the lower dose (1.2). Most likely it will be soon.

For now, its been a calm, lovely, and beautiful week/end with friends.  Friends, who I have never, in my life felt more grateful for...

'In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.'

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

Big News :)

This is a little bit of shocking news, hence the 'oh my gosh!' gasping face I am posting for all of you... what a difference a week makes!

And by the way, I apologzie, you will all have to suffer with these type of shots, if any, because unfortunately my camera is still in Boston.  So I am unable to shoot pics with friends. Anyway, lets get to the good stuff...

Thursday Diane and I hoofed it back to NYU for my 'check up.' I will have these weekly 'check ups' for the next five weeks, as protocol for the clinical trial. One of the blood tests that is looked at weekly is my ESR or your SED rate, my nurse practictioner defines it as the following:


ESR is a blood test that we monitor with our Hodgkin’s patients.  It is a non-specific test that measures inflammation and in HD it can sometimes correlate with active disease when elevated.

ESR  is also known as = erythrocyte (Red blood cells) sedimentation rate or your SED rate: rate at which erythrocytes settle out of anticoagulated blood in 1hr.  This test is based on the fact that inflammatory and necrotic processes cause an alteration in blood proteins making the red blood cells stick together, causing them to become heavier and more likely to fall rapidly.  The faster the erythrocytes fall the higher the ESR level.

The normal range is different for men and women – for females, a normal 'healthy' range is between: 0-20

So, before treatment my ESR rate was 130, signifying that there was definitely a moderate to significant amount of disease within my body.  But you would not believe the news I received today.... After one infusion, a week later my ESR level was at a 5! A NORMAL range! This test does not ultimately tell us for 'sure' what is going on specifically with my disease, only a PET/CT scan will do that. However, this is REALLY good news for a small blood test, it alludes that although I haven't had any horrible side effects... that this treatment, is definitely doing its work on the cancer.

For now, we hold onto these good moments, and just keep on keepin on..... (while smiling!).

Sending Love,

B!

Blue eyes...

First SGN infusion...

The SGN-35 went as smooth and as calm as I am in this picture just resting. I even feel a bit better after the infusion, and my eyes seem to be returning a bit to their normal hue of blue.  As you can tell, I feel as I'm barely waking out of this bad dream, and I don't want to get my hopes up (too high).

But after the infusion on Thursday, I did not have any adverse reactions, nor more fatigue. We hold onto this. And hope, that this will be a small turning point for some healing in my body and my mind.

Here's to more sunshine, and more blue.

B

Pulling the plug...

After another week of vomiting, being bed ridden, losing weight, and losing some of my mental stamina, I decided to pull the plug on the SAHA.  In general. I have been in bed since mid November, missing lots of hours of my internship, and the last weeks of my semester classes.

On top of that, I've bounced between Dana Farber Hospital, NYU hospital, and Doylestown Hospital. Although I did have a response to the drug, there comes a time in many refractory patients lives where they have to ask the question - to themeselves:


Do I have a quality of life here? 

The truth, the reality is, we know I will never be cured. So, we try with all our might to manage what time I have left here, with specific treatments. To me, laying in bed, vomiting, watching TV everyday, and sleeping 24/7 is not a quality of life.

My weight is also tettering at around 100lbs which is scary in itself if I were to have some kind of infection, I hardly have any reserves or anything to fight back with. So, the decision was made yesterday, that I will discontinue the Verinostat (SAHA), it's even hard to believe in 2 months I lost 20 lbs -- to me, it makes the choice a lot easier.

Honestly, I'm weak in many ways right now physically and emotionally. But will hopefully have enough time to rebuild my body for the next tretment (SGN-35), which poses some pretty horrific side effects as well. SGN has a side effect known as neuropothy, several of my friends who are on it now can hardly feel their feet, legs, or hands, and are almost -- asking to be put in a wheel chair.

Slowly, I'm learning, that I'm losing my motivation for treatments, and pondering how much more my (our - other refractory folks) can take. It's sad that when I'm not on any treatments, I feel absolutely wonderful. But, once I have to take a dose of something, my body violently reacts to it.

I know I am here, I know I should be thankful.
But how far would you go, to stay alive?
How many drugs would you take, just to lay in bed everyday?

These questions unfortunately keep arising.
So, that is the news for now. Off the SAHA --
onto the new treatment most likely in late February or March.

Hope you all are keeping warm.

B

One foot in front of the other...

Even though I feel somewhat calm about my decisions thus far for treatment, there are still calls, appointments, and schedules to be set.

On top of that I started my second to last semester for my Master's program this week.

So, I'm a teeny bit stressed.

