Stage 4 so many potential paths causing confusion..

This is a UK resource but it is very clear and useful about terminology.

http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/advanced-melanoma

I had a low tumour burden like your mother. My team suggested immunotherapy (making the cancer cells more visible to your mother's immune system) as my first step. If necessary, this would be followed by targeted treatment (the drugs that go for the cancer cells based on their genertic mutations) as my melanoma is BRAF+.

Although the side effects of the immunotherapies sound dreadful when listed, I believe they should be put in context. The side effects are very variable from person to person (beause different people's ummune systems are/are not activated and in different ways). Experienced melanoma teams are now used to monitoring for side effects and step in if they get too bad.

I believe that it is important that your mother has made an informed decision and that it is her decision. That makes going forward easier. 

My husband is my 'second pair of ears' in all my consultations, which is great. Sometimes we realise we have understood something two different ways so we need to check.

I often had questions after the consultation rather than during and my team allowed me to ask those of a specialist nurse via email. She could answer most of them and referred the others to my doctor.

Also, I believe that it is important to accept that there is no 'right' decision when treating melanoma. It really is a 'best guess' for that particular patient.

This is a UK resource but it is very clear and useful about terminology.

http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/advanced-melanoma

I had a low tumour burden like your mother. My team suggested immunotherapy (making the cancer cells more visible to your mother's immune system) as my first step. If necessary, this would be followed by targeted treatment (the drugs that go for the cancer cells based on their genertic mutations) as my melanoma is BRAF+.

Although the side effects of the immunotherapies sound dreadful when listed, I believe they should be put in context. The side effects are very variable from person to person (beause different people's ummune systems are/are not activated and in different ways). Experienced melanoma teams are now used to monitoring for side effects and step in if they get too bad.

I believe that it is important that your mother has made an informed decision and that it is her decision. That makes going forward easier. 

My husband is my 'second pair of ears' in all my consultations, which is great. Sometimes we realise we have understood something two different ways so we need to check.

I often had questions after the consultation rather than during and my team allowed me to ask those of a specialist nurse via email. She could answer most of them and referred the others to my doctor.

Also, I believe that it is important to accept that there is no 'right' decision when treating melanoma. It really is a 'best guess' for that particular patient.

This is a UK resource but it is very clear and useful about terminology.

http://www.cancerresearchuk.org/about-cancer/type/melanoma/treatment/advanced-melanoma

I had a low tumour burden like your mother. My team suggested immunotherapy (making the cancer cells more visible to your mother's immune system) as my first step. If necessary, this would be followed by targeted treatment (the drugs that go for the cancer cells based on their genertic mutations) as my melanoma is BRAF+.

Although the side effects of the immunotherapies sound dreadful when listed, I believe they should be put in context. The side effects are very variable from person to person (beause different people's ummune systems are/are not activated and in different ways). Experienced melanoma teams are now used to monitoring for side effects and step in if they get too bad.

I believe that it is important that your mother has made an informed decision and that it is her decision. That makes going forward easier. 

My husband is my 'second pair of ears' in all my consultations, which is great. Sometimes we realise we have understood something two different ways so we need to check.

I often had questions after the consultation rather than during and my team allowed me to ask those of a specialist nurse via email. She could answer most of them and referred the others to my doctor.

Also, I believe that it is important to accept that there is no 'right' decision when treating melanoma. It really is a 'best guess' for that particular patient.

The number of options can defintiely be very overwhelming, and one of the best things you can do is continually ask your doctor questions. It might be helpful to take a look at this guide from The Aim at Melanoma Foundation. It has lots of specific quesitons for digging more into treatment options with the doctor.

https://www.aimatmelanoma.org/stages-of-melanoma/stage-iv-melanoma/what-to-ask-your-doctor-about-stage-iv-melanoma/

Also, you mentioned she's seen multiple docs. Has she seen a melanoma specialist specifically?

