› Forums › General Melanoma Community › Cancer sucks
- This topic has 63 replies, 9 voices, and was last updated 8 years, 10 months ago by
Polymath.
- Post
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- November 8, 2016 at 7:07 pm
I normally keep my cool regarding my battle, but last night I must say the demons were running amok. PET/CT results appear to show my 12-month run on ipi-nivo (with radiation), which provided some improvement and/or stability has come to an end. My main problem is the splenetic masses. A pair of orange sized tumors that have more or less merged into a very large, cantaloupe sized mass engulfing my spleen. I knew things were not going well as I began to notice my ribcage being being pushed outward, and the invasion into the stomach area which has caused various appetite and discomfort issues. OK, that's the venting part. Now it's decision time. I have looked into radiation again and determined the potential collateral damage to GI tract is very risky, but still under consideration. Surgery to remove entire spleen is an obvious choice but both these treatments carry risk and potential long-term side-effects. Ideally, immunotherapy would defeat this monster, and my doc has me pegged for a trial of IDO inhibitor combined with anti PD-L1 which sounds really good, but does not begin for several months. But time is running out and the spleen issue is causing stresses on other systems that could cause massive internal bleeding and risk death. So, anyone who had spleen removed? Melanoma in spleen is unusual but somebody must have dealt with it. I'd love to hear from you. Radiation? Or any luck with drug therapies defeating unusually large solid tumors? Please chime in. Best to you all in the battle.
Gary
- Replies
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- November 8, 2016 at 7:22 pm
Gary, sorry to hear about your latest challenge. I agree with your instinct not to wait for trials that haven't started, etc. I don't recall your BRAF status. If BRAF positive, can you try a second run? Separately, as you've seen with Josh and Brian, I'd think about traveling to MDA (or Sloan). They just have more trials than elsewhere.
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- November 8, 2016 at 7:22 pm
Gary, sorry to hear about your latest challenge. I agree with your instinct not to wait for trials that haven't started, etc. I don't recall your BRAF status. If BRAF positive, can you try a second run? Separately, as you've seen with Josh and Brian, I'd think about traveling to MDA (or Sloan). They just have more trials than elsewhere.
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- November 8, 2016 at 10:42 pm
Thanks Mat,
Good advice. BRAF+ and Zelboraf did kick my mets to the curb once before, but also kicked my butt with outrageous side-effects. It was brutal, but yes, I have thought about this and will consult with doc. TAF/MEK after Zel did little more than keep me stable for a few months. I'm already a 5-hour flight to West Coast where I go to UCSF for specialist. Traveling even further would be an added burden but its another idea worth considering. Thanks and hope your status remains stable, or better.
Gary
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- November 8, 2016 at 10:42 pm
Thanks Mat,
Good advice. BRAF+ and Zelboraf did kick my mets to the curb once before, but also kicked my butt with outrageous side-effects. It was brutal, but yes, I have thought about this and will consult with doc. TAF/MEK after Zel did little more than keep me stable for a few months. I'm already a 5-hour flight to West Coast where I go to UCSF for specialist. Traveling even further would be an added burden but its another idea worth considering. Thanks and hope your status remains stable, or better.
Gary
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- November 9, 2016 at 2:01 pm
I had my spleen removed 30 years ago as part of the treatment for Hodgkin's disease, with no negative impact. An additional pneumonia vaccine as a precaution was recommended.
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- November 9, 2016 at 2:01 pm
I had my spleen removed 30 years ago as part of the treatment for Hodgkin's disease, with no negative impact. An additional pneumonia vaccine as a precaution was recommended.
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- November 9, 2016 at 2:01 pm
I had my spleen removed 30 years ago as part of the treatment for Hodgkin's disease, with no negative impact. An additional pneumonia vaccine as a precaution was recommended.
