I'm having a rough week... Was in the shower last night and found a pea size hard lump under my right armpit, not good. I've emailed Dr. Ram and hoping to get in to see him asap. Kinda hoping they want to remove it and biopsy it so I don't have to feel it and I have fresh tissue to send to other trial sites around the country as they usually require this. This is assuming it's progression of my disease. I can't imagine what else it would be being directly in my axillary area of lymph nodes under my arm. I had 3 removed here before on my last biopsy and it caused lymphodema so that would be my only concern (besides Hodgkins of course).
I'm trying to stay calm but it's really tough. No matter how many times you discover something isn't working and the disease is progressing it always freaks you out. Just hoping I can get into the RAD001 trial here as it had a 53% response rate in Phase 1. Yeah, flipping the coin at this point is about as good as I can get. So, it looks like New York may be done, I think I've done pretty much everything I wanted to do there except see a show and do the museums. That's touristy stuff anyway right?! I had a chance to experience the real New York with people who actually live there and don't think you can beat that.
So, I take a deep breath, a Clonazepam and hope for the best.
By the way, my prayers and good thoughts go out to my Auntie Linda who's mother passed (from what else, cancer). She was a very sweet Lady and know her family will miss her. See you guys at the funeral tomorrow.
Chris
5 comments:
Chris,
Thanks for your advice on the Hodge board. Your disease is progressing a lot like mine did while on the trial. It started with a pea size lump in my clavicle area but then another small lump appeared in the same area you are feeling. The thing is, a lot of smaller lumps started appearing here and there but none were big enough to call it disease progression. then one day, they all said enough is enough and grew a lot quicker, some faster than others. Now, as you know, I'm not saying that this is happening to you. But I am saying that it looks more and more likely that it may be. It could be the way the nodes react to the drug. Please do your best to deal and I'll do the same on my end. I'm around watching baseball, hoping the Cubs get Jim Leyland and would be happy to answer any question even the dumbest, most worrisome.
Michael
You are having a rough week. Hang in there!!
chris I know its hard to see through the fear that one gets when they find a new lump. as you know I have been in your exact same position back in the fall I found what I thought was a new mass in my aux node area of my arm pit...my biggest mistake was to assume it was progression...as I got everyone scared including my docs and worst of all I made myself into a complete wreck!!! in the end once they took a scan it was not HL at all. So I know it is hard but try not to jump to conclusions just get yourself into your hematologist/oncologists office have your doc look at you and get a scan.... dont jump to the biopsy and that its more HL assumption until you have the basic tests as your only heading down a scary path for no reason. take a deep breath... and go do some thing that makes you happy get your mind off it...
but dont ignore it either. Im hoping that it is nothing and if it is that you can get into the new trial that your hoping for!!! just remember one step at a time try not to jump to conclusions...
prayers for your aunt....and for you as well.
i hope you get on the treatment you are looking into!
Chris, I am so sorry to read that you are having this tough time right now! I think of you often. You will get through this. You are my hero!
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