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- This topic has 48 replies, 10 voices, and was last updated 8 years, 9 months ago by
Momofjake.
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- August 7, 2015 at 3:01 pm
Hi, I have read for months but haven't posted much. 11 mo ago my then 17yr old son was diagnosed. Now stage 4. It's everywhere(not sure about brain). I think in a weird numb way we were used to each scan being worse than before. He is now on keytruda. He had his 3rd dose yesterday. He feels great and looks better. We see shrinking tumors on his skin. He really feels it is working. A month ago I really felt like I would lose him soon. It's a miracle for us. So, he is now 18 and never talks(some grunting and lots of ignoring)and of course in in able! He has had it in his spine for 4 months with tumors 2.7cm. He has almost no pain but with the keytruda working I don't want permanent spine damage! I finally got him to see the radiologist. He had a large dose of radiation on his lower spine plus his infusion of keytruda/zomata yesterday. He is in a lot of pain in his legs. Poor kid! Senior year: freckle on his head, swollen node behind ear, 8 plosives nodes and saliva gland. Biochemo, radiation, new spot, metastatic, scan, liver, break to graduate, grows again, lungs. Spine, bones. Femurs, muscles, skin, ribs…he does everything…diet, natural things, he plays every sport everyday, sees friends all the time, tells NO one he is sick, plans college but has been stuck w mom for the last year a ton(worst thing ever for a 18yr old boy), and now more radiation. I see the keytruda shrinking things and he will have scans mid sept. Hoping we finally have a scan that says things are moving in a better direction. It's been full time cancer for a year. Praying for a good college send off as he learns to take care of himself mostly and live the life of a boy his age!! He is treated at huntsman in Utah and is going to school just 30 mi. From home!
Wondering about any spine mets, radiation there(went through his tummy), and always open to keytruda experiences! Been a year with a heavy heart as a mom, but also many blessings. You learn to live in the moment, what really matters and how to be grateful in any situation!
Thanks for enduring the novel here! I have been helped here many times. Prayers to all my friends fighting! Keep it up!
kerri–mom of Jake
- Replies
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- August 7, 2015 at 10:45 pm
I'm sorry your son is going through this at such a young age, but what great news about the Keytruda. Here's hoping NED for him! My father had radiation to the spine, which stopped the spinal tumor in its tracks and took away his back pain. On the minor downside, the radiation damaged a valve in his stomach, and he had trouble with heartburn thereafter. He had to eat small meals and take some standard OTC heartburn meds. Hope your son recovers without issue.
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- August 7, 2015 at 10:45 pm
I'm sorry your son is going through this at such a young age, but what great news about the Keytruda. Here's hoping NED for him! My father had radiation to the spine, which stopped the spinal tumor in its tracks and took away his back pain. On the minor downside, the radiation damaged a valve in his stomach, and he had trouble with heartburn thereafter. He had to eat small meals and take some standard OTC heartburn meds. Hope your son recovers without issue.
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- August 7, 2015 at 10:45 pm
I'm sorry your son is going through this at such a young age, but what great news about the Keytruda. Here's hoping NED for him! My father had radiation to the spine, which stopped the spinal tumor in its tracks and took away his back pain. On the minor downside, the radiation damaged a valve in his stomach, and he had trouble with heartburn thereafter. He had to eat small meals and take some standard OTC heartburn meds. Hope your son recovers without issue.
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- August 8, 2015 at 1:15 am
Unfortunately your sons experience sounds similar to mine was. At least as far as every scan getting worse. Tumors in the spine. Radiation and meds.
I went through 11 months of meds and nothing shrank. It was always stuff growing and new stuff. Then on the braf combo I finally heard some tumors stayed the same but others grew and more showed up. Fortunately I got in the keytruda extended access program. I found out later my parents thought they were going to lose me but with keytruda I got better. Unfortunately by then I had gone from 7 tumors to over 30. But still it was able to shrink 18 in the first scan. I've been on it and the other pd1 for over 14 months but trying hard since May to try and get in a good trial because a new tumor finally showed up. Granted others grew but slowly.
One thing the docs need to be careful with the spine tumor is if it is narrowing the spinal canal. A simple ct scan shows this. According to the docs I was a hairs breath away from being paralyzed and I had no clue. Yes my back hurt if I sat and tried to tie my shoes but that was about it for pain in the back. Well not really hurt it was more like a pulling sensation in my back. A second round of radiation to that t10 vertebrae kept that from happening then 13 months later it showed it growing again and narrowing the canal. So last month I had ablation done to it because they can't radiate there again.
The pain in his legs could be neuropathy. Maybe caused by the radiation. I would put one of those moist microwave heating pads on my legs or feet and it seemed to help. But mine wasn't that severe a case. Also walking helped which sounds like he does lots of such activity which is great.
I assume he is also getting regular brain MRI. I can't stress enough how important it is to catch such things early. I just had one yesterday and waiting for the results. I think I may have waited a little longer than I would like because it has been almost 5 months. But I also don't like MRI so in a way I'm glad too. Also be careful when they do the contrast. If he feels like he is choking hit the panic button because that can be a bad reaction to that type of contrast. That happened to me yesterday.
