› Forums › General Melanoma Community › Change in Plans after Progression
- This topic has 72 replies, 21 voices, and was last updated 7 years, 4 months ago by
murphamania.
- Post
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- December 17, 2016 at 12:18 am
I'll keep it short & sweet. The CT at MDA showed liver progression with about 20 tumors. My onc was concerned and didn't want to wait 4 weeks for TIL. Thinks it's too risky. My LDH is astronomically high…I'm scared to say it. So my take away was time is getting short. He called my onc in Chicago and they agreed Keytruda and Abraxene was what we should do. I'm not even going to research, I'm just blown away. Anyone have any insight on this combo? I think Artie did it just don't remember but it made me think of him…just broken hearted. Not to mention my flight home is now cancelled. Just want to hug my wife & kids.
Josh
- Replies
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- December 17, 2016 at 12:51 am
Oh, Joshie. I am so sorry sweetie. I've been logging on every ten minutes today waiting to hear. Shit. Then the flight. Travel for treatment sucks in all kinds of ways, doesn't it? I think starting treatment with anti-PD1 and abraxane right away…at home!!!…is a great first step. Go for it. You can always change gears if you need to. I wish I had a private plane and a magic wand and….well…I would hook you up! I think you get the idea. Hang on. Melanoma sucks great big green hairy wizard balls (my sister who traveled with me for treatment coined that phrase)….but that's no biggie! Right? You have so many people who love you…those you know….and those you don't!
I will be thinking. The only thing I can tell you just now is be sure to take the abraxane that is called NAB abraxane as it has less side effects. Also ask for the scalp cooling jig a boo…to prevent hair loss. What the hell? Go for style and substance!!!
You are very dear to me. Hugs from me and B. Love, celeste
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- December 17, 2016 at 12:51 am
Oh, Joshie. I am so sorry sweetie. I've been logging on every ten minutes today waiting to hear. Shit. Then the flight. Travel for treatment sucks in all kinds of ways, doesn't it? I think starting treatment with anti-PD1 and abraxane right away…at home!!!…is a great first step. Go for it. You can always change gears if you need to. I wish I had a private plane and a magic wand and….well…I would hook you up! I think you get the idea. Hang on. Melanoma sucks great big green hairy wizard balls (my sister who traveled with me for treatment coined that phrase)….but that's no biggie! Right? You have so many people who love you…those you know….and those you don't!
I will be thinking. The only thing I can tell you just now is be sure to take the abraxane that is called NAB abraxane as it has less side effects. Also ask for the scalp cooling jig a boo…to prevent hair loss. What the hell? Go for style and substance!!!
You are very dear to me. Hugs from me and B. Love, celeste
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- December 17, 2016 at 12:51 am
Oh, Joshie. I am so sorry sweetie. I've been logging on every ten minutes today waiting to hear. Shit. Then the flight. Travel for treatment sucks in all kinds of ways, doesn't it? I think starting treatment with anti-PD1 and abraxane right away…at home!!!…is a great first step. Go for it. You can always change gears if you need to. I wish I had a private plane and a magic wand and….well…I would hook you up! I think you get the idea. Hang on. Melanoma sucks great big green hairy wizard balls (my sister who traveled with me for treatment coined that phrase)….but that's no biggie! Right? You have so many people who love you…those you know….and those you don't!
I will be thinking. The only thing I can tell you just now is be sure to take the abraxane that is called NAB abraxane as it has less side effects. Also ask for the scalp cooling jig a boo…to prevent hair loss. What the hell? Go for style and substance!!!
You are very dear to me. Hugs from me and B. Love, celeste
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- December 17, 2016 at 12:53 am
Josh, so sorry to hear what you are going through. I don’t have any wisdom for you. Just wanted you to know Ive been thinking of you all day and although this isnt what you wanted to hear, dont give up yet. Not yet. One day at a time. Lots of prayers coming your way tonight. -
- December 17, 2016 at 12:53 am
Josh, so sorry to hear what you are going through. I don’t have any wisdom for you. Just wanted you to know Ive been thinking of you all day and although this isnt what you wanted to hear, dont give up yet. Not yet. One day at a time. Lots of prayers coming your way tonight. -
- December 17, 2016 at 12:53 am
Josh, so sorry to hear what you are going through. I don’t have any wisdom for you. Just wanted you to know Ive been thinking of you all day and although this isnt what you wanted to hear, dont give up yet. Not yet. One day at a time. Lots of prayers coming your way tonight. -
- December 17, 2016 at 1:06 am
One step at the time is right. You of all people know that this is a chess game. You still have TILs waiting for you right? For some reason, I have heard so many recoveries with TIL treatment that I think you still have a few cards to play.
