Newly diagnosed Stage IV – lots of anxiety…

My 38 year old husband was dx with stage 4 in January 2011.  He had 2 tumors surgically removed.  Did 7 weeks of Gleevec (he's C-kit positive).  It didn't work.  He just finished his 4 ipi/yervoy treatments.  We think it worked–2 tumors disappeared, but several lymphnodes look like new malignancies.  The ipi was fairly easy on him–4 IV treatments spaced 3 weeks apart.  It took 90 min. for each treatment.  He's had some stomach issues–a little bit of cramping, some nausea and a little diarrhea (not bad–he didn't need any medication).  The worst has been the fatigue–he's sleeping 10+ hours at night and needing 2-3 more hours many days in the middle of the day.  Overall, it hasn't been too bad at all–especially since it seems to have worked.  You're right–there's no rhyme or reason to why any of it works.  I would check to see if you are c-Kit, BRAF or MEK positive.  The ipi was easy to get–our insurance covers it, so we just pay an office visit co-pay for each dose.  If you have any of the mutatations, that opens up a window for lots of other options–unfortunately, they are all in trials, so you have to search them out.

My 38 year old husband was dx with stage 4 in January 2011.  He had 2 tumors surgically removed.  Did 7 weeks of Gleevec (he's C-kit positive).  It didn't work.  He just finished his 4 ipi/yervoy treatments.  We think it worked–2 tumors disappeared, but several lymphnodes look like new malignancies.  The ipi was fairly easy on him–4 IV treatments spaced 3 weeks apart.  It took 90 min. for each treatment.  He's had some stomach issues–a little bit of cramping, some nausea and a little diarrhea (not bad–he didn't need any medication).  The worst has been the fatigue–he's sleeping 10+ hours at night and needing 2-3 more hours many days in the middle of the day.  Overall, it hasn't been too bad at all–especially since it seems to have worked.  You're right–there's no rhyme or reason to why any of it works.  I would check to see if you are c-Kit, BRAF or MEK positive.  The ipi was easy to get–our insurance covers it, so we just pay an office visit co-pay for each dose.  If you have any of the mutatations, that opens up a window for lots of other options–unfortunately, they are all in trials, so you have to search them out.

Hi and welcome to the froum no-one wants to be a member of by choice.

It is kinda slow here on weekends, but there are many here from all walks of life with all stages that are knowledgable and will be more than happy to assist you.

IL-2 and Yervoy are both good options and you will find several recent posts concerning both.

Jane from Maine is one that is a full responder to Il-2, you may wish to check out her Il-2 tipsheet for starters.

http://community.melanoma.org/cgi-bin/mpip/dbforum.pl?db=main_bb&printContext=497680&dad=497678

Kim, who posted today as well, is also a IL-2 responder. I am sure she will see your post soon and assist as well.

Best wishes,

Michael

Hi and welcome to the froum no-one wants to be a member of by choice.

It is kinda slow here on weekends, but there are many here from all walks of life with all stages that are knowledgable and will be more than happy to assist you.

IL-2 and Yervoy are both good options and you will find several recent posts concerning both.

Jane from Maine is one that is a full responder to Il-2, you may wish to check out her Il-2 tipsheet for starters.

http://community.melanoma.org/cgi-bin/mpip/dbforum.pl?db=main_bb&printContext=497680&dad=497678

Kim, who posted today as well, is also a IL-2 responder. I am sure she will see your post soon and assist as well.

Best wishes,

Michael

Hi Cristy,

Since you are near the Bay Area (I live here), is there an option for you to get a second opinion by a melanoma specialist such as Dr. Adil Daud at UCSF for Dr. Minor at California Pacific Medical Center   – both in SF?

I would think it would be important to do some genetic testing as well for the Braf mutation to see if you may quality for vemufafenib.  

So sorry about the progression but arm yourself with as much information as possible so you can make  decision that feels right for you.

I did Yervoy in a clinical trial for resected melanoma but the dosing was different (every 2 months)  and for unrectable disease, I believe there are 4 doses adminstered 3 weeks apart.   My side effects were very mild but I'm sure there are others on this board who can share their experiences with it.   You have to be vigilent about any signs of colitis which can become serious if not treated quickly and some people''s pituitary function is affected which can be corrected with meds.

Wishing you the best of luck and glad you found us here ..

Mary

Hi Cristy,

Since you are near the Bay Area (I live here), is there an option for you to get a second opinion by a melanoma specialist such as Dr. Adil Daud at UCSF for Dr. Minor at California Pacific Medical Center   – both in SF?