-MW

The number of options can defintiely be very overwhelming, and one of the best things you can do is continually ask your doctor questions. It might be helpful to take a look at this guide from The Aim at Melanoma Foundation. It has lots of specific quesitons for digging more into treatment options with the doctor.

https://www.aimatmelanoma.org/stages-of-melanoma/stage-iv-melanoma/what-to-ask-your-doctor-about-stage-iv-melanoma/

Also, you mentioned she's seen multiple docs. Has she seen a melanoma specialist specifically?

-MW

The number of options can defintiely be very overwhelming, and one of the best things you can do is continually ask your doctor questions. It might be helpful to take a look at this guide from The Aim at Melanoma Foundation. It has lots of specific quesitons for digging more into treatment options with the doctor.

https://www.aimatmelanoma.org/stages-of-melanoma/stage-iv-melanoma/what-to-ask-your-doctor-about-stage-iv-melanoma/

Also, you mentioned she's seen multiple docs. Has she seen a melanoma specialist specifically?

-MW

Jade,

It is very overwhelming but you seem to be a quick study.  Most of your question mark statements are true.

Your two Anti-PD1 options are Opdivo and Keytruda.  Results for the two have been very similar.  In your Mom's case that would be a very viable option.  There can be side effects but the chance is much less than say with a Yervoy or a combination.  I was on Opdivo for nearly two years and could hardly tell I was taking anything. 

Another option would be Opdivo and Yervoy combo.  This combination has been very effective but also the side effects are much more likely.  I think this is a great option but if your mom is side effect risk adverse you may not want to go this route.  You could possibly start with Opdivo alone and then based on results add the yervoy for another punch later on.

There are some great trials with really promising stuff going on.  Many are combo's with one of the anti-PD1 drugs.  Yes there are risk involved but many trials have gone through a phase I and phase II before the phase III so some of the risk has been mitigated.  I traveled 6 hours one way for two years for a Opdivo + Yervoy trial and would do it again in a heart beat but that was before some of the options you already have were available. 

I would not recommend MEK/TAF combo (BRAF) for your mom right now regardless of Braf status.  MEK/TAF is a great treatment due to the high percentage of responders and it's quick action but as you mentioned it usually does not last long (there are some exceptions).  If your Mom had a heavy tumor burden and time was not on her side I would use MEK/TAF as a bridge to get her to a immunotherapy treatment. 

If you end up doing a solo anti-PD1 I really like the idea of ablation or radiation of one of the accessible areas.  When they radiate a tumor antigens are released.  Your immune system recognizes these antigens and then looks for them in other places.  That combined with the added punch of the Anti-Pd1 could be a very good option.

Good luck to you and your mom.

Brian

Jade,

It is very overwhelming but you seem to be a quick study.  Most of your question mark statements are true.

Your two Anti-PD1 options are Opdivo and Keytruda.  Results for the two have been very similar.  In your Mom's case that would be a very viable option.  There can be side effects but the chance is much less than say with a Yervoy or a combination.  I was on Opdivo for nearly two years and could hardly tell I was taking anything. 

Another option would be Opdivo and Yervoy combo.  This combination has been very effective but also the side effects are much more likely.  I think this is a great option but if your mom is side effect risk adverse you may not want to go this route.  You could possibly start with Opdivo alone and then based on results add the yervoy for another punch later on.

There are some great trials with really promising stuff going on.  Many are combo's with one of the anti-PD1 drugs.  Yes there are risk involved but many trials have gone through a phase I and phase II before the phase III so some of the risk has been mitigated.  I traveled 6 hours one way for two years for a Opdivo + Yervoy trial and would do it again in a heart beat but that was before some of the options you already have were available. 

I would not recommend MEK/TAF combo (BRAF) for your mom right now regardless of Braf status.  MEK/TAF is a great treatment due to the high percentage of responders and it's quick action but as you mentioned it usually does not last long (there are some exceptions).  If your Mom had a heavy tumor burden and time was not on her side I would use MEK/TAF as a bridge to get her to a immunotherapy treatment. 

If you end up doing a solo anti-PD1 I really like the idea of ablation or radiation of one of the accessible areas.  When they radiate a tumor antigens are released.  Your immune system recognizes these antigens and then looks for them in other places.  That combined with the added punch of the Anti-Pd1 could be a very good option.

Good luck to you and your mom.

