Stage IV NED crew : lets support each other
Comments
-
Thank you all. This definitely does feel like a new lease on life and I am committed to enjoying it. My doctor may not use the term NED. She tends to be cautious that way. She phrased it to say that my PET scan was "Completely negative" and my bones looked "just perfect" and followed that with "congratulations." So I am taking all of that as good news. I saved the voicemail and play it just to remind myself. LOL. I anticipate I will stay on the Verzenio and Exemestane. That has been the magic combo for me so far as a first line treatment and I am 16 months in on it so far. I will probably get clarification on scan follow up timing when I see her June 1st. It's very encouraging to me to see so many of you here and doing well. Thank you again for the responses.
0 -
I have been struggling with the timing of my scans. I currently get a pet scan every 4 months, but thought about extending that to every six months. I worry though we won't catch progression fast enough. My TMs have always been in the normal range so those blood tests are useless.
Shetland, did you catch your prior progressions early? How often do you get your scans?
What do others do for timing of scans?
0 -
I was NED for 2 years. The way my oncologist works is Hit it hard and fast and then see what happens. I'm extremely estrogen positive, so I did FEC for 6 cycles which got me to NED, was on tamoxifen and then letrozole once my ovaries were removed. The first time around I had a 5mm met and was considered oligometastatic and she was unsure of how to treat and monitor as she doesn't see people like me often. But I did get longevity being on only hormone therapy. She also was uncomfy giving me maintenance treatment when I was all clear because she felt like my counts would remain low, and that if i experienced bad SE's eventually, then I would eliminate a whole treatment line when treating "nothing".
I was being scanned every 4 months and there were talks of extending to 6 months as i was doing so well. Then between August and December, I felt fine, but my liver sprouted many, many many tumours all of a sudden. It was quite scary to see how fast it could happen. I never thought it could happen that fast given my situation. Like Shetland, it seems like I respond well to chemo. My half way scan showed almost a full resolution of the tumours and significant improvement. She would like to stop chemo and take a break so I can recover my counts and stay away from toxic therapy . I will be going back on tamoxifen and I would imagine be scanned every three months.
I maybe starting ibrance/Flaslodex if the window of compassionate care opens ( Getting the expensive drug on a compassionate basis) sooner rather than later but my oncologist would like to wait until it's needed. I know it's a different way to do things. I know that many stay on treatment regardless, until it stops working, so I don't know what is the right thing to do. I had to do iv chemo as first line because of the many tumours , and i fear that if that happens again that way, it'll be the same. I'm over IV chemo.
0 -
BAP, that's scary how fast your liver tumors grew. Good that chemo is working so well for you. Your MO does take a different approach but as long as it is easier on you. Can you go back to that same chemo at a later date?
I think I'll stick with the 4 month scans. I'm not comfortable going longer.
0 -
emac, My MO didn't use the term NED. He showed me the part of the PET-CT report that said "current absence of defined viable neopslatic disease" and said if someone looked at that scan, and didn't already know I have breast cancer, they would be able to tell I have breast cancer from the scan. I'll take that as NED.
My tumor markers have been sensitive, so we're changing to bi-monthly visits and blood work and four months between scans, barring any symptoms, tumor market increases, etc. Still cautious, but it gives me a little respite "this early in the disease." I'm staying on Verzenio and anastrozole; I did request a dose reduction of the Verzenio for QOL improvement.
0 -
Simone ,
It was terrifying and I was very blindsided. We know that progression or new Mets can happen anytime , but I felt like surely 4 months was a good window to catch new Mets early. Sometimes I question my august scan ans wonder if it was brewing but the ct couldn’t see it yet. My original met never did show up on CT and was picked up on a pet and mri (although the mri never could diagnose it definitively as it had some weird behaviours) .
I most definitely can go back to Abraxane pending I haven’t already exhausted it (17 treatments in so far ) and it’s been fairly easy side effect wise. It’s been decent in comparison to FEC.
Guess we will see what the scan says. I think her other rationale for taking a chemo break is that she feels I respond well to endocrine therapy. So in saying that, it might slow things down a bit and keep it in control.
It’s hard to say. She gave me the option of going to 8 cycles if I felt like it but in doing that we risk resistance to Abraxane , and having to hop on another toxic therapy without a break. my counts are having trouble rebounding so it’s really about benefit to risk. It might be nice having a chemo free summer.I don’t know. I flip flop on how I feel about it. Seeing so many others doing it a different way makes me question things but I’m sure we will come to a sensible plan lo
0 -
Simone, from the beginning my onc has used three months as my standard scan interval, using PET-CT unless there has been some reason to have a CT with Contrast or an MRI instead. At one point, I asked if we could lengthen the interval, and she said we could do four months. I could tell she preferred three but wanted to pay attention to my QOL request. Well, that four-month interval did not last long because my TMs rose, and a scan showed progression. My TMs typically forecast what a future scan will show. The progressions have not been extreme, but also not anything for a wait-and-see approach. It's my liver, after all. I see you have bone mets, but what is "other"?
