Stage IV NED crew : lets support each other
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Hi ladies! Curious at what point you went from scans every 3 months to less frequent. I’ve been NEAD for 19 months now. Curious if that’s something I should consider discussing with my MO as the 2-year mark approaches or stick with scans every 3 months. Thanks
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Hi MommyErin - congrats on being 19 months NEAD! I currently fell off the NED wagon, but I hope to be back on it soon. I was diagnosed January 2018 with liver mets. GemCarbo got me to NED after only a few cycles. I had PET/CTs every 3 months. Was NED April, July, and October so we decided to stop chemo. My oncologist's plan was to do PET/CT at 3 months, then 4 months, and so on. Putting more and more time between scans. Also, because I only had liver mets, his plan was to start to toggle between full body PET/CT and abdominal MRI. Looks like you just had liver mets? If that's the case, perhaps start to put in abdominal MRIs instead for monitoring. Also, if you have reliable tumor markers, that might help give you some confidence as you start to decrease your scans. Hope that helps
And as an aside, in case anyone is curious, my January 2019 scan showed the cancer came back while off treatment, so I am back on GemCarbo. PET/CT next week. Hoping I can rejoin the NED club again.
B-A-P and MommyErin. I was diagnosed at 33 with a 3 year old and 6 week old (now 2 and 5). So much motivation to get back to NED and stay that way!
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Congrats to so many celebrating good news!!
And to the (aptly-named) BLISS:
Thanks for noting the recent Nature paper, its very important! shows that glucocorticoids are elevated in metastatic cancers, and as the name suggest, these are steroid receptors (hence the "oid" at the end of the name). It is a long-standing concern that we have to take steroids with chemo, because it is needed to 'strengthen' our normal cells so we survive it, but of course it also "super-strenghtens" the cancer cells so they can resist it! I hope we will see some big responses of MBC to combo immunotherapy trials this year, and lessen our need for chemo...
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MommyErin- good to know ! I’ve had one clean scan and so hoping it has stayed that way. I finished chemo in Jan but was technically ned or extremely close to it (7mm node was moderately active , was 1.6 cm to start and had two rounds after the fact), but couldn’t start hormonal therapy until after surgery. I actually only just started this week so I’m hoping the close to 10 weeks without it was fine. I’m sure it is. But always scary. Thanks for the heads up on the rads. I just kinda want to be done and back to routine. Plus I’m getting poor from not working . I’m brca2 so it seems we have things in common. Doing this while young and with small kids is hard and terrifying, but gives us such strong motivation.
THriving - you did it before and I believe you can do it again! You got this. It suxks though I know especially because you had such great scans. Having to go back on treatment is a fear of mine. I’m enjoying not having chemo and want it to stay that way
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MommyErin - I had mets to both bones (everywhere) and liver (two small ones) and I was NED after about 18 months and have stayed that way for over 6 years. I went from having PET scans to CT and Bone scans every six months, which is the schedule I am still on. I know a few women that do just yearly scans... my oncologist has suggested that since she does check my blood work and tumor markers every 2-3 mo, but I haven't yet made that leap of faith and not sure that I ever will. I have a scan coming up in April, and I get every bit as anxious as I did in the beginning. I had older kids when diagnosed - middle school and high school - and my goal at the time was to make sure I saw them all graduate. Now they are in college and I want to make sure they graduate from that, and then I will start focusing on making sure I am around for whatever comes next!
XO
Andrea
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Andi,
You make me hopeful to maintain this status too
I’m Her2 -ive and have often wondered that despite the aggressiveness of Her2 , if it’s better especially when you have mets. Seems like herceptin works fairly well and for a long period of time .
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Hi Erin
I have just been working out my timeline. It is easy to get mixed up with dates. I achieve NEAD one year after stage 4 dx in March 2018.
The scan result I have just had is my first 6 monthly one, with the previous one being in Sept 18’.
Personally, I am happy to have 6 monthly scans now. My anxiety is as bad as ever though.
Andi, your story makes me incredibly hopeful that I may manage to stay on this first line of treatment for years like yourself. Sending warmest wishes for your April scan.
Erin, you are also doing very well, but the scan decision is so hard. From what I can remember though you could even be stage 3 as wasn’t there some uncertainty at the time you were diagnosed?