Although keytruda is great. Many people have got to Ned on it even after being through lots of things. But in my opinion if the first scan shows any growth maybe give it a couple more doses to make sure it isn't going to be enough by itself. I would suggest not doing like I did where I thought it would start shrinking the other tumors if I gave it enough time or radiated those. It wasn't that keytruda wasnt great for me and slowed the growth down but it just wasn't enough by itself. So although it sounds like you are finally going to see a scan showing shrinking if not everything is you might want to see about a trial that combines keytruda with something else.
Anyway that's my 2 cents of having been and still going through this. It sounds like he is doing everything great. Trying to eat healthy and lots of exercise and trying to live normal.
Artie
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- August 8, 2015 at 3:46 am
Thanks for the comments and help! Artie, I have read so many posts from you! Thank you so much for your post. I wish jake could meet you here. He is so quiet and talks to no one. We will see:)
K, I am not so fond of our doctor. He says no brain MRI unless jake has symptoms. It's been 6 months. Lots of growth since then everywhere else!! Frustrating. I had to push him for the spine MRI when Jake had it there since mid Feb and has pain. The dr was doing nothing! We are at a cancer institute w melanoma specialists! Just seems like they would be watching his spine!! I think it was T10 jake had radiated as well. They did surrounding area as well I guess. Not sure what the long term effects will be. This 18 yr old healthy body. I pray that helps. But he has had so much already! We are in the middle of his DNA full strand being done. This will allow dr to make him a personalized treatment. This took me awhile to put together and get thru insurance.
Well, I will be keeping up! Jake just went out on 4-wheelers in the rain w friends! Extra pain meds. Sick of being sick I guess.
Thanks again my new friends. Happy to be able to have this place:)
kerri-mom of Jake
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- August 8, 2015 at 3:46 am
Thanks for the comments and help! Artie, I have read so many posts from you! Thank you so much for your post. I wish jake could meet you here. He is so quiet and talks to no one. We will see:)
K, I am not so fond of our doctor. He says no brain MRI unless jake has symptoms. It's been 6 months. Lots of growth since then everywhere else!! Frustrating. I had to push him for the spine MRI when Jake had it there since mid Feb and has pain. The dr was doing nothing! We are at a cancer institute w melanoma specialists! Just seems like they would be watching his spine!! I think it was T10 jake had radiated as well. They did surrounding area as well I guess. Not sure what the long term effects will be. This 18 yr old healthy body. I pray that helps. But he has had so much already! We are in the middle of his DNA full strand being done. This will allow dr to make him a personalized treatment. This took me awhile to put together and get thru insurance.
Well, I will be keeping up! Jake just went out on 4-wheelers in the rain w friends! Extra pain meds. Sick of being sick I guess.
Thanks again my new friends. Happy to be able to have this place:)
kerri-mom of Jake
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- August 8, 2015 at 3:46 am
Thanks for the comments and help! Artie, I have read so many posts from you! Thank you so much for your post. I wish jake could meet you here. He is so quiet and talks to no one. We will see:)
K, I am not so fond of our doctor. He says no brain MRI unless jake has symptoms. It's been 6 months. Lots of growth since then everywhere else!! Frustrating. I had to push him for the spine MRI when Jake had it there since mid Feb and has pain. The dr was doing nothing! We are at a cancer institute w melanoma specialists! Just seems like they would be watching his spine!! I think it was T10 jake had radiated as well. They did surrounding area as well I guess. Not sure what the long term effects will be. This 18 yr old healthy body. I pray that helps. But he has had so much already! We are in the middle of his DNA full strand being done. This will allow dr to make him a personalized treatment. This took me awhile to put together and get thru insurance.
Well, I will be keeping up! Jake just went out on 4-wheelers in the rain w friends! Extra pain meds. Sick of being sick I guess.
Thanks again my new friends. Happy to be able to have this place:)
kerri-mom of Jake
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- August 8, 2015 at 1:33 pm
Hi Kerri, I just want to add to what Artie said about pushing to get Mri of brain done. If you catch Melanoma tumors early they can usually be treated by cyberknife or gamma knife surgery which has very good results. I had three that were all about 3 to 5 mm in size 2 years ago and all were zapped away in one 50 min session. I hear too many story of people that only had scans done after having symptoms which usually means that the tumors are large and difficult to treat. Wishing you the best Kerri!!! Ed
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- August 8, 2015 at 1:33 pm
Hi Kerri, I just want to add to what Artie said about pushing to get Mri of brain done. If you catch Melanoma tumors early they can usually be treated by cyberknife or gamma knife surgery which has very good results. I had three that were all about 3 to 5 mm in size 2 years ago and all were zapped away in one 50 min session. I hear too many story of people that only had scans done after having symptoms which usually means that the tumors are large and difficult to treat. Wishing you the best Kerri!!! Ed
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- August 8, 2015 at 1:33 pm
Hi Kerri, I just want to add to what Artie said about pushing to get Mri of brain done. If you catch Melanoma tumors early they can usually be treated by cyberknife or gamma knife surgery which has very good results. I had three that were all about 3 to 5 mm in size 2 years ago and all were zapped away in one 50 min session. I hear too many story of people that only had scans done after having symptoms which usually means that the tumors are large and difficult to treat. Wishing you the best Kerri!!! Ed
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- August 8, 2015 at 5:02 pm
Some docs can be odd but I've found I just keep that doc for what they are willing to do for me and go to another doc to get what I think I need. So his main doc sounds great to be willing to do that DNa personalized treatment. Of course with your pushing. So that doc is definitely a keeper. To get the odd things done like the ablation I like to go to my mayo doc. I'm not sure how far mayo is from Utah but I think there is one somewhere out west. I go to the one in Minnesota. Also other places you might like can do an MRI. With all the tumors he has he definitely needs it sooner than later.
