› Forums › General Melanoma Community › Recently diagnosed.
- This topic has 24 replies, 7 voices, and was last updated 9 years, 6 months ago by
DZnDef.
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- October 5, 2014 at 3:27 am
I was diagnosed six years ago with Stage 3a while 22 weeks pregnant. I went through one year of interferon and had been cancer free. On July 28, 2014 I was diagosed with Stage 4. I have melanoma in my liver, lungs, bone, and had in my ovaries. I had a intense surgery on August 8, 2014 that removed my ovaries.
On August 20, 2014 I started my tafinlar treatment. On November 14, I go back to MD Anderson to have scans and possibly start my Yervoy treatment.
i have a great husband and sweet 6 year old daughter. I am still able to work full time and really feel pretty good. Sometimes I wonder if I am in denial or just handleing this well. To be honest I'm not sure which one it is. I do have a strong faith in God. But I'm still scared and sad.
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- October 5, 2014 at 4:03 am
First i am glad you have good faith in god. I lost my wife in July after 3 1/2 years stage 4. You are at a excellent place at M.D.Anderson, the best treatments are available there. You may also ask about TIL. I know they are working with cell implant . You may also want to check into Clinical Trials at NIH in Bethisda. I will pray for you and keep up the fight this can be beaten. Please let me know if I can be of any help.
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- October 5, 2014 at 4:03 am
First i am glad you have good faith in god. I lost my wife in July after 3 1/2 years stage 4. You are at a excellent place at M.D.Anderson, the best treatments are available there. You may also ask about TIL. I know they are working with cell implant . You may also want to check into Clinical Trials at NIH in Bethisda. I will pray for you and keep up the fight this can be beaten. Please let me know if I can be of any help.
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- October 5, 2014 at 4:03 am
First i am glad you have good faith in god. I lost my wife in July after 3 1/2 years stage 4. You are at a excellent place at M.D.Anderson, the best treatments are available there. You may also ask about TIL. I know they are working with cell implant . You may also want to check into Clinical Trials at NIH in Bethisda. I will pray for you and keep up the fight this can be beaten. Please let me know if I can be of any help.
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- October 5, 2014 at 5:27 am
Hi Katie,
You're handling this the best way you can. You've said you're scared and sad and you reached out for support when you needed it. That's great! You are not stuffing you feelings away and want to know how other's are dealing with this dreaded disease too… You needed some support and you've come to the right place!
First, I can't image what you are going through and my heart and thoughts go out to you and your family. I imagine that they and you are not only scared and sad, but wondering what's to come. It's scary not to know. So, take it one day at a time, remember how much you've overcome and how many people love and support you.
My only advice is to have your sans and talk to your doctor. With what my Mom's been through I always recommend a second and third opinion, with specialists. So, I hope you've found someone else to talk to about options and what their thoughts are… Including trials, if possible…
My Mom was diagnosed with stage IV almost a year ago . Even with a misdiagnose (they said she did not have brain mets and the 3rd specialist found 3!), colitis (one of the side effects that comes with Yervoy), and two rounds of gamma knife radiation t(o treat 25 brain mets) she's doing really well.
She was started on Yervoy and for her, it really was like winning the lotto. Every drug isn't right for everyone and its time for you to try something else. Hopefully, what ever treatment it is it will work for you and your family.
Best wishes and keep us posted.
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- October 5, 2014 at 5:27 am
Hi Katie,
You're handling this the best way you can. You've said you're scared and sad and you reached out for support when you needed it. That's great! You are not stuffing you feelings away and want to know how other's are dealing with this dreaded disease too… You needed some support and you've come to the right place!
First, I can't image what you are going through and my heart and thoughts go out to you and your family. I imagine that they and you are not only scared and sad, but wondering what's to come. It's scary not to know. So, take it one day at a time, remember how much you've overcome and how many people love and support you.
My only advice is to have your sans and talk to your doctor. With what my Mom's been through I always recommend a second and third opinion, with specialists. So, I hope you've found someone else to talk to about options and what their thoughts are… Including trials, if possible…
My Mom was diagnosed with stage IV almost a year ago . Even with a misdiagnose (they said she did not have brain mets and the 3rd specialist found 3!), colitis (one of the side effects that comes with Yervoy), and two rounds of gamma knife radiation t(o treat 25 brain mets) she's doing really well.
She was started on Yervoy and for her, it really was like winning the lotto. Every drug isn't right for everyone and its time for you to try something else. Hopefully, what ever treatment it is it will work for you and your family.
Best wishes and keep us posted.
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- October 5, 2014 at 5:27 am
Hi Katie,
You're handling this the best way you can. You've said you're scared and sad and you reached out for support when you needed it. That's great! You are not stuffing you feelings away and want to know how other's are dealing with this dreaded disease too… You needed some support and you've come to the right place!
