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Life does not end with a stage IV diagnosis (really!)

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Comments

  • nbnotes
    nbnotes Member Posts: 338
    edited January 2020

    exbrnxgrl - Owww, I did the same thing back in October but it was only the nail area of the finger that got slammed. It turned black and just in the last 2 weeks the new growth managed to force the old lifting nail off. (Ironically mine was also the middle finger) I probably hadn't done that since I was a kid, and it was soooo painful. I feel for you especially coming after already being bruised from the accident. Hope it all heals quickly!

  • imagine
    imagine Member Posts: 96
    edited January 2020

    Hello all on this tread,

    Does life really not end with Stage IV DX???Happy

    I am fairly new to this Stage 4, Mets club. I am having a very hard time with all of this. There is so much conflicting reports on stats, treatments, etc. I started the Ibrance 125 finished 1st cycle without having to go lower Mg so far. Also Falsodex which other than the full minute of each injection and soreness that follows I am tolerated that one well. I feel ok but still hurting some from the VATS surgery to get biopsy for testing.

    I know I have plurera mets and some nodes in my chest that lit up in chest area. Only found out because my very stable CA-15-3 for over 12 years started going up. I still have no symptoms from Mets and I want to try to keep it that way for as long as possible.

    I want to believe I will be around for years, but sadly I read the stats and that dream falls away. My MO says women live for years on a treatment and then there is something else to use when tx start to fail. She also says that the CD4 inhibitors have revolutionized Metastatic BC treatments.

    I need to get on with my life but I feel I cannot plan much past a few months out, is this how you all felt in the early days of DX? ?

    I know if I only had bone mets my stats may be better but you can have more pain. I read on this site many people with viseral mets including lung and chest mets live a long time, hoping that is accurate. I am in the process of finding the right counselor to get help emotionally with this DX. Do any of you go to the conferences like Living Beyond Breast Cancer Metastatic Conference (LBBC) in PA., I believe it is in April this year. I have listened to their 2019 podcast of the sessions and sounds like something I need to do. I am very interested in the science and discoveries that seem to be happening faster these days and we need to get the awareness and more funding of this part of BC that no one talks about much.

    I see that Olivia Newtown John is living with Mets and has recently come out with Cannabis as being the reason for her tumors are shrinking. I wonder is she is doing traditional treatments also?. Cannabis is not legal in my state as yet but I take some CBD oil to sleep and pain sometimes, also small amount of THC oil too. I wish there were more studies on Cannabis. My MO says just not any money in doing studies to see if it helps such a shame. From what I can read with my pea brain it does help with Her-2 positive and triple negative tumors but with ER it can help with symptom control. Oh when does this get to be the norm?? I can't get through a day without thinking of how long I have, Will I see 3-5 10 yrs out?

    Our Lives seem so fleeting...Scared

  • cowgal
    cowgal Member Posts: 625
    edited January 2020

    Imagine - I have been dealing with this a short time as well. Something to keep in mind is that no one knows how long they have left. For example, Kobe Bryant and his 13 year old daughter did not know that yesterday would be their last day. I know that the day that my MO gave my husband and I the diagnosis of stage 4 that I picked up a booklet on the way out about MBC that talked about how these different women were going to try to live each day to the fullest and one lady who was a doctor immediately closed her practice to spend what time she had left with her family. It was more defeating than inspiring to me at that point. Then of course, we all look at the statistics and that further depresses us. We are told that we need to make sure that our affairs are in order, etc. It was pretty depressing and for a few days, when I was at home, I did not like being there by myself.

    There are some things that I think are good to keep in mind and have given me more hope now than the day I got my diagnosis: 1. 5 year statistics are out of date when they are printed. 2. Current strides in cancer research offer new hope. 3. Some of the drugs that some of us are taking have not even been on the market for 5 years. 4. Reading posts by others on here that have been surviving and doing well has been inspiring. 5. Shouldn't all of us have our affairs in order, regardless of if we are sick or well? 6. Obviously, we all want a cure but could we be getting closer to making MBC a chronic illness? 7. Someone is beating the odds and it might as well be me!

