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I had the Yervoy treatment right after it was approved March 2011.   I had three treatments between May 2011 and July 2011.  After the third treatment I too developed severe colitis and had to be hospitalized for eight days.  Since that time I have not been able to take the Yervoy treatments.  I asked the doctor when I was in the hospital if I could still take the last treatment even though I had developed colitis.  Her response was that they couldn't kill me to cure me. 

Since that time my regular oncologist told me I am ineligible to have further Yervoy treatments since I had such a bad side effect of colitis and since I was on steroids for over four months to get the colitis under control I am not eligible to take the PD1 treatments because PD1 has a lot of the same make up as the Yervoy treatment and colitis is one of the big side effects for PD1. 

I haven't treated since July 2011 other than radiation to my head.  I am currently under the wait and see program which is very nerve racking.  I feel the Yervoy did do some good and wish I could have finished the treatments.  Some of my tumors have resolved and some have disappeared from the Yervoy treatment.  However, I still do have other areas that have been increasing in size.

I hope this answer is in line with what your doctor will tell you also.  There is also a lot of treatments available if your wife has the BRAF mutation which I do not have.

Good luck in your journey. 

Karen in Florida

I had the Yervoy treatment right after it was approved March 2011.   I had three treatments between May 2011 and July 2011.  After the third treatment I too developed severe colitis and had to be hospitalized for eight days.  Since that time I have not been able to take the Yervoy treatments.  I asked the doctor when I was in the hospital if I could still take the last treatment even though I had developed colitis.  Her response was that they couldn't kill me to cure me. 

Since that time my regular oncologist told me I am ineligible to have further Yervoy treatments since I had such a bad side effect of colitis and since I was on steroids for over four months to get the colitis under control I am not eligible to take the PD1 treatments because PD1 has a lot of the same make up as the Yervoy treatment and colitis is one of the big side effects for PD1. 

I haven't treated since July 2011 other than radiation to my head.  I am currently under the wait and see program which is very nerve racking.  I feel the Yervoy did do some good and wish I could have finished the treatments.  Some of my tumors have resolved and some have disappeared from the Yervoy treatment.  However, I still do have other areas that have been increasing in size.

I hope this answer is in line with what your doctor will tell you also.  There is also a lot of treatments available if your wife has the BRAF mutation which I do not have.

Good luck in your journey. 

Karen in Florida

I had the Yervoy treatment right after it was approved March 2011.   I had three treatments between May 2011 and July 2011.  After the third treatment I too developed severe colitis and had to be hospitalized for eight days.  Since that time I have not been able to take the Yervoy treatments.  I asked the doctor when I was in the hospital if I could still take the last treatment even though I had developed colitis.  Her response was that they couldn't kill me to cure me. 

Since that time my regular oncologist told me I am ineligible to have further Yervoy treatments since I had such a bad side effect of colitis and since I was on steroids for over four months to get the colitis under control I am not eligible to take the PD1 treatments because PD1 has a lot of the same make up as the Yervoy treatment and colitis is one of the big side effects for PD1. 

I haven't treated since July 2011 other than radiation to my head.  I am currently under the wait and see program which is very nerve racking.  I feel the Yervoy did do some good and wish I could have finished the treatments.  Some of my tumors have resolved and some have disappeared from the Yervoy treatment.  However, I still do have other areas that have been increasing in size.

I hope this answer is in line with what your doctor will tell you also.  There is also a lot of treatments available if your wife has the BRAF mutation which I do not have.

Good luck in your journey. 

Karen in Florida

I have the nodular mel also.  I had a mole removed from my back in Dec 2010.  I had a large margin excised around the mole and also the sentinel test to see if the mel had spread to my lymph nodes.  They both showed negative for melanoma.  For two years I went to my dermatologist every three to four months and also twice a year to my surgeon at Moffitt.  They didn't give me any scans they were just looking for the reoccurence on the external when the melanoma was growing on the internal without any evidence of moles.  I felt fine and had no idea I had this disease.  Two years later I developed a lump under my arm and one on my waist on the right side.  They both came back to be nodular melanoma.

