› Forums › General Melanoma Community › Update on Jake
- This topic has 60 replies, 13 voices, and was last updated 7 years, 8 months ago by
ManuelV.
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- May 22, 2016 at 3:12 pm
Hi all,
Just checked in to see how everyone is doing. Crazy, my same people I look for are doing the same thing we are over here. Enjoying the good days, fighting through the hard ones and always looking for the next option or making big decisions. To all of this I say–you are one tough group! Inspiring, supportive, knowledgable, kind and very helpful!
So Jake. He turned 19 Friday. A milestone. Another birthday! Yay! It's been a rough go lately. Jake failed keytruda. Disappointing to say the least. He just kept growing more tumors. His tumor load is so large now they put him on the Taf/Mek combo. Interesting that our specialist wants to wait for what he thinks is the optimum point of shrinkage the stop the combo and move right to ipi. Jake has not tried ipi. Well, after 3 good weeks on the combo he became VERY sick. Ha spent 7 days in a dark room w high fever, rigors, vomit etc. He refused to see his doctor. I knew he had to get up with so many lung tumors. He finally did. He is 6'1" and is down to 148 again. He just doesn't look good. They cut the Mek. He will start it again on a lower dose and is back on the Taf. His back was hurting so they did an MRI. His spine tumors have shrunk. That made for a pretty happy birthday:) Full scans June 13. Still plugging along. I just booked a big vacation Jake chose for July 22. A private, awesome beach house! Can't wait! Prayers and love to you all! Enjoy every good day!! We can do this❤️
Kerri–momofjake
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- May 22, 2016 at 4:19 pm
Kerri,
Thanks for the update. I've been thinking of you and Jake often. I'm very happy to hear the spine tumors are shrinking on the TAF/MEK combo. Hopefully they can find a good balance between effective dosage and side effects. Your attitude and outlook is amazing Kerri. Very inspirational. Hang in there. Keeping you and Jake in my prayers.
Brian
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- May 22, 2016 at 4:19 pm
Kerri,
Thanks for the update. I've been thinking of you and Jake often. I'm very happy to hear the spine tumors are shrinking on the TAF/MEK combo. Hopefully they can find a good balance between effective dosage and side effects. Your attitude and outlook is amazing Kerri. Very inspirational. Hang in there. Keeping you and Jake in my prayers.
Brian
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- May 22, 2016 at 4:19 pm
Kerri,
Thanks for the update. I've been thinking of you and Jake often. I'm very happy to hear the spine tumors are shrinking on the TAF/MEK combo. Hopefully they can find a good balance between effective dosage and side effects. Your attitude and outlook is amazing Kerri. Very inspirational. Hang in there. Keeping you and Jake in my prayers.
Brian
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- May 22, 2016 at 8:32 pm
Hi Kerri you and Jake have been in my thoughts lately! Sounds like some good news just in time for his birthday, but a mixed blessing overall. As you said, just keep plugging along! Jake is one tough cookie and sounds like a wonderful summer holiday right around the corner. Enjoy the beach – you deserve some R & R! Keep us updated! -
- May 22, 2016 at 8:32 pm
Hi Kerri you and Jake have been in my thoughts lately! Sounds like some good news just in time for his birthday, but a mixed blessing overall. As you said, just keep plugging along! Jake is one tough cookie and sounds like a wonderful summer holiday right around the corner. Enjoy the beach – you deserve some R & R! Keep us updated! -
- May 22, 2016 at 8:32 pm
Hi Kerri you and Jake have been in my thoughts lately! Sounds like some good news just in time for his birthday, but a mixed blessing overall. As you said, just keep plugging along! Jake is one tough cookie and sounds like a wonderful summer holiday right around the corner. Enjoy the beach – you deserve some R & R! Keep us updated! -
- May 23, 2016 at 7:11 am
Glad to hear. You may want to ask about ipi/nivo rather than ipi alone as a next step. I failed Keytruda too. Ipi/nivo has kept me stable at least for 11 weeks (first scan) and possibly more than that.
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- May 23, 2016 at 9:50 am
Keytuda failed Jake, Jake didn't fail Keytruda.
Good news about the spine tumours shrinking.
Ipi worked for me. Hopefully it will work for Jake. The doctors sound like they in Jake's corner.
Thinking of you and Jake. All the best for the holiday.