One step at the time. (look who's preaching now!)
Prayers right your way.
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- December 17, 2016 at 1:06 am
One step at the time is right. You of all people know that this is a chess game. You still have TILs waiting for you right? For some reason, I have heard so many recoveries with TIL treatment that I think you still have a few cards to play.
One step at the time. (look who's preaching now!)
Prayers right your way.
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- December 17, 2016 at 1:06 am
One step at the time is right. You of all people know that this is a chess game. You still have TILs waiting for you right? For some reason, I have heard so many recoveries with TIL treatment that I think you still have a few cards to play.
One step at the time. (look who's preaching now!)
Prayers right your way.
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- December 17, 2016 at 1:20 am
Not really posting this for your consideration now….but….it is something….and dear sweet Eric sent them to me on your behalf….so…when you're ready…there is this:
https://clinicaltrials.gov/ct2/show/NCT02216409?term=cd47&state1=NA%3AUS%3ACA&rank=2
love you. c
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- December 17, 2016 at 1:20 am
Not really posting this for your consideration now….but….it is something….and dear sweet Eric sent them to me on your behalf….so…when you're ready…there is this:
https://clinicaltrials.gov/ct2/show/NCT02216409?term=cd47&state1=NA%3AUS%3ACA&rank=2
love you. c
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- December 17, 2016 at 1:20 am
Not really posting this for your consideration now….but….it is something….and dear sweet Eric sent them to me on your behalf….so…when you're ready…there is this:
https://clinicaltrials.gov/ct2/show/NCT02216409?term=cd47&state1=NA%3AUS%3ACA&rank=2
love you. c
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- December 17, 2016 at 1:47 am
Josh,Did you ask about stereotactic body radiation therapy for your liver? It’s really important for you to find out if this is a option. It might be something you can do at the same time you take the other medications and it HAS been used to treat melanoma in the liver. – You need a expert.
My thoughts and prayers are with you. This is a tough disease to deal with and I know you have the strength to keep going.
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- December 17, 2016 at 1:47 am
Josh,Did you ask about stereotactic body radiation therapy for your liver? It’s really important for you to find out if this is a option. It might be something you can do at the same time you take the other medications and it HAS been used to treat melanoma in the liver. – You need a expert.
My thoughts and prayers are with you. This is a tough disease to deal with and I know you have the strength to keep going.
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- December 17, 2016 at 1:47 am
Josh,Did you ask about stereotactic body radiation therapy for your liver? It’s really important for you to find out if this is a option. It might be something you can do at the same time you take the other medications and it HAS been used to treat melanoma in the liver. – You need a expert.
My thoughts and prayers are with you. This is a tough disease to deal with and I know you have the strength to keep going.
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- December 17, 2016 at 2:07 am
God damn it, F–K! I'm sorry. You mean so much to all of us here…..
Let us know what you need, please. Do the treatment and we are going to frickin' step up the support, that's for gd sure.
Hugs to you (you and your family are welcome to our network and anything we can provide)
Jackie
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- December 17, 2016 at 2:07 am
God damn it, F–K! I'm sorry. You mean so much to all of us here…..
Let us know what you need, please. Do the treatment and we are going to frickin' step up the support, that's for gd sure.
Hugs to you (you and your family are welcome to our network and anything we can provide)
Jackie
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- December 17, 2016 at 2:07 am
God damn it, F–K! I'm sorry. You mean so much to all of us here…..
Let us know what you need, please. Do the treatment and we are going to frickin' step up the support, that's for gd sure.
Hugs to you (you and your family are welcome to our network and anything we can provide)
Jackie
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- December 17, 2016 at 3:06 am
UGH, I want to give a huge middle finger to melanoma for you right now!
This storm continues for you, but it will let up, you got this Josh!
Hugs,
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- December 17, 2016 at 3:06 am
UGH, I want to give a huge middle finger to melanoma for you right now!
This storm continues for you, but it will let up, you got this Josh!
Hugs,
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- December 17, 2016 at 3:06 am
UGH, I want to give a huge middle finger to melanoma for you right now!
This storm continues for you, but it will let up, you got this Josh!
