Stage IV NED crew : lets support each other
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Good luck on all upcoming scans! Only good thoughts for the holiday season.
Happy Holiday
Nel
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Got my scans right before Christmas...Still NED! That makes for 7 years clear
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Cafelovr... whoo hoo!! That is fantastic!! Such a blessing!! Keep on doing what your doing!!
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Cafelovr, congratulations!! Such good news
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Yay, cafelovr! That's a great way to start a new year!
Tina
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Yay Linda !! Wonderful News and I agree great way to start the New Year!
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Well, my lymph node came back as breast cancer -- it is still er+/pr+ and hr2-, but I'm leaving you wonderful people for a while. NED can be fickle, but I'm hoping my new treatment will bring him back quickly
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I hope they can get rid of the pesky lymph node mets quickly, nbnotes. I hate when NED plays these silly games.
Happy dancing for you, Linda!
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Nancy, so very sorry to hear those results, but you'll be back soon enough! Hugs to you and best wishes for quick response in the next steps to blast those lymph mets away!
Congratulations, Cafelovr, and ditto on all the other comments! Very nice way to start the New Year.
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That's rotten news, Nancy. I'm hoping NED just went around the corner for a beer. What will your new treatment be?
Tina
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I'm a first time poster here, posting on behalf of my 34 year old sister. The diagnosis profile below is hers. She is a mother of three (youngest is age 2) and was diagnosed with Stage IV out of the gate this summer. She did some radiation and chemo, and is continuing on with Herceptin and Perjeta (though the side effects of the Perjeta for her have been difficult). She met with her doctor last Thursday and they believe she may be NED. There were two "hot spots" on her scan, but the doc couldn't say that they were cancer and so she will have a follow up scan in 60 days to check - and hopefully be able to confirm that she is in fact NED. Assuming she is NED, she is wondering what now? Do women stay NED for long periods of time? What have your experiences been after first becoming NED. Thank you all for your willingness to share your stories in these spaces. She and I have received such tremendous strength of reading your words.
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I'm a first time poster here, posting on behalf of my 34 year old sister. The diagnosis profile below is hers. She is a mother of three (youngest is age 2) and was diagnosed with Stage IV out of the gate this summer. She did some radiation and chemo, and is continuing on with Herceptin and Perjeta (though the side effects of the Perjeta for her have been difficult). She met with her doctor last Thursday and they believe she may be NED. There were two "hot spots" on her scan, but the doc couldn't say that they were cancer and so she will have a follow up scan in 60 days to check - and hopefully be able to confirm that she is in fact NED. Assuming she is NED, she is wondering what now? Do women stay NED for long periods of time? What have your experiences been after first becoming NED. Thank you all for your willingness to share your stories in these spaces. She and I have received such tremendous strength from reading your words.
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Hi DizzyDee -
I'm sorry to hear about your sisters' recent diagnosis. Her story sounds very similar to mine. I also have three very young kids and am 36 years old. I did 4 months of chemo and h and p and achieved NED. I have now been NED for about 18 months. I think what she will experience is a lot of doctor appointments, waiting and hoping and hopefully continued NED reports. I will say it gets easier as you go and get into a normal routine. She may start off with scans every 3 months and then the onc should space them out longer and longer as she goes. I'm really hoping she'll be able to tolerate the perjeta better as she gets further away from chemo. For me, H&P is very tolerable and the worst part is the itchy skin. So many people on H&P are doing so well and her2 cancer treatments are improving every day. There are so many stories of long term NED so stay pos positive and try to enjoy those kiddos!
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Hi everybody, I have not been posting for a few months as I have not known if I was still NED or not - my CA15-3 kept rising in small increments every month. t the point where my onc was beginning to get worried. This week I went into hospital for two days and was given a thorough laparoscopy of my abdomen and a special sort of liver MRI scan - neither test showed up anything! So I am still NED. Doing the happy dance.
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boo! Yay! Café-Yay too! Sorry, I don't come on much but work has been crazy!
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Thank you, Josalive! Congratulations on maintaining NED! Sending love and prayers of healing to you.
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Yay, Boo! Sorry you had to be in the hospital, but worth getting that news. Dizzydee, I'm happy to say I'm seeing more people live longer with NED here on the boards than when I first joined.
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Hi there from Cleveland. I just wanted to take a moment to thank you all for sharing your stories. My Mom was recently diagnosed with Stage IV breast cancer, HER 2 - positive, mets to spine. It was a heart breaking blow, but seeing the strength, love, and hope in each of your stories has been a beacon of light in an other wise dark time. My Mom is currently NED (as of today) and I hope to get her on this forum soon. May god bless all of you, and know that I am rooting for each and every one of you. Keep fighting the good fight ladies
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Hi everyone, I have been showing ned for three and a half years. Having triple negative, I have been unexpectedly blessed.
I hope to see the day that everyone gets to dance with Ned.
hugs Rose
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Boo
YAY Every day NED is a good day
Nel
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YES!!! I love this thread and pray that we can add many, many more to our numbers!! Thanks for starting this!
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Great, great news, RosePenny! Happy dancing with you, too, Boo!
