› Forums › General Melanoma Community › Jake’s scans and Artie
- This topic has 33 replies, 9 voices, and was last updated 9 years, 5 months ago by
jamieth29.
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- December 11, 2015 at 6:33 am
Scans were not good. And dec 5 Artie wrote to me here. Now he is gone. Not my best day. I hate "cancery" days. I feel faced again with the reality Jake may not have the time I want….6 months of Keytruda. 2 new tumors. Throat and rectum!!! He is 18! For 6 months he has had 20 in his liver, 20 in his lungs, many in his spine, all over his bones…now this. He takes it great. Feels fine. Looks good.
I go to bed devastated. Not Artie. At least he is free of this beast. I will wake up okay. I can't waste the good days crying about the bad ones.
I loved you Artie. You were the first to help me. You were smart, kind, and empowered me in a fight I didn't want with melanoma! I will keep you in my heart! Please watch over Jake.
Kerri
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- December 11, 2015 at 2:28 pm
I'm so sorry Kerri. My heart goes out to you. You are right there with Artie in my book in regards to class and courage and you know that's about as high a compliment as one can give. I'll be adding you and Jake to my prayer list. Hang in there and please let us know if there is anything we can do.
Brian
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- December 11, 2015 at 2:28 pm
I'm so sorry Kerri. My heart goes out to you. You are right there with Artie in my book in regards to class and courage and you know that's about as high a compliment as one can give. I'll be adding you and Jake to my prayer list. Hang in there and please let us know if there is anything we can do.
Brian
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- December 11, 2015 at 2:28 pm
I'm so sorry Kerri. My heart goes out to you. You are right there with Artie in my book in regards to class and courage and you know that's about as high a compliment as one can give. I'll be adding you and Jake to my prayer list. Hang in there and please let us know if there is anything we can do.
Brian
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- December 11, 2015 at 5:10 pm
Kerri,
Can't even imagine what you are going through as it is your child that is battling this disease. Losing Artie made it hit home for us, so sorry. You are such a wonderful caregiver and you are faced with the unimaginable and Jake is obviously the epitome of grace. Many hugs
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- December 11, 2015 at 5:10 pm
Kerri,
Can't even imagine what you are going through as it is your child that is battling this disease. Losing Artie made it hit home for us, so sorry. You are such a wonderful caregiver and you are faced with the unimaginable and Jake is obviously the epitome of grace. Many hugs
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- December 11, 2015 at 5:10 pm
Kerri,
Can't even imagine what you are going through as it is your child that is battling this disease. Losing Artie made it hit home for us, so sorry. You are such a wonderful caregiver and you are faced with the unimaginable and Jake is obviously the epitome of grace. Many hugs
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- December 11, 2015 at 6:33 pm
Kerri, I'm sorry to hear. I know that you didn't ask for advice, but I'll offer some anyway:
1. I don't recall your son's BRAF status, but BRAF-MEK is obviously something to consider.
2. I've seen posts with folks suggesting that they are moving from Keytruda to ipi/Nivo. I don't know if they are BRAF-wild. If they aren't, then this suggests that some insurers will cover ipi/Nivo even if you aren't BRAF-wild.
3. Consider traveling to the NIH or MD Anderson to explore TIL. MDA is closer to you, but NIH will cover the full cost of TIL. (Note that it takes time to do TIL (not to mention getting an appointment), so best to start the process early.)
4. Consider traveling to MD Anderson (Davies among others) and/or Sloan (Wolchok). Generally speaking, these institutions have more trials available than other institutions. (Due to their size, etc., they can also be difficult to navigate.)
5. Call Catherine Poole who runs the Melanoma International Foundation site. She speaks with a lot of people and is sometimes aware of trial options that aren't mentioned here or on the MIF site.
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- December 11, 2015 at 6:33 pm
Kerri, I'm sorry to hear. I know that you didn't ask for advice, but I'll offer some anyway:
1. I don't recall your son's BRAF status, but BRAF-MEK is obviously something to consider.
2. I've seen posts with folks suggesting that they are moving from Keytruda to ipi/Nivo. I don't know if they are BRAF-wild. If they aren't, then this suggests that some insurers will cover ipi/Nivo even if you aren't BRAF-wild.
