› Forums › General Melanoma Community › So this is where I’m at..
- This topic has 39 replies, 10 voices, and was last updated 11 years, 8 months ago by
Laurie from maine.
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- August 4, 2012 at 6:31 pm
Hi all,
Sorry for the delay, and the length, but here's the latest..
I had an MRI on the 23rd that showed new/growing tumors in the head, none over a 1 cm. A day or two later I noticed a lymph node in the groin was swelling, this same one appeared around the same time of brain tumors in Jan/Feb. It completely went away after starting Zelboraf, not even showing on a PET scan. It's weird to me that the same one, same spot, came back now, same time as my brain is under assault again… maybe there's a correlation?
Hi all,
Sorry for the delay, and the length, but here's the latest..
I had an MRI on the 23rd that showed new/growing tumors in the head, none over a 1 cm. A day or two later I noticed a lymph node in the groin was swelling, this same one appeared around the same time of brain tumors in Jan/Feb. It completely went away after starting Zelboraf, not even showing on a PET scan. It's weird to me that the same one, same spot, came back now, same time as my brain is under assault again… maybe there's a correlation?
I had a "detailed MRI" yesterday, for a clearer picture, and preparation for more SRS or WBR. But no call from the doc. She and I have always had an agreement that'd she calls me the day of the scan to update, whether good news or bad, she always has. But not this time, I'm really hoping it's just because theres not really any change from this scan and the last.
I finally, got my PET scan scheduled for Monday morning, it's a little upsetting it was ordered over a month ago and should've been done weeks ago. But people make mistakes, and the milks been spilt I guess.. moving on.
As I have progressed I have been on and off of Zelboraf since the 23rd. Due do different Dr's opinions. But as of the 2nd, I'm off completely, for now. For two reasons, "Zelboraf and radiation do not mix well together. There has been some bad interactions seen at sites irradiated in patients taking the medication. Ideally a patient should stop at least 5 days prior to radiation. And… patients who take a break from the drug sometimes regain response to the medication. This has been seen and is now published."
So here's the plan.
It's unlikely, but should all the stars align in my favor, my PET would show complete clarity of the body, except for the node, indicating there's some connection between the two, maybe the node is "seeding" my brain. They surgically remove or SRS the node, and tell me my head is SRSable again, and they do that, rather than WBR. They're all taken care of, never to return and I live a long life, learning so much from this experience, and helping others along the way until this beast is tamed. Which seems is just around the corner, if we could just hold on a little longer…
The more "realistic" plan and near to last option that's been discussed and I'm hoping for: 1. Keep off zelboraf. 2. If scans aren't too bad, get SRS, as WBR might change things. 3. After radiation, wait a week, then start zelboraf for a week. 4. Begin IL2 the next day. I would like this option, IL2 was the first thing I did and although it didn't cure me, I tolerated it well (14 bags and 9 bags) and although the dozens in my lungs and nodule on my chest progressed.. the good sized tumor in my liver just vanished without a trace the cluster of mass on my back softened for awhile. I guess I'm just excited about this, because it's another option.
If scans look bad. Or I make it through the IL2 with no benefit. Traditional Chemo is an option and something I have never tried. Most likely Temodar. Maybe Temodar and Zelboraf together..
And maybe, if I could buy a little time, maybe I could get on one of those "Compassionate Use Trials". If one shows up. One of those MEK inhibitors or AntiPD1 things I keep hearing about. I'm hoping something's gotta eventually work right?
Thanks for hearing me out. Any insight or opinions? Encouraging relatable stories?
Sorry If I've missed out on keeping up with some of you, there's so many people on here, and if you miss a day or two, the board just flies by.
-Kevin
I've been watching the Olympics lately, jealous and envying the health, energy, and strength of all these athletes. But got to thinking, in a way, we're just as strong and talented as any of these athletes, if not more.. And were a team too. Helping each other fight, not for a gold, but for life. A relentless mental, physical and emotional struggle on a whole nother level. We're basically Olympians.
I hope to post decent scan results this week and have a "set plan". Talk to you soon.
- Replies
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- August 4, 2012 at 8:10 pm
Kevin,
So glad to see your post.
If it was me, I would be on the phone with my doc on Monday, asking for results of MRI. There is no excuse good enough for not calling you. She should understand the anxiety she is putting you through because she did not call.
I pray that your Pet coms back clean ^ no new Brain mets.
