› Forums › General Melanoma Community › Jake’s MRI yesterday
- This topic has 15 replies, 5 voices, and was last updated 7 years, 4 months ago by
Momofjake.
- Post
-
- November 23, 2016 at 1:15 pm
Hi All,
Its been a nice break:) Jake went to Iceland and loved the peaceful trip. Life has been okay, but at 19 you are tired of waking up to only think cancer. It's been 2 years now. Crazy!!
I knew Jake wasn't adding the MEK and only taking the TAF sometimes. Well, he has been icing his neck. He finally asked Sunday night for a scan. I pushed. Had an MRI Tuesday. New spine tumors. Who knows how big, how many, and what else is growing. The PA in accute care didn't want to scan and offered him muscle relaxers. He insisted. He stayed 7 hrs to get it. Then her call was ridiculous. No good info and she said to take Tylenol and all was fine. K. What the what?? We know that after MEK/TAF things can move quickly. Jake has said no to ipi and they offer nothing else. They will send the MRI results to his regular doc and I will call them tomorrow.
He did open up yesterday–a first in a long time. We were just tired and watched some Office with his brother. He fell asleep early. He is starting to have some pain. This is one incredible, smart, handsome kid who just got robbed. He said he knows there is a God, he just isn't sure why he has left him out to dry for awhile. He said he has gotten the opposite of everything he has prayed for but he still prays many times a day. I don't feel like praying much today. I just feel sad and I feel like I can do whatever Jake wants. Josh, don't give up. Please.
Jake isn't fond of the whole system and wants to fly to Germany next week to seek an alternative treatment. He injects some now and I don't fight him. It's his body. He gets to choose. I will prob drop some $$ and take him where he wants. I will update when there is something to report. For now…Melanoma is a tricky road!
Kerri–momofjake
- Replies
-
-
- November 23, 2016 at 4:40 pm
Dear Kerri,
how about if he tried keytruda + something added to it… You said it worked beautifully at the begining as a solo agent, perhaps it might work again in combo?
I would maybe hold the alternative treatments as long as you have other options?
I will join your son in praying for him, he is such a brave and a beautiful boy…
Love,
Patrisa
-
- November 23, 2016 at 4:40 pm
Dear Kerri,
how about if he tried keytruda + something added to it… You said it worked beautifully at the begining as a solo agent, perhaps it might work again in combo?
I would maybe hold the alternative treatments as long as you have other options?
I will join your son in praying for him, he is such a brave and a beautiful boy…
Love,
Patrisa
-
- November 23, 2016 at 4:40 pm
Dear Kerri,
how about if he tried keytruda + something added to it… You said it worked beautifully at the begining as a solo agent, perhaps it might work again in combo?
I would maybe hold the alternative treatments as long as you have other options?
I will join your son in praying for him, he is such a brave and a beautiful boy…
Love,
Patrisa
-
- November 23, 2016 at 4:41 pm
Kerri:
I don't get on this board as often as I would like, and have not followed Jake's story. I did read the profile you completed.
I am curious why they are only offering ipi. Has he already had an anti-PD1 drug (Keytruda or Opdivo)?
Also, when melanoma metastasizes into the spine it is called lepto-meningeal disease (LMD). When you say he has mets in the spine do you know if they are in the bone or if they are in the cerebrospinal fluid in the spinal column? This does make a difference.
Treating LMD is challenging, perhaps because the drugs given systemically are not actually getting into the spinal fluid where the tumors are. Some studies are being done and/or are being planned in which melanoma treatments are given by intrathecal infusion. In other words, they are putting regular melanoma drugs directly into the spinal fluid.
A year ago the MRF hosted a summit meeting on brain metastases and LMD, and some good findings came out of that. If Jake's melanoma is now in the cerebrospinal fluid I would be happy to follow up with one of the chairs of that meeting to see about any new treatment approaches.
