NED

[caw517]

I have Mac and have been in ibrance and aromasin since June 2016 I keep seeing people writing that their scans are good and that they are NED. My onc has never used that term on me . I know it means no evidence of disease but what drives the onc to use that term. Do any of your “spots” still light up on the scan? I am confused.

[nstonerocks]

Hello

Once in a while someone with metastatic cancer has no sign of cancer. That’s NED. No Evidence Of Disease. Most of us hope to stay the same or improve somewhat. I pray for stable. This year a few of my spots grew so I’m on faslodex instead of letrozole. Hopefully will knock those bad boys down to where they were. Hope this helps. it’s overwhelming especially in the beginning.

[caw517 in reply to nstonerocks]

Thx. I know I am happy with stable PET results. I was just wondering do some people actually have all spots on their PET not show up at all?!

[nstonerocks in reply to caw517]

Yes. Some show no cancer. PET scans don’t light up.

[nstonerocks in reply to nstonerocks]

Meaning their pet scans don’t light up.

[SeattleMom]

I think that NED (no evidence of disease) is the more recent terminology used for "remission." They are one and the same.

[PJBinMI]

One thing to keep in mind about scans is that a cancerous lesion needs to be big enough to be seen to show up on them, so NED means that there are not lesions large enough to be seen on currently available tests and it does not mean that there is no cancer whatsoever. And not all oncs use that term. Mine didn't. Stable is really good news! I was diagnosed with MBC 14 and a half years ago and have been stable for probably about 10 of those years. When I've had progression, it has been very slow and we have watched it before changing meds. That approach has worked well for me. But each of us is dealing with our own individual set of cancer cells and what works for one of us may not be the best approach for another. But it is great news that you are doing so well and many of us who respond well to hormonal treatment do so for long periods of time.

[Crazydentist in reply to PJBinMI]

Hi

You’ve done remarkably well with mbc..I suspect you are the exception to the rule though

I don’t know any other mbc patient living this long..wish we all could

Sorry having a tearful day

Barb xx

[PJBinMI in reply to Crazydentist]

Those tears serve a great purpose--they carry enzymes out of our brains, enzymes that create sad feelings, so crying and feeling better afterwards has a basis in brain chemistry! Reading that in a scientific journal a long time ago changed how I feel about crying myself, lol! I suspect most of us have tearful days, I know I do! And ticked off "life isn't fair" day, too. I know that I am fortunate to have such lazy easily controlled cancer cellls, and take no credit for that! But I have known a number of women who have lived for 8 years or longer with mbc, and met a 30 year survivor at a MBCN conference a few years after being diagnosed. We just don't know how long we will have.......not that we have ever known........ I am grateful to have made it to 72, but in my family, on my dad's side, nobody has died this young in generations.

[nstonerocks in reply to PJBinMI]

Great post. Thanks

[nstonerocks in reply to Crazydentist]

Hi Barb

PJ’s response says it better than I could. Know you are getting a long distance hug. Have you ever called SHARE to talk to a buddy? I thought I was dying from day 1 and I was a mess. I got to speak with a woman in my clinical situation who was 12 years in and still very active. She was diagnosed pre Ibrance. As PJ says, who knows when our time is up. But I couldn’t bear to live even 1 year drowning in sorrow. I’m over 4 years. I’m working and seeing the world. It isn’t easy and I cry sometimes and I often feel I have the Scarlet letter stamped on me except it’s a big pink “C.” I do what I have to to keep myself going and constantly remind myself not to sweat the crap and to really embrace and even create my own joy and peace. This from a somewhat neurotic and cynical gal. I was reading in my Buddhist magazine about whether the glass was half full or half empty. It’s both! It made me look at things differently. now will never see it as just half empty. I’m not sure what this has to do with mbc or what you’re going through but hope it helps in some small way.

[MMMP in reply to PJBinMI]

Very well stated!!

[Praising in reply to PJBinMI]

How long have you been on hormone treatment. I’m almost 3 years into bone Mets. Your encouraging to hear.

[PJBinMI in reply to Praising]

18 1/2 years on hormone treatment. I got almost 5 years on Letrozole, over 9 years on Felvestrant. and about 5 years on Exemestane. Earlier this year, tests showed the lousy cancer had changed to triple negative, so I'm on Xeloda now and it seems to be working. Meeting other women who were over 5, even over 10 years into MBC was the most hopeful thing I experienced early on! Bone mets are not generally fatal and those of us with bone mets only have alot to be thankful for! I hope that ten years from now, you'll be posting here to give hope and encouragement to newbies!

[Praising in reply to PJBinMI]

Wow. I can’t believe you made it 5 yrs on Letzrole. I didn’t take after my 1st stage 3. Bad se. Cancer came back 3 yrs ago bone Mets. Stable. Exemestane. I haven’t been real consistent. You are encouraging me. My ca2729 have gone up 2 the last 6 mo. 100. How often du get scanned ? Or bloodwork. I’m 70. They took me off Ibrance after 1 yr. Been stable but seeing # up from 30. Did yours go up? You are the 1 st person I ve met. Thank you and God bless you. Where do you live? I’m in Va. do you still take xgevia shot for bones? So glad to connect with you.

[PJBinMI in reply to Praising]

Tumor Markers like the Ca27-29 aren't precise enough for a change of 2 doesn't mean much. From what I've learned about them is that alot of oncs don't even use them because things besides cancer can impact them and they can make us worry when there isn't really a significant change. I had to stop the Xgeva because I developed osteonecrosis of the jaw, a known side effect that is not very common. ONJ tends to be in the lower jaw, where mine was. I get dental check-ups every 6 months and my local dentist saw it and referred me to a dental surgeon. I could feel it with my tongue, rough surface behind my last molar, bits of bone. He couldn't remove it all, prescribed a mouth wash for me to use twice a day and by the time I saw him again, it was all healed up and he said caught it early and that it likely won't be a problem for me. My short term memory isn't reliable any more and I really don't remember how often Im get scanned, maybe only when there is a reason to, but I do get blood work the most often since I've had cancer as the chemo I'm on now can cause changes. I see either my onc or a NP every month now that I'm on chemo rather than hormonal treatment. It's very hopeful that you have only bone mets, and that you have been stable on hormonal treatment. You age is a benefit....our metabolism slow down as we age and that means any cancer progression is most likely to be slower than if we were younger. I was diagnosed the month I turned 58 and now I'm 77. I live in the Midwest in a very rural area. I have to travel about 50 miles each way to see most of my drs, my primary care dr. is local but no specialists here.

[Crazydentist]

Hi

Thank you so much for your kindness

I don’t know what’s the matter with me..just gone to pieces today.. being in pain drags me down and I’ve been dwelling on stuff like my funeral and who’ll be there etc which is morbid and not like me at all..I’m a fun girl normally.. it’s 5 months since my diagnosis and I think it’s hit me recently as before, I was dealing with biopsies scans bloods etc..now I’m not getting all this attention and feel alone..I’m meeting my daughter tomorrow and hopefully ride the horses though forecast horrid..I always feel better around nature and animals

Barb xx

[MMMP in reply to Crazydentist]

It gets easier as time flys by very fast - I find nature somewhere every day!!!