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

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited September 2015

    And beautiful sunset 50sgrl !!

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited September 2015

    Hallo ladies,

    Been away for a bit and so much has happened would love to address them all but I don't think I would add any more wise words than those that have already been shared.

    I'm posting now because of the Tomaxifin topic. I just got back from my oncologist and I shrunk it another .5 cm it's getting smaller yeah! I have been on Tomaxifin for three months now SE minimal and I was told chemo would not be beneficial to me because I am HR+ . So now we shall see....I am also doing a lot of alternative therapies. So I will keep up with all of it.

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  • ChelleG
    ChelleG Member Posts: 540
    edited September 2015

    Wendy, so glad to hear from you! Hooray tamoxafin! Big celebration hug!!!!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2015

    Yes, thanks. I am aware of the limitations in tx that triple negs face. I do depend on a dx line, I guess. Maybe too much 😉

    More reflections on the normal life... If you have stage IV bc, shouldn't you be exempt from other bothersome things in life? Apparently not. Late Saturday night, I heard a loud bang that sounded like it came from my garage. I peaked in, but everything seemed fine. The next day, I was getting ready to run some errands, so I hit the garage door opener and... Nothing. I then noticed that the cable that runs around the frame was hanging loosely and worse, the giant spring had split in half. Great, my car is trapped in the garage, the emergency release doesn't work (only for power failures) and it is Sunday. After waiting over 5 hours for a repairman and spending far too much, I finally have a working garage door. Sigh... Just part of the normal life.
    On another note, I am getting my tattoo tomorrow. Very nervous, but excited. My mo gave her blessing and wished me a very happy birthday.
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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited September 2015

    Great news, Wendy! Hooray!

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited September 2015

    Awesome news Wendy!!!

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  • 50sgirl
    50sgirl Member Posts: 2,527
    edited September 2015

    Wendy- WOOHOO! I am happy to hear your good news.

    Lynn

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  • gaia0132
    gaia0132 Member Posts: 316
    edited September 2015

    that's great Wendy. Are you on heceptin as well?

    Just curious because I am er/pr positive and herz2 and I am on tamoxifen and herceptin.

    Just started a month ago.

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited September 2015

    Exbrn I know what you mean !! Sometimes when it's things like your garage door etc. I feel like really I have stage iv cancer can't I be exempt that from this kind of thing but then other times I'm thankful that it something else besides cancer that's causing some major issue lol 

    Great news Wendy !! 

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited September 2015

    Exbrn,

    I often think, isn't stage 4 enough for one person! I am with you on this one. But I guess this just reinforces- - yes life does go on, the good,the bad and the ugly!

    Best

    Nel

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited September 2015

    You folks are so awesome I want to hug all of you really really tight.....I'm a hugger😉

    Gaia morning no I'm only on Tamoxifen, what is herceptin? I was on metformin which is a diabetic drug that was believed to help Tamoxifen but I lost to much weight so I stopped it. So far stiffness in the knees are the biggest issue oh yeah and those lovely night sweats. But I figure I would have had that anyway going into menopause.

    One thing I am doing that may be somewhat controversial is marajauana oil. I feel this is having a positive impact as well. I know it is now available in the US. Three rice size drops a day it has helped with appetite and anxiety for obvious reasons and I have read that the canabanoids kill cancer cells. I know...kind of flakey but I'm so there with trying everything thing.

    Also Chaga tea or tinctures will help build white blood cell count.

    Hahaha I guess I'm now officially one of the hippies. Love and hugs to all of you.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2015
    Yes, I know that if we want to make our lives as normal as possible, we have to deal with life's normal problems. So, in the spirit of my sunny outlook...I am very impressed by how quietly my garage door opens and closes. It really was very loud and creaky sounding before the repair.
    More normal stuff... They are resurfacing the parking lot in my complex (small townhouse complex). Those of us who have garages backing up to the lot/private street will not be able to access those areas from 7:30am-6:30pm today. It is a Jewish holiday, so I have taken the day off from work.My car will remain garage bound, but my dd will pick me up on the street in a few hours and accompany me to my tattoo appointment. Not a traditional Yom Kippur observance, but no one has ever called me traditional.
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  • gaia0132
    gaia0132 Member Posts: 316
    edited September 2015

    Wendy you don't sound like a hippie at all

    I am seeking out the cannabis oil myself and Chaga is a classic. I am actually a holistic health consultant so dealing in those things is very familiar. The western mess are what's weird for me!

    Herceptin is a targeted therapy specifically for herz 2 positive people. Are you herz2?

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited September 2015

    Yup 100% 8/8

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited September 2015

    exbrnxgrl that's exciting what kind of tattoo are you getting? Post a pic maybe....

    Gaia wow that's cool holistic health consultant who am I telling this stuff to... I have just over the last couple years gotten into alternative therapy and it's been a real eye opener . I will ask my oncologist about Herceptin. Thank

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited September 2015

    Exbrn ohhh today is tattoo day !!  Pic please ! 