I would think it would be important to do some genetic testing as well for the Braf mutation to see if you may quality for vemufafenib.  

So sorry about the progression but arm yourself with as much information as possible so you can make  decision that feels right for you.

I did Yervoy in a clinical trial for resected melanoma but the dosing was different (every 2 months)  and for unrectable disease, I believe there are 4 doses adminstered 3 weeks apart.   My side effects were very mild but I'm sure there are others on this board who can share their experiences with it.   You have to be vigilent about any signs of colitis which can become serious if not treated quickly and some people''s pituitary function is affected which can be corrected with meds.

Wishing you the best of luck and glad you found us here ..

Mary

Cristy,

I'm sorry you've had to join us.  My thoughts are that you need to repost with a topic heading of something like "decisions to be made for brain mets".  I know you said that you already had the surgery but you need something to get the attention to the many on this board that have had brain mets.  I'm thinking of Carmen specifically. I'll look for her e-mail and if I can find it I'll send her a note to post to you.

I do not have experience with brain mets but I've been on this board for a long time. I do not remember whole brain radiation being used as a preventative.  Usually people use either gamma knife or cyber knife to clean up the area after the tumor has been removed. WBR is a severe treatment, I hope they discussed with you the possible side effects.

The world of melanoma has changed considerably during the last 2 years with new options. Many oncologists are not up to date with all of the new treatment options. Have they discussed temador with you? That is a drug that passes through the brain barrier. THere are trials with the B-raf drugs for brain mets also.  It does sound like you still have lots of questions to be answered.

Like I said, please repost so those who just scan the board can see your specific needs.

Linda

Stage IV since 06 NED 6 weeks

mets to bladder, breast, lymph nodes

Cristy,

I'm sorry you've had to join us.  My thoughts are that you need to repost with a topic heading of something like "decisions to be made for brain mets".  I know you said that you already had the surgery but you need something to get the attention to the many on this board that have had brain mets.  I'm thinking of Carmen specifically. I'll look for her e-mail and if I can find it I'll send her a note to post to you.

I do not have experience with brain mets but I've been on this board for a long time. I do not remember whole brain radiation being used as a preventative.  Usually people use either gamma knife or cyber knife to clean up the area after the tumor has been removed. WBR is a severe treatment, I hope they discussed with you the possible side effects.

The world of melanoma has changed considerably during the last 2 years with new options. Many oncologists are not up to date with all of the new treatment options. Have they discussed temador with you? That is a drug that passes through the brain barrier. THere are trials with the B-raf drugs for brain mets also.  It does sound like you still have lots of questions to be answered.

Like I said, please repost so those who just scan the board can see your specific needs.

Linda

Stage IV since 06 NED 6 weeks

mets to bladder, breast, lymph nodes

I was on the same trial with Ipi/Yervoy that Mary D was on. I had resected melanoma and Ipi boosted my immune system at least 5 times over baseline (this occurs in 10-20% of patients). Ipi did go after my pituitary gland and I've been on a hormone replacement drug for over 2.5 years.

 God Bless,

 Jim M.

 stage 3C

I was on the same trial with Ipi/Yervoy that Mary D was on. I had resected melanoma and Ipi boosted my immune system at least 5 times over baseline (this occurs in 10-20% of patients). Ipi did go after my pituitary gland and I've been on a hormone replacement drug for over 2.5 years.

 God Bless,

 Jim M.

 stage 3C

Hi Cristy,

Just wanted to offer you my support, and to tell you that I'm having my 4th dose of Ipi on thursday.  My side effects have been: severe diarhhea, putting me on steriod that ONLY effects the "gut", Endocort.  It's working beautifully.  Other side effect is severe rash, and they're doing everything to avoid prednisone, as it can affect the efficacy of Ipi or delay the next (and last)  treatment.  If you are treated with Ipi, I hope your doc has experience with it (since it's so new, the experience most likely is from clinical trials) because there are so many side effects, from mild to severe, and they must be managed properly.

Good luck!

Karen

Hi Cristy,

Just wanted to offer you my support, and to tell you that I'm having my 4th dose of Ipi on thursday.  My side effects have been: severe diarhhea, putting me on steriod that ONLY effects the "gut", Endocort.  It's working beautifully.  Other side effect is severe rash, and they're doing everything to avoid prednisone, as it can affect the efficacy of Ipi or delay the next (and last)  treatment.  If you are treated with Ipi, I hope your doc has experience with it (since it's so new, the experience most likely is from clinical trials) because there are so many side effects, from mild to severe, and they must be managed properly.

Good luck!

Karen