I need input from the Warriors

Cannabis oil that is CBD oil does not give the "high" feeling that regular marjiuana oil/products give. Can definitely ask the doc about their opinion. It's hard not having good scientific data behind it as far as helping with tumor reduction. But, it has definitely proven to help with side effects like nausea, loss of appetite, etc.

It's good you're keeping a positive attitude about it, it's very likely your dad may not have many side effects. A lot of people go through treament working full time and doing alright. Others get more serious side effects. No one knows where they will land in the side effect pool until they jump in. 

Cannabis oil that is CBD oil does not give the "high" feeling that regular marjiuana oil/products give. Can definitely ask the doc about their opinion. It's hard not having good scientific data behind it as far as helping with tumor reduction. But, it has definitely proven to help with side effects like nausea, loss of appetite, etc.

It's good you're keeping a positive attitude about it, it's very likely your dad may not have many side effects. A lot of people go through treament working full time and doing alright. Others get more serious side effects. No one knows where they will land in the side effect pool until they jump in. 

Cannabis oil that is CBD oil does not give the "high" feeling that regular marjiuana oil/products give. Can definitely ask the doc about their opinion. It's hard not having good scientific data behind it as far as helping with tumor reduction. But, it has definitely proven to help with side effects like nausea, loss of appetite, etc.

It's good you're keeping a positive attitude about it, it's very likely your dad may not have many side effects. A lot of people go through treament working full time and doing alright. Others get more serious side effects. No one knows where they will land in the side effect pool until they jump in. 

Hi Jennifer,

Thats quite a list of big questions.

Supplements– Uk guidlines say teat for VIT d and manage to stay within normal range via supplements.

Cannabis Oil– have heard good things annecdotally for pain relief etc but there are trials on some of the compounds.Depends on strengths variety etc Not a legal option in the UK and might not be ok with some of the trials investigators… but if you have problems with side effects and it works …….

Spleen– forms part of the immune system- would make your Dad potentially more vunerable to certain infections if removed.

Question- would this impact on ability of immunotherapy drugs working ?

Question- would removal take away measurable tumours required for some trials ?

Question- how hard on your Dad is surgical removal of spleen v Cyber knife AND in their opinion would leaving the spleen in place result in more tumour and more Cyber knife over the short term ?

Treatment Plan- ok so Dad is Braf negative which takes some things off the menu.

Try looking at these… ( But be warned some have survival stats which you may prefer to avoid ) Gives an idea of range of options and areas being developed. Really couldn't advise treatment for your Dad as most appropriate treatment depends on other medical conditions, general health, attitude to side effects, general tumour burden etc etc Plus depends on trials available, drug approval for stage.and all the rest.

Sometimes you need to do the research to pick your expert- and then follow their recommendations if you are happy to and understand the reasoning behind the recommendsation. You will sometimes see on here people develping Plan and Plan B – dependent on other factors.

https://www.youtube.com/watch?v=eofW8d4J6sI Decision making Stage III and beyond…

https://www.youtube.com/watch?v=YfZt5JdJ9_c and Immunotherapy

Hope all goes well in the meantime and wish there were simple answers to reasonable questions but things are so much more complicated than that..

Remember to take care of yourself too,

Deb

xx

Hi Jennifer,

Thats quite a list of big questions.

Supplements– Uk guidlines say teat for VIT d and manage to stay within normal range via supplements.

Cannabis Oil– have heard good things annecdotally for pain relief etc but there are trials on some of the compounds.Depends on strengths variety etc Not a legal option in the UK and might not be ok with some of the trials investigators… but if you have problems with side effects and it works …….

Spleen– forms part of the immune system- would make your Dad potentially more vunerable to certain infections if removed.

Question- would this impact on ability of immunotherapy drugs working ?

Question- would removal take away measurable tumours required for some trials ?

Question- how hard on your Dad is surgical removal of spleen v Cyber knife AND in their opinion would leaving the spleen in place result in more tumour and more Cyber knife over the short term ?

Treatment Plan- ok so Dad is Braf negative which takes some things off the menu.

Try looking at these… ( But be warned some have survival stats which you may prefer to avoid ) Gives an idea of range of options and areas being developed. Really couldn't advise treatment for your Dad as most appropriate treatment depends on other medical conditions, general health, attitude to side effects, general tumour burden etc etc Plus depends on trials available, drug approval for stage.and all the rest.