Feel free to drop me a note if you are interested, or give me a call:
Tim–MRF
(202) 742-5955
-
- November 23, 2016 at 9:16 pm
Hi,
I am so sorry for Jake. Hope he will get better. Maybe you can give me some advice. I am from Europe but have lived in Australia, California and Florida. Both of my kids are fair skin. Especially my 13 year old son has had white hair and blue eyes. We spent big part of his life in Florida. I was just diagnosed with Melanoma in situ. My son has huge moles – more than 1 cm like 5 of them on his head. I have taken him before to pediatric dermatologist before and the doc never said anything. Also he had a large mole in his belly bottom. I am taking him back next week. What should I do? Should we have all the big moles removed? Now with my history I am really worried.
-
- November 23, 2016 at 9:16 pm
Hi,
I am so sorry for Jake. Hope he will get better. Maybe you can give me some advice. I am from Europe but have lived in Australia, California and Florida. Both of my kids are fair skin. Especially my 13 year old son has had white hair and blue eyes. We spent big part of his life in Florida. I was just diagnosed with Melanoma in situ. My son has huge moles – more than 1 cm like 5 of them on his head. I have taken him before to pediatric dermatologist before and the doc never said anything. Also he had a large mole in his belly bottom. I am taking him back next week. What should I do? Should we have all the big moles removed? Now with my history I am really worried.
-
- November 23, 2016 at 9:16 pm
Hi,
I am so sorry for Jake. Hope he will get better. Maybe you can give me some advice. I am from Europe but have lived in Australia, California and Florida. Both of my kids are fair skin. Especially my 13 year old son has had white hair and blue eyes. We spent big part of his life in Florida. I was just diagnosed with Melanoma in situ. My son has huge moles – more than 1 cm like 5 of them on his head. I have taken him before to pediatric dermatologist before and the doc never said anything. Also he had a large mole in his belly bottom. I am taking him back next week. What should I do? Should we have all the big moles removed? Now with my history I am really worried.
-
- November 23, 2016 at 4:41 pm
Kerri:
I don't get on this board as often as I would like, and have not followed Jake's story. I did read the profile you completed.
I am curious why they are only offering ipi. Has he already had an anti-PD1 drug (Keytruda or Opdivo)?
Also, when melanoma metastasizes into the spine it is called lepto-meningeal disease (LMD). When you say he has mets in the spine do you know if they are in the bone or if they are in the cerebrospinal fluid in the spinal column? This does make a difference.
Treating LMD is challenging, perhaps because the drugs given systemically are not actually getting into the spinal fluid where the tumors are. Some studies are being done and/or are being planned in which melanoma treatments are given by intrathecal infusion. In other words, they are putting regular melanoma drugs directly into the spinal fluid.
A year ago the MRF hosted a summit meeting on brain metastases and LMD, and some good findings came out of that. If Jake's melanoma is now in the cerebrospinal fluid I would be happy to follow up with one of the chairs of that meeting to see about any new treatment approaches.
Feel free to drop me a note if you are interested, or give me a call:
Tim–MRF
(202) 742-5955
-
- November 23, 2016 at 4:41 pm
Kerri:
I don't get on this board as often as I would like, and have not followed Jake's story. I did read the profile you completed.
I am curious why they are only offering ipi. Has he already had an anti-PD1 drug (Keytruda or Opdivo)?
Also, when melanoma metastasizes into the spine it is called lepto-meningeal disease (LMD). When you say he has mets in the spine do you know if they are in the bone or if they are in the cerebrospinal fluid in the spinal column? This does make a difference.
Treating LMD is challenging, perhaps because the drugs given systemically are not actually getting into the spinal fluid where the tumors are. Some studies are being done and/or are being planned in which melanoma treatments are given by intrathecal infusion. In other words, they are putting regular melanoma drugs directly into the spinal fluid.
A year ago the MRF hosted a summit meeting on brain metastases and LMD, and some good findings came out of that. If Jake's melanoma is now in the cerebrospinal fluid I would be happy to follow up with one of the chairs of that meeting to see about any new treatment approaches.