MaryBeth
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- August 4, 2012 at 8:10 pm
Kevin,
So glad to see your post.
If it was me, I would be on the phone with my doc on Monday, asking for results of MRI. There is no excuse good enough for not calling you. She should understand the anxiety she is putting you through because she did not call.
I pray that your Pet coms back clean ^ no new Brain mets.
MaryBeth
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- August 4, 2012 at 8:10 pm
Kevin,
So glad to see your post.
If it was me, I would be on the phone with my doc on Monday, asking for results of MRI. There is no excuse good enough for not calling you. She should understand the anxiety she is putting you through because she did not call.
I pray that your Pet coms back clean ^ no new Brain mets.
MaryBeth
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- August 5, 2012 at 1:31 am
I love your posts and the reference to being an Olympian. I think all who post on this forum (and deal with this disease) are definitely amazing and heroic – the epitome of an Olympian.
Praying for good news and sending you good vibes!!!!!
God Bless and keep fighting.
Jeff's Mom (Bridgette)
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- August 5, 2012 at 1:31 am
I love your posts and the reference to being an Olympian. I think all who post on this forum (and deal with this disease) are definitely amazing and heroic – the epitome of an Olympian.
Praying for good news and sending you good vibes!!!!!
God Bless and keep fighting.
Jeff's Mom (Bridgette)
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- August 5, 2012 at 1:45 am
Kevin, Good luck next week, hope you get some good news, we are always impressed and inspired by the young fighters on this Board. Phil feels like an old man at 49, when he reads your story! You are wise beyond your years, maybe that’s one positive from this whole cancer experience! Anyway, Phil has had WBR, and his last MRI this past Wednesday was fine, some nine months later! If you have to go that route, please don’t hesitate to contact us, keep your chin up, there are so many here that wish you well! Valerie -
- August 5, 2012 at 1:45 am
Kevin, Good luck next week, hope you get some good news, we are always impressed and inspired by the young fighters on this Board. Phil feels like an old man at 49, when he reads your story! You are wise beyond your years, maybe that’s one positive from this whole cancer experience! Anyway, Phil has had WBR, and his last MRI this past Wednesday was fine, some nine months later! If you have to go that route, please don’t hesitate to contact us, keep your chin up, there are so many here that wish you well! Valerie -
- August 6, 2012 at 3:41 am
Hi Valerie/Phil, congrats on MRI and for sharing the news. I'm pretty sure WBR is the route I'll have to take, I'd rather SRS but I've had two serious episodes of dizzyness today and yesterday that I'm going to have to mention to a doctor. Noot sure what caused them, I'm just not feeling too well and am getting a little nervous. I really wanted to do IL2 again but based on how I feel, I dunno, i don't know what to expect… We'll see what the scans say…
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- August 6, 2012 at 3:41 am
Hi Valerie/Phil, congrats on MRI and for sharing the news. I'm pretty sure WBR is the route I'll have to take, I'd rather SRS but I've had two serious episodes of dizzyness today and yesterday that I'm going to have to mention to a doctor. Noot sure what caused them, I'm just not feeling too well and am getting a little nervous. I really wanted to do IL2 again but based on how I feel, I dunno, i don't know what to expect… We'll see what the scans say…
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- August 6, 2012 at 3:41 am
Hi Valerie/Phil, congrats on MRI and for sharing the news. I'm pretty sure WBR is the route I'll have to take, I'd rather SRS but I've had two serious episodes of dizzyness today and yesterday that I'm going to have to mention to a doctor. Noot sure what caused them, I'm just not feeling too well and am getting a little nervous. I really wanted to do IL2 again but based on how I feel, I dunno, i don't know what to expect… We'll see what the scans say…
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- August 5, 2012 at 1:45 am
Kevin, Good luck next week, hope you get some good news, we are always impressed and inspired by the young fighters on this Board. Phil feels like an old man at 49, when he reads your story! You are wise beyond your years, maybe that’s one positive from this whole cancer experience! Anyway, Phil has had WBR, and his last MRI this past Wednesday was fine, some nine months later! If you have to go that route, please don’t hesitate to contact us, keep your chin up, there are so many here that wish you well! Valerie
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- August 5, 2012 at 1:31 am
I love your posts and the reference to being an Olympian. I think all who post on this forum (and deal with this disease) are definitely amazing and heroic – the epitome of an Olympian.
