Stage IV NED crew : lets support each other
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Great report Beautful Sunset, I love this thread. It gives me hope x
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BeautifulSunset really glad that your scans were good........as the old saying goes, you are so close you can taste it. 😀 Hope it's not too long before you join us.
Love n hugs. Chrissy
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Great news A beautiful sunset
X
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Well, I'm sad to say that my long dance with NED has come to an end it seems. My CT scan on Friday has picked up a destructive lesion on my 3rd rib and I'm waiting on the results of a confirmation Nuclear Bone scan. These results will be available to me on Monday.
It has been almost eight years with NED and the last eighteen months with no meds at all.......to me and mine this was a blessing no one expected.
To all of you and new girls who join this thread, miracles do happen, never give up and never give in. Hopefully I will be back shortly.😀
Love n hugs all. Chrissy
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Hi Chrissy
I think you were thefirst person who reached out to me on this site. I am sorry to hear this news but I know for sure that you will put your game face on and be back to NEAD very soon.
I am sending you a huge hug.
Liz x
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Hugs Chrissy and look forward to having you back very soon xx
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hugs Chrisssy! What an amazing run you’ve had! It is absolutely inspiring to me and I am sure so many others to know you’ve gone so long NED and medication-free. Sounds like a dream!!
I hope that your bone scan comes up with zero/minimal results. I have had extensive bone mets and what is amazing is that with Ibrance and letrazole the bone lesions have healed for now.
Sending love and support!
Brenda
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Chrissy,
Hope to see you soon! After 8 years NED and then just one bone lesion, it seems as though you are looking at many many many more years to come. For some, this stupid disease is chronic. Yours seems to be behaving as such with oligoprogression. Hugs!!
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Thanks girls, I really love your support.
I've finally got all the results back of my scans and it's definitely the end of my dance with NED.
Hoping for a short run out in the cold before coming back to dance once more with NED.
Love, hugs n hope for all. Chrissy
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Oh dear Chrissy, such a blow. i do hope that you are given Denusomab - the one lesion found in a pelvis bone on a scan last December (2017) was sclerotic by March and NEAD by August for me. I hope it does the same for you. Hugs. Boo xx
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Thanks Boo, doc was talking a Bisphosphonate but I refused it as it gave me so much pain last time I tried it. I'm happy just going on with the high dose Vit D and magnesium.
Love n hugs right back at you,
Chrissy
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Chrissy,
I have never come across anyone except you that suffered from pain on Denosumab. I had begun to think that it was psychological.
I find it awful and also find that it has a cumulative effect so it seems to get worse with every dose. I have never experienced joint pain like this.
Betweenthe chemo, Tamoxifen and Denosumab my joints are shot, there are nights and mornings when I want to cry. The actual bone mets have never bothered me....ironically!!
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I like that word oligoprogression. Chrissy, I'm glad this applies to you if any of us have to have progression. You had a relatively long run without meds, which hopefully has served to resensitize cells to the reintroduction of meds. Hugs to you!
Sunset, great news and hang in there. The best (news) is yet to come. Boo, WOOHOOO! Love that you are back with us.
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Hi girls, just a pop in to let you know bone scan results......not nearly as good as the CT. Not just third rib on the right but 10th rib on the left as well as scapular, collar bone, sacral ala and pubic bone......a few more than ogliometastatic unfortunately. Here's hoping my system is sensitized enough that the Femara works as well as it did last time and scans in three months show a marked improvement.
Love n hugs all. Chrissy
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cnrissyb, I hope the Femara will do its job quickly and thoroughly. Is Femara the only med you will take or is it in combination with something else?
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Hi Muddling through, Femara is the only drug I will take. Combinations will be kept for later should they be needed.
Love n hugs. Chrissy
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Hi Chrissy
Thinking of you. Keep posting how you are doing.
Huge hugs
Liz x
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Hi Chrissy, I think you had a sneaking suspicion about your bone mets, but good to know what you are up against so you can get it under control. I hope the Femara will kick some butt, and every time I get a hot flush I will be thinking of you
Hugs,
Jackie
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Chrissy
Gentle hugs and hope that the Femara kicks this
Nel
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Chrissy, I'm sorry that it's not oligo anymore, but hoping for a mega response to Femara again.
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Yes Chrissy, hope femara has you back dancing with NED very soon!!
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Hi Chrissy. Best wishes that the Femara kicks the progression and you're back to NED shortly. Please keep us posted.
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I am hoping to join the club shortly... stage iv denovo with single met to t5. Did 9 rounds of ac-t (taxol turned to abraxane after a maslice reaction) had surgery clear margins. Restating bone scan and mri showed significant response to Chemo on met and there is evidence of healing at t5. Met was lyic. I am now on round 13 of 25 of radiation and will be having cyber knife treatment to the lone met. I am also on ibrance and femera.
Let's see how this goes NED dance to come!!!
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Chrissy B - I'm so sorry to hear about your progression.... You seem to respond so well to AIs, I'm sure Femara will knock this back for you. You were my first support on this site and I am forever grateful.
Sparkles - sounds like you are very close to NED!
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All,
Good news!
Results of last week's CT and bone scans: No active mets in lungs. No mets in other organs. Nothing in bones but arthritis.
At this time in 2011 I thought my life might end. But then I got another year, and a year after that and many more!
Happy to be trucking along with you,
Tina
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That's great, Tina2! Hooray!
(I'm not NED but I follow here for inspiration.)
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Tina, way to go! Sparkles, looks like they want to send that lone met to oblivion.
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Tina,
Wonderful news. So pleased for you.
Liz x
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hi Tina wonder feeling its great to share the news ..its the same for me
All the best
Bright in hope
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Hi Ladies, I've read alot of your posts and might have chimed in a time or two but not on the site much.....use the computer at work so not much on personal time. However, I have been NED for 18 months now, after 3 years of treatment. I am not on any meds because I am Triple Negative, so no maintenance. I am sure many of you work. I have been on disability since 6 months into treatment and now I have the opportunity to return. So, I am curious if any of you have been on disability (SSI and/or LTD) and returned to work?? I have a grace period with each and dr will allow. My employer (i've worked a few hrs a week the entire time) will allow me to return 30 to 32 hrs with benefits, vacation and sick days. I am a little nervous and want to make the right choice. I just feel it could be a good time to try and who knows could be the best thing for me.
Just wanted to hear any experiences.... working? returned? returned and it was good choice? returned then went back to disability? ANY input will be greatly appreciated!!!!
Thanks in advance and may NED remain!!!
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