› Forums › General Melanoma Community › overdue update
- This topic has 21 replies, 7 voices, and was last updated 11 years, 5 months ago by
LuckyMan51.
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- September 19, 2014 at 10:22 pm
Hello everyone!
I've been pretty absent for a while. I was accepted into Merk's PD-1 EAP back in June right after a round of gamma knife on several small brain mets and had been waiting until my recheck scans to give an update, even though things seemed to be going well. Those scans happened on Sept 2, and I got the results Sept 3. I had been hoping to just be able to post a good update, and as far as the chest/abdome/pelvis it was great news with all previous tumors being reduced in size by at least half, if not basically gone. Unfortunately, the MRI was pretty terrible with 4-5 small, but new mets and one large right frontal mass that again was new but the growth had been so incredibly rapid it was too large for radiation, had central necrosis, and had started to bleed- none of which are ok.
This result sent things a bit into overdrive, especially since I had not had any signs of there being a problem in the brain- no symptoms at all (which I realize is rather lucky) but there was not going to be any waiting around for something to pop up. So after quite a bit of scrambling to get the course I was just hired to teach a couple of months ago in order I had a craniotomy on the 17th (Tuesday). I spent 1 night in ICU (as was expected) then was doing well enough that they moved me out to a regular recovery room. I was expecting to stay there until at least today, more likely tomorrow, but they surprised me by releasing me yesterday afternoon. I had not had any symptoms prior to the surgery and was placed (still on) prophylactic anti-seizure meds and steroids to try and prevent any issues (which are continuing for a while post-op) but even I was surprised about how well I was doing and once the physical therapist cleared me to be able to handle a few stairs they let me go. For which I was very grateful- not only to get somewhere more restful than a hospital but also because my "room-mate" in the surgery recovery room was starting to reveal that she had 25+ years of TB exposure and they had removed a large lung abcess the day after my craniotomy. I have enough problems without adding TB to the list so the second they said we could go we ran. I'm being careful, taking my meds, and not pushing myself too hard, but pretty pleased at how good I feel, how little pain, how good my appetite is, etc. My mom is going to come up and stay for several days starting Sunday and that will be helpfull so that my husband can get back to work without worrying about getting me around, the house, or anything else.
Mostly I get some occasional, relatively mild and short lived sinus pressure, the incision site looks good (well, kind of gross, but not infected) but is pretty tender to the touch and there's so much gunk (soap, etc) in my hair that I can literally hear it crackle on my head, but I'm feeling pretty lucky all the way around, I think. Technically I would be due this coming week for another PD-1, but that may not happen- I need to have an appointent on Tuesday to check in and see what the status of that may be- we'll see. Otherwise, I'll be headed back for another gamma knife in a few weeks to treat the smaller ones and the healing site from the craniotomy (want to give that area a little bit of healing time first). I'd kind of like to not miss a PD-1 dose, because it's going so well everywhere else, but we'll see what happens.
Things have been so crazy I really haven't even had much time to read this forum, let alone respond to anyone, so I am sorry for that. I hope that everyone is well and moving along in a positive direction. I've got a couple of days here where I'm not supposed to be doing much though so perhaps I can catch up a bit.
Anyway, best of luck to everyone out there battling this very frustrating disease!
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- September 20, 2014 at 12:48 am
Wow! What an ordeal you've been through! I hope you are taking some time now to relax and take it easy and let other folks do the heavy lifting and worrying for a while. Time to catch your breath!
You really got a mixed bag of results there. Very strange. It will be interesting to hear what your doc says on Tuesday. The fact that your largest new tumor was partially necrotic seems promising? Maybe its just a delayed response (one that unfortunately delayed too long in that case). Thanks for updating us and please do post again when you learn more. Glad you are doing ok right now and here's a "yippee" for the mets that shrank (let's hope its contagious to the rest of them).
Maggie
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- September 20, 2014 at 12:48 am
Wow! What an ordeal you've been through! I hope you are taking some time now to relax and take it easy and let other folks do the heavy lifting and worrying for a while. Time to catch your breath!
You really got a mixed bag of results there. Very strange. It will be interesting to hear what your doc says on Tuesday. The fact that your largest new tumor was partially necrotic seems promising? Maybe its just a delayed response (one that unfortunately delayed too long in that case). Thanks for updating us and please do post again when you learn more. Glad you are doing ok right now and here's a "yippee" for the mets that shrank (let's hope its contagious to the rest of them).