DizzyDee, I'm sorry to hear of your sister's diagnosis, but glad she is on her way to NED. I had a PET/CT that declared me NED almost a year after dx in May 2016. I did TCHP for 6 rounds, radiation to bone, surgery then radiation to chest. Two small spots on my spine and pelvis were radiated and are inactive. I stopped Perjeta after 4 months, but continued on Herceptin for a year, then stopped it per MO recommendation. I'm in maintenance mode now with daily AI and MO follow up appts., blood draws and Zometa infusions every 3 months. Without any symptoms, my MO is doing scans every 6 mos. and in November I had a chest/abdomen/pelvic CT scan and a bone scan that showed I'm still NED. I look forward to scans because they let me know all is well, but at the same time, I worry, too. It's a roller coaster ride of ups and downs, but like Josalive said, it does get easier and eventually your sister will settle back into a more normal routine. In the meantime, she must enjoy those kids and live for the day because tomorrow is not promised to anyone.
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Ericka, yes do encourage your mom to join us here. We all need to lift each other up with the hope that many more will follow and we'll continue here for many, many years to come.
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Hello everyone, sadly just 21 months after starting this thread, I have at last found out why my tumor markers have been chugging up, and alas am no longer NED. My sneaky ILC had thrown out a tiny speck into my omentum, taken out on laparoscopy and, to the astonishment of my onc, the 2mm speck was Her2+++. Given that all previous biopsies for the past six years have been ER+ 100%, this is a bit of a turn up for the books. Also explains why Faslodex was not working - I was being treated for dormant ER+ disease. Apparently it is very rare but not unknown for ILC to be both ER+ and Her2+. Who knew.
So now I am to have Herceptin, Perjeta and some rounds of Taxotere. I need a port, my arm veins are shot to pieces from previous treatments. Meh. I'm going to try cold cap this time, I have lost my hair twice already to this disease and I just don't want to go through that again on top of everything else. My lovely onc says that I really am kind of NED because the speck was removed totally, but I need the chemo to make sure there are no other live HER2 cells floating about getting up to mischief.
So, if all goes well I will once again be NED some time around the end of May, when chemo ends. I will then continue on Herceptin and Perjeta and be put back on a hormonal as well. So full house as far as treatment goes. Just hope the combination works long term. I had not idea that I had dormant Her2 as well as ER+, so this has all been a bit of a shock and quite a lot to take on board. Stupid cancer.
I have a favour to ask - I have tried to welcome folk who join the thread, although there have been times when I took a break from the boards and so was not always around to say hi. It has been wonderful to see the NED crew grow and share and support each other. I was wondering if one or two of you regular contributors out there would like to step up and take on making new friends who join the NED crew welcome? Thank you so much. I tend not to post on other threads any more, just this one. So if it's all right by you I'll keep in touch, and look forward to being an officially NED crew girl again soon. I wish you all well, send much love and look forward to hearing from you all.
Lots of love, Boo
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Boo, 3 years ago I went through 6 rounds of Taxotere with H&P and am NED. The drugs are pretty effective for HER2+. I was originally weakly ER+ and had a Mx and no treatment. 18 months later I was HER2+ with liver mets but with no ER+. Darned confusing.
Taxotere was awful, especially the last 2 rounds. I still have neuropothy. I did use Penguin cold caps though and I kept all my hair. They are uncomfortable but often work. I stuck to the protocol exactly thanks to my science guy.
I know you're not asking for advice so don't read if you don't want unsolicited advice--though I'm not going to suggest coffee enemas or cannabis ;-0 I was wondering, given your worry about your past treatments and the hit you've taken from them would it be advisable to try H&P and see if that drives your tumor markers down? Since they took out the spot. I think there are people who forego the Taxotere and if I'd known that was an option I would have tried H&P only first and if that didn't seem to shrink the tumors added in Taxotere. Just a QoL thought.
Love to you too, best wishes for treatment.
Michele
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Thanks for your thoughts Michele, I so appreciate it. I live in the UK, and the protocol here is that Perjeta can only be prescribed when the patient has a course of chemo to kick the treatment of H&P off - and the chemo used in the trial was taxotere. This will be the second full course of Taxotere for me, and the third time of having it as I had FEC-T as my first round chemo. My lovely onc said that I can stop the taxotere before six cycles are up if I want to. I already have neuropathy and he is worried about it getting worse (so am I). Interestingly, he said that herceptin gets off to a better start if dished out with a chemo at the beginning. So fingers crossed. I do hope that all continues well with you. Love to you too.
Boo xx
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Yes. Fingers crossed. My Onc also followed the Cleopatra protocol, I get it. And it worked for me and many others. So, your Onc will check tumor markers and get you off the Nasty Taxty ASAP. Stay with us Boo :-)
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Hi Boo. Sorry to hear that your back in it; stupid cancer for sure! It's sneaky how it changes. I did TCHP, and I think it was about round 4 when I started to feel neuropathy from the Taxotere. I still have it, but I've been doing acupuncture and it seems to be helping, at least my right foot and hand are much better. I tolerated the H&P very well except for a continual nasal drip, which was really annoying, plus some mild diarrhea. I have a port as well, and love it. I'm so happy my surgeon recommended it. Good luck to you and we'll see you back here in May. In the meantime, I'd be happy to check in here more often and welcome the newbies. Big hugs.
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Thank you Miche, I had no idea that this treatment combination is called the Cleopatra Protocol, I have just looked it up, it sounds really encouraging. So thank you for boosting my moral.
Barbara, thank you for offering to welcome new members to this thread, I appreciate it. I get so much encouragement from the support that we all show for each other.
Love Boo xx
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Sorry for your news, Boo. Wishing you the best outcome from your new treatment. Please keep us posted.
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