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Hi Annie,

Sorry to hear about your diagnosis – but I don't know – you just sound like a warrior with a great positive energy. Keep that and you'll do great.

Going through this with my husband, there are two constant themes I've heard: one, go to a melanoma center if you can. The first hospital we were at called my husband's case "unique and interesting." We didn't want to be unique and interesting – we wanted to see an oncologist who said – "I've seen this before, hundreds of times, and these are the options we have."

Second theme: interferon (at least in our oncologist's words) is the lowest on the totem pole option to consider – though I have read good reports in these forums. That year of treatment you go through is a tough one physically. Her positioning was, in my hubby's case, you're strong now. Let's keep you as strong as we can for as long as we can so if/when this melanoma comes back (and it did) … you are stronger to fight it. 

Finally, I'd say just follow your gut. You want to have faith and confidence in your doctor/hospital. 

Good luck with your journey. I wish you the best. Please keep us all posted.

Kimberly

Hi Annie,

Sorry to hear about your diagnosis – but I don't know – you just sound like a warrior with a great positive energy. Keep that and you'll do great.

Going through this with my husband, there are two constant themes I've heard: one, go to a melanoma center if you can. The first hospital we were at called my husband's case "unique and interesting." We didn't want to be unique and interesting – we wanted to see an oncologist who said – "I've seen this before, hundreds of times, and these are the options we have."

Second theme: interferon (at least in our oncologist's words) is the lowest on the totem pole option to consider – though I have read good reports in these forums. That year of treatment you go through is a tough one physically. Her positioning was, in my hubby's case, you're strong now. Let's keep you as strong as we can for as long as we can so if/when this melanoma comes back (and it did) … you are stronger to fight it. 

Finally, I'd say just follow your gut. You want to have faith and confidence in your doctor/hospital. 

Good luck with your journey. I wish you the best. Please keep us all posted.

Kimberly

Hi Annie,

Sorry to hear about your diagnosis – but I don't know – you just sound like a warrior with a great positive energy. Keep that and you'll do great.

Going through this with my husband, there are two constant themes I've heard: one, go to a melanoma center if you can. The first hospital we were at called my husband's case "unique and interesting." We didn't want to be unique and interesting – we wanted to see an oncologist who said – "I've seen this before, hundreds of times, and these are the options we have."

Second theme: interferon (at least in our oncologist's words) is the lowest on the totem pole option to consider – though I have read good reports in these forums. That year of treatment you go through is a tough one physically. Her positioning was, in my hubby's case, you're strong now. Let's keep you as strong as we can for as long as we can so if/when this melanoma comes back (and it did) … you are stronger to fight it. 

Finally, I'd say just follow your gut. You want to have faith and confidence in your doctor/hospital. 

Good luck with your journey. I wish you the best. Please keep us all posted.

Kimberly

Sorry you had to join us but this really is the best place for answers during such a scary time.

First, most importantly, are you see a melanoma specialist?  That is the most important detail right now, in my opinion.  There are many trials and certainly a lot more options than there used to be.  Hopefully your ride will be a smooth one.

Sorry you had to join us but this really is the best place for answers during such a scary time.

First, most importantly, are you see a melanoma specialist?  That is the most important detail right now, in my opinion.  There are many trials and certainly a lot more options than there used to be.  Hopefully your ride will be a smooth one.

Sorry you had to join us but this really is the best place for answers during such a scary time.

First, most importantly, are you see a melanoma specialist?  That is the most important detail right now, in my opinion.  There are many trials and certainly a lot more options than there used to be.  Hopefully your ride will be a smooth one.

Fortunately you have several from which to choose:

* Abramson Cancer Center at Univerity of Pennsylvania, Philadelphia

* Fox Chase Cancer Center, Philadelphia

* Kimmel Cancer Center, Thomas Jefferson University, Philadelphia

* St. Luke's Cancer Center, Bethlehem

Sounds like St. Luke's may be the closest.

Hi Annie – me again. We are in Northeast Pa. as well and are getting treatment at Jefferson Hospital with Dr. Kendra Feeney, a melanoma specialist. We think the world of her and the whole Jefferson organization. A friend of mine – her husband – is getting treatment for his Stage IV melanoma at Lehigh Valley Health Network with Dr. Suresh Nair. I don't believe he's a specialist in melanoma but she and her husband have been very happy with their treatment plan. Good luck with your research – you'll know when it's the right doctor/place. Take care.

