Stage IV NED crew : lets support each other
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My husband still works but goes on more trips than me. He's his own boss while I have to be accountable to the dog and the daughter. Oh well.
Philly, I don't think you can equate NEAD to stable or neither better nor worse in theory. Although I always thought if you are not cured than in practice you are stable if you are NEAD. You just can't see the cells proliferating. In order to be stable this means the number of cells dying compensates for the number proliferating. Or they are all dormant and we still have no idea what wakes them up.
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Vevs, thanks. I look like Dobie the House Elf if I pull on my ears. I have a very nice wig but it doesn't feel like me. It is so much thicker than my own baby fine curls. I actually like what my DH calls my "avocado picking" scarves. I have eight. But weather is getting cold and wet here and it is time to bring out the wig and a rain proof hat. I see my MO tomorrow. He always has filled me with optimism --- a HUGE part of the treatment.
Hugs to all you ladies!!
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Hi everyone,
I am so happy to be joining this thread. I had my Pet yesterday and I am now NED!
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Brilliant news Simone! 👏🏻👏🏻
Liz will check out the Horseshoe inn - spent a week walking around the Pickering area ( Thornton-le-Dale) a couple of years ago. Lovely! Know what you mean re solo travel - I’ve just embraced retirement (although not officially as still signed off sick) with a Club 50 railcard. Off to see my old friend in Elgin for a few days at the end of the month for peanuts money wise and took myself to another friend’s family holiday home in South Uist for a few days earlier this month. My husband works part time now so we do have a bit of flexibility and we’re having a couple of nights in Portpatrick next week. After 32 years being stuck with school holidays I love the flexibility!
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So pleased to hear your NEAD news Simone.
Karen, yes it is great to be able to go away outside of expensive school holidays.
I am also visiting family on 22nd November. They live in Christchurch, Bournemouth.
Will keep you posted about the Scotland plans. May take my daughter to Edinburgh over her sixth form college half term
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Liz Edinburgh with your daughter sounds like a very good idea! Yes just let me know if I can help
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Simone.....great news, so happy for you! Elderberry...you look great with your scarf, i didn’t graduate to scarves, i compared my bald look to looking like a turtle, I would have preferred to look like an elf to be fair!
Liz and Karen you both sound like you’re in a good place and the sun is shining here again today so life is very sweet
Elen xx
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Lovely Elen you did not look like a turtle although you can always come and live with my tortoises who are enjoying this lovely sunshine. Good luck with your scan and I look forward to hearing about you continuing to be NED. x
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Hi, all, I'm new to this thread, but it seems like the place for me. Diagnosed with Stage 4 right off the bat when I found lump in 2013 (age 44), had a rib met and had lymph nodes removed with bilateral mastectomy. Radiation to rib made it basically disappear, so yay! Recurrence in same breast in 2016. Lumpectomy and radiation took care of that and so have been NED for several years.
My problem, like a lot of women, is anxiety, depression, PTSD and fear of my 6-month CT Chest/Abd/Pelvis and yearly Nuc Med Bone Scan. I feel as if I live for the 3-month check-up, then the 6-month CT, another check-up, another bone scan, etc, etc, etc. I think about this every day in one way or another, and the most recent thing I've had to contend with is whether or not to continue contributing to my 401(K) at work. I'm 50 years old and when people talk about retirement planning, how long they have til retirement, what they're planning to do, etc, I get angry because I can only plan for my next 3 month visit. I'm trying to live my life, but having to go to work 40 hrs/week (necessary) seems so damned useless to me. I'm wasting my life at this place that I don't even like. Unfortunately, I'm kind of stuck here, no other options in sight. My husband, who has been unbelievably supportive and loving throughout, thinks that if I give up contributing to my 401(K), it's like giving up/giving in. I feel the opposite in some ways because I am the one who has to live with this (and ultimately die with this), so I want to live my life the best way I can now. It's not a lot of money that I'm contributing but if I stop, that's one more vacation I could take this year with my husband and 15-year old daughter.
I know new meds are coming out all the time, and I know I've been incredibly lucky so far in that I haven't had to deal with much yet. But I know the statistics, I read the threads and am wondering, is it realistic to plan for 15, 20, 25 years out?? And equally as important, how do I deal with the anger? I don't really do the God/higher power thing since this whole sh*t-show started and I don't see how a counselor could help me. I figured I'd start here with people who are living with this every day and understand exactly where I'm coming from. Sorry to be such a downer when it's almost the weekend... I've just finally reached a point where I'm getting more scared for every visit, waiting for yet another shoe to drop.