3. Consider traveling to the NIH or MD Anderson to explore TIL. MDA is closer to you, but NIH will cover the full cost of TIL. (Note that it takes time to do TIL (not to mention getting an appointment), so best to start the process early.)
4. Consider traveling to MD Anderson (Davies among others) and/or Sloan (Wolchok). Generally speaking, these institutions have more trials available than other institutions. (Due to their size, etc., they can also be difficult to navigate.)
5. Call Catherine Poole who runs the Melanoma International Foundation site. She speaks with a lot of people and is sometimes aware of trial options that aren't mentioned here or on the MIF site.
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- December 11, 2015 at 6:33 pm
Kerri, I'm sorry to hear. I know that you didn't ask for advice, but I'll offer some anyway:
1. I don't recall your son's BRAF status, but BRAF-MEK is obviously something to consider.
2. I've seen posts with folks suggesting that they are moving from Keytruda to ipi/Nivo. I don't know if they are BRAF-wild. If they aren't, then this suggests that some insurers will cover ipi/Nivo even if you aren't BRAF-wild.
3. Consider traveling to the NIH or MD Anderson to explore TIL. MDA is closer to you, but NIH will cover the full cost of TIL. (Note that it takes time to do TIL (not to mention getting an appointment), so best to start the process early.)
4. Consider traveling to MD Anderson (Davies among others) and/or Sloan (Wolchok). Generally speaking, these institutions have more trials available than other institutions. (Due to their size, etc., they can also be difficult to navigate.)
5. Call Catherine Poole who runs the Melanoma International Foundation site. She speaks with a lot of people and is sometimes aware of trial options that aren't mentioned here or on the MIF site.
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- December 11, 2015 at 7:53 pm
Kerri,
I am so deeply sorry you are dealing with this disease with your son. I can't imagine your pain. It's hurtful enough with my husband who is in his fifties, but to be so young seems so unfair. I think the options for treatment are excellent suggestions. Also, look into Sloan Kettering because they are doing many different mutation screening, but it might take about three weeks to find out the information. My prayers are with you and your son.
Maureen
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- December 11, 2015 at 7:53 pm
Kerri,
I am so deeply sorry you are dealing with this disease with your son. I can't imagine your pain. It's hurtful enough with my husband who is in his fifties, but to be so young seems so unfair. I think the options for treatment are excellent suggestions. Also, look into Sloan Kettering because they are doing many different mutation screening, but it might take about three weeks to find out the information. My prayers are with you and your son.
Maureen
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- December 11, 2015 at 7:53 pm
Kerri,
I am so deeply sorry you are dealing with this disease with your son. I can't imagine your pain. It's hurtful enough with my husband who is in his fifties, but to be so young seems so unfair. I think the options for treatment are excellent suggestions. Also, look into Sloan Kettering because they are doing many different mutation screening, but it might take about three weeks to find out the information. My prayers are with you and your son.
Maureen
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- December 12, 2015 at 1:24 am
To all my friends,
First, thank you. I feel sad that I let myself write in a very emotional moment. Of course, you all being the wise, strong, empathetic and caring people you are did what you do! You reach out. You offer not just support but important council. I am on my feet. Here is where we are medically….