To Linny's list I would add: Sloan Kettering in NYC, Dana Farber in Boston, and even Roswell Park in Buffalo. 

These 3 are definitely more of a drive, but worth keeping on your list for the possibilities of trials, etc. I'm not very familiar with the centers in PA or the doctors but I'm in central NY (fingerlakes region) so I'm well acquainted with having to travel to find a specialist. I've been quite happy with Roswell Park in Buffalo (and I have a medical background, so I'm picky). Unfortunately with my last relapse when we went looking for trials they didn't have anything that fit me so I opted for Dana Farber in Boston, which we were also pleased with. Unfortunately we found out the day before our appointment in Boston that I would not be eligible for trials due to the appearance of brain mets, but we kept the appointment anyway and were pleased with the facility and results. Sloan Kettering is a huge center with many trials happening, but my other doctors (local and speciailsts) felt that Dana Farber was actually better for melanoma, which is why we went there instead but do keep them in mind if you're leaning towards trials as they often have several open at a given time.

I'm 31 and was first diagnosed 2 1/2 years ago. My primary was on my back, but I also had a positive sentinal node biopsy followed by full axilarry resection. Having a positive node puts you at Stage III at least B (possibly C, but you won't know until you get your pathology results). That's exactly the stage I was when I was diagnosed- III B. All my other scans (CT, MRI, PET) were clear. I was also presented with the option of doing interferon. I will tell you that it's a very personal choice whether to do the therapy or not. Try not to let anyone TELL you what you should do. The evidence isn't necessarily that great that it has a benefit, but it isn't that strong that it doesn't either. Many people at stage III choose not to do interferon and don't progress, but many do progress. On the other hand many people that do interferon also don't progress, while some do. It is currently the only FDA approved therapy for stage III patients, but there are a few trials happening looking at other therapies (including Yervoy and some vaccines). 

I was presented with the information and the option of whether or not to do a year of interferon. I chose to do it. The bottom line is that you'll never know if it worked or not if you don't progress, but for me I didn't want to look back in the event that I did progress and wonder whether the interferon would have prevented it. It wasn't an easy year, but after the first month of high dose it wasn't that bad either. It's different for everyone, I tolerated it pretty well and functioned mostly normally (thought I didn't have the energy I normally did). Again, it's not wrong in any way not to do it, but it must be YOUR decision- don't let people tell you what to do. You might want to discuss trials for stage III patients with your specialist once you find one before making any decisions (you wont' be able to start anything anyway for a few weeks while you heal from surgery). Just think about it and make the decision that makes YOU the most comfortable. 

Unfortunately I did progress just a few months after finishing the interferon, went through a full course (3 cycles) of IL2 for stage 4 melanoma, which seemed to be working, only to progress again after just one week home from the IL2. Having been denied entrance into trials due to the discovery of 7 brain mets in June I've now completed 3 weeks of whole brain radiation (too many mets to qualify for the targeted radiation treatments) which started at the same time as Yervoy. I'm now half way through the 4 doses of Yervoy and my oncologist tacked on self injections of GM-CSF based on some preliminary data released from an ongoing study indicating it could help reduce side effects and make the response to Yervoy more robust and longer lasting. Had some trouble convincing my insurance to go along with it, but that's my current combo. If you get yourself a good team that will be proactive and fight for you it really makes a world of difference. I will say that I don't think my relapse had anything to do with the interferon and I definitely was not any weaker physically or with my immune system because of interferon. On the contrary I was probably the healthiest I'd been in my adult life- running 5 miles a day, etc.

So that's a lot of babbling to say- get yourself a good team that you are comfortable with and conifidant about, weigh your options and make the right decision for YOU. Once you do that try not to second guess. Trust that the decision you made is the right one and know your options for the future. 

Good luck to you and all the best.

-Eva

To Linny's list I would add: Sloan Kettering in NYC, Dana Farber in Boston, and even Roswell Park in Buffalo. 