Maggie
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- September 20, 2014 at 12:48 am
Wow! What an ordeal you've been through! I hope you are taking some time now to relax and take it easy and let other folks do the heavy lifting and worrying for a while. Time to catch your breath!
You really got a mixed bag of results there. Very strange. It will be interesting to hear what your doc says on Tuesday. The fact that your largest new tumor was partially necrotic seems promising? Maybe its just a delayed response (one that unfortunately delayed too long in that case). Thanks for updating us and please do post again when you learn more. Glad you are doing ok right now and here's a "yippee" for the mets that shrank (let's hope its contagious to the rest of them).
Maggie
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- September 20, 2014 at 1:27 am
Thanks for the update ecc26. I'm so happy that you aren't experiencing any symptoms from the brain mets. I hope you get that next dose. It's obviously doing you a lot of good. Hopefully the brain will follow suit. Maybe the gamma knife might help to kick start the process in the brain. Best of luck in the next couple weeks.
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- September 20, 2014 at 1:27 am
Thanks for the update ecc26. I'm so happy that you aren't experiencing any symptoms from the brain mets. I hope you get that next dose. It's obviously doing you a lot of good. Hopefully the brain will follow suit. Maybe the gamma knife might help to kick start the process in the brain. Best of luck in the next couple weeks.
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- September 20, 2014 at 1:27 am
Thanks for the update ecc26. I'm so happy that you aren't experiencing any symptoms from the brain mets. I hope you get that next dose. It's obviously doing you a lot of good. Hopefully the brain will follow suit. Maybe the gamma knife might help to kick start the process in the brain. Best of luck in the next couple weeks.
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- September 20, 2014 at 1:52 am
Wow. You continue to go through so much. You are such a fighter. I have been wondering how things were going.
Great to hear the PD1 is working great almost everywhere. Now to get those stupid mets in the head to do the same. The gamma knife should help and I really hope you can continue on the PD1 and beat this stupid disease. If you can't continue yet the PD1 is still there in you working hard. You will get back to having more of it.
Monday I will be done radiating the tumor in my head and 2 in my spine. They want to do a neck MRI Monday too cause of neck issues I started having. Might be the c2 tumor or probably just strained neck muscles from the radiation mask and clamp. We shall see. Then Tuesday I get my next pd1 with no missed doses yet.
Hang in there. Rest. Eat good. Exercise some. Get your strength back. You are such an inspiration. You have to stay strong and beat this thing. You are almost there to the dreamed of NED and as a bonus you are feeling pretty good too. That is awesome. Next year this time you will be telling people your story of how you made it to the EAP. How you went through surgery and radiation. How you beat everything and are NED for many months.
Stay strong. Take care.
Artie
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- September 20, 2014 at 1:52 am
Wow. You continue to go through so much. You are such a fighter. I have been wondering how things were going.
Great to hear the PD1 is working great almost everywhere. Now to get those stupid mets in the head to do the same. The gamma knife should help and I really hope you can continue on the PD1 and beat this stupid disease. If you can't continue yet the PD1 is still there in you working hard. You will get back to having more of it.
Monday I will be done radiating the tumor in my head and 2 in my spine. They want to do a neck MRI Monday too cause of neck issues I started having. Might be the c2 tumor or probably just strained neck muscles from the radiation mask and clamp. We shall see. Then Tuesday I get my next pd1 with no missed doses yet.
Hang in there. Rest. Eat good. Exercise some. Get your strength back. You are such an inspiration. You have to stay strong and beat this thing. You are almost there to the dreamed of NED and as a bonus you are feeling pretty good too. That is awesome. Next year this time you will be telling people your story of how you made it to the EAP. How you went through surgery and radiation. How you beat everything and are NED for many months.
Stay strong. Take care.
Artie
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- September 20, 2014 at 1:52 am
Wow. You continue to go through so much. You are such a fighter. I have been wondering how things were going.
Great to hear the PD1 is working great almost everywhere. Now to get those stupid mets in the head to do the same. The gamma knife should help and I really hope you can continue on the PD1 and beat this stupid disease. If you can't continue yet the PD1 is still there in you working hard. You will get back to having more of it.