So... what has she decided? Might you ask:
We will start with a clinical trial at Columbia, with Dr. O'conner, most likely starting next week.

However, there has been a major hold-up. The pathology slides that had been sent out to Dana Farber, were lost for about a week. We finally found them in doctors office at DF, and they've been sent back to Upenn, as of yesterday. Thus, we can finally send these slides to Columbia (Where Doctor O'Conner will be treating me). But, we can't set the wheels into motion until they have all of my information.

Most likely, next week I will commute from Boston to NY. (Once a week for about 4-5 weeks), to start this trial. Since the SGN-35 Trial (CD-30 Antibody drugs) is closed at the moment, my decision on what class of drugs to start with was fairly easy. So, we will start with the H-DAC drugs.

This specific trial is: PXD101, it is through oral pills; however, it is a study focused on solid tumors. Hodgkin's disease however, is a liquid tumor. So this trial is for 'lymphoma's.' I'm optimistic under Dr. O'conner's care, but my gutt tells me, that I have a better shot at maintaining this disease under the anti-body drugs (SGN-35). Only time will tell. Thankfully, I do not have any major B-symptoms, except for a small drop in weight.

I know this is horribly confusing. Just know, I have a plan A (PXD) and a plan B (SGN). My plan B will not be available for me until sometime around November or December. Since that specific trial is closed at the moment. But, it will re-open in a few months.

So for now, we start with PXD, which is a phase II trial, that focuses on lymphoma, and under great care of a doctor. We will scan once a month. After the second month, if there is more progression of my disease than not. I will discontinue this trial, and hopefully just jump into plan B. If the disease progresses too much, we might need to go back to chemo for a month. But, lets not get a head of ourselves.

I hope my lack of energy doesn't translate into negativity. Because that is not the case. It's honestly, just been a very, very, draining week. Making calls, starting classes, researching trials, being on the phone for hours trying to hunt down slides, talking to doctors. But know, I feel comfortable with what I have in front of me. I just wanted to update, to let everyone know what the next few months will look like.

Plan A: PDX
* Once a week for 4 to 5 weeks in NY, to check in with O'conners team, blood work, tests, ect. (Then only once a month, after we get through the first month)
* Oral pills, 14 days on, 7 days off.
* minimal side effects (fatigue, nausea, gi issues)
* Scans every four weeks

Things that have nothing to do with cancer that I am thankful/happy about

* classes that I love
* being with friends, and welcoming fall with open arms
* starting to volunteer as a literacy aid 2-3 times a week starting in october
* signed up for a yoga class
* knowing, i'm still here. and will be, for longer than most think.
* and hair! For those going through transplant -- this is just shy of five months out.



Personally, I am taking off the next few days from cancer (can she do that?) heh. Yes, I can. Going to focus on my first paper and readings of the semester, fixing up my apartment, going to a sox game, and relax before Plan A begins.

I'll share more about the trial, next week.
Sending out my love
to all of you,

B

Cancer's a full-time job

Yesterday I had the lovely opportunity to wake up at six am, drive five hours to New York, and spend the day at Columbia, only to arrive home in Philly at 11pm. After last week, meeting with my Upenn doctors and people at Dana Farber, I'm feeling as if having cancer is a full-time job between the traveling, the meetings, and the time spent at hospitals.

Thank god for three day weekends. Which mine was excellent, hope yours was as well :)

Okay, the points. Get to the points... I'm updating, now instead of later on in the week (which I'll be doing that too), because we found out a TON of information yesterday from a lovely Doctor by the name of Dr. O'conner at Columbia. IF you are a relapser, and feel as though you have no where to turn. GO TO COLUMBIA. Find this man, and pick his brain. Adrienne's mother, Alison referred me to him. And he is a god send.

Basically from speaking with him, and his team. We have ruled out a few things. No allo-transplant (which is what my head was thinkin' anyway). There is no point, at the moment, to do one. We have too many options on the table. And, to put it bluntly, it would be more of a suicide mission at this point, the way my body is.

His main points of the meeting were:
* Let's build your body back up this year
* Let's stay away from chemo for as long as we can, since the cancer is used to chemo and being resistent
*Let's give you some quality of life, let you go out and live for a year or so before we throw some big guns in here.

It was a complete relief to here him speak. To talk to someone who is a doctor, and said, that I have had too much chemo over the last two years, and we need to give my body a break. Because, although I still have that 'fight' mentality, I am tired! God, I'm tired. Of chemotherapy.

So, if we're not taking the transplant or chemo route, you ask... what are you doing then Bekah?
(I'm exhausted, so bear with me talking to myself please...)