These 3 are definitely more of a drive, but worth keeping on your list for the possibilities of trials, etc. I'm not very familiar with the centers in PA or the doctors but I'm in central NY (fingerlakes region) so I'm well acquainted with having to travel to find a specialist. I've been quite happy with Roswell Park in Buffalo (and I have a medical background, so I'm picky). Unfortunately with my last relapse when we went looking for trials they didn't have anything that fit me so I opted for Dana Farber in Boston, which we were also pleased with. Unfortunately we found out the day before our appointment in Boston that I would not be eligible for trials due to the appearance of brain mets, but we kept the appointment anyway and were pleased with the facility and results. Sloan Kettering is a huge center with many trials happening, but my other doctors (local and speciailsts) felt that Dana Farber was actually better for melanoma, which is why we went there instead but do keep them in mind if you're leaning towards trials as they often have several open at a given time.

I'm 31 and was first diagnosed 2 1/2 years ago. My primary was on my back, but I also had a positive sentinal node biopsy followed by full axilarry resection. Having a positive node puts you at Stage III at least B (possibly C, but you won't know until you get your pathology results). That's exactly the stage I was when I was diagnosed- III B. All my other scans (CT, MRI, PET) were clear. I was also presented with the option of doing interferon. I will tell you that it's a very personal choice whether to do the therapy or not. Try not to let anyone TELL you what you should do. The evidence isn't necessarily that great that it has a benefit, but it isn't that strong that it doesn't either. Many people at stage III choose not to do interferon and don't progress, but many do progress. On the other hand many people that do interferon also don't progress, while some do. It is currently the only FDA approved therapy for stage III patients, but there are a few trials happening looking at other therapies (including Yervoy and some vaccines). 

I was presented with the information and the option of whether or not to do a year of interferon. I chose to do it. The bottom line is that you'll never know if it worked or not if you don't progress, but for me I didn't want to look back in the event that I did progress and wonder whether the interferon would have prevented it. It wasn't an easy year, but after the first month of high dose it wasn't that bad either. It's different for everyone, I tolerated it pretty well and functioned mostly normally (thought I didn't have the energy I normally did). Again, it's not wrong in any way not to do it, but it must be YOUR decision- don't let people tell you what to do. You might want to discuss trials for stage III patients with your specialist once you find one before making any decisions (you wont' be able to start anything anyway for a few weeks while you heal from surgery). Just think about it and make the decision that makes YOU the most comfortable. 

Unfortunately I did progress just a few months after finishing the interferon, went through a full course (3 cycles) of IL2 for stage 4 melanoma, which seemed to be working, only to progress again after just one week home from the IL2. Having been denied entrance into trials due to the discovery of 7 brain mets in June I've now completed 3 weeks of whole brain radiation (too many mets to qualify for the targeted radiation treatments) which started at the same time as Yervoy. I'm now half way through the 4 doses of Yervoy and my oncologist tacked on self injections of GM-CSF based on some preliminary data released from an ongoing study indicating it could help reduce side effects and make the response to Yervoy more robust and longer lasting. Had some trouble convincing my insurance to go along with it, but that's my current combo. If you get yourself a good team that will be proactive and fight for you it really makes a world of difference. I will say that I don't think my relapse had anything to do with the interferon and I definitely was not any weaker physically or with my immune system because of interferon. On the contrary I was probably the healthiest I'd been in my adult life- running 5 miles a day, etc.

So that's a lot of babbling to say- get yourself a good team that you are comfortable with and conifidant about, weigh your options and make the right decision for YOU. Once you do that try not to second guess. Trust that the decision you made is the right one and know your options for the future. 

Good luck to you and all the best.

-Eva

To Linny's list I would add: Sloan Kettering in NYC, Dana Farber in Boston, and even Roswell Park in Buffalo. 

These 3 are definitely more of a drive, but worth keeping on your list for the possibilities of trials, etc. I'm not very familiar with the centers in PA or the doctors but I'm in central NY (fingerlakes region) so I'm well acquainted with having to travel to find a specialist. I've been quite happy with Roswell Park in Buffalo (and I have a medical background, so I'm picky). Unfortunately with my last relapse when we went looking for trials they didn't have anything that fit me so I opted for Dana Farber in Boston, which we were also pleased with. Unfortunately we found out the day before our appointment in Boston that I would not be eligible for trials due to the appearance of brain mets, but we kept the appointment anyway and were pleased with the facility and results. Sloan Kettering is a huge center with many trials happening, but my other doctors (local and speciailsts) felt that Dana Farber was actually better for melanoma, which is why we went there instead but do keep them in mind if you're leaning towards trials as they often have several open at a given time.