As far as huntsman other than their add on tv I don't know a lot about it but seems like a good place. I do remember on here someone posted about their virus treatment for melanoma using I think the common cold virus had a 60% response rate and some cures. So that is fantastic. When I looked into it though they didn't allow it for those of us with tumors in the bone. Never found out why though.
Sounds like he's doing good and he has a great mom pushing for things he needs.
Artie
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- August 8, 2015 at 5:02 pm
Some docs can be odd but I've found I just keep that doc for what they are willing to do for me and go to another doc to get what I think I need. So his main doc sounds great to be willing to do that DNa personalized treatment. Of course with your pushing. So that doc is definitely a keeper. To get the odd things done like the ablation I like to go to my mayo doc. I'm not sure how far mayo is from Utah but I think there is one somewhere out west. I go to the one in Minnesota. Also other places you might like can do an MRI. With all the tumors he has he definitely needs it sooner than later.
As far as huntsman other than their add on tv I don't know a lot about it but seems like a good place. I do remember on here someone posted about their virus treatment for melanoma using I think the common cold virus had a 60% response rate and some cures. So that is fantastic. When I looked into it though they didn't allow it for those of us with tumors in the bone. Never found out why though.
Sounds like he's doing good and he has a great mom pushing for things he needs.
Artie
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- August 8, 2015 at 5:02 pm
Some docs can be odd but I've found I just keep that doc for what they are willing to do for me and go to another doc to get what I think I need. So his main doc sounds great to be willing to do that DNa personalized treatment. Of course with your pushing. So that doc is definitely a keeper. To get the odd things done like the ablation I like to go to my mayo doc. I'm not sure how far mayo is from Utah but I think there is one somewhere out west. I go to the one in Minnesota. Also other places you might like can do an MRI. With all the tumors he has he definitely needs it sooner than later.
As far as huntsman other than their add on tv I don't know a lot about it but seems like a good place. I do remember on here someone posted about their virus treatment for melanoma using I think the common cold virus had a 60% response rate and some cures. So that is fantastic. When I looked into it though they didn't allow it for those of us with tumors in the bone. Never found out why though.
Sounds like he's doing good and he has a great mom pushing for things he needs.
Artie
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- August 8, 2015 at 1:15 am
Unfortunately your sons experience sounds similar to mine was. At least as far as every scan getting worse. Tumors in the spine. Radiation and meds.
I went through 11 months of meds and nothing shrank. It was always stuff growing and new stuff. Then on the braf combo I finally heard some tumors stayed the same but others grew and more showed up. Fortunately I got in the keytruda extended access program. I found out later my parents thought they were going to lose me but with keytruda I got better. Unfortunately by then I had gone from 7 tumors to over 30. But still it was able to shrink 18 in the first scan. I've been on it and the other pd1 for over 14 months but trying hard since May to try and get in a good trial because a new tumor finally showed up. Granted others grew but slowly.
One thing the docs need to be careful with the spine tumor is if it is narrowing the spinal canal. A simple ct scan shows this. According to the docs I was a hairs breath away from being paralyzed and I had no clue. Yes my back hurt if I sat and tried to tie my shoes but that was about it for pain in the back. Well not really hurt it was more like a pulling sensation in my back. A second round of radiation to that t10 vertebrae kept that from happening then 13 months later it showed it growing again and narrowing the canal. So last month I had ablation done to it because they can't radiate there again.
The pain in his legs could be neuropathy. Maybe caused by the radiation. I would put one of those moist microwave heating pads on my legs or feet and it seemed to help. But mine wasn't that severe a case. Also walking helped which sounds like he does lots of such activity which is great.
I assume he is also getting regular brain MRI. I can't stress enough how important it is to catch such things early. I just had one yesterday and waiting for the results. I think I may have waited a little longer than I would like because it has been almost 5 months. But I also don't like MRI so in a way I'm glad too. Also be careful when they do the contrast. If he feels like he is choking hit the panic button because that can be a bad reaction to that type of contrast. That happened to me yesterday.
Although keytruda is great. Many people have got to Ned on it even after being through lots of things. But in my opinion if the first scan shows any growth maybe give it a couple more doses to make sure it isn't going to be enough by itself. I would suggest not doing like I did where I thought it would start shrinking the other tumors if I gave it enough time or radiated those. It wasn't that keytruda wasnt great for me and slowed the growth down but it just wasn't enough by itself. So although it sounds like you are finally going to see a scan showing shrinking if not everything is you might want to see about a trial that combines keytruda with something else.
Anyway that's my 2 cents of having been and still going through this. It sounds like he is doing everything great. Trying to eat healthy and lots of exercise and trying to live normal.
