What is NED? Unclear on meaning
Is NED a certain level of SUV in PET scan? No sign of tumor? Husband has had PET scans showing basically "normal" SUV numbers, tumor is still there, has shrunk a little.
His lung cancer is HER 2 +, has had one year of chemo every 3 weeks , after 6 months Alimta and Pemetrex only. Has one more year of continued tx. Thanks.
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hi @mil63 - definitely ask hubby's oncologist for clarification. NED usually means No Evidence of Disease, but without more context, I can't say.
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2 Reactions@mil63, It is sounding like his results are at least stable, that's good news.
Your question is a good one for the oncologist. I agree that usually NED means 'no evidence of disease'. Being that the tumor is still there, possibly the radiologist is using that acronym for some other meaning. My oncologist likes to interpret the radiologist's interpretation for me. My oncologist has my whole history in perspective when he's reviewing the scans and reports. Which can be helpful too.
When is your husband's next oncology appointment?
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2 ReactionsActually no doctor has ever used that term. The cancer is considered "quiescent" and SUVs stable and within "normal" numbers. Basically sclerotic and inactive. I just want to know when that would be considered .
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1 ReactionAlso, a blood test has not been done yet to check the cancer level as it seems is happening more often in my reading.
In my experience with CRC, NED means clear scans and Signatera (ctDNA) of zero…the tumor must be dead, usually determined by path tests after surgery, at least in my own case. Onc should clear up that important info for you.
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2 ReactionsI hope if he stays stable a lobectomy is considered in future. He is stage 4 but a good responder to tx from the beginning. The next scan in September will give us much information.
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1 ReactionThank you everyone.
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2 Reactions@mil63, I'm sorry your husband's oncologist has introduced some confusion.
NED is not a medical term. Instead, it's been adopted by patient communities and, as others have said, stands for No Evidence of Disease. It's an odd term to use since you say the tumor is still there. On the other hand you say his SUV levels are "normal." Does that mean there is no significant uptake of sugar which would mean that the tumor is now benign? I would definitely seek clarification from his oncologist.
Also, Alimta is the brand name for the chemo drug, Pemetrexed, so they are the same thing. The world of lung cancer and its treatments is very confusing at first. But after several years, you'll be surprised at how much you've learned! I wish you and your husband all the best. Please provide updates as you receive them. We're all in this together.
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1 ReactionThank you . The MD hasn’t said that, I just read and needed clarification on term . Appreciate it!
Yes I mistakenly wrote names- it’s
Immunotherapy therapy with Keytruda and the Pemetrexed chemo every 3 weeks.
The SUV levels are all between 1-3, which I understand are within normal range , but they all it minimal activity or largely quiescent. Recently he had one rogue small lesion at SUV level 3 which was oligoprogression and radiated. We hope next scan things continue under control. The lung tumor is malignant but has shrunk in all scans, the biopsy stated it is a HER 2 mutation, but it is not actively growing or lighting up in scans.
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