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MELK.
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- July 19, 2016 at 2:34 pm
Justa quick update and a few questions. I had an MRI on pelvic area to see if what showed on May Pet Scan was indeed Bone Mets. Confirmed so I had bone scan yesterday to see if it is anywhere else in bones. I have an appt with Radiation Oncologist Thursday in the hopes we can add some radiation in with the ipi I'm doing before I head back to Houston in early September for Adoptive Cell Theraphy. Needless to say my anxiety has gone up another level. I keep wondering if my shoulder has it, my right elbow, my ribcage…areas that I now question. I always thought that shoulder and elbow were from weight lifting…hmmmm. Couple of questions that Itried finding but didn't find anything concrete…
1) Can or will they radiate multiple bone leisons?
2) Is there anywhere they can't radiate…i.e. ribcage if in fact it does show up there.
3) Does immunotheraphy work on bone mets?
I need to start getting some more W's in the win column here. The waiting and anxiety is overwhelming. Like all of us, I have a lot to fight for so I'll answer the bell. Appreciate everyone's love & support here.
Josh
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- July 19, 2016 at 3:24 pm
Josh, I had bone met in lower jaw area and a combination of low dose chemo followed by immunotherapies took care of it. However, soft tissue tumor grew by a third.(size of golf ball) After 8 infusions of Keytruda golf ball is almost gone. Hoping scans next week are clear. Through six years of this i have not had radiation
Good luck and hang in there,
Paul
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- July 19, 2016 at 3:24 pm
Josh, I had bone met in lower jaw area and a combination of low dose chemo followed by immunotherapies took care of it. However, soft tissue tumor grew by a third.(size of golf ball) After 8 infusions of Keytruda golf ball is almost gone. Hoping scans next week are clear. Through six years of this i have not had radiation
Good luck and hang in there,
Paul
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- July 19, 2016 at 3:24 pm
Josh, I had bone met in lower jaw area and a combination of low dose chemo followed by immunotherapies took care of it. However, soft tissue tumor grew by a third.(size of golf ball) After 8 infusions of Keytruda golf ball is almost gone. Hoping scans next week are clear. Through six years of this i have not had radiation
Good luck and hang in there,
Paul
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- July 19, 2016 at 4:52 pm
Hi Josh,
The battle continues with this relentless beast. I think getting a shot of radiation, where it is safe to administer is something that may complement your immunotherapy and it is simply a good idea. We must attack on all fronts, and these combination therapies seem most effective. Just be sure anything you do now, won't disqualify you for the ACT. One thing I have learned recently as I explore my options to radiate my massive spleen tumor is that digestive tract tissues are very sensitive to radiation and effectively off-limits. So your ribcage, or anywhere else where radiation may penetrate and effect digestive tissues may be risky. I imagine there are other areas as well. A radiation oncologist should have good suggestions. As always, we are rooting for you to achieve NED.
Gary
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- July 19, 2016 at 4:52 pm
Hi Josh,
The battle continues with this relentless beast. I think getting a shot of radiation, where it is safe to administer is something that may complement your immunotherapy and it is simply a good idea. We must attack on all fronts, and these combination therapies seem most effective. Just be sure anything you do now, won't disqualify you for the ACT. One thing I have learned recently as I explore my options to radiate my massive spleen tumor is that digestive tract tissues are very sensitive to radiation and effectively off-limits. So your ribcage, or anywhere else where radiation may penetrate and effect digestive tissues may be risky. I imagine there are other areas as well. A radiation oncologist should have good suggestions. As always, we are rooting for you to achieve NED.
Gary
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- July 19, 2016 at 4:52 pm
Hi Josh,
The battle continues with this relentless beast. I think getting a shot of radiation, where it is safe to administer is something that may complement your immunotherapy and it is simply a good idea. We must attack on all fronts, and these combination therapies seem most effective. Just be sure anything you do now, won't disqualify you for the ACT. One thing I have learned recently as I explore my options to radiate my massive spleen tumor is that digestive tract tissues are very sensitive to radiation and effectively off-limits. So your ribcage, or anywhere else where radiation may penetrate and effect digestive tissues may be risky. I imagine there are other areas as well. A radiation oncologist should have good suggestions. As always, we are rooting for you to achieve NED.
Gary
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- July 19, 2016 at 7:41 pm
sounds like you're having about as much fun as I am. I'm sorry.
I don't really know the answers to your questions- I had a T10 tumor in 2013, when I was on IL-2 that was really painful. The IL-2 seemed to take care of it, I never had any radiation. That tumor left me with a collapsed vertebrae, and there was also an L5 tumor that was/is visible on scans, but has never caused any problems (my current and ongoing pain is muscular).