Brian

Jade,

It is very overwhelming but you seem to be a quick study.  Most of your question mark statements are true.

Your two Anti-PD1 options are Opdivo and Keytruda.  Results for the two have been very similar.  In your Mom's case that would be a very viable option.  There can be side effects but the chance is much less than say with a Yervoy or a combination.  I was on Opdivo for nearly two years and could hardly tell I was taking anything. 

Another option would be Opdivo and Yervoy combo.  This combination has been very effective but also the side effects are much more likely.  I think this is a great option but if your mom is side effect risk adverse you may not want to go this route.  You could possibly start with Opdivo alone and then based on results add the yervoy for another punch later on.

There are some great trials with really promising stuff going on.  Many are combo's with one of the anti-PD1 drugs.  Yes there are risk involved but many trials have gone through a phase I and phase II before the phase III so some of the risk has been mitigated.  I traveled 6 hours one way for two years for a Opdivo + Yervoy trial and would do it again in a heart beat but that was before some of the options you already have were available. 

I would not recommend MEK/TAF combo (BRAF) for your mom right now regardless of Braf status.  MEK/TAF is a great treatment due to the high percentage of responders and it's quick action but as you mentioned it usually does not last long (there are some exceptions).  If your Mom had a heavy tumor burden and time was not on her side I would use MEK/TAF as a bridge to get her to a immunotherapy treatment. 

If you end up doing a solo anti-PD1 I really like the idea of ablation or radiation of one of the accessible areas.  When they radiate a tumor antigens are released.  Your immune system recognizes these antigens and then looks for them in other places.  That combined with the added punch of the Anti-Pd1 could be a very good option.

Good luck to you and your mom.

Brian

Hi,

The option I chose in a somewhat similar situation (relatively low tumor burden) is the PD1 combined with an experimental drug (lirilumab). I wanted PD1, but wanted a combo because the combo can attack the disease from two different angles. Also, I wanted to get a combo PD1 treatment before getting the FDA approved single drug PD1 treatment. 

I knew I wouldn't know what the side effects would be until I tried it. And one of the drugs, lirilumab, is experimental. I did know I had gotten through the 4-dose cycle with ipilimumab a couple of years earlier with no significant side effects.

So far my disease has been stable. I don't show up in any of the "response" statistics since the tumor hasn't shrunk — it just stopped getting bigger. But where I do show up are in the OS (overall survival) stat — the one that counts!

I won't give advice or make recommendations — the MRF Posting Policies say, Share your personal experiences without giving medical advice. So — sharing my experience. Good luck to you and your Mom abnd her treatment decisions.

– Kyle

Hi,

The option I chose in a somewhat similar situation (relatively low tumor burden) is the PD1 combined with an experimental drug (lirilumab). I wanted PD1, but wanted a combo because the combo can attack the disease from two different angles. Also, I wanted to get a combo PD1 treatment before getting the FDA approved single drug PD1 treatment. 

I knew I wouldn't know what the side effects would be until I tried it. And one of the drugs, lirilumab, is experimental. I did know I had gotten through the 4-dose cycle with ipilimumab a couple of years earlier with no significant side effects.

So far my disease has been stable. I don't show up in any of the "response" statistics since the tumor hasn't shrunk — it just stopped getting bigger. But where I do show up are in the OS (overall survival) stat — the one that counts!

I won't give advice or make recommendations — the MRF Posting Policies say, Share your personal experiences without giving medical advice. So — sharing my experience. Good luck to you and your Mom abnd her treatment decisions.

– Kyle

Hi,

The option I chose in a somewhat similar situation (relatively low tumor burden) is the PD1 combined with an experimental drug (lirilumab). I wanted PD1, but wanted a combo because the combo can attack the disease from two different angles. Also, I wanted to get a combo PD1 treatment before getting the FDA approved single drug PD1 treatment. 

I knew I wouldn't know what the side effects would be until I tried it. And one of the drugs, lirilumab, is experimental. I did know I had gotten through the 4-dose cycle with ipilimumab a couple of years earlier with no significant side effects.