There are two options on the table for clinical trials. Two types of drugs that are new to research, not life threatening, and showing results in reductions of disease. These two classes of drugs are called H-DAC inhibitors and antibody drugs.

H-DAC verse Antibody, that is the question.

H-DAC (Phase II/I Trial)stands for: Histone deacetylase.
H-DAC are a class of enzymes that remove acetyl groups from an ε-N-acetyl lysine amino acid on a histone.

Bekah's Definition: H-DAC is a group of enzymes that basically are released into your body, to find the cancer cells. They then selectively effect (by damage or killing) a part of the cancer cell's DNA by taking out/destroying a piece of it's strand. The thought is, if a piece of the cancer's DNA can be damaged, this changes the cancer, and because it does not have the same identity, it dies off, becomes stagnant, or regresses in some form. It's almost as if the cancer is still there - but now we've taken a piece of it away (like a puzzle), without the complete puzzle. The cancer is shut off, and it can not grow without all of its parts.

CD-30 Antibodies (Phase II/I Trial)
However, antibodies kill the cancer cells in a different way. Seattle Genetics can define it a lot better than me. Their definition for antibodies are: drugs consisting of an anti-CD30 monoclonal antibody attached by a proprietary, enzyme-cleavable linker to a derivative of the highly potent class of cell-killing drugs called Auristatins. The ADC binds to receptors on target cells, undergoes rapid internalization and then releases active drug from the antibody carrier inside the cell. The linkage system is highly stable in plasma. Thus, SGN-35 is designed to have low toxicity and high specificity for antigen positive target cells.

Bekah's definition: Think of this like a magnet. The drugs are released into my body the cancer cells are a positive, the drugs (the anti-body) is a negative. They are attracted to each other like a magnet, once they find each other in my body, the drugs release a toxic agent, and poof! the cells supposedly die off.

So... those are the two types of drugs we're dealing with. I'm much more familiar with the antibodies than H-VAC drugs. So, I have to do more reading, and hopefully I can explain better after this week. Either way, both are clinical trials. And the good thing about trials is, I will be scanned almost every month I am on them; therefore, if one is not working. We move on to the next, and don't waste any time. Once we try two or three, we might need to intervene with some chemo to beat the disease back a bit. But that is doable, since I am chemo sensitive. And then, we will try another trial...The hard part about trials is to decide which one to pick. Both are offered in NYC. One is offered by Dr. O'Conner whose focus is relapsed/recurrent and refractory lymphomas.

He is also an advocate and supporter of the Alese Coco foundation, Fight 2 Win. Which is an incredible foundation dedicated and remembering the life of Alese Coco, a young Hodgkin's warrior who passed away last year.

However, I have lots of fellow Hodgkin's fighters, that I personally know, who are going through the SGN-35 trial (antibodies), that are seeing reductions in their disease. So, to say that this is a hard decision, is an understatement. At least, the more information I gather, I am slowly crossing things off the list.

So for now:
1. No transplant within this year (another auto, or an allo could still be options later on)
2. No hard chemo within the next 4-5 months
3. Focusing on clinical trials that give me a quality of life, and have minimal side effects.

Oh, and I didn't mention -- (Edit to add: only H-DAC drugs are oral pills, antibodies are infusions) some of these clinical trials are taken orally. That's right. I get to take a pill each day, no infusions. Now that is amazing. And, for now, all we can do is hope that one of these trials will reduce my disease, or keep it the same size. At this stage we are just trying to 'manage' the disease. It is not in any major organs, or bone marrow, so it really does not affect my daily life all that much.

Lastly, I apologize if this seems very confusing. It is! Even for me, who understands most of this stuff. And I truly, truly appreciate everyone who has taken the time to read up on my story. Believe it not, the more informed YOU are, the easier it is for ME. It's so nice to talk to friends or family, that have read my entry. And can fully discuss things with me, to help decide or give me their input on my next steps. You have no idea how much easier it is, if you have done your homework too ;)

Just know, I am trying to make the best decisions I possibly can, with the best doctors in the country. I'm hoping some of this information helps some of you follow my next steps. I'm headed out the door to Upenn this morning for the day, to rehash some of this stuff over with my transplant oncologist, who is sensible, understanding, and wants the best for me in the long and short run. And will have a family meeting tonight, to discuss more on this topic.

I'm hoping after this week, I will have a firm and final grasp of what I would like to attempt to do in the next three to four months, along with pursuing my Master's degree. In which I hope to walk, with my class, this May.

Alright, another day, another cancer center.
Sending all my love
to all of you,

B!

Not a waste

Warning: Looong Post.

The last three days have been very informational. And, I feel as though I know my options fairly well right now. So, I will share my knowledge with all of you...