Artie
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- August 8, 2015 at 1:15 am
Unfortunately your sons experience sounds similar to mine was. At least as far as every scan getting worse. Tumors in the spine. Radiation and meds.
I went through 11 months of meds and nothing shrank. It was always stuff growing and new stuff. Then on the braf combo I finally heard some tumors stayed the same but others grew and more showed up. Fortunately I got in the keytruda extended access program. I found out later my parents thought they were going to lose me but with keytruda I got better. Unfortunately by then I had gone from 7 tumors to over 30. But still it was able to shrink 18 in the first scan. I've been on it and the other pd1 for over 14 months but trying hard since May to try and get in a good trial because a new tumor finally showed up. Granted others grew but slowly.
One thing the docs need to be careful with the spine tumor is if it is narrowing the spinal canal. A simple ct scan shows this. According to the docs I was a hairs breath away from being paralyzed and I had no clue. Yes my back hurt if I sat and tried to tie my shoes but that was about it for pain in the back. Well not really hurt it was more like a pulling sensation in my back. A second round of radiation to that t10 vertebrae kept that from happening then 13 months later it showed it growing again and narrowing the canal. So last month I had ablation done to it because they can't radiate there again.
The pain in his legs could be neuropathy. Maybe caused by the radiation. I would put one of those moist microwave heating pads on my legs or feet and it seemed to help. But mine wasn't that severe a case. Also walking helped which sounds like he does lots of such activity which is great.
I assume he is also getting regular brain MRI. I can't stress enough how important it is to catch such things early. I just had one yesterday and waiting for the results. I think I may have waited a little longer than I would like because it has been almost 5 months. But I also don't like MRI so in a way I'm glad too. Also be careful when they do the contrast. If he feels like he is choking hit the panic button because that can be a bad reaction to that type of contrast. That happened to me yesterday.
Although keytruda is great. Many people have got to Ned on it even after being through lots of things. But in my opinion if the first scan shows any growth maybe give it a couple more doses to make sure it isn't going to be enough by itself. I would suggest not doing like I did where I thought it would start shrinking the other tumors if I gave it enough time or radiated those. It wasn't that keytruda wasnt great for me and slowed the growth down but it just wasn't enough by itself. So although it sounds like you are finally going to see a scan showing shrinking if not everything is you might want to see about a trial that combines keytruda with something else.
Anyway that's my 2 cents of having been and still going through this. It sounds like he is doing everything great. Trying to eat healthy and lots of exercise and trying to live normal.
Artie
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- August 8, 2015 at 3:54 pm
Kerri
I just want to say my heart aches for you. My son was 21 when diagnosed, just before senior year of college. had to take a semester off while having surgeries and interferon. Had to move back home. Took him a long time to tell his closest freinds he was sick. Never would talk to us about it! (Boys!!)
Thankfully my son was able to go back to school, finish up and is 5 years out NED (he had a very rare oral melanoma on his tongue, spread to one lymph node).
I hope so much keytruda does the trick and he is able to start college and do all those things we always dream of for our kids.
Keep fighting
Becky
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- August 8, 2015 at 3:54 pm
Kerri
I just want to say my heart aches for you. My son was 21 when diagnosed, just before senior year of college. had to take a semester off while having surgeries and interferon. Had to move back home. Took him a long time to tell his closest freinds he was sick. Never would talk to us about it! (Boys!!)
Thankfully my son was able to go back to school, finish up and is 5 years out NED (he had a very rare oral melanoma on his tongue, spread to one lymph node).
I hope so much keytruda does the trick and he is able to start college and do all those things we always dream of for our kids.
Keep fighting
Becky
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- August 8, 2015 at 3:54 pm
Kerri
I just want to say my heart aches for you. My son was 21 when diagnosed, just before senior year of college. had to take a semester off while having surgeries and interferon. Had to move back home. Took him a long time to tell his closest freinds he was sick. Never would talk to us about it! (Boys!!)
Thankfully my son was able to go back to school, finish up and is 5 years out NED (he had a very rare oral melanoma on his tongue, spread to one lymph node).
I hope so much keytruda does the trick and he is able to start college and do all those things we always dream of for our kids.
Keep fighting
Becky
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- August 9, 2015 at 12:28 am
So sorry for all that you and your son have been going through. I cannot imagine. However, I absolutely agree with the advice from Ed and Artie. An MRI of the brain is essential for any melanoma patient with mets…especially when dealing with spinal issues! They are precisely on point when pointing out that brain mets are much more easily and EFFECTIVELY dealt with when found early and small, rather than when they are large enough to be symptomatic. Demand a brain MRI…or a second opinion! My fingers are crossed for you both. Celeste
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- August 9, 2015 at 12:28 am
So sorry for all that you and your son have been going through. I cannot imagine. However, I absolutely agree with the advice from Ed and Artie. An MRI of the brain is essential for any melanoma patient with mets…especially when dealing with spinal issues! They are precisely on point when pointing out that brain mets are much more easily and EFFECTIVELY dealt with when found early and small, rather than when they are large enough to be symptomatic. Demand a brain MRI…or a second opinion! My fingers are crossed for you both. Celeste
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- August 9, 2015 at 12:28 am
So sorry for all that you and your son have been going through. I cannot imagine. However, I absolutely agree with the advice from Ed and Artie. An MRI of the brain is essential for any melanoma patient with mets…especially when dealing with spinal issues! They are precisely on point when pointing out that brain mets are much more easily and EFFECTIVELY dealt with when found early and small, rather than when they are large enough to be symptomatic. Demand a brain MRI…or a second opinion! My fingers are crossed for you both. Celeste
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- August 9, 2015 at 3:28 am
I am so sorry!!…. My husband also has mets in the spine. Not only does your son need a brain MRI but he needs a full spine MRI!! CT can miss a lot when dealing with issues that can occur in the spine… Demand a MRI or get a second opinion! I don't know if you FB but feel free to friend me or message anytime ( Emily Ryder Turner)…. Once again I'm so sorry!!
