Absolutely Surreal

This topic has 105 replies, 18 voices, and was last updated 7 years, 4 months ago by _Paul_.

Post

- December 17, 2016 at 6:16 am
- Quote
_Paul_
Participant
I just got another set of scan results today. In a period of 37 days it really picked up the pace. So much so that the radiologist's first comment was "dramatic interval progression in metastatic disease burden". I could list all the organs, lymph nodes, etc., but you get the idea.

The MRI revealed my first brain met, a small 4 x 3 mm lesion in the right caudate head.

The TIL protocol allows for me to continue since the met is under 1cm. The oncologist thinks the risk of zapping it and waiting for a few weeks to see if it bleeds is greater than the risk of prolonging the TIL. However, even though it is now widespread, and even though I have a golf ball size tumor in my right lower lobe, my heart is still strong and my lung function remains at 100%. So I am healthy enough for the TIL. Porobably not the case in a couple of weeks.

Unchecked I have about a month or two left. So if the TIL doesn't work I don't think there will be time for another trial. I have new respect for the term "do or die"!

On the good side, my youngest daughter has volunteered to be a 24×7 caregiver which is required during the week of chemo. And my sisters are flying in from afar (Toronto and San Fran) to help after I am discharged from the ICU. And a lot of friends are volunteering to help with whatever I need, including giving my daughter a break from the caregiving. All that love really helps.

Even though I have my will in order, treatment plan in order, caregivers, etc. it feels like I'm an actor in a movie. I am hoping I come out of this alive, but it is all quite bizarre.

I really hope Josh's new combo treatment works. I pray for everyone suffering (physically or mentally) on this board every day.

– Paul

Viewing 47 reply threads

Replies

- - December 17, 2016 at 6:31 am
  - Quote
  Aloha14
  Participant
  Hi Paul,
  
  While I don't understand all the technical information you wrote about, I'm sorry to hear about your latest report and progression of your cancer. It sounds like you have good family support which seems important. Wishing you good luck.
  - December 18, 2016 at 4:52 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Aloha! I am a very lucky man to have so much support.
    
    – Paul
  - December 18, 2016 at 4:52 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Aloha! I am a very lucky man to have so much support.
    
    – Paul
  - December 18, 2016 at 4:52 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Aloha! I am a very lucky man to have so much support.
    
    – Paul
- - December 17, 2016 at 6:31 am
  - Quote
  Aloha14
  Participant
  Hi Paul,
  
  While I don't understand all the technical information you wrote about, I'm sorry to hear about your latest report and progression of your cancer. It sounds like you have good family support which seems important. Wishing you good luck.
- - December 17, 2016 at 6:31 am
  - Quote
  Aloha14
  Participant
  Hi Paul,
  
  While I don't understand all the technical information you wrote about, I'm sorry to hear about your latest report and progression of your cancer. It sounds like you have good family support which seems important. Wishing you good luck.
- - December 17, 2016 at 6:53 am
  - Quote
  jennunicorn
  Participant
  Oh man Paul, what a crap day all around! Sounds like you still have a good attitude about all of it and family support/help is awesome. It's definitely a surreal experience and I will keep positive thoughts that you WILL get through this!
  - December 18, 2016 at 4:54 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Jenny. I hope that the combo kicks your cancer to the curb as well!
  - December 18, 2016 at 4:54 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Jenny. I hope that the combo kicks your cancer to the curb as well!
  - December 18, 2016 at 4:54 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Jenny. I hope that the combo kicks your cancer to the curb as well!
- - December 17, 2016 at 6:53 am
  - Quote
  jennunicorn
  Participant
  Oh man Paul, what a crap day all around! Sounds like you still have a good attitude about all of it and family support/help is awesome. It's definitely a surreal experience and I will keep positive thoughts that you WILL get through this!
- - December 17, 2016 at 6:53 am
  - Quote
  jennunicorn
  Participant
  Oh man Paul, what a crap day all around! Sounds like you still have a good attitude about all of it and family support/help is awesome. It's definitely a surreal experience and I will keep positive thoughts that you WILL get through this!
- - December 17, 2016 at 10:11 am
  - Quote
  ed williams
  Participant
  Hi Paul, an actor in a movie is a great quote. Yesterday, during my treatment day I said almost the same thing to one of the nurses when she asked me how I was doing. I told her great, I feel like I am Bill Murray in the movie ground hog day. Next month will be 3 years on the trial checkmate 067, and my wish is that this treatment will bring some x-mas magic for you!!!!Best wishes!!!! Ed
  - December 18, 2016 at 4:56 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Bill, er Ed! And thanks for all your informative posts too. I have learned a lot from some of the video links you have posted.
    
