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