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- November 8, 2016 at 10:42 pm
Thanks Mat,
Good advice. BRAF+ and Zelboraf did kick my mets to the curb once before, but also kicked my butt with outrageous side-effects. It was brutal, but yes, I have thought about this and will consult with doc. TAF/MEK after Zel did little more than keep me stable for a few months. I'm already a 5-hour flight to West Coast where I go to UCSF for specialist. Traveling even further would be an added burden but its another idea worth considering. Thanks and hope your status remains stable, or better.
Gary
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- November 8, 2016 at 7:22 pm
Gary, sorry to hear about your latest challenge. I agree with your instinct not to wait for trials that haven't started, etc. I don't recall your BRAF status. If BRAF positive, can you try a second run? Separately, as you've seen with Josh and Brian, I'd think about traveling to MDA (or Sloan). They just have more trials than elsewhere.
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- November 8, 2016 at 11:04 pm
I agree, cancer SUCKS!
I wish this was a post talking about shrinkage of that big fruit you've got in there, ugh! Sending you lots of positive thoughts and hugs across the Pacific! Hoping a good plan gets in place soon for you so you can get that melon taken care of for good!
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- November 8, 2016 at 11:04 pm
I agree, cancer SUCKS!
I wish this was a post talking about shrinkage of that big fruit you've got in there, ugh! Sending you lots of positive thoughts and hugs across the Pacific! Hoping a good plan gets in place soon for you so you can get that melon taken care of for good!
-
- November 8, 2016 at 11:04 pm
I agree, cancer SUCKS!
I wish this was a post talking about shrinkage of that big fruit you've got in there, ugh! Sending you lots of positive thoughts and hugs across the Pacific! Hoping a good plan gets in place soon for you so you can get that melon taken care of for good!
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- November 9, 2016 at 12:28 am
Hey Gary,
So very sorry!!! But, I have always been an advocate of ….get it out'a there!!! And…having taken care of many kids with functional asplenia (due to sickle cell and other disease processes) or absolute asplenia…because of trauma, etc….this is something that can be done! Well!!! You'll need certain vaccines and precautions, but one can live a happy normal life without a spleen! Not easy…but still. I don't have any data on melanoma in the spleen in particular. So….that said….I'm going to give you some links I have to some of the latest and greatest options. Don't know which one really fits the bill for you and is readily available…but they are certainly things I would talk to my doc about. I can only post 2 links per post….but, here you go:
enoblitzumab: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/new-trial-recruiting-pembro-plus-mga271.html
hold on…..
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- November 9, 2016 at 12:28 am
Hey Gary,
So very sorry!!! But, I have always been an advocate of ….get it out'a there!!! And…having taken care of many kids with functional asplenia (due to sickle cell and other disease processes) or absolute asplenia…because of trauma, etc….this is something that can be done! Well!!! You'll need certain vaccines and precautions, but one can live a happy normal life without a spleen! Not easy…but still. I don't have any data on melanoma in the spleen in particular. So….that said….I'm going to give you some links I have to some of the latest and greatest options. Don't know which one really fits the bill for you and is readily available…but they are certainly things I would talk to my doc about. I can only post 2 links per post….but, here you go:
enoblitzumab: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/new-trial-recruiting-pembro-plus-mga271.html
hold on…..
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- November 9, 2016 at 12:32 am
and…..
IDO inhibitors and JAK inhibitors have been demonstrating some success: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html
anti-KIR has been showin benefit as well (this is old…but I think Kyle Z is still doing this….though I may be wrong): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/anti-kir-lirilumab-with-nivo-new-trial.html
…and….
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- November 9, 2016 at 12:32 am
and…..
IDO inhibitors and JAK inhibitors have been demonstrating some success: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html
anti-KIR has been showin benefit as well (this is old…but I think Kyle Z is still doing this….though I may be wrong): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/anti-kir-lirilumab-with-nivo-new-trial.html
…and….
