Stage IV NED crew : lets support each other
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Congrats Philly! Welcome to the NED crew
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Wow! I am several hundred posts behind on this thread, but so pleased to see so many remain NED. At 8+ years of NED, I continue to live an almost normal life. My remaining dog* died this summer and my long term mo had the nerve to move back to her home country to care for elderly parents (She was awesome), but that’s just life. I’m still working full time and my class of 23 first graders keeps me on my toes.
Wishing you all continued health and happiness.
* I’m going to adopt another dog when I retire. I really miss having a furry friend but have been enjoying the freedom that being pet free has given me
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Hello lovely ladies.... I got scan results back this morning - my onc is wonderful and actually texts me - still NED. At this point its been 7 years. I think I have mentioned that I have taken Herceptin "vacations" of up to 6 mo, but never gone off completely. (I am HER2+) Now that I can get an injection, I can't see myself giving it up since it's so easy. I don't go every 3 weeks - more like every 6, and get Xgeva once a quarter.
AllyBee - thinking of you. Please give us an update. I also had mets in my spine and spinal fluid when first diagnosed. I had 3 weeks of radiation (inpatient) every day..... zapped it completely. I was also in danger of incontinence (actually, I think I was)….. I think they were worried I'd never walk again and I have been totally fine for several years - hiking and running. Radiation can do wonders.... sending hugs and good thoughts.
XO
Andrea
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Andrea, that so encouraging to hear. I'm actually just sitting the radiation waiting room at the moment, going to do 10 rounds, hoping to have great results like you. I felt like because it was on the spinal fluid it was game over. I went into work today and told them I would be taking indefinite leave until things settle down, I feel like a huge weight has been lifted. I struggled through work for the past 3 years of treatment. Time to just be a mum for a while.
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Hi Elderberry
I have been on HP solely since August 2017. I think the emotional rollercoaster is a good way to describe our experience with MBC. In Sept I had a great scan report where I was told by the radiographer that my original area of concern ( LN in mediastinum) presented as a non cancer patient and there was no measurable disease or distant metastasis. Thus I should be much more relaxed. Unfortunately it's not quite so simple whether we are NEAD or otherwise, it's still MBC. The physical toll is tolerable, but coping with the disease on going is a challenge for me. I have good and bad days.
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Hi Andrea
Great news on your scan results! Fab news. I may have asked you this before, but do you have the loading dose of H after your treatment breaks? If so do you tolerate the higher dose? Finally, how long had you been NEAD before you decided to take a break?
I sometimes wonder to have a break but my tumour involved mediastinum not bone only.
Sorry, loads of questions....
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Hi all - Congrats vevs and all others reporting NED/NEAD! I was also recently scanned and learned that I am still NEAD. So I’m happy to stay on this thread with all of you! Love reading all of the joyful news. Wishing everyone continued blessings.
Love to all,Lauren
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Congrats Lauren, Liz, Andrea, Philly, and anyone else I may have missed while playing catch-up! Love seeing all the good news!
Sending lots of positive energy your way, AllyBee! I hope you'll be back on the NEAD train again soon!
xoxo, Erin
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Thank you Erin
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Jackboo - funny you ask about the loading dose.....I don't get one anymore. My oncologist doesn't think they are necessary, and for a long time it wasn't an issue. This last year something changed with the pharmacy regulations, I think.. and I found myself getting a loading dose very unexpectedly and I didn't tolerate it that well. It wasn't terrible - but definitely noticeable. I was frustrated because it was unexpected and took 90 minutes, which I hadn't planned for (that sounds dumb, I realize) but I didn't want to just leave - so I got it. The next time I went back they tried to do it again and I refused, so they called my onc and she told them they didn't need give it to me, and now there is a "note in my chart" that says I don't need one. ( I am sure the notes in my chart say a lot more than that.... those nurses probably think I am insane.) Now that I think about it, I wonder if they can even give loading doses in an injection? Hmmmmm…...
And, it had been about 3 years of NED when I took a break of about 6 months. This year I have gone "fairly" consistently... but by that I mean once a month or a little more - maybe once every 6 weeks.
I have/had two very small tumors in my liver, too. Not just my bones.
XO
Andi
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AllyBee, kick it's ass!!
Well, I decided to see a counselor after all because I don't know of anything else to do. My first session is tonight and I'll likely discuss the anger, depression, anxiety, PTSD, grief that I've been feeling since my last scans (which turned out normal, thank goodness!) although I don't know if the counselor will have that much time! I also signed up for a Restorative Yoga series in November as recommended by my MO. I guess trying new things, although they make my anxiety sky-rocket, could be of help, so here goes nothing!
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Thank you rena-Helene. I really don't post much but the support I've received since my progression is so heart warming.
