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.
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)
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!
It's all in the eyes. For most cancer patients. For me, I can always tell when my body is rebounding in some form or another by mine. The grey hues come out when my blood counts are down. And, like today, the blue-ness of feeling good, pierces through most pictures. I feel good. I feel ready.