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- May 23, 2016 at 6:43 pm
Kerri,
I'm so glad to hear Jake's spinal tumors are shrinking!! I'm hoping you have a wonderful vacation together as a family. My thoughts and prayers are with all of you.
Maureen
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- May 23, 2016 at 6:43 pm
Kerri,
I'm so glad to hear Jake's spinal tumors are shrinking!! I'm hoping you have a wonderful vacation together as a family. My thoughts and prayers are with all of you.
Maureen
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- May 23, 2016 at 6:43 pm
Kerri,
I'm so glad to hear Jake's spinal tumors are shrinking!! I'm hoping you have a wonderful vacation together as a family. My thoughts and prayers are with all of you.
Maureen
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- May 23, 2016 at 6:52 pm
Hi Kerri,
I don't think I've written to you very often; however, you and Jake are in my prayers daily. As a young mom, it makes my my heart hurt whenever I think about Jake. My one-year-old son is a little blondie and your profile pic of Jake (and yourself) is how I picture my Beckett in 18 years or so.
Perhaps you've posted this before, but has Jake's doctor ever brought up the ipi/nivo combo?
Best wishes,
Ashley
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- May 23, 2016 at 6:52 pm
Hi Kerri,
I don't think I've written to you very often; however, you and Jake are in my prayers daily. As a young mom, it makes my my heart hurt whenever I think about Jake. My one-year-old son is a little blondie and your profile pic of Jake (and yourself) is how I picture my Beckett in 18 years or so.
Perhaps you've posted this before, but has Jake's doctor ever brought up the ipi/nivo combo?
Best wishes,
Ashley
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- May 23, 2016 at 6:52 pm
Hi Kerri,
I don't think I've written to you very often; however, you and Jake are in my prayers daily. As a young mom, it makes my my heart hurt whenever I think about Jake. My one-year-old son is a little blondie and your profile pic of Jake (and yourself) is how I picture my Beckett in 18 years or so.
Perhaps you've posted this before, but has Jake's doctor ever brought up the ipi/nivo combo?
Best wishes,
Ashley
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- May 26, 2016 at 4:37 am
Look at my Instagram kerribrown123. Look at Jake young:) I guess you just don't know how life will go. I have learned, been forced to learn to really just be happy in the moment:) Hug that baby!! They really are the biggest joy in life❤️❤️ Guess what? I can do this no matter how it goes:) Not sure how yet, but I just know I can.
Thanks for the note,
kerri
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- May 26, 2016 at 4:37 am
Look at my Instagram kerribrown123. Look at Jake young:) I guess you just don't know how life will go. I have learned, been forced to learn to really just be happy in the moment:) Hug that baby!! They really are the biggest joy in life❤️❤️ Guess what? I can do this no matter how it goes:) Not sure how yet, but I just know I can.
Thanks for the note,
kerri
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- May 26, 2016 at 4:37 am
Look at my Instagram kerribrown123. Look at Jake young:) I guess you just don't know how life will go. I have learned, been forced to learn to really just be happy in the moment:) Hug that baby!! They really are the biggest joy in life❤️❤️ Guess what? I can do this no matter how it goes:) Not sure how yet, but I just know I can.
Thanks for the note,
kerri
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- May 23, 2016 at 8:17 pm
Kerri – my husband maintained stable tumor load for 2+ years on Dabrafenib. He also experienced severe chills/fevers and had to start and stop treatment multiple times. He was never able to tolerate MEK and only took 3/4 dose of the Dabrefenib. It was a true trial and error experience to get to the right dose. Hope Jake is finally able to find the right dosage and that the effect is long lasting. Take care!
Ann
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- May 23, 2016 at 8:17 pm
Kerri – my husband maintained stable tumor load for 2+ years on Dabrafenib. He also experienced severe chills/fevers and had to start and stop treatment multiple times. He was never able to tolerate MEK and only took 3/4 dose of the Dabrefenib. It was a true trial and error experience to get to the right dose. Hope Jake is finally able to find the right dosage and that the effect is long lasting. Take care!
Ann
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- May 23, 2016 at 8:17 pm
Kerri – my husband maintained stable tumor load for 2+ years on Dabrafenib. He also experienced severe chills/fevers and had to start and stop treatment multiple times. He was never able to tolerate MEK and only took 3/4 dose of the Dabrefenib. It was a true trial and error experience to get to the right dose. Hope Jake is finally able to find the right dosage and that the effect is long lasting. Take care!