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- August 9, 2015 at 3:28 am
I am so sorry!!…. My husband also has mets in the spine. Not only does your son need a brain MRI but he needs a full spine MRI!! CT can miss a lot when dealing with issues that can occur in the spine… Demand a MRI or get a second opinion! I don't know if you FB but feel free to friend me or message anytime ( Emily Ryder Turner)…. Once again I'm so sorry!!
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- August 9, 2015 at 3:28 am
I am so sorry!!…. My husband also has mets in the spine. Not only does your son need a brain MRI but he needs a full spine MRI!! CT can miss a lot when dealing with issues that can occur in the spine… Demand a MRI or get a second opinion! I don't know if you FB but feel free to friend me or message anytime ( Emily Ryder Turner)…. Once again I'm so sorry!!
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- August 9, 2015 at 1:18 pm
A BIG thanks to my new best friends. I wish I wrote on here earlier…had some pretty lonely times. His dad and I have a very peaceful, kind divorce, but are not married. His dad recently moved away as well. Just me and my silent teenage boy!!
I woke up and my first thought was–Jake needs his brain scanned. Then I went to see if any of you had posted. Thank you. Jake is impossible to get to the dr but I will begin my push! He still is struggling from the radiation. Lots of bone pain and says he can't bend from the waist at all. Praying for no long term damage. It will be tough to get him in! He hates scans, no anxiety that I can see even when it's always been tragic news! Each time strangely he was putting on his shoes to go out when the doc called. He simply laced his shoes and left. Never said a word to his friends. He might say that he thought it would be worse or raise his eyebrows. Geez. He is seriously a strong guy! When I see him down like now I wonder how long he has…i hate that. Becky, thank you. Celeste too. I appreciate the kindness more than I expected:) I will push for the MRI. I did ask for a whole spine and my doc was sarcastic and said it would take 6 hours. Making me feel dumb. When jake finally asked a question he answered–because life isn't perfect jake! I was not happy. It was a good question about why keytruda only works on some people ! Trust me doc, jake knows better than most that life isn't perfect. I wanted to kick the doc. But my nature is silence. Ugh.
Thsnks for helping me. Time to get bolder!
Also jake won't travel for medical care!
With gratitude,
kerri
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- August 9, 2015 at 1:18 pm
A BIG thanks to my new best friends. I wish I wrote on here earlier…had some pretty lonely times. His dad and I have a very peaceful, kind divorce, but are not married. His dad recently moved away as well. Just me and my silent teenage boy!!
I woke up and my first thought was–Jake needs his brain scanned. Then I went to see if any of you had posted. Thank you. Jake is impossible to get to the dr but I will begin my push! He still is struggling from the radiation. Lots of bone pain and says he can't bend from the waist at all. Praying for no long term damage. It will be tough to get him in! He hates scans, no anxiety that I can see even when it's always been tragic news! Each time strangely he was putting on his shoes to go out when the doc called. He simply laced his shoes and left. Never said a word to his friends. He might say that he thought it would be worse or raise his eyebrows. Geez. He is seriously a strong guy! When I see him down like now I wonder how long he has…i hate that. Becky, thank you. Celeste too. I appreciate the kindness more than I expected:) I will push for the MRI. I did ask for a whole spine and my doc was sarcastic and said it would take 6 hours. Making me feel dumb. When jake finally asked a question he answered–because life isn't perfect jake! I was not happy. It was a good question about why keytruda only works on some people ! Trust me doc, jake knows better than most that life isn't perfect. I wanted to kick the doc. But my nature is silence. Ugh.
Thsnks for helping me. Time to get bolder!
Also jake won't travel for medical care!
With gratitude,
kerri
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- August 9, 2015 at 1:18 pm
A BIG thanks to my new best friends. I wish I wrote on here earlier…had some pretty lonely times. His dad and I have a very peaceful, kind divorce, but are not married. His dad recently moved away as well. Just me and my silent teenage boy!!
I woke up and my first thought was–Jake needs his brain scanned. Then I went to see if any of you had posted. Thank you. Jake is impossible to get to the dr but I will begin my push! He still is struggling from the radiation. Lots of bone pain and says he can't bend from the waist at all. Praying for no long term damage. It will be tough to get him in! He hates scans, no anxiety that I can see even when it's always been tragic news! Each time strangely he was putting on his shoes to go out when the doc called. He simply laced his shoes and left. Never said a word to his friends. He might say that he thought it would be worse or raise his eyebrows. Geez. He is seriously a strong guy! When I see him down like now I wonder how long he has…i hate that. Becky, thank you. Celeste too. I appreciate the kindness more than I expected:) I will push for the MRI. I did ask for a whole spine and my doc was sarcastic and said it would take 6 hours. Making me feel dumb. When jake finally asked a question he answered–because life isn't perfect jake! I was not happy. It was a good question about why keytruda only works on some people ! Trust me doc, jake knows better than most that life isn't perfect. I wanted to kick the doc. But my nature is silence. Ugh.