So far my disease has been stable. I don't show up in any of the "response" statistics since the tumor hasn't shrunk — it just stopped getting bigger. But where I do show up are in the OS (overall survival) stat — the one that counts!

I won't give advice or make recommendations — the MRF Posting Policies say, Share your personal experiences without giving medical advice. So — sharing my experience. Good luck to you and your Mom abnd her treatment decisions.

– Kyle

Hi Jade,

Sorry for what your mom is going through. She is lucky to have you in her corner. I have been dealing with melanoma since 2003. I was Stage IV in 2010. After SRS to a brain met and surgery to remove the right upper lobe of my lung and the offending tumor in that year…I also joined a phase 1 anti-PD1 (Nivolumab now called Opdivo) trial, traveling to Tampa from TN for 2 1/2 years. It was tough…but I was lucky to have the option. I remain NED today.

The horrible news for your mom is that she has melanoma. The good news is that she has FDA approved options….NONE of which were available in 2010.

BRAF inhibitors: Fast working if your tumor is BRAF positive. When combined with MEK inhibitors they provide patients with fewer side effects than when BRAFi is given alone and when using alternate dosing schedules….stay effective longer than what used to be an expected 6-9 months only. In fact , some folks are doing well for years…but tumor work around is still a significant problem and therefore they are often used to rapidly decrease tumor burden and then start immunotherapy.

Immunotherapy: These drugs don't actually kill your tumors…but fire up your t-cells so that they will.

             Ipilimumab (yervoy) – 15% response rate.

              Anti-PD1 – Pembrolizumab (keytruda) or Nivolumab (opdivo) -very similar response rate (about 40%) and side effect profile. Side effects usually less severe than ipi causes. Rashes, fatigue, arthralgias – common. Tough stuff like colitis, pneumonitis, thyroid problems can happen, but are much better recognized these days and melanoma docs know better how to treat them. 

              Ipi/nivo combo – response rate about 50-60%. Because of ipi mostly…the side effects are more frequent than with nivo alone.

Radiation – once thought not to be effective in melanoma….and alone it's not that great. But….combined with immunotherapy (whether we are talking SRS, ablation) the combo has a synergistic effect that is better than either alone.

There are many new drugs in trial….and even more trials with various combo's….that are very promising. However, trials are not for the faint of heart….and there are lots of good available options today. But, looking at trial options never hurts. Phase 1 = really just to determine dosing….how much does it take to get a result and how much do patients find intolerable. Usually not previously tested (or only a small bit) so you might grow 3 heads, have no benefit, or be cured…..but everybody gets the drug. Phase 3 and 4 trials – more data available lets folks know about effects…positive and negative….but now you are dealing with comparative arms…which may give you nothing or a lesser med. Some of these have cross over options…some do not. All trials have reasons for which they can kick you off. Read the fine print!

Sooooo…lots to learn. As Brian was sweet to note….there is even more intel on my blog….and you can search for the info that interests you and your mom. Lots of folks can give you good info on this forum as well. Hang in there. I wish you and your mom well.  Celeste

Hi Jade,

Sorry for what your mom is going through. She is lucky to have you in her corner. I have been dealing with melanoma since 2003. I was Stage IV in 2010. After SRS to a brain met and surgery to remove the right upper lobe of my lung and the offending tumor in that year…I also joined a phase 1 anti-PD1 (Nivolumab now called Opdivo) trial, traveling to Tampa from TN for 2 1/2 years. It was tough…but I was lucky to have the option. I remain NED today.

The horrible news for your mom is that she has melanoma. The good news is that she has FDA approved options….NONE of which were available in 2010.

BRAF inhibitors: Fast working if your tumor is BRAF positive. When combined with MEK inhibitors they provide patients with fewer side effects than when BRAFi is given alone and when using alternate dosing schedules….stay effective longer than what used to be an expected 6-9 months only. In fact , some folks are doing well for years…but tumor work around is still a significant problem and therefore they are often used to rapidly decrease tumor burden and then start immunotherapy.

Immunotherapy: These drugs don't actually kill your tumors…but fire up your t-cells so that they will.

             Ipilimumab (yervoy) – 15% response rate.