Hugs,
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- December 17, 2016 at 4:30 am
DANG IT!!!!!!!!!!
Grrrrr……I am so sorry that your flight was cancelled on top of the not so good news that you received. Nothing worse than not being able to be with your family when you are not feeling well. THANK GOODNESS you still have options! I am holding on to that for you. PLEASE keep fighting hard, don't loose faith, you have so much to live for. I am praying that this new combo will be the "magic" potion, if not you still have options.
STAY STRONG!!! I don't know you personally, but your kind words to me have made you feel like a friend to me. We are all here for you, just reach out with whatever you need.
XO Jen
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- December 17, 2016 at 4:30 am
DANG IT!!!!!!!!!!
Grrrrr……I am so sorry that your flight was cancelled on top of the not so good news that you received. Nothing worse than not being able to be with your family when you are not feeling well. THANK GOODNESS you still have options! I am holding on to that for you. PLEASE keep fighting hard, don't loose faith, you have so much to live for. I am praying that this new combo will be the "magic" potion, if not you still have options.
STAY STRONG!!! I don't know you personally, but your kind words to me have made you feel like a friend to me. We are all here for you, just reach out with whatever you need.
XO Jen
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- December 17, 2016 at 4:30 am
DANG IT!!!!!!!!!!
Grrrrr……I am so sorry that your flight was cancelled on top of the not so good news that you received. Nothing worse than not being able to be with your family when you are not feeling well. THANK GOODNESS you still have options! I am holding on to that for you. PLEASE keep fighting hard, don't loose faith, you have so much to live for. I am praying that this new combo will be the "magic" potion, if not you still have options.
STAY STRONG!!! I don't know you personally, but your kind words to me have made you feel like a friend to me. We are all here for you, just reach out with whatever you need.
XO Jen
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- December 17, 2016 at 4:37 am
Josh, I'm really sorry you got such tough news … and even sorrier that you had to get it alone. This disease just doesn't play by the rules. Please don't lose hope. You've got the best of the best working with you on this; put your faith in the docs and the new med combos. Know that you've also got a huge support network right here pulling for you — hopefully you feel the prayers and good karma winging their way to you.
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- December 17, 2016 at 4:37 am
Josh, I'm really sorry you got such tough news … and even sorrier that you had to get it alone. This disease just doesn't play by the rules. Please don't lose hope. You've got the best of the best working with you on this; put your faith in the docs and the new med combos. Know that you've also got a huge support network right here pulling for you — hopefully you feel the prayers and good karma winging their way to you.
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- December 17, 2016 at 4:37 am
Josh, I'm really sorry you got such tough news … and even sorrier that you had to get it alone. This disease just doesn't play by the rules. Please don't lose hope. You've got the best of the best working with you on this; put your faith in the docs and the new med combos. Know that you've also got a huge support network right here pulling for you — hopefully you feel the prayers and good karma winging their way to you.
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- December 17, 2016 at 5:22 am
I am really sad to hear this Josh. I hate this stupid disease. I've never met you but the vibe "really good person" shines through your postings. I am right behind you. I found out today mine is spreading faster and faster, now I'm a member of the brain met club too. However, you are still alive and you have a treatment plan already in place. I understand being in a dark place but you can't give up hope. You still have hope that this treatment will work.
And like Sole said, you still have your TIL. So even if you don't get 100% from this new combo, If it kicks your mets to the curb enough or holds them at bay for a month, its waiting for you.
– Paul -
- December 17, 2016 at 5:22 am
I am really sad to hear this Josh. I hate this stupid disease. I've never met you but the vibe "really good person" shines through your postings. I am right behind you. I found out today mine is spreading faster and faster, now I'm a member of the brain met club too. However, you are still alive and you have a treatment plan already in place. I understand being in a dark place but you can't give up hope. You still have hope that this treatment will work.
And like Sole said, you still have your TIL. So even if you don't get 100% from this new combo, If it kicks your mets to the curb enough or holds them at bay for a month, its waiting for you.
– Paul-
- December 17, 2016 at 1:44 pm
Josh,
I haven't been on the board for a long time so I was so sorry to hear your news. I truly hope your new treatment works fast and wipes out those nasty mets!! Melanoma truly does suck!! Keep the faith and know you still have TIL treatment and the trial Celeste is suggesting.Hugs to you and your family!!!