I'm 31 and was first diagnosed 2 1/2 years ago. My primary was on my back, but I also had a positive sentinal node biopsy followed by full axilarry resection. Having a positive node puts you at Stage III at least B (possibly C, but you won't know until you get your pathology results). That's exactly the stage I was when I was diagnosed- III B. All my other scans (CT, MRI, PET) were clear. I was also presented with the option of doing interferon. I will tell you that it's a very personal choice whether to do the therapy or not. Try not to let anyone TELL you what you should do. The evidence isn't necessarily that great that it has a benefit, but it isn't that strong that it doesn't either. Many people at stage III choose not to do interferon and don't progress, but many do progress. On the other hand many people that do interferon also don't progress, while some do. It is currently the only FDA approved therapy for stage III patients, but there are a few trials happening looking at other therapies (including Yervoy and some vaccines). 

I was presented with the information and the option of whether or not to do a year of interferon. I chose to do it. The bottom line is that you'll never know if it worked or not if you don't progress, but for me I didn't want to look back in the event that I did progress and wonder whether the interferon would have prevented it. It wasn't an easy year, but after the first month of high dose it wasn't that bad either. It's different for everyone, I tolerated it pretty well and functioned mostly normally (thought I didn't have the energy I normally did). Again, it's not wrong in any way not to do it, but it must be YOUR decision- don't let people tell you what to do. You might want to discuss trials for stage III patients with your specialist once you find one before making any decisions (you wont' be able to start anything anyway for a few weeks while you heal from surgery). Just think about it and make the decision that makes YOU the most comfortable. 

Unfortunately I did progress just a few months after finishing the interferon, went through a full course (3 cycles) of IL2 for stage 4 melanoma, which seemed to be working, only to progress again after just one week home from the IL2. Having been denied entrance into trials due to the discovery of 7 brain mets in June I've now completed 3 weeks of whole brain radiation (too many mets to qualify for the targeted radiation treatments) which started at the same time as Yervoy. I'm now half way through the 4 doses of Yervoy and my oncologist tacked on self injections of GM-CSF based on some preliminary data released from an ongoing study indicating it could help reduce side effects and make the response to Yervoy more robust and longer lasting. Had some trouble convincing my insurance to go along with it, but that's my current combo. If you get yourself a good team that will be proactive and fight for you it really makes a world of difference. I will say that I don't think my relapse had anything to do with the interferon and I definitely was not any weaker physically or with my immune system because of interferon. On the contrary I was probably the healthiest I'd been in my adult life- running 5 miles a day, etc.

So that's a lot of babbling to say- get yourself a good team that you are comfortable with and conifidant about, weigh your options and make the right decision for YOU. Once you do that try not to second guess. Trust that the decision you made is the right one and know your options for the future. 

Good luck to you and all the best.

-Eva

Great post, Eva. Clear, informative, and comforting. I hope that everyone who is newly diagnosed, especially those diagnosed at Stage III, will read it.

Annie,

Eva did a great job of presenting the interferon piece.  I also did interferon and also progressed.  It was a tough year but manageable for me but like Eva said it is different for everyone.  Even though I progressed I still don't regret my decision.

There's a few things you might want to look at.  You can search for clinical trials on clinicaltrials.gov.  You can adjust the search criteria to try and narrow it down to your specific case.  Also this site has a service where they will help you find clinical trials that you are eligible for.  If you can't find it PM me and I'll point you in the right direction.  I'm sure there are others but I only know of one clinical trial right now for stage III NED patients and that is the IPI vs. Interferon trial.  That might be one worth careful consideration in hope that you would get the IPI arm.  This forum is one of the best out there for information.  Another good forum is the Melanoma International Foundation.  Although this board is more active, the MIF board is a little better organized and you can find patients in your same situation.

Best of luck Annie.  Stay positive.