I hope things go well for you.
-Eva
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- July 19, 2016 at 7:41 pm
sounds like you're having about as much fun as I am. I'm sorry.
I don't really know the answers to your questions- I had a T10 tumor in 2013, when I was on IL-2 that was really painful. The IL-2 seemed to take care of it, I never had any radiation. That tumor left me with a collapsed vertebrae, and there was also an L5 tumor that was/is visible on scans, but has never caused any problems (my current and ongoing pain is muscular).
I hope things go well for you.
-Eva
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- July 19, 2016 at 7:41 pm
sounds like you're having about as much fun as I am. I'm sorry.
I don't really know the answers to your questions- I had a T10 tumor in 2013, when I was on IL-2 that was really painful. The IL-2 seemed to take care of it, I never had any radiation. That tumor left me with a collapsed vertebrae, and there was also an L5 tumor that was/is visible on scans, but has never caused any problems (my current and ongoing pain is muscular).
I hope things go well for you.
-Eva
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- July 25, 2016 at 3:31 pm
Hi Eve, I wanted to ask you what a collapsed vertebrae loks like. Are you in a wheelchair?
I have a tumor at at C6 and had radiation to it, but I am very worried about it because of the implications of where it is. I realise tumors will weaken the vertebrae, but its hard to find out how likely they can cause collapse and if that means the dpinal column being damaged.
Thank you and all the best to you.
Mel -
- July 25, 2016 at 3:31 pm
Hi Eve, I wanted to ask you what a collapsed vertebrae loks like. Are you in a wheelchair?
I have a tumor at at C6 and had radiation to it, but I am very worried about it because of the implications of where it is. I realise tumors will weaken the vertebrae, but its hard to find out how likely they can cause collapse and if that means the dpinal column being damaged.
Thank you and all the best to you.
Mel -
- July 25, 2016 at 3:31 pm
Hi Eve, I wanted to ask you what a collapsed vertebrae loks like. Are you in a wheelchair?
I have a tumor at at C6 and had radiation to it, but I am very worried about it because of the implications of where it is. I realise tumors will weaken the vertebrae, but its hard to find out how likely they can cause collapse and if that means the dpinal column being damaged.
Thank you and all the best to you.
Mel
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- July 20, 2016 at 7:59 am
Yes they can radiate multiple bones. Yes they can radiate ribs thanks to the new computer speeds and targeting, you can even radiate your aorta while your heart is beating. I forgot who it was that had that done, and it worked! I believe they were treated in FL as a radiation clinical trial for the new technology.
If they haven't started you on osteoporosis drugs ex. Forteo or something like that, ask for it. Bone mets are notorious for causing bone fractures and the osteoporosis drugs can help to strengthen weakend bone. Very common for people with bone mets to take those drugs.
If you have a vertebral collapse, there are several surgical procedures to stabilize and treat those fractures as well. Best if nothing breaks in the first place.
Melanoma picked one heck of a fight when it picked on you. Keep it up, one round at a time. You have the better endurance and tenacity.
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- July 20, 2016 at 7:59 am
Yes they can radiate multiple bones. Yes they can radiate ribs thanks to the new computer speeds and targeting, you can even radiate your aorta while your heart is beating. I forgot who it was that had that done, and it worked! I believe they were treated in FL as a radiation clinical trial for the new technology.
If they haven't started you on osteoporosis drugs ex. Forteo or something like that, ask for it. Bone mets are notorious for causing bone fractures and the osteoporosis drugs can help to strengthen weakend bone. Very common for people with bone mets to take those drugs.
If you have a vertebral collapse, there are several surgical procedures to stabilize and treat those fractures as well. Best if nothing breaks in the first place.
Melanoma picked one heck of a fight when it picked on you. Keep it up, one round at a time. You have the better endurance and tenacity.
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- July 20, 2016 at 7:59 am
Yes they can radiate multiple bones. Yes they can radiate ribs thanks to the new computer speeds and targeting, you can even radiate your aorta while your heart is beating. I forgot who it was that had that done, and it worked! I believe they were treated in FL as a radiation clinical trial for the new technology.
If they haven't started you on osteoporosis drugs ex. Forteo or something like that, ask for it. Bone mets are notorious for causing bone fractures and the osteoporosis drugs can help to strengthen weakend bone. Very common for people with bone mets to take those drugs.
If you have a vertebral collapse, there are several surgical procedures to stabilize and treat those fractures as well. Best if nothing breaks in the first place.
