› Forums › General Melanoma Community › Here we go
- This topic has 57 replies, 19 voices, and was last updated 7 years, 7 months ago by itsme.mimi.
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- September 14, 2016 at 3:35 pm
At airport waiting for flight to Houston, which of course is delayed. The blood test showed liver enzymes dropped significantly. That was great news…thank God. Bad news is I went in patient portal and read radiologist report from scan last week. Overall impression with out getting into details was "worsening metastatic disease". That hurt because with the 3rd and last ipi dose being 8/8, I have to assume I didn't respond 2nd time around after having great response in 2013/2014. I feel like though we tried hard in past couple months…nothing has stopped this dreaded crap and therefore nothing got done.
So I do Ct scan tonight at MDA, see Doc Friday, Brain MRI Sunday and then get moving into treatment phase next week.
Not that anyone has crystal ball but what are chances something shows up in brain a month after gamma knife? I've bothered Kyle with private messages for the past week with this stuff…symptoms to look for etc…Either way they will need to ask for PI override. I need the cells and see if I can start beating this back. I know others have been in far worse places but it feels like I'm trending there. Believe me I want to fight but I need the treatment to fight with me. Yes I'm starting to feel desperate. Anxious to get to Houston and get show on road. Not sure if I'll be posting, I'm tired of all the sadness and suffering I read here but know that I think of and pray daily for all of you. Much love, support and healing to my MPIP Family!
Be well!!
Josh
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- September 14, 2016 at 3:48 pm
Yea Josh! It's happening! I'm so glad to hear that your liver enzymes have gone down, but like you, not so happy to hear "worsening metastic disease". That sucks!
Praying that this trial completely evicts Mel from everwhere it has taken up residence!
Belessings,
Julie
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- September 14, 2016 at 3:48 pm
Yea Josh! It's happening! I'm so glad to hear that your liver enzymes have gone down, but like you, not so happy to hear "worsening metastic disease". That sucks!
Praying that this trial completely evicts Mel from everwhere it has taken up residence!
Belessings,
Julie
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- September 14, 2016 at 3:48 pm
Yea Josh! It's happening! I'm so glad to hear that your liver enzymes have gone down, but like you, not so happy to hear "worsening metastic disease". That sucks!
Praying that this trial completely evicts Mel from everwhere it has taken up residence!
Belessings,
Julie
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- September 14, 2016 at 4:54 pm
Josh,
I wish you all the best at MDA. I know this is discouraging, but please keep up the fight, my friend. And even if you don't feel like sharing all the details, please give us an "I'm still here and kickin'" post every few days, okay? We worry when we don't hear from you.
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- September 14, 2016 at 4:54 pm
Josh,
I wish you all the best at MDA. I know this is discouraging, but please keep up the fight, my friend. And even if you don't feel like sharing all the details, please give us an "I'm still here and kickin'" post every few days, okay? We worry when we don't hear from you.
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- September 14, 2016 at 4:54 pm
Josh,
I wish you all the best at MDA. I know this is discouraging, but please keep up the fight, my friend. And even if you don't feel like sharing all the details, please give us an "I'm still here and kickin'" post every few days, okay? We worry when we don't hear from you.
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- September 14, 2016 at 5:19 pm
Hi Josh,
Glad liiver lab results improved. Hope your journey is better than expected and that all goes smoothly at the hospital. Was glad you posted and said how you were getting on…had Been wondering about you. I ended up with a surgery on Mon.. But it was not for melanoma and was less extensive than feared but still waiting for lab results before any chance of discharge.
Wishing you well
Deb
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- September 14, 2016 at 5:19 pm
Hi Josh,
Glad liiver lab results improved. Hope your journey is better than expected and that all goes smoothly at the hospital. Was glad you posted and said how you were getting on…had Been wondering about you. I ended up with a surgery on Mon.. But it was not for melanoma and was less extensive than feared but still waiting for lab results before any chance of discharge.
Wishing you well
Deb
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- September 14, 2016 at 5:19 pm
Hi Josh,
Glad liiver lab results improved. Hope your journey is better than expected and that all goes smoothly at the hospital. Was glad you posted and said how you were getting on…had Been wondering about you. I ended up with a surgery on Mon.. But it was not for melanoma and was less extensive than feared but still waiting for lab results before any chance of discharge.
Wishing you well
Deb
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- September 14, 2016 at 8:19 pm
We're with you, Josh! Best wishes and hope all goes smoothly.
