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- This topic has 21 replies, 6 voices, and was last updated 10 years, 5 months ago by
Mat.
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- December 8, 2014 at 5:52 am
Hello all! I've read your inspiring stories every now and then, but have never officially introduced myself.
My name is Shannon and I was first diagnosed in April 2011 with a small primary on my right forehead while I was pregnant and in my third trimester. WLE and SNB showed one tiny met on one lymph node, putting me at Stage IIIC (due to ulceration on the primary). The primary came up fast and out of nowhere, and after some research, I'm convinced it was nodular, even though they diagnosed it as superfical spreading. After WLE/SNB, I had a radical neck dissection and a partial parotidectomy to try to get al the possible lymph nodes downstream. None of the 17 nodes biopsied were positive.
After I delivered my daughter, I had PET/CT and MRI, showing all was clear. When my daughter was about 3 weeks old, I started high-dose Interferon for a month (did not do low dose). After that, I had scans to monitor, and was fine until this July, when a 1.5 cm nodule in my right lung popped up on the PET. I had surgery to remove that, went to see a specialist at Memorial Sloan Kettering (since I have Kaiser, and I know they don't have a great reputation), and then started Yervoy in October on the advice of both my Kaiser oncologist and the MSKCC doc.
On Nov 5, I went into the ER with severe belly pain (thinking it was a side effect of Yervoy). It took a while to figure out what was going on, but it appeared there were 3 large masses on my liver and 2 on my kidney. These looked to be new mets 🙁 I had a scan on Dec 1 to follow up on those shadows, and sure enough, they were definitely cancer. Along with those ones (which had grown), I also had a bunch of other new mets in various places, including my lungs. I should be starting BRAF plus MEK inhibitors as soon as tomorrow, and I am praying that my tumors are responsive (I am positive for the BRAF mutation).
In the meantime, I'm trying to be as optomistic as possible (which can be hard when I know what my belly looks like), and trying to think about all the amazing stories on here. I'm also trying to be a bit realistic and trying to prepare things for my 3.5 year old daughter and my incredible husband, just in case.
I've been blogging about this whole journey at http://sunshine-and-shadows.com, if anyone is interested.
I'll try to be on here more often, as I know I can glean so much from all the wisdom here. Thank you and please keep up the hopeful stories! I certainly need them right now!
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- December 8, 2014 at 8:49 am
IL-2 is also an option and TIL. I just worry about the inhibitors when they stop working. The Anti-PD1 drugs seem to have some durable remissions. I hope the yervoy still had a lasting effect on your immune system that will be synergistic with your inhibitors.
Your new meds should kick in pretty quickly. If not, then the above are other options as well. You just have to do the IL-2 & TIL before your organs begin to fail and you become too weak from the disease.
If you had to progress, at least the few years inbetween have seen the floodgates of new treatments open up for mel. You have so much to live for.
I went from stage IIA to IV 8 years later. I was a single mom at the time of 2 girls who were 2 and 4 at the time. As young as they were, they remeber. They seek the shade at the beach or when playing outdoors and my littlest one cried because she though she was going to die when she did get sunburned.
I gave my cousin rash guards, sunscreen, and a UV pup tent to take to the beach when she took them one weekend when I was working. She didn't use any of it and said it wasn't needed. I was pissed and had to tell the girls, as young as they are, they are the one's that need to be responsible to protect their own skin. I had to really work hard to relive my daughter's anxiety. That was when I realized how deeply they were affected even at their young age.
Go kick some melanoma A$$.
Hugs,
Kim
NED 4.5 years after VATS & 23 bags of IL-2.
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- December 8, 2014 at 8:49 am
IL-2 is also an option and TIL. I just worry about the inhibitors when they stop working. The Anti-PD1 drugs seem to have some durable remissions. I hope the yervoy still had a lasting effect on your immune system that will be synergistic with your inhibitors.
Your new meds should kick in pretty quickly. If not, then the above are other options as well. You just have to do the IL-2 & TIL before your organs begin to fail and you become too weak from the disease.
If you had to progress, at least the few years inbetween have seen the floodgates of new treatments open up for mel. You have so much to live for.