Liz
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Ladies, apologies firstly to Bliss as I called you 32 instead of 58... although I'm hoping I made you younger! 🤭
Re scans, I had only two 3 monthly CT scans and then achieved NED in Dec 18. This after 6 months on Letrozole/ Ibrance. My MO then pushed me to a 6 month scan interval which will take me to end of May for next scan. I was very anxious about that timescale, but she'd said to keep a keen eye on symptoms (breathlessness for me) and they would scan me if I was symptomatic. I saw her today for check in and she said I'm clinically stable and seemed pretty relaxed. We'll properly catch up after the next scan. My BC nurse team are very supportive and do a lot of shrugging shoulders. It's catching as I find myself doing the same! Bloods still crap and I'm delayed a week yet again for next cycle. 🙄
I also have issues with fatigue, stiffness, pins and needles in my arm/ hands, bowel issues and an RSI in my wrist, but all manageable and they tell me those should not be cumulative/get worse. If anything they should improve. We'll see!
What I do do is complementary stuff, which I find REALLY helps your head...and I'm off to the island of South Uist in the outer Hebrides with a lifelong friend for a week in April. A regular haunt for us over 30 years as she owns a house there which was the family Croft. Google it Ladies ... THE most fabulous landscape (machair), wildlife and beaches with tourquoise seas. Do not care if the weather is foul, although we've always been pretty lucky. “No such thing as bad weather, only the wrong clothes" is our mantra! My ID pic was taken up there a couple of years ago
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jackaboo - so pleased for your great news!
I must be the only person who actually liked getting radiation. Lol. I had it with my original dx to breast and node area and then we blasted my single rib met when I was dx with mets. My skin was not affected either time but I think that might be rare. The bigger issue for me was sleep. I don’t fall asleep easily normally but both times I had rads, I was so sleepy by 10pm and got a solid 8-9 hours per night. Best sleep ever!
Love to all,
Lauren
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My wife had been ER/PR+ but it turned triple negative and went wild while taking Xeloda. She was then put on Halaven (eribulen) and, after only the first 3 cycles, her too numerous to count mets to spine and hips were gone; the Halaven had eradicated it all. She's been NED for her last 2 PET scans and has been off all chemo for the last 2 1/2 months.
Several times now, while off chemo, she's had relapases of her worst chemo days. Very tired, wobbly legs, just plain not feeling good, the same feeling like when she was on chemo. Is this normal, even after 2 1/2 months?
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Karen, no worries about the name; you did make me younger! Enjoy your trip; sounds wonderful!
My daughter was in H.S.when I was dx, and my goal was to see her graduate, but now she's in college, so I look forward to that graduation, and then like you Andi, whatever comes next. BTW, Andi, I am also Her2 and you give me such great hope! For those of you who are young and have small children, I so feel for you, and can only imagine how much more scary that makes all this.
MommieErin, I'll be 4 yrs. from dx in June and declared NEAD in May 2017 after 23 mos. Since then, my scans have been every 3 mos. At one point, my MO suggested going every 6 mos., but then a nodule in my lung appeared she wanted to follow. Turned out to be nothing, but she didn't mention the 6 mos. again. I think she's being super aggressive, which I like, but I suggested every four months at my last appt. and she agreed. My next bone/CT scans are in April for my first 4-month cycle and hope all continues on the same.
Mike, that's wonderful your wife had such a good response to Halaven. I've never taken it, but her symptoms after 2.5 months off don't seem normal to me. I would think she would be recovered by now. Has she spoken to her MO about it? Hopefully any others here who have taken Halaven will chime in.
Hugs to you all!
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I posted back in January and my last scan two weeks ago was also any NEAD. They scanned a couple weeks early. I had referred to some oligo studies the last time I was on here . I’ll post them below
https://ascopubs.org/doi/full/10.1200/jop.2015.008953
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4825322/
These are a few of the studies. Most on oligo are retrospective. Of course I couldn’t find the oligo study I was looking for. I want to say it was a retrospective md Anderson study. It included many lymph node stage 4 patients but also some bone only. It had like 24 percent out 20 years in that very selective group. While Longterm survival remains low in mbc, I think it’s important to also keep positive predictive factors in mind.
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yay! I found the study I was looking for jackboo09❤️. I posted three others but this is the one I was referencing back in January. It should be taken with a grain of salt as it includes locoregional recurrence mbc but also includes OMBC distant Mets as well: 26 percent NED for chemo naive patients treated with curative intent.
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Thanks, cfree!
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Hi Cfree,
Thank you! I read all 3. They do discuss local treatment and/or systemic. I couldn’t have rads second time round but I have still had a CR. Just need it to last now. 2 years out... Never really gets any easier. Glad you continue to fare well and thanks again for posting the links.
Liz
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Struck by just how old these stats are....unless I’m missing something of course
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Yes they are old studies. Doesn’t seem to be any data looking at How stage 4 have fared post dx more recently. The data from the Cleopatra trial is the most pertinent to me as I am on that trial still. Adding Perjeta was seen to increase survival significantly. I’m not aware of anything else and I think the jury is still out over the issue of oligometastatic disease.