    – Paul
  - December 18, 2016 at 4:56 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Bill, er Ed! And thanks for all your informative posts too. I have learned a lot from some of the video links you have posted.
    
    – Paul
  - December 18, 2016 at 4:56 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Bill, er Ed! And thanks for all your informative posts too. I have learned a lot from some of the video links you have posted.
    
    – Paul
- - December 17, 2016 at 10:11 am
  - Quote
  ed williams
  Participant
  Hi Paul, an actor in a movie is a great quote. Yesterday, during my treatment day I said almost the same thing to one of the nurses when she asked me how I was doing. I told her great, I feel like I am Bill Murray in the movie ground hog day. Next month will be 3 years on the trial checkmate 067, and my wish is that this treatment will bring some x-mas magic for you!!!!Best wishes!!!! Ed
- - December 17, 2016 at 10:11 am
  - Quote
  ed williams
  Participant
  Hi Paul, an actor in a movie is a great quote. Yesterday, during my treatment day I said almost the same thing to one of the nurses when she asked me how I was doing. I told her great, I feel like I am Bill Murray in the movie ground hog day. Next month will be 3 years on the trial checkmate 067, and my wish is that this treatment will bring some x-mas magic for you!!!!Best wishes!!!! Ed
- - December 17, 2016 at 10:49 am
  - Quote
  jbronicki
  Participant
  Wow, I’m so sorry Paul and just want to dropkick something. I can’t remember if you are still at MDA, but just like Josh, if you need ANYTHING at all, please ask. We will gladly give your daughter/sisters a break. Or go groceryshopping, etc. Or if you all just need more support. Massive prayers coming your way.
  - December 18, 2016 at 5:02 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Jackie. I continue to be blown away with your generosity. I am back in Seattle, and I am going to have the TIL therapy here (Seattle is my home area).
    
    Happy holidays!
  - December 18, 2016 at 5:02 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Jackie. I continue to be blown away with your generosity. I am back in Seattle, and I am going to have the TIL therapy here (Seattle is my home area).
    
    Happy holidays!
  - December 18, 2016 at 5:02 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Jackie. I continue to be blown away with your generosity. I am back in Seattle, and I am going to have the TIL therapy here (Seattle is my home area).
    
    Happy holidays!
- - December 17, 2016 at 10:49 am
  - Quote
  jbronicki
  Participant
  Wow, I’m so sorry Paul and just want to dropkick something. I can’t remember if you are still at MDA, but just like Josh, if you need ANYTHING at all, please ask. We will gladly give your daughter/sisters a break. Or go groceryshopping, etc. Or if you all just need more support. Massive prayers coming your way.
- - December 17, 2016 at 10:49 am
  - Quote
  jbronicki
  Participant
  Wow, I’m so sorry Paul and just want to dropkick something. I can’t remember if you are still at MDA, but just like Josh, if you need ANYTHING at all, please ask. We will gladly give your daughter/sisters a break. Or go groceryshopping, etc. Or if you all just need more support. Massive prayers coming your way.
- - December 17, 2016 at 2:52 pm
  - Quote
  Bubbles
  Participant
  Oh, Paul!!! I am so sorry. I've have had the thought, "This can't be my life! This can NOT be my life!!!" so many times. I really need to find that d@mn magic wand!! In lieu of that, like everyone else….we are all here for you!!! Your family sounds amazing. I am so thriled you have that support. I am holding you and yours in my heart and just waiting to hear that you've made it through TIL and your melanoma is a thing of the unbelievable past!!! Love, c
  - December 18, 2016 at 5:05 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Celeste, You have a heart of absolute gold, but it is very soft gold, because you are so full of compassion. I found out I am allowed to have my phone and even a tablet in the ICU, so be prepared for some drug induced posts. 😀
    
    – Paul
  - December 18, 2016 at 6:17 pm
    
    Quote
    Bubbles
    Participant
    
    Aswesome, Paulster!!! Absolutely looking forward to some under the influence postings!!!! love, c
  - December 18, 2016 at 6:17 pm
    
    Quote
    Bubbles
    Participant
    
    Aswesome, Paulster!!! Absolutely looking forward to some under the influence postings!!!! love, c
  - December 18, 2016 at 6:17 pm
    
    Quote
    Bubbles
    Participant
    
    Aswesome, Paulster!!! Absolutely looking forward to some under the influence postings!!!! love, c
  - December 18, 2016 at 5:05 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Celeste, You have a heart of absolute gold, but it is very soft gold, because you are so full of compassion. I found out I am allowed to have my phone and even a tablet in the ICU, so be prepared for some drug induced posts. 😀
    