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- November 9, 2016 at 12:36 am
….and finally….just put this up – anti-TYRP1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/anti-tyrp1-monclonal-antibody-next-good.html
Sooo….tip of the arrow is a tough place to be. Not sure how all of these are going to pan out in the end. Not sure how available any of these are. Can't find the next study up yet with anti-TYRP1, though I am sure there will be one.
If I were interested in any of these treatments I would talk to my doc and have him/her call one of the study authors (or call them myself) if need be….to see what is supposed to happen next.
Wish I had something better to offer. Hang in there. love, c
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- November 9, 2016 at 12:36 am
….and finally….just put this up – anti-TYRP1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/anti-tyrp1-monclonal-antibody-next-good.html
Sooo….tip of the arrow is a tough place to be. Not sure how all of these are going to pan out in the end. Not sure how available any of these are. Can't find the next study up yet with anti-TYRP1, though I am sure there will be one.
If I were interested in any of these treatments I would talk to my doc and have him/her call one of the study authors (or call them myself) if need be….to see what is supposed to happen next.
Wish I had something better to offer. Hang in there. love, c
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- November 9, 2016 at 7:42 pm
Thanks Celeste for taking the time to post advice and links. It's tough for a lay person to understand so much of these, but I'll do my best. As mentioned, with my geographical challenges, venturing beyond the West Coast gets more and more troublesome and expensive, yet I understand the stakes, and will do what I need to do. My specialist, has recommended a study combining Epacadostat and PD-L1 checkpoint inhibitor Durvalumab. Its sounds like a great combo, but I don't know if my tumor profile is PD-L1 specific. I'd be happy to hear your opinion on this. In the meantime the good ole advice of "when in doubt, cut it out" does seem most logical. I meet with a surgeon next week to help me understand entire procedure.
Aloha, Gary
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- November 9, 2016 at 7:42 pm
Thanks Celeste for taking the time to post advice and links. It's tough for a lay person to understand so much of these, but I'll do my best. As mentioned, with my geographical challenges, venturing beyond the West Coast gets more and more troublesome and expensive, yet I understand the stakes, and will do what I need to do. My specialist, has recommended a study combining Epacadostat and PD-L1 checkpoint inhibitor Durvalumab. Its sounds like a great combo, but I don't know if my tumor profile is PD-L1 specific. I'd be happy to hear your opinion on this. In the meantime the good ole advice of "when in doubt, cut it out" does seem most logical. I meet with a surgeon next week to help me understand entire procedure.
Aloha, Gary
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- November 9, 2016 at 7:59 pm
No problem….just trying to throw all my ideas in your direction….in hopes that you can find one that appeals, is available, and workable for you!! An epadadostat (an IDO inhibitor) trial is included in the link I put up above that also talks about the JAK inhibitors. But here is even better intel: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
The fourth combo Weber talked about in this post was epacadostat and pembro where 61 patients with various tumors were treated, 18 melanoma patients. The addition of epadacostat did not increase side effects, those that occurred were typical for anti-PD1. In the melanoma patients there was a 56% overall response rate. Weber found these results "very promising and comparable to ipi/nivo in regard to response rate but with much milder side effects".
So….I think the epacadostat/PD-L1 option your doc presented you with may well be a very good combo!!!
Hang in there! C
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- November 9, 2016 at 7:59 pm
No problem….just trying to throw all my ideas in your direction….in hopes that you can find one that appeals, is available, and workable for you!! An epadadostat (an IDO inhibitor) trial is included in the link I put up above that also talks about the JAK inhibitors. But here is even better intel: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
The fourth combo Weber talked about in this post was epacadostat and pembro where 61 patients with various tumors were treated, 18 melanoma patients. The addition of epadacostat did not increase side effects, those that occurred were typical for anti-PD1. In the melanoma patients there was a 56% overall response rate. Weber found these results "very promising and comparable to ipi/nivo in regard to response rate but with much milder side effects".
So….I think the epacadostat/PD-L1 option your doc presented you with may well be a very good combo!!!
