Stage IV NED crew : lets support each other
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Hello everyone. I don’t quite know what NED means. My last PET showed much reduced activity everywhere, and a few spots that looked like liver mets are gone. My doctor gave me a high 5 when she walked in the room. I am now seeing her every three months, with monthly injections of Faslodex and my 75 mg of Ibrance. I am feeling good, eating better, feeling stronger. I am greatly relieved after being diagnosed .stage IV in 2020. I feel the three months between appointments is a good sign? I think after studying up a bit I would be considered in partial remission, but that is an improvement, so I will take it.
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Gigil - that is great news! Three months between appts is a a good sign that you are doing well on Ibrance/Faslodex. I am on that same schedule and get my Faslodex injection and blood test at a satellite clinic closer to my house and have scans every 3-4 months and see my oncologist to review the scans. If/When treatment needs to change I know I will need to go to the cancer center more often so I appreciate the less frequent trips. Stable disease (no new mets or increased size in mets) is good, partial remission is great! It's also wonderful to hear that some liver mets are gone. Keep on keeping on:)
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Dear gigil, that what you tell is great news. NED means no-evidence-of-disease. You are getting there, and high 5 from your MO is the best thing in the world!:)
Dear aprilgirl1, good luck with your scans - they will be good! Hugs,
Saulius
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Gigi - Good question (I've been wondering just what NED means, along with it's significance too), and congratulations!
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Thanks for the positive words everyone. I am so grateful things seem to be improving. Aprilgirl1, those scans never get easier do they? We will take all of the positive news that we can get, right?
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This thread was so quiet. Wonderful to hear from sisters who are still NEAD. May you continue to be so!!!
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I have gone for 6 months between appointments as that is what my oncologists recommended. I am still working part-time. To be honest, I dont know what to think anymore hope everyone is doing well.
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Hi all,
@Gigil you are so right, scans don't really get easier!
I am relieved / happy to report that my scans were clear and "unremarkable ". This was 5 months in between scans and I am pretty sure I now have 3 years of NEAD scans , almost 4 years with MBC.
Furiously trying to live with cancer as best as I can, like all of y'all as I know this can change at any moment. I still find this to be very surreal as I feel pretty good or at least am used to the meds.1 -
Add me to the list of stage IV Nead. Bone mets only and all sclerotic. Now on 6 month scan schedule, with monthly labs and Fulvestrant/Xgeva at a satellite location closer to home.
Aprilgirl1
Think I saw on another thread that you're planning a trip in September. Where are you going? I have one in November. We will cruise to Greece, Israel, Naples and Rome, then a short trip to Sicily before flying home. Will be gone 18 days. My MO has been really good about stretching the time between injections by a few days each month to accommodate the trip.
I have no idea how long it will be before progression and how long I will feel able to travel abroad, so I'm trying to make the most of it.
Hugs
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Eleanora, your trip sounds fantastic ! Congratulations on your ned scans :)
My husband and I are traveling with friends . We fly in to Lisbon and will have 6 days there. We then head to watch World Cup Rugby games and have tickets at a few cities in France including Marseilles and Burgundy. We have some side trips in France to sightsee, visit wineries and hike . We are finishing our trip in Germany for a few days to see family . We will be gone for about 20 days - which is the longest trip we've taken in a while ! My oncology team has also been helpful in lining things up so i get my fulvestrant shot on 8/28. We bought the World Cup tickets about 18 months ago so to be honest I was not sure if I'd be able to go on this trip. Tickets were by lottery and hard to get so my husband and I figured we could also sell the tickets if I couldn't go. So happy that today I am not pivoting treatment . I usually plan trips 3-5 months in advance so this was an outlier ! Thanks for asking :)
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I listen to a podcast called “I’m Still Here.” A woman named Heather Jose has had MBC for 23 years! And she’s fine. She and her husband do the podcast together.
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Aprilgirl1
Your trip sound fantastic as well. We did a river cruise in June with stops in Germany and France, and my favorite was Strasbourg. My great grandparents emigrated from Germany. A tiny town in the north called Pappenburg. Where is your family?
AJ
Thanks for the podcast recommendation. There's a song called "I'm Still Here" and I once saw Elaine Stritch perform it. Wonderful 😊.
