› Forums › General Melanoma Community › Newly diagnosed Stage IV – lots of anxiety…
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NYKaren.
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- July 23, 2011 at 7:27 pm
Hi folks, I am a 57-year-old "youngster" who was diagnosed a few weeks ago with Stage IV melanoma. I had a lesion removed from my back a few years ago along with the sentinel glands from both armpits, which came back negative. I was so happy that I had dodged the proverbial bullet. A year later I was diagnosed with a meningioma which was removed successfully. On my yearly CT scan (June 8th of this year), my primary doc said that I had another brain tumor that was in a totally different location from the first.
Hi folks, I am a 57-year-old "youngster" who was diagnosed a few weeks ago with Stage IV melanoma. I had a lesion removed from my back a few years ago along with the sentinel glands from both armpits, which came back negative. I was so happy that I had dodged the proverbial bullet. A year later I was diagnosed with a meningioma which was removed successfully. On my yearly CT scan (June 8th of this year), my primary doc said that I had another brain tumor that was in a totally different location from the first. Since I had previously had a melanoma, she was very concerned. She ordered a full body CT and sent me to the neurosurgeon to set up a surgery. (This is all slightly complicated by the fact that my treatment is through the Sacramento VA. My surgery had to be done at the David Grant Hospital at Travis AFB). Just as I was about to go under, the surgeon received the results from the full body scan which showed several tumors in my lungs. They were thinking about stopping the surgery and doing gamma knife on my brain and doing biopsy on my lungs, but they decided to go ahead and remove the brain tumor anyway. It was definitely melanoma. The oncologist has said that the lung tumors are not resectable because of the number and locations.
Basically, the oncologist did not give me a lot of hope due to the brain tumor prognosis. I came in to meet with her for the first time with lots of questions but got very few answers. I guess the most discouraging part of the research is not knowing why some people respond and others don't. Nonetheless, I am ready to fight the good fight as I am a single mom to a wonderful 17-year-old daughter, and I have lots of things to do!!
The first thing that is going to happen in a couple of weeks is whole brain radiation at Daivd Grant Hospital. Then I need to let my oncologist know a couple of weeks after that what treatment option I have decided on. IL-2 seems to have better odds than some of the others. Unfortunately, I would have to go to the Palo Alto VA Hospital where there is a staff dedicated to dealing with the side effects. I would have no family there and my understanding is that the side effects are treacherous (any personal experiences would be GREATLY appreciated).
Yervoy (ipi) also seems like a viable option, and I can be treated in Sacramento. Does anyone have any personal experiences, good or bad, with this drug?
I feel like everything is closing in on me, even though I am pretty sure in reality if one treatment does not work, another can be tried.
Any input would be so greatly appreciated!!
Sincerely
Cristy
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- July 23, 2011 at 8:32 pm
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.
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- July 23, 2011 at 8:32 pm
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.
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- July 23, 2011 at 8:38 pm
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
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- July 23, 2011 at 9:29 pm
You might want to ask about gamma knife instead of whole brain radiation. There's a discussion on it over at: http://www.melanomaforum.org
Hope it goes well for you.
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- July 23, 2011 at 9:29 pm
You might want to ask about gamma knife instead of whole brain radiation. There's a discussion on it over at: http://www.melanomaforum.org
Hope it goes well for you.
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- July 23, 2011 at 9:29 pm
You might want to ask about gamma knife instead of whole brain radiation. There's a discussion on it over at: http://www.melanomaforum.org
Hope it goes well for you.
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- July 23, 2011 at 9:29 pm
You might want to ask about gamma knife instead of whole brain radiation. There's a discussion on it over at: http://www.melanomaforum.org
Hope it goes well for you.
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- July 23, 2011 at 10:10 pm
Thank you for all of your responses. I already had the brain tumor removed. The whole brain radiation is to proactively protect against the formation of new tumors. I thought that gamma knife was for the treatment of tumors, but I am definitely going to the link in the forum that discusses it – thanks again and have a great weekend!
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- July 23, 2011 at 10:10 pm
Thank you for all of your responses. I already had the brain tumor removed. The whole brain radiation is to proactively protect against the formation of new tumors. I thought that gamma knife was for the treatment of tumors, but I am definitely going to the link in the forum that discusses it – thanks again and have a great weekend!
