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

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  • micmel
    micmel Member Posts: 10,060
    edited July 2019

    I am very glad you are okay. Things like that can be very scary. Rest up and drink water water. So glad you have such wonderful daughters. Stay well!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited July 2019

    Thanks, ladies! I also had a good dose of Zofran infused through my port and was given some Zofran tablets to take home. I was a bit queasy both last night and this morning but the Zofran kept it from getting worse. Unfortunately, headaches are an se of Zofran, but I’d rather have a headache than nausea. I am eating very lightly, drinking fluids and definitely feel as if I’m on the upswing. It’s late afternoon here and I’m feeling a bit tired. After a good nights rest, I hope to be somewhat back to normal tomorrow

  • olma61
    olma61 Member Posts: 1,026
    edited July 2019

    Feel better soon, exbrnxgrl!

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited July 2019

    feel better my friend!!! That sounds like a bummer of a stomach bug!! I’m so glad you the zofran

  • edwards750
    edwards750 Member Posts: 1,568
    edited July 2019

    I hope the caption is true because my sister’s BC just metastasized to her stomach. She is having 4 rounds of chemo. Completed 2. Tuesday the doctors are going to check and see if the chemo is working.

    Background on my sister’s BC- she developed ILC in 2012. She had a MX and took Arimidex. She had the Oncotype test but the results were Ian intermediate score. 4 years later it came back to her MX scar. She had radiation and got 2 shots a month. Last month she started having back pain. Pretty severe nothing worked to relieve the constant pain. MO finally did test and found the cancer in her stomach. Prognosis is grim. MO said they couldn’t cure it but they could treat it.

    Needless to say the family is devastated. I was DX a year before her and am 8 years out next month. I had IDC Stage 1, Grade 1. I had a lumpectomy, 33 radiation treatments and Tamoxifen. My Oncotype score was 11 which allowed me to dodge chemo, Our mother had BC. She has passed away but not from BC.

    I’m storming the heavens with prayers and trying to stay positive but it’s hard. She lives in another state which makes it even more difficult. I hope you ladies are right about it not being the end. We are all just heartbroken.

    Diane

  • edwards750
    edwards750 Member Posts: 1,568
    edited July 2019

    I hope the caption is true because my sister’s BC just metastasized to her stomach. She is having 4 rounds of chemo. Completed 2. Tuesday the doctors are going to check and see if the chemo is working.

    Background on my sister’s BC- she developed ILC in 2012. She had a MX and took Arimidex. She had the Oncotype test but the results were Ian intermediate score. 4 years later it came back to her MX scar. She had radiation and got 2 shots a month. Last month she started having back pain. Pretty severe nothing worked to relieve the constant pain. MO finally did test and found the cancer in her stomach. Prognosis is grim. MO said they couldn’t cure it but they could treat it.

    Needless to say the family is devastated. I was DX a year before her and am 8 years out next month. I had IDC Stage 1, Grade 1. I had a lumpectomy, 33 radiation treatments and Tamoxifen. My Oncotype score was 11 which allowed me to dodge chemo, Our mother had BC. She has passed away but not from BC.

    I’m storming the heavens with prayers and trying to stay positive but it’s hard. She lives in another state which makes it even more difficult. I hope you ladies are right about it not being the end. We are all just heartbroken.

    Diane

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited July 2019

    Thank you again for all your good wishes. I am happy to report that am eating lightly, very lightly, and keeping it down. While I was waiting for my to take me to the ER, I took out a Sharpie and wrote , NO BP OR NEEDLES, on my left arm due to my low level lymphedema. All the nurses and aides thought this was a great idea! So, if you’re a lymphedema risk keep a Sharpie handy 😉.

    Edwards, so very sorry to hear about your sister’s dx. This must be difficult for you and your family. Your post seems to be referencing something about a caption, on a previous post perhaps, but am not sure what you’re referring to.

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited July 2019

    I think Edwards is referencing the title of this page “Life does not end with a stage IV Diagnosis (really!).

    Glad things are looking up for you Exbrnxgirl. And thanks for updating how you’re doing.

    Edwards, sorry to hear about your sister’s diagnosis. I hope someone with knowledge of stomach cancer will respond to you too. I would want as much info from the MO as possible. Maybe the prognosis being “grim” is as far as he/she wants to go right now.


  • gussy
    gussy Member Posts: 77
    edited July 2019

    Stay on disability. You don't need the stress.

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited July 2019

    LOL, and thank you Rosie! Since I titled this thread, you'd think I'd get the reference.

    I've not thrown up for about 24 hours and managed to hold down a piece of toast, some applesauce and Jello. That's the most I've eaten since Tuesday!

  • Bliss58
    Bliss58 Member Posts: 938
    edited July 2019

    Exbrnxgrl, scary visit to the ER, but glad to hear you're on the mend. Hopefully this will completely resolve for you soon.

    Edwards, very sorry to hear of your sister's BC metastasis to the stomach; that's rough. I have no advice to offer, but I wish her the best and hope the treatment plan will work to knock back that cancer. Hugs.