Sometimes you need to do the research to pick your expert- and then follow their recommendations if you are happy to and understand the reasoning behind the recommendsation. You will sometimes see on here people develping Plan and Plan B – dependent on other factors.

https://www.youtube.com/watch?v=eofW8d4J6sI Decision making Stage III and beyond…

https://www.youtube.com/watch?v=YfZt5JdJ9_c and Immunotherapy

Hope all goes well in the meantime and wish there were simple answers to reasonable questions but things are so much more complicated than that..

Remember to take care of yourself too,

Deb

xx

Hi Jennifer,

Thats quite a list of big questions.

Supplements– Uk guidlines say teat for VIT d and manage to stay within normal range via supplements.

Cannabis Oil– have heard good things annecdotally for pain relief etc but there are trials on some of the compounds.Depends on strengths variety etc Not a legal option in the UK and might not be ok with some of the trials investigators… but if you have problems with side effects and it works …….

Spleen– forms part of the immune system- would make your Dad potentially more vunerable to certain infections if removed.

Question- would this impact on ability of immunotherapy drugs working ?

Question- would removal take away measurable tumours required for some trials ?

Question- how hard on your Dad is surgical removal of spleen v Cyber knife AND in their opinion would leaving the spleen in place result in more tumour and more Cyber knife over the short term ?

Treatment Plan- ok so Dad is Braf negative which takes some things off the menu.

Try looking at these… ( But be warned some have survival stats which you may prefer to avoid ) Gives an idea of range of options and areas being developed. Really couldn't advise treatment for your Dad as most appropriate treatment depends on other medical conditions, general health, attitude to side effects, general tumour burden etc etc Plus depends on trials available, drug approval for stage.and all the rest.

Sometimes you need to do the research to pick your expert- and then follow their recommendations if you are happy to and understand the reasoning behind the recommendsation. You will sometimes see on here people develping Plan and Plan B – dependent on other factors.

https://www.youtube.com/watch?v=eofW8d4J6sI Decision making Stage III and beyond…

https://www.youtube.com/watch?v=YfZt5JdJ9_c and Immunotherapy

Hope all goes well in the meantime and wish there were simple answers to reasonable questions but things are so much more complicated than that..

Remember to take care of yourself too,

Deb

xx

I've actually thought about trying the cannabis oil myself, but that is more for side effect control, now that I am "finished" with Keytruda (Pembro).  Like your dad, I don't like to have any "high" feeling, because living day to day, awareness and energy are treasured. I have read about oils as well as capsules/tablets that don't contain the THC that makes one feel "tripped out". Have not tried it yet, but will soon be traveling to Colorado… soooooo… maybe a little on the road research? ; )

As far as opinions/info regarding systemic treatment options……….

I had lung (9cm & 2cm in right lower lobe, 2cm in left lower) and brain metastasis (constantly and too rapidly popping up in varied areas). Like your dad, gamma was the first line of treatment. After that, we went for Ipi, as Pembro was not yet an option, and I am not the traditional BRAF-V600 E or K… soooo… basically considered BRAF "negative" in the eyes of FDA approved medications. I don't believe anyone ever discussed the possibility of radiation for the lung mets. I imagine they are quite difficult to target with the movement of the chest. That makes the question of Cyber Knife or surgical resection a more difficult question to answer with your dad's spleen. I had my right lung lobe removed, to take the largest "cancer cell factory" (aka: the biggest lesion) out of the equation. Our thoughts were to lighten the tumor load that the immunotherapy had to chase after. Ipi did nothing to help slow my brain metastasis, but I know others in which it did. Ipi did slow the growth of my lung mets, but did not stop them. When Pembro gained FDA approval, I was on it immediately. The remaining met in the lower left lobe of my lungs dissappered. The lump I had developed on my left forearm melted away. I could feel it decreasing in size. What a wonderful gauge without having to wait for imaging results! It didn't take long for the Pembro to work for me. Even the brain lesions stopped cropping up after the first (maybe second?) infusion…. which was AMAZING news for me, given the rate at which I was going in for gamma. 

I guess my advice would be to ask what the benefits of cyber knife over surgical removal of the spleen would be. What are the downfalls of each of those procedures? What are the effects of living without the spleen? Ipi or Keytruda (or Opdivo) may tackle those lesions without doing either cyber knife or surgery too. Just something else to wonder about! Personally, I would shoot for Keytruda or Opdivo over Ipi, as both have better proven results with fewer side effects, and they show more immediate tumor reduction. Aaaaand, he is more likely to have help with brain met control with the anti-pd1's (Keytruda or Opdivo) over Ipi (targets CTLA-4). The combo Ipi/Opdivo may be an even stronger way to go, as it targets both CTLA-4 and PD-1 pathways… however, you risk heavier side effects, so balancing this out is another thing to consider. There really is no "right" or "wrong" answer for each of us. Everyone has a different tolerance for how their body will respond to treatments (drugs, radiation, or surgical), and what their personal preference is. I'm incredibly aggressive. If it can be cut out of me, cut it out. If not, radiate it. I wanted my immunotherapy drugs to have the smallest possible mutant cell numbers to go after. But that is what worked well for ME… my physical ability to recover, the ability for my family to get time off for recovery support, my ability to take time out of work… etc. Knowing there is a plan in place and being acted upon will bring you some mental relief. He is over the first hurdle… and not a fun one, I might add! He's already warrior strong! 