Praying for good news and sending you good vibes!!!!!
God Bless and keep fighting.
Jeff's Mom (Bridgette)
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- August 5, 2012 at 2:52 am
Kevin,
I was encouraged to see that GSK applied for FDA approval Friday for both their BRAF inhibitor and MEK drugs – I am praying that the FDA will fast track them like Zel last year (4 mos) and that they are opened up for compassionate use access before then, also like Zel. Stay strong and thanks for continuing to let us be a part of your story.I had not heard that some have seen response from stopping Zel, then restarting, this was a ? I had for my onc this week actually. Thanks for sharing.
Amy (stage 4, cardiac met, currently on Zel))
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- August 5, 2012 at 2:52 am
Kevin,
I was encouraged to see that GSK applied for FDA approval Friday for both their BRAF inhibitor and MEK drugs – I am praying that the FDA will fast track them like Zel last year (4 mos) and that they are opened up for compassionate use access before then, also like Zel. Stay strong and thanks for continuing to let us be a part of your story.I had not heard that some have seen response from stopping Zel, then restarting, this was a ? I had for my onc this week actually. Thanks for sharing.
Amy (stage 4, cardiac met, currently on Zel))
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- August 5, 2012 at 3:12 am
Dear Kevin,
Bit of setback, but sounds like SRS and WBR is a good option to knock out those small mets in the brain.
I haven't either heard of stopping and re-starting Zel but perhaps it can continue working on some tumors on not others, definately an option down the track (can you remember where you read about that?).
Once you get that brain stable, then trials open up for you…so focus on that.
We are all fighting side by side here (I don't have melanoma but my father is gravely ill and I've been fighting with him for 18 months).
It definately requires mental endurance through this journey, there are so many obstacles that get in the way, but go forward and get through Kevin.
Nahmi from Melbourne
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- August 5, 2012 at 3:12 am
Dear Kevin,
Bit of setback, but sounds like SRS and WBR is a good option to knock out those small mets in the brain.
I haven't either heard of stopping and re-starting Zel but perhaps it can continue working on some tumors on not others, definately an option down the track (can you remember where you read about that?).
Once you get that brain stable, then trials open up for you…so focus on that.
We are all fighting side by side here (I don't have melanoma but my father is gravely ill and I've been fighting with him for 18 months).
It definately requires mental endurance through this journey, there are so many obstacles that get in the way, but go forward and get through Kevin.
Nahmi from Melbourne
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- August 6, 2012 at 3:59 am
Hi Nahmi, I was actually told that by a melanoma specialist/oncologist. He said he has seen this and that it has been published as well. Guess everyone's still kinda figuring this stuff out. I'm glad you're active on here and sticking by your dads side, I imagine it can be pretty exhausting taking care of someone and easier to look the other way. It's good to know people care and show compassion for one another.
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- August 6, 2012 at 3:59 am
Hi Nahmi, I was actually told that by a melanoma specialist/oncologist. He said he has seen this and that it has been published as well. Guess everyone's still kinda figuring this stuff out. I'm glad you're active on here and sticking by your dads side, I imagine it can be pretty exhausting taking care of someone and easier to look the other way. It's good to know people care and show compassion for one another.
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- August 6, 2012 at 3:59 am
Hi Nahmi, I was actually told that by a melanoma specialist/oncologist. He said he has seen this and that it has been published as well. Guess everyone's still kinda figuring this stuff out. I'm glad you're active on here and sticking by your dads side, I imagine it can be pretty exhausting taking care of someone and easier to look the other way. It's good to know people care and show compassion for one another.
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- August 5, 2012 at 3:12 am
Dear Kevin,
Bit of setback, but sounds like SRS and WBR is a good option to knock out those small mets in the brain.
I haven't either heard of stopping and re-starting Zel but perhaps it can continue working on some tumors on not others, definately an option down the track (can you remember where you read about that?).
Once you get that brain stable, then trials open up for you…so focus on that.
We are all fighting side by side here (I don't have melanoma but my father is gravely ill and I've been fighting with him for 18 months).
It definately requires mental endurance through this journey, there are so many obstacles that get in the way, but go forward and get through Kevin.