    I hope that helps and maybe some of the ladies that have been dealing with this longer can chime in.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited January 2020

    I’ve been stage 4 for a year. On ibrance/letrozole for about 6 cycles. 125 mg. I always knew from first dx it could come back. So it did.

    Does this slow me down? No. I can’t afford to travel, so I do exactly what I planned to do when I retired 10 years ago. High stress job then, now my days are at the dog park with my fur kids and like minded ppl. This isn’t for everyone, but works great for me.

    Do I worry how long I’ll be around? Not really. As was said above, Mr Bryant and his DD didn’t know yesterday would be their last. Neither do we. So why spend precious time worrying about something we can’t control?

    Dr Google isn’t your friend. Your MO is. Keep on keeping on. You can do it.

  • imagine
    imagine Member Posts: 96
    edited January 2020

    Hi Ali just got a call from my mentor at IBBC She was very inspiring She was Dx with Metastatic in 1998!!! 21 yrs out She is still traveling and very well, her Dx has been Triple negative, Er+ and triple positive She said ever time she got a progression there was a new treatment.Wow!


  • candy-678
    candy-678 Member Posts: 4,177
    edited January 2020

    Imagine and others in this conversation- My thoughts: Yes, look at Kobe, or the innocent victims of a mass shooting. No, they did not know that day was to be their last day. None of us know. BUT, the big but, we MBCers are more acutely aware of our timeline. We do the scans, we take the meds, we learn the meds have stopped working so we move to the next med, we get sicker and weaker. Yes there are some on BCO that can say they have reached 5 years, 7 years, 10 years, or more. But some, God bless them, Lita, A Beautiful Sunset, Muddling Through to name a few, have died way too soon.

    I retired from my career (couldn't do it anymore) at the age of 49. I live frugally. But now I volunteer and do things that I want to do--read a book snuggled up with my cat or watch an old TV show. My priorities have changed. I am a little over 2 years diagnosed. I am still on my first line therapy. I pray I stay stable for a long time. But realistically, with liver mets, things can change suddenly with any scan.

  • anotherone
    anotherone Member Posts: 555
    edited January 2020

    imagine , thank you for this inspiring story.

  • olma61
    olma61 Member Posts: 1,026
    edited January 2020

    I was pretty numb in the beginning and my oncologist gave me a fairly optimistic pep talk, so I really didn't fully take in the “terminal illness" aspect. Plus I was asymptomatic and really absorbed with preparing for and getting adjusted to treatment. But after a few weeks, I did some reading and I was all “Will I be dead in two years"

    This is month 27 (month 29 from the day I found my lump)and I'm not close to dead yet. Life goes on pretty much the same as before with a few wrinkles.

    I did some backup planning but I do not dwell or stay focused on what could happen in the future....or even at my next scan. I try not to think much about what the next scan*could* bring without getting too overly confident about how well I’m doing.

    I definitely do find the stories of long term survival encouraging. Why not me too? “The median is not the message" as Stephen Jay Gould once wrote

  • olma61
    olma61 Member Posts: 1,026
    edited January 2020

    exbrnxgrl, sorry to hear about your accident and smashed finger. Feel better soon

  • sondraf
    sondraf Member Posts: 1,701
    edited January 2020

    I'll chip in too here as I'm new to the scene - just finishing my second cycle. I've found that lately I don't think about MBC nearly as much as in those first few weeks. Those weeks were terrible, trying to comprehend how/why this was happening, how unfair it was. I think I finally got to the acceptance end of the curve in the last few weeks, and that has brought some peace, along with getting the hang of the whole hospital scene. The other weekend I spent time with writer friends at a workshop and I'm pretty sure I didnt think about cancer once over those two days. I wouldn't have believed someone if they had told me in early November that would be possible.