I've actually thought about trying the cannabis oil myself, but that is more for side effect control, now that I am "finished" with Keytruda (Pembro).  Like your dad, I don't like to have any "high" feeling, because living day to day, awareness and energy are treasured. I have read about oils as well as capsules/tablets that don't contain the THC that makes one feel "tripped out". Have not tried it yet, but will soon be traveling to Colorado… soooooo… maybe a little on the road research? ; )

As far as opinions/info regarding systemic treatment options……….

I had lung (9cm & 2cm in right lower lobe, 2cm in left lower) and brain metastasis (constantly and too rapidly popping up in varied areas). Like your dad, gamma was the first line of treatment. After that, we went for Ipi, as Pembro was not yet an option, and I am not the traditional BRAF-V600 E or K… soooo… basically considered BRAF "negative" in the eyes of FDA approved medications. I don't believe anyone ever discussed the possibility of radiation for the lung mets. I imagine they are quite difficult to target with the movement of the chest. That makes the question of Cyber Knife or surgical resection a more difficult question to answer with your dad's spleen. I had my right lung lobe removed, to take the largest "cancer cell factory" (aka: the biggest lesion) out of the equation. Our thoughts were to lighten the tumor load that the immunotherapy had to chase after. Ipi did nothing to help slow my brain metastasis, but I know others in which it did. Ipi did slow the growth of my lung mets, but did not stop them. When Pembro gained FDA approval, I was on it immediately. The remaining met in the lower left lobe of my lungs dissappered. The lump I had developed on my left forearm melted away. I could feel it decreasing in size. What a wonderful gauge without having to wait for imaging results! It didn't take long for the Pembro to work for me. Even the brain lesions stopped cropping up after the first (maybe second?) infusion…. which was AMAZING news for me, given the rate at which I was going in for gamma. 

I guess my advice would be to ask what the benefits of cyber knife over surgical removal of the spleen would be. What are the downfalls of each of those procedures? What are the effects of living without the spleen? Ipi or Keytruda (or Opdivo) may tackle those lesions without doing either cyber knife or surgery too. Just something else to wonder about! Personally, I would shoot for Keytruda or Opdivo over Ipi, as both have better proven results with fewer side effects, and they show more immediate tumor reduction. Aaaaand, he is more likely to have help with brain met control with the anti-pd1's (Keytruda or Opdivo) over Ipi (targets CTLA-4). The combo Ipi/Opdivo may be an even stronger way to go, as it targets both CTLA-4 and PD-1 pathways… however, you risk heavier side effects, so balancing this out is another thing to consider. There really is no "right" or "wrong" answer for each of us. Everyone has a different tolerance for how their body will respond to treatments (drugs, radiation, or surgical), and what their personal preference is. I'm incredibly aggressive. If it can be cut out of me, cut it out. If not, radiate it. I wanted my immunotherapy drugs to have the smallest possible mutant cell numbers to go after. But that is what worked well for ME… my physical ability to recover, the ability for my family to get time off for recovery support, my ability to take time out of work… etc. Knowing there is a plan in place and being acted upon will bring you some mental relief. He is over the first hurdle… and not a fun one, I might add! He's already warrior strong! 

I've actually thought about trying the cannabis oil myself, but that is more for side effect control, now that I am "finished" with Keytruda (Pembro).  Like your dad, I don't like to have any "high" feeling, because living day to day, awareness and energy are treasured. I have read about oils as well as capsules/tablets that don't contain the THC that makes one feel "tripped out". Have not tried it yet, but will soon be traveling to Colorado… soooooo… maybe a little on the road research? ; )

As far as opinions/info regarding systemic treatment options……….

