Stage IV NED crew : lets support each other
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Gosh Heidi, thank you for posting. This is very encouraging. I am an oligo girl, having had two liver tumours nearly eliminated (but not quite) by Taxotere, and then removed by surgery last August. NED since then, and am on letrozole. After four years as a cancer patient, including six surgeries, radiotherapy, three different chemise and the different hormonal meds, a few years of NED and not having to go through treatment wiould be very welcome. This research gives me hope. Stupid cancer.
Boo
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Heidi,
Just getting to this. Thank you I had one small spot on my adrenal gland, I restarted treatment in August 2013 and it has been gone since October 2013. I continue in treatment and discuss stopping every time I see my onc. There are no studies on how long we should go with tx, stopping. I worry about long term se's with long term treatment. I am not sure I want to be here at 70 or 80, with no cancer, but debilitated due to se's . UGH.
We nee d more research on all issues related to MBC.
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True, we are the guinea pigs with some of these drugs and with what to do in general with SEs after so many years. I'm switching back to Tamoxifen, because I'm getting too stiff with Arimidex. I was on Tamoxifen for two years and it was very tolerable for me.
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I'm stage IV and NED (1 year, actually 15 months!! Yah). Just bone mets. I credit it to rads to my hips (that got 3 spots), chemo got the rest and Xgeva may be helping too. Crossing fingers and toes for another six months. I'm happy to live NED six months at a time.
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Hey everyone, these stories are all so encouraging to read. I am pleased to report in on my last scan, it came back clear, so NED continues to rule in this house. Next scan is in August. if that one is clear I will be dropped from quarterly scans to a scan every four months for a year, and then if all still well, down to two a year after that...hurrah.
I am making a determined effort to eat a more healthy diet, upping the daily amount of brightly coloured and dark green veggies and even making green juice most days. I am also trying to eliminate processed sugar as much as possible. The first few days were hard but now I am finding that I do not miss sweet things as much as I thought that I would.
Boo
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Boo: You and I are on the same path as far as healthy eating. What you stated is exactly what I have been doing as well, and I am up to six miles a day in walking. I think all of that plays a most important role in NED. Ann
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Wow Ann / teach, six miles a day is impressive! I need to work on the exercise thing. I have been upping my walking but nowhere near six miles.
Yesterday I deep cleaned my kitchen by accident - I saw a grubby shelf, thought OMG and wiped it...and was shocked and ashamed...the cumulative result of fours years of treatment laziness...once I started on one cupboard I couldn't stop...that was hard work, hope that counted as exercise because I certainly used up lots of energy and woke up some muscles! It was incredibly therapeutic, I did feel as if I was wiping not just dirt and grime but a whole lot of emotional cancer-related psychological stress and stuff out of my life. I never would have thought I would find deep cleaning my kitchen uplifting, but I really did!
Boo
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Boo: I find that any kind of work like that is rewarding in more ways than one, including the mental cancer cleansing. I do lots of yard work in the spring and summer months, and I find that it causes me to concentrate on that and forget about all the other stuff. Ann
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Boo, after the diagnosis in 2011, I stopped doing much to my house or yard, choosing to spend my time and energy elsewhere, on my health, on traveling and allowing myself down time not always 'doing' something. After three years, interest in the house and yard renewed. I fussed more with the house and pulled lots and lots of weeds from flowerbeds.
Last December, I quit work, part time aide in an elementary school, and have realized how much energy the job zapped from me. I think for several years I needed it as a distraction to deal with bc. But the past six months, I've been tending to the house with tlc, a drawer, a shelf, a closet or a room at a time, in a casual way, decluttering as I go. I spent a month redoing my son's room; I had finally noticed what sad shape it was in.
So I think your 'treatment laziness' was a good thing. We need to go easy on ourselves and give ourselves time to reevaluate what is important to us after such a diagnosis, and sometime the evaluation takes us in different directions that need to be followed.0 -
Good Morning fellow NED members,
Some of you have seen my posts over the past two years, however I'll make a formal introduction. I was diagnosed Stage IV from the getgo having a bone scan confirm multiple mets. In fact I had a pathologic fracture that was healing in my pelvis, the month before for diagnosis. You can see my bio in my signature. I own a wedding planning business and specialize in destination weddings, which feeds my love of travel. One year, not too long ago I flew over 110,000 miles for weddings. My poor sweet, patient husband felt very alone since I'd be gone at least 1 week a month.