Just make sure they give you an MRI scan and a PET scan to see if you have it anywhere else in your body.  Don't just let them assume you only have the melanoma on your ear.  If I would have had scans I wouldn't have been a Stage IV two years later.

They have a lot of treatments that are successful.  Yervoy is one that has been approved.  There are a lot of clinical trials and treatments if you have the BRAF mutation.  I am not BRAF positive so I am limited on treatments.  I took Yervoy and could only take three of the four treatments before developing colitis which is one of the bad side effects and they will not give me anymore Yervoy treatments.  I still feel even though I had a bad reaction I think the Yervoy helped me a great deal as some of my tumors have resolved. It has been two years since I found out I was Stage IV and I am still living and feeling pretty good.  It is easy to be paranoid though and wonder how long I can remain feeling good.

I know it is devestating at first to hear the words melanoma but it doesn't have to be a death sentence.  There are a lot of people on this site that are years of NED (no evidence of disease) after treatment.  You are young and strong so you should be able to take the treatments with no problem.  They have come along way with treatments for melanoma. 

I don't want to give you too much to think about but want to reiterate the importance of them giving you scans periodically.  I  wish you the best and try not to panic too much there is help out there for you.  Make sure you are seeing a doctor that is well knowledged in melanoma.  Take care.

Karen in FL

I have the nodular mel also.  I had a mole removed from my back in Dec 2010.  I had a large margin excised around the mole and also the sentinel test to see if the mel had spread to my lymph nodes.  They both showed negative for melanoma.  For two years I went to my dermatologist every three to four months and also twice a year to my surgeon at Moffitt.  They didn't give me any scans they were just looking for the reoccurence on the external when the melanoma was growing on the internal without any evidence of moles.  I felt fine and had no idea I had this disease.  Two years later I developed a lump under my arm and one on my waist on the right side.  They both came back to be nodular melanoma.

Just make sure they give you an MRI scan and a PET scan to see if you have it anywhere else in your body.  Don't just let them assume you only have the melanoma on your ear.  If I would have had scans I wouldn't have been a Stage IV two years later.

They have a lot of treatments that are successful.  Yervoy is one that has been approved.  There are a lot of clinical trials and treatments if you have the BRAF mutation.  I am not BRAF positive so I am limited on treatments.  I took Yervoy and could only take three of the four treatments before developing colitis which is one of the bad side effects and they will not give me anymore Yervoy treatments.  I still feel even though I had a bad reaction I think the Yervoy helped me a great deal as some of my tumors have resolved. It has been two years since I found out I was Stage IV and I am still living and feeling pretty good.  It is easy to be paranoid though and wonder how long I can remain feeling good.

I know it is devestating at first to hear the words melanoma but it doesn't have to be a death sentence.  There are a lot of people on this site that are years of NED (no evidence of disease) after treatment.  You are young and strong so you should be able to take the treatments with no problem.  They have come along way with treatments for melanoma. 

I don't want to give you too much to think about but want to reiterate the importance of them giving you scans periodically.  I  wish you the best and try not to panic too much there is help out there for you.  Make sure you are seeing a doctor that is well knowledged in melanoma.  Take care.

Karen in FL

I have the nodular mel also.  I had a mole removed from my back in Dec 2010.  I had a large margin excised around the mole and also the sentinel test to see if the mel had spread to my lymph nodes.  They both showed negative for melanoma.  For two years I went to my dermatologist every three to four months and also twice a year to my surgeon at Moffitt.  They didn't give me any scans they were just looking for the reoccurence on the external when the melanoma was growing on the internal without any evidence of moles.  I felt fine and had no idea I had this disease.  Two years later I developed a lump under my arm and one on my waist on the right side.  They both came back to be nodular melanoma.