Day 5/10 of spine rads today, then appointment to discuss chemo next Tuesday. I hope I will feel better getting a plan in place. I feel a bit crappy at the moment but I'm hoping it's just the steroids.
On a brighter note, I put up my Christmas tree. I love Christmas and need longer than a month to enjoy it.
I hope all you ladies are doing well and more NED stories to come.
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Hi Andrea,
Thanks for this. I think I will delay rather than skip HP for now but the details you have shared are really useful- many thanks. I certainly want to avoid the loading dose.
L
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Hi all, allow me a moment to vent a little bit. I feel like my new status is "NED BUT...."
As I shared earlier, no evidence of active disease on my last scan BUT ....
.....radiologist noted enlarged thyroid. I went for the ultrasound last week and that didn't "clear" me. My oncologist wants me to see an endo and get a fine needle biopsy. So I must have nodules or something...have not seen the US report yet. Now I am living in suspense with this, hoping it does not turn out to be another cancer. Endo appt is not til 12/3 /19 but perhaps earlier if another appt opens up. Trying to deal with anxiety from this. Women who have had breast cancer have an elevated risk for thyroid cancer, or so I have read. I need to just put this out of my mind til my appt comes up as there isn't anything else I can do.
....loose tooth I wrote about broke last night. Root remains in gum. Dentist has not responded to me yet. Its right in the front so I am indeed the Halloween jack o lantern that I feared I would be now.
.....last few BP readings have been sky high. Onc gave me another med to take til I can get in to see cardio in three weeks.
No breast cancer progression is great but I do feel like I am falling apart at the seams here with all this stuff going wrong! And co-ordinating all these appointments is a big time suck! All in time for the upcoming holidays, too.
I always tell myself things could be worse and I know they could be, but still feeling a bit stressed about all this happening at once! A second cancer, the possibility of ONJ, now losing my teeth and hypertension --- OH MY! I never feel (or act) my age but I am feeling it today.
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Hi Olma
Like every second woman without BC has issues with thyroid which are not cancerous , why would you think yours are ?
BP is an issue , agree.. getting older is not fun -this world has not been designed very well , eh ..
Good luck with sorting the tooth ; with teeth anything can be sorted with money ..
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Hi Olma,
Sounds like you're going through a rough time. I would take a deep breath. I don't know about you but I've had so many biopsies that turned out to be benign. I think the docs just always assume the worst. There isn't anything you can do but wait until they figure out what is wrong. Don't let that ruin your days.
On the tooth, I can only imagine. I think I would want to put a bag on my head. Lol. I hope the dentist calls you soon.
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hey ladies, thanks for the support
Simone I absolutely agree that docs tend to assume worst case and over scrutinize sometimes. Before cancer, believe me I was the first one to dismiss the possibility of cancer when having symptoms or anything that could remotely be a serious illness. When my menopause was starting I had very heavy periods and doctor sent me for a biopsy on my uterus...I wasn’t worried for a single second and thought he was over dramatizing. But then a few years later, I went to have a breast lump checked out and it WAS cancer! So I’m a little more leery now, if you know what I mean. :-
However, also agree with anotherone that most of these nodules are not cancer and even when they are, thyroid cancer is a weak, “ wussy “ cancer compared to what we’ve got. If I’m keeping the big monster at bay for now, the little monster should be easy to beat...not that I want to test it or anything.
With my tooth, one saving grace is that my mouth is small and when I talk the space is not so obvious. Only when I crack a big smile is it obvious. Funny story, when I was having my implants on the two teeth front and center, I was supposed to wear a flipper for the eight weeks, between extractions and the next surgery. The flipper was so annoying to me, I hardly wore it and I really didn’t get too many funny looks. 😁😆just have to remember to Mona Lisa smile and no cheesy grins until I get in to see the dentist.
And you are so right about money...if I wasn’t on Xgeva I would be already working on an implant for this baby. That’s what credit cards are for!!!!! But the damn Xgeva is complicating things immensely. Cancer sucks (as we all know. )
Just have to deep breathe and let go of anxiety until the appointment dates arrive.
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Olma, I've had a fine needle biopsy too for my thyroid. All those contrast agents we take and radiation we're exposed too...Fortunately it wasn't anything.
I am also missing a tooth, which happened just a month before starting Zometa. My dentist was so disappointed to say goodbye to implants. Haha.
I had my MO appointment yesterday at which the doctor told me my tumor markers from 6 months ago were AOK. Then he started talking about studies showing the low dose of Tamoxifen I'm on is proving a good bet. So I asked if we could switch to every other day on that dose. He said, sorry, there are no studies there. I switched strategy and asked about taking a 3-4 month break. He had to concede that there are studies there. SO I am taking a break!! (After I get my tumor marker results.) Of course none of the studies are on Stage IV, but at 12 years out, I probably fit right in with those study participants. He does want me to have a CT scan (which I haven't had in years) after the break. We shall see...