I just went from scans every *nine weeks* to every twelve weeks. This is the protocol for my clinical trial. The first year nine weeks, the second year twelve weeks, and after that (please please!) I think it is sixteen weeks. They do a PET-CT, then a CT with Contrast on the same day. Also trial protocol. I think they are doing a sub-study comparing the two scan modalities. That should be interesting because I think there must be a larger-than-average number of ILC patients in the trial since the targeted mutation is more common in ILC than in IDC, and sometimes ILC is hard to image. In fact, we suspect there might have been unseen ILC in the bile duct. (And that saga is a whole 'nother thread.)
B-A-P there is always the option of a second opinion if it will help you decide or help you feel more comfortable with your treatment plan, right?
0 -
Shetland, I had cancer in two lymph nodes (supraclavicular and mediastinum). I had 3 bone mets, all small, the largest was 8 mm.
You're doing well on your trial. My sister had ILC BC also. They got it before it spread but her tumor was hugh by the time it showed up on a scan. ILC is sneaky.
0 -
Shetland raised a good point about scan frequency. I don’t have visceral mets so that may be part of the reason my MO had suggested longer intervals. And the rest of it may be that the drug combo of Herceptin and Perjeta tends to give fairly long PFS to those of us who are lucky enough to respond to it. That certainly makes me more comfortable with stretching out my time between scans, at least for now.
My tumor marker results have not been helpful, but the doc still takes them regularly so if they DID go above 100, well, that would certainly give a signal that a scan is needed.
I am absolutely not lackadaisical about getting my H&P every three weeks or taking my anastrozole every day. But right now, I feel okay about scanning less often.
B-A-P glad you did get a good response to the chemo, sounds like you have some tough decision making ahead. Good suggestion from Shetland Pony to get a second opinion if that’s an option.
0 -
Wow, I like this topic: scan frequency. In several other threads I stressed the importance of practice here in LT to alternate between PET/CT/MRI and ultrasound scans for those with visceral/lymph-node involvement/ex-involvement. My wife had 2 times things that were <2 mm spotted on ultrasound when CT/MRIs were clear. Ultrasound is cheap, fast and results are there right away after the procedure - what can be better? Saulius
0 -
Adding in to the scan frequency topic, I’ve been on 4 month cycles from the beginning, with every other month MO visits. My original MO and my current one alternate CT and MRI, both with contrast. For some reason my insurance would not cover a PET scan when current MO wanted a better look at my liver mets to decide if ablation should be recommended. Interestingly, as Saulius said, when I was sent for a consult with an IR, he used ultrasound to visualize the mets and see if they were treatable with ablation. He said they were and Ihad the procedure in February. I believe I read that MRI was good for seeing liver mets, which is all I had before ablation. Maybe that’s why I was denied PET coverage? (I’ve also had bone scans about once a year but so far they’ve been clear.)
0 -
Bonus with ultrasound is no radiation
0 -
Shetland/Olma
I have spoken to my Naturpathic oncologist as well and we have been weighing the options. At first he said that there was something to be said for Kicking it while it's down, but as we spoke further, the thought of beating my body down further, maybe gaining resistance to Abraxane, he felt 6 cycles would be the best option, and then see.
I could seek another opinion from another oncologist- I currently see the head of the breast cancer dept. I'm not against what she is saying to me. I feel like she is keeping me in mind and is making the decision up to me. We did decide to see what the scans say and go from there. It isn't easy. It seems like both options have pros and cons and I am ready to be free from IV Chemo and use it again if needed. As for maintenance , they feel Tamoxifen would be enough to trial for a little bit. I don't know if i have the ESR mutation or not but If I knew, I would feel a lot better about my decision. My NAT Onc, thought letrozole failed me as I have no body fat and figured that I might have gotten longer remission if I stayed on tamoxifen to block the estrogen instead. I just don't know. I think the only way to find out is to try, and to hope it works enough to not have a massive blow up in tumours like last time. I do think taking a chemo break isn't a terrible thing. It'll let my body rest to be able to better tolerate another therapy. I might ask if we could do TM monitoring during to see if we need to scan earlier. TM monitoring is not regularly done here but I wonder if she would humour me if I decided to do a break, then tamox, hmmm
0 -
I'm learning a lot here. Thank you. I will definitely ask about doses and an imaging schedule. I don't know if I will stay on the Xgeva or not either. I would love to improve my QOL particularly the fatigue and aches as I do still work and that has been a challenge in my job. I have a feeling some of that aching is arthritis and not just medication effects. There was some uptake in my right breast that was near my lumpectomy scar. The CT shows thickening of the skin and my MO referred to it as scar tissue. I never did any reconstruction after my surgery. It's slightly scary that the area would show up on the PET even if it is scar tissue. I want to go over that in more detail with her also.
0 -
An interesting observation I just made regarding the term NED - I usually never see the notes that the MO or NP have made in my chart but this week the notes were uploaded to my patient portal. And, every scan date was there with the notation NED after it, as applicable. So..the doctors ARE using that term, just not when they talk to me during the visits.
