Stage IV NED crew : lets support each other
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Hi
Encouraging news certainly helps the fragile mental state. Hope others will chime in on a regular basis.
I am one year on from dx and still having HP.
Liz
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My encouraging news is that the scans I had last week continue to show stability. I was dx in January 2011, meaning 7+ years of living, learning, leaning in to the lessons the disease has brought my way. Living with it, not dying from it.
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Still NED.....that makes almost eight years, the last 16 months without any treatment and life is good.
Love n hugs to all. Chrissy
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DivineMrsM-Arimidex is the only treatment since chemo, lumpectomy and radiation? Wow, that's amazing. My last CT scan showed healing mets (bone only) but my tumor markers went up from 139 to 176. Not sure what to think but I'm happy with healing and stable.
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Lauriesh, wow on 3 yrs without treatment, Chrissy, 16 months is also great. grifff and MrsM, stable is very good news.
I am 10 years NED but still on treatment. I am on Tamoxifen after switching from AIs due to side effects.
Jackboo, I think you have every reason to be hopeful.
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All,
I have been NEAD for about five years and in continual treatment with Faslodex. My oncologist told me on my last visit that if I had been on chemo he would have taken me off it years ago because of toxicity. He wants me to stay on Faslodex, saying "Why rock the boat?" I agree, but as long as I'm in treatment, it's difficult to forget that I have Stage IV cancer.
Make no mistake--I am grateful and feel fortunate. I also feel fat, lumpy and tired, with gnarly joints and a thickening torso--certainly not all caused by estrogen deprivation, but not helped by it either.
Not complaining, just venting to friends here,
Tina
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grriff...yes, arimidex only since chemo/rads/surgery in 2011. Onc said, “lots of new meds have arrived on the scene since you were diagnosed." meaning she thinks I should have a good shot at living with this a long time. Of course, I knew that already about new treatments. Like Tina's onc, mine is not fixing what ain't broke, so I continue on arimidex.
It is wonderful to learn of all NED results here. Chrissy, what is the reasoning behind no meds for the last 16 months, if I may ask?
Tina2, I also have those mixed feelings of gratefulness along with the challenges of estrogene deprivation, the aches and slower pace; happy to still be kickin' it, yet dealing with the reality of it, too.
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Divine it started as a one month break from Femara due to side effects. I had been showing NED for so long that I talked my onc into allowing me to continue without meds. There was, of course, a proviso that if I became unwell or experienced any new pain I was to return to taking meds once more. I see himvevery six months for a checkup and so far so good.......no new symptoms and no new pains, in fact I'm feeling the best I have felt for years.
My onc knows that my decision was a well informed one so is happy that I'm doing as well as I am.
Nice to see you are still doing well.
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Oh How Wonderful - You all give me hope. I have been NEAD since July 2017, so not that long. But I am hopeful. Scans in April. I'm already having scanxiety....anxiety. It just preys on my mind. I try to distract myself with activities, but I wake up in the middle of the night and Boom!!! there it is!
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Hi
Great posts Tina2 and Chrissy- important to share the reality of life on treatments.
Kris- we are pretty similar in terms of newbies to NEAD. I had a scan in early Nov that showed no active uptake.
Just had a scan last Fri and now have a 2 week wait for results.
Liz
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Liz...two weeks to wait for results....ouch, I don't think I could take that wait. Good luck and let us know the results.
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Thanks, I’m a nervous wreck. 2 weeks is about average for the NHS.
X
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Hi.I am still NEAD. Any long term NEAD liver metsers out there?
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Three year almost NED, next scans April 9 and if ok it will move to every 6 months! Over mets only with SBRT last April
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Hi Bstein
That is great news! I am hoping to move to 6 monthly scans if my last CT is favourable. Still waiting on the results and trying to hold it together!
Good luck
Li
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Hey Ladies. So thankful to have found this thread. Looks like where I belong at the moment. So....I'm hoping you ladies can give me some insight. I've been Stage IV TNBC for four years. Mets to Liver, Chest Wall, Sternum, C3 vertebrae and a few other small spots. I've been NED for almost a year now. On no treatment since there isn't a maintenance for TNBC. I did well through chemos and rads..... My issues now are Neuropathy of course (comes and goes) and pain. I tend to break ribs easily now from all the treatment. Recovering from two fractures in lower left cage now. I have continued on pain meds because we've tried other things like Lyrica, Gabapentin, etc.... Do you all have some insight as to when some of this will improve. I live a full life, work some, travel, pretty much normal. However, I REALLY want to feel better physically. What have your time lines been? When did you all notice you were a "little" more like you "used to be"??? Or is this it??? Obviously some damage to bone and nerves. Do any of you see a bone dr? Neurologist for the neuropathy? Just looking to others who are THANKFULLY NED!!! It's a GREAT place but HARD to accept that once you get here........ well, it's different than what I had hoped. I've read alot of your comments and see you all deal with similar issues. I see that having cancer changes your life and sometimes that change is permanent. Don't misunderstand....I will take what I got and be happy. But if you have some time to chime in I would GREATLY appreciate it.