I have a very strong Catholic faith, and know that the timing of my diagnosis was planned perfectly. On New Years Eve of 2013 I said out loud, I wonder why I don't have any destination weddings this year? 4 weeks later I learned why. I had a BMX with TE two weeks after dx. I had an allergic reaction to the steri strips so ended up with a second, unexpected surgery which delayed chemo for several weeks. But the day after my 3rd grandchild was born, I start CT. I had a complete response as evidenced by a PET/CT after 4 rounds. My Onc said, "a case could be made for no more chemo, on the day of my scheduled 5 of 6 rounds. I decided to add icing on the cake and voluntarily had my final infusion which was July 3, 2013.
I was able to keep my business running and in fact worked several local weddings during chemo, but it was taxing. Phew, I felt like a wet noodle most of the day, but have a strong team who stepped in and propped me up. I have almost completely retired from doing destination weddings because I am feeling more like a home-body and I miss my husband and family terribly, when I'm gone. We have six children and six grandchildren, all of whom live within a few miles of us.
Anyway, just last month I had my implants removed due to constant pain and discomfort. I have been able to wean off of Oxycodone, which I was taking for almost 2 1/2 years and now manage any residual pain with OTC.
My next scan is scheduled for September, so I'll blissfully and optimistically look forward to a wonderful summer. Thanks for letting me be part of a happy club, albeit one I wish I didn't have to join.
Thanks!
Amy
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Mrs M, Ann, yes I totally agree - treatment laziness was mandatory, during the three lots of chemo and six surgeries that I have experienced, even wiping a worktop was an effort - let alone cooking a meal. I didn't feel bad about not keeping my house in order during treatment, and have been focusing on doing other, nicer things more recently as my energy and interest in things other than coping on a day to day basis has returned. As you say, I was going easy on myself. The sudden impulse attack on my grubby kitchen was, I think, a seminal moment for me - suddenly I had the energy and inclination to sort out a big mess in my home. It has marked a real step change in my head - I tackled the bathroom this morning, and it will be the bedroom next, when I am in the mood and have the time.
I'm so proud of myself! Not just for having the energy and inclination to get the cobwebs shifted, but also because just like Ann, it seems that cleaning takes my mind away from the dark side - and my gleaming house makes me feel happier than I have done in quite a while. isn't it odd. I have never been that fastidious, and have remained a stranger to a duster quite happily for years, and it wasn't out in use before my diagnosis if I am honest. We are told to find our routes to happiness - and I never thought that I would find scrubbing off dirt, wiping down woodwork and turning out cupboards would make me happy. But it does! As I frequently say: stupid cancer!
Boo
PS Hi AmyQ, welcome to this thread, its proving to be very supportive. It sounds as if you have had a lot of treatment and a tough time - and running a successful business on top of it is wonderful - you rock! Hope you have a lovely summer and of course we will all await the news in September that your next scan is clear.
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Yeah, I had a burst of energy last weekend (extra week off Ibrance) and cleaned off the outside furniture, went and got new cushions, tidied it up out there. It has been a very long time since I did anything around the house other than the endless kitchen clean-up and laundry. It felt so good to see my accomplishment and to be able to enjoy that space!
Can I call myself NED if the CT still shows shapes of dead tumors shrinking, but there is no uptake on the PET? For over six months now. TMs back to normal, too.
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Treatment sluggishness. It is not that we don't want to move or do anything, sometimes it all just seems to be such an effort. 4 years in, initial tx and then stage 4 dx I am amazed at how little I can get done in a day. I was the person who could do 3 things at once, adjusting to my new "normal" has been a difficult transition for me, and those around me.
I do what I can and am trying to accept that I cannot do what I used to do
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Shetland Pony: Sounds like you're either there or close to NED for sure! Hope things just keep getting better and better for you!
Nel: I think we all are adjusting to our new "normal", but I know age has something to do with how I feel some days. I'm not old, but I'm not 20 anymore either, so I get tired more easily that i used to. On the days that my energy levels are high, those are the days I really enjoy getting things done. Ann
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Shetlandpony,
I think, at least with bone mets, they will always be able to see that there was once "something" there but it's no longer metabolically active. That's NED as far as I'm concerned! Some have argued against this,i.e. The evidence is still there, but so would evidence of a once broken bone be visible. We wouldn't say, I have a broken bone that's currently healed, so why say I have evidence of cancer but it's not active? No evidence of active disease might be more accurate but NED is what we've got. Take care.