    – Paul
  - December 18, 2016 at 5:05 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Celeste, You have a heart of absolute gold, but it is very soft gold, because you are so full of compassion. I found out I am allowed to have my phone and even a tablet in the ICU, so be prepared for some drug induced posts. 😀
    
    – Paul
- - December 17, 2016 at 2:52 pm
  - Quote
  Bubbles
  Participant
  Oh, Paul!!! I am so sorry. I've have had the thought, "This can't be my life! This can NOT be my life!!!" so many times. I really need to find that d@mn magic wand!! In lieu of that, like everyone else….we are all here for you!!! Your family sounds amazing. I am so thriled you have that support. I am holding you and yours in my heart and just waiting to hear that you've made it through TIL and your melanoma is a thing of the unbelievable past!!! Love, c
- - December 17, 2016 at 2:52 pm
  - Quote
  Bubbles
  Participant
  Oh, Paul!!! I am so sorry. I've have had the thought, "This can't be my life! This can NOT be my life!!!" so many times. I really need to find that d@mn magic wand!! In lieu of that, like everyone else….we are all here for you!!! Your family sounds amazing. I am so thriled you have that support. I am holding you and yours in my heart and just waiting to hear that you've made it through TIL and your melanoma is a thing of the unbelievable past!!! Love, c
- - December 17, 2016 at 2:52 pm
  - Quote
  tschmith
  Participant
  My prayers for you, Paul. Your courage is inspiring. An actor in a movie is such a good description. I feel like that too…
  
  So, praying for improvement in your tumor burden asap!!!! And praying all who are suffering.
  
  Terrie
  - December 18, 2016 at 5:14 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Terrie. It's hard to imagine that anyone going through what we have wouldn't feel that way too. It was never my expectation to be in this particular place right now. But the story is still unfolding, and the cool thing about life is you never know what's going to happen next…
  - December 18, 2016 at 5:14 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Terrie. It's hard to imagine that anyone going through what we have wouldn't feel that way too. It was never my expectation to be in this particular place right now. But the story is still unfolding, and the cool thing about life is you never know what's going to happen next…
  - December 18, 2016 at 5:14 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Terrie. It's hard to imagine that anyone going through what we have wouldn't feel that way too. It was never my expectation to be in this particular place right now. But the story is still unfolding, and the cool thing about life is you never know what's going to happen next…
- - December 17, 2016 at 2:52 pm
  - Quote
  tschmith
  Participant
  My prayers for you, Paul. Your courage is inspiring. An actor in a movie is such a good description. I feel like that too…
  
  So, praying for improvement in your tumor burden asap!!!! And praying all who are suffering.
  
  Terrie
- - December 17, 2016 at 2:52 pm
  - Quote
  tschmith
  Participant
  My prayers for you, Paul. Your courage is inspiring. An actor in a movie is such a good description. I feel like that too…
  
  So, praying for improvement in your tumor burden asap!!!! And praying all who are suffering.
  
  Terrie
- - December 17, 2016 at 3:45 pm
  - Quote
  Patrisa
  Participant
  Dear Paul,
  
  i'm sooo sorry your results are not better, but thank god you have options…
  
  I will be praying and hoping your treatment will be just what the doctor ordered…
  
  Take care,
  
  Patrisa
  - December 18, 2016 at 5:20 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Patrisa,
    
    I truly appreciate the prayers. I think this disease is mentally harder on the caregivers than it is the patients. It's awesome what Keytruda is doing for your dad.
    
    – Paul
  - December 18, 2016 at 5:20 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Patrisa,
    
    I truly appreciate the prayers. I think this disease is mentally harder on the caregivers than it is the patients. It's awesome what Keytruda is doing for your dad.
    
    – Paul
  - December 18, 2016 at 5:20 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Patrisa,
    
    I truly appreciate the prayers. I think this disease is mentally harder on the caregivers than it is the patients. It's awesome what Keytruda is doing for your dad.
    
    – Paul
- - December 17, 2016 at 3:45 pm
  - Quote
  Patrisa
  Participant
  Dear Paul,
  
  i'm sooo sorry your results are not better, but thank god you have options…
  
  I will be praying and hoping your treatment will be just what the doctor ordered…
  
  Take care,
  
  Patrisa
- - December 17, 2016 at 3:45 pm
  - Quote
  Patrisa
  Participant
  Dear Paul,
  
  i'm sooo sorry your results are not better, but thank god you have options…
  
  I will be praying and hoping your treatment will be just what the doctor ordered…
  
  Take care,
  
  Patrisa
- - December 17, 2016 at 6:54 pm
  - Quote
  Michelle820
  Participant
  Dear Paul,
  
  Sending you many thoughts and prayers your way. Stay strong and keep up with your positive attitude. Never give up! Wish I could help you and make this all go away. You are strong!!!!
  - December 18, 2016 at 5:22 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Michelle, and I am glad you have that WLE behind you.
    