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Yep everything you’ve said Jackboois my understanding too. Hopefully your trial will evidence some decent results - for you in particular!
I find it difficult to understand why the prognosis stats aren’t updated globally regularly. I wonder if research funding is difficult to source when there are so many swift progressions in treatments, which is good for us. However, the stats become out of date as soon as they are published?
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Hi all. Had CT scan last Thursday. Still waiting for results, but hoping to still be stable. Now the bads news, I've lost my job as of this Tuesday. Age discrimination, I'm 60, disguised as "new initiatives" and we're going in a different direction, so we need to eliminate your marketing job. Really? They don't plan to market anymore? Well, only with digital media, and (not said, but implied) I'm just too old to "get" the digital world. I've been there 12.5 yrs., but oh well, now that I know who they truly are, I'm ready to leave. I lose great benefits and travel, but now I'll have some time to myself! Look at the positives, right? Hugs and happy weekend to all.
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Bliss, I'm sorry you lost your job if you had planned to keep working for a while.
You will enjoy being retired! Hoping for good scan results for you.
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Bliss, that is a low blow after 12-plus years. I understand that you may not feel like fighting to stay, particularly if you're in a smallish organization and now that you see its true colors, but, wow, what jerks.
Retirement or starting something brand-new will open a new world, I promise. You'll jump in and never look back!
Tina
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Welcome to the Club, Bliss, even if I hate how you got here. Yes, what jerks.
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Thanks all for your kind words and support! It is a small organization, and according to the OWBPA form they finally provided, my "skills" are no longer needed" there, yet they invite me to reapply for the two new positions? That doesn't seem to square. Yes, what jerks! I did plan to work for a few more years, but early retirement will work if I don't find anything else. I imagine this is a large Club, Heidihill.
Now on a bright note,I'm happy to report my scans came back all stable, so that's the good news and much more important!
Have a nice day all. Hugs.
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bliss I’m so sorry to hear this news!
Don’t sign anything they give you!!! If you apply for a new position in the company it is a way for them to get out of your filing for unemployment. I had this happen to me, and I wish I’d known better :-/
Also - you may want to consult with an HR specialist. Perhaps you should be receiving a severance package???
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Bliss58, good to hear scans stable!
Job wise..” whit’s fir ye will not go bye ye........” I will be joining you in the land of retired very soon. I think there is a lot about control here....I will choose .... & you ( as in my employer) will keep your opinions to yourself when comes to my health - as a well.functioning person who’s not letting people down.
Pretty rubbish that they did not allow you that level of control.
Karen
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I’m so grateful that my scan reports “No evidence of metastatic disease in the chest, abdomen or pelvis.” I can relax for another 6 months! Wishing you all good news too
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Yay! Bstein - Cheers!
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Aggressive treatment of limited Mets will be discussed at the next ASCO! Link below 😊
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Hi everyone -- I am newly NED. Just got the results of my most recent PET scan this past Monday, showing "complete metabolic response to therapy." I am elated! My question for you all is... now what?
I'm continuing on Ibrance/Faslodex/Zoladex/Zometa, and I don't expect that will change any time soon. Other ladies on Ibrance -- have you continued after NED? And for how long? I tried to find information on the internet about the long-term management of MBC after NED, but I really couldn't find anything. I will see my oncologist in June (my appointment this week was with the PA), and I'll ask her then about long term management and follow up, but in the meantime, I am curious about your experiences.
Again, I am SO HAPPY to be NED... but cancer has been such a dominating presence in my life these last 10 months, I'm almost having an identity crisis! Did anyone else feel the same?
Thanks!
TwinkleCat
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Hi All, firstly Bstein... fab news for you! Brilliant 👏🏻👏🏻👏🏻
I have a scan end of May/ June and feelingpretty anxious, for no good reason really as everything seems to be stable ( apart from shockingly low counts) and my Onc says I'd likely be symptomatic if there was a change. TwinkleCat (great name by the way) welcome! I'm a year in from stage IV diagnosis and on Ibrance / Letrozole and NED since Dec 2018.... THE best feeling when you get that news. I will continue on this regime as long as I cope with SEs and it is working. So far so good. Others seem to take breaks, but that is not how we seem to operate in Scotland, at least for the moment.
NOW ...best advice is to put one foot in front of the other and LIVE as normally as possible. Accept you will have moments of terrifying reality especially when others who are not in this world make uneducated comments. Hopefully you trust your team, whoever they may be, and you have support from friends and family, even if some people walk away.... not their fault, just an inability to cope.
Trust the people in here to be as practical as possible, as there is vast experience which I find very reassuring, but note that we can be a bit freaked out too at times. We help each other.
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