Melanoma picked one heck of a fight when it picked on you. Keep it up, one round at a time. You have the better endurance and tenacity.
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- July 21, 2016 at 12:54 am
Hi Josh,
I've been off the board for a while because I needed to be (especially after Artie), so I just checked for the first time today in 6 months. I've always followed your story since it's so similar to my husband's. We were just at MD Anderson on Floor 9 yesterday for his 6 month scans.
I'm really sorry to hear what you are going through and I'll be sending up every positive vibe and prayer that I can to the big one.
If you need anything here in Houston, please don't hesitate to ask. We live in south Houston but my husband works at Baylor College of Medicine/Genetics lab and I'm at University of Houston which are both right by MD Anderson. I know several of the medical librarians at MD Anderson in both the research library and the patient information library if you need anything. If you need any group support, we'll gladly meet up with you in September.
We have an 8 year old daughter and we understand how hard it is to go through at all and especially as parent of young ones.
I think you are covered on the medical advice but tomorrow I'll check the literature regarding bone mets and immunotherapy and post what I find. Along with the Adoptive T Cell stuff.
Many many thoughts your way,
Jackie
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- July 21, 2016 at 12:54 am
Hi Josh,
I've been off the board for a while because I needed to be (especially after Artie), so I just checked for the first time today in 6 months. I've always followed your story since it's so similar to my husband's. We were just at MD Anderson on Floor 9 yesterday for his 6 month scans.
I'm really sorry to hear what you are going through and I'll be sending up every positive vibe and prayer that I can to the big one.
If you need anything here in Houston, please don't hesitate to ask. We live in south Houston but my husband works at Baylor College of Medicine/Genetics lab and I'm at University of Houston which are both right by MD Anderson. I know several of the medical librarians at MD Anderson in both the research library and the patient information library if you need anything. If you need any group support, we'll gladly meet up with you in September.
We have an 8 year old daughter and we understand how hard it is to go through at all and especially as parent of young ones.
I think you are covered on the medical advice but tomorrow I'll check the literature regarding bone mets and immunotherapy and post what I find. Along with the Adoptive T Cell stuff.
Many many thoughts your way,
Jackie
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- July 21, 2016 at 12:54 am
Hi Josh,
I've been off the board for a while because I needed to be (especially after Artie), so I just checked for the first time today in 6 months. I've always followed your story since it's so similar to my husband's. We were just at MD Anderson on Floor 9 yesterday for his 6 month scans.
I'm really sorry to hear what you are going through and I'll be sending up every positive vibe and prayer that I can to the big one.
If you need anything here in Houston, please don't hesitate to ask. We live in south Houston but my husband works at Baylor College of Medicine/Genetics lab and I'm at University of Houston which are both right by MD Anderson. I know several of the medical librarians at MD Anderson in both the research library and the patient information library if you need anything. If you need any group support, we'll gladly meet up with you in September.
We have an 8 year old daughter and we understand how hard it is to go through at all and especially as parent of young ones.
I think you are covered on the medical advice but tomorrow I'll check the literature regarding bone mets and immunotherapy and post what I find. Along with the Adoptive T Cell stuff.
Many many thoughts your way,
Jackie
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- July 21, 2016 at 2:29 am
Hi Jackie-
I understand about staying away. I did the same after I heard about Artie…that one hurt and too many people we've lost. I would just follow Celeste's (Bubbles) blog. I'm so sick of seeing so many people suffer. It's great to hear the positive stories and gives hope but too much suffering. We need to figure out quickly how to make people respond or why they don;t and have the solution for them…
You're so kind for researching and offering to help out. I'd definitely like to meet you both when I'm there…good to put a name to a face. I'll be down there for about a month and pray that this Adoptive Cell Therapy is as promosing as they think it will be. This Dr. Yee is supposed to be good…part of the S2UC Immunotherapy Dream Team with Jim Allison and a few others… Be interested to see what you find. I'll keep in touch…thank you Jackie….prayers and well wishes to you and family. especially your husband!!!
Josh
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- July 21, 2016 at 2:29 am
Hi Jackie-
I understand about staying away. I did the same after I heard about Artie…that one hurt and too many people we've lost. I would just follow Celeste's (Bubbles) blog. I'm so sick of seeing so many people suffer. It's great to hear the positive stories and gives hope but too much suffering. We need to figure out quickly how to make people respond or why they don;t and have the solution for them…
You're so kind for researching and offering to help out. I'd definitely like to meet you both when I'm there…good to put a name to a face. I'll be down there for about a month and pray that this Adoptive Cell Therapy is as promosing as they think it will be. This Dr. Yee is supposed to be good…part of the S2UC Immunotherapy Dream Team with Jim Allison and a few others… Be interested to see what you find. I'll keep in touch…thank you Jackie….prayers and well wishes to you and family. especially your husband!!!