    There are things I need to do (get affairs in order) and things I want to do (travel, new career or some business), but from seeing some of these ladies on here living their lives on their terms and how they want, even with things like brain mets, it is really inspiring. I think Piggy is so cool doing what she is doing with law school. Its helped me realize that if I want to go back and do that masters degree in something I am interested in (and should have done 15 years ago), then why not? If it makes me happy and fulfills my days then that is the way to go, rather than a job I have no passion for. I was really only existing the last two years and now I feel like I'm starting to live again, if that makes any sense. There is nothing to lose at this point.

    Finally, no one other than my partner knows my actual stage, not even my parents, let alone friends or workmates knowing I have cancer. I've found keeping this under wraps eliminates the risk of questions. There will be a time and a place when I am clearly Cancer Patient, but that isn't now. Now is for living well (although perhaps with a few new limitations) and living in the now, whether that is cuddling with the kitties, cooking dinner for my partner, or finding something new to try.

  • imagine
    imagine Member Posts: 96
    edited January 2020

    I have let some friends know and my family as I was early stage survivor for so long. I want people to be aware it doesn’t matter how long you are out of a early stage you can get Mets. I knew I could but thought since so much time had passed I got to where I hardly thought of it anymore. Yes, I agree we have to live on our terms now and that is liberating! I have gotten all my financials, wills, living will, POA in order. I will be downsizing my home most likely by end of 2020 to free up a lot of equity to help with expenses etc. House is paid off. Kids are grown and on there own and doing well. I been here for all my grandchildren. Now I will find out my passion and go for it!!

  • nopink2019
    nopink2019 Member Posts: 384
    edited January 2020

    Still getting my mind around MBC and how to go forward. I had 2 different chemo treatments that I had to stop after 1 round each as I couldn't take the toxicity. That really put me in a funk and ate up about 3 months of worry and dealing with side effects. I've been on this current protocol for almost 3 months and will go for my comparative scans in a few weeks. (sing it! AN-TI-CI-PA-TION) After such a rocky start, at my last MO appt I was expecting bad news (but got good results on labs so started round 3). But I had worked myself up to such a state that the MO recognized the depression and recommended Lexapro. Think it might be helping. Fluid on my lungs and back pain has really altered my daily activities (no hiking, skiing, weight lifting, yoga). I have reduced appetite and energy. I still can't put the statistics out of my mind, but reading this has helped me to hear inspiring stories of women who are handling this better than I. Thank you for the inspiration. (And thanks to those who sound a little less certain, too. Know I'm not the only one.)

  • Bliss58
    Bliss58 Member Posts: 938
    edited January 2020

    Hearing something like what happened to Kobe Bryant, his daughter and their companions helps me put Stage IV in perspective. While acutely aware of a diminished timeline staring me in the face, I try not to dwell on it. MBC may eventually take me, but today is not that day. In the meantime, I want to enjoy life to the best of my ability in spite of MBC and all it brings.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited January 2020

    olma,

    Thanks! Like I said, I think I'm just going to fall apart piece by piece 😉

    Imagine,

    We wish you weren't here, but welcome! I have been NEAD for 8 1/2 years. I will be brief because I still work full time teaching first grade and am totally exhausted! I'd be happy to answer any questions you might have about cannabis as my state has been legal for medical patients for years and is now legal for adult rec use. There is also a thread called a Cannabis Basics that's a good place to ask questions. Here's the link:

    https://community.breastcancer.org/forum/79/topics/874792?page=1

    Sorry I can’t write more tonight. It’s bedtime for me


  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited January 2020

    Caryn, sorry to hear about the double-whammy you’ve recently experienced. It sounds very jarring. I hope you are mending well, even if it is slowly. Not sure how you held it together long enough to get your class settled before seeking attention for your finger! Ouch-EE! It sounds like you were attached to your car, and if that’s so, I can relate. I had mine for 13 years, still in reasonably good shape, but had to make the decision to get something more reliable for longer trips. Up to that point, I hadn’t realized how very attached I was to my old car, and even tho its replacement is a very nice upgrade with lots of bells and whistles, I mourned my old car for quite a long time.


