New to the Site

Greetings TMM,

Welcome to the club where no one wants to be a member.  This is a very supportive forum and loaded with folks who have been there and done that.  Some others are likely to chime in with the strategy regarding Yervoy vs watch and wait.  But the subject of port or no port (for those who can expect to have multiple, and regular infusions and boodwork) has been discussed extensively and an overwhelming majority, including myself will say the port is fabulous, and are thankful they have it.  The procedure is relatively quick, easy, and painless.  When and if the day comes that you no longer need it it can be removed.  There is pretty much no downside beside a noticeable lump when your shirt is off.

Gary

Greetings TMM,

Welcome to the club where no one wants to be a member.  This is a very supportive forum and loaded with folks who have been there and done that.  Some others are likely to chime in with the strategy regarding Yervoy vs watch and wait.  But the subject of port or no port (for those who can expect to have multiple, and regular infusions and boodwork) has been discussed extensively and an overwhelming majority, including myself will say the port is fabulous, and are thankful they have it.  The procedure is relatively quick, easy, and painless.  When and if the day comes that you no longer need it it can be removed.  There is pretty much no downside beside a noticeable lump when your shirt is off.

Gary

Greetings TMM,

Welcome to the club where no one wants to be a member.  This is a very supportive forum and loaded with folks who have been there and done that.  Some others are likely to chime in with the strategy regarding Yervoy vs watch and wait.  But the subject of port or no port (for those who can expect to have multiple, and regular infusions and boodwork) has been discussed extensively and an overwhelming majority, including myself will say the port is fabulous, and are thankful they have it.  The procedure is relatively quick, easy, and painless.  When and if the day comes that you no longer need it it can be removed.  There is pretty much no downside beside a noticeable lump when your shirt is off.

Gary

Hi TMM, if I understand your situation correctly you are almost two years out from having a CLND and you have had no issue other than being carefull with moles of concern!!!! For a medical oncologist to tell you that you would tolerate Yervoy treatments at the dose that it is approved for stage 3, with minimal side effects is concerning. Take a look at this video from Dr. Jason Luke, at about the 27min mark he starts to talk about Ipi and the data from the  trial EORTC 18071 from Europe that was used  to get it's approval. https://www.youtube.com/watch?v=eofW8d4J6sI&feature=youtu.be    . I would also read the actually study results where 52% of the patients didn't make it through the 4 treatments due to toxicity at the grade 3/4 and there were 5 deaths recorded!!! Wishing you the best in making your decision.Ed   http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract  

Hi TMM, if I understand your situation correctly you are almost two years out from having a CLND and you have had no issue other than being carefull with moles of concern!!!! For a medical oncologist to tell you that you would tolerate Yervoy treatments at the dose that it is approved for stage 3, with minimal side effects is concerning. Take a look at this video from Dr. Jason Luke, at about the 27min mark he starts to talk about Ipi and the data from the  trial EORTC 18071 from Europe that was used  to get it's approval. https://www.youtube.com/watch?v=eofW8d4J6sI&feature=youtu.be    . I would also read the actually study results where 52% of the patients didn't make it through the 4 treatments due to toxicity at the grade 3/4 and there were 5 deaths recorded!!! Wishing you the best in making your decision.Ed   http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract  

Hi TMM, if I understand your situation correctly you are almost two years out from having a CLND and you have had no issue other than being carefull with moles of concern!!!! For a medical oncologist to tell you that you would tolerate Yervoy treatments at the dose that it is approved for stage 3, with minimal side effects is concerning. Take a look at this video from Dr. Jason Luke, at about the 27min mark he starts to talk about Ipi and the data from the  trial EORTC 18071 from Europe that was used  to get it's approval. https://www.youtube.com/watch?v=eofW8d4J6sI&feature=youtu.be    . I would also read the actually study results where 52% of the patients didn't make it through the 4 treatments due to toxicity at the grade 3/4 and there were 5 deaths recorded!!! Wishing you the best in making your decision.Ed   http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(15)70122-1/abstract  

Hi sleept23,

My husband was diagnosed initially in May 2008 stage 3c with no primary. He noticed a lump under his right jaw line which turned out to be melanoma in the lymph nodes of his neck. Surgery got it all and under strong advise from his surgical oncologist and agreement with his medical oncologist he underwent a full long, hard 12 month treatment with interferon.  Yes…he made it through the full 12 months but it was TOUGH. He did have a port but only for the first month of intereferon since that was a rigorous schedule of IV infusions and then had it removed. Port placement and removal is a quick out patient procedure.

Fast forward to November 2013 and a diagnosis of stage 4 mets to lung and treatment with the option of 4 doses of Yervoy. He did not have a port for this and did fine. I understand the regimen for adjuvant stage 3 is different so I can't really help there. Others I'm sure will be able to give you an opinion on this. Really I think it depends on the frequency of the regimen, the condition of  your veins, easy vein access, and how comfortable you are with it.

Your medical oncologist office or the cancer center where you go may (should) have a Patient Navigator or someone in a position similar to this that helps patients find ways to get their treatments, in particular the medicines. They are a source of financial assistance. Bristol Myers Squibb manufactures Yervoy and has a copay assistance program.   http://www.bms.com  (sorry I couldn't get the whole link to paste – google "Yervoy copay assistance" but make sure it's Bristol Myers Squibb site).

Do your research and keep your knowledge level up there about this disease and what all is available to you out there. Good luck to you and your wife in your vigilance against this disease!

