Stage IV NED crew : lets support each other
Well, I'm now a stage four NED girl, and would like to connect with other stage four people who are also in remission. Could this be a thread for supporting us all through the complex world of stage four remission, check ups and routine scans, anxiety, side effects, ongoing treatment, expectations from family and co-workers and friends, and the constant edge that uncertainty brings with it every day. I know we are lucky to have got to NED, so this forum will celebrate our individual positions whilst respecting and supporting all our other BCO stage IV sisters on their own treatment journeys, hoping that all can come and join the NED crew just as soon as they can.
Looking forward to meeting you all.
Boo
Comments
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Well, I'll make a start. I have been NED since a liver resection in August 2014. I am thankful for this robust treatment. I now take letrazole, try and eat a healthy anti cancer diet (well, most of the time - ish) and am trying to exercise a bit more - not something I especially enjoy. I've started to learn Tai Chi as a way to try and help me with my ongoing anxiety about my stage IV status, and it does seem to help a bit. I'm always fatigued, I think that might be from the tetrazole, but Ive got to go back to work come September and I am not looking forward to that at all.
Scans every three months are a blessing and a curse - stress leading up to the scan and waiting for results then relief at a clear result and then anxiety builds waiting for the next scan... I was always a high risk for mets and even now am NED am told I am still a high risk for more mets.
I would love to know how NED girls manage to seize the day. I want to, but i feel stuck in the world of uncertainty. Your thoughts / advice would be wonderful. Thank you, Boo.
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Bco: I am happy and very humble to be able to join you at present in the world of NED. My PET scan in March showed no activity after finishing Taxotere at the end of 2014 and continuing on with just Herceptin, Perjeta, and Zometa for bones I had many, many liver lesions as well as rib metastases. I am ER-PR-HER2+ and my receptor status has not changed since originally diagnosed in 2011 with Stage III. I feel very fortunate that I do not suffer any noteworthy side effects to speak of. My lifestyle involves walking every day (2 miles in morning, 2 miles in evening), diet changes that involve many more vegetables and fruits, less dairy, less meat (but more organic meat when eaten), filtered water, visualization therapy, and positive thinking whenever possible. The only supplementation or prescriptions that I take daily are 4000 IU of Vitamin D3, 600 mg Calcium, 1300 mg Tumeric/curcumin twice daily, and Levothyroxine for hypothyroidism. I work from home as an Ebay seller so I don't have to go into the "office" and can work from the comfort of my own home. I use my own intuition as an indicator of how well I'm doing so I don't stress too much at present regarding scans. My tumor markers are in the normal range at present and know that they are used as general rule of thumb but should not always be considered the "bible" in determining cancer status every month, only if markers should rise continually. My husband and I are planning some kind of vacation possibly this summer just because we both just want to get away; destination yet to be determined. We haven't been on one in several years and think it would be a stress reliever. Life goes on and so am I! Best wishes to all out there, NED or otherwise! Ann
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I am also Stage IV NED as of a craniotomy in the spring of 2014. I am back to work full time, and have two young daughters and a husband who helps tremendously. I'm just on Herceptin every 3 weeks (was originally triple positive, the metastatic recurrence was just Her 2+). Colleagues constantly ask me how I'm doing/feeling...it is so sweet. I think they are surprised that I'm back to myself but I really feel great! No side effects from any medication, few residual effects from surgery, etc. I keep saying that I'm the luckiest/unluckiest person in the world.
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Hello Teakie and Leftright, thank you for sharing your stories - wow, you have both had so much treatment, and I find it wonderful to hear that multiple liver mets can be done away with and that a craniotomy can be a treatment for BC - I really had no idea.
I like the sound of visualisation, think that I will give that a go. I live in the UK and have been a few times to the Penny Bhron Cancer Centre, a charity which focuses on supporting cancer patients through their journey using a whole person approach. Its really informative. Lots of information on nutrition and a healthy anti cancer diet and exercise to reduce stress which is a main contributor to creating an environment in our bodies where cancer cells can become active. Given that post surgery pathology shows that I do have plenty of inactive isolated tutor cells hanging around in my system, I am keen on following any anti-stress advice going!
Best wishes, Boo
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I have been Ned for over 4 years after having 2 liver mets.
I get just 5-6 treatments of herceptin a year because of increasing side effects.
My biggest struggle now is with anxiety. It's funny as I didn't struggle with it as much when I was first diagnosed, but it's been increasing over the last few years.
I now see a psychologist and I equate it with a game of Russian roulette .