Ann
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- May 23, 2016 at 10:46 pm
Hi Kerri-
Glad there is some good news in your update with mets to spine shrinking. I also agree with Moira when she said Keytuda failed Jake; not that Jake failed Keytruda. After being NED 6 months ago and starting Nivo to find in the past few weeks that things went haywire for me is disheartning. I really hate that any of us go through turmoil; it's such a burden and I know how disappointing it is when the latest and greatest (PD-1's) don't work for you. But you're right….we can do this! Enjoy your vacation, your family will be in my prayers!!!
Love,
Josh
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- May 23, 2016 at 10:46 pm
Hi Kerri-
Glad there is some good news in your update with mets to spine shrinking. I also agree with Moira when she said Keytuda failed Jake; not that Jake failed Keytruda. After being NED 6 months ago and starting Nivo to find in the past few weeks that things went haywire for me is disheartning. I really hate that any of us go through turmoil; it's such a burden and I know how disappointing it is when the latest and greatest (PD-1's) don't work for you. But you're right….we can do this! Enjoy your vacation, your family will be in my prayers!!!
Love,
Josh
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- May 23, 2016 at 10:46 pm
Hi Kerri-
Glad there is some good news in your update with mets to spine shrinking. I also agree with Moira when she said Keytuda failed Jake; not that Jake failed Keytruda. After being NED 6 months ago and starting Nivo to find in the past few weeks that things went haywire for me is disheartning. I really hate that any of us go through turmoil; it's such a burden and I know how disappointing it is when the latest and greatest (PD-1's) don't work for you. But you're right….we can do this! Enjoy your vacation, your family will be in my prayers!!!
Love,
Josh
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- May 26, 2016 at 4:50 am
Hi Josh,
I always look for your posts and keep up on how you're doing. Since Artie passed I find it a little hard to get attached. But of course you do:) I hope you are doing okay and I am sorry about all the decisions and especially the disappointments. It really is the worst roller coaster and even though we all do our daily stuff…it's totally consuming! Cancer is a thief! But I still know we can do this!!!! Stay positive all you can!!
Prayers!!
kerri
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- May 26, 2016 at 4:50 am
Hi Josh,
I always look for your posts and keep up on how you're doing. Since Artie passed I find it a little hard to get attached. But of course you do:) I hope you are doing okay and I am sorry about all the decisions and especially the disappointments. It really is the worst roller coaster and even though we all do our daily stuff…it's totally consuming! Cancer is a thief! But I still know we can do this!!!! Stay positive all you can!!
Prayers!!
kerri
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- May 26, 2016 at 4:50 am
Hi Josh,
I always look for your posts and keep up on how you're doing. Since Artie passed I find it a little hard to get attached. But of course you do:) I hope you are doing okay and I am sorry about all the decisions and especially the disappointments. It really is the worst roller coaster and even though we all do our daily stuff…it's totally consuming! Cancer is a thief! But I still know we can do this!!!! Stay positive all you can!!
Prayers!!
kerri
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- May 24, 2016 at 2:46 am
Kerri,
I was thinking of you both yesterday, so glad some good response so far……..crossing fingers for June 13. A big vacation to celebrate sounds like just the thing, take care.
Rita
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- May 24, 2016 at 2:46 am
Kerri,
I was thinking of you both yesterday, so glad some good response so far……..crossing fingers for June 13. A big vacation to celebrate sounds like just the thing, take care.
Rita
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- May 24, 2016 at 2:46 am
Kerri,
I was thinking of you both yesterday, so glad some good response so far……..crossing fingers for June 13. A big vacation to celebrate sounds like just the thing, take care.
Rita
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- May 26, 2016 at 4:53 am
Hi Rita:)
Hows your husband? I hope you are both holding up. It's exhausting. Who thought we would be here??? Crazy. I need to look up what treatment your husband is on right now. Hopefully an immune therapy that works!! Prayers to you both! Keep us updated.
Kerri
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- May 26, 2016 at 4:53 am
Hi Rita:)
Hows your husband? I hope you are both holding up. It's exhausting. Who thought we would be here??? Crazy. I need to look up what treatment your husband is on right now. Hopefully an immune therapy that works!! Prayers to you both! Keep us updated.