Maureen
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- December 17, 2016 at 1:44 pm
Josh,
I haven't been on the board for a long time so I was so sorry to hear your news. I truly hope your new treatment works fast and wipes out those nasty mets!! Melanoma truly does suck!! Keep the faith and know you still have TIL treatment and the trial Celeste is suggesting.Hugs to you and your family!!!
Maureen
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- December 17, 2016 at 1:44 pm
Josh,
I haven't been on the board for a long time so I was so sorry to hear your news. I truly hope your new treatment works fast and wipes out those nasty mets!! Melanoma truly does suck!! Keep the faith and know you still have TIL treatment and the trial Celeste is suggesting.Hugs to you and your family!!!
Maureen
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- December 17, 2016 at 5:22 am
I am really sad to hear this Josh. I hate this stupid disease. I've never met you but the vibe "really good person" shines through your postings. I am right behind you. I found out today mine is spreading faster and faster, now I'm a member of the brain met club too. However, you are still alive and you have a treatment plan already in place. I understand being in a dark place but you can't give up hope. You still have hope that this treatment will work.
And like Sole said, you still have your TIL. So even if you don't get 100% from this new combo, If it kicks your mets to the curb enough or holds them at bay for a month, its waiting for you.
– Paul -
- December 17, 2016 at 3:05 pm
Josh,
We just want you to know we are some of the many mostly silent supporters. As the wife of a patient my love and prayer support are there for your wife too. If there is one thing this awful disease teaches us it is to live and love one day at a time. I pray this is a superior day for you!
Corinne and Randy
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- December 17, 2016 at 3:05 pm
Josh,
We just want you to know we are some of the many mostly silent supporters. As the wife of a patient my love and prayer support are there for your wife too. If there is one thing this awful disease teaches us it is to live and love one day at a time. I pray this is a superior day for you!
Corinne and Randy
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- December 17, 2016 at 3:05 pm
Josh,
We just want you to know we are some of the many mostly silent supporters. As the wife of a patient my love and prayer support are there for your wife too. If there is one thing this awful disease teaches us it is to live and love one day at a time. I pray this is a superior day for you!
Corinne and Randy
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- December 17, 2016 at 3:52 pm
Dear Josh,
i'm so sorry your results are not better, but hopefull that keytruda will be the magic bullet and will kick that stupid mel where it belongs, nowhere near you….
My father is on keytruda, as are maaany other people and are great responders, sooo i remain hopefull this combo will be great for you too…
Something will work for you, i personally swear by keytruda…. You are young and strong and will get through this….
Take care,
Patrisa
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- December 17, 2016 at 3:52 pm
Dear Josh,
i'm so sorry your results are not better, but hopefull that keytruda will be the magic bullet and will kick that stupid mel where it belongs, nowhere near you….
My father is on keytruda, as are maaany other people and are great responders, sooo i remain hopefull this combo will be great for you too…
Something will work for you, i personally swear by keytruda…. You are young and strong and will get through this….
Take care,
Patrisa
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- December 17, 2016 at 3:52 pm
Dear Josh,
i'm so sorry your results are not better, but hopefull that keytruda will be the magic bullet and will kick that stupid mel where it belongs, nowhere near you….
My father is on keytruda, as are maaany other people and are great responders, sooo i remain hopefull this combo will be great for you too…
Something will work for you, i personally swear by keytruda…. You are young and strong and will get through this….
Take care,
Patrisa
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- December 17, 2016 at 10:43 pm
I appreciate all the well wishes and love you all. This has been a community that has continually lifted me and provide comfort & support. I'm seeing my oncologist on Monday. I've got concerns because nivo failed me and I know Keytruda is similar so what are chances of Keytruda kicking in. I'm hoping and praying. I'm so happy to be home with my family. I don't feel great but an LDH of 14x the upper limit will do that. I'm scared guys, more scared for my family. This treatment has to get after this crap. Love to you all!
Josh
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- December 17, 2016 at 10:43 pm
I appreciate all the well wishes and love you all. This has been a community that has continually lifted me and provide comfort & support. I'm seeing my oncologist on Monday. I've got concerns because nivo failed me and I know Keytruda is similar so what are chances of Keytruda kicking in. I'm hoping and praying. I'm so happy to be home with my family. I don't feel great but an LDH of 14x the upper limit will do that. I'm scared guys, more scared for my family. This treatment has to get after this crap. Love to you all!
