Stage IV NED crew : lets support each other
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momo, Congrats on being NED! I know what you mean about losing fb friends. I was in a fb group and recently left. It became so sad to see posts of people struggling and those that have passed. It is hard sometimes to remain positive
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Hi mom of 3
Living with stage 4 is a rollercoaster. I am 3 years and 4 months on from my diagnosis. I went over 6 years after finishing treatment for primary bc so it was a huge shock.
I think all we can do is recognise that there will be highs and lows. You have done so well. Don’t be too hard on yourself. Embrace joy wherever you can and see if you can get some counselling. That helped me.
I have a scan in August. This one is going to be tough because in March I dropped Perjeta because of Covid. Having the Herceptin injection helps to reduce the time needed for treatment. I feel better, but has it let the cancer back in?
I wish you all the best. Let us know how you go.
Liz x0 -
I am right there with you on the scan anxiety. : ) I was due for a six month scan back in March but cancelled it due to COVID.
New appointment is next week and I am nervous since it's been nine months since last scanand also I have been off Xgeva for 7 although I'm not sure how much difference the Xgeva makes
I am really really hoping for another NED scan this time because I want to take an extended vacation in September when my son gets married.
Just had my required echocardiogram to continue Herceptin and it was good. Really need this PET scan to be the same.
Also, next week is my three year “cancerversary” ie three years since my lump appeared. October will be three years since I started treatment. Grateful to have made it this far
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Hi, everyone.
I was originally diagnosed with invasive lobular carcinoma of the left breast back in 11/2012. I had chemo, rads, and a double mastectomy. I took Tamoxifen for 7 years. As of Feb 2020, I joined the bone mets club. I started treatment in March, which consists of Faslodex, Ibrance, and will be starting Zometa next week. As of last week, my PET showed NEAD. There is some inflammation in a stomach node, which could be something, as apparently lobular likes to move to the stomach, but it has stayed stable.
The last six months have been a crazy whirlwind of emotions. I always knew my cancer could (and probably would) come back, especially since I was so young when I was originally diagnosed at 33. But I've spent the last few months believing this was a death sentence, and that I maybe had three years left to go. To know that the treatment is working (for now at least) has given me a new lease on life.
Anyway - I just wanted to say hi.
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Dear Lawgirljen. Hi:) My wife was diagnosed stage IV de novo with liver full of mets at 33, with a 2 year old baby on our hands. Initially doctor's scared faces told us we had not years, maybe months. And now it is 3 years. And she has been NED for more than 2 years, and still on the first line therapy. And so you will be for a long time to come, maybe forever. Ups and downs will always be there but let's not loose direction and hope.
Today is her full-body CT scan. Scanxiety kickin' in, my heart shivers:/ Let's pray she's still NED. I believe it. I'll keep you all posted... Saulius
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good news Lawgirljen on the nead! And best wishes for good results for your wife Saulius
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Praying for a good scan today Saulius.
Lawgirlgen,
Congrats on being NEAD!
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Phiuuu, today Sandra's full-body CT results came in - all still NED!:) I am still shivering. Very symbolic, as in 2012 on this day (04/08) we got married, and then in 2017 on this day we sat in doctor's office and received these terrible news of terminal cancer... Hugs to everyone, Saulius
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Good news always brings a smile
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Happy Anniversary Saulius and Sandra! Happy to hear Sandra is still NED. It's nice to start the day with good news.
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very happy to read this good newstoday, Saulius, hugs to both of you xo
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Aaaaa, you all are awesome!:) Thank you so much... Saulius
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woo hoo just got my own good news in the mail. Last Thursday's scan shows sclerotic lesions with “no hyper metabolic activity" and organs appear unremarkable. Another six months in NED land for me.
I was nervous because I won't see my doctor til the 21st but I requested my own report anyway.
Probably would have called the office if it wasn't good, but happy I don't have to.
Wishing us all a happy extended journey in the land of NED/Nead
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your posts give me hope. Much needed hope. I have next scan in sept. Would like it earlier tho but every 3 mos. congrats to all here who are NED. Praying I get this news next too.
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woohoo Olma!
Dittkermann, good luck on your next scan. Let us know how that goes.
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thank you for the well wishes ladies
dkittleman , glad to spread a bit of hope and I’m keeping fingers and toes crossed for your next scan in September
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Yay, Olma, we celebrate with you! Dear dkittleman, your scans will be good, holding our fists! Saulius
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Great news Salius/ Sandra and Olma! I’m. So pleased folk post their results and share their thoughts....reassuring for all of us even if the news isn’t always the best.
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I think I can now say I’m NED. 😁 My bone scan didn’t show anything new and even though my T11 showed as active, that could have been just an artifact of the radiation according to my RO. I’ll have a follow up MRI in 3 months. Assuming that rads got rid of those lingering cells in my right breast and armpit, I am 1 month NED and counting. Woohoo
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Olma , I wanted to post some celebratory GIFs but could not being IT challenged me.
Thumbs up , happy dance and may it continue for many years
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So happy to hear yourgood news, Saulius and Sandra! Good news for any of us is good news for all of us.
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Whoohoo cyathea! Congrats!
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Dear Cyathea, congratulations on super-news!:> Saulius
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just poppin in to say my scan was also still clear !!
