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

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  • Lily55
    Lily55 Member Posts: 3,534
    edited August 2019

    Hi Caryn, great to hear you are still our boomerang!

    Lita I am so sorry to read this, are you sure its months and not just a pessimistic Doctor? What a terrible shock for you, hope you will get to do some bucket list things (why is it called a bucket list)

    Sorry I have been missing for a while, I have been thinking of everyone but have slept a lot and I went in to a kind of denial as chemo was suspended as i was too ill on it......and I SOOO enjoyed not having weekly visits to the hospital and having to see Dr. Doom..... and was struggling with things like how do I get through this with someone I don´t trust and who seems to not trust me and who I cannot change. I started to feel LOADS better, even got driving again, not far but up to 30 minutes.....I stopped Zofran as did not need it and generally felt better with more mobility, I went out places and lived more of a normal life, even got a little hair back.......but I saw Oncologist yesterday and am now back feeling very depressed and trying to make a decision as to whether I do any more chemo or stop now..... She told me the latest scan was very similar to the first one but then I have only had very little treatment (2 cycles of Taxol)......was disinterested in the fact my expander is causing me pain or my two new lumps.......and basically said I need to choose between Cabecitabine or Gemcitacabine and said while I am feeling good make the most of it.....

    The impression I have is she does not expect me to last long, and almost blamed me for being so intolerant to chemo....it seems that she is saying I will need to be on chemo for ever and certainly I met another patient yesterday who is on just that road with her MBC........

    Another thing....I don´t understand is how a lobular cancer can now have zero hormone positivity when it is a hormone dependent cancer and I was told the metastastic cancer is lobular......

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  • Lita57
    Lita57 Member Posts: 2,437
    edited August 2019

    Stage IV people will have to stay on chemo forever - or until WE say we've had enough and want to stop - it's not a cure, it's just supposed to keep the cancer in check. Thankfully my MO let me take a break for a few weeks. I was about to lay down across the freeway and let somebody run over me. . .the pain, fatigue, GI issues, and weakness were that bad.

    Doing a little better this week, but I'm not in denial. My body is slowly breaking down, and it's only a matter of time now.


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  • ucfknights
    ucfknights Member Posts: 102
    edited August 2019

    hi. I’m wondering if there are any 5+ year triple neg stage 4 survivors? You girls rock

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2019

    Hi ucfknights,

    Can’t answer your triple neg question, but have you checked the triple neg threads? Hope you do wii and let us know what “normal” things you’re up to.

    Lily,

    Sorry to hear of your chemo struggle and a less than lovely relationship with your doctor. Is there any possibility of a change.

    Lita,

    I am always awed by your ability to look at life with both a touch of humor and pragmatism. I am happy to hear that you’re having a better week.

    School starts next week. My dd’s are taking advantage of my last days off by having me watch my grandchildren, but it’s one of my greatest joys so I’m not complaining😍. My classroom needs lots of TLC in order to be ready for my new bunch of kiddos 😱

    Take care all

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  • Lily55
    Lily55 Member Posts: 3,534
    edited August 2019

    Sadly there is no possibility to change oncologist as there is only one at the hospital and not allowed to transfer to the main city hospital.......

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2019

    Lily,

    I was afraid you were going to write that, as I remember you writing about it in the past. I wish I could come up with a creative solution for you, but do remember I am thinking of you and hoping tomorrow is better

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited August 2019

    Sadly, my daughter had to put down one of her precious rat babies who developed awful pneumonia, but showed no signs to us until it was too late. We miss our sweet Winnie. Tomorrow is her 20th birthday though and we're taking her out to dinner and a Rockies game. She was 16 when I was dx, so I am celebrating and grateful for this next milestone, and then she's back to college classes locally.

    Happy back to school, Caryn.

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited August 2019

    Aww, Bliss ..pets really do keep us sane..... and we do properly grieve when they die....took me probably a year to even partially recover after my 18 year old cat Frankie, had to be put down. Wasn’t expecting to feel quite so bereft, he was only a cat after all.......

    Caryn, hope your first days back in with your wee ones are enjoyable... if tiring, which they probably will be!

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited August 2019

    Thanks, Karen. Pets really are a joy, but when my DD said she wanted to get rats, I thought, rats??!! I never thought of them as pets or having personalities, but they really do and they are so sweet.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2019

    Thank you for the back to school wishes, bliss! Today was the first official day back for staff, but most of the teachers were in and out of their rooms last week. Tomorrow is a full day of prep and I have a short meet and greet with a student who gets very anxious with a new teacher. Wednesday is the first actual school day.

    Rats turned out to be good pets. My dd’s Pre-school had pet rats and they were lovely. Much better than hamsters, of which my girls had several when they were growing up

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited August 2019

    A week in South Uist ( Outer Hebrides) taking my friend’s pup and staying in another friend’s renovated Croft house. Just what the doctor ordered!

    image

    image

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited August 2019

    Just beautiful! Enjoy.

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  • Tina2
    Tina2 Member Posts: 2,943
    edited August 2019

    Karenfiseb,

    Wow! That looks thrilling, dramatic and chilly .Hope you headed back to the Croft house for a cup of tea/something stronger. We just finished watching an episode of "Shetland" in which everyone was wearing sweaters or parkas. It's been 90+ degrees Fahrenheit here in Maryland for a good part of the summer!

