Metastatic Melanoma Treatment

Where are you being treated?  Are you going to a melanoma specialist?  What area of the country do you live (I can recommend specialist in some area's of the USA)?

Melanoma doesn't just have "activity"…it invades. You need to be on something more effective than interferon.  Interferon only has a 5% efficacy rate.

It was 11 years after my 1st excision and cancer free until this year. Showed up in my lymph nodes under my right arm.  All excised, 5 of 17 were tumors. Brain MRI every 3 months since April 2012.  Two lesions showed up on 11/5 Brain MRI and two nodules showed up in left side.  This is after 3 treatments of Yervoy. Now on Zelboraf with options to get into MEK trial if nothing shows up on 1/17 Brain MRI.

 

ChrisAnn (54 years old) Stage IIIc in April 2012. Now Stage IV.

Huntington Beach, CA  92648

Where are you being treated?  Are you going to a melanoma specialist?  What area of the country do you live (I can recommend specialist in some area's of the USA)?

Melanoma doesn't just have "activity"…it invades. You need to be on something more effective than interferon.  Interferon only has a 5% efficacy rate.

It was 11 years after my 1st excision and cancer free until this year. Showed up in my lymph nodes under my right arm.  All excised, 5 of 17 were tumors. Brain MRI every 3 months since April 2012.  Two lesions showed up on 11/5 Brain MRI and two nodules showed up in left side.  This is after 3 treatments of Yervoy. Now on Zelboraf with options to get into MEK trial if nothing shows up on 1/17 Brain MRI.

 

ChrisAnn (54 years old) Stage IIIc in April 2012. Now Stage IV.

Huntington Beach, CA  92648

Where are you being treated?  Are you going to a melanoma specialist?  What area of the country do you live (I can recommend specialist in some area's of the USA)?

Melanoma doesn't just have "activity"…it invades. You need to be on something more effective than interferon.  Interferon only has a 5% efficacy rate.

It was 11 years after my 1st excision and cancer free until this year. Showed up in my lymph nodes under my right arm.  All excised, 5 of 17 were tumors. Brain MRI every 3 months since April 2012.  Two lesions showed up on 11/5 Brain MRI and two nodules showed up in left side.  This is after 3 treatments of Yervoy. Now on Zelboraf with options to get into MEK trial if nothing shows up on 1/17 Brain MRI.

 

ChrisAnn (54 years old) Stage IIIc in April 2012. Now Stage IV.

Huntington Beach, CA  92648

I'm sorry you're dealing with this.  This seems like yet another, one after another, story of "had it removed and was told that everything was good", only to have this 6 years later or 10 years later or X years later……  I just don't get it, why are people being told "everything is good."  That's misleading and gives a false sense, in my humble opinion.

I'm sorry you're dealing with this.  This seems like yet another, one after another, story of "had it removed and was told that everything was good", only to have this 6 years later or 10 years later or X years later……  I just don't get it, why are people being told "everything is good."  That's misleading and gives a false sense, in my humble opinion.

I'm sorry you're dealing with this.  This seems like yet another, one after another, story of "had it removed and was told that everything was good", only to have this 6 years later or 10 years later or X years later……  I just don't get it, why are people being told "everything is good."  That's misleading and gives a false sense, in my humble opinion.

Hi,

Welcome, even though we don't really want any new members!  : ))   and that's an oxymoron statement!   Wow, you've been through a lot already and I really can't comment on what you have experienced or tried but I would like to say that I would definitely find yourself a melanoma specialist, if you are not currently working with one  as it can make all the difference.  If you don't mind please fill out as much on your profile as possible….there is such a wealth of information and knowledge  here on this MPIP board  and you will be served best  by sharing your location and medical treatment center.  A lot of the board here can give you good directions to the best care if they know where you are at, many here share the same dr.'s or treatment facilities.

Just to let you know, I did lose a lot of  my hair during a treatment of ipi, or yervoy.    I asked my dermatologist and she called the situation telogen effluviums a temporary hair loss but can be very significant and it takes about a year for your hair to return to normal.  I had to cut my hair very short and wait for it to grow back.  It wouldn't of been a big deal if I had been warned, but I wasn't,  so it felt very stressful!  Also, at the thinnest point of hair loss was my daughter's wedding and I must say it looked awful!  Wish I would have worn a wig!