Brian

Hi Annie,

I'd just like to repost and apologize for the bluntness of my post. I'm looking at it now thinking I wish I could delete it. Initially, we had decided on interferon too. And as Eva's beautifully written post said, it's a very personal decision. You will find the answers. Sending you positive energy.

Kimberly

Look at the studies that involve Curcumin, aspirin and broccolli as well for melanoma patients.

Fortunately you have several from which to choose:

* Abramson Cancer Center at Univerity of Pennsylvania, Philadelphia

* Fox Chase Cancer Center, Philadelphia

* Kimmel Cancer Center, Thomas Jefferson University, Philadelphia

* St. Luke's Cancer Center, Bethlehem

Sounds like St. Luke's may be the closest.

Fortunately you have several from which to choose:

* Abramson Cancer Center at Univerity of Pennsylvania, Philadelphia

* Fox Chase Cancer Center, Philadelphia

* Kimmel Cancer Center, Thomas Jefferson University, Philadelphia

* St. Luke's Cancer Center, Bethlehem

Sounds like St. Luke's may be the closest.

Hi Annie – me again. We are in Northeast Pa. as well and are getting treatment at Jefferson Hospital with Dr. Kendra Feeney, a melanoma specialist. We think the world of her and the whole Jefferson organization. A friend of mine – her husband – is getting treatment for his Stage IV melanoma at Lehigh Valley Health Network with Dr. Suresh Nair. I don't believe he's a specialist in melanoma but she and her husband have been very happy with their treatment plan. Good luck with your research – you'll know when it's the right doctor/place. Take care.

Hi Annie – me again. We are in Northeast Pa. as well and are getting treatment at Jefferson Hospital with Dr. Kendra Feeney, a melanoma specialist. We think the world of her and the whole Jefferson organization. A friend of mine – her husband – is getting treatment for his Stage IV melanoma at Lehigh Valley Health Network with Dr. Suresh Nair. I don't believe he's a specialist in melanoma but she and her husband have been very happy with their treatment plan. Good luck with your research – you'll know when it's the right doctor/place. Take care.

Great post, Eva. Clear, informative, and comforting. I hope that everyone who is newly diagnosed, especially those diagnosed at Stage III, will read it.

Great post, Eva. Clear, informative, and comforting. I hope that everyone who is newly diagnosed, especially those diagnosed at Stage III, will read it.

Annie,

Eva did a great job of presenting the interferon piece.  I also did interferon and also progressed.  It was a tough year but manageable for me but like Eva said it is different for everyone.  Even though I progressed I still don't regret my decision.

There's a few things you might want to look at.  You can search for clinical trials on clinicaltrials.gov.  You can adjust the search criteria to try and narrow it down to your specific case.  Also this site has a service where they will help you find clinical trials that you are eligible for.  If you can't find it PM me and I'll point you in the right direction.  I'm sure there are others but I only know of one clinical trial right now for stage III NED patients and that is the IPI vs. Interferon trial.  That might be one worth careful consideration in hope that you would get the IPI arm.  This forum is one of the best out there for information.  Another good forum is the Melanoma International Foundation.  Although this board is more active, the MIF board is a little better organized and you can find patients in your same situation.

Best of luck Annie.  Stay positive.

Brian

Annie,

Eva did a great job of presenting the interferon piece.  I also did interferon and also progressed.  It was a tough year but manageable for me but like Eva said it is different for everyone.  Even though I progressed I still don't regret my decision.

There's a few things you might want to look at.  You can search for clinical trials on clinicaltrials.gov.  You can adjust the search criteria to try and narrow it down to your specific case.  Also this site has a service where they will help you find clinical trials that you are eligible for.  If you can't find it PM me and I'll point you in the right direction.  I'm sure there are others but I only know of one clinical trial right now for stage III NED patients and that is the IPI vs. Interferon trial.  That might be one worth careful consideration in hope that you would get the IPI arm.  This forum is one of the best out there for information.  Another good forum is the Melanoma International Foundation.  Although this board is more active, the MIF board is a little better organized and you can find patients in your same situation.

Best of luck Annie.  Stay positive.

Brian

Look at the studies that involve Curcumin, aspirin and broccolli as well for melanoma patients.

Look at the studies that involve Curcumin, aspirin and broccolli as well for melanoma patients.