Every time I have a clear scan, there is tremendous relief but then there is increasing anxiety that the next scan is going to be " the bad one"
Laurie0 -
Laurie: I can certainly understand your anxiety over scans, but i am so happy for you that you have done so well over the years! Just keep a positive attitude if you can about doing well for the next several years. I know you can do it!
Boo123: I love my oncologist dearly as a professional and a person, but in my area of southern Illinois, none of the oncologists I have heard about, work as integrative--treating the whole body, not just trying to blow up the cancer. I've had to do all the research on integrative oncology on my own, as I'm sure many of us have. I think part of the problem is that their case load is becoming increasingly heavier with so many new cancer cases being diagnosed that they don't or won't commit to further education on treating our whole body and mind. I truly believe that integrative oncology is the "big thing" now with lots of great research behind it. Ann
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Hi, really enjoyed reading your girls posts, so encouraging and full of hope! So I will add my story to the list: Original DX was August 2010 as a stage II, come find out I was actually Stage IV from the start, my CT and bone scan was misread. I think the docs were being optimistic and wishing it wasn't true. Fast forward to today, my recent and first PET show no hypermetabolic activity!!!! This has been the best scan to date! I can't claim NED because the lesions bone still show on scans. But I am so grateful that the PET showed no activity, it is a relief.
Lauriesh- I get what you are saying about increased anxiety, as, each year goes by I feel like my time is getting shorter to the beginning of the end. I remind myself what my MO says and he says that since I have responded so well to the treatment, that I will continue to respond well to the "next" treatment. (sigh) It never ends does it?
Wishing you all a day of happiness!
Trish
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I would describe myself as NED-ish. My scans are clear, but I do have a skin met on my bad breast. It doesn't seem to be active, but still… I'm past the five year mark now, after being diagnosed with spine/sternum/liver mets in 2010. I was in very bad shape then, and I know I'm extremely lucky to be here.
Laurie, I struggle with the same anxiety and it seems to be getting worse. I'm considering getting psychological help too. Would you say that your psychologist has made a great difference in your outlook? I don't know how someone could possibly understand our feelings unless they've been through it themselves! It's truly a bizarre way to live.
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All, it is so encouraging. to me, to hear of stories of NED running for many years...it does help me so much to hear your experiences. It also helps to know I am not the only one who is anxious. I also feel so guilty that I am in this lucky position, and feel bad and selfish about feeling anxious, while knowing all the time that there are many other folk who have not yet got to stable or NED. This illness is really messing with my head. I have had some counselling, maybe it is time to go and seek some advice on coping strategies. I feel under pressure to get out and grasp life now, in case it comes back all the sooner. I just don't quite know how to navigate around the anxiety and allow myself to get on with living. I totally get Laurie's russian roulette scan metaphor and TMac and Steelrose' anxiety issues. Sigh.
Boo
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Never feel guilty that you are NED. Never. It is a wasted emotion. Also, let yourself off the hook about feeling pressured that you should be "grabbing life". Try to take it a day at a time.
I'm into the fifth year dealing with stage iv bc and being stable (onc doesn't use the Ned term). I've gone thru many phases. Yes, I did travel a bit excessively the second year, after that first year of the big treatments. Then I started to pace myself more. These days, I love the luxury of having time to do things and not rush them. Spend a morning in the flower beds. Spend an afternoon reading a book. Take a weekend to visit relatives and not feel like I should be getting housework done instead. I still like the big moments like a nice vacation or seeing a concert. But I am also thrilled to be experiencing yet another glorious springtime, which is my favorite season. I love a delicious meal or spending the afternoon shopping in home decor stores. Good books and movies. Time spent with grandchildren.
I appreciated my life before bc, so I didn't need it as any kind of wakeup call. It just seems like now, the focus of that appreciation is even more clear
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TheDivineMrsM: Absolutely love your take on life, and I believe it follows my own philosophy as well. Yes, I have my "dark" days and apprehensive times, but I'm still here. I'm going to fight for and enjoy every day that God is giving me on this Earth. I would hope that those of us who are able to enjoy the NED status for any length of time at all can be an inspiration for those who hope to become NED. I know personally that reading about so many of you who have maintained your life by hook or crook and/or who have maintained stable or NED have been a great inspiration for me. Life is terminal from the day you are born; that's a given. What we do with it while we're here is up to us. Ann
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May 5 will be my 5-year anniversary of being married to NED. I can't believe it. I was dx Stage IV in October, 2009. I had scans between having a BMX and starting RADS. I got the report 5/5/10 that the spot on liver appeared as scar tissue and "no evidence of metastatic disease can be seen". My onc says I've had a complete pathological response to chemo.So I live my life. I work full time. I went back to school FT at UNCG to get my Bachelor's degree. I go to church every week and love every minute of my day. I bought a house, took my first airline trip, and I'm going on vacation to NYC soon.
