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!

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!