I'm sure someone else on the board will respond who has experienced interferon and it's side effects.  Good luck to you and I hope this is the end of your melanoma battle.  I've read of many who are NED after being treated with interferon so hopefully it is your last treatment and you have won the battle against melanoma.

Best wishes,

Swanee

 

 

Hi,

Welcome, even though we don't really want any new members!  : ))   and that's an oxymoron statement!   Wow, you've been through a lot already and I really can't comment on what you have experienced or tried but I would like to say that I would definitely find yourself a melanoma specialist, if you are not currently working with one  as it can make all the difference.  If you don't mind please fill out as much on your profile as possible….there is such a wealth of information and knowledge  here on this MPIP board  and you will be served best  by sharing your location and medical treatment center.  A lot of the board here can give you good directions to the best care if they know where you are at, many here share the same dr.'s or treatment facilities.

Just to let you know, I did lose a lot of  my hair during a treatment of ipi, or yervoy.    I asked my dermatologist and she called the situation telogen effluviums a temporary hair loss but can be very significant and it takes about a year for your hair to return to normal.  I had to cut my hair very short and wait for it to grow back.  It wouldn't of been a big deal if I had been warned, but I wasn't,  so it felt very stressful!  Also, at the thinnest point of hair loss was my daughter's wedding and I must say it looked awful!  Wish I would have worn a wig!

I'm sure someone else on the board will respond who has experienced interferon and it's side effects.  Good luck to you and I hope this is the end of your melanoma battle.  I've read of many who are NED after being treated with interferon so hopefully it is your last treatment and you have won the battle against melanoma.

Best wishes,

Swanee

 

 

Hi,

Welcome, even though we don't really want any new members!  : ))   and that's an oxymoron statement!   Wow, you've been through a lot already and I really can't comment on what you have experienced or tried but I would like to say that I would definitely find yourself a melanoma specialist, if you are not currently working with one  as it can make all the difference.  If you don't mind please fill out as much on your profile as possible….there is such a wealth of information and knowledge  here on this MPIP board  and you will be served best  by sharing your location and medical treatment center.  A lot of the board here can give you good directions to the best care if they know where you are at, many here share the same dr.'s or treatment facilities.

Just to let you know, I did lose a lot of  my hair during a treatment of ipi, or yervoy.    I asked my dermatologist and she called the situation telogen effluviums a temporary hair loss but can be very significant and it takes about a year for your hair to return to normal.  I had to cut my hair very short and wait for it to grow back.  It wouldn't of been a big deal if I had been warned, but I wasn't,  so it felt very stressful!  Also, at the thinnest point of hair loss was my daughter's wedding and I must say it looked awful!  Wish I would have worn a wig!

I'm sure someone else on the board will respond who has experienced interferon and it's side effects.  Good luck to you and I hope this is the end of your melanoma battle.  I've read of many who are NED after being treated with interferon so hopefully it is your last treatment and you have won the battle against melanoma.

Best wishes,

Swanee

 

 

I completed interferon a little over a year ago. I did loose hair, more in the beginning . Most of that was due to the radiation I received on the back of my head where the melanoma was removed. My hair has filled in now that I have been off ineterferon, except for we’re the WLE was performed. Even where the radiation was directed there some hair growing back , but you would not see it unless you got real close.. Fatigue was really bad, several times i got some sort of stomach/flu virus that kept me from eating and getting out off bed for several days. I also had a seizure, it was my second in about 20 years. I believe this one was due to the treatment, stress and fatigue. the issues i had eventually went away after i completed the treatment. You can read my profile for details on my year taking interferon. I would be happy to answer any questions you might have. From what I have read everyone reacts differently to this treatment. Take care and I hope everything goes well.