I hope some of you can understand that cancer is truly a blessing to me. It's opened doors to me that I never thought possible. I've done things I never would have pre-cancer. It's also shown me the beauty in the world that only one can see when faced with mortality. I've become a better mother, wife, daughter, and child of God because of my illness. Carpe Diem is my new mantra
Peace and love to all, Linda
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Welcome Cafelover, Teak and the Divine Mrs M. Thank you for your insights into living with NED. You are all inspirational to me, and I feel honoured to receive your advice and wisdom. I am working hard at settling into my new normal, I think at the moment that things have all crowded up on me a bit. However I have just been to my Tai Chi class and have returned home feeling peaceful and relaxed - Tai Chi is certainly helping me to overcome my anxiety. Baby steps, but I am learning to move into the new normal. Thank you everyone, thank you. Boo.
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I will join the club…..and hopefully be a long standing member.
My story briefly:
March 2014 diagnosed with bi-lateral breast cancer. One = ER/PR+ and the other is ER+/PR-. Both were HER-. Originally thought to be a stage 3 but a PET
showed a very, very small spot in the sacral region. They were unable to biopsy due to location. Two of three radiologists thought it was not a met. I did 12 x
Taxol and 4 x AC. They then did another PET. Unfortunately the spot in the sacral had a complete response to chemo so they deemed me stage 4. They decided to still pursue a double mx. I had the operation in September 2014. My lymph nodes showed as completely clean. I then went onto 28 rounds of radiation which I finished in November. I started Aromasin and monthly Zometa in September. I had another PET in late March which showed NED-nada! They say they can’t even see
where the spot was in my sacral.That being said-I am still terrified at times. I saw this thread yesterday and have been nervous to post on it because I don’t want to jinx myself. I am so grateful to have most of my life back after having a lot of treatment for the past year. The treatments, operation, etc went very well and I only missed chemo appointment times from work. Never was sick, etc. Only missed seven days of work for my mx too. I am now fighting with my hair, but no matter how crazy it is, I am just glad to have some!
Physically I am back to biking 20+ miles, running a couple here and there, etc. I also am around the corner from getting my permanent implants too!On the good – I can absolutely relate to cafelover’s take on in some ways it’s been a blessing (assuming I continue to do well and stay NED). I am more focused on my family, friends, work, hobbies, etc – I don’t worry about all of the stupid little things I used to.
On the bad – the anxiety that this could be my only NED period is terrifying. I also get a little upset about the number of appointments I now have to have (even though
my work place has been WONDERFUL), I get sad that I may not be around to retire with my husband, etc. I hope I don’t appear as being whiny to those who are dealing with much worse situations than I am.
I think this thread will be a great resource and source of hope! Thank you for starting it.0 -
cafelovr, beautiful post; screech, you are not whiny at all, no need to apologize. Boo, I always wanted to try Tai Chi but no one around here seems to have a class...maybe I could find something on YouTube. Teakie, isn't it wonderful we are all here to support each other? That in itself,is a blessing
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Dear Divine Mrs M, do seek out a Tai Chi class if you can, it is a wonderful mix of gentle movements, meditation and memory focus - each week I learn a new move, and slowly am working my way through the basic short form set of movements. It is elegant and graceful (well, my teacher is - me, not so much!) and very fulfilling. I leave each class full of happiness, and practice at home every day to build my confidence and try to become as elegant as my teacher. I clearly have a long way to go, but it is bringing more benefits into my life than I realised.
Thank you also for your other supportive comments on this thread. I always enjoy reading your posts on other threads. In fact, you are one of my "favourites"! You are clearly a very sensible, compassionate and wise woman. Boo :-)
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July 4th will be 4 years for me with no progression since I had rads to my bone met. My life, knock wood, is pretty normal and a lot of wonderful things have happened in those 4 years. I am realistic, however, and don't expect the ride to last forever, but I won't put my foot in the grave before I have to. Cheers
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I had my monthly zometa infusion and a quick exam with my MO this morning. I have such a built up feeling of anxiousness now even though I was told I was doing fantastic and that my tumor markers were very low. I think I panicked because he has never mentioned that before. Does anyone else get this feeling even when you're not given any bad news?0 -
Hi Screech, low tumour markers is a good thing! Hope they stay that way! I think we are always so braced for bad news that it is hard to take it in properly at first when the news is good!
Boo
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I'm going to cautiously post on this thread. I was told I was stable with very low TM's (11.8) and a bone scan that does not show any progression. My onco does not use the term NED, only stable. GG
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GG,you are very welcome - with TMs at 11.8 you are in a strong position, IMHO. Those are the lowest TMs I have ever heard of! Long may they run at that level! Boo.