Hang in there! C
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- November 9, 2016 at 7:59 pm
No problem….just trying to throw all my ideas in your direction….in hopes that you can find one that appeals, is available, and workable for you!! An epadadostat (an IDO inhibitor) trial is included in the link I put up above that also talks about the JAK inhibitors. But here is even better intel: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/immunology-updatewebinar-for-melanoma.html
The fourth combo Weber talked about in this post was epacadostat and pembro where 61 patients with various tumors were treated, 18 melanoma patients. The addition of epadacostat did not increase side effects, those that occurred were typical for anti-PD1. In the melanoma patients there was a 56% overall response rate. Weber found these results "very promising and comparable to ipi/nivo in regard to response rate but with much milder side effects".
So….I think the epacadostat/PD-L1 option your doc presented you with may well be a very good combo!!!
Hang in there! C
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- November 9, 2016 at 8:46 pm
Hi Gary, just to add to what Celeste has given you about Pd-L1 staining. I know the presenters and material can get pretty detailed and complicated. I have two video that explains the present understanding of using Pd-L1 as a biomarker. In the first video the presenter starts getting into good stuff at 3.00min mark and she does a good summary at the end!!! https://www.youtube.com/watch?v=5y1nnTsFBoE In the second video the whole thing is good but at the 49.00min mark Dr. Charles Drake talks about using Pd-L1 biomarkers and what they are finding in different cancers. He is talking to a group of reporters so he takes his time and explains things clearly. https://www.youtube.com/watch?v=5y1nnTsFBoE Best Wishes!!!Ed
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- November 9, 2016 at 8:46 pm
Hi Gary, just to add to what Celeste has given you about Pd-L1 staining. I know the presenters and material can get pretty detailed and complicated. I have two video that explains the present understanding of using Pd-L1 as a biomarker. In the first video the presenter starts getting into good stuff at 3.00min mark and she does a good summary at the end!!! https://www.youtube.com/watch?v=5y1nnTsFBoE In the second video the whole thing is good but at the 49.00min mark Dr. Charles Drake talks about using Pd-L1 biomarkers and what they are finding in different cancers. He is talking to a group of reporters so he takes his time and explains things clearly. https://www.youtube.com/watch?v=5y1nnTsFBoE Best Wishes!!!Ed
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- November 9, 2016 at 8:46 pm
Hi Gary, just to add to what Celeste has given you about Pd-L1 staining. I know the presenters and material can get pretty detailed and complicated. I have two video that explains the present understanding of using Pd-L1 as a biomarker. In the first video the presenter starts getting into good stuff at 3.00min mark and she does a good summary at the end!!! https://www.youtube.com/watch?v=5y1nnTsFBoE In the second video the whole thing is good but at the 49.00min mark Dr. Charles Drake talks about using Pd-L1 biomarkers and what they are finding in different cancers. He is talking to a group of reporters so he takes his time and explains things clearly. https://www.youtube.com/watch?v=5y1nnTsFBoE Best Wishes!!!Ed
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- November 9, 2016 at 8:48 pm
Sorry about the second link!!! Here is the good one. https://www.youtube.com/watch?v=P4n_ePjlCFE
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- November 9, 2016 at 8:48 pm
Sorry about the second link!!! Here is the good one. https://www.youtube.com/watch?v=P4n_ePjlCFE
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- November 9, 2016 at 8:48 pm
Sorry about the second link!!! Here is the good one. https://www.youtube.com/watch?v=P4n_ePjlCFE
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- November 9, 2016 at 7:42 pm
Thanks Celeste for taking the time to post advice and links. It's tough for a lay person to understand so much of these, but I'll do my best. As mentioned, with my geographical challenges, venturing beyond the West Coast gets more and more troublesome and expensive, yet I understand the stakes, and will do what I need to do. My specialist, has recommended a study combining Epacadostat and PD-L1 checkpoint inhibitor Durvalumab. Its sounds like a great combo, but I don't know if my tumor profile is PD-L1 specific. I'd be happy to hear your opinion on this. In the meantime the good ole advice of "when in doubt, cut it out" does seem most logical. I meet with a surgeon next week to help me understand entire procedure.