Just make sure they give you an MRI scan and a PET scan to see if you have it anywhere else in your body.  Don't just let them assume you only have the melanoma on your ear.  If I would have had scans I wouldn't have been a Stage IV two years later.

They have a lot of treatments that are successful.  Yervoy is one that has been approved.  There are a lot of clinical trials and treatments if you have the BRAF mutation.  I am not BRAF positive so I am limited on treatments.  I took Yervoy and could only take three of the four treatments before developing colitis which is one of the bad side effects and they will not give me anymore Yervoy treatments.  I still feel even though I had a bad reaction I think the Yervoy helped me a great deal as some of my tumors have resolved. It has been two years since I found out I was Stage IV and I am still living and feeling pretty good.  It is easy to be paranoid though and wonder how long I can remain feeling good.

I know it is devestating at first to hear the words melanoma but it doesn't have to be a death sentence.  There are a lot of people on this site that are years of NED (no evidence of disease) after treatment.  You are young and strong so you should be able to take the treatments with no problem.  They have come along way with treatments for melanoma. 

I don't want to give you too much to think about but want to reiterate the importance of them giving you scans periodically.  I  wish you the best and try not to panic too much there is help out there for you.  Make sure you are seeing a doctor that is well knowledged in melanoma.  Take care.

Karen in FL

Hi Swanee,

Thanks for your response.  I am not sure I know about the TIL treatment.  I looked it up on the internet and saw a couple of videos.  One video the person had melanoma back in 2009 and was totally cured.  Why don't they use TIL for all Stage IV melanoma patients?  It seemed that the tumor they removed from the patient had to have a certain criteria before it would work effectively with TIL.  But my doctor has not mentioned TIL at all.  Do you know if there are any other criteria you have to have to be considered for TIL?

It seems like you should have had more scans than since May 2011.  I would be afraid to go that long without a scan.  My last scan was in December 2012 and I had not had one since June 2012.  I was kind of a wreck waiting six months in between because as you know every trwinge you have you think it is melanoma growing somewhere else in your body.

Also are you BRAF positive?  That seems to be the big drawback for me as all of the new treatments have to have the patient be BRAF positive and I am BRAF negative. Also when were you first diagnosed and was IPI the only treatment you have had for the melanoma?

I'm glad you responded because everyone else talks about the treatments they are on and I have been on the wait and see list so I am sorry you share the same story as me but it is somewhat comforting to know there are others that are on the wait and see list as well.

Hopefully, we will have some breakthrough on this disease soon.  Also, I do not feel that bad yet are you also feeling somewhat healthy for now?

Sorry for the many questions but it is nice to have someone in the same situation.

Thanks,

Karen in FL

Hi Swanee,

Thanks for your response.  I am not sure I know about the TIL treatment.  I looked it up on the internet and saw a couple of videos.  One video the person had melanoma back in 2009 and was totally cured.  Why don't they use TIL for all Stage IV melanoma patients?  It seemed that the tumor they removed from the patient had to have a certain criteria before it would work effectively with TIL.  But my doctor has not mentioned TIL at all.  Do you know if there are any other criteria you have to have to be considered for TIL?

It seems like you should have had more scans than since May 2011.  I would be afraid to go that long without a scan.  My last scan was in December 2012 and I had not had one since June 2012.  I was kind of a wreck waiting six months in between because as you know every trwinge you have you think it is melanoma growing somewhere else in your body.

Also are you BRAF positive?  That seems to be the big drawback for me as all of the new treatments have to have the patient be BRAF positive and I am BRAF negative. Also when were you first diagnosed and was IPI the only treatment you have had for the melanoma?

I'm glad you responded because everyone else talks about the treatments they are on and I have been on the wait and see list so I am sorry you share the same story as me but it is somewhat comforting to know there are others that are on the wait and see list as well.

Hopefully, we will have some breakthrough on this disease soon.  Also, I do not feel that bad yet are you also feeling somewhat healthy for now?