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- July 23, 2011 at 8:38 pm
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
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- July 23, 2011 at 10:11 pm
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
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- July 24, 2011 at 1:00 am
Thanks for the re-posting suggestion …a newby error!! 🙂 I am close to the Bay area, however I do not have insurance. My treatment will be only through the VA system, however that's not too bad since my oncologist is from UC Davis. If I get the IL-2 from Palo Alto VA, I'm not sure where the physicians are from, but very possibly from UCSF.
The pathology lab is currently testing for BRAF mutation and will check out clinical trials for me. I will, too.
Yervoy sounds like a great option as well, despite te side effects. I'm not sure if I would try it first, or second, after IL-2.
I am so glad I found you as well!
Cristy
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- July 24, 2011 at 1:00 am
Thanks for the re-posting suggestion …a newby error!! 🙂 I am close to the Bay area, however I do not have insurance. My treatment will be only through the VA system, however that's not too bad since my oncologist is from UC Davis. If I get the IL-2 from Palo Alto VA, I'm not sure where the physicians are from, but very possibly from UCSF.
The pathology lab is currently testing for BRAF mutation and will check out clinical trials for me. I will, too.
Yervoy sounds like a great option as well, despite te side effects. I'm not sure if I would try it first, or second, after IL-2.
I am so glad I found you as well!
Cristy
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- July 23, 2011 at 10:11 pm
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
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- July 23, 2011 at 11:53 pm
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
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- July 24, 2011 at 1:22 am
Hi Linda,
Temadar is definitely an option that is on the table – I especially like it because of the oral administration.
The onc explained to me why WBR is preferred in my case because of the probability of widespread melanoma cells hanging around there. I just found a great website, http://www.livingwithbrainmets.org, that states this:
For patients who have a single brain metastasis that is removed surgically, whole brain radiation therapy was found in a randomized study to give great improvements in preventing cancer from regrowing in the brain and in prolonging survival.
I am really concerned about the lung mets and can't wait to start treatment for them. RIght now I am feeling like the more information I get, the harder the decision is and the more overwhelmed I feel.
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- July 24, 2011 at 1:22 am
Hi Linda,
Temadar is definitely an option that is on the table – I especially like it because of the oral administration.
The onc explained to me why WBR is preferred in my case because of the probability of widespread melanoma cells hanging around there. I just found a great website, http://www.livingwithbrainmets.org, that states this:
For patients who have a single brain metastasis that is removed surgically, whole brain radiation therapy was found in a randomized study to give great improvements in preventing cancer from regrowing in the brain and in prolonging survival.
I am really concerned about the lung mets and can't wait to start treatment for them. RIght now I am feeling like the more information I get, the harder the decision is and the more overwhelmed I feel.
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- July 23, 2011 at 11:53 pm
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
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- July 24, 2011 at 12:20 am
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
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- July 24, 2011 at 12:20 am
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
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- July 24, 2011 at 5:30 pm
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
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- July 25, 2011 at 1:50 am
Thanks for the information, Karen! Are you using Ipi alone, or did you use any other drug prior? I am just so stresses out trying to decide if I should go for the IL-2 first or just go for the Ili. I feel like there is only one shot to get it right, although I think that is probably irrational. Since I am in the VA system, the docs will send me to any VA hospital that specializes in administering whatever drug I choose. First, I have to get through the WBR sequences which my doc says is a must to keep any more brain tumors from forming. Both my lung tumors and the brain tumor (which was surgically removed) formed so quickly that it is really scary!
Thank you for your support, Karen, and I hope that your next dose goes really smoothly!
Sincerely,
Cristy
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- July 25, 2011 at 1:50 am
Thanks for the information, Karen! Are you using Ipi alone, or did you use any other drug prior? I am just so stresses out trying to decide if I should go for the IL-2 first or just go for the Ili. I feel like there is only one shot to get it right, although I think that is probably irrational. Since I am in the VA system, the docs will send me to any VA hospital that specializes in administering whatever drug I choose. First, I have to get through the WBR sequences which my doc says is a must to keep any more brain tumors from forming. Both my lung tumors and the brain tumor (which was surgically removed) formed so quickly that it is really scary!
Thank you for your support, Karen, and I hope that your next dose goes really smoothly!
Sincerely,
Cristy
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- July 24, 2011 at 5:30 pm
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
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