Aloha, Gary
-
- November 9, 2016 at 12:36 am
….and finally….just put this up – anti-TYRP1: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/11/anti-tyrp1-monclonal-antibody-next-good.html
Sooo….tip of the arrow is a tough place to be. Not sure how all of these are going to pan out in the end. Not sure how available any of these are. Can't find the next study up yet with anti-TYRP1, though I am sure there will be one.
If I were interested in any of these treatments I would talk to my doc and have him/her call one of the study authors (or call them myself) if need be….to see what is supposed to happen next.
Wish I had something better to offer. Hang in there. love, c
-
- November 9, 2016 at 12:32 am
and…..
IDO inhibitors and JAK inhibitors have been demonstrating some success: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/interesting-trial-options-for-josh.html
anti-KIR has been showin benefit as well (this is old…but I think Kyle Z is still doing this….though I may be wrong): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/09/anti-kir-lirilumab-with-nivo-new-trial.html
…and….
-
- November 9, 2016 at 12:28 am
Hey Gary,
So very sorry!!! But, I have always been an advocate of ….get it out'a there!!! And…having taken care of many kids with functional asplenia (due to sickle cell and other disease processes) or absolute asplenia…because of trauma, etc….this is something that can be done! Well!!! You'll need certain vaccines and precautions, but one can live a happy normal life without a spleen! Not easy…but still. I don't have any data on melanoma in the spleen in particular. So….that said….I'm going to give you some links I have to some of the latest and greatest options. Don't know which one really fits the bill for you and is readily available…but they are certainly things I would talk to my doc about. I can only post 2 links per post….but, here you go:
enoblitzumab: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/07/new-trial-recruiting-pembro-plus-mga271.html
hold on…..
-
- November 9, 2016 at 4:10 am
I wholeheartedly agree!!! CANCER DOES SUCK! I am a cancer survivor, so I know how bad it sucks! That being said, you probably remember that my Dad has over 20 metastis in his spleen. I am sure eventually he will be in your shoes, having to make some tough choices regarding how to deal with it. I know when the time comes it will not be an easy choice, but my gut tells me, when in doubt, cut it out!
I am sure you will come to the right decision for you, whatever that is, we support you.
Sending you positive thoughts and peace.
Best wishes!
🙂
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- November 9, 2016 at 4:10 am
I wholeheartedly agree!!! CANCER DOES SUCK! I am a cancer survivor, so I know how bad it sucks! That being said, you probably remember that my Dad has over 20 metastis in his spleen. I am sure eventually he will be in your shoes, having to make some tough choices regarding how to deal with it. I know when the time comes it will not be an easy choice, but my gut tells me, when in doubt, cut it out!
I am sure you will come to the right decision for you, whatever that is, we support you.
Sending you positive thoughts and peace.
Best wishes!
🙂
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- November 9, 2016 at 7:46 pm
Thanks Jennifer,
I've followed the story of your Dad closely and he does seem to be in the 5% who got mel in the spleen. Let's hope he does not end up like me at all. He can most likely respond to immunotherapy much better with small tumors present. It seems once they get to a certain mass they become impenetrable beasts. I am indeed leaning on the cut it out option for my situation.
Gary
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- November 9, 2016 at 7:46 pm
Thanks Jennifer,
I've followed the story of your Dad closely and he does seem to be in the 5% who got mel in the spleen. Let's hope he does not end up like me at all. He can most likely respond to immunotherapy much better with small tumors present. It seems once they get to a certain mass they become impenetrable beasts. I am indeed leaning on the cut it out option for my situation.