              Anti-PD1 – Pembrolizumab (keytruda) or Nivolumab (opdivo) -very similar response rate (about 40%) and side effect profile. Side effects usually less severe than ipi causes. Rashes, fatigue, arthralgias – common. Tough stuff like colitis, pneumonitis, thyroid problems can happen, but are much better recognized these days and melanoma docs know better how to treat them. 

              Ipi/nivo combo – response rate about 50-60%. Because of ipi mostly…the side effects are more frequent than with nivo alone.

Radiation – once thought not to be effective in melanoma….and alone it's not that great. But….combined with immunotherapy (whether we are talking SRS, ablation) the combo has a synergistic effect that is better than either alone.

There are many new drugs in trial….and even more trials with various combo's….that are very promising. However, trials are not for the faint of heart….and there are lots of good available options today. But, looking at trial options never hurts. Phase 1 = really just to determine dosing….how much does it take to get a result and how much do patients find intolerable. Usually not previously tested (or only a small bit) so you might grow 3 heads, have no benefit, or be cured…..but everybody gets the drug. Phase 3 and 4 trials – more data available lets folks know about effects…positive and negative….but now you are dealing with comparative arms…which may give you nothing or a lesser med. Some of these have cross over options…some do not. All trials have reasons for which they can kick you off. Read the fine print!

Sooooo…lots to learn. As Brian was sweet to note….there is even more intel on my blog….and you can search for the info that interests you and your mom. Lots of folks can give you good info on this forum as well. Hang in there. I wish you and your mom well.  Celeste

Hi Jade,

Sorry for what your mom is going through. She is lucky to have you in her corner. I have been dealing with melanoma since 2003. I was Stage IV in 2010. After SRS to a brain met and surgery to remove the right upper lobe of my lung and the offending tumor in that year…I also joined a phase 1 anti-PD1 (Nivolumab now called Opdivo) trial, traveling to Tampa from TN for 2 1/2 years. It was tough…but I was lucky to have the option. I remain NED today.

The horrible news for your mom is that she has melanoma. The good news is that she has FDA approved options….NONE of which were available in 2010.

BRAF inhibitors: Fast working if your tumor is BRAF positive. When combined with MEK inhibitors they provide patients with fewer side effects than when BRAFi is given alone and when using alternate dosing schedules….stay effective longer than what used to be an expected 6-9 months only. In fact , some folks are doing well for years…but tumor work around is still a significant problem and therefore they are often used to rapidly decrease tumor burden and then start immunotherapy.

Immunotherapy: These drugs don't actually kill your tumors…but fire up your t-cells so that they will.

             Ipilimumab (yervoy) – 15% response rate.

              Anti-PD1 – Pembrolizumab (keytruda) or Nivolumab (opdivo) -very similar response rate (about 40%) and side effect profile. Side effects usually less severe than ipi causes. Rashes, fatigue, arthralgias – common. Tough stuff like colitis, pneumonitis, thyroid problems can happen, but are much better recognized these days and melanoma docs know better how to treat them. 

              Ipi/nivo combo – response rate about 50-60%. Because of ipi mostly…the side effects are more frequent than with nivo alone.

Radiation – once thought not to be effective in melanoma….and alone it's not that great. But….combined with immunotherapy (whether we are talking SRS, ablation) the combo has a synergistic effect that is better than either alone.

There are many new drugs in trial….and even more trials with various combo's….that are very promising. However, trials are not for the faint of heart….and there are lots of good available options today. But, looking at trial options never hurts. Phase 1 = really just to determine dosing….how much does it take to get a result and how much do patients find intolerable. Usually not previously tested (or only a small bit) so you might grow 3 heads, have no benefit, or be cured…..but everybody gets the drug. Phase 3 and 4 trials – more data available lets folks know about effects…positive and negative….but now you are dealing with comparative arms…which may give you nothing or a lesser med. Some of these have cross over options…some do not. All trials have reasons for which they can kick you off. Read the fine print!

Sooooo…lots to learn. As Brian was sweet to note….there is even more intel on my blog….and you can search for the info that interests you and your mom. Lots of folks can give you good info on this forum as well. Hang in there. I wish you and your mom well.  Celeste