Hugs
Eleanora
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hello. I’m curious whether some of you who have been NED for several years who are also on SSDI have undergone disability determination review? In brief, I’ve been metastatic for over 8 years. The first 4 years of that or so were marked by multiple progressions, chemos/changes of treatments, SBRT etc. Eventually, I tried immunotherapy and for me, for some reason, it worked very well. I’ve now had NED scans for maybe 3 or 4 years. I’m currently only on Hylecta (Herceptin). From the beginning of treatment, I went onto STD, then LTD and SSDI. I’ve had disability reviews several times over the years and my continued SSDI has always been approved. However, earlier this year, I submitted paperwork for the latest review. This week, I’ve received a letter from my state indicating that I am now being subjected to the aforementioned determination review - which seems like an escalation from the review earlier this year. I wonder if other longer-term NED folks have dealt with this? My oncologist recently suggested that I might eventually be able to drop the Hylecta and have no treatment but that scares me for multiple reasons. I realize that among us MBC-ers, this is a good problem to have but I’m now in my late 50’s, been out of the workforce for more than 8 years, and still have permanent issues such as spinal nerve damage and neuropathy. However, if you didn’t know about my illness, you wouldn’t think I am disabled. Just wondering about others’ experiences.
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I just want to celebrate the fact that I am finishing up Year Six with MBC. Entering my seventh year and still NED, and I just convinced my new scan-happy MO to let me wait six months for the next scan, which is scheduled for October. Feeling good with minimal SE’s from anastrozole. Still getting PHESGO as well.
Margarita, it is great to hear you had success with immunotherapy - what kind of immunotherapy did you have if you don’t mind answering?
I have not been on SSDI that long and I am almost at full retirement age, so I have not had any disability review to my knowledge.
I do know, the older one is, the less “employable” you are considered to be and that is supposed to factor in to disability determinations, also health issues other than or peripheral to MBC should factor in. Sorry I am not of more help with this.
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@Olma61, great to hear from you with 6 years NED!
@Margaritams, great to hear from you as well with 3- 4 years of NED and 8 years total with MBC. I am 59 and have not applied for ssdi, yet. I was told I would qualify but I currently feel good and make really good $$ as a real estate broker (self employed so no long term disability ins. etc). I don't have an answer for you but you might try to start a new topic here in the stage IV discussion area? There are a few people I know of on the Ibrance thread that have been NED/NEAD for many years and are on SSDI. I agree with Olma61, it would be hard to get a career restarted in your late 50's with spinal nerve damage and all the rest. MBC has no cure, I hope they don't try to deny your ssdi at this point. Please let us know what immunotherapy worked well for you!
@Eleanora, my husband was born in the US but his parents immigrated from Germany in the late 1950's. His late father was from Stuttgart and his mother from Krefeld. Most of the family that is in Germany is near Frankfurt. We are really looking forward to this trip:)
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Aprilgirl1
My great grandmother was one of 4 sisters. Three of them emigrated in the 1890s, one did not. Her descendants live in Frankfurt, but I have no contact information for them.
We took a cruise on the Rhine in June, and one of the stops was Cologne. As a knitter, I always search for a yarn shop. Found a lovely shop within walking distance of the Cathedral. The owner spoke English and we had a wonderful conversation during which I discovered that her mother was from the town from which my great grandparents emigrated.