Gary
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- November 9, 2016 at 7:46 pm
Thanks Jennifer,
I've followed the story of your Dad closely and he does seem to be in the 5% who got mel in the spleen. Let's hope he does not end up like me at all. He can most likely respond to immunotherapy much better with small tumors present. It seems once they get to a certain mass they become impenetrable beasts. I am indeed leaning on the cut it out option for my situation.
Gary
-
- November 9, 2016 at 4:10 am
I wholeheartedly agree!!! CANCER DOES SUCK! I am a cancer survivor, so I know how bad it sucks! That being said, you probably remember that my Dad has over 20 metastis in his spleen. I am sure eventually he will be in your shoes, having to make some tough choices regarding how to deal with it. I know when the time comes it will not be an easy choice, but my gut tells me, when in doubt, cut it out!
I am sure you will come to the right decision for you, whatever that is, we support you.
Sending you positive thoughts and peace.
Best wishes!
🙂
-
- November 9, 2016 at 6:12 pm
Hi Gary,
Was saddened to see your posting. MRF asked for questions re treatments a couple of days ago- one of the leading uk hospitals is using these drugs.. so asked Shelby for an opinion ….
This is being trailled as a way of reducing nutrients going to those pesky cells. Not sure if this works – but there does seem to be some science behind it.
Are you of an age where statins and metformin (diabetes med) might be prescribed ? Doxyciline is a malarial antibiotic and available from travel clinics and mebendazole is a thread worm treatment .
There is something on clinical trials.gov but reads as suspended while ethics enuiries are made- as no control group maybe ?
Best of wishes
Deb
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- November 9, 2016 at 6:12 pm
Hi Gary,
Was saddened to see your posting. MRF asked for questions re treatments a couple of days ago- one of the leading uk hospitals is using these drugs.. so asked Shelby for an opinion ….
This is being trailled as a way of reducing nutrients going to those pesky cells. Not sure if this works – but there does seem to be some science behind it.
Are you of an age where statins and metformin (diabetes med) might be prescribed ? Doxyciline is a malarial antibiotic and available from travel clinics and mebendazole is a thread worm treatment .
There is something on clinical trials.gov but reads as suspended while ethics enuiries are made- as no control group maybe ?
Best of wishes
Deb
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- November 9, 2016 at 9:03 pm
Hi Gary,
Trying to weigh up this approach as the evidence is a bit lacking but there does seem to be pointers AND can see that the cost of trials without a big pharma behind it could hinder the quest for evidence in the human population. If it is another way of wounding the melanoma it might be good to run alongside standard of care stuff, but they seem to use the same combo for all….so not that targetted as yet.
BTW I know two individuals minus spleen- one a car crash approx 20 yrs ago- the other a motor bike accident roughly 5 years ago- both seem to rub along fine with the chap in his twenties doing heavy gardening / groundwork on a regular basis.
ps liked the look of the pd 1 plus escpacodot trial…
If the tumour expresses PD1 better chance of response BUT the tumour PD1 assays don't seem to be reliable enough – between labs and different slices of the tumour to offer much predictive help re response…. all so complex …
Surgery plus trial must have merits as reabsorbing large tumour bulk must be a bit of an ask for the body ?
Get the head ready to burst bit…there is so much to consider- side effects response rates- quality of life etc and even tho the stats give indications – they don't tell you how you will fit into the story.
PS Thanks for your posts too. Always supportive and generous with your experience. It does help…
Deb
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- November 9, 2016 at 9:03 pm
Hi Gary,
Trying to weigh up this approach as the evidence is a bit lacking but there does seem to be pointers AND can see that the cost of trials without a big pharma behind it could hinder the quest for evidence in the human population. If it is another way of wounding the melanoma it might be good to run alongside standard of care stuff, but they seem to use the same combo for all….so not that targetted as yet.
