› Forums › General Melanoma Community › NED – Results of Rudy’s recent scan
- This topic has 24 replies, 7 voices, and was last updated 10 years, 4 months ago by Tina D.
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- December 2, 2013 at 7:23 am
We had so much to be thankful for this Thanksgiving having just learned the great news days before the holiday that the results of Rudy's most recent scans revealed no evidence of disease! For those that do not know his story, he was diagnosed in late February 2013 with Nodular Malignant Melanoma – Stage IV with 15+ mets in his liver and his left groin lymph node. After testing positive for BRAF he was started on Zel in late March of 2013 and had a great result as far as tumor shrinkage, however, he suffered many grade 4 side effects. In July 2013, he started on the Dabrafenib/MEK combo, which he has tolerated much better and he has now reached NED! We are so thankful for this blessing! I am always mindful of the fact that for most patients this treatment will not provide a durable response and the beast will eventually find a way around it, however, we are so grateful and celebrating God's blessings and focusing on the positive and not what may happen.
PDL is coming to UCI where Rudy's oncologist will be heading the trials next month; however, his NED status will not permit him to be a participant. Therefore, I am hopeful that if his status does change that he will then be able to participate but we will cross that bridge when and if we get to it!
For all of you still battling the beast and for your loved ones fighting along with you, you have been in my thoughts and prayers every day. May the Lord be your strength and comfort along this very hard road and may you know that you are not alone and you are loved! God bless you all!
Yours truly,
Gina
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- December 2, 2013 at 6:31 pm
That is fantastic Gina. So happy for you and your family. I hope you don't need any more treatments in the future but sounds like you have a good plan in place if you do.
Brian
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- December 3, 2013 at 8:12 am
Gina, I am so thrilled for you, Rudy & children. I know what a relief it is to get the NED result after undergoing months of treatment & associated side-effects. I too am on the GSK combo & have recently had the same NED result. I am ,however, still adjusting to side- effects with the help of prednisone -when off it I seem prone to temps & really sore feet/ aching legs & calf muscles. Does Rudy have any side- effects ? Again , so pleased your prayers have been answered. Best wishes,
Lyn
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- December 3, 2013 at 9:24 am
Hello Lyn,
I'm happy to hear that you are also NED! Unfortunately, yes, Rudy does suffer from the same side effects, mainly the really sore feet and aching legs, which strangely comes and goes. He hasn't been treated for the side effects with prednisone or anything else. One thing of interest that I forgot to mention in my post is that Rudy's oncologist took him off MEK, he said because of the side effects. He said that Rudy can always go back to it if he needs it. I wish I would have questioned him more about this as the more I pondered it when we left his office it seemed odd to me because his side effects have been very manageable and only occasionally. I'm a bit concerned that dabrafenib alone may not be enough to keep him NED, but I do trust his oncologist so I'm trying not to worry too much!
I will pray that you are able to manage your side effects and continue to remain NED! Wishing you all the best as well! Take care!
God Bless you and yours,
Gina
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- December 3, 2013 at 9:24 am
Hello Lyn,
I'm happy to hear that you are also NED! Unfortunately, yes, Rudy does suffer from the same side effects, mainly the really sore feet and aching legs, which strangely comes and goes. He hasn't been treated for the side effects with prednisone or anything else. One thing of interest that I forgot to mention in my post is that Rudy's oncologist took him off MEK, he said because of the side effects. He said that Rudy can always go back to it if he needs it. I wish I would have questioned him more about this as the more I pondered it when we left his office it seemed odd to me because his side effects have been very manageable and only occasionally. I'm a bit concerned that dabrafenib alone may not be enough to keep him NED, but I do trust his oncologist so I'm trying not to worry too much!
I will pray that you are able to manage your side effects and continue to remain NED! Wishing you all the best as well! Take care!
God Bless you and yours,
Gina
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- December 3, 2013 at 9:24 am
Hello Lyn,
I'm happy to hear that you are also NED! Unfortunately, yes, Rudy does suffer from the same side effects, mainly the really sore feet and aching legs, which strangely comes and goes. He hasn't been treated for the side effects with prednisone or anything else. One thing of interest that I forgot to mention in my post is that Rudy's oncologist took him off MEK, he said because of the side effects. He said that Rudy can always go back to it if he needs it. I wish I would have questioned him more about this as the more I pondered it when we left his office it seemed odd to me because his side effects have been very manageable and only occasionally. I'm a bit concerned that dabrafenib alone may not be enough to keep him NED, but I do trust his oncologist so I'm trying not to worry too much!
I will pray that you are able to manage your side effects and continue to remain NED! Wishing you all the best as well! Take care!
God Bless you and yours,
Gina
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- December 3, 2013 at 8:12 am
Gina, I am so thrilled for you, Rudy & children. I know what a relief it is to get the NED result after undergoing months of treatment & associated side-effects. I too am on the GSK combo & have recently had the same NED result. I am ,however, still adjusting to side- effects with the help of prednisone -when off it I seem prone to temps & really sore feet/ aching legs & calf muscles. Does Rudy have any side- effects ? Again , so pleased your prayers have been answered. Best wishes,
Lyn
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- December 3, 2013 at 8:12 am
Gina, I am so thrilled for you, Rudy & children. I know what a relief it is to get the NED result after undergoing months of treatment & associated side-effects. I too am on the GSK combo & have recently had the same NED result. I am ,however, still adjusting to side- effects with the help of prednisone -when off it I seem prone to temps & really sore feet/ aching legs & calf muscles. Does Rudy have any side- effects ? Again , so pleased your prayers have been answered. Best wishes,
Lyn
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- December 3, 2013 at 1:41 pm
All I can say is wow – congratulations on the fantastic news.
Kevin
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- December 3, 2013 at 1:41 pm
All I can say is wow – congratulations on the fantastic news.
Kevin
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- December 3, 2013 at 1:41 pm
All I can say is wow – congratulations on the fantastic news.
Kevin
Tagged: cutaneous melanoma
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