Josh
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- July 21, 2016 at 2:29 am
Hi Jackie-
I understand about staying away. I did the same after I heard about Artie…that one hurt and too many people we've lost. I would just follow Celeste's (Bubbles) blog. I'm so sick of seeing so many people suffer. It's great to hear the positive stories and gives hope but too much suffering. We need to figure out quickly how to make people respond or why they don;t and have the solution for them…
You're so kind for researching and offering to help out. I'd definitely like to meet you both when I'm there…good to put a name to a face. I'll be down there for about a month and pray that this Adoptive Cell Therapy is as promosing as they think it will be. This Dr. Yee is supposed to be good…part of the S2UC Immunotherapy Dream Team with Jim Allison and a few others… Be interested to see what you find. I'll keep in touch…thank you Jackie….prayers and well wishes to you and family. especially your husband!!!
Josh
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- July 21, 2016 at 5:50 pm
Hi Josh,
I had a hard time finding anything specific to metastatic melanoma, immunotherapy AND bone mets (however, there were several articles dealing with immunotherapy efficacy with bone mets in metastatic prostate cancer patients).
However, I did find a few great articles on T Cell Transfer Immunotherapy and durable complete responses for patients that have already been heavily treated. The sample was 93 patients with measurable metastatic melanoma that had undergone previous therapies. I'll give you the citations below, but feel free to email me ([email protected]) if you need the PDF since I'm not sure these are free full text on Pubmed or not. I wish this site let us attach documents, but I don't think we can.
Here is a synopsis from the first article:
This article shows that the adoptive transfer of tumor-infiltrating lymphocytes plus interleukin-2 (IL-2) following a preparative lymphodepleting regimen can lead to durable complete regressions in up to 40% of patients with metastatic melanoma. Of 20 patients, who experienced complete regressions, 19 are ongoing at more than 3 to 7 years. Eighty-six percent of patients had visceral metastases and 95% had been previously recurred after other systemic treatments. Thus, the application of this experimental approach seems capable of providing durable remissions and possible cures in patients with metastatic melanoma.
Here are the links to the article, they should have free full text available. Also, these articles come from Clinical Cancer Research Journal which is peer-reviewed and focuses on findings from clinical trials from new treatments, etc.
Just beware, these articles are obviously high on advanced medical terminology and statistical terminology, so if you aren't into that, don't feel like you have to read. The data can be scary if you aren't used to it and don't read it if it's overwhelming to you! But the Adoptive T Cell is showing good stuff!
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- July 21, 2016 at 5:50 pm
Hi Josh,
I had a hard time finding anything specific to metastatic melanoma, immunotherapy AND bone mets (however, there were several articles dealing with immunotherapy efficacy with bone mets in metastatic prostate cancer patients).
However, I did find a few great articles on T Cell Transfer Immunotherapy and durable complete responses for patients that have already been heavily treated. The sample was 93 patients with measurable metastatic melanoma that had undergone previous therapies. I'll give you the citations below, but feel free to email me ([email protected]) if you need the PDF since I'm not sure these are free full text on Pubmed or not. I wish this site let us attach documents, but I don't think we can.
Here is a synopsis from the first article:
This article shows that the adoptive transfer of tumor-infiltrating lymphocytes plus interleukin-2 (IL-2) following a preparative lymphodepleting regimen can lead to durable complete regressions in up to 40% of patients with metastatic melanoma. Of 20 patients, who experienced complete regressions, 19 are ongoing at more than 3 to 7 years. Eighty-six percent of patients had visceral metastases and 95% had been previously recurred after other systemic treatments. Thus, the application of this experimental approach seems capable of providing durable remissions and possible cures in patients with metastatic melanoma.
Here are the links to the article, they should have free full text available. Also, these articles come from Clinical Cancer Research Journal which is peer-reviewed and focuses on findings from clinical trials from new treatments, etc.
Just beware, these articles are obviously high on advanced medical terminology and statistical terminology, so if you aren't into that, don't feel like you have to read. The data can be scary if you aren't used to it and don't read it if it's overwhelming to you! But the Adoptive T Cell is showing good stuff!
-
- July 21, 2016 at 5:50 pm
Hi Josh,
I had a hard time finding anything specific to metastatic melanoma, immunotherapy AND bone mets (however, there were several articles dealing with immunotherapy efficacy with bone mets in metastatic prostate cancer patients).