Josh
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- December 17, 2016 at 10:43 pm
I appreciate all the well wishes and love you all. This has been a community that has continually lifted me and provide comfort & support. I'm seeing my oncologist on Monday. I've got concerns because nivo failed me and I know Keytruda is similar so what are chances of Keytruda kicking in. I'm hoping and praying. I'm so happy to be home with my family. I don't feel great but an LDH of 14x the upper limit will do that. I'm scared guys, more scared for my family. This treatment has to get after this crap. Love to you all!
Josh
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- December 18, 2016 at 4:49 am
Hi Josh,
we have not "spoken" before but I have followed your story and my heart goes out to you.
my husband was in a similar situation with his liver in July. 50% tumour burden in liver and left lobe pretty much taken over. Our Dr at MDA suggested liver radioembolization, Y-90 spheres procedure. It has been done on melanoma patients successfully and remember the liver is very resilient so if you can slow it down and kill it off then the liver will regenerate.
Our Dr is Dr Sapna Patel but we have met all of the Drs there over last few years I think. The interventional radiologist who did the procedures is Dr Mahvesh. He was excellent. Did one procedure for each lobe. After first procedure while prepping for second he could see that some of tumours were starting to shrink.
push for this on Monday if you can. I thought it was nearly over for us but not so. Here we still are fighting…
Maria
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- December 18, 2016 at 4:49 am
Hi Josh,
we have not "spoken" before but I have followed your story and my heart goes out to you.
my husband was in a similar situation with his liver in July. 50% tumour burden in liver and left lobe pretty much taken over. Our Dr at MDA suggested liver radioembolization, Y-90 spheres procedure. It has been done on melanoma patients successfully and remember the liver is very resilient so if you can slow it down and kill it off then the liver will regenerate.
Our Dr is Dr Sapna Patel but we have met all of the Drs there over last few years I think. The interventional radiologist who did the procedures is Dr Mahvesh. He was excellent. Did one procedure for each lobe. After first procedure while prepping for second he could see that some of tumours were starting to shrink.
push for this on Monday if you can. I thought it was nearly over for us but not so. Here we still are fighting…
Maria
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- December 18, 2016 at 4:49 am
Hi Josh,
we have not "spoken" before but I have followed your story and my heart goes out to you.
my husband was in a similar situation with his liver in July. 50% tumour burden in liver and left lobe pretty much taken over. Our Dr at MDA suggested liver radioembolization, Y-90 spheres procedure. It has been done on melanoma patients successfully and remember the liver is very resilient so if you can slow it down and kill it off then the liver will regenerate.
Our Dr is Dr Sapna Patel but we have met all of the Drs there over last few years I think. The interventional radiologist who did the procedures is Dr Mahvesh. He was excellent. Did one procedure for each lobe. After first procedure while prepping for second he could see that some of tumours were starting to shrink.
push for this on Monday if you can. I thought it was nearly over for us but not so. Here we still are fighting…
Maria
-
- December 18, 2016 at 1:13 pm
Oddly enough I've been researching this. Can I ask does your husband have ocular melanoma? I know Dr Patel and she specializes in that and I've also seen that these infusions have been given to ocular melanoma patients so I am curious as to whether or not they do this for patients who don't. I really appreciate the message and hope you see my response.
Josh
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- December 18, 2016 at 6:25 pm
Hi Josh,
No, my husband doesn't have ocular melanoma but you are right that Dr Patel does specialise in ocular, however, back in April 2013 when we first went to MDA, she was assigned to us and so we have stayed with her ever since. In July, she sent us to see Dr Mahvash in interventional radiology when it looked like nothing left to do for the liver, she wasn't sure of what kind of embolization they would try but he has had some good success with Y-90 spheres for liver cancer and more recently also for other cancers where the liver tumours are secondaries so that's what he wanted to do. Usually they do one procedure but there were so much tumour burden that he split into each lobe separately about 6 weeks apart. The whole goal was to reduce it down and then keep going with immunotherapies to try for that elusive systemic solution. When we carried on with Keytruda, I reckon there was a benefit from having done the radiation but we will know for sure in January when we scan first week. Dr Mahvash definitely saw that we had had some reduction when he took a look before second procedure and in fact, he was pleasantly surprised as he said it usually takes 3 months or so before any shrinkage starts….
I would also say that the chemo/immuno combo they are going to try will be important first so you can hopefully get some improvement in liver function tests before considering trying this if it makes sense,
if you want to chat about it more or about TIL which Juan did in May then message me separately if you like. If I don't respond for a couple of days it will be because I am travelling.
hang in there!