  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited January 2020

    Imagine, yes, all aspects of life go on after a diagnosis of mbc. Meaning, the bills still come in the mail, relationships can still be complicated, the house still needs cleaned and so on!

    But aside from the regular routines, we can still experience deep, personal, satisfying moments and times. And experience those light-hearted, gosh-I-needed-that to lift my spirits kind of moments, too.

    It may seem limiting to feel like you can only plan for the near-term, just a couple months out. In my case, I learned to live more in the present. I do want to live the fullness of one day. It’s okay to slow things down, take it all in, soak in the good times. Then hopefully repeat the next day. After awhile, yes, you get used to a new normal altho you may grieve for the old way of life, too.

    I was one who really freaked out at first after the mbc diagnosis. Eventually I learned to frame it as living with mbc, not dying from it. Some of the most wonderful moments and times of my life have come after I was diagnosed, not because of mbc, but in spite of it. All my best to you.


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited January 2020

    Ladies, welcome to our newbies, despite not wanting to be here.

    I am constantly amazed and inspired by just how ‘new normally’ we are living. Recognise also we are dealing with staring death in the face and we have friends who have not made it this far. However, feeling grateful as others have said, that today is not the day I die. We get up in the morning - albeit stiff and jet lagged. We deal with whatever meds and crucially we LIVE. Some days that might be just reading a book, another might working or may be a 6 mile walk or travelling somewhere we choose to spend time.

  • Kimchee
    Kimchee Member Posts: 94
    edited January 2020

    That's my motto - Why not me ?! We live in a time where new treatments are coming out faster . So WHY NOT ME ?! Somebody got to be the first person to get pass this disease. Live life be happy and do what you want to do ! God Bless you all

  • mnsusan
    mnsusan Member Posts: 139
    edited February 2020

    Another newbie joining the group. I've been recently diagnosed with metastatic disease in the lymph nodes in my axilla and mediastinum, and also a few spots in my lungs. I am so grateful for all the information and support here. Yes, its a bit overwhelming right now. I know it won't be a walk in the park but its so nice to hear from others that are living with this diagnosis. Chemo starts Feb 24.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited February 2020

    Welcome to you Susan. Yes we all understand the overwhelming stuff, even if everyone is different. Try to breathe and not panic. The more relaxed you can be the easier on yourself, family/ friends and your medical team. Best advice given to me by a very experienced oncology nurse.

    We are all in this pretty crappy boat, but amazingly we just keep going!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited February 2020

    Not only do we keep going but if we can, we focus on living with bc, not dying from it. I don’t deny that at present bc will get most of us far too soon. But, that may be a number of years down the road and who knows what new treatments may develop in those years. It’s been 8 1/2 years for me and there was no way of knowing I would do so well at the beginning. I am so glad I focused on living. Yes, I’ve had side effects and a very major complication but I’ve also done a lot of living in those years and became a grandmother 3X!

    Tomorrow is the big day! I get to meet my new mo. I was also able to score an appointment with my new ophthalmologist an hour before the mo and both docs are on the same campus. I usually hate taking the day off from work (Writing plans for a substitute teacher is no fun) but two appointments make it well worth it. Wish me luck

  • nopink2019
    nopink2019 Member Posts: 384
    edited February 2020

    I'm inspired by you who are still working. Most days I try to stay in PJ's and just piddle around the house. I don't go outside much, just seems like more effort than its worth. If I stay home I don't have to shower or put on makeup and wig and pretend I'm not me. Started Lexapro which has helped attitude some but not energy level. When I go out with friends I can put on the "happy face" for a few hours. But many times I look at my calendar to see what I can cancel. 1st comparative scans coming soon and I can't sleep worrying about the results. Then family & friends want to get together and I'm not sure that I'm going to want to see anyone. Can't cancel houseguests, even those who stay in motel so as not to be burden. Tough couple of weeks, I'm afraid.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited February 2020

    nopink2019,

    I am so sorry that you are going through a tough time. I think many/most of us have been there at one time or another. Some of us can work, for others it's not possible. We just have to deal with the hand we're dealt. I have been able to work almost since the beginning of my dx. I adore my job and am very committed to it. It also gives me great purpose, but... I am exhausted at day's end and although I enjoy socializing, I find I need more time to unwind alone. At age 63, I am definitely looking at retirement in the next year or two. Stage IV is not a monolith and we are all different.