Small world indeed 😊
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Thanks Olma61 and Aprilgirl1 for your replies. I admit I'm a little nervous about the SSDI review even though I have sometimes thought about trying to go back to work since I really miss the camaraderie of my co-workers and the intellectual stimulation my work provided. The financial destruction that this disease has wreaked on me and my husband has been profound. My move to STD/LTD and SSDI came about primarily because my prognosis at diagnosis was so grim: Inflammatory BC found in skin, liver and spine upon initial diagnosis. During my first chemo, a social worker from the hospital came by to ask if I had end-of-life plans in place yet. I cried, my husband sent her away in disgust and we both thought I was at death's door. And, because my husband and I worked in overseas jobs, we both quit so that we could be together in the US during whatever time I had left. We've been underfunded ever since and my LTD and SSDI is our primary income, not to mention my basis for Medicare. But I digress…
As you may know, Inflammatory BC (IBC) is considered to be very aggressive and, especially at the time, the statistics provided little to no hope. I responded well initially to Taxol and HP but the HP alone couldn't hold the cancer back. I had surgery and radiation and then I did Kadcyla for a few years and kept that going longer by twice having SBRT to stop small sites of progression. After a new biopsy of a progressive tumor, my oncologist came up with the idea that because I had a high tumor mutational burden, I might be a good candidate for Keytruda. My insurance denied it because it wasn't standard protocol but the MERCK co. provided me with it for free which I had along with Herceptin. It worked extremely well for me (and my strange variety of MBC) and I was NED from my first scan after starting Keytruda - I was on it and NED for about 2.5 years before we stopped it and just kept the Herceptin (Hylecta) which has been my only treatment for about the last 2 years.
I seem to have lost my treatments info in my signature since the updating of this website but my cancer is ER+ PR- and HER2+++ but the mutational burden was a weird thing - I had at least 42 mutations of mostly unknown significance so it also remains a bit of a mystery exactly why I responded so well to Keytruda. Of course, we have no idea how long I'll be able to remain NED so I feel like the SSDI review thing is a bit of a crap-shoot but I'm hoping for the best. Not quite sure what I'd do if they took that away. So much of dealing with this disease is the mental and financial struggle… Thanks for listening. Sorry for the long posts.
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Margarita, WOW. I can't believe what you've been through and im so happy that Keytruda worked so well and so fast. Thank GOD for Merck as they gave you the life saving Keytruda when your medical insurance DENIED it . The amount of people who die due these denials is outrageous -not just in the US but in other countries as well . This disease is devastating and the financial and emotional loss of your career just add to the damage. Chicagoan is a member on here who has been on ssdi for awhile (Ibrance for 6-7 years if I remember correctly )? You might send her a PM to see if she's had this type of ssdi audit .
IBC is very aggressive for sure . I hope this audit is just a weird blip and your ssdi stays as it is.
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Margarita,that's awesome. May you continue to do well.
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Thanks for sharing, Margarita, and I'm so happy Keytruda beat the IBC back for you! Yeah, financial toxicity is a big issue for cancer patients along with everything else we have to deal with, we get all the money worries dumped on us, too.
I did find this info on continuing disability reviews, it is not direct from the SSA but Nolo is a pretty reputable do-it-yourself legal site. Hope the info is helpful
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I decided to pop on here to ask a question. I see some familiar names. I was told 2 months ago I was NED. I had a follow up with a PA because I am in-between oncologists. They are suggesting I drop to every 3 months for the oncologist and told me I won't have anymore scans unless I have symptoms. I vetoed the 3 months because my neutrophils tank on Ibrance and I want to discuss alternative dosing and I want to make sure I am clear for knee replacement surgery as soon as possible.
My questions one. It only took 6 months to be NED. My cancer was in the pleura near or in the lympnodes. Never got an exact answer on that. Is going to every three months to soon?
Second isn it reasonable to not have any future scans until I have symptoms?
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Brutersmom: Here is my opinion. I would think there is some standard of care guidelines (varies by country) for both Ibrance use and also scan followup for stage IV patients.
Blood tests on Ibrance: It seems to be best practice to have a monthly blood tests to check ANC/WBC levels before starting your next packet of Ibrance (especially if your ANC/WBC levels have fluctuated) No need for an onc appt to review blood work. Blood work can be reviewed by phone or mychart message.
Oncologist appt: Seeing the oncologist every 3 or 4 months seems fine, meet to review after scans or if you have symptoms/side effects that need to be discussed.
Scans: should be every 4-6 months. I have never had elevated tumor markers - even when I was dx as stage IV before treatment. Scans should monitor anything brewing and perhaps allow the patient to change treatment before the cancer spreads too far.
Ive been NEAD for a little over 3 years, took me 8 months to have clear or nead scans. I receive a fulvestrant shot monthly so I have to go in for that and they do my blood work at that time.
After 2.5 years of clear scans (checked quarterly) I was told I can have them every 6 months but have opted for every 4 months as I am more comfortable with every 4 months right now.
