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merilee
@merilee

Posts: 32
Joined: May 06, 2016

Mutations

Posted by @merilee, Mar 31, 2017

I requested that my Oncologist check for mutations as I hear so much about that..I remember her telling me not really necessary as I am stage 2A and had surgery. and chemo..I had a local recurrence in chest nodes..Which was very scary..radiation and some chemo..So I got results which showed negative to all . So not sure exactly what that means for me?? Wouldn’t they have done this long ago before they did my surgery?? Dont understand. Anyone that can explain please do. Thank you

REPLY

Hi @merilee, Thank you for posting your question here.

I would like to connect you with mentor, @llwortman and members @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major @bestcare .

I hope they can share their knowledge on how testing is done before and after treatment and at what point testing for mutation is done.

Hi @merille
It is my understanding that molecular testing is only recently being used for determination of the mutations. The researchers are finding new and unusual mutations daily it seems.
My wife was stage 3a when she was diagnosed. She had a VATS bilobectomy at Mayo-Rochester in May, 2015 at which time the Mayo doctor ordered the standard mutation testing for lung cancer patients. He felt confident that he had removed all of the Cancer, and the tests came back negative.
A year later her cancer had metastasized into her left lung and they restaged her to stage 4 non-operable.
Fall of 2016, after she had not responded to nine rounds of Opdivo infusions the Mayo oncologist ordered a molecular study, from another biopsy. He explained that the biopsy taken at the time of her bilobectomy was not sufficient size to do a thorough test.
Six weeks later the study revealed two mutations, one of which is primary and treatable. The mutation was a HERR2 mutation, common in breast cancer, but not so common in lung cancer.
She is now being treated and is responding to a “cocktail” infusion of herceptin/perjetta…and the tumors are shrinking!
Thanks to the advancements in lung cancer research many more of what were formerly hopeless cases will soon be treatable. Some day I predict that there will be an annual cancer innoculation that we will be able to get-just like we do for the flu today!

@jamienolson

Hi @merilee, Thank you for posting your question here.

I would like to connect you with mentor, @llwortman and members @burrkay @alicantina1 @merilee @alvinw @shortshot80 @mryzuch @amws @pearlgee @cheris @annette1 @cheris @windwalker @lesbatts @major @bestcare .

I hope they can share their knowledge on how testing is done before and after treatment and at what point testing for mutation is done.

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Hello. I do not have lung cancer, but do have several serious lung
diseases. I joined this thread to learn more about it because I have several
friends who do have it. My heart goes out to all of you. Terri M.
 

@burrkay

Hi @merille
It is my understanding that molecular testing is only recently being used for determination of the mutations. The researchers are finding new and unusual mutations daily it seems.
My wife was stage 3a when she was diagnosed. She had a VATS bilobectomy at Mayo-Rochester in May, 2015 at which time the Mayo doctor ordered the standard mutation testing for lung cancer patients. He felt confident that he had removed all of the Cancer, and the tests came back negative.
A year later her cancer had metastasized into her left lung and they restaged her to stage 4 non-operable.
Fall of 2016, after she had not responded to nine rounds of Opdivo infusions the Mayo oncologist ordered a molecular study, from another biopsy. He explained that the biopsy taken at the time of her bilobectomy was not sufficient size to do a thorough test.
Six weeks later the study revealed two mutations, one of which is primary and treatable. The mutation was a HERR2 mutation, common in breast cancer, but not so common in lung cancer.
She is now being treated and is responding to a “cocktail” infusion of herceptin/perjetta…and the tumors are shrinking!
Thanks to the advancements in lung cancer research many more of what were formerly hopeless cases will soon be treatable. Some day I predict that there will be an annual cancer innoculation that we will be able to get-just like we do for the flu today!

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Dearest Team Burkay:

You have the greatest insights, positive attitudes and amazing information. You are both very valuable to Connect!
Thank you for all you are both doing by sharing the information about your lung cancer journey.I think you would
agree, We are so fortunate to live a great quality of life because of the amazing care of Mayo Clinic Doctors, Researchers,
and now Connect, Thank you both so much, for staying Connected!
You both deserve a Hug
Linda

Hi Marilee:
I commend you for asking your doctor to review and discuss your specific case with you. This is exactly what I would do , and have done
when I have had questions about my CT scans! I have learned that “Google” can be confusing and make my head spin. On the other hand,
aren’t we fortunate to live in an era where medical research and doctors can give us proper diagnosis and proper treatment.
Keep up the positive attitude.
You deserve a Hug
Linda

Liked by merilee

Thank you all for your input.. I will be having my three month scan tomorrow,. Yes very nervous…Wish me luck..Dr is on Thursday…. Merilee

@burrkay

Hi @merille
It is my understanding that molecular testing is only recently being used for determination of the mutations. The researchers are finding new and unusual mutations daily it seems.
My wife was stage 3a when she was diagnosed. She had a VATS bilobectomy at Mayo-Rochester in May, 2015 at which time the Mayo doctor ordered the standard mutation testing for lung cancer patients. He felt confident that he had removed all of the Cancer, and the tests came back negative.
A year later her cancer had metastasized into her left lung and they restaged her to stage 4 non-operable.
Fall of 2016, after she had not responded to nine rounds of Opdivo infusions the Mayo oncologist ordered a molecular study, from another biopsy. He explained that the biopsy taken at the time of her bilobectomy was not sufficient size to do a thorough test.
Six weeks later the study revealed two mutations, one of which is primary and treatable. The mutation was a HERR2 mutation, common in breast cancer, but not so common in lung cancer.
She is now being treated and is responding to a “cocktail” infusion of herceptin/perjetta…and the tumors are shrinking!
Thanks to the advancements in lung cancer research many more of what were formerly hopeless cases will soon be treatable. Some day I predict that there will be an annual cancer innoculation that we will be able to get-just like we do for the flu today!

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Thanks Linda! I agree we are very blessed to have the folks at May and the insights revealed via Mayo Connect to give us the required guidance and direction to keep us going!
Keep smiling!

@merilee

Thank you all for your input.. I will be having my three month scan tomorrow,. Yes very nervous…Wish me luck..Dr is on Thursday…. Merilee

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Best of luck to you Merillee! We are all
Praying for good news!

Liked by merilee

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