Monday I will be done radiating the tumor in my head and 2 in my spine. They want to do a neck MRI Monday too cause of neck issues I started having. Might be the c2 tumor or probably just strained neck muscles from the radiation mask and clamp. We shall see. Then Tuesday I get my next pd1 with no missed doses yet.
Hang in there. Rest. Eat good. Exercise some. Get your strength back. You are such an inspiration. You have to stay strong and beat this thing. You are almost there to the dreamed of NED and as a bonus you are feeling pretty good too. That is awesome. Next year this time you will be telling people your story of how you made it to the EAP. How you went through surgery and radiation. How you beat everything and are NED for many months.
Stay strong. Take care.
Artie
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- September 20, 2014 at 10:53 am
Thank you everyone for your kind words and support! They do mean a lot. I sincerely wish all of you the best with your journeys as well. There's always hope- sometimes it gets momentarily dashed, but it's always there, just have to keep going, climbing and not giving up. It's worth it- all of us have far too much to live for and new ideas and therapies are coming all the time. Just keep going… you'll, we'll all get there one day!
Please know that absences from this forum do not mean I'm not thinking of you all! I think of you every day and hope for all the best for each of you!
Best of luck to everyone on their continued journies and may we all win in the end!
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- September 20, 2014 at 10:53 am
Thank you everyone for your kind words and support! They do mean a lot. I sincerely wish all of you the best with your journeys as well. There's always hope- sometimes it gets momentarily dashed, but it's always there, just have to keep going, climbing and not giving up. It's worth it- all of us have far too much to live for and new ideas and therapies are coming all the time. Just keep going… you'll, we'll all get there one day!
Please know that absences from this forum do not mean I'm not thinking of you all! I think of you every day and hope for all the best for each of you!
Best of luck to everyone on their continued journies and may we all win in the end!
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- September 20, 2014 at 10:53 am
Thank you everyone for your kind words and support! They do mean a lot. I sincerely wish all of you the best with your journeys as well. There's always hope- sometimes it gets momentarily dashed, but it's always there, just have to keep going, climbing and not giving up. It's worth it- all of us have far too much to live for and new ideas and therapies are coming all the time. Just keep going… you'll, we'll all get there one day!
Please know that absences from this forum do not mean I'm not thinking of you all! I think of you every day and hope for all the best for each of you!
Best of luck to everyone on their continued journies and may we all win in the end!
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- September 22, 2014 at 11:04 am
You probably know this but I mention just as precaution because I didn't when I was prescribed steroids. Steroids prescribed for post surgical swelling have a side effect of lowering your immune response so you can be more sensitive to colds, flu, infection, etc. I had a 2 1/2 year old nephew with a full on runny nose raging cold come over with some family members for a visit 3-4 days after my brain surgery. In my weakened immune response position I was crushed with fever, chills, etc and taken to the ER and then re admitted back into MSK. The week or so recovery from this bug was far worse than the recovery from the brain surgery. It sounds like you are doing great. Good luck with the recovery and getting back on the Pd-1 quickly.
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- September 22, 2014 at 11:04 am
You probably know this but I mention just as precaution because I didn't when I was prescribed steroids. Steroids prescribed for post surgical swelling have a side effect of lowering your immune response so you can be more sensitive to colds, flu, infection, etc. I had a 2 1/2 year old nephew with a full on runny nose raging cold come over with some family members for a visit 3-4 days after my brain surgery. In my weakened immune response position I was crushed with fever, chills, etc and taken to the ER and then re admitted back into MSK. The week or so recovery from this bug was far worse than the recovery from the brain surgery. It sounds like you are doing great. Good luck with the recovery and getting back on the Pd-1 quickly.
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- September 22, 2014 at 11:04 am
You probably know this but I mention just as precaution because I didn't when I was prescribed steroids. Steroids prescribed for post surgical swelling have a side effect of lowering your immune response so you can be more sensitive to colds, flu, infection, etc. I had a 2 1/2 year old nephew with a full on runny nose raging cold come over with some family members for a visit 3-4 days after my brain surgery. In my weakened immune response position I was crushed with fever, chills, etc and taken to the ER and then re admitted back into MSK. The week or so recovery from this bug was far worse than the recovery from the brain surgery. It sounds like you are doing great. Good luck with the recovery and getting back on the Pd-1 quickly.
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