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I had to knock on wood before starting this post, but I am 2 years NED this week. I originally had 7-10 tumors in my liver, but BMX, A/C, and a hysterectomy followed by Arimidex put me NED. My MO went with an aggressive approach, and so far, I 've been thankful for those results. My tumor markers are coming up tomorrow, though; so, we'll see if I get to keep claiming this status. I have found so much encouragement in seeing people go for long periods NED or even stable.
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Wow nbnotes, that is a fantastic result! Well done for kicking those liver mets to the curb! Good luck tomorrow, I hope that your tumour markers remain nice and low. Boo.
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yay! More "members" ! Hopefully as time goes on we defy statistics and gain more members. I'll have to ask what my TM number was. He just said they were really low and that it was good. This number was never mentioned before and when I asked one time previously I was told that they weren't absolutely correct all of the time. I am thinking of trying a yoga class to help with anxiety. Has anyone enjoyed it? Currently I run about six miles a week and now that spring is here I will add about 40 miles of FLAT bike riding. I think the yoga would round things out well. I also read a lot to escape!
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I was diagnosed stage 2 on 2/22/2008. I had a clean bone scan and a little nodule on a ct scan. After my lumpectomy they wanted to check out that little nodule before I started chemo but we're pretty sure it was focal scarring ... Which indeed it was. However my pet scan showed 4 tumos on my liver, cancer in most of my right ribs and left hip and in my chest nodes. After three cycles of chemo, a pet scan showed NED. I finished chemo and continued with Herceptin ever since and have remained NED now for nearly seven years. I would have never believed I would be doing as well as I am and for so long.
Jen
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Gosh Jen, that is an awesome chemo result - And a fantastic run of seven years NED and counting...I hope I can achieve that too and wish you many many more! I sure want some of that if I ever have to do chemo again. Which chemo worked so well for you? So far I have done 6 cycles of FECT-T, then 6 cycles of Taxotere, and then 3 of Zelda. It was supposed to be 6 Xeloda too, but I had a severe toxic reaction which landed me in hospital isolation room for two weeks, so no more Xeloda for me. Boo.
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Hey Boo
My treatment protocol went like this:
5/2008 - 6 cycles - Taxotere, Carboplatin & Herceptin
After that was completed, they added Zometa to my Herceptin Treatments - every 3 weeks Herceptin, every 6 weeks Zometa
I had 6 weeks radiation
January 2009 - we added one year of Tykerb just for Brain protection and I started Tamoxifen
I switched at some point to Aredia vs. zometa due to joint issues and we backed it down gradually over time to every 12 weeks, 18 weeks, 24 weeks and now just annually. This year I might go to Xgeva once a year.
Decmeber 2010 - removed my ovaries
After 3 1/2 years of tamoxifen, I switched to AIs and started with Arimidex and tried this for about a year with a few breaks during the year. Switched to Aromisen and only took for a few months but both AIs spiked my blood pressure and I couldn't sleep and the joint issues were extreme. I decided no more hormonal treatment for me and have been off it for going on two years.
I see a naturalist and have since I started treatment. I also take a large regiment of supplements and herbs and have exercised religiously 3-5 days a week for the last 4 years.
Your experience with Xeloda sounds just awful. It is certainly hit and miss with that drug. When it is good, it is really good and when it is bad ... well you know...
Jen
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Jen: Are you saying that you're not on any kind of treatment plan other than Xgeva once a year? Could I ask what kind of supplements and herbs you take. I walk every day, and i think that really comes into play regarding breast cancer. Ann
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What a great thread. Thanks for starting it. Even though I never believed I could be NED, through the wonders of Herceptin and Perjeta, now I am and have been since Oct. 2013. In the spring of 2014 I developed cardio toxicity and had to stop infusions for several months. By the time my heart was strong enough to resume chemo, I had developed a brain tumor. That was zapped and soon after resuming Herceptin and Perjeta I was NED again.
The cancer has inded altered my priorities, and for the better I believe. My focus has changed and is more concentrated on people and activities that give meaning to my life. I rarely watch the news or read newspapers and the world seems to get along just fine without my stressing over current events. I think (and hope) that I am gentler, less judgmental, more tolerant and forgiving of others and of myself. I am much more aware and deeply appreciative of the small graces and blessings the make up the rythms of my daily life. And I'm taking the kids and grandkids on a Disney cruise! So there cancer
Marsha
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Marsha,
You go! Disney was the first cruise I ever did (large family group) and it got me hooked on cruising. Your grandkids will have a blast and so will you.
Caryn
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