I just completed my second maintenance treatment-what a doozy. I know it's only a couple of days in the hospital this time, but those 2 days are kinda rough. This go- around I experienced numbness in my arms and hands which was really annoying because it caused me to not sleep so well. I also gained 15 lbs of fluids (which is a lot in 2 days) and that wasn't fun either. The only thing getting me through it is knowing that the recovery is faster. Less than 2 days and I feel "normal" again (which isn't normal but at least functioning).
The other thing that is keeping me going is that the remaining tumor is continuing to shrink. YEAH! As long as that bugger keeps on getting smaller, than I'm that much closer to becoming "cancer free". I know that doesn't mean that I'm out of the woods yet (because for most folks, the cancer comes back), but if it buys me some time at least until another newer treatment breakthrough comes out, then I will remain optimistic about the future. There's nothing I can do to control what happens in the future, so I am trying to just live in the NOW and enjoy life as much as I can under these circumstances. And the other good news is that my blood counts are UP and I'm almost not anemic anymore!
3 comments:
Hi- I've been following your journey and you're so inspiring! Would you share what type of treatment you're taking? My dad is about to start the braf/mek combo trial at Vanderbilt in Nashville, TN. I'm always on the look out for what he may need to try next if need be. Thanks for sharing your story, I wish you the best with this terrible thing called melanoma!
I actually just finished biochemotherapy-it consisted of IL-2, Vinblastine, Cysplatin, Temodar, and Interferon. In addition, my doctor put me on Avastin. 5 of my 6 tumors completely disappeared with the 1 remaining continuing to shrink (and is metabolically inactive). I am now doing a year of just IL-2 and Avastin. It's a very tough therapy, but it was the best option for ME as a first-line therapy. I am BRAF negative, so that isn't an option for me in the future, but if it were to come back, Ipilumumab would probably be the next treatment. I'm just hoping to buy myself a few years, because you never know what's coming in the future!
Thanks so much for responding! My dad is my connection to melanoma, actually my grandpa and my aunt too-both passed away due to melanoma (on my dad's side). Obviously very strong family gene going on there. I have the same skin type so all of this has made me a complete nut about skin checks, seeing derms, researching and helping my dad find the best treatments. But my dad has stage IV mel. and has done lots to try to keep the tumors away: tumor removal (several times), a bit of interferon (didn't work), radiation (didn't work) and 2 rounds of IL-2 (didn't work) so now we're on to the clinical trials. From what I know he has 4 tumors- 2, I believe are in the lungs but since I don't live close to my parents, I can't get specific answers as to how many he has but I'm sure the trial will give us that exact amount. I don't think he wants to know, he just wants them gone. It's been a rough year (2010) when we first found out in March we thought it was just at stage 2 and things looked to be clear but as you know melanoma has a way of coming back and it came back strong. His sister died just 4 months later has stage IV mel.( but still not certain how she died) after he was first diagnosed-at that time we still thought he was okay but a month later it came back. Talk about irony and the worst timing.
Just hoping this braf/mek combo trial works for my dad and if or when it stops working, ipi will probably be the next step like you.
I admire your strength with two little ones (precious by the way) and I sincerely hope you can beat this thing! Sounds like things are going well for you, even though the treatment is rough. Stay strong for those boys and may you have many, many more years with them!
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