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Congrats on getting a break Heidihill! I dream of the day when I am in the same position. What kind of mets did you have?
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heidi wow amazing news!!! congratulations 🎉🎊🍾🎈!!!! I’m so happy for you! Please keep us posted of what you end up doing and how things are going lov
Maybe I am wrong about this but It seems like if one has been NEAD/NED for about 10 years then they are possibly offered to take a break/be off the medications?
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Hi Heidi, thanks for commiserating with me! Glad your FNA on the thyroid showed up negative. I know the odds are with me, I am hoping mine will be too. UGH to more needles and more anxiety, though.
Congrats on taking a "vacation" and I definitely hope to be in your situation when I "grow up" - I would love a vacation from AI's ...but I know it is way too soon, so I continue slagging through. My MO once brought up the subject of exceptional responders and long term survival and she mentioned that docs at the center have discussed "developing a protocol" to taper LT survivors off meds. But then no one wants to be first and develop that protocol since there is so little research to lean on. Hoping to get to 10 years and that by then, it is common for all of us to finish meds for good!
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Heidi - that is great news! So glad you get to take a vacation! I am curious about the lack of CT scans. Do you just not get them, and assume if your tumor markers are stable that all is AOK? I get CT's every six months. The last two - actually CT and bone scan combo - have made me really sick.... I have literally been down for the count for 4-5 days afterwards - like in bed. I am allergic to the contrast so take steroids and then benedryl before getting it.... but I don't know if it's that, or the contrast itself or perhaps the injection I get prior to the bone scan... but the last two have been awful. I need to mention it to my oncologist and keep forgetting. Does anyone else have this issue? I am going to ask about going to yearly scans, with tumor markers more frequently to make sure I am hanging in there.
XO
Andi
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Simone, I had spinal mets and mets in chest wall lymph nodes.
Andi, like you I am allergic to the contrast agents and need to be pre-medicated (prednisone, antihistamine). Plus there's always the drill of finding a vein as these have gone into hiding over the years. I am also very claustrophobic. I have been happy not to do CT scans, only annual abdominal ultrasounds and chest x-rays in addition to half-yearly tumor marker and other blood tests. I don't feel awful after scans, maybe because I am just so happy to be out of there.
Philly, MO wants me to keep a diary, not exactly sure what for. If I feel the need to write something down for him I will do so (and share with you guys), but I am not expecting too many changes. I don't know, I think a lot of things going on is about aging (62 going on 70) but if my skin suddenly becomes more elastic, you guys will be the first to know!!
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just checking in. Still NeD
One met to the liver that has been gone for a year now
Still doing scans every 4 months and then will spread out to 6 if I continue this way.
Starting zometa in February as I have low bone density already (I'm 32) and to prevent bone Mets
Interested to see how I will tolerate that !
Hope everyone has a merry Christmas
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Nice one BAP. Me too re NED according to scan report a week or so ago.
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good to hear BAP and Merry Christmas to you too
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cheers! PET scan all clear
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Dear all, are there people who are pre-menopausal, ER-/PR-/HER2+, who are NED? I'd be very thankful if someone with these conditions could tell me what happens when chemo-induced menopause ends, i.e. heat-waves end, maybe menses start. The thing is my 36 year old wife is strongly ER-/PR- (last biopsy from breast showed ER 0%, PR 0%) but last time when she relapsed in her left breast her menses started just at the same time and I am trying to find connections here, as now, after 6 months of no-chemo, her heat-waves have subsided again. She's NED again after mastectomy and radiation, the liver buggers have not come back in past 20 months. I mean, as she is ER-/PR-, the disease should not theoretically feed on ER&PR but I am researching if there might be some correlating factors and unknown pathways. Has that bothered you or maybe you were worried about the same, have you done any ER/PR tests, maybe you had your ovaries removed? Any advice or thought would be very important for us. You could write it here, or could PM me if you feel that is more appropriate. I joined not so long ago here, so don't know how exactly it all works (I am always for open discussions myself)? Thank you very much in advance, husband Saulius
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Hi everyone,
Just wondering what percentage of ned'ers have had a masectomy? 50%? 90%?
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Hi Saulius,
I'm was NED until recently but I still stop by here because it's one of my favourite threads. I am triple negative so technically my hormones shouldn't make any difference to my cancer but I have also noticed a link between my period and my cancer. My original cancer turned up pretty soon after my period returned after having my son and my brain met appeared after my period returned after stopping chemo. Could all just be coincidence though.
There was an article on here ages ago about it. I'll see if I can find it.
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