However, I did find a few great articles on T Cell Transfer Immunotherapy and durable complete responses for patients that have already been heavily treated. The sample was 93 patients with measurable metastatic melanoma that had undergone previous therapies. I'll give you the citations below, but feel free to email me ([email protected]) if you need the PDF since I'm not sure these are free full text on Pubmed or not. I wish this site let us attach documents, but I don't think we can.
Here is a synopsis from the first article:
This article shows that the adoptive transfer of tumor-infiltrating lymphocytes plus interleukin-2 (IL-2) following a preparative lymphodepleting regimen can lead to durable complete regressions in up to 40% of patients with metastatic melanoma. Of 20 patients, who experienced complete regressions, 19 are ongoing at more than 3 to 7 years. Eighty-six percent of patients had visceral metastases and 95% had been previously recurred after other systemic treatments. Thus, the application of this experimental approach seems capable of providing durable remissions and possible cures in patients with metastatic melanoma.
Here are the links to the article, they should have free full text available. Also, these articles come from Clinical Cancer Research Journal which is peer-reviewed and focuses on findings from clinical trials from new treatments, etc.
Just beware, these articles are obviously high on advanced medical terminology and statistical terminology, so if you aren't into that, don't feel like you have to read. The data can be scary if you aren't used to it and don't read it if it's overwhelming to you! But the Adoptive T Cell is showing good stuff!
-
- July 21, 2016 at 5:53 pm
Here are the links (but not hyperlinked because it caught in spam filter)
http://www.ncbi.nlm.nih.gov/pubmed/21498393
http://www.ncbi.nlm.nih.gov/pubmed/23032743
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- July 21, 2016 at 5:53 pm
Here are the links (but not hyperlinked because it caught in spam filter)
http://www.ncbi.nlm.nih.gov/pubmed/21498393
http://www.ncbi.nlm.nih.gov/pubmed/23032743
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- July 21, 2016 at 5:53 pm
Here are the links (but not hyperlinked because it caught in spam filter)
http://www.ncbi.nlm.nih.gov/pubmed/21498393
http://www.ncbi.nlm.nih.gov/pubmed/23032743
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- July 22, 2016 at 12:14 pm
Josh,
I'm glad others are giving you great advice! I just wanted to tell you to hang in there. I will continue to pray for you and your family. You are in an excellent melanoma center!!!
Maureen
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- July 22, 2016 at 12:14 pm
Josh,
I'm glad others are giving you great advice! I just wanted to tell you to hang in there. I will continue to pray for you and your family. You are in an excellent melanoma center!!!
Maureen
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- July 22, 2016 at 12:14 pm
Josh,
I'm glad others are giving you great advice! I just wanted to tell you to hang in there. I will continue to pray for you and your family. You are in an excellent melanoma center!!!
Maureen
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- July 22, 2016 at 1:15 pm
Thanks Jackie…I did find the articles. A lot of this does seem promising. I'm praying that this treatment is the right thinkg for me and that the advances they can make with it will benefit many in the years to come. They are addding additional drugs (ipi, PD-1) after infusion of cells to "boost" and "sustain" systemic responses. IL-2 is also used but I think that's always been the case. I appreciate you digging into this…thank you so much!!!!
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- July 22, 2016 at 2:14 pm
Hi Josh, I thought you might like to take a look at this article!!! Ed http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4744430/
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- July 22, 2016 at 2:14 pm
Hi Josh, I thought you might like to take a look at this article!!! Ed http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4744430/
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- July 22, 2016 at 2:14 pm
Hi Josh, I thought you might like to take a look at this article!!! Ed http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4744430/
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- July 22, 2016 at 1:15 pm
Thanks Jackie…I did find the articles. A lot of this does seem promising. I'm praying that this treatment is the right thinkg for me and that the advances they can make with it will benefit many in the years to come. They are addding additional drugs (ipi, PD-1) after infusion of cells to "boost" and "sustain" systemic responses. IL-2 is also used but I think that's always been the case. I appreciate you digging into this…thank you so much!!!!
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- July 22, 2016 at 1:15 pm
Thanks Jackie…I did find the articles. A lot of this does seem promising. I'm praying that this treatment is the right thinkg for me and that the advances they can make with it will benefit many in the years to come. They are addding additional drugs (ipi, PD-1) after infusion of cells to "boost" and "sustain" systemic responses. IL-2 is also used but I think that's always been the case. I appreciate you digging into this…thank you so much!!!!
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