I am over an hour from my cancer center so I receive my shot and blood test at a smaller clinic closer to my house (affiliated with my cancer ctr). This has been so great for me. I go to the large cancer center for my scans and then a few days after scans meet with my oncologist. The last couple of scans the oncologist allowed me to have a telemed video appt with her as the scans were "nead". While I am stable or nead I really appreciate this flexibility!
I am interested in hearing from those who have been nead for longer than you and I about their surveillance.
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Aprilgirl1. Thanks for the reply. Do you have just one scan to the area mets were found or do the scan lungs, pelvis, and bone?
While searching I found an article on pleural mets and ogliometastic breast cancer. When diagnosed in January they found only one spot and it is a high ER+ at 98% PR 2% and HER2 low. It responded quickly to treatment and so did my ca27.29 blood test. My cancer is a rare cancer, IDC, it is grade 3, and an article from NIH said pleural mets needed to be monitored closely because it has the highest rate of return then all other cancers. I have also heard many people say that there scans find cancer before they have symptoms. I am only NED 8 weeks. This comment has been written on my chart twice now. "Her CA 27-29 continues to decline and her most recent chest CT verifies that this is an informative marker." I will have blood tests monthly. I refused to go to every 3 months right now because (1) I have a new MO next month. (2) I need clearances for surgery and I want to make sure he is in agreement. (3) My neutrophils take two weeks to get back to stage 3 and I want to try alternative dosing. (4) The surgery is knee replacement surgery which is a little trickier due to my limited ability to tolerate NAIDS. Also NAIDS aren't recommend with ibrance and another drug I take and one of the meds to keep me on NAIDS interferes with Ibrance.
I too, hope more people respond.
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@Brutersmom, the pet/ct scans I get are neck to knees. Checking organs and bones for any possible mets. My oncologist orders full scans as mets can pop up in a variety of areas (not just localized).
My stage IV recurrence was in my neck and chest, superclavical nodes and distant nodes (hilar, mediastinal, pre-carinal nodes). Many, many nodes in my chest that were enlarged and lit up with high fdg uptake. Too many nodes to be considered ogliometastic per my oncologist but no spread to organs or bones. There was some discussion if I had a met in my lungs but it was never definitive (ground glass) and disappeared quickly.
I am in your corner for your knee replacement and hope you get the go ahead! Less pain and more mobility once you have recovered from the surgery.
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Thanks. The more I pursue this the more I feel I need to tell them I would like more scans then none. I will see a new oncologist next month and he might have different opinions then the last to. If all else fails, I will call Fox Chase Cancer Hospital for a second opinion. I wasn't happy with the interpretation by the radiologist as the oncologist went over it in detail with me. I have only had 3 ct scans (2 lungs, one pelvic) and a bone scan, in 8 months. There are two other cancer facilities with in an hour of here. Unfortunately I would have to drive there every time. My center is not affiliated with any other cancer hospitals. My hospital views itself as a high ranking cancer facility. They have some good Drs and some that think they know everything. Fox Chase is a bit of a drive and heavy traffic but good for second opinions.
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@brutersmom here is my experience.
I have bone mets. I was diagnosed in 2017. I was not treated as oligo because according to my first PET scan, I had many bone lesions, although only one bone site was biopsied. I am also HER2+ so my infusion visits are every 3 weeks which is relevant to how many times per year I see the MO. So after 4 months of chemo & herceptin/perjeta I was “almost NED”, there was low metabolic activity in a couple of bone sites and my breast tumor had shrunk to nothing. I was seeing the MO every six weeks after that (it is always a divisor of 3 because of the frequency and timing of my infusion visits). My next Pet was 8 months later, NED. She was a believer in minimizing radiation exposure from PET if possible and I also think she did not like doing the peer consult required by my insurance.
From there I was going every 6 months - in April 2019, one of my vertebral mets was active again and I was referred for radiation. Due to the radiation, I waited another 6 months for a scan and it was NED again. So, I was back on the six month schedule for scan. My MO had started seeing me every 9 weeks somewhere in this time frame and that continued.