Alright, enough of this for now... looking forward to hearing from anyone who might have suggestions for me... thanks... Rena
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Rena, I'm in a similar position, living scan to scan and find it occupying my thoughts all the time. I can have 2 years paid leave from work but I have no idea whether to the take it now or wait until I'm "sick ". Should I be working while I'm still able?
It would be different if I loved my job but it's stressful and I'd much rather be doing school drop offs and being there for my son more.
I could be dead next year and wasted my time at work or be that one miracle case that lives 30 years. I'm NED at the moment but I think the moment I have progression I'll be giving up work. No advice but I get where you're coming from.
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Oh Rena, That's a toughie right there . I'm not good with words, bit I will try
I understand the idea of living life while you can. Being in this position with our mortalities hovering over us more so than those without illness is tough. I've felt a lot of this too. .Do I give up working and go on trips, make memories, spend every second with my 4 year old while I can, before this disease catches up? and I wont enjoy it then? Does giving work up mean I'm giving in? Should I just spend the money? Should I just say " fuck it!" And do whatever I want ? I thin k a lot of us grapple with that. And being in the position that many women like us wish to be in as NED makes it all the more muddled if you ask me. We just don't know when or if it's going to come back. But the truth is, is that we honestly don't know when our time is up, disease or not.
I don't think giving up work is giving in. I think it's really just you trying to have a good life doing the things that bring you the most enjoyment and purpose. If that's what you feel is right , then go for it . If you feel like you can financially swing it, go for it. Or you could find work whether for money or as volunteer, that gives you purpose. I think in this life, we gotta be happy. We can't spend our lives miserable. And if your job brings you misery, I think it's time to let go or find something else.
I just try to live between the good scans as normal as possible. I do think of cancer everyday and I don't like it. But I have routine that keeps me focused and a 4 year old that keeps me busy. I do work still because I am 31 and I need to. But I am also in the position of feeling really good
I'm sweaty all the time from menopause and Letrozole, but I find being back in my work environment and routine gives me normalcy as well as a distraction. Sitting at home while on treatment was literally just torture. I'm not one to be idle.Do I have anxiety? Yes , 100 % , I worry about recurrence more than I'd like to admit, but I keep trucking along. I don't think scans ever get easier, but I find I have a little more faith the longer time that passes.
Have you thought about therapy? I go and I find it grounds me and gives me new perspective when I'm going down that dark rabbit hole. I don't know if this helped at all, but I hope you find something that makes you happy and settled, whatever that may be.
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Philly, I see stable as NEAD or else I shouldn't be here. My MO always refers to me as stable. I think she thinks no one at Stage 4 is really ever without disease, but if there's no evidence of progression you're stable or NEAD.
Rena, I felt the same as you about my job, not that it was misery, but that I needed to stay at least a couple years more to keep contributing to my 401K, but then THEY kicked me to the curb! I was floored, but you know what? I'm actually glad now and thankful they did. Granted they did give me a semblance of severance and now I'm on unemployment so I do have income for the time being, but I now realize that I was becoming unhappy, not so much with the job, but my employer and wasting time. I feel like I need to live life while I can in case I don't have years left, even little things like being able to go see a friend whenever I want or go help my mom makes me happy. Not working was so strange at first, but now I so appreciate the time I have to enjoy life. My husband thinks we may be able to swing it without me working once UI stops, so if you can too, I encourage you to and don't waste time at a job that brings you misery and saving for a time you may not see. It is a balancing act of what ifs?. Sometimes I think while we're spending money doing things I want to do now, what if I do live 15 more years? Well, we'll be broke, but what if I don't? In that case I'll feel satisfied that I lived my best life and I had fun making memories with family and friends. Trust your heart.
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Ladies, ditto to pretty much all of the above in terms of work, stress and just ALL of it! One or two wee thingsthat help me:
- IF you can make the money work then you have some choices...what to YOU actually need / want? You could choose to take some time out and look for something else as suggested. That would allow for the feeling of not working....if you are a busy person, you’ll be a busy person whether you get paid or not, even if you’re just gardening!
- My husband also gave me ‘you’re giving up’ lecture and wasn’t happy about my giving up work as this was a huge focus for me ( no kids). My response, prove him wrong! Something simple such as we now look after a friend’s pup while she’s at work ( bonkers and very cute cockerpoo, he makes us laugh and is very loving) gives us focus.