Holding you in my heart,
Gwen
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- September 14, 2016 at 8:19 pm
We're with you, Josh! Best wishes and hope all goes smoothly.
Holding you in my heart,
Gwen
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- September 14, 2016 at 8:19 pm
We're with you, Josh! Best wishes and hope all goes smoothly.
Holding you in my heart,
Gwen
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- September 14, 2016 at 8:24 pm
So glad the liver numbers came down Josh! Also glad you are able to head to MDA. I can confirm that the weather is still hot and humid here and unfortunately (or fortunately) you just missed the Texans vs. Bears game this past Sunday (I see you are a Bears fan) and the Astros played the Cubs as well.
All kidding aside, please let us know if you need anything at all! My husband can actually walk to MDA from his work at Baylor and I work only 10 minutes away. I was just over there last month for lunch in the Rotary house. It's a great place to hang out for patients and family.
If you need books, food, transportation, MLB updates, anything, we'll gladly bring it over or if you just need a support group or a quick lunch with friends.
As most of us know, the world only gets smaller as we age. My daugther had to see an Endriconologist last month and for some reason I brought up John's Melanoma. It turns out she is Dr. Hwu's sister! I told her I've read all his research papers! He does a lot with ACT/TIL over at MDA, not sure if he is part of your team as well.
As celeste says, all fingers and toes crossed on this one. Don't hesitate to reach out. Many prayers.
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- September 14, 2016 at 8:24 pm
So glad the liver numbers came down Josh! Also glad you are able to head to MDA. I can confirm that the weather is still hot and humid here and unfortunately (or fortunately) you just missed the Texans vs. Bears game this past Sunday (I see you are a Bears fan) and the Astros played the Cubs as well.
All kidding aside, please let us know if you need anything at all! My husband can actually walk to MDA from his work at Baylor and I work only 10 minutes away. I was just over there last month for lunch in the Rotary house. It's a great place to hang out for patients and family.
If you need books, food, transportation, MLB updates, anything, we'll gladly bring it over or if you just need a support group or a quick lunch with friends.
As most of us know, the world only gets smaller as we age. My daugther had to see an Endriconologist last month and for some reason I brought up John's Melanoma. It turns out she is Dr. Hwu's sister! I told her I've read all his research papers! He does a lot with ACT/TIL over at MDA, not sure if he is part of your team as well.
As celeste says, all fingers and toes crossed on this one. Don't hesitate to reach out. Many prayers.
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- September 14, 2016 at 8:24 pm
So glad the liver numbers came down Josh! Also glad you are able to head to MDA. I can confirm that the weather is still hot and humid here and unfortunately (or fortunately) you just missed the Texans vs. Bears game this past Sunday (I see you are a Bears fan) and the Astros played the Cubs as well.
All kidding aside, please let us know if you need anything at all! My husband can actually walk to MDA from his work at Baylor and I work only 10 minutes away. I was just over there last month for lunch in the Rotary house. It's a great place to hang out for patients and family.
If you need books, food, transportation, MLB updates, anything, we'll gladly bring it over or if you just need a support group or a quick lunch with friends.
As most of us know, the world only gets smaller as we age. My daugther had to see an Endriconologist last month and for some reason I brought up John's Melanoma. It turns out she is Dr. Hwu's sister! I told her I've read all his research papers! He does a lot with ACT/TIL over at MDA, not sure if he is part of your team as well.
As celeste says, all fingers and toes crossed on this one. Don't hesitate to reach out. Many prayers.
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- September 15, 2016 at 8:49 pm
Thanks for even taking the time to wish us all well with all you are going through! Another day another treatment and here's hoping this one has a lasting effect. Don't worry about the ipi not working…. For most of us it never worked. Please don't lose heart. All the very best
anne-Louise
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- September 15, 2016 at 8:49 pm
Thanks for even taking the time to wish us all well with all you are going through! Another day another treatment and here's hoping this one has a lasting effect. Don't worry about the ipi not working…. For most of us it never worked. Please don't lose heart. All the very best
anne-Louise
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- September 15, 2016 at 8:49 pm
Thanks for even taking the time to wish us all well with all you are going through! Another day another treatment and here's hoping this one has a lasting effect. Don't worry about the ipi not working…. For most of us it never worked. Please don't lose heart. All the very best
anne-Louise
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- September 22, 2016 at 1:57 am
Praying for you to receive some good news, very soon.
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- September 22, 2016 at 1:57 am
Praying for you to receive some good news, very soon.
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- September 22, 2016 at 1:57 am
Praying for you to receive some good news, very soon.
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