BTW I know two individuals minus spleen- one a car crash approx 20 yrs ago- the other a motor bike accident roughly 5 years ago- both seem to rub along fine with the chap in his twenties doing heavy gardening / groundwork on a regular basis.
ps liked the look of the pd 1 plus escpacodot trial…
If the tumour expresses PD1 better chance of response BUT the tumour PD1 assays don't seem to be reliable enough – between labs and different slices of the tumour to offer much predictive help re response…. all so complex …
Surgery plus trial must have merits as reabsorbing large tumour bulk must be a bit of an ask for the body ?
Get the head ready to burst bit…there is so much to consider- side effects response rates- quality of life etc and even tho the stats give indications – they don't tell you how you will fit into the story.
PS Thanks for your posts too. Always supportive and generous with your experience. It does help…
Deb
-
- November 9, 2016 at 9:03 pm
Hi Gary,
Trying to weigh up this approach as the evidence is a bit lacking but there does seem to be pointers AND can see that the cost of trials without a big pharma behind it could hinder the quest for evidence in the human population. If it is another way of wounding the melanoma it might be good to run alongside standard of care stuff, but they seem to use the same combo for all….so not that targetted as yet.
BTW I know two individuals minus spleen- one a car crash approx 20 yrs ago- the other a motor bike accident roughly 5 years ago- both seem to rub along fine with the chap in his twenties doing heavy gardening / groundwork on a regular basis.
ps liked the look of the pd 1 plus escpacodot trial…
If the tumour expresses PD1 better chance of response BUT the tumour PD1 assays don't seem to be reliable enough – between labs and different slices of the tumour to offer much predictive help re response…. all so complex …
Surgery plus trial must have merits as reabsorbing large tumour bulk must be a bit of an ask for the body ?
Get the head ready to burst bit…there is so much to consider- side effects response rates- quality of life etc and even tho the stats give indications – they don't tell you how you will fit into the story.
PS Thanks for your posts too. Always supportive and generous with your experience. It does help…
Deb
-
- November 9, 2016 at 9:14 pm
http://news.cancerconnect.com/epacadostat-plus-keytruda-appears-effective-melanoma/
Different PD1-but some info to chew on…. D
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- November 9, 2016 at 9:14 pm
http://news.cancerconnect.com/epacadostat-plus-keytruda-appears-effective-melanoma/
Different PD1-but some info to chew on…. D
-
- November 9, 2016 at 9:14 pm
http://news.cancerconnect.com/epacadostat-plus-keytruda-appears-effective-melanoma/
Different PD1-but some info to chew on…. D
-
- November 9, 2016 at 6:12 pm
Hi Gary,
Was saddened to see your posting. MRF asked for questions re treatments a couple of days ago- one of the leading uk hospitals is using these drugs.. so asked Shelby for an opinion ….
This is being trailled as a way of reducing nutrients going to those pesky cells. Not sure if this works – but there does seem to be some science behind it.
Are you of an age where statins and metformin (diabetes med) might be prescribed ? Doxyciline is a malarial antibiotic and available from travel clinics and mebendazole is a thread worm treatment .
There is something on clinical trials.gov but reads as suspended while ethics enuiries are made- as no control group maybe ?
Best of wishes
Deb
-
- November 10, 2016 at 1:22 am
I just want to scream. Sorry for crap news Gary, cancer does suck! You're getting good advice here and I know you'll make good decisions. As you know I'm in your corner and saying prayers for you. You're a good man and have lifted me many times when I've been down, sending positive energy your way my friend!
Josh
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- November 10, 2016 at 1:22 am
I just want to scream. Sorry for crap news Gary, cancer does suck! You're getting good advice here and I know you'll make good decisions. As you know I'm in your corner and saying prayers for you. You're a good man and have lifted me many times when I've been down, sending positive energy your way my friend!
Josh
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- November 10, 2016 at 1:22 am
I just want to scream. Sorry for crap news Gary, cancer does suck! You're getting good advice here and I know you'll make good decisions. As you know I'm in your corner and saying prayers for you. You're a good man and have lifted me many times when I've been down, sending positive energy your way my friend!
Josh
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