Thsnks for helping me. Time to get bolder!
Also jake won't travel for medical care!
With gratitude,
kerri
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- August 9, 2015 at 9:21 pm
He can't bend from the waist at all? So like even if he is sitting down and tries to bend over to touch his ankles he can't? If so that is pretty serious. When I was in that shape the docs said based on the MRI I was a hairs breath from being paralyzed. They were amazed I wasn't already and are still amazed I made it through. That was feb of 2014. I could do that bend if I stuggled but it was a bad tugging feeling. I still put my shoes on in the recliner with it angled just right but I can sit and do it if I have to.
Your doc is pretty much right about the 6 hours. They scan the spine in usually 3 sections. The top I think is called the cervical. Then the thoracic. Then the lumbar. Each section can take an hour. Then they put contrast in and do it again. So yes 6 hours. Or they can split it up in multiple days. Or since if I understand right he's already had a spine ct so the doc could know the suspected problem spots and only do that section if everything is in that section. Also some places have better MRI machines. Like the 3 tesla bore MRI cuts the scan time in half and gives twice as good pictures. Most places only have the 1.5 tesla and it's usually the tube.
As far as why a med only works on some based on what I understood from my mayo doc it has to do with the gene mutations of each tumor. These mutations change over time. Thus keytruda targets the pd1 protein. If that pathway works then great. However it can also be that the same person like me has some tumors that respond and some that don't. It has to do with those mutations in each tumor if I understood my mayo doc right. That's why combo treatments seem to be better than monotherapy because they target two pathways. Also some trials target even more than that. 10 years ago the inventor of yervoy was ridiculed by his colleagues. But he persevered which eventually brought about a new age of immunothrapy meds like pd1 and others in trials.
Artie
-
- August 9, 2015 at 9:21 pm
He can't bend from the waist at all? So like even if he is sitting down and tries to bend over to touch his ankles he can't? If so that is pretty serious. When I was in that shape the docs said based on the MRI I was a hairs breath from being paralyzed. They were amazed I wasn't already and are still amazed I made it through. That was feb of 2014. I could do that bend if I stuggled but it was a bad tugging feeling. I still put my shoes on in the recliner with it angled just right but I can sit and do it if I have to.
Your doc is pretty much right about the 6 hours. They scan the spine in usually 3 sections. The top I think is called the cervical. Then the thoracic. Then the lumbar. Each section can take an hour. Then they put contrast in and do it again. So yes 6 hours. Or they can split it up in multiple days. Or since if I understand right he's already had a spine ct so the doc could know the suspected problem spots and only do that section if everything is in that section. Also some places have better MRI machines. Like the 3 tesla bore MRI cuts the scan time in half and gives twice as good pictures. Most places only have the 1.5 tesla and it's usually the tube.
As far as why a med only works on some based on what I understood from my mayo doc it has to do with the gene mutations of each tumor. These mutations change over time. Thus keytruda targets the pd1 protein. If that pathway works then great. However it can also be that the same person like me has some tumors that respond and some that don't. It has to do with those mutations in each tumor if I understood my mayo doc right. That's why combo treatments seem to be better than monotherapy because they target two pathways. Also some trials target even more than that. 10 years ago the inventor of yervoy was ridiculed by his colleagues. But he persevered which eventually brought about a new age of immunothrapy meds like pd1 and others in trials.
Artie
-
- August 9, 2015 at 9:21 pm
He can't bend from the waist at all? So like even if he is sitting down and tries to bend over to touch his ankles he can't? If so that is pretty serious. When I was in that shape the docs said based on the MRI I was a hairs breath from being paralyzed. They were amazed I wasn't already and are still amazed I made it through. That was feb of 2014. I could do that bend if I stuggled but it was a bad tugging feeling. I still put my shoes on in the recliner with it angled just right but I can sit and do it if I have to.
Your doc is pretty much right about the 6 hours. They scan the spine in usually 3 sections. The top I think is called the cervical. Then the thoracic. Then the lumbar. Each section can take an hour. Then they put contrast in and do it again. So yes 6 hours. Or they can split it up in multiple days. Or since if I understand right he's already had a spine ct so the doc could know the suspected problem spots and only do that section if everything is in that section. Also some places have better MRI machines. Like the 3 tesla bore MRI cuts the scan time in half and gives twice as good pictures. Most places only have the 1.5 tesla and it's usually the tube.
As far as why a med only works on some based on what I understood from my mayo doc it has to do with the gene mutations of each tumor. These mutations change over time. Thus keytruda targets the pd1 protein. If that pathway works then great. However it can also be that the same person like me has some tumors that respond and some that don't. It has to do with those mutations in each tumor if I understood my mayo doc right. That's why combo treatments seem to be better than monotherapy because they target two pathways. Also some trials target even more than that. 10 years ago the inventor of yervoy was ridiculed by his colleagues. But he persevered which eventually brought about a new age of immunothrapy meds like pd1 and others in trials.