Sorry for the many questions but it is nice to have someone in the same situation.

Thanks,

Karen in FL

Hi Swanee,

Thanks for your response.  I am not sure I know about the TIL treatment.  I looked it up on the internet and saw a couple of videos.  One video the person had melanoma back in 2009 and was totally cured.  Why don't they use TIL for all Stage IV melanoma patients?  It seemed that the tumor they removed from the patient had to have a certain criteria before it would work effectively with TIL.  But my doctor has not mentioned TIL at all.  Do you know if there are any other criteria you have to have to be considered for TIL?

It seems like you should have had more scans than since May 2011.  I would be afraid to go that long without a scan.  My last scan was in December 2012 and I had not had one since June 2012.  I was kind of a wreck waiting six months in between because as you know every trwinge you have you think it is melanoma growing somewhere else in your body.

Also are you BRAF positive?  That seems to be the big drawback for me as all of the new treatments have to have the patient be BRAF positive and I am BRAF negative. Also when were you first diagnosed and was IPI the only treatment you have had for the melanoma?

I'm glad you responded because everyone else talks about the treatments they are on and I have been on the wait and see list so I am sorry you share the same story as me but it is somewhat comforting to know there are others that are on the wait and see list as well.

Hopefully, we will have some breakthrough on this disease soon.  Also, I do not feel that bad yet are you also feeling somewhat healthy for now?

Sorry for the many questions but it is nice to have someone in the same situation.

Thanks,

Karen in FL

I too have no treatment plan at this time.  I was diagnosed in December 2010 of the Stage IV melanoma.  Since then I've have had cyber knife radiation to the head in March 2011; then IPI Yervoy in May to July 2011 of which I only could take three of the four treatments before I developed the bad side effect of colitis; then August 2012 I had radiation to the head. 

I do not feel bad and the IPI did work for me but now there are threesubcutaneous nodules that have more than doubled in size since my previous scan back in June 2012 and I also the melanoma in my lower back L4, L2 that have increased.

My doctor tells me the only treatment I am eligible for is conventional treatment of Paclitaxel/Carboplatin (chemotherapy) which I am of the understanding you get really sick from, lose your hair, etc. and it doesn't have a favorable percentage of success.  He tells me he wouldn't mind if I waited longer to treat since I do not feel that bad yet.

I too am like you I don't know if my doctor is being aggressive enough either.  He is very nice but I feel he could look into more options for me.

He tells me I am not eligible for the new PD1 because of the bad side effect I had with Yervoy.  I also am not BRAF positive so that limits me to my options as well.

I keep researching but do not come up with other options either.  It seems all of the progress they have made with melanoma is for those that have the BRAF mutation.

Just wondering if anyone else is not treating and just kind of waiting and seeing.  It drives you crazy to think this disease is in your body spreading at its leisure without doing some kind of treatment to prevent it from spreading.

By the way I am treating at Moffitt Cancer Center here in FL.

Karen in FL

I too have no treatment plan at this time.  I was diagnosed in December 2010 of the Stage IV melanoma.  Since then I've have had cyber knife radiation to the head in March 2011; then IPI Yervoy in May to July 2011 of which I only could take three of the four treatments before I developed the bad side effect of colitis; then August 2012 I had radiation to the head. 

I do not feel bad and the IPI did work for me but now there are threesubcutaneous nodules that have more than doubled in size since my previous scan back in June 2012 and I also the melanoma in my lower back L4, L2 that have increased.

My doctor tells me the only treatment I am eligible for is conventional treatment of Paclitaxel/Carboplatin (chemotherapy) which I am of the understanding you get really sick from, lose your hair, etc. and it doesn't have a favorable percentage of success.  He tells me he wouldn't mind if I waited longer to treat since I do not feel that bad yet.

I too am like you I don't know if my doctor is being aggressive enough either.  He is very nice but I feel he could look into more options for me.