I had lung (9cm & 2cm in right lower lobe, 2cm in left lower) and brain metastasis (constantly and too rapidly popping up in varied areas). Like your dad, gamma was the first line of treatment. After that, we went for Ipi, as Pembro was not yet an option, and I am not the traditional BRAF-V600 E or K… soooo… basically considered BRAF "negative" in the eyes of FDA approved medications. I don't believe anyone ever discussed the possibility of radiation for the lung mets. I imagine they are quite difficult to target with the movement of the chest. That makes the question of Cyber Knife or surgical resection a more difficult question to answer with your dad's spleen. I had my right lung lobe removed, to take the largest "cancer cell factory" (aka: the biggest lesion) out of the equation. Our thoughts were to lighten the tumor load that the immunotherapy had to chase after. Ipi did nothing to help slow my brain metastasis, but I know others in which it did. Ipi did slow the growth of my lung mets, but did not stop them. When Pembro gained FDA approval, I was on it immediately. The remaining met in the lower left lobe of my lungs dissappered. The lump I had developed on my left forearm melted away. I could feel it decreasing in size. What a wonderful gauge without having to wait for imaging results! It didn't take long for the Pembro to work for me. Even the brain lesions stopped cropping up after the first (maybe second?) infusion…. which was AMAZING news for me, given the rate at which I was going in for gamma. 

I guess my advice would be to ask what the benefits of cyber knife over surgical removal of the spleen would be. What are the downfalls of each of those procedures? What are the effects of living without the spleen? Ipi or Keytruda (or Opdivo) may tackle those lesions without doing either cyber knife or surgery too. Just something else to wonder about! Personally, I would shoot for Keytruda or Opdivo over Ipi, as both have better proven results with fewer side effects, and they show more immediate tumor reduction. Aaaaand, he is more likely to have help with brain met control with the anti-pd1's (Keytruda or Opdivo) over Ipi (targets CTLA-4). The combo Ipi/Opdivo may be an even stronger way to go, as it targets both CTLA-4 and PD-1 pathways… however, you risk heavier side effects, so balancing this out is another thing to consider. There really is no "right" or "wrong" answer for each of us. Everyone has a different tolerance for how their body will respond to treatments (drugs, radiation, or surgical), and what their personal preference is. I'm incredibly aggressive. If it can be cut out of me, cut it out. If not, radiate it. I wanted my immunotherapy drugs to have the smallest possible mutant cell numbers to go after. But that is what worked well for ME… my physical ability to recover, the ability for my family to get time off for recovery support, my ability to take time out of work… etc. Knowing there is a plan in place and being acted upon will bring you some mental relief. He is over the first hurdle… and not a fun one, I might add! He's already warrior strong! 

Hi Jennifer,

I just have to reply to this one as there are several similarities in Dad's and my case.  First the spleen.  Although it is considered rare for mel to infect the spleen, something like less than 5%, I got that one, and I got it big-time.  It is in fact the one big thing that is keeping me up at night as I try and figure out what to do.  My tumors there started out as what was likely three lesions, which grew extremely rapidly and merged into what is described as a single mass, measuring more than 14cm x 11cm x 9cm.  Think grapefruit sized.  I'm on Opdivo, almost at the one-year point and it has worked to diminish several smaller tumors but the big bad-boy remains stubborn.  Feeling like I need to do something my specialist suggested radiation and is against surgery (removal).  I have responded fairly well to radiation before and also feel it is working in conjunction with immunotherapy.  I sought advice from two different radiation oncologists (RO).  The problem is the location of spleen overlaps parts of colon and stomach which are highly radiation adverse.  The potential to do permanent damage to GI tract is a non-starter for me.  I am not willing to have chronic diarrhea the rest of my life. I could probably treat part of the mass without doing much collateral damage. My specialist calls surgery "poking the pig".  For whatever the reason he thinks surgery ends up causing the mel to spread, and as noted, leaves you much more susceptible to infection although many people can and do live without this organ.  No one has considered gamma for me, probably because the size of my mass and I also looked into Proton Beam radiation which sounds good, but also was advised it would not work. The thing I would recommend is not rushing into anything regarding the spleen.  I am functioning just fine with this monster within.  Blood work is great and no particular pain except that it pushes against stomach and I often feel full after eating just small portions.  My hope is that immunotherapy will finally kick-in and start attacking the metastatic mass.  If my next scan continues to show no progress, I will likely jump to a trial of drug combo's and try and attack that way.  On a final note, like your Dad, I have no desire to "get high" and have access to just about any cannabis product available.  Use of a all-CBD concentrate would be the way to go, although I have yet to go the road.  But all my doctors seem very neutral about cannabis and have not ever suggested it would interfere with my other treatments.  Your job now is to get Dad into care of a specialist.  No excuses.  I travel thousands of miles and incur huge expense doing so because of where I live.  But I can tell you for sure, the only reason I am here writing this today is because of my specialists care.  My local onc, God bless him, had given up long ago.