    – Paul
  - December 18, 2016 at 5:22 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Michelle, and I am glad you have that WLE behind you.
    
    – Paul
  - December 18, 2016 at 5:22 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Michelle, and I am glad you have that WLE behind you.
    
    – Paul
- - December 17, 2016 at 6:54 pm
  - Quote
  Michelle820
  Participant
  Dear Paul,
  
  Sending you many thoughts and prayers your way. Stay strong and keep up with your positive attitude. Never give up! Wish I could help you and make this all go away. You are strong!!!!
- - December 17, 2016 at 6:54 pm
  - Quote
  Michelle820
  Participant
  Dear Paul,
  
  Sending you many thoughts and prayers your way. Stay strong and keep up with your positive attitude. Never give up! Wish I could help you and make this all go away. You are strong!!!!
- - December 17, 2016 at 8:08 pm
  - Quote
  casagrayson
  Participant
  Oh, Paul! NOT the news you wanted to hear. The good news is that you still have a plan of attack, and you are a Cushing's warrior! Don't give up hope!
  - December 18, 2016 at 5:26 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Susan. As Terry Gilliam said in the Holy Grail, "I'm not dead yet!". And if one is not dead, there is always hope. 😀
    
    – Paul
  - December 18, 2016 at 5:26 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Susan. As Terry Gilliam said in the Holy Grail, "I'm not dead yet!". And if one is not dead, there is always hope. 😀
    
    – Paul
  - December 18, 2016 at 5:26 am
    
    Quote
    _Paul_
    Participant
    
    Thanks Susan. As Terry Gilliam said in the Holy Grail, "I'm not dead yet!". And if one is not dead, there is always hope. 😀
    
    – Paul
- - December 17, 2016 at 8:08 pm
  - Quote
  casagrayson
  Participant
  Oh, Paul! NOT the news you wanted to hear. The good news is that you still have a plan of attack, and you are a Cushing's warrior! Don't give up hope!
- - December 17, 2016 at 8:08 pm
  - Quote
  casagrayson
  Participant
  Oh, Paul! NOT the news you wanted to hear. The good news is that you still have a plan of attack, and you are a Cushing's warrior! Don't give up hope!
- - December 17, 2016 at 10:28 pm
  - Quote
  JoshF
  Participant
  Hi Paul. I was able to get in this morning and sat with my family a bit and crashed afterwards. I'm at a loss here. I'm glad you can still do TIL. I wish MDA would let me go for it while I'm healthy enough. Giving you a month is such a short time frame. These oncologists know less than we think. Just 3 weeks ago I was supposed to give it time. Now they're real concerned and pushing for this treatment. You and I have just had this crap take off on us. I don't understand and they certainly don't either. I let them cut out 2 tumors for research. I know my chances aren't greatest but hopefully data they get can help someone. I'm so sick of this crap. Know that I'm praying for you, TIL is tough but if it works!!!! You'll be on my mind my friend.
  
  Josh
  - December 18, 2016 at 5:34 am
    
    Quote
    _Paul_
    Participant
    
    That is the thing. How it just accelerated like this for both of us. Maybe one day they will understand this stuff better, but for now, in spite of all the advances that have been made in the last couple of years, we are still in the dark ages. All the docs can do is make educated guesses and its still in the realm of magic juju.
    
    I let them take some chunks out of Zaphod as well (the sub-q on my right shoulder). It bled like a stuck pig! It is a trip looking at the jet black chunks of evil as they put them in the specimen tube.
    
    We both just have to hang in there. And thank you for thinking of me as your friend. I definitely feel that way about you.
    
    – Paul
  - December 18, 2016 at 1:09 pm
    
    Quote
    JoshF
    Participant
    
    I wish they did get it, we might have better chances. I do like the TIL option. I really wish I was doing it but I'd have to wait to make sure brain mets are stable and by that time it could take liver over and that's it. Everything is reactionary now and that scares me. When things were proactive there was a sense of comfort. You know the interesting thing about majority of my tumor biopsies are that there usually isnt pigmentation. Typically there is yellow in them (necrosis). The golf ball they took out of my shoulder was white, then had some dark rings with yellow in center. Anyway let's push forward my friend and pray we have a Merry Xmas in 2017. All the best to you as you prepare to embark on this treatment.
    