He tells me I am not eligible for the new PD1 because of the bad side effect I had with Yervoy.  I also am not BRAF positive so that limits me to my options as well.

I keep researching but do not come up with other options either.  It seems all of the progress they have made with melanoma is for those that have the BRAF mutation.

Just wondering if anyone else is not treating and just kind of waiting and seeing.  It drives you crazy to think this disease is in your body spreading at its leisure without doing some kind of treatment to prevent it from spreading.

By the way I am treating at Moffitt Cancer Center here in FL.

Karen in FL

I too have no treatment plan at this time.  I was diagnosed in December 2010 of the Stage IV melanoma.  Since then I've have had cyber knife radiation to the head in March 2011; then IPI Yervoy in May to July 2011 of which I only could take three of the four treatments before I developed the bad side effect of colitis; then August 2012 I had radiation to the head. 

I do not feel bad and the IPI did work for me but now there are threesubcutaneous nodules that have more than doubled in size since my previous scan back in June 2012 and I also the melanoma in my lower back L4, L2 that have increased.

My doctor tells me the only treatment I am eligible for is conventional treatment of Paclitaxel/Carboplatin (chemotherapy) which I am of the understanding you get really sick from, lose your hair, etc. and it doesn't have a favorable percentage of success.  He tells me he wouldn't mind if I waited longer to treat since I do not feel that bad yet.

I too am like you I don't know if my doctor is being aggressive enough either.  He is very nice but I feel he could look into more options for me.

He tells me I am not eligible for the new PD1 because of the bad side effect I had with Yervoy.  I also am not BRAF positive so that limits me to my options as well.

I keep researching but do not come up with other options either.  It seems all of the progress they have made with melanoma is for those that have the BRAF mutation.

Just wondering if anyone else is not treating and just kind of waiting and seeing.  It drives you crazy to think this disease is in your body spreading at its leisure without doing some kind of treatment to prevent it from spreading.

By the way I am treating at Moffitt Cancer Center here in FL.

Karen in FL

Thanks for the info.  I read on the internet that was dated December 2012 about how Moffitt was doing the ACT TIL research.  I will check it out further.  Probably not going to get too many answers this time of year.

As I told you I was only able to take three treatments of IPI before I had the bad side effect of colitis but I do feel like it has kept me living a year and a half longer.  Some of the subcutaneous nodules disappeared and some of the bone mets have been resolved.  I wasn't that sick on the IPI but they say the side effect would be worse if I took it again.  I was told that "they can't kill me to cure me" when I asked if I could take the fourth treatment of the IPI.

I will look into NIH or MD Anderson to see if they have an opinion of me that is different from my doctor.

Karen in FL

Thanks for the info.  I read on the internet that was dated December 2012 about how Moffitt was doing the ACT TIL research.  I will check it out further.  Probably not going to get too many answers this time of year.

As I told you I was only able to take three treatments of IPI before I had the bad side effect of colitis but I do feel like it has kept me living a year and a half longer.  Some of the subcutaneous nodules disappeared and some of the bone mets have been resolved.  I wasn't that sick on the IPI but they say the side effect would be worse if I took it again.  I was told that "they can't kill me to cure me" when I asked if I could take the fourth treatment of the IPI.

I will look into NIH or MD Anderson to see if they have an opinion of me that is different from my doctor.

Karen in FL

Thanks for the info.  I read on the internet that was dated December 2012 about how Moffitt was doing the ACT TIL research.  I will check it out further.  Probably not going to get too many answers this time of year.

As I told you I was only able to take three treatments of IPI before I had the bad side effect of colitis but I do feel like it has kept me living a year and a half longer.  Some of the subcutaneous nodules disappeared and some of the bone mets have been resolved.  I wasn't that sick on the IPI but they say the side effect would be worse if I took it again.  I was told that "they can't kill me to cure me" when I asked if I could take the fourth treatment of the IPI.

I will look into NIH or MD Anderson to see if they have an opinion of me that is different from my doctor.

Karen in FL