- I didn’t think counselling would help me either, but found speaking with a completely independent person helped me clarify my thoughts and I now actively seek ways through local cancer support charities to help myself and save some money e.g. complementary therapies and a year’s nice leisure club membership donated and gifted to me. I don’t however go to a support group, you ladies do that for me!
- I’ve accepted that I cannot actually live well with the cancer in my face 24/7. So I try and ‘ Park It’ unless something needs attended to (scans etc.) that is much easier said than done and takes practice!
- Accept from and give support to the friends who can cope or who are also cancer patients, sometimes it helps to feel grateful ( I currently have a friend going through her second ovarian cancer chemo schedule - she’s struggling and I feel very grateful that I’m in a better position than her right now).
Just some thoughts......0 -
Hi all
I finally got the full CT scan report from 2nd Sept which was incredibly positive. There is no evidence of disease and if I had presented as a new patient, they would not have identified any abnormality. I feel so lucky. It is still sinking in.
I am on the Cleopatra trial and the end point data shows 37% achieving 8 years post stage 4 dx on this first line of treatment. Perhaps I can dare to dream a little?
We spoke about a Perjeta injection. My oncologist has a degree of cynicism regarding Roche in the sense that they brought out the Herceptin injection very close to the time when the patent was running out. Introducing the injection then reset the patent for this Herceptin jab as they added a new ingredient (to make it less painful) and that means they own a brand new patent for a new version of Herceptin. Why relevant? He believes a Perjeta injection will become available but only when the patent is due to end.
Hopeful times?
Liz x
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Congrats Liz. What is the Cleopatra trial?
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congrats Liz!! Amazing news to receive about scan results! I can understand the feelings around letting it sink in. It’s a process...it took me like a whole week to really wrap my head around when my MO said I was stable. Hope you celebrate!!
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Hi LovefromPhilly and Simone,
Thank you for your good wishes. I am still letting it sink in today and have requested a copy of the report.
The Cleopatra trial is Taxotere ( usually 6 cycles), combined with Herceptin and Perjeta. The latter 2 are targeted therapies that I will be on every 3 weeks until progression. I managed 4 T due to adverse side effects. This trial has been running a while now and they are just looking at the final data.,
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Liz, outstanding news! Happy Dancing for you. Congratulations, and keep doing what you're doing!
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Thank you Bliss!
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Well Liz.... amazing results... and yes you dare to dream a little! 👏🏻👏🏻
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Nice to see so many of us active in this forum-yay! Just checking in to say all is still (knock wood) fine with me! In November it will be five full years from completing initial treatment (chemo, mx, radiation).
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Awesome, Screech, and thanks for checking in! Keep knocking wood and congrats on the upcoming 5 years!
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That's awesome Screech. Congrats!
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Hello all, had my PET scan yesterday and today got a call from the nurse - ALL CLEAR! Back to NED land for another six months. So happy and so grateful, my rads worked well and no other little nasties have awakened. My doc did order an ultrasound on my thyroid because the radiologist noted that it appears enlarged (no change from previous scans and no uptake) This is actually not new, my thyroid has "appeared enlarged" on one side even to the naked eye for many years. Have had the gamut of thyroid bloodwork over the years with no issues apparent. Never had imaging done, but I'm not too worried.
Overjoyed to see so many of you posting good news. Love and continued blessings to us all xoxo
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Congrats! Welcome to the NED group.
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brilliant Olma
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So happy this thread is here! I have been reading up on previous posts. So happy to add mine! As of Wednesday, October 3rd, my pet scans showed No evidence of active cancer! I am so happy! God is so Good! I will be doing Tecentriq(immunotherapy) every 2 weeks and xgeeva shots, and pet scans every 3 months. I was told that my hair is going to grow back and I am just ready to ride this wave i am currently on!
***all smiles***
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Wonderful news nayda. Love seeing fellow triple negative ladies on here
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Liz, Olma, Nayda, Screech and anyone that I may have missed, I’m so happy for you all and also happy to be staying with you. My ct scan last week was great, stable sclerotic lesions, uterus , cervix much improved. Miraculous really as I haven’t switched treatments and have had abnormal uterine or gynaecology issues from first MBC diagnosis. 3.5 years and I’m still bouncing around. Marvellous thread, and so much joy
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Vevs, that ‘s such great news! Onwards
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