    Tina

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  • gailmary
    gailmary Member Posts: 332
    edited August 2019

    Wow Karen! Now that s a beach!. I felt like i was at the ocean this weekend myself though I was only at the shore of Lake Michigan. Those little trips and threads like this one are great reminders that life is not over with mbc dx. Next month - hiking in the remote north woods of Wisconsin for 3 days.

    image

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited August 2019

    Tina, not so much the temperature, it was around 20 degrees C.... it’s the wild island wind! When I was up in April to help my friend set up the house for the season, we lifted an old heavy double mattress out into the garden. Found it the next morning having blown over a 4 foot high wall and landed on top of our car! 90 degrees F toooooo hot for us Celts

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  • Tina2
    Tina2 Member Posts: 2,943
    edited August 2019

    Yikes--that's some wind!!!


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  • Andi67
    Andi67 Member Posts: 423
    edited September 2019

    Just returned from a 7 day hike around the Matterhorn. Cervinia, Italy to Zermatt Switzerland. Absolutely amazing, although I will admit - way more strenuous than I had imagined. 8-12 miles a day! I'm exhausted, but so grateful for the opportunity! Life is definitely not over! XO Andi


    image

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  • Anotherone
    Anotherone Member Posts: 633
    edited September 2019

    looks great:)

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited September 2019

    Wow Andi looks great and much respect managing the mileage

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  • Rosie24
    Rosie24 Member Posts: 1,046
    edited September 2019

    Andi, That’s quite an accomplishment, at least from my perspective! I have also been to Zermatt with family members some years ago, but our daily hikes were nothing like your mileage. The scenery is beyond beautiful, thanks for the photo

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  • gailmary
    gailmary Member Posts: 332
    edited September 2019

    Very cool, Andi. A bit jealous here. I can't take the elevation! So happy for you.

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  • Bliss58
    Bliss58 Member Posts: 1,154
    edited September 2019

    Andi, what beautiful scenery! I'm jealous, too, but also very impressed at your hiking mileage. Glad you got to do that trip.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2019

    Andi67 - Wow what a gorgeous view! I spent some time in Switzerland this summer, but I just did cable cars, etc. to the top of a few mountains. Wasn't brave enough to hike like that!

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  • kglee
    kglee Member Posts: 40
    edited September 2019

    Hello! I was just diagnosed with stage IV with mets to the liver. I haven't began treatment yet, pending insurance approval. Will be on Ibrance and Faslodex. As you all know, it's been scary. I am even scared at telling my family. But most of all my scared of it dragging me down. I am active, love the beach (southern girl here), and walk 3 miles a day. I loved seeing all the pictures of hikes, beaches, etc. Thank you for all the positive comments, it helps to know I have active years to come. Prayers to all.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2019

    Welcome, Karen! Yes, the beginning is scary and filled with so many unknowns. I hope you’ve checked out the liver mets thread. Although no one can guarantee anything about your future, many are surprised by periods of normalcy. Some even have years! I have been NED for 8 years, teach full time, enjoy friends and family etc. It is still very weird (What? I have stage IV cancer!!!) but despite this I embrace every normal moment I can. All the best to you

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited September 2019

    Hello and welcome Karen, yes it’s a complete roller coaster and very scary. You are totally allowed to be a bit bonkers at this stage and it’s difficult to accept. I’m a year and a half from MBC diagnosis and it’s still the last thing on my mind at night and the first thing in the morning. Harder too when you have no idea how your body will react to the drugs. Take heart that there are many of us out there who are leading pretty normal lives, albeit a ‘new normal’ - I hate that phrase, but it is true. Keeping yourself physically and mentally active is all part of helping yourself, but you may need to pace yourself a bit!

    Some of us have carried on as normal, and some of us have changed our lives or shifted priorities. I’ve just stopped work, but I was financially in a position to manage that albeit tight - I’m 54 and had always said I’d retire and do the things I’d like at 55 if I could. So not a radical change, more of a speeding up the process, or slowing down my life from a hectic high pressure job!

    You’ll find your way



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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2019

    I recently read a comment on bco, sorry can't remember thread or poster's name, where a stage IV member mentioned that some of us eat cakes and have survived for 8 years. Although this may not have been in reference to me, it could have been. I think it's perfectly ok for folks to go on restrictive diets, take a million supplements and use any alternative they wish. If that provides comfort to them and helps them feel like they are being proactive in their “fight" , good on them!

    However some of us don't go this route and that's ok. My diet is mainly plant based (as it was before bc), but if I want carbs, cakes, meat or alcohol and they give me pleasure, I have no hesitancy about indulging. Not every meal, everyday but as a treat . I am simply not a compulsive person, so following a compulsive regimen made me miserable. I did try for a few months butI am much happier when I don't have to worry about everything that passes through my lips. That being said, I have no idea if this has contributed to my 8 years of NED and I would never claim it did nor imply that others need to do the same. But even though I'm a cake eater (high quality only!) I am no less worthy of survival than those who follow rigorous diets or protocols. I do feel a certain amount of survivors guilt because many who have worked so hard to keep progression at bay have passed away, but for me, living without worry about everything I do or don't do has made my life happier. Again, has it contributed to my longevity? Darned if I know! I choose the Bobby McFerrin philosophy, don't worry, be happy and do have a piece of cake occasionally 😋.

    PS: I am sorry if this sounds a bit cavalier, but it works for me

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  • Karenfizedbo15
    Karenfizedbo15 Member Posts: 717
    edited September 2019

    Yip ...

    more power to you Exbrnexgrl!

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited September 2019

    To exbrnxgrl

    Dean Koontz "where there is cake, there is hope."

    Mary

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2019

    3-16-2011,

    I love it! It’s my new favorite quote and could have been my family motto 😉

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