First, I can't image what you are going through and my heart and thoughts go out to you and your family. I imagine that they and you are not only scared and sad, but wondering what's to come. It's scary not to know. So, take it one day at a time, remember how much you've overcome and how many people love and support you.
My only advice is to have your sans and talk to your doctor. With what my Mom's been through I always recommend a second and third opinion, with specialists. So, I hope you've found someone else to talk to about options and what their thoughts are… Including trials, if possible…
My Mom was diagnosed with stage IV almost a year ago . Even with a misdiagnose (they said she did not have brain mets and the 3rd specialist found 3!), colitis (one of the side effects that comes with Yervoy), and two rounds of gamma knife radiation t(o treat 25 brain mets) she's doing really well.
She was started on Yervoy and for her, it really was like winning the lotto. Every drug isn't right for everyone and its time for you to try something else. Hopefully, what ever treatment it is it will work for you and your family.
Best wishes and keep us posted.
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- October 5, 2014 at 3:25 pm
I assume by tafinlar treatment you mean tafinlar and mekenist? They got approved as a FDA combo last January. It should be 1 mekenist pill a day and 4 tafinlar pills a day is the full tafinlar strength. If your scans in November are good you could stay on those pills. My local onc still has patients on the predecesor of those (zelboraf) for 2 years and counting. If they are already talking Yervoy then that is another standard FDA option which possibly could be followed up if needed with the recently FDA approved Merck PD1 now called Keytruda.
At MD Anderson they have some very knowledgeable people and some treatments like TIL only available in a few places.
Hopefully the taf/mek combo pills will do great and that is all you need for a long time.
Artie
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- October 5, 2014 at 3:25 pm
I assume by tafinlar treatment you mean tafinlar and mekenist? They got approved as a FDA combo last January. It should be 1 mekenist pill a day and 4 tafinlar pills a day is the full tafinlar strength. If your scans in November are good you could stay on those pills. My local onc still has patients on the predecesor of those (zelboraf) for 2 years and counting. If they are already talking Yervoy then that is another standard FDA option which possibly could be followed up if needed with the recently FDA approved Merck PD1 now called Keytruda.
At MD Anderson they have some very knowledgeable people and some treatments like TIL only available in a few places.
Hopefully the taf/mek combo pills will do great and that is all you need for a long time.
Artie
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- October 5, 2014 at 3:25 pm
I assume by tafinlar treatment you mean tafinlar and mekenist? They got approved as a FDA combo last January. It should be 1 mekenist pill a day and 4 tafinlar pills a day is the full tafinlar strength. If your scans in November are good you could stay on those pills. My local onc still has patients on the predecesor of those (zelboraf) for 2 years and counting. If they are already talking Yervoy then that is another standard FDA option which possibly could be followed up if needed with the recently FDA approved Merck PD1 now called Keytruda.
At MD Anderson they have some very knowledgeable people and some treatments like TIL only available in a few places.
Hopefully the taf/mek combo pills will do great and that is all you need for a long time.
Artie
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- October 5, 2014 at 10:25 pm
As of right now, I am only taking tafinlar 2 times a day. I wlll start the combination Yervoy and Tafinalr on the 15th. I think he said Yervoy is 4 treatments every 3 weeks. Then he has two more iv lined up depending on how things go. And I know they recently approved another drug I have asked him about. He said the combination I am going to do is very agressive, which is what I want.
I am curious about the "diets" that are out there. You get diagnosed with Stage 4 and everyone (not in the same boat) gives you all sorts of advice and books to read. I have heard a few Sodium Bicarbonate, and having a more alkaline ph balance. I am meeting a dietician also on the 15th.
i want to do anything and everything possible to fight this. I will take any advice from fellow melanoma patients.
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- October 5, 2014 at 11:47 pm
Hi Katie,
I'm very interested in what the dietician (at MD Anderson also?) has to say. I hope you'll share! Getting all kinds of advice from people not in the same boat, sounds like it's getting a bit frustrating.
A podcast from MDA about exercise and cancer got my attention awhile back. where I got a different bit of information, about exercise. They suggested that taking 10,000 steps a day (walking etc) was a good amount to promote health. I think they got their data from a different type of cancer (much bigger population than melanoma). For me that comes out to about 4 miles. The suggestion stuck, and I try to get there at least a 3-4 times a week; my present condition doesn't interfere with walking.
Best wishes on your treatment plan. -Kyle
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- October 5, 2014 at 11:47 pm
Hi Katie,
I'm very interested in what the dietician (at MD Anderson also?) has to say. I hope you'll share! Getting all kinds of advice from people not in the same boat, sounds like it's getting a bit frustrating.