I went from stage IIA to IV 8 years later. I was a single mom at the time of 2 girls who were 2 and 4 at the time. As young as they were, they remeber. They seek the shade at the beach or when playing outdoors and my littlest one cried because she though she was going to die when she did get sunburned.
I gave my cousin rash guards, sunscreen, and a UV pup tent to take to the beach when she took them one weekend when I was working. She didn't use any of it and said it wasn't needed. I was pissed and had to tell the girls, as young as they are, they are the one's that need to be responsible to protect their own skin. I had to really work hard to relive my daughter's anxiety. That was when I realized how deeply they were affected even at their young age.
Go kick some melanoma A$$.
Hugs,
Kim
NED 4.5 years after VATS & 23 bags of IL-2.
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- December 8, 2014 at 8:49 am
IL-2 is also an option and TIL. I just worry about the inhibitors when they stop working. The Anti-PD1 drugs seem to have some durable remissions. I hope the yervoy still had a lasting effect on your immune system that will be synergistic with your inhibitors.
Your new meds should kick in pretty quickly. If not, then the above are other options as well. You just have to do the IL-2 & TIL before your organs begin to fail and you become too weak from the disease.
If you had to progress, at least the few years inbetween have seen the floodgates of new treatments open up for mel. You have so much to live for.
I went from stage IIA to IV 8 years later. I was a single mom at the time of 2 girls who were 2 and 4 at the time. As young as they were, they remeber. They seek the shade at the beach or when playing outdoors and my littlest one cried because she though she was going to die when she did get sunburned.
I gave my cousin rash guards, sunscreen, and a UV pup tent to take to the beach when she took them one weekend when I was working. She didn't use any of it and said it wasn't needed. I was pissed and had to tell the girls, as young as they are, they are the one's that need to be responsible to protect their own skin. I had to really work hard to relive my daughter's anxiety. That was when I realized how deeply they were affected even at their young age.
Go kick some melanoma A$$.
Hugs,
Kim
NED 4.5 years after VATS & 23 bags of IL-2.
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- December 8, 2014 at 10:21 am
Hi, Shannon–
I'm so sorry that the melanoma reappeared so soon and with such a vengeance, but it sounds like you've researched, have a plan, and are doing everything right. I have Kaiser also and already plan to switch once I get a little older and can expect to face more serious health problems. (It's my father who has melanoma.)
I also absolutely admire your determination to stay positive but realistic in helping to prepare your husband and child. Hopefully, it won't come to that for a long, long time because it's indeed true that the outlook is much better now than it would have been three years ago.
I'll check out your blog (cuz I'm nosy like that!) 🙂 Actually, I came across a blog of a young mother with melanoma not too long ago. Her name was Kim, I believe — I'll see if I can find it again and post the link.
Hang in there. And many hugs!
Elaine
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- December 8, 2014 at 10:34 am
Here's the link. She's very religious and includes a lot of reflections on that in her writing, but if that's not your thing, you could skip past those bits. I'm not particularly religious but find her thoughts very interesting regardless. She's a gifted writer. Anyway, here's the link: http://morelikecantcer.wordpress.com
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- December 8, 2014 at 10:34 am
Here's the link. She's very religious and includes a lot of reflections on that in her writing, but if that's not your thing, you could skip past those bits. I'm not particularly religious but find her thoughts very interesting regardless. She's a gifted writer. Anyway, here's the link: http://morelikecantcer.wordpress.com
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- December 8, 2014 at 10:34 am
Here's the link. She's very religious and includes a lot of reflections on that in her writing, but if that's not your thing, you could skip past those bits. I'm not particularly religious but find her thoughts very interesting regardless. She's a gifted writer. Anyway, here's the link: http://morelikecantcer.wordpress.com
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- December 8, 2014 at 10:21 am
Hi, Shannon–
I'm so sorry that the melanoma reappeared so soon and with such a vengeance, but it sounds like you've researched, have a plan, and are doing everything right. I have Kaiser also and already plan to switch once I get a little older and can expect to face more serious health problems. (It's my father who has melanoma.)
I also absolutely admire your determination to stay positive but realistic in helping to prepare your husband and child. Hopefully, it won't come to that for a long, long time because it's indeed true that the outlook is much better now than it would have been three years ago.