July I spent many hours a day on the phone w dif doctors and here. I talked several times to the head TIL dr at NIH. They sent me the kit to get started. Jake refused. He has done biochemo. He is not willing(now) to do anything with chemo. Since diagnosis 15 mo ago we have had the most amazing case worker for our insurance. She calls me often to check On Jake. She says she will put thru anything we want and wants to save this kid! She was an oncology nurse for 15 years. Jake was the first patient at our hospital to get keytruda without doing ipi etc first. We are at a good hospital. Huntsman cancer institute. Our dr was mentored by the head dr at NIH. We get good trials and the latest in treatments. K. So–while I was doing all my calls this summer I had jakes entire DNA run! My insurance covered it. I have ALL of his mutations. He is BRAF mutated. He is apparently eligible for a trial now to inject a virus in a neck tumor while staying on keytruda. Jake thinks he is okay. He thinks he will be cancer free in a few months. I have asked him to leave with me for treatment. We had $20k from a fundraiser. Now it's gone on his expenses over the last year. We have some means or could come up w them. Friends, are we at a crossroads again?!? The keytruda shrunk about 1/3 of his tumors the first 3 mo. This last 3 mo it stated stable(says the dr, I will read the report when it's mailed) with new growth in his neck and rectum(very sad to hear). How long can he stay healthy w 20 tumors in his liver? Tumors in his spine now for 5 months. He seriously looks totally good finally. No pain except where we did radiation on his spine–which worked perfectly!! It did leave a little tissue damage which is sore.
He also has new vitiligo. What to do….our dr said to keep moving on w keytruda. Watch the tumors and watch for anything new. Scan in 3 mo. Consider the virus trial and maybe radiation on his other spine tumors. Oh–and now we have to change insurance because his wont pay the same!! They basically kicked him off. I am very nervous about this!! They may say no to things now. Never before!!
sorry for the novel!! I am feeling strong again. I pray for all of you and some by name. I miss Artie. And I feel so grateful to have this place.
Kerri
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- December 12, 2015 at 1:24 am
To all my friends,
First, thank you. I feel sad that I let myself write in a very emotional moment. Of course, you all being the wise, strong, empathetic and caring people you are did what you do! You reach out. You offer not just support but important council. I am on my feet. Here is where we are medically….
July I spent many hours a day on the phone w dif doctors and here. I talked several times to the head TIL dr at NIH. They sent me the kit to get started. Jake refused. He has done biochemo. He is not willing(now) to do anything with chemo. Since diagnosis 15 mo ago we have had the most amazing case worker for our insurance. She calls me often to check On Jake. She says she will put thru anything we want and wants to save this kid! She was an oncology nurse for 15 years. Jake was the first patient at our hospital to get keytruda without doing ipi etc first. We are at a good hospital. Huntsman cancer institute. Our dr was mentored by the head dr at NIH. We get good trials and the latest in treatments. K. So–while I was doing all my calls this summer I had jakes entire DNA run! My insurance covered it. I have ALL of his mutations. He is BRAF mutated. He is apparently eligible for a trial now to inject a virus in a neck tumor while staying on keytruda. Jake thinks he is okay. He thinks he will be cancer free in a few months. I have asked him to leave with me for treatment. We had $20k from a fundraiser. Now it's gone on his expenses over the last year. We have some means or could come up w them. Friends, are we at a crossroads again?!? The keytruda shrunk about 1/3 of his tumors the first 3 mo. This last 3 mo it stated stable(says the dr, I will read the report when it's mailed) with new growth in his neck and rectum(very sad to hear). How long can he stay healthy w 20 tumors in his liver? Tumors in his spine now for 5 months. He seriously looks totally good finally. No pain except where we did radiation on his spine–which worked perfectly!! It did leave a little tissue damage which is sore.
He also has new vitiligo. What to do….our dr said to keep moving on w keytruda. Watch the tumors and watch for anything new. Scan in 3 mo. Consider the virus trial and maybe radiation on his other spine tumors. Oh–and now we have to change insurance because his wont pay the same!! They basically kicked him off. I am very nervous about this!! They may say no to things now. Never before!!
sorry for the novel!! I am feeling strong again. I pray for all of you and some by name. I miss Artie. And I feel so grateful to have this place.
Kerri
-
- December 12, 2015 at 1:24 am
To all my friends,
First, thank you. I feel sad that I let myself write in a very emotional moment. Of course, you all being the wise, strong, empathetic and caring people you are did what you do! You reach out. You offer not just support but important council. I am on my feet. Here is where we are medically….
