@dzndef
Forum Replies Created
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- October 29, 2019 at 7:05 am
Hi Barb! Great to see you’re still posting about Leisal. Sorry you guys are going through a rough time right now. I’d just like to mention that I’ve had two craniotomies and they have been the easiest surgeries to recover from. Almost no pain post-op. It’s usually the skin and muscles that hurt the most after surgery, but we don’t move our scalps much so the pain is pretty much non-existant. In my case, they were digging in to my brain both times so it might be a bit different. They cut out a section of my skull but put it back with some bolts and sewed my scalp back together.. Is hair loss a concern for her? While that might seem minor, it can be a struggle to maintain a sense of normalcy while going through all this. That’s one reason I take long breaks from the board. I like to pretend I’m fine. Another reason I stay off is that I want to give people hope and my situation continues to evolve. No NED for me for a while now.. on the plus side, I am still around three years after brain mets so that’s cool. Best of luck to you and Leisel (sp?).
Cheers!
Maggie -
- April 9, 2019 at 7:30 pm
Hey Hanlon,
I hope you get some good information soon. It can be frustrating but in my experience, medical professionals can make mistakes. My first tumor was found in my lung and was fully excised and diagnosed as aspindle cell carcinoid tumor originating in the lung with no lymphnode involvement. I had no idea they could get the diagnosis wrong with the entire tumor sitting in front of them. Evidently, it is not an exact science and several cancers carry similar markers so the pathologists become detectives using other clues. In the meantime, you might end up with the wrong treatment. In my case, I did no treatment as the surgery was deemed curative. I got the correct diagnosis when I had a recurrence and the original tumor was then re-evaluated. At the time, approved treatments for advanced melanoma were not highly successful so I suppose no harm no foul. I still found it frustrating to not know for certain what it was that I had. Best of luck getting your situation figured out.
Cheers!
Maggie
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- March 30, 2019 at 12:28 am
Thanks for responding, everyone. Looks like no new voices chimed in so maybe we’re just an odd bunch. I forgot to mention it to Rock Star Doc and his Rock Star NP. Maybe next time. Meanwhile, the world keeps turning (or is it spinning?)
Cheers!
Maggie
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- March 27, 2019 at 5:48 am
Hi Annie,
My situation is completely different than yours, I just wanted you to know that if you hear the worst, you still have time. Don’t rush decisions. I told myself to never commit to a treatment decision on the same day I was presented with it. You can always get some advice and research and sleep on it at least one night. Committing to not making same-day decisions helped to relieve some anxiety for me. I was already stage IV when I learned I had cancer and that was in 2012. I still have it but I’m also still here. There is a very good chance you will wake up tommorrow and for many years to come. They’re getting pretty good at keeping us alive long enough for something else to kill us. Hang in there.
Cheers!
Maggie
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- March 27, 2019 at 1:06 am
Julie! So glad there was an upside to your TVEC adventure. I am seeing the rock star tomorrow to decide on next treatment. Leaning towards chemo at this point since my tumors seem to have sped up, but open to suggestions and recommendations. My mets are all living in my subq fat and lymph nodes. No where immediately dangerous, thankfully. I like the idea of chemo at this point because I know it targets fast-growing/dividing cells. My mel was seriously indolent when I first found it but it is more speedy Gonzales these days. So chemo might have an impact now.
I hope to read that your mets have completely disappeared soon.
Cheers!
Maggie
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- October 29, 2019 at 11:01 pm
Hey, Julie! Great to see that you continue to be active here. Rock star doc has done well by me as I am still kicking.. Running low on options if my current treatment plan (Yervoy) doesn’t pan out. But it will. Even so, It’s nice to have a backup plan ready to go in case (thanks to Artie for that idea). Just provides some piece of mind as not every treatment works for every patient. Rock Star doc and all my team have done a great job keeping me around long enough to try “the next thing”. And the next thing might do the trick for me. My NED is out there, I just need to hang around long enough to find it. Kudos to my team for keeping me in the game. Special shout out to Christine, NP, for keeping me going when RS Doc is out of town. They make a great team. My whole team is great as my longevity would indicate. I need to update my profile so it is clear who all that is. Keep conquering the beasts!
Cheers!
Maggie -
- October 29, 2019 at 10:34 pm
Hi Celeste! I am thrilled to see that you continue to be active helping people out. We have not always agreed on some issues but I have a huge amount of respect for your passion to help others and your phenomenal knowledge on treatments. I expect you are done with your treatment of the other cancer you had to deal with. Is there a link you could provide t a recap of your experience? I hope you are doing well.
Cheers!
Maggie -
- October 29, 2019 at 10:27 pm
Hi Christiane,
I will be having gamma knife on Halloween. 2019. My current systemic treatment is Yervoy (too soon to know if it is helping elsewhere). I might be looking for a trial next but not sure if I would qualify for anything having gone through lots of treatments and having an active brain met. We shall see.. -
- April 3, 2019 at 11:42 pm
Barb! Thank you so much for your kind words. I am thrilled to read that Leisa is doing well (per your profile update). I hope she continues to do well. How is she doing apart from melanoma? Is her vision improved at all? Did she suffer any lasting effects from her brain bleeds or the WBR? It’s great to win the battle (and hopefully for Leisa, the war) but it can still leave us with some battle scars. I hope hers are minimal.
Cheers!
Maggie
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- March 28, 2019 at 4:45 pm
Hey Paul, thanks for the feedback. I’ve done both Pembro and Nivo and don’t appear to be a responder to either at this point. Evidently, though, that can change after doing other treatments. Congrats on your NED status! I look forward to joining you there before too long. Thanks for your response.
Cheers!
Maggie
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