    Updates:

    - Met new ophthalmologist. I like him more than the previous one. However, we are trying to figure out why my eye drops for glaucoma (preservative free) continue to cause persistent eye irritation.

    - New mo! So far, so good. We had a long appointment and my younger dd joined us. She is my second set of “ears". She seemed to be a good listener and asked me as many questions as I asked her. That was a good sign. My dd pointed out that she spoke at a normal rate of speed. I looked at her quizzically and she pointed out that my previous mo spoke really fast. Now that she mentioned it, I realize that she did! Anyway, my new mo and I are off to a good start.

    - I picked up my new car last week. I haven't had a new car in 13 years so there is a lot to learn, but I am enjoying the new technology and bells and whistles. Love the back up camera, power folding side mirrors, power lift for rear hatch back (it's a small SUV), keyless entry, push to start etc. I think it will take a few months to figure everything out 😉. I still feel bad that my 13 year old loyal workhorse met such an undignified end.

    Hope everyone is doing as well as can be and finding joy whenever and wherever you can !

  • KerryD
    KerryD Member Posts: 4
    edited February 2020

    I see some things about this stage 4 that is I’m changing my life compass and not taking things for granted.

  • spookiesmom
    spookiesmom Member Posts: 8,178
    edited February 2020

    Hahahaha I’ve had my car almost 4 years, still haven’t figured out all the stuff on it!!It doesn’t have ALL the latest bells, for as much as I drive, figured I don’t need them anyway. New cars are always fun, enjoy it.

    Glad you like your new MO, sooooo important.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited February 2020

    spookiesmom,

    Yes, there are definitely features that I will probably never/rarely use. Unfortunately to get some features I did want I had to choose a certain trim model that came with a few features I could live without. All in all I really like it but I am blown away by the huge number of changes that have come along in 13 years.

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited February 2020
    Caryn, did you go from a car to an SUV? That’s what I did two years ago after also having my car 13 years. I loved the car but do like sitting up higher in the SUV; it makes me feel more confident on the road. There are some other great features, too, and one I especially like is the blind spot detector on the side mirrors with both a visual and an alarm if you turn on the blinker and a car is in that blind spot range. Again, it goes to feeling more confident as a driver. Still, it took me over a year to bond with the SUV!

    Nice to hear the new mo is working out, too.
  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited February 2020

    Hi Camille,

    At a whopping 5’ 3”, I also like to sit up a bit higher. My dear departed vehicle was a compact SUV as is the new one. I could never go back to a sedan. My rental car was a big Chrysler 300. I absolutely hated it.
    I do love all of the driving assistance features but will have to get used to them and I feel very comfortable with the size of the car. Not too big, not to small. It’s my Goldilocks car!

  • divinemrsm
    divinemrsm Member Posts: 6,621
    edited February 2020

    I’m also petite in height and use the Goldilocks standard to find the right fit!

    Dh and I recently ordered new LaZBoy recliners. He’s a foot taller and 100 lbs heavier than me, so we have different chair requirements. He found the right chair for himself quickly, but I went to the LaZBoy showroom seven times trying chairs out until finally making a decision. Lots of Goldilocks going on: “too hard” “too soft” “too bulky” etc. Although our chairs are different styles, they’ll be covered in the same fabric. I am looking forward to getting them!


  • nopink2019
    nopink2019 Member Posts: 384
    edited February 2020
    I've had my scans and results show "stable". Lung fluid has decreased from 3/4 full to 1/4 full. All this was great news to me. My attitude and outlook are improving. I'm encouraged by your stories and plan to give more focus to "normalcy".

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