Hi sleept23,

My husband was diagnosed initially in May 2008 stage 3c with no primary. He noticed a lump under his right jaw line which turned out to be melanoma in the lymph nodes of his neck. Surgery got it all and under strong advise from his surgical oncologist and agreement with his medical oncologist he underwent a full long, hard 12 month treatment with interferon.  Yes…he made it through the full 12 months but it was TOUGH. He did have a port but only for the first month of intereferon since that was a rigorous schedule of IV infusions and then had it removed. Port placement and removal is a quick out patient procedure.

Fast forward to November 2013 and a diagnosis of stage 4 mets to lung and treatment with the option of 4 doses of Yervoy. He did not have a port for this and did fine. I understand the regimen for adjuvant stage 3 is different so I can't really help there. Others I'm sure will be able to give you an opinion on this. Really I think it depends on the frequency of the regimen, the condition of  your veins, easy vein access, and how comfortable you are with it.

Your medical oncologist office or the cancer center where you go may (should) have a Patient Navigator or someone in a position similar to this that helps patients find ways to get their treatments, in particular the medicines. They are a source of financial assistance. Bristol Myers Squibb manufactures Yervoy and has a copay assistance program.   http://www.bms.com  (sorry I couldn't get the whole link to paste – google "Yervoy copay assistance" but make sure it's Bristol Myers Squibb site).

Do your research and keep your knowledge level up there about this disease and what all is available to you out there. Good luck to you and your wife in your vigilance against this disease!

Hi sleept23,

My husband was diagnosed initially in May 2008 stage 3c with no primary. He noticed a lump under his right jaw line which turned out to be melanoma in the lymph nodes of his neck. Surgery got it all and under strong advise from his surgical oncologist and agreement with his medical oncologist he underwent a full long, hard 12 month treatment with interferon.  Yes…he made it through the full 12 months but it was TOUGH. He did have a port but only for the first month of intereferon since that was a rigorous schedule of IV infusions and then had it removed. Port placement and removal is a quick out patient procedure.

Fast forward to November 2013 and a diagnosis of stage 4 mets to lung and treatment with the option of 4 doses of Yervoy. He did not have a port for this and did fine. I understand the regimen for adjuvant stage 3 is different so I can't really help there. Others I'm sure will be able to give you an opinion on this. Really I think it depends on the frequency of the regimen, the condition of  your veins, easy vein access, and how comfortable you are with it.

Your medical oncologist office or the cancer center where you go may (should) have a Patient Navigator or someone in a position similar to this that helps patients find ways to get their treatments, in particular the medicines. They are a source of financial assistance. Bristol Myers Squibb manufactures Yervoy and has a copay assistance program.   http://www.bms.com  (sorry I couldn't get the whole link to paste – google "Yervoy copay assistance" but make sure it's Bristol Myers Squibb site).

Do your research and keep your knowledge level up there about this disease and what all is available to you out there. Good luck to you and your wife in your vigilance against this disease!

As far as assistance for Yervoy, yes they have a wonderful program that you should ask your doctor to help sign you up for. You have to fill out the paperwork before you start treatment. Basically, I signed a paper that gives BMS access to all of my melanoma treatment from the beginning of my Yervoy journey until long after, to help give more data on effectiveness and what not. In turn, I get Yervoy for free. Someone from BMS called me a couple of weeks ago just to make sure I haven't paid for the drug at all. Wonderful deal.

I did not get a port. Most only go through the 4 main infusions. You get blood drawn the morning of infusion. So as far as getting stuck with needles, probably around 8 times, 4 for the blood, 4 for the infusions. And then some follow up blood work might happen after, not sure, I am doing maintanence doses so I continue to get infusions for the rest of the year. But, I have seen patients with ports, and they certainly seem to love them. If I didn't have "perfect veins" (that's what the nurses like to call them) then I would probably look into getting a port just to make it easier.

Hope all goes well for you,

As far as assistance for Yervoy, yes they have a wonderful program that you should ask your doctor to help sign you up for. You have to fill out the paperwork before you start treatment. Basically, I signed a paper that gives BMS access to all of my melanoma treatment from the beginning of my Yervoy journey until long after, to help give more data on effectiveness and what not. In turn, I get Yervoy for free. Someone from BMS called me a couple of weeks ago just to make sure I haven't paid for the drug at all. Wonderful deal.

I did not get a port. Most only go through the 4 main infusions. You get blood drawn the morning of infusion. So as far as getting stuck with needles, probably around 8 times, 4 for the blood, 4 for the infusions. And then some follow up blood work might happen after, not sure, I am doing maintanence doses so I continue to get infusions for the rest of the year. But, I have seen patients with ports, and they certainly seem to love them. If I didn't have "perfect veins" (that's what the nurses like to call them) then I would probably look into getting a port just to make it easier.

Hope all goes well for you,

As far as assistance for Yervoy, yes they have a wonderful program that you should ask your doctor to help sign you up for. You have to fill out the paperwork before you start treatment. Basically, I signed a paper that gives BMS access to all of my melanoma treatment from the beginning of my Yervoy journey until long after, to help give more data on effectiveness and what not. In turn, I get Yervoy for free. Someone from BMS called me a couple of weeks ago just to make sure I haven't paid for the drug at all. Wonderful deal.

I did not get a port. Most only go through the 4 main infusions. You get blood drawn the morning of infusion. So as far as getting stuck with needles, probably around 8 times, 4 for the blood, 4 for the infusions. And then some follow up blood work might happen after, not sure, I am doing maintanence doses so I continue to get infusions for the rest of the year. But, I have seen patients with ports, and they certainly seem to love them. If I didn't have "perfect veins" (that's what the nurses like to call them) then I would probably look into getting a port just to make it easier.

Hope all goes well for you,