I'll check out your blog (cuz I'm nosy like that!) 🙂 Actually, I came across a blog of a young mother with melanoma not too long ago. Her name was Kim, I believe — I'll see if I can find it again and post the link.
Hang in there. And many hugs!
Elaine
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- December 8, 2014 at 10:21 am
Hi, Shannon–
I'm so sorry that the melanoma reappeared so soon and with such a vengeance, but it sounds like you've researched, have a plan, and are doing everything right. I have Kaiser also and already plan to switch once I get a little older and can expect to face more serious health problems. (It's my father who has melanoma.)
I also absolutely admire your determination to stay positive but realistic in helping to prepare your husband and child. Hopefully, it won't come to that for a long, long time because it's indeed true that the outlook is much better now than it would have been three years ago.
I'll check out your blog (cuz I'm nosy like that!) 🙂 Actually, I came across a blog of a young mother with melanoma not too long ago. Her name was Kim, I believe — I'll see if I can find it again and post the link.
Hang in there. And many hugs!
Elaine
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- December 9, 2014 at 1:10 am
It sounds like they are doing the newer FDA approved treatments. Fortunately they can be very good. I'm on Keytruda currently which got FDA approved last September. Zelboraf, Yervoy and the taf/mek combo all failed me but Keytruda has been very good for me. You just have to stay strong and get to that one medicine that works for you.
The tafinlar/mekenist (ie: BRAF MEK) combo has been great for many people. Hopefully it will work for you really good for a long time. Along that type of medicine is a phase 1 trial for ERK. It basically is further up the genome chain they are hoping is even more affective. The FDA requires you try this combo since you are BRAF positive before the doctors are allowed to switch you to Keytruda.
If taf/mek does not work they are probably figuring on Keytruda. Also Memorial Sloan Kettering from what I've heard is one of the best places to go for melanoma. They have lots of trials so hopefully you can continue with them and beat this stupid disease for many many years.
Good luck to you.
Artie
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- December 9, 2014 at 1:10 am
It sounds like they are doing the newer FDA approved treatments. Fortunately they can be very good. I'm on Keytruda currently which got FDA approved last September. Zelboraf, Yervoy and the taf/mek combo all failed me but Keytruda has been very good for me. You just have to stay strong and get to that one medicine that works for you.
The tafinlar/mekenist (ie: BRAF MEK) combo has been great for many people. Hopefully it will work for you really good for a long time. Along that type of medicine is a phase 1 trial for ERK. It basically is further up the genome chain they are hoping is even more affective. The FDA requires you try this combo since you are BRAF positive before the doctors are allowed to switch you to Keytruda.
If taf/mek does not work they are probably figuring on Keytruda. Also Memorial Sloan Kettering from what I've heard is one of the best places to go for melanoma. They have lots of trials so hopefully you can continue with them and beat this stupid disease for many many years.
Good luck to you.
Artie
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- December 9, 2014 at 1:10 am
It sounds like they are doing the newer FDA approved treatments. Fortunately they can be very good. I'm on Keytruda currently which got FDA approved last September. Zelboraf, Yervoy and the taf/mek combo all failed me but Keytruda has been very good for me. You just have to stay strong and get to that one medicine that works for you.
The tafinlar/mekenist (ie: BRAF MEK) combo has been great for many people. Hopefully it will work for you really good for a long time. Along that type of medicine is a phase 1 trial for ERK. It basically is further up the genome chain they are hoping is even more affective. The FDA requires you try this combo since you are BRAF positive before the doctors are allowed to switch you to Keytruda.
If taf/mek does not work they are probably figuring on Keytruda. Also Memorial Sloan Kettering from what I've heard is one of the best places to go for melanoma. They have lots of trials so hopefully you can continue with them and beat this stupid disease for many many years.
Good luck to you.
Artie
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- December 9, 2014 at 2:01 am
Glad you introduced yourself Shannon. So sorry about how things are going for you now. Hope you get a good quick response from the BRAF/MEK combo. Please keep us up to date. As you know there's a wealth of knowledge on here and many will give unselfishly of their time and knowledge to help out a fellow warrior.