Kerri
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- May 26, 2016 at 4:53 am
Hi Rita:)
Hows your husband? I hope you are both holding up. It's exhausting. Who thought we would be here??? Crazy. I need to look up what treatment your husband is on right now. Hopefully an immune therapy that works!! Prayers to you both! Keep us updated.
Kerri
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- May 26, 2016 at 4:53 am
Hi Rita:)
Hows your husband? I hope you are both holding up. It's exhausting. Who thought we would be here??? Crazy. I need to look up what treatment your husband is on right now. Hopefully an immune therapy that works!! Prayers to you both! Keep us updated.
Kerri
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- May 26, 2016 at 4:53 am
Hi Rita:)
Hows your husband? I hope you are both holding up. It's exhausting. Who thought we would be here??? Crazy. I need to look up what treatment your husband is on right now. Hopefully an immune therapy that works!! Prayers to you both! Keep us updated.
Kerri
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- May 26, 2016 at 4:53 am
Hi Rita:)
Hows your husband? I hope you are both holding up. It's exhausting. Who thought we would be here??? Crazy. I need to look up what treatment your husband is on right now. Hopefully an immune therapy that works!! Prayers to you both! Keep us updated.
Kerri
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- May 28, 2016 at 1:27 am
Keri,
Thanks for asking. We are at a small juncture, after 10 months on the BRAF combo- for some reason the side effects just became too difficult for Charles. Its been a hard year, and I have been working the the whole time. Our next step would be keytruda…..but we were considering a 3 month break, going to the islands and just relaxing. A bit of a risk…….we go for the 1st blood test tomorrow since he stopped the combo, and see the onc on the 31st…..if he remains stable, we are hoping to pack up and head for a happy place for 3 months, come back and then start immunotherapy. Its a toss up, the year has been hard. I am exhausted and need a break, Charles needs a great happy time bucket list…..but yet we worry at what cost? He is stable right now, tumor in lung shrunk from combo, left lobe nodule gone. The only worrying part is that the Lymph nodes show no change from the original PET scan to the last one 2 months ago – still lit up like crazy, like monsters lurking and laughing at us. But stable is stable, no progression in the other organs or bones so the combo did its job.
Plus we want to stop it before he fails on it, that way we can still have it in our back pocket if he is not a responder to Keytruda. My last day of work is June 21 for a while, we go on a "research trip" June 23 to the 5th of July to see about renting a place, and check it all out.
Sometimes I wonder if we are dreaming of this escape in August as a pipe dream, we'll see the onc 3 times before we go, get a scan to double check. If all stays good, we'll go. While we are in the Caribean if we have to fly stateside the closest hospital will be Moffit…….we live in San Diego now.
Melanoma is so many things, but one of the things it now is – is a guessing game, which fork in the road to take, what next step. I hope we get to really do a bucket list before we dive back in more agressively, keep the beast at bay. He is 6' and now 167, down from 196 when we started…….wish us luck with our choices.
I think of you and Jake a lot, and pray for him……enjoy July. We all need a few lazy summer days.
Rita
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- May 28, 2016 at 1:27 am
Keri,
Thanks for asking. We are at a small juncture, after 10 months on the BRAF combo- for some reason the side effects just became too difficult for Charles. Its been a hard year, and I have been working the the whole time. Our next step would be keytruda…..but we were considering a 3 month break, going to the islands and just relaxing. A bit of a risk…….we go for the 1st blood test tomorrow since he stopped the combo, and see the onc on the 31st…..if he remains stable, we are hoping to pack up and head for a happy place for 3 months, come back and then start immunotherapy. Its a toss up, the year has been hard. I am exhausted and need a break, Charles needs a great happy time bucket list…..but yet we worry at what cost? He is stable right now, tumor in lung shrunk from combo, left lobe nodule gone. The only worrying part is that the Lymph nodes show no change from the original PET scan to the last one 2 months ago – still lit up like crazy, like monsters lurking and laughing at us. But stable is stable, no progression in the other organs or bones so the combo did its job.
Plus we want to stop it before he fails on it, that way we can still have it in our back pocket if he is not a responder to Keytruda. My last day of work is June 21 for a while, we go on a "research trip" June 23 to the 5th of July to see about renting a place, and check it all out.
Sometimes I wonder if we are dreaming of this escape in August as a pipe dream, we'll see the onc 3 times before we go, get a scan to double check. If all stays good, we'll go. While we are in the Caribean if we have to fly stateside the closest hospital will be Moffit…….we live in San Diego now.