    Josh
  - December 18, 2016 at 6:06 pm
    
    Quote
    _Paul_
    Participant
    
    I didn't know that, about the necrotic bits being yellow. You just inspired me for a new wish for all us: "may all your tumors be nothing but yellow".
    
    I'm all for the Merry 2017 Christmas. Sounds like a plan!
    
    – Paul
  - December 18, 2016 at 6:06 pm
    
    Quote
    _Paul_
    Participant
    
    I didn't know that, about the necrotic bits being yellow. You just inspired me for a new wish for all us: "may all your tumors be nothing but yellow".
    
    I'm all for the Merry 2017 Christmas. Sounds like a plan!
    
    – Paul
  - December 18, 2016 at 6:06 pm
    
    Quote
    _Paul_
    Participant
    
    I didn't know that, about the necrotic bits being yellow. You just inspired me for a new wish for all us: "may all your tumors be nothing but yellow".
    
    I'm all for the Merry 2017 Christmas. Sounds like a plan!
    
    – Paul
  - December 18, 2016 at 1:09 pm
    
    Quote
    JoshF
    Participant
    
    I wish they did get it, we might have better chances. I do like the TIL option. I really wish I was doing it but I'd have to wait to make sure brain mets are stable and by that time it could take liver over and that's it. Everything is reactionary now and that scares me. When things were proactive there was a sense of comfort. You know the interesting thing about majority of my tumor biopsies are that there usually isnt pigmentation. Typically there is yellow in them (necrosis). The golf ball they took out of my shoulder was white, then had some dark rings with yellow in center. Anyway let's push forward my friend and pray we have a Merry Xmas in 2017. All the best to you as you prepare to embark on this treatment.
    
    Josh
  - December 18, 2016 at 1:09 pm
    
    Quote
    JoshF
    Participant
    
    I wish they did get it, we might have better chances. I do like the TIL option. I really wish I was doing it but I'd have to wait to make sure brain mets are stable and by that time it could take liver over and that's it. Everything is reactionary now and that scares me. When things were proactive there was a sense of comfort. You know the interesting thing about majority of my tumor biopsies are that there usually isnt pigmentation. Typically there is yellow in them (necrosis). The golf ball they took out of my shoulder was white, then had some dark rings with yellow in center. Anyway let's push forward my friend and pray we have a Merry Xmas in 2017. All the best to you as you prepare to embark on this treatment.
    
    Josh
  - December 18, 2016 at 5:34 am
    
    Quote
    _Paul_
    Participant
    
    That is the thing. How it just accelerated like this for both of us. Maybe one day they will understand this stuff better, but for now, in spite of all the advances that have been made in the last couple of years, we are still in the dark ages. All the docs can do is make educated guesses and its still in the realm of magic juju.
    
    I let them take some chunks out of Zaphod as well (the sub-q on my right shoulder). It bled like a stuck pig! It is a trip looking at the jet black chunks of evil as they put them in the specimen tube.
    
    We both just have to hang in there. And thank you for thinking of me as your friend. I definitely feel that way about you.
    
    – Paul
  - December 18, 2016 at 5:34 am
    
    Quote
    _Paul_
    Participant
    
    That is the thing. How it just accelerated like this for both of us. Maybe one day they will understand this stuff better, but for now, in spite of all the advances that have been made in the last couple of years, we are still in the dark ages. All the docs can do is make educated guesses and its still in the realm of magic juju.
    
    I let them take some chunks out of Zaphod as well (the sub-q on my right shoulder). It bled like a stuck pig! It is a trip looking at the jet black chunks of evil as they put them in the specimen tube.
    
    We both just have to hang in there. And thank you for thinking of me as your friend. I definitely feel that way about you.
    
    – Paul
- - December 17, 2016 at 10:28 pm
  - Quote
  JoshF
  Participant
  Hi Paul. I was able to get in this morning and sat with my family a bit and crashed afterwards. I'm at a loss here. I'm glad you can still do TIL. I wish MDA would let me go for it while I'm healthy enough. Giving you a month is such a short time frame. These oncologists know less than we think. Just 3 weeks ago I was supposed to give it time. Now they're real concerned and pushing for this treatment. You and I have just had this crap take off on us. I don't understand and they certainly don't either. I let them cut out 2 tumors for research. I know my chances aren't greatest but hopefully data they get can help someone. I'm so sick of this crap. Know that I'm praying for you, TIL is tough but if it works!!!! You'll be on my mind my friend.
  