A podcast from MDA about exercise and cancer got my attention awhile back. where I got a different bit of information, about exercise. They suggested that taking 10,000 steps a day (walking etc) was a good amount to promote health. I think they got their data from a different type of cancer (much bigger population than melanoma). For me that comes out to about 4 miles. The suggestion stuck, and I try to get there at least a 3-4 times a week; my present condition doesn't interfere with walking.
Best wishes on your treatment plan. -Kyle
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- October 5, 2014 at 11:47 pm
Hi Katie,
I'm very interested in what the dietician (at MD Anderson also?) has to say. I hope you'll share! Getting all kinds of advice from people not in the same boat, sounds like it's getting a bit frustrating.
A podcast from MDA about exercise and cancer got my attention awhile back. where I got a different bit of information, about exercise. They suggested that taking 10,000 steps a day (walking etc) was a good amount to promote health. I think they got their data from a different type of cancer (much bigger population than melanoma). For me that comes out to about 4 miles. The suggestion stuck, and I try to get there at least a 3-4 times a week; my present condition doesn't interfere with walking.
Best wishes on your treatment plan. -Kyle
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- October 6, 2014 at 10:36 pm
Hello Katie – I agree with Kyle. I would be very interested to learn what your dietician recommends. Please do post here after you've had your meeting.
I have been cobbling my own diet together based on lots of different information (books, articles, my naturopathic medical doctor, etc.). About the only thing they all seem to agree on is "eat more vegetables". So that one seems to be a given. Beyond that I've seen a lot of conflicting advice. I am following my own version of what I think is the healthiest diet for me. I would like to see how it compares with what you learn from the dietician.
Be well,
Maggie
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- October 6, 2014 at 10:36 pm
Hello Katie – I agree with Kyle. I would be very interested to learn what your dietician recommends. Please do post here after you've had your meeting.
I have been cobbling my own diet together based on lots of different information (books, articles, my naturopathic medical doctor, etc.). About the only thing they all seem to agree on is "eat more vegetables". So that one seems to be a given. Beyond that I've seen a lot of conflicting advice. I am following my own version of what I think is the healthiest diet for me. I would like to see how it compares with what you learn from the dietician.
Be well,
Maggie
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- October 7, 2014 at 2:24 pm
I tend to agree with all the things that Maggie says. And I practice the same sort of healthy lifestyle myself. I often read her posts and find myself wishing there was a "like" button so I could show my appreciatation for her posts. 🙂 Laurie
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- October 7, 2014 at 2:24 pm
I tend to agree with all the things that Maggie says. And I practice the same sort of healthy lifestyle myself. I often read her posts and find myself wishing there was a "like" button so I could show my appreciatation for her posts. 🙂 Laurie
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- October 7, 2014 at 2:24 pm
I tend to agree with all the things that Maggie says. And I practice the same sort of healthy lifestyle myself. I often read her posts and find myself wishing there was a "like" button so I could show my appreciatation for her posts. 🙂 Laurie
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- October 6, 2014 at 10:36 pm
Hello Katie – I agree with Kyle. I would be very interested to learn what your dietician recommends. Please do post here after you've had your meeting.
I have been cobbling my own diet together based on lots of different information (books, articles, my naturopathic medical doctor, etc.). About the only thing they all seem to agree on is "eat more vegetables". So that one seems to be a given. Beyond that I've seen a lot of conflicting advice. I am following my own version of what I think is the healthiest diet for me. I would like to see how it compares with what you learn from the dietician.
Be well,
Maggie
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- October 5, 2014 at 10:25 pm
As of right now, I am only taking tafinlar 2 times a day. I wlll start the combination Yervoy and Tafinalr on the 15th. I think he said Yervoy is 4 treatments every 3 weeks. Then he has two more iv lined up depending on how things go. And I know they recently approved another drug I have asked him about. He said the combination I am going to do is very agressive, which is what I want.
I am curious about the "diets" that are out there. You get diagnosed with Stage 4 and everyone (not in the same boat) gives you all sorts of advice and books to read. I have heard a few Sodium Bicarbonate, and having a more alkaline ph balance. I am meeting a dietician also on the 15th.
i want to do anything and everything possible to fight this. I will take any advice from fellow melanoma patients.
-
- October 5, 2014 at 10:25 pm
As of right now, I am only taking tafinlar 2 times a day. I wlll start the combination Yervoy and Tafinalr on the 15th. I think he said Yervoy is 4 treatments every 3 weeks. Then he has two more iv lined up depending on how things go. And I know they recently approved another drug I have asked him about. He said the combination I am going to do is very agressive, which is what I want.
I am curious about the "diets" that are out there. You get diagnosed with Stage 4 and everyone (not in the same boat) gives you all sorts of advice and books to read. I have heard a few Sodium Bicarbonate, and having a more alkaline ph balance. I am meeting a dietician also on the 15th.
i want to do anything and everything possible to fight this. I will take any advice from fellow melanoma patients.
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