Brian
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- December 9, 2014 at 2:01 am
Glad you introduced yourself Shannon. So sorry about how things are going for you now. Hope you get a good quick response from the BRAF/MEK combo. Please keep us up to date. As you know there's a wealth of knowledge on here and many will give unselfishly of their time and knowledge to help out a fellow warrior.
Brian
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- December 9, 2014 at 2:01 am
Glad you introduced yourself Shannon. So sorry about how things are going for you now. Hope you get a good quick response from the BRAF/MEK combo. Please keep us up to date. As you know there's a wealth of knowledge on here and many will give unselfishly of their time and knowledge to help out a fellow warrior.
Brian
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- December 9, 2014 at 9:48 am
Hi Shannon,
My wife also got melanoma during her pregnancy (and I'm hearing it more and more, sounds like there may be a correlation that needs further investigation) in January of '14. She was also operated on and lymphs were proclaimed clean. Then she developed strong fevers 10 days or so before her due date and 2 days after our first daughter was born, she got the news: Stage IV with mets mostly in liver and spleen but some other places as well.
THE GOOD NEWS is that she reacted very well and very quickly to the BRAF/MEK combo. Her sub-skin lesions disappeared within days and after two months she had significant tumor reduction. We then had 5-6 great months without any problems or side effects, so hope you'll get the same… just longer 🙂
She then had progression and we're on Keytruda now since 6 days, so my advice is: keep checking regularly (blood at least every 2-3 weeks) and switch early if there are signs of progression.
GOOD LUCK!!!
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- December 9, 2014 at 9:48 am
Hi Shannon,
My wife also got melanoma during her pregnancy (and I'm hearing it more and more, sounds like there may be a correlation that needs further investigation) in January of '14. She was also operated on and lymphs were proclaimed clean. Then she developed strong fevers 10 days or so before her due date and 2 days after our first daughter was born, she got the news: Stage IV with mets mostly in liver and spleen but some other places as well.
THE GOOD NEWS is that she reacted very well and very quickly to the BRAF/MEK combo. Her sub-skin lesions disappeared within days and after two months she had significant tumor reduction. We then had 5-6 great months without any problems or side effects, so hope you'll get the same… just longer 🙂
She then had progression and we're on Keytruda now since 6 days, so my advice is: keep checking regularly (blood at least every 2-3 weeks) and switch early if there are signs of progression.
GOOD LUCK!!!
-
- December 9, 2014 at 9:48 am
Hi Shannon,
My wife also got melanoma during her pregnancy (and I'm hearing it more and more, sounds like there may be a correlation that needs further investigation) in January of '14. She was also operated on and lymphs were proclaimed clean. Then she developed strong fevers 10 days or so before her due date and 2 days after our first daughter was born, she got the news: Stage IV with mets mostly in liver and spleen but some other places as well.
THE GOOD NEWS is that she reacted very well and very quickly to the BRAF/MEK combo. Her sub-skin lesions disappeared within days and after two months she had significant tumor reduction. We then had 5-6 great months without any problems or side effects, so hope you'll get the same… just longer 🙂
She then had progression and we're on Keytruda now since 6 days, so my advice is: keep checking regularly (blood at least every 2-3 weeks) and switch early if there are signs of progression.
GOOD LUCK!!!
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- December 10, 2014 at 6:19 pm
Shannon, I started on Tafinlar and Mekinist 16 months ago when I had only "weeks" to live. The combination has a response rate of over 80%, a median progression free rate of 10.5 months–and it has been reported that ~20% of patients can ride the combo for 2-3+ years. Good luck!
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- December 10, 2014 at 6:19 pm
Shannon, I started on Tafinlar and Mekinist 16 months ago when I had only "weeks" to live. The combination has a response rate of over 80%, a median progression free rate of 10.5 months–and it has been reported that ~20% of patients can ride the combo for 2-3+ years. Good luck!
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- December 10, 2014 at 6:19 pm
Shannon, I started on Tafinlar and Mekinist 16 months ago when I had only "weeks" to live. The combination has a response rate of over 80%, a median progression free rate of 10.5 months–and it has been reported that ~20% of patients can ride the combo for 2-3+ years. Good luck!
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Tagged: cutaneous melanoma
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