  Josh
- - December 17, 2016 at 10:28 pm
  - Quote
  JoshF
  Participant
  Hi Paul. I was able to get in this morning and sat with my family a bit and crashed afterwards. I'm at a loss here. I'm glad you can still do TIL. I wish MDA would let me go for it while I'm healthy enough. Giving you a month is such a short time frame. These oncologists know less than we think. Just 3 weeks ago I was supposed to give it time. Now they're real concerned and pushing for this treatment. You and I have just had this crap take off on us. I don't understand and they certainly don't either. I let them cut out 2 tumors for research. I know my chances aren't greatest but hopefully data they get can help someone. I'm so sick of this crap. Know that I'm praying for you, TIL is tough but if it works!!!! You'll be on my mind my friend.
  
  Josh
- - December 18, 2016 at 10:30 am
  - Quote
  Mat
  Participant
  Paul/Josh, I tried to search for words of inspiration or wisdom. I don't have any. You both have children and I know of no better inspiration than that to move forward. Paul, I hope you get good results with TIL. Josh, keep working on your plan, pushing your medical teams. Eventually a good plan will develop.
  - December 18, 2016 at 6:33 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Mat. You are so right. I have a lot to live for.
    
    – Paul
  - December 18, 2016 at 6:33 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Mat. You are so right. I have a lot to live for.
    
    – Paul
  - December 18, 2016 at 6:33 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Mat. You are so right. I have a lot to live for.
    
    – Paul
- - December 18, 2016 at 10:30 am
  - Quote
  Mat
  Participant
  Paul/Josh, I tried to search for words of inspiration or wisdom. I don't have any. You both have children and I know of no better inspiration than that to move forward. Paul, I hope you get good results with TIL. Josh, keep working on your plan, pushing your medical teams. Eventually a good plan will develop.
- - December 18, 2016 at 10:30 am
  - Quote
  Mat
  Participant
  Paul/Josh, I tried to search for words of inspiration or wisdom. I don't have any. You both have children and I know of no better inspiration than that to move forward. Paul, I hope you get good results with TIL. Josh, keep working on your plan, pushing your medical teams. Eventually a good plan will develop.
- - December 18, 2016 at 2:03 pm
  - Quote
  keepthefaith11
  Participant
  Paul, just wanted to let you know that you are in my prayers. Praying that this treatment will do the trick so that you can go on with your life and enjoy your family without these worries.
  
  Annie
  - December 18, 2016 at 6:34 pm
    
    Quote
    _Paul_
    Participant
    
    Thank you Annie. Prayers are a big deal for me.
    
    – Paul
  - December 18, 2016 at 6:34 pm
    
    Quote
    _Paul_
    Participant
    
    Thank you Annie. Prayers are a big deal for me.
    
    – Paul
  - December 18, 2016 at 6:34 pm
    
    Quote
    _Paul_
    Participant
    
    Thank you Annie. Prayers are a big deal for me.
    
    – Paul
- - December 18, 2016 at 2:03 pm
  - Quote
  keepthefaith11
  Participant
  Paul, just wanted to let you know that you are in my prayers. Praying that this treatment will do the trick so that you can go on with your life and enjoy your family without these worries.
  
  Annie
- - December 18, 2016 at 2:03 pm
  - Quote
  keepthefaith11
  Participant
  Paul, just wanted to let you know that you are in my prayers. Praying that this treatment will do the trick so that you can go on with your life and enjoy your family without these worries.
  
  Annie
- - December 18, 2016 at 5:54 pm
  - Quote
  jenny22
  Participant
  Paul….
  
  I am soooo sad to read your latest news…..glad to see you have people to help, and provdie care…hoping TIL helps quickly.
  
  I am just so damn sad for you, and josh, and anyone going through this…..
  
  I am always waiting for the next shoe to drop…..
  
  Sending you good thoughts and lots of hope for improvemnt.
  
  Best,
  
  jenny
- - December 18, 2016 at 5:54 pm
  - Quote
  jenny22
  Participant
  Paul….
  
  I am soooo sad to read your latest news…..glad to see you have people to help, and provdie care…hoping TIL helps quickly.
  
  I am just so damn sad for you, and josh, and anyone going through this…..
  
  I am always waiting for the next shoe to drop…..
  
  Sending you good thoughts and lots of hope for improvemnt.
  
  Best,
  
  jenny
- - December 18, 2016 at 5:54 pm
  - Quote
  jenny22
  Participant
  Paul….
  
  I am soooo sad to read your latest news…..glad to see you have people to help, and provdie care…hoping TIL helps quickly.
  
  I am just so damn sad for you, and josh, and anyone going through this…..
  
  I am always waiting for the next shoe to drop…..
  
  Sending you good thoughts and lots of hope for improvemnt.
  