Artie
-
- August 10, 2015 at 12:34 am
Kerri,
Please don't ever feel dumb – how anyone navigates this nightmare maze of doctors, reports, scans and medicines I'll never know! Being so frightened and having to understand so much so quickly……you are doing great. My husband hasn't even had the first scan yet to see if the BRAF combo drugs are working, we only met with oncologist once so far and truly – they may be busy, they may have to tell you that you need to see others to answer a specific question – but they can also treat you with the dignity you deserve.
I will continue to think of your son, and pray he has many concerts ahead of him. You are amazing to handle this alone – I have learned one thing from this site, you need to push, you need to ask, you need to not accept pats on the head and telling you half answers – we need to be gladiators.
Take care, and go get those MRIs that everyone says you should do – channel your inner warrior!
Rita
-
- August 10, 2015 at 12:34 am
Kerri,
Please don't ever feel dumb – how anyone navigates this nightmare maze of doctors, reports, scans and medicines I'll never know! Being so frightened and having to understand so much so quickly……you are doing great. My husband hasn't even had the first scan yet to see if the BRAF combo drugs are working, we only met with oncologist once so far and truly – they may be busy, they may have to tell you that you need to see others to answer a specific question – but they can also treat you with the dignity you deserve.
I will continue to think of your son, and pray he has many concerts ahead of him. You are amazing to handle this alone – I have learned one thing from this site, you need to push, you need to ask, you need to not accept pats on the head and telling you half answers – we need to be gladiators.
Take care, and go get those MRIs that everyone says you should do – channel your inner warrior!
Rita
-
- August 10, 2015 at 12:34 am
Kerri,
Please don't ever feel dumb – how anyone navigates this nightmare maze of doctors, reports, scans and medicines I'll never know! Being so frightened and having to understand so much so quickly……you are doing great. My husband hasn't even had the first scan yet to see if the BRAF combo drugs are working, we only met with oncologist once so far and truly – they may be busy, they may have to tell you that you need to see others to answer a specific question – but they can also treat you with the dignity you deserve.
I will continue to think of your son, and pray he has many concerts ahead of him. You are amazing to handle this alone – I have learned one thing from this site, you need to push, you need to ask, you need to not accept pats on the head and telling you half answers – we need to be gladiators.
Take care, and go get those MRIs that everyone says you should do – channel your inner warrior!
Rita
-
- August 9, 2015 at 11:35 pm
Only since radiation on TH he can't move well. He has a lot of pain and says bending is terribly painful. He does have other spine tumors up higher, in fact one is larger I believe! I need to check the scan report. I find the reports hard to read! He had lower back MRI only and T10 was completely tumor w the hard exterior still holding. So he has no structural damage yet to his back that we can tell. How fast does this recover and how fast will he feel better from this high dose of radiation? He has a trip planned w friends in 3 days. 11 hour drive to see his favorite band. He planned it months ago. I worried he wouldn't make it to the concert date…thank you keytuda!
Love to all,
kerri
-
- August 10, 2015 at 1:31 am
I've had pretty much every bone in my thoracic and lumbar spine radiated at least once. The doc called it high dose radiation. Usually it was 30 gray in 5 fractions. A fraction is a treatment. What radiation did your son get? For me I never had such a problem. Actually the spot they radiated usually felt the same or better. Granted the affects of the radiation sometimes made me feel crummy. So how fast he recovers depends if he had an even higher dose and or larger number of treatments I would think. If he had the same high dose as me I would think he wouldn't have such a pain. If he had a higher dose then I would assume that is what is causing the pain. Also depending on how good the radiation doc and team is they could have damaged some nerves in that area causing the pain. Very easy with external beam radiation. Not sure how long radiation caused nerve damage would take to heal if that is what it is. When I had my neck zapped last winter and the hair fell out you could see a very precise line so I know they zapped me exactly where they intended each time. But the spine is a tricky area to radiate. I would have preferred proton beam radiation because it is super precise and dissipates from the target area very quick so surrounding tissue doesn't get as much exposure. But the docs wouldn't do it probably because it is very expensive for the insurance. But it is intended for radiating the spine especially if the central nervous system is involved. My cousins son had high dose radiation for his colo rectal cancer and I remember him saying it still hurt a year later but he didn't know how much he received but it was one treatment.
Artie
-
- August 10, 2015 at 5:22 am
Artie,
we did proton therapy in Seattle in Feb 2015. I pushed for it on his head and neck given the areas being radiated!! Ear, eye, asophagus etc! A perfect line w no hair still on his head. Bummer at 18. I need to check how strong his was to his spine
Rita, thank you. Inner warrior–I have that. I have had to turn over stones and find people I would never have done before. Thank you for helping me know what I have to do and finding the courage to do whatever it takes to help my boy stay healthy as long as he can. He should have the chance to live a little life…my Instagram is kerribrown123. Jake had one for updates my daughter ran too jakedclark22. His story:)
thanks everyone. I will pass on the support wherever I can!!