Nahmi from Melbourne
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- August 6, 2012 at 3:48 am
I pray it goes through soon as possible, we need this. When I did IL-2 there were no other options but trials. After the Adoptive Cell Therapy stopped working I was so happy to see Yervoy and Zelboraf were both FDA approved and optional therapies for me at home. Sad they didn't work for me, but since they didn't work for me, statistically, it should give others a better chance…
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- August 6, 2012 at 3:48 am
I pray it goes through soon as possible, we need this. When I did IL-2 there were no other options but trials. After the Adoptive Cell Therapy stopped working I was so happy to see Yervoy and Zelboraf were both FDA approved and optional therapies for me at home. Sad they didn't work for me, but since they didn't work for me, statistically, it should give others a better chance…
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- August 6, 2012 at 3:48 am
I pray it goes through soon as possible, we need this. When I did IL-2 there were no other options but trials. After the Adoptive Cell Therapy stopped working I was so happy to see Yervoy and Zelboraf were both FDA approved and optional therapies for me at home. Sad they didn't work for me, but since they didn't work for me, statistically, it should give others a better chance…
-
- August 5, 2012 at 2:52 am
Kevin,
I was encouraged to see that GSK applied for FDA approval Friday for both their BRAF inhibitor and MEK drugs – I am praying that the FDA will fast track them like Zel last year (4 mos) and that they are opened up for compassionate use access before then, also like Zel. Stay strong and thanks for continuing to let us be a part of your story.I had not heard that some have seen response from stopping Zel, then restarting, this was a ? I had for my onc this week actually. Thanks for sharing.
Amy (stage 4, cardiac met, currently on Zel))
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- August 5, 2012 at 5:41 pm
Kevin,
There is a great article for you titled "Beating Cancer With Hope" at
http://www.ncrf.org/articles/you.html
Best wishes,
Gene
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- August 5, 2012 at 5:41 pm
Kevin,
There is a great article for you titled "Beating Cancer With Hope" at
http://www.ncrf.org/articles/you.html
Best wishes,
Gene
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- August 5, 2012 at 5:41 pm
Kevin,
There is a great article for you titled "Beating Cancer With Hope" at
http://www.ncrf.org/articles/you.html
Best wishes,
Gene
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- August 6, 2012 at 4:13 am
Thanks Gene, good article. I really think our bodies are capable of doing much more than we understand. I've been practicing/hoping/visualizing all day. The hardest part is "truly believing", rather than just wanting to truly believe. If that makes sense…
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- August 6, 2012 at 4:13 am
Thanks Gene, good article. I really think our bodies are capable of doing much more than we understand. I've been practicing/hoping/visualizing all day. The hardest part is "truly believing", rather than just wanting to truly believe. If that makes sense…
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- August 6, 2012 at 4:13 am
Thanks Gene, good article. I really think our bodies are capable of doing much more than we understand. I've been practicing/hoping/visualizing all day. The hardest part is "truly believing", rather than just wanting to truly believe. If that makes sense…
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- August 6, 2012 at 11:56 pm
Hi Kevin,
I am hoping the best for you. you are young and strong! Please let us know your scans results and what the plan is for you. Strong prayers coming your way!
I am in a similar situation in that my options are now a "short list" as my docor says. I had SRS on my brain a month ago and my doctor is waiting for that part of my brain to calm down and then if scans in a month show no new brain involvement he is suggesting IL-2. I did BRAF and ippi with mixed response, gave me more time but not the NED we all hope for.
take care, please know we are all pulling and praying for you
laurie from maine
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- August 6, 2012 at 11:56 pm
Hi Kevin,
I am hoping the best for you. you are young and strong! Please let us know your scans results and what the plan is for you. Strong prayers coming your way!
I am in a similar situation in that my options are now a "short list" as my docor says. I had SRS on my brain a month ago and my doctor is waiting for that part of my brain to calm down and then if scans in a month show no new brain involvement he is suggesting IL-2. I did BRAF and ippi with mixed response, gave me more time but not the NED we all hope for.
take care, please know we are all pulling and praying for you
laurie from maine
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- August 6, 2012 at 11:56 pm
Hi Kevin,
I am hoping the best for you. you are young and strong! Please let us know your scans results and what the plan is for you. Strong prayers coming your way!
I am in a similar situation in that my options are now a "short list" as my docor says. I had SRS on my brain a month ago and my doctor is waiting for that part of my brain to calm down and then if scans in a month show no new brain involvement he is suggesting IL-2. I did BRAF and ippi with mixed response, gave me more time but not the NED we all hope for.
take care, please know we are all pulling and praying for you
laurie from maine
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