It mentioned that my liver had a slightly diminished attenuation adjacent to the falciform ligament and queried focal fat with a “?” Apparently it was on my last scan as well and it unchanged. Has anyone else experienced that before ? My liver was completely clear all my scans before the last two. My MO has not mentioned it at all and I feel at this point if it was a concern they would look into it by now. But still, seeing anything other than “unremarkable “ sends me into anxiety.
I should however be rejoicing that it did say “no metastatic phenomenon is seen today “
why is it so hard to accept good news ?0 -
Good Afternoon from Cape Cod
I have been away from the boards for moooonths But back I have been stage 4 for 8+ years and NEAD off and on. Only spread has been to my adrenal gland -it comes it goes it comes back and then I change treatment I have been going for treatment every 3 weeks for 9 years - I am so OVER it, but dont like the alternative. My onc recommended and I jsut finished 5 SBRT treatments PET scan at the end of September to see if it eliminated or stopped the little bugger from growing. Fingers crossed If that is the case, I will not need to return to regular treatment until it reappears My kids were 18 and 13 when I was DX stage 3. They are now almost 27 and 22. The break from typical treatment and some of the long term side effects are diminishing. Love that
PTSD and survivor's guilt - just lovely companions
Gentle hugs and hope we all continue on a path to NEAD with no or only few bumps a long the way
Nel
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Nel, yay!! for 8+ years, and cheers to many more. Gives all of us hope!
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hey glad to see more good news and good wishes here!
cyathea, happy your scan is looking good!
B-A-P - glad to see you again, and I do know what you mean about not accepting good news AND the way things are worded on scan reports sometimes. My bone mets were described as "moderately widespread" on the first scan and they mentioned areas on the hip and rib, then on some subsequent scans only a couple areas on the spine are mentioned, now this last one said "sclerotic lesions throughout the axial skeleton“ so like, did I have more lesions appear that were halted by the medication or do they just not talk about all of them all the time?
For now, I just set my focus on the "no hyper metabolic activity" part because that means no change in medication, no local treatment to be considered, and life goes on as usual for six more months. (I am sure my doctor is going to agree with this!)
Also, at my center there are different radiologists reading the films each time, not always the same doctor so I guess they emphasize certain things and/or see things differently. My second scan, the doc writing my report thought the appearance of the ducts was from breast surgery, lol, which I did not have. Last scan they talked about my thyroid looking enlarged which led to me having to have an ultrasound & appointments with an endocrinologist which uncovered nothing but benign nodules so far. But this time they said nothing about my thyroid. Sometimes they talk about my uterine fibroids, a couple of times they did not. I have not had liver involvement so I am not familiar with terminology around that - doesn't hurt to ask your doctor about it, but I do think there could be an element of the radiologists trying to be thorough (especially when there is nothing more remarkable for them to include in the reports!).
NEL - thanks for sharing with us and keep on hanging in there! I do know what you mean about being "so over" those every three weeks at the cancer center for HER2+ treatment. The Herceptin & Perjeta injection (PHESGO) just got approved. I hope the next step could be to let us use it at home, like diabetics inject insulin at home. Or even an oral medication! They came up with oral Taxol, why not oral Herceptin. Wonder if either of those things will ever happen in my lifetime.
Anotherone - thank you and it's the thought that counts re: gifs
I am inserting a happy dance gif here for all of us,won't know if it works til I hit submit though, so let's see.
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Olma,
Yes you're right and all of that in that it really depends on who's doing the reports. And a good friend of mine also said the same thing. I 'm the type to be triggered due to having such a delayed diagnosis and a shooing away of my symptoms. Symptoms that I had for 2 years leading up to someone finally giving my a biopsy, but not before accusing me of making my nipple bleed. I was 30 at the time so BC was on no ones radar but mine. Then when I had a swollen node that I asked my MO (who at the time I was referred to bc my biopsy of my duct showed only dcis at the time) to check out, she couldn't feel it but I could. I couldn't close my arm.. and 5 weeks later after an MRI, not only did it show my entire breast light up, but hey, that lymph node too.. 1.6 cm at that... and a few more.. BUT still it wasn't enough to convince them as to how bad it was.. Mammo then showed extensive calcifications and they were like " don't worry it's just a bunch of DCIS, you need a mastectomy!"
and then they did a node biopsy, which was positive.. and then things moved along quite quickly from there... but the stage 4 dx lingered over my head for a while bc the imaging never diefinitively said my teeny liver lesion was a met. It went a way as a hotspot the same time my breast cleared so that was the determiner. ANYHOO, I always feel like I have to advocate for myself and it's hard to feel like I have to . but I do have a great relationship with my Dr now so one of theses days I will trust. but it takes time. And I truly do a lot to support my body. I think it's hard to believe sometimes that I can't manage a long term remission for a long time. So far so good but as we know, it's a very unpredictable disease . Should be rejoicing though. Seriously, I realize I;m very lucky
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Hi all
I’m so upset. Scans showed few more spots on spine. Seeing MO tmrw for usual appt but I pray he isn’t negative. I need hope. I am so upset. Has anyone else had this but then it got better w different treatment? Any words of encouragement pls I need that so much right now.
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