Now we are in the year 2020, it is COVID time and I changed cancer centers in March of 2020. I started going to a small satellite clinic of a larger cancer center that was closer to my home. At this place, the MO sees me every time I come in for medication (every three weeks) but the visits are usually brief. She asked me at what intervals I was having scans with my previous MO and I told her every six months, and she was fine with that. But because I was a little paranoid over COVID I wound up waiting 9 months for my next scan with this doctor. She was fine with that too.
So, I continued on the same schedule at the same center until May 2022, meet with doctor every 3 weeks and scan every 6 months.
Then I moved to a different state. I went to a large hospital cancer center and this doctor was all minimalist, like “Hey maybe you are cured, let’s just do a yearly scan and I will see you every 3 months”. Even though I was coming in for medication every three weeks still (which he actually told me he would be fine with me trying to go off Herceptin/Perjeta if I wanted to!) Edited to add: I did wind up going off H&P for 5 months due to insurance issues. The doc still thought I should wait 6 months for a scan but I wound up moving and having the scan at my new place.
Then I moved again and I had to switch cancer centers again. I chose an NCI cancer center at a teaching hospital and this doctor is all for having me come every six weeks to see her and get scanned every 3 to 4 months! ETA: I can understand her being cautious my first couple of visits after a 5 month drug holiday, but after the first 2 scans I thought she would relent.
Even though she has my history of continuous NED scans since 2019 and I told her my other doctors had me on a six month schedule for scanning. She let me wait six months over the summer because I told her I am getting sick of all the appointments and I was going to be traveling (which was the truth) but she said “I rarely have a patient on a 6 month scan schedule” and now that I had the scan for October she wants me to go again in January!
I am going to change cancer centers again if I can’t get this place to cooperate with me. Good quality of life right now means I get to enjoy my NED status and not spend my life in doctors waiting rooms and scan machines!
I guess the relevant point of this long story is - different doctors do things differently and once your new MO sees you, he may have different ideas than the NP does. The NP where I am going now is always saying different things than what I discuss with the doctor. Good luck and big congrats on reaching NED status!
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@Olma61 - thanks for adding to this post. Ned scans since 2019 if fantastic and I can see why you prefer to have scans every six months or once a year. I also understand how going in every 3 weeks for herceptin = frequent visits to the cancer center.
In my case since I am er/pr+ and her2- I need monthly fulvestrant shots along with a blood test for Ibrance and now can get these done 20 minutes from home at a regional clinic (same cancer ctr) but see my oncologist every 4 months when I have a scan review. The last 2 scan reviews were telemed (also awesome!) because the scans were still nead . The main cancer center is pretty far from home and the first year I was going there monthly at a minimum. In the 4 years of stage IV I am on my second oncologist at Fred Hutchinson Cancer Center and had about 1 year with a temporary onc. + oncology NP. First one took a family medical leave and came back as research only. They all had the same protocol…same cancer ctr so that must be their standard of care.
@Brutersmom - keep us posted. I still think you need or would want monthly blood tests for Ibrance and scans quarterly or twice a year since this is your first year with stage IV - plus I would think at least one full body scan would be important.
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Thanks for the info. Did anyone have tumor marker blood test the dropped at the same rate as symptoms and were confirmed when they hit normal with a scan. This seems to be what the decision is based on.
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As I happened to post elsewhere today, my tumor markers were absolutely normal when I was diagnosed Stage 4 de Novo so they really have not been relevant for me. The most they have ever risen was a couple of times CA 27.29 went up in the 40s, plus my CA 15-3 has remained in the high 30s, since 2019, after I had rads to the bone. Those slightly elevated TMs might be worrying my current MO but she has not mentioned that to me at all.
I also had a Guardant 360 with her when I first went to her, and I had “tumor mutational burden not detectable” and just one mutation that is not actionable.
I also want to add, I think not doing scans at all until you have symptoms is a bit unusual for a patient with MBC especially when just starting treatment.
And even though I am in favor of longer intervals in my own case, I wouldnt be comfortable just waiting for symptoms esp since tumor marker tests are unreliable for me. The longest I would want to wait between scans is 12 months. Just my personal feeling.
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My tumor markers have never been elevated - even when I was dx stage IV. My cancer center does include them in my monthly blood tests but do not hold a lot of value in them for breast cancer patients from what they have told me .
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