  Best,
  
  jenny
- - December 19, 2016 at 2:55 am
  - Quote
  snow white
  Participant
  Dear Paul. Just want you to know that I am rooting for you, thinking of you and praying for you. I have no idea what TIL is, but whatever it is, I hope it works for you. It is so darn frustrating to see everything that this beast is doing to people, good people, kind people, Dads, Moms, kids, sisters, brothers etc. I HATE it!!!
  
  Please know that you have a big group of people cheering you on! You can do this! I will look with anticipation for your updates, nothing like a ICU feeling no pain kind of update 🙂
  
  Stay Strong!
  
  Jen
- - December 19, 2016 at 2:55 am
  - Quote
  snow white
  Participant
  Dear Paul. Just want you to know that I am rooting for you, thinking of you and praying for you. I have no idea what TIL is, but whatever it is, I hope it works for you. It is so darn frustrating to see everything that this beast is doing to people, good people, kind people, Dads, Moms, kids, sisters, brothers etc. I HATE it!!!
  
  Please know that you have a big group of people cheering you on! You can do this! I will look with anticipation for your updates, nothing like a ICU feeling no pain kind of update 🙂
  
  Stay Strong!
  
  Jen
- - December 19, 2016 at 2:55 am
  - Quote
  snow white
  Participant
  Dear Paul. Just want you to know that I am rooting for you, thinking of you and praying for you. I have no idea what TIL is, but whatever it is, I hope it works for you. It is so darn frustrating to see everything that this beast is doing to people, good people, kind people, Dads, Moms, kids, sisters, brothers etc. I HATE it!!!
  
  Please know that you have a big group of people cheering you on! You can do this! I will look with anticipation for your updates, nothing like a ICU feeling no pain kind of update 🙂
  
  Stay Strong!
  
  Jen
- - December 19, 2016 at 10:18 pm
  - Quote
  Jubes
  Participant
  Hey Paul. As they say be prepared for the worst and expect the best. Sounds like that's what you are doing. And we are all cheering you on and hoping for a good outcome. So good that you have your family there routingc for you. We all have you in our hearts. Could be any one of us in the same situation and you would do your best to support us too.
  
  anne-Louise
  - December 20, 2016 at 10:19 pm
    
    Quote
    _Paul_
    Participant
    
    That is it Anne-Louise, expect the worst but hope for the best. My will is in order, funeral and grave paid for, long talks with family, early Christmas, etc. But yeah, I hope to remain above ground as long as I can.
    
    – Paul
  - December 20, 2016 at 10:19 pm
    
    Quote
    _Paul_
    Participant
    
    That is it Anne-Louise, expect the worst but hope for the best. My will is in order, funeral and grave paid for, long talks with family, early Christmas, etc. But yeah, I hope to remain above ground as long as I can.
    
    – Paul
  - December 20, 2016 at 10:19 pm
    
    Quote
    _Paul_
    Participant
    
    That is it Anne-Louise, expect the worst but hope for the best. My will is in order, funeral and grave paid for, long talks with family, early Christmas, etc. But yeah, I hope to remain above ground as long as I can.
    
    – Paul
- - December 19, 2016 at 10:18 pm
  - Quote
  Jubes
  Participant
  Hey Paul. As they say be prepared for the worst and expect the best. Sounds like that's what you are doing. And we are all cheering you on and hoping for a good outcome. So good that you have your family there routingc for you. We all have you in our hearts. Could be any one of us in the same situation and you would do your best to support us too.
  
  anne-Louise
- - December 19, 2016 at 10:18 pm
  - Quote
  Jubes
  Participant
  Hey Paul. As they say be prepared for the worst and expect the best. Sounds like that's what you are doing. And we are all cheering you on and hoping for a good outcome. So good that you have your family there routingc for you. We all have you in our hearts. Could be any one of us in the same situation and you would do your best to support us too.
  
  anne-Louise
- - December 20, 2016 at 1:05 am
  - Quote
  BrianP
  Participant
  Hey Paul,
  
  Praying and wishing you the best possible outcome. I so admire your positive attitude and kind spirit.
  
  I really like your choice for TIL. It has always been on my shortlist but the stars have never quite aligned for me to get into a trial.
  
  Do you know if Dr. Yee is involved in your trial? I know he bounces back and forth from MDA to Seattle but I'm not sure which research center in Seattle. I've spoken with him a few times at MDA and really like him.
  
  You've probably said elsewhere but when do you start? Please keep us updated when you can.
  
  Brian
  - December 20, 2016 at 10:37 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Brian.
    
    I have not bumped into Dr. Yee, so far it's Sylvia Lee and Dr. Maloney.
    