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Actually, it was liver mets for me, along with retroperitoneal nodes and a new breast tumor. The PET-CTs show that I had complete metabolic response to taxol. The nodes are no longer enlarged or active, and the breast tumor can't be seen. The liver tumors are inactive and getting smaller. I'm very pleased about this, and hope Ibrance + letrozole can hold the line for a long time. NED or NEAD, it's a good thing.
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Boo, yay on the scan results!
NED or NEAD, both are good. In my case, they have not been able to find any evidence of cancer ever having been in my spine for many years now. It was all a bad dream...I wish. It's possible all that Zometa and weight lifting remodeled the bone to its original state.
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hey ladies! So glad to have came across this group and feel lucky to be here. I was diagnosed with bone and liver mets in March of 2014, 1 year after being stage 1 and having a PCR from neo adjuvant chemo. 20-30 liver tumors and some spots in my spine showed up on a ct scan. 8 months into a clinical trial of carbo/taxol/velaparib thankfully got me to NED which shocked my oncologist. 2 months later a new tumor popped up in the liver so I was switched to Xeloda which kept my tumor stable for a few months with nothing else popping back up so we met with a liver surgeon who resected 10% of my lower right lobe of my liver where the tumor was and am now recovering from that and back in NED land. It's been a rough recovery, but I'm thankful it was an option for me. I start my xeloda and xgeva back up this week being that I'm triple negative and don't have any targeted treatment options yet to help keep my NED status. Hopefully soon that will change, but just glad to be here with all of you! I'm 33 and have a 2 year old son who is my whole world and source of strength through all of this...
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Hi Adjtoth, welcome to this group - it sounds as if you have been through a lot of treatment in order to reach NED. Long may you stay a member of this thread. Hope that the xeloda continues to keep you free of recurrence. I'm glad you can tolerate it. Long may you run. Best wishes, Boo
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All of your stories here are so inspirational. I was diagnosed as Stage IV November 2014. Started neo-adjuvant chemo of Taxotere/Herceptin/Perjeta December 2014, six rounds. Completed all six March 31, 2015. PET scan and full body bone scan showed NED, my Onc said I was an Exceptional Responder and the tumor board has ok'd me to have masectomy on July 7. Originally was told I could not have masectomy due to Stage IV status, so am happy to be able to get surgery done. Have learned so much visiting here every day and when I feel down, coming here gives me inspiration and hope.
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That is great news, JC. I am so pleased for you, being told that you are exceptional responder must be very encouraging. I hope that your surgery goes well and that you recover swiftly and can then get on with living your life. I wish you peace of mind and an everlasting association with NED. Boo.
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Thanks Boo for your good words of wisdom and wishes too! Congrats to your NED status as well and I pray we all can stay this way for a loooong time.
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jc - congrats and moving forward! You gotta love that.
Adjoth - Welcome to the group. Long road to get to NED, but glad you are there!!
Had my 6th month CT Scan last week and continue NED - 2 years into Stage 4 DX So grateful to be here.
Be well
Nel
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Oh Nel, that is such good news! Before each check up scan I am always a nervous wreck, so if you are anything like me you will be breathing more easily again. I am so pleased for you!
Boo
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Boo - I try not to do that anxious thing, but not so well!0 -
Hey ladies! Thanks for the warm welcome!!!! Interesting thing came back from my pathology from my liver resection... The single tumor that they removed, came back as ER+ and possibly/most likely HER2+. We're testing the fish on that to be more positive, but being that I've only ever been triple negative, this is a whole new world for me. What treatments have you guys done in NED land for ER+ and HER2+? I've only had chemo as an option so I'm anxious to hear!
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Wow Adjtoth, that is good news! It means you are open to hormonal treatments such as an aromatose inhibitor like arimidex or letrozole, and also to perception as well - you are really going to be able to mop up ! Am so pleased for you!
Boo
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Adjtoth:
I think Boo is referring to Herceptin and possibly even Perjeta as treatment options for Her2+. Ann
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Oops yes I was! Sorry - can't spell! Boo
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I am ER+ and HER2+. Herceptin got me to NED. I did AC and TH, and I'm into my 5th year of Herceptin for liver mets. I've been NED since May, 2010. I also take Tamoxifen.Good luck!
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