Maria
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- December 18, 2016 at 6:25 pm
Hi Josh,
No, my husband doesn't have ocular melanoma but you are right that Dr Patel does specialise in ocular, however, back in April 2013 when we first went to MDA, she was assigned to us and so we have stayed with her ever since. In July, she sent us to see Dr Mahvash in interventional radiology when it looked like nothing left to do for the liver, she wasn't sure of what kind of embolization they would try but he has had some good success with Y-90 spheres for liver cancer and more recently also for other cancers where the liver tumours are secondaries so that's what he wanted to do. Usually they do one procedure but there were so much tumour burden that he split into each lobe separately about 6 weeks apart. The whole goal was to reduce it down and then keep going with immunotherapies to try for that elusive systemic solution. When we carried on with Keytruda, I reckon there was a benefit from having done the radiation but we will know for sure in January when we scan first week. Dr Mahvash definitely saw that we had had some reduction when he took a look before second procedure and in fact, he was pleasantly surprised as he said it usually takes 3 months or so before any shrinkage starts….
I would also say that the chemo/immuno combo they are going to try will be important first so you can hopefully get some improvement in liver function tests before considering trying this if it makes sense,
if you want to chat about it more or about TIL which Juan did in May then message me separately if you like. If I don't respond for a couple of days it will be because I am travelling.
hang in there!
Maria
-
- December 18, 2016 at 6:25 pm
Hi Josh,
No, my husband doesn't have ocular melanoma but you are right that Dr Patel does specialise in ocular, however, back in April 2013 when we first went to MDA, she was assigned to us and so we have stayed with her ever since. In July, she sent us to see Dr Mahvash in interventional radiology when it looked like nothing left to do for the liver, she wasn't sure of what kind of embolization they would try but he has had some good success with Y-90 spheres for liver cancer and more recently also for other cancers where the liver tumours are secondaries so that's what he wanted to do. Usually they do one procedure but there were so much tumour burden that he split into each lobe separately about 6 weeks apart. The whole goal was to reduce it down and then keep going with immunotherapies to try for that elusive systemic solution. When we carried on with Keytruda, I reckon there was a benefit from having done the radiation but we will know for sure in January when we scan first week. Dr Mahvash definitely saw that we had had some reduction when he took a look before second procedure and in fact, he was pleasantly surprised as he said it usually takes 3 months or so before any shrinkage starts….
I would also say that the chemo/immuno combo they are going to try will be important first so you can hopefully get some improvement in liver function tests before considering trying this if it makes sense,
if you want to chat about it more or about TIL which Juan did in May then message me separately if you like. If I don't respond for a couple of days it will be because I am travelling.
hang in there!
Maria
-
- December 18, 2016 at 1:13 pm
Oddly enough I've been researching this. Can I ask does your husband have ocular melanoma? I know Dr Patel and she specializes in that and I've also seen that these infusions have been given to ocular melanoma patients so I am curious as to whether or not they do this for patients who don't. I really appreciate the message and hope you see my response.
Josh
-
- December 18, 2016 at 1:13 pm
Oddly enough I've been researching this. Can I ask does your husband have ocular melanoma? I know Dr Patel and she specializes in that and I've also seen that these infusions have been given to ocular melanoma patients so I am curious as to whether or not they do this for patients who don't. I really appreciate the message and hope you see my response.
Josh
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- December 18, 2016 at 10:39 am
Josh, when I visited Wolchok last year, he mentioned that they were getting good results with chemo following immunotherapy. Sounds like they are now combining, which is good. Hopefully this will beat back the melanoma and give you a restart for TIL or something else. Don't focus on other patient's circumstances, particularly those that have unfortunately not survived. Everyone is different. I've had liver tumors since diagnosis. They don't even measure them all–only the top three. I've also had brain tumors, optic nerve tumors, etc. Everyone is different.
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- December 18, 2016 at 10:39 am
Josh, when I visited Wolchok last year, he mentioned that they were getting good results with chemo following immunotherapy. Sounds like they are now combining, which is good. Hopefully this will beat back the melanoma and give you a restart for TIL or something else. Don't focus on other patient's circumstances, particularly those that have unfortunately not survived. Everyone is different. I've had liver tumors since diagnosis. They don't even measure them all–only the top three. I've also had brain tumors, optic nerve tumors, etc. Everyone is different.