  • sandibeach57
    sandibeach57 Member Posts: 1,387
    edited July 2019

    Heading to Southwest VA for a camping trip. Going to see a play at Barter Theatre, which I should have added to Illimae's Bucket List thread!

    image

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited July 2019

    NICE Sandi

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited July 2019

    how’re you doing now Caryn

  • gailmary
    gailmary Member Posts: 543
    edited July 2019

    Diane,

    I am sorry to hear of your sisters progression. Is the grim prognosis what the dr said or are those your words cause the dr said they can't cure it but only treat it? I know nothing of cancer metastasized to the stomach so i can only wish her well.

    I do know I find lots of reason to expect the best when I read all the messages of hope posted on these pages. Doctors always say they cant cure it but they can treat it. They mean they look at it more often as a manageable disease like diabetes and not a death sentence. I hope this helps.

    GAILMARY

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited July 2019

    Help! The men in my family are driving me mad! Dad now 77 is difficult and always has been a selfish man. Expects me to sort Everything out for him since my Mum died 3 yrs ago. My Husband is there and supportive but stressed to the max so he’s not really coping with all the stuff . Brother, much tho I love him, lives in La La land..., lots of promises and nothing gets done. They all seem to think my diagnosis isn’t really happening, especially as I’m currently doing well, although they all fully know the stage 4 incurable thing.

    Wonder if this just me stressing about my own stuff lifespan wise.. should I be more relaxed or kicking ass!

  • Lita57
    Lita57 Member Posts: 2,338
    edited July 2019

    Yeah, Karen, sometimes I wonder if THEY think we're making all this stuff up.

    I try to live as "normal" a life as I can, folding clothes, cooking a meal for them, etc., but I'm not sure if all that is self-defeating. I'm trying to relinquish some of the burden. My time, I realize, is now being measured in "months," not years, and they're going to have to deal with it all after i'm gone, which will now be sooner than we think.

    L


  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited July 2019

    Aawww Lita, I noticed you’d been making references to time running out. I do hope you have the support you deserve and the decisions and choices about how you spend your time are yours

  • janky
    janky Member Posts: 478
    edited July 2019

    Lita - I have followed your thread for a long time now and share karenfize.. thoughts. This is such a tough battle, road, whichever way anyone wants to think of MBC. and I wish you well and pray that whatever YOU decide as the next step, that you are supported by those you love! Keep your amazing sense of balance and continue to enjoy all those moments!

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited July 2019

    janky,

    👍👍👍

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,318
    edited August 2019

    I had a routine visit my mo yesterday and received very bad news. No, I am still doing well but... my mo is taking a one year leave of absence! She is returning to her native country to help care for her elderly parents. Her husband is nearing retirement and his aging parents live in the same country as well. She said that after her LOA, if the situation with her parents has not improved, she will need to resign . Argh! I know she has to put her family first, but she has been such a great mo. We discussed three possible mo’s to replace her and all I could say was, “Which one is most like you?”

  • Bliss58
    Bliss58 Member Posts: 938
    edited August 2019

    Oh no, Caryn, that is a jolt. We rely so much on the relationship with a great MO and it's hard to think of changing. That's been a fear of mine. On the flip side, I'm glad to hear you are still doing well. Cheers to a great weekend!

  • nbnotes
    nbnotes Member Posts: 338
    edited August 2019

    Sorry to hear that Caryn! That is such a hard thing to deal with when you really like your current doctor.

    Wanted to share a little "living" that I've been doing this week. This pic is at the top of Mount Pilatus near Lucerne,Switzerland. Had to ride cable cars for 35 minutes to get there, and take a really steep cogwheel railway to get back down....but being in the Alps with that view was worth every bit of it. I've had progressions twice in the last year, so in June I decided to just go for it .....getting scanned 8/12 so figured might as well "live" a little before then just in case I have to go to a more restrictive treatment.

    image

  • movingsoccermom
    movingsoccermom Member Posts: 164
    edited August 2019

    Beautiful picture!!! So happy you were able to enjoy Switzerland, one of my favorite places.

  • Bliss58
    Bliss58 Member Posts: 938
    edited August 2019

    Nancy, good for you going for it! My father's family is from Switzerland, but I've never been. On my Living List! Beautiful photo of you and the scenery. Fingers crossed for your scans on 8/12 and no more progression. I'll have scans on 8/15.

  • chicagoan
    chicagoan Member Posts: 1,087
    edited August 2019

    Caryn,

    That's a bummer. I have a MO I love and would not like to switch to anyone else but of course they have lives too.

    Bliss-I am copying your "Living List"-sounds much better. Always worry what will happen if I complete a "bucket list."

    Enjoy the weekend everyone!

  • nbnotes
    nbnotes Member Posts: 338
    edited August 2019

    Bliss - Fingers crossed that you have good scan results as well!

  • Lily55
    Lily55 Member Posts: 1,748
    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......

  • Lita57
    Lita57 Member Posts: 2,338
    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.


  • ucfknights
    ucfknights Member Posts: 91
    edited August 2019

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