    I actually started today with the high dose cytoxin. I'm hooked up to an IV as I type this. I really like SCCA here in Seattle. They corroborate with MDA and NIH, but my clinic itself is a single seven story building, so much more personal than, say, MDA or Johns Hopkins. A week of this and I get my TIL next Tuesday, but in the ICU at University of Washington Medical Center.
    
    – Paul
  - December 22, 2016 at 7:38 am
    
    Quote
    adriana cooper
    Participant
    
    Paul, I hope you are doing well. Sad to hear of the downturn. If you could send a PM or email of your floor or room number and last name to [email protected]
    
    I would like to drop something off for you.
    
    I tried the last email you gave me but no go.
    
    Rob
  - December 22, 2016 at 7:22 pm
    
    Quote
    _Paul_
    Participant
    
    I sent this to your email but including here just in case.
    
    Hi Rob and Adriana,
    
    We have really been having a fight with this beast. It's great too hear from you as always.
    
    For the next 5 days I am in room 7206. My chemo picks up again at noon so I think I am the most lucid in the morning.
  - December 22, 2016 at 7:22 pm
    
    Quote
    _Paul_
    Participant
    
    I sent this to your email but including here just in case.
    
    Hi Rob and Adriana,
    
    We have really been having a fight with this beast. It's great too hear from you as always.
    
    For the next 5 days I am in room 7206. My chemo picks up again at noon so I think I am the most lucid in the morning.
  - December 22, 2016 at 7:22 pm
    
    Quote
    _Paul_
    Participant
    
    I sent this to your email but including here just in case.
    
    Hi Rob and Adriana,
    
    We have really been having a fight with this beast. It's great too hear from you as always.
    
    For the next 5 days I am in room 7206. My chemo picks up again at noon so I think I am the most lucid in the morning.
  - December 22, 2016 at 7:38 am
    
    Quote
    adriana cooper
    Participant
    
    Paul, I hope you are doing well. Sad to hear of the downturn. If you could send a PM or email of your floor or room number and last name to [email protected]
    
    I would like to drop something off for you.
    
    I tried the last email you gave me but no go.
    
    Rob
  - December 22, 2016 at 7:38 am
    
    Quote
    adriana cooper
    Participant
    
    Paul, I hope you are doing well. Sad to hear of the downturn. If you could send a PM or email of your floor or room number and last name to [email protected]
    
    I would like to drop something off for you.
    
    I tried the last email you gave me but no go.
    
    Rob
  - December 20, 2016 at 10:37 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Brian.
    
    I have not bumped into Dr. Yee, so far it's Sylvia Lee and Dr. Maloney.
    
    I actually started today with the high dose cytoxin. I'm hooked up to an IV as I type this. I really like SCCA here in Seattle. They corroborate with MDA and NIH, but my clinic itself is a single seven story building, so much more personal than, say, MDA or Johns Hopkins. A week of this and I get my TIL next Tuesday, but in the ICU at University of Washington Medical Center.
    
    – Paul
  - December 20, 2016 at 10:37 pm
    
    Quote
    _Paul_
    Participant
    
    Thanks Brian.
    
    I have not bumped into Dr. Yee, so far it's Sylvia Lee and Dr. Maloney.
    
    I actually started today with the high dose cytoxin. I'm hooked up to an IV as I type this. I really like SCCA here in Seattle. They corroborate with MDA and NIH, but my clinic itself is a single seven story building, so much more personal than, say, MDA or Johns Hopkins. A week of this and I get my TIL next Tuesday, but in the ICU at University of Washington Medical Center.
    
    – Paul
- - December 20, 2016 at 1:05 am
  - Quote
  BrianP
  Participant
  Hey Paul,
  
  Praying and wishing you the best possible outcome. I so admire your positive attitude and kind spirit.
  
  I really like your choice for TIL. It has always been on my shortlist but the stars have never quite aligned for me to get into a trial.
  
  Do you know if Dr. Yee is involved in your trial? I know he bounces back and forth from MDA to Seattle but I'm not sure which research center in Seattle. I've spoken with him a few times at MDA and really like him.
  
  You've probably said elsewhere but when do you start? Please keep us updated when you can.
  
  Brian
- - December 20, 2016 at 1:05 am
  - Quote
  BrianP
  Participant
  Hey Paul,
  
  Praying and wishing you the best possible outcome. I so admire your positive attitude and kind spirit.
  
  I really like your choice for TIL. It has always been on my shortlist but the stars have never quite aligned for me to get into a trial.
  
  Do you know if Dr. Yee is involved in your trial? I know he bounces back and forth from MDA to Seattle but I'm not sure which research center in Seattle. I've spoken with him a few times at MDA and really like him.
  
  You've probably said elsewhere but when do you start? Please keep us updated when you can.
  
  Brian