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- December 18, 2016 at 10:39 am
Josh, when I visited Wolchok last year, he mentioned that they were getting good results with chemo following immunotherapy. Sounds like they are now combining, which is good. Hopefully this will beat back the melanoma and give you a restart for TIL or something else. Don't focus on other patient's circumstances, particularly those that have unfortunately not survived. Everyone is different. I've had liver tumors since diagnosis. They don't even measure them all–only the top three. I've also had brain tumors, optic nerve tumors, etc. Everyone is different.
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- December 18, 2016 at 1:56 pm
Josh, I don’t have much to offer except to say that you are in my prayers. I have been thinking about you and your family ever since you posted this. I am praying that the next therapy will get rid of the Beast and let you live your life the way you should be able to, enjoying your wife and children without these worries.Annie
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- December 18, 2016 at 1:56 pm
Josh, I don’t have much to offer except to say that you are in my prayers. I have been thinking about you and your family ever since you posted this. I am praying that the next therapy will get rid of the Beast and let you live your life the way you should be able to, enjoying your wife and children without these worries.Annie
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- December 18, 2016 at 1:56 pm
Josh, I don’t have much to offer except to say that you are in my prayers. I have been thinking about you and your family ever since you posted this. I am praying that the next therapy will get rid of the Beast and let you live your life the way you should be able to, enjoying your wife and children without these worries.Annie
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- December 18, 2016 at 5:49 pm
OMG JOSH.,
Not was i was hoping to read……i am so sorry to see your latest news. I am not even sure what to say. Obviously hoping Keyrtruda and Abraxane does what it needs to do.
Glad you finally made it home.
Hoping for some better news soon for you.
xxoo
jenny
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- December 18, 2016 at 5:49 pm
OMG JOSH.,
Not was i was hoping to read……i am so sorry to see your latest news. I am not even sure what to say. Obviously hoping Keyrtruda and Abraxane does what it needs to do.
Glad you finally made it home.
Hoping for some better news soon for you.
xxoo
jenny
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- December 18, 2016 at 5:49 pm
OMG JOSH.,
Not was i was hoping to read……i am so sorry to see your latest news. I am not even sure what to say. Obviously hoping Keyrtruda and Abraxane does what it needs to do.
Glad you finally made it home.
Hoping for some better news soon for you.
xxoo
jenny
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- December 19, 2016 at 7:08 pm
Josh,
My father was at UCLA and after progression on IPI/Nivo and then Nivo alone, the doctors put him on Nivo and Temodar as progression was aggressive (chose Temodar as he had multiple brain mets and hope was Temodar would help with them). His response to this chemo/immunotherapy treatment was robust and rapid. While he unfortunately ran into some other issues that slowed his progress, the scan results after second does of chemo (i.e. after two months) showed most tumors drastically reduced in size and some altogether resolved.
Our experience bodes well for similar success with chemo/immunotherapy treatments, particulalrly in someone younger and healthier with an immense drive and will to get better, like yourself.
Stay strong my friend, and good luck.
Cameron
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- December 19, 2016 at 7:08 pm
Josh,
My father was at UCLA and after progression on IPI/Nivo and then Nivo alone, the doctors put him on Nivo and Temodar as progression was aggressive (chose Temodar as he had multiple brain mets and hope was Temodar would help with them). His response to this chemo/immunotherapy treatment was robust and rapid. While he unfortunately ran into some other issues that slowed his progress, the scan results after second does of chemo (i.e. after two months) showed most tumors drastically reduced in size and some altogether resolved.
Our experience bodes well for similar success with chemo/immunotherapy treatments, particulalrly in someone younger and healthier with an immense drive and will to get better, like yourself.
Stay strong my friend, and good luck.
Cameron
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- December 19, 2016 at 7:08 pm
Josh,
My father was at UCLA and after progression on IPI/Nivo and then Nivo alone, the doctors put him on Nivo and Temodar as progression was aggressive (chose Temodar as he had multiple brain mets and hope was Temodar would help with them). His response to this chemo/immunotherapy treatment was robust and rapid. While he unfortunately ran into some other issues that slowed his progress, the scan results after second does of chemo (i.e. after two months) showed most tumors drastically reduced in size and some altogether resolved.
Our experience bodes well for similar success with chemo/immunotherapy treatments, particulalrly in someone younger and healthier with an immense drive and will to get better, like yourself.
Stay strong my friend, and good luck.
Cameron
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