Here is what we're looking at:

One) Radiation is not an option right this second. The disease turns out is in my spleen, and a few nodes outside of my spleen. Radiation is primarily used for localized (in one spot - that's for Kate Hansen!) areas in the body. You can do complete radiation to the entire body, but we have other options before we pull out the Rads card. And, I'd like to explore those options before I hurt my good cells :) and bone marrow through radiation.

Two) The other option given to me is a min-allo transplant. A mini-allo transplant would be the same thing that I just went through as an auto transplant, except instead of receiving my OWN cells, I would receive a donor's cells. The issue with an allo transplant is, that it is much more risky. And, the aftermath could result in lots of complications (GVHD or even death). GVHD is Graft verse Host disease. And, it's honestly a horrible way to die. Basically the donor's cells do not recognize the host (me!) body. Therefore, instead of eating away just the cancer, it can eat away the good cells or organs too. The cure rate for a mini-allo is 10-15%. The chance of receiving GVHD is 15-20%. It's a scary thought, but still in the back of my head. And there are some great success stories out there (like Duane and Eric) who are both young men that are totally putting fear aside and going for their shot of a cure, because that was the right step for them. But a mini-allo takes a lot of effort, and the doctors (at least at Dana Farber) feel that I am not ready for this step, so soon after my transplant. Maybe in a year or two, if we run out of options, but not right now.

If you want to read more about transplant with donor cells and GVHD, you can here.

Three) Clinical Trials. (which it looks like my gut is telling me to do) There are lots of clinical trials out there at the moment. That could potentially put people, like me who have refractory (relapse within three months of remission), into small remissions (amounts of time where there is no disease). One especially, is almost being approved from the FDA (Federal Drug Association), and there has been lots of good feedback on it with minimal side effects.

This drug is called SGN-35

Fellow hodger: Zach is on the SGN-35 at the moment getting treatment at M.D. Anderson. Check out his story, and maybe even donate a little to him and Erin, they are trying to fly back and forth from their home to Houston every three weeks. Which can add up to be a lot of money.

The trial in itself though has had great results, but doesn't necessarily mean a 'cure,' AND, it might not even work. That's what clinical trials are - they are trials. But if it does work, I could be on it for months, even years. It might be a good step to buy me time, let my body build up. And see what else is out there in a year or two, or possibly attempt another transplant.

There is another clinical trial out as well called MGCD0103. This trial is taken orally in a pill form and has show reductions in disease as well.

Fellow Hodger: Adrienne is on this clinical trial at the moment. And although side effects are in her daily life, Adrienne is kicking butt in college and applying for her Master's degree come next fall.

However, with each clinical trial comes risks as well. Maybe not death, but maybe progression in diesease.

Four) The GND cocktail. Gemzar, Navelbine, Doxil. This cocktail is a drug that I could be on, at any time.Meaning, I could go on it now. I could wait and see what the clinical trial does, if it works - then it works. If it doesn't and my disease is getting somewhat out of control, we could put me on GND immediately to buy me more time. Or until I decide to go into transplant again.

Five) Roll over and die. okay, I'm sorry, I couldn't resist ;)

So, those are the options I am faced with at the moment. Believe it or not, I'm in very good spirits. I'm relaxed. For the first time in my life, I know what the future looks like, I know what I'm facing. And, I know what I have in me.

Mentally, I first faced my deepest fears last week.. when an individual asked me if it felt like I was 'wasting my time,' if I knew I would probably die in ten years or so. Or maybe sooner. But the truth is, we have no idea when our time will end. Is an 18 year old who gets in a car accident and dies - wasting their time? Is a 50 year old man who dies of a heart attack, who never had children, never found love, hardly contributed to the outside world - wasting their time? Is a six year old diagnosed with a rare blood disease, who passes away within a year, wasting their time on this earth?

no.

I am not here, wasting time.

Realistically, I could roll over, put the covers over my head, and give up, emotionally. And, no one would argue with me, if that is how I wanted to handle this. But, that is not me. And, I am here to be in the classroom. To teach children how to read. To cheer up survivors I meet in other hospitals, to be there for my family and friends, when needed. Toii defy the odds, over and over and over again. Because I have. That has been my life. To take something, so horrible, and so heartbreaking, and turn it somehow, into (dare I say it) somehow beautiful.

This, me, here... is not a waste.

And for now, that is what I'm going to hold on to. And some friends, who always seem to amaze me with their incredible, amazing support. Dare I say -- I am one of the luckiest people, to have individuals like this in my life, and Boston at my fingertips...

I still have a few more appointments in NY, and then we head back to PA next week. To make a final decision. As always, I will be keeping you all updated.

B!