Melanoma is so many things, but one of the things it now is – is a guessing game, which fork in the road to take, what next step. I hope we get to really do a bucket list before we dive back in more agressively, keep the beast at bay. He is 6' and now 167, down from 196 when we started…….wish us luck with our choices.
I think of you and Jake a lot, and pray for him……enjoy July. We all need a few lazy summer days.
Rita
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- May 28, 2016 at 1:27 am
Keri,
Thanks for asking. We are at a small juncture, after 10 months on the BRAF combo- for some reason the side effects just became too difficult for Charles. Its been a hard year, and I have been working the the whole time. Our next step would be keytruda…..but we were considering a 3 month break, going to the islands and just relaxing. A bit of a risk…….we go for the 1st blood test tomorrow since he stopped the combo, and see the onc on the 31st…..if he remains stable, we are hoping to pack up and head for a happy place for 3 months, come back and then start immunotherapy. Its a toss up, the year has been hard. I am exhausted and need a break, Charles needs a great happy time bucket list…..but yet we worry at what cost? He is stable right now, tumor in lung shrunk from combo, left lobe nodule gone. The only worrying part is that the Lymph nodes show no change from the original PET scan to the last one 2 months ago – still lit up like crazy, like monsters lurking and laughing at us. But stable is stable, no progression in the other organs or bones so the combo did its job.
Plus we want to stop it before he fails on it, that way we can still have it in our back pocket if he is not a responder to Keytruda. My last day of work is June 21 for a while, we go on a "research trip" June 23 to the 5th of July to see about renting a place, and check it all out.
Sometimes I wonder if we are dreaming of this escape in August as a pipe dream, we'll see the onc 3 times before we go, get a scan to double check. If all stays good, we'll go. While we are in the Caribean if we have to fly stateside the closest hospital will be Moffit…….we live in San Diego now.
Melanoma is so many things, but one of the things it now is – is a guessing game, which fork in the road to take, what next step. I hope we get to really do a bucket list before we dive back in more agressively, keep the beast at bay. He is 6' and now 167, down from 196 when we started…….wish us luck with our choices.
I think of you and Jake a lot, and pray for him……enjoy July. We all need a few lazy summer days.
Rita
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- May 25, 2016 at 7:05 am
Hi Kerri – Wondering if this might help Jake … my sister was on Taf/Mek and felt great for the first week, then fever, chills, the vomiting, etc. set in and she was days in bed too. She's also prone to headaches and those combined with vomiting are a vicious circle. What we found worked in the end was to "pre-medicate" before the meds – an hour before any taf/mek, she'd take an odazetron (prescribed for nausea) and tylenol to beat the fever. The anti-nausea directions say "take when feeling nauseated" but by then, for her, it was too late. Heading it off before it started worked. Same with the tylenol – definitely worked on fevers to keep them lower or under control.
I wish Jake much future shrinkage!! and both of you a fabulous vacation in July.
Best,
Barb
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- May 25, 2016 at 7:05 am
Hi Kerri – Wondering if this might help Jake … my sister was on Taf/Mek and felt great for the first week, then fever, chills, the vomiting, etc. set in and she was days in bed too. She's also prone to headaches and those combined with vomiting are a vicious circle. What we found worked in the end was to "pre-medicate" before the meds – an hour before any taf/mek, she'd take an odazetron (prescribed for nausea) and tylenol to beat the fever. The anti-nausea directions say "take when feeling nauseated" but by then, for her, it was too late. Heading it off before it started worked. Same with the tylenol – definitely worked on fevers to keep them lower or under control.
I wish Jake much future shrinkage!! and both of you a fabulous vacation in July.
Best,
Barb
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- May 25, 2016 at 7:05 am
Hi Kerri – Wondering if this might help Jake … my sister was on Taf/Mek and felt great for the first week, then fever, chills, the vomiting, etc. set in and she was days in bed too. She's also prone to headaches and those combined with vomiting are a vicious circle. What we found worked in the end was to "pre-medicate" before the meds – an hour before any taf/mek, she'd take an odazetron (prescribed for nausea) and tylenol to beat the fever. The anti-nausea directions say "take when feeling nauseated" but by then, for her, it was too late. Heading it off before it started worked. Same with the tylenol – definitely worked on fevers to keep them lower or under control.
I wish Jake much future shrinkage!! and both of you a fabulous vacation in July.
Best,
Barb
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