Gary

Hi Jennifer,

I just have to reply to this one as there are several similarities in Dad's and my case.  First the spleen.  Although it is considered rare for mel to infect the spleen, something like less than 5%, I got that one, and I got it big-time.  It is in fact the one big thing that is keeping me up at night as I try and figure out what to do.  My tumors there started out as what was likely three lesions, which grew extremely rapidly and merged into what is described as a single mass, measuring more than 14cm x 11cm x 9cm.  Think grapefruit sized.  I'm on Opdivo, almost at the one-year point and it has worked to diminish several smaller tumors but the big bad-boy remains stubborn.  Feeling like I need to do something my specialist suggested radiation and is against surgery (removal).  I have responded fairly well to radiation before and also feel it is working in conjunction with immunotherapy.  I sought advice from two different radiation oncologists (RO).  The problem is the location of spleen overlaps parts of colon and stomach which are highly radiation adverse.  The potential to do permanent damage to GI tract is a non-starter for me.  I am not willing to have chronic diarrhea the rest of my life. I could probably treat part of the mass without doing much collateral damage. My specialist calls surgery "poking the pig".  For whatever the reason he thinks surgery ends up causing the mel to spread, and as noted, leaves you much more susceptible to infection although many people can and do live without this organ.  No one has considered gamma for me, probably because the size of my mass and I also looked into Proton Beam radiation which sounds good, but also was advised it would not work. The thing I would recommend is not rushing into anything regarding the spleen.  I am functioning just fine with this monster within.  Blood work is great and no particular pain except that it pushes against stomach and I often feel full after eating just small portions.  My hope is that immunotherapy will finally kick-in and start attacking the metastatic mass.  If my next scan continues to show no progress, I will likely jump to a trial of drug combo's and try and attack that way.  On a final note, like your Dad, I have no desire to "get high" and have access to just about any cannabis product available.  Use of a all-CBD concentrate would be the way to go, although I have yet to go the road.  But all my doctors seem very neutral about cannabis and have not ever suggested it would interfere with my other treatments.  Your job now is to get Dad into care of a specialist.  No excuses.  I travel thousands of miles and incur huge expense doing so because of where I live.  But I can tell you for sure, the only reason I am here writing this today is because of my specialists care.  My local onc, God bless him, had given up long ago.

Gary

Hi Jennifer,

I just have to reply to this one as there are several similarities in Dad's and my case.  First the spleen.  Although it is considered rare for mel to infect the spleen, something like less than 5%, I got that one, and I got it big-time.  It is in fact the one big thing that is keeping me up at night as I try and figure out what to do.  My tumors there started out as what was likely three lesions, which grew extremely rapidly and merged into what is described as a single mass, measuring more than 14cm x 11cm x 9cm.  Think grapefruit sized.  I'm on Opdivo, almost at the one-year point and it has worked to diminish several smaller tumors but the big bad-boy remains stubborn.  Feeling like I need to do something my specialist suggested radiation and is against surgery (removal).  I have responded fairly well to radiation before and also feel it is working in conjunction with immunotherapy.  I sought advice from two different radiation oncologists (RO).  The problem is the location of spleen overlaps parts of colon and stomach which are highly radiation adverse.  The potential to do permanent damage to GI tract is a non-starter for me.  I am not willing to have chronic diarrhea the rest of my life. I could probably treat part of the mass without doing much collateral damage. My specialist calls surgery "poking the pig".  For whatever the reason he thinks surgery ends up causing the mel to spread, and as noted, leaves you much more susceptible to infection although many people can and do live without this organ.  No one has considered gamma for me, probably because the size of my mass and I also looked into Proton Beam radiation which sounds good, but also was advised it would not work. The thing I would recommend is not rushing into anything regarding the spleen.  I am functioning just fine with this monster within.  Blood work is great and no particular pain except that it pushes against stomach and I often feel full after eating just small portions.  My hope is that immunotherapy will finally kick-in and start attacking the metastatic mass.  If my next scan continues to show no progress, I will likely jump to a trial of drug combo's and try and attack that way.  On a final note, like your Dad, I have no desire to "get high" and have access to just about any cannabis product available.  Use of a all-CBD concentrate would be the way to go, although I have yet to go the road.  But all my doctors seem very neutral about cannabis and have not ever suggested it would interfere with my other treatments.  Your job now is to get Dad into care of a specialist.  No excuses.  I travel thousands of miles and incur huge expense doing so because of where I live.  But I can tell you for sure, the only reason I am here writing this today is because of my specialists care.  My local onc, God bless him, had given up long ago.

Gary