God Bless, Tara
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Tara, my sister (her profile is listed below) has experienced the most pain relief from acupuncture. She wouldn't say she's back to herself, but definitely a little more like she used to be. Good luck and congrats on maintaining NED!
Dianne
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Tara, congratulations on your NEAD status! I have neuropathy in my feet and hands, although I think the arthritis in my hands is actually worse. I haven't seen a neurologist, but did have acupuncture for about 9 mos. and it really did help my feet. Resolved 90% of it in my right foot and about 70% in my left. Then plateaued, so I stopped, but the relief has remained. You may actually be "lucky" to not be taking maintenance; AIs anyway. They are aging me much faster than I should be and make me feel worse than all the surgery, chemo and radiation combined! I started to feel more like myself once I recovered from initial treatment and before these drugs (on my third one now), but this pain continues. Having said that, I am grateful to be NEAD and still here to enjoy life, albeit, a slower one, so I will continue to take the meds as long as I can!
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Tara, welcome to Club Ned!! I would say I felt my strength returning after chemo maybe 2 years later. Still had aches and pains and fatigue after that but more manageable. If you are not on AIs you may feel better much sooner. Massage and acupuncture can be very helpful to some people. Exercise is a multipurpose drug in the right dosage and intensity. As for a bone doctor, yes, I think it's important with your history to get a handle on bone degeneration issues. Your MO could also prescribe bone strengtheners like Zometa or Xgeva for fracture and/or bone mets prevention.
woohoo, bstein! sandibeach, there are long-term liver NEDsters out there. Hope they check in...
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Thank you ladies for you responses.
Heidihill....ONC says to me the amt of times spent in treatment is pretty much the amt of time to feel "normal" again. Seems to be right. The further out I go, the better. I think knowing warmer weather and longer days with sunshine gives me hope. The winters and cold rainy days have been tough! I've actually been so blessed in this journey. Lived my life as close to normal as possible. I'm just the type that likes to be up and doing. I remember my body like it was before and want it back. NO CHANCE!
Bliss88 and DizzyDee... I've been looking into acupuncture. For now the neuropathy is soooo much better! But I like anything that relaxes my body and mind. I'm looking forward to exercises again. Probably stick to walking since just doing yoga broke my ribs. Live and learn.
You ladies are going through the same as I have and at the moment in more of a battle (due to being on some kind of treatment)..... so you will be in my prayers.
Thankful I posted. Just helps..... You know??!! Yes. You all do!
Tara
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Hi all,
My latest scan shows that there is still no evidence of active disease. I am one year out from a recurrence in the chest. The original tumour being 3.5cm and was compressing my internal jugular vein. That vein now has blood running through it once more. I thought it would never recover.
The oncologist classses this as an exceptional response to THP and I am so very grateful for this news.
Liz x
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Yay Liz, that is wonderful news!! Long may it last.
Love n hugs. Chrissy
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Fantastic news! Way to respond, Liz!!
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Great news Liz - Thank you for updating us. I have been checking every day to see if you had posted. I'm still amazed at your mental fortitude in waiting two weeks for scan results. I would have been a puddle. Way to go THP! I have a PET/CT in two weeks, and we will find out if I'm still NEAD then! Keep your fingers crossed!
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celebrating with youLiz!!!!
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Thanks everyone for such lovely messages of support.
Kris, I’ll be checking every day to see how you have got on too
L x
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Liz, I’m doing a happy dance for you! I’m so, so glad to hear your wonderful news!
Love reading all the updates from those of you several years NED. So reassuring
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Thanks livebig and mommyerin,
How are you both doing?
Liz x
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please can I join you ladies? I’ve been reading your posts for a few weeks but was due scans etc and I was afraid to tempt fate. I’m 2 years post MBC diagnosis and I was in remission when I was diagnosed and I have remained NEAD since then.
I was given EC chemo to lower my tumour burden and I’m on Tamoxifen. My tumour markers have never been elevated so we have to go by ct scan as bone scan and PET scans are normal.
I am very lucky as my oncologist believes that my body had dealt with the bone mets years before they werediagnosed foliwingan incidental x-ray. This may mean that there are many, many ladies out there who may have mets but that these mets are naturally kept in check for many many years. I do hope that this is true.
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Wow, what a story, Vevs! I absolutely believe in spontaneous remissions because the body has incredible self-healing powers as well as pathways we don't really understand. I'm sure there are men and women out there who may have had mets and not even known about it and then died of something else. Probably not common but under the right circumstances possible. If only we knew what might cause such a happy turn of events. In any case I'm glad you find yourself in this lucky group.
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