kerri
-
- August 10, 2015 at 5:22 am
Artie,
we did proton therapy in Seattle in Feb 2015. I pushed for it on his head and neck given the areas being radiated!! Ear, eye, asophagus etc! A perfect line w no hair still on his head. Bummer at 18. I need to check how strong his was to his spine
Rita, thank you. Inner warrior–I have that. I have had to turn over stones and find people I would never have done before. Thank you for helping me know what I have to do and finding the courage to do whatever it takes to help my boy stay healthy as long as he can. He should have the chance to live a little life…my Instagram is kerribrown123. Jake had one for updates my daughter ran too jakedclark22. His story:)
thanks everyone. I will pass on the support wherever I can!!
kerri
-
- August 10, 2015 at 5:22 am
Artie,
we did proton therapy in Seattle in Feb 2015. I pushed for it on his head and neck given the areas being radiated!! Ear, eye, asophagus etc! A perfect line w no hair still on his head. Bummer at 18. I need to check how strong his was to his spine
Rita, thank you. Inner warrior–I have that. I have had to turn over stones and find people I would never have done before. Thank you for helping me know what I have to do and finding the courage to do whatever it takes to help my boy stay healthy as long as he can. He should have the chance to live a little life…my Instagram is kerribrown123. Jake had one for updates my daughter ran too jakedclark22. His story:)
thanks everyone. I will pass on the support wherever I can!!
kerri
-
- August 10, 2015 at 1:31 am
I've had pretty much every bone in my thoracic and lumbar spine radiated at least once. The doc called it high dose radiation. Usually it was 30 gray in 5 fractions. A fraction is a treatment. What radiation did your son get? For me I never had such a problem. Actually the spot they radiated usually felt the same or better. Granted the affects of the radiation sometimes made me feel crummy. So how fast he recovers depends if he had an even higher dose and or larger number of treatments I would think. If he had the same high dose as me I would think he wouldn't have such a pain. If he had a higher dose then I would assume that is what is causing the pain. Also depending on how good the radiation doc and team is they could have damaged some nerves in that area causing the pain. Very easy with external beam radiation. Not sure how long radiation caused nerve damage would take to heal if that is what it is. When I had my neck zapped last winter and the hair fell out you could see a very precise line so I know they zapped me exactly where they intended each time. But the spine is a tricky area to radiate. I would have preferred proton beam radiation because it is super precise and dissipates from the target area very quick so surrounding tissue doesn't get as much exposure. But the docs wouldn't do it probably because it is very expensive for the insurance. But it is intended for radiating the spine especially if the central nervous system is involved. My cousins son had high dose radiation for his colo rectal cancer and I remember him saying it still hurt a year later but he didn't know how much he received but it was one treatment.
Artie
-
- August 10, 2015 at 1:31 am
I've had pretty much every bone in my thoracic and lumbar spine radiated at least once. The doc called it high dose radiation. Usually it was 30 gray in 5 fractions. A fraction is a treatment. What radiation did your son get? For me I never had such a problem. Actually the spot they radiated usually felt the same or better. Granted the affects of the radiation sometimes made me feel crummy. So how fast he recovers depends if he had an even higher dose and or larger number of treatments I would think. If he had the same high dose as me I would think he wouldn't have such a pain. If he had a higher dose then I would assume that is what is causing the pain. Also depending on how good the radiation doc and team is they could have damaged some nerves in that area causing the pain. Very easy with external beam radiation. Not sure how long radiation caused nerve damage would take to heal if that is what it is. When I had my neck zapped last winter and the hair fell out you could see a very precise line so I know they zapped me exactly where they intended each time. But the spine is a tricky area to radiate. I would have preferred proton beam radiation because it is super precise and dissipates from the target area very quick so surrounding tissue doesn't get as much exposure. But the docs wouldn't do it probably because it is very expensive for the insurance. But it is intended for radiating the spine especially if the central nervous system is involved. My cousins son had high dose radiation for his colo rectal cancer and I remember him saying it still hurt a year later but he didn't know how much he received but it was one treatment.
Artie
-
- August 9, 2015 at 11:35 pm
Only since radiation on TH he can't move well. He has a lot of pain and says bending is terribly painful. He does have other spine tumors up higher, in fact one is larger I believe! I need to check the scan report. I find the reports hard to read! He had lower back MRI only and T10 was completely tumor w the hard exterior still holding. So he has no structural damage yet to his back that we can tell. How fast does this recover and how fast will he feel better from this high dose of radiation? He has a trip planned w friends in 3 days. 11 hour drive to see his favorite band. He planned it months ago. I worried he wouldn't make it to the concert date…thank you keytuda!
Love to all,
kerri
-
- August 9, 2015 at 11:35 pm
Only since radiation on TH he can't move well. He has a lot of pain and says bending is terribly painful. He does have other spine tumors up higher, in fact one is larger I believe! I need to check the scan report. I find the reports hard to read! He had lower back MRI only and T10 was completely tumor w the hard exterior still holding. So he has no structural damage yet to his back that we can tell. How fast does this recover and how fast will he feel better from this high dose of radiation? He has a trip planned w friends in 3 days. 11 hour drive to see his favorite band. He planned it months ago. I worried he wouldn't make it to the concert date…thank you keytuda!
Love to all,
kerri
-
Tagged: cutaneous melanoma
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