Scot

I completed interferon a little over a year ago. I did loose hair, more in the beginning . Most of that was due to the radiation I received on the back of my head where the melanoma was removed. My hair has filled in now that I have been off ineterferon, except for we’re the WLE was performed. Even where the radiation was directed there some hair growing back , but you would not see it unless you got real close.. Fatigue was really bad, several times i got some sort of stomach/flu virus that kept me from eating and getting out off bed for several days. I also had a seizure, it was my second in about 20 years. I believe this one was due to the treatment, stress and fatigue. the issues i had eventually went away after i completed the treatment. You can read my profile for details on my year taking interferon. I would be happy to answer any questions you might have. From what I have read everyone reacts differently to this treatment. Take care and I hope everything goes well.

Scot

I completed interferon a little over a year ago. I did loose hair, more in the beginning . Most of that was due to the radiation I received on the back of my head where the melanoma was removed. My hair has filled in now that I have been off ineterferon, except for we’re the WLE was performed. Even where the radiation was directed there some hair growing back , but you would not see it unless you got real close.. Fatigue was really bad, several times i got some sort of stomach/flu virus that kept me from eating and getting out off bed for several days. I also had a seizure, it was my second in about 20 years. I believe this one was due to the treatment, stress and fatigue. the issues i had eventually went away after i completed the treatment. You can read my profile for details on my year taking interferon. I would be happy to answer any questions you might have. From what I have read everyone reacts differently to this treatment. Take care and I hope everything goes well.

Scot

Your situation sounds similar to mine. In July of 2008 I had a "suspicious" mole removed from my left thigh near my knee. It was determined that it wasn't melanoma and the margins were clear. A year and a month later I found the enlarged lymph gland in my left groin, it was removed and found to be melanoma. More lymph nodes were removed from that area and then from deeper in my pelvis. I also asked to have some of the tissue removed from the site where the mole was and have it tested. The margins were still clear. I had the high dose interferon for just 4 weeks. Soon after a PET scan reveled 4 mets in my liver which were removed by radio frequency ablation. I have been NED since then, 2 1/2 years.

The cancer center where I was treated now has a melanoma clinic and I asked them about the mole. I was told that sometimes the cancer can start in one place and them move on without a trace. Sounds possible. This may be what happened to you.

I wish you luck in finding a good melanoma specialist and a better treatment plan. Come back to this site often. The wonderful people here are full of useful information, encouragement and comfort.

My hope for a beast free 2013.

Your situation sounds similar to mine. In July of 2008 I had a "suspicious" mole removed from my left thigh near my knee. It was determined that it wasn't melanoma and the margins were clear. A year and a month later I found the enlarged lymph gland in my left groin, it was removed and found to be melanoma. More lymph nodes were removed from that area and then from deeper in my pelvis. I also asked to have some of the tissue removed from the site where the mole was and have it tested. The margins were still clear. I had the high dose interferon for just 4 weeks. Soon after a PET scan reveled 4 mets in my liver which were removed by radio frequency ablation. I have been NED since then, 2 1/2 years.

The cancer center where I was treated now has a melanoma clinic and I asked them about the mole. I was told that sometimes the cancer can start in one place and them move on without a trace. Sounds possible. This may be what happened to you.

I wish you luck in finding a good melanoma specialist and a better treatment plan. Come back to this site often. The wonderful people here are full of useful information, encouragement and comfort.

My hope for a beast free 2013.

Your situation sounds similar to mine. In July of 2008 I had a "suspicious" mole removed from my left thigh near my knee. It was determined that it wasn't melanoma and the margins were clear. A year and a month later I found the enlarged lymph gland in my left groin, it was removed and found to be melanoma. More lymph nodes were removed from that area and then from deeper in my pelvis. I also asked to have some of the tissue removed from the site where the mole was and have it tested. The margins were still clear. I had the high dose interferon for just 4 weeks. Soon after a PET scan reveled 4 mets in my liver which were removed by radio frequency ablation. I have been NED since then, 2 1/2 years.

The cancer center where I was treated now has a melanoma clinic and I asked them about the mole. I was told that sometimes the cancer can start in one place and them move on without a trace. Sounds possible. This may be what happened to you.

I wish you luck in finding a good melanoma specialist and a better treatment plan. Come back to this site often. The wonderful people here are full of useful information, encouragement and comfort.

My hope for a beast free 2013.