Feel free to drop me a note if you are interested, or give me a call:
Tim–MRF
(202) 742-5955
-
- November 30, 2016 at 3:04 am
Hi Kerri,
So tough what you are going through. I feel for you. I don't know the answers and I wish I did. Maybe Jake is following his gut. I know when I hit stage 4 I looked at that as if it were up to me to save my life. I personally didn't plan on signing up for all the treatments that were going to tear down my immune system. I too had looked into a few places outside the US as options for more alternative therapies. But I was offered Keytruda as an immunotherapy, which was an immune booster….so….I stopped packing my bags and I wanted to try the Keytruda that was offered to me.
But that didn't mean I stopped there. I still believed that I needed to give my body as much living enzymes and health as I possibly could to help the Kertruda go to work. I believe in both Eastern and Western medicine and feel they can help each other. So I changed everything. Went 80% raw organic fruits and veggies, changed the cleaning products I used in my house to more natural, went for all natural products for my hair and skin, and I went to a holistic doctor to get his take….and I've used and stuck with most everything he told me. My thought was that I obviously am more susceptible to illness and what can I do to better my chances in the fight of my life.
I only know that I did what I felt in my gut were the things I wanted to do. I so wish I had the correct cocktail for Jake. I wish I had the correct cocktail for you all suffering. I can only offer you hope and my own story.
A big hug and all the best, Laurie
-
- November 30, 2016 at 3:04 am
Hi Kerri,
So tough what you are going through. I feel for you. I don't know the answers and I wish I did. Maybe Jake is following his gut. I know when I hit stage 4 I looked at that as if it were up to me to save my life. I personally didn't plan on signing up for all the treatments that were going to tear down my immune system. I too had looked into a few places outside the US as options for more alternative therapies. But I was offered Keytruda as an immunotherapy, which was an immune booster….so….I stopped packing my bags and I wanted to try the Keytruda that was offered to me.
But that didn't mean I stopped there. I still believed that I needed to give my body as much living enzymes and health as I possibly could to help the Kertruda go to work. I believe in both Eastern and Western medicine and feel they can help each other. So I changed everything. Went 80% raw organic fruits and veggies, changed the cleaning products I used in my house to more natural, went for all natural products for my hair and skin, and I went to a holistic doctor to get his take….and I've used and stuck with most everything he told me. My thought was that I obviously am more susceptible to illness and what can I do to better my chances in the fight of my life.
I only know that I did what I felt in my gut were the things I wanted to do. I so wish I had the correct cocktail for Jake. I wish I had the correct cocktail for you all suffering. I can only offer you hope and my own story.
A big hug and all the best, Laurie
-
- November 30, 2016 at 3:04 am
Hi Kerri,
So tough what you are going through. I feel for you. I don't know the answers and I wish I did. Maybe Jake is following his gut. I know when I hit stage 4 I looked at that as if it were up to me to save my life. I personally didn't plan on signing up for all the treatments that were going to tear down my immune system. I too had looked into a few places outside the US as options for more alternative therapies. But I was offered Keytruda as an immunotherapy, which was an immune booster….so….I stopped packing my bags and I wanted to try the Keytruda that was offered to me.
But that didn't mean I stopped there. I still believed that I needed to give my body as much living enzymes and health as I possibly could to help the Kertruda go to work. I believe in both Eastern and Western medicine and feel they can help each other. So I changed everything. Went 80% raw organic fruits and veggies, changed the cleaning products I used in my house to more natural, went for all natural products for my hair and skin, and I went to a holistic doctor to get his take….and I've used and stuck with most everything he told me. My thought was that I obviously am more susceptible to illness and what can I do to better my chances in the fight of my life.
I only know that I did what I felt in my gut were the things I wanted to do. I so wish I had the correct cocktail for Jake. I wish I had the correct cocktail for you all suffering. I can only offer you hope and my own story.
A big hug and all the best, Laurie
-
- You must be logged in to reply to this topic.