July I spent many hours a day on the phone w dif doctors and here. I talked several times to the head TIL dr at NIH. They sent me the kit to get started. Jake refused. He has done biochemo. He is not willing(now) to do anything with chemo. Since diagnosis 15 mo ago we have had the most amazing case worker for our insurance. She calls me often to check On Jake. She says she will put thru anything we want and wants to save this kid! She was an oncology nurse for 15 years. Jake was the first patient at our hospital to get keytruda without doing ipi etc first. We are at a good hospital. Huntsman cancer institute. Our dr was mentored by the head dr at NIH. We get good trials and the latest in treatments. K. So–while I was doing all my calls this summer I had jakes entire DNA run! My insurance covered it. I have ALL of his mutations. He is BRAF mutated. He is apparently eligible for a trial now to inject a virus in a neck tumor while staying on keytruda. Jake thinks he is okay. He thinks he will be cancer free in a few months. I have asked him to leave with me for treatment. We had $20k from a fundraiser. Now it's gone on his expenses over the last year. We have some means or could come up w them. Friends, are we at a crossroads again?!? The keytruda shrunk about 1/3 of his tumors the first 3 mo. This last 3 mo it stated stable(says the dr, I will read the report when it's mailed) with new growth in his neck and rectum(very sad to hear). How long can he stay healthy w 20 tumors in his liver? Tumors in his spine now for 5 months. He seriously looks totally good finally. No pain except where we did radiation on his spine–which worked perfectly!! It did leave a little tissue damage which is sore.
He also has new vitiligo. What to do….our dr said to keep moving on w keytruda. Watch the tumors and watch for anything new. Scan in 3 mo. Consider the virus trial and maybe radiation on his other spine tumors. Oh–and now we have to change insurance because his wont pay the same!! They basically kicked him off. I am very nervous about this!! They may say no to things now. Never before!!
sorry for the novel!! I am feeling strong again. I pray for all of you and some by name. I miss Artie. And I feel so grateful to have this place.
Kerri
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- December 12, 2015 at 2:28 am
Kerri,
What is the virus trial t-vec? Have the doctors talked about braf drugs? Are you looking at trials elsewhere or just huntsman? I do know there is some trials running with keytruda and braf inhibitors. Also i think some people are going to ipi/nivo combo after not responding to keytruda. I believe i have read that the ipi ctla-4 may drive t-cells into the tumor then keytruda may be able to better see the tumor cells. I believe when you don’t respond to keytruda or nivo its because there is no t-cells in tumor microenvironment and they just aren’t recognizing the tumors. I am sorry Jake has to go through this but the kid sounds like he is very tough mentally and physically. He has his mind made up that he is not losing. Its incredible the courage that people have. Hoping for the best!
Jamie -
- December 12, 2015 at 2:28 am
Kerri,
What is the virus trial t-vec? Have the doctors talked about braf drugs? Are you looking at trials elsewhere or just huntsman? I do know there is some trials running with keytruda and braf inhibitors. Also i think some people are going to ipi/nivo combo after not responding to keytruda. I believe i have read that the ipi ctla-4 may drive t-cells into the tumor then keytruda may be able to better see the tumor cells. I believe when you don’t respond to keytruda or nivo its because there is no t-cells in tumor microenvironment and they just aren’t recognizing the tumors. I am sorry Jake has to go through this but the kid sounds like he is very tough mentally and physically. He has his mind made up that he is not losing. Its incredible the courage that people have. Hoping for the best!
Jamie -
- December 12, 2015 at 2:28 am
Kerri,
What is the virus trial t-vec? Have the doctors talked about braf drugs? Are you looking at trials elsewhere or just huntsman? I do know there is some trials running with keytruda and braf inhibitors. Also i think some people are going to ipi/nivo combo after not responding to keytruda. I believe i have read that the ipi ctla-4 may drive t-cells into the tumor then keytruda may be able to better see the tumor cells. I believe when you don’t respond to keytruda or nivo its because there is no t-cells in tumor microenvironment and they just aren’t recognizing the tumors. I am sorry Jake has to go through this but the kid sounds like he is very tough mentally and physically. He has his mind made up that he is not losing. Its incredible the courage that people have. Hoping for the best!
Jamie
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