I also saw at the bottom of the chart - Treatment Intent: Palliative, Prognosis: Good. Well, nice to see I have a “good” prognosis with an incurable illness. I guess I’ll take it, it could be much worse.
I am guessing they’ve started uploading the notes because of the change in HIPAA regs or maybe it was just a mistake.
Hope everyone in the USA is enjoying the long weekend
0 -
Simone and others: I get my PET scan every 6 months. My every three weeks H&P is well tolerated.
Olma; Take "prognosis:good" as meaning you are good. More time.
0 -
Olma - how does your primary show up or is it completely gone? Sorry if you've mentioned this elsewhere or even ages ago (you didn't have it removed yet, correct?)
Is a PET the only way to determine NED? The CT and MRIs just note the bone scarring but I only have contrast with the CT. Seems like some sort of tracer needs to be involved? (original diagnostics are still lost in the NHS ether... somewhere... including my one and only bone scan).
0 -
Sondra, that's correct, I never had breast surgery. On my first NED scan, the radiologist referred to “the surgical site" in my breast which my MO got a kick out of. Basically, they can see that there was infiltration from the duct I think, but no hypermetabolic activity and no mass remains. Just scarring I guess. Some of the recent ones don't mention anything about the breast at all.
I also had a mammogram and Ultrasound not too long ago and they saw “focal asymmetry" at the tumor site, which I think means a dense area but not a well defined mass.
I had a 2.4 cm tumor which was palpable and in an easy to access area at the perimeter of my breast and I no longer feel anything there.
They usually do mention the sclerotic lesions where the bone mets were active but again, no hypermetabolic activity is seen
0 -
Just popping in here, hoping to be part of the club again. CT done today and MRI tomorrow, Results Weds. As of my halfway scan, Most of my tumours resolved. My largest one was at least 50% reduced ( 4 cm initially but couldn't be measured at the half way but they said no bigger than 2cm), and the ones that did show up were teeny tiny. I've had 9 more tx's since then so i'm hopeful.
Chemo break coming up I think and endocrine to restart. Hoping that can control things. I went from NED to extensive liver mets withing a 4 month span. I'm afraid if it returns, it'll be even worse.
Anyhoo, fingers crossed!
0 -
FYI: MBC MEET UP CANCELED Today due to US Holiday. See you next week!
Also, in trying to cancel the meeting for today, a mistake was made and it canceled the registration of some people. OUR sincerest apologies. Please re-register, and join us!
0 -
Good news on the tumors shrinking, BAP. Rooting for you and good results this week!
0 -
BAP: good news on the shrinkage. Hope even more get zapped!!
0 -
BAP, good news on the tumors shrinking. Hoping you get good news from your scans this week. Please let us know how that turns out.
0 -
Thanks guys! I will. Hopefully I'll know tomorrow!
0 -
Hello friends- I'm going to cross post this.
SO . CT scan after 18 treatments of Abraxane = "There is a small focus of decreased attenuation anterior to the IVC on series 6image 20 measuring 1.5 cm which is difficult to perceive. It is mildly regressed in comparison with previous exam." This met started at 4 cm, So this is great ! MRi to compare ( but first one since recurrence so no baseline ) as well did show the other small mets that were seen on my previous CT 12 weeks ago. It said they could see 4 spots that were rim enhancing only and between 4-6 mm only. These could not be seen on the CT. Oncologist said that it's a beautiful response and that those spots could be dead or dying in the centres. This is similar to what happened my first time around where the MRI showed a lit up rim but faded centre. Corresponding Pet scan showed no activity.. So I'm hoping that this is the case here.
I was a little bummed only because my half way scan was just so significantly good, I thought surely 9 more treatments would totally obliterate it. BUT it IS good news. Right now the plan is to stop Abraxane , start tamoxifen again and rescan in 10-12 weeks. She really felt like this was the best we were going to get from this drug at this point in time and that it would be nice to have a chemo free summer.. and just hope that endocrine therapy keeps things quiet.
My MRI also said there is some pseudocirrosis on the go which she didn't even mention at all ( I read it on my report) I know it can be from treatment/ mets , but I mean from what I have read, it's not necessarily a good thing. But I don't know enough about it to have a full idea of what I'm looking at here. Has anyone here dealt with that?
So not NED .. maybe NEAD if those buggers are asleep. That's wishful thinking but a girl can dream lol
0 -
Sounds good, BAP. Cheers to a chemo free summer, and to Tamoxifen doing it’s work to keep things clear.
0 -
well darn it BAP, I was rooting for you. You still got good news though. Time to celebrate a chemo free summer.
0 -
thanks guys. I was really really hoping but it is still good news. I know it could be opposite and for that I am grateful. Never know I could still be here again someday.
0 -
BAP, I already wrote in another thread but I can assure you it is very good news. You are young and strong, and you can push back against this disease. And remember: once a president - forever a president:) I mean you eternally belong to this thread!:) Saulius
0 -
BAP - good news on your scan and the chemo free summer! Tamoxifen will do it's job and keep things clear.
0
