I apologize if I have not gotten back to you tonight. or today.
Lots of people called and emailed, and to say the least I just had a very, very long day.
So good news or bad news?
It appears that my disease is 'stable.' With the preliminary report. Which is good. However, because of my low platelets, I most likely will not be on this trial much longer. My body does not seem to be handling the drug very well, and every other week I'm on and off.
They begin this trial with 40 mgs, then each time my platelets plummet, they hold the drug for a week and await for them to rebound. Next dose, I was lowered to 30, last week I was at 20, and now, with only twenty-something platelets today, I will be lowered most likely to 15 mgs.
Although, I have a very strong spirit. I know, I have a very, very weak body. And so, the doctors today basically think, within the next three weeks. I will again go through the motions -- take the drug, watch my counts dive, and then... Well, they don't go lower than 15 mgs.
So - good news. No new disease, as it appears from this point. So, I have a few spots still in my chest. Bad news is, that it looks like its the end of the line for this trial by the end of December. For other hodger's who are reading this... the LBH589 trial works, well is working for many. And many, their numbers are not diving. I am, to say the least, not the norm. Unique. Heh.
The LBH, is now heading into a phase II trial, just for Hodgkin's Lymphoma. And, I do recommend it for those who have relapsed after their transplant.
Luckily, my family and I have already discussed the next steps. Since, we knew this was occuring with my blood levels. In which, I will update all of you, in the next day or so. It will be at DF, and it appears, not that toxic.
So, we will see.
In my eyes, there are always more options...
promising trials and research.
Sending Love to you all,
Bekah
7 comments:
I'm so glad there's no new hodge. I hope you're feelin' a lil better since I saw you earlier! Let's do that movie day soon missy... and let me know if you need anything!
XO
Stable disease can be a pretty good thing. I wish there was a way to give you extra platelets though.
You sound balanced and focused.
Rebecca: I think of you often and today I found your blog page info in my desk drawer. I wish you the best, stay strong as I know you are. I will now keep viewing youir blog to see how you are doing regularly
I accidently sent my note anonymous..this is Marie Walton from HUP
Bekah,
I'm sorry to hear of the setback you're going through. Good news with the scan, bad news everywhere else. You're strong and you'll get through this with whatever arsenal the docs at DF can muster.
Good Luck. I'm here to support you.
B
So glad to hear there isn't any new progression of the Hodgkin's. This is AWESOME news!
I continue to be humbled by your optimism and resolve.
Much love.
Onwards and upwards, girly - stable disease is great - just got to whip those stooopid platelets into shape now (they're not my favourite members of the whole blood thing and today they've taken another tumble in my estimation :{ )
Love and hugs winging their way to you - get ready to catch them <3........Vx
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