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2015
    Wendy,
    Congrats on your good news!
    I am getting a hamsa (hand of Miriam/Fatima) on my inner right forearm. It is a rather superstitious symbol in both Judaism and Islam and thought to protect against evil. It's often combined with the evil eye symbol, though mine will not be. I am not superstitious, but have always been drawn to this symbol. My SIL brought me a beautiful one from Israel which is hanging on my front door. I have one in my car, in my purse, a bracelet and a necklace, so it seemed a good choice for a tattoo. I will try to post a pic later.
    Caryn
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  • pearlady
    pearlady Member Posts: 882
    edited September 2015

    Laurelind5 right noww there is nothing other than chemo or radiation for triple negative.  But there are currently encouraging trials regarding Androgen Blockers.  Many women who are triple negative are said to be candidates.  I am also encouraged by these studies as down the road we Stage 1V need as many options as possible.  I had discussed this with my onc and he indicated that a bone biopsy would be required to test for it, but that sometimes they are able to use a previous bone biopsy.

    http://www.fgfinder.com/blog/fighting-triple-negative-female-breast-cancer-by-blocking-androgen-male-receptors

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  • artistatheart
    artistatheart Member Posts: 2,176
    edited September 2015

    Exbrn, I want to see the tatto also! My daughters are pushing me to get one as well so we all match. My regular life crap is that my dentist fixed a cavity with a small filling a few months ago and now it has been sensitive to cold and aching and looks like I might need a root canall!!! I start my second round of Ibrance today so WBC could be an issue among other SE's. Crud.....

    Wendy, my son who is very into alternative RX as been encouraging me to try cannibas oil as well. I keep slowly losing weight myself although I feel like I am eating enough?? I can keep my anxiety in check most of the time. But then suddenly, I don't know what triggers it exactly, but I can have a 15 minute meltdown of fear and doubt. Then it is over for 4-5 days. My poor DH takes the brunt most of the time. Does the oil make you feel high in any way because I could not handle that. Where do you get the tea?

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  • ChelleG
    ChelleG Member Posts: 540
    edited September 2015

    Wendy, I ironically got some drops as a gift from my son pin law last week. Easily obtainable as I live in Colorado. I haven't tried them yet, but now will! My husband is Denver PD. Even he is encouraging me to give it a try. I don't know a thing about alternative meds. Any other useful tips

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  • Lauralind5
    Lauralind5 Member Posts: 220
    edited September 2015

    I would try it if it were easily obtainable for me !

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  • Northtexas
    Northtexas Member Posts: 67
    edited September 2015

    Ladies, I feel I must chime in on cannibus. I bought some edibles while in Colorado over the summer. I took a gummy one day at about 4 p.m.  I was very high for about 6 hrs. 

    Next day I had my monthly appointment for blood work, Dr visit, and Faslodex/xgeva injections. My MO called me at 5:30 pm to tell me my liver blood work came back at 365. Normal is about 40. It took about 6 weeks to get back to normal. 

    Just a word of warning.  

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  • gaia0132
    gaia0132 Member Posts: 316
    edited September 2015


    I know my MO will have zero issue writing me a script for medical cannibis when it becomes legal in NY. I believe medical grade is very different than recreational edibles.

    Anyone in Colorado, or a legal state, should check out Mary's Medicinals- they mainly do patches and some ingestibles and they are really geared to therapeutic use.

    Cannibis oil is a whole other animal from all these things. This oil is specifically purported to beat down cancer. Now I have lived my whole life in the alt world and had I not come out at ST 4, I might have given it a try as a sole remedy- but at this stage I am ok with complementing my care. Maybe once I am NED I would take a break from traditional tx and do the oil protocol on it's own.

    Those are just my musings, hopeful ones, especially the NED part....


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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2015

    In CA, medical cannabis is legal. When I was first dx'ed, the social worker at my mo's office offered to give me a prescription. I declined at the time , but would not hesitate to use it if and when I feel it's beneficial.

    Back from the tattoo studio. Pics to come as it's currently wrapped, but I love it! Pain? After 2 natural childbirths, a double mastectomy, port surgery, a collapsed lung and 3 chest tube insertions, this was nothing! It felt like someone was giving me an intense rug burn. I was easily about to chat, laugh and joke through the whole thing, which took about an hour and a half

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2015

    Here it is! I can't stop staring at it. My tattoo artist was able to capture what I had in mind perfectly.

    image

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  • annieoakley
    annieoakley Member Posts: 870
    edited September 2015

    Caryn that looks awesome, is that a hamsa? I think it's the symbol to ward off evil. It's very well done. Both of my daughters have quite a few tattoos. 

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  • KiwiCatMom
    KiwiCatMom Member Posts: 2,553
    edited September 2015

    Beautiful, Caryn! Wowsa!

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited September 2015

    Awesome tatoo!

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  • Texasrose53
    Texasrose53 Member Posts: 354
    edited September 2015

    Awesome tattoo Caryn!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited September 2015

    Yes, it is a hamsa. Jews call it the hand of Miriam. It was not part of the Ashkenazic tradition but more popular with Sephardic Jews. However, since Isreal has a large Sephardic population, it has now become a more common symbol with all Jews. I have always loved the symbol and have one in my car, front door and some jewelry too. Yes, it protects against the evil eye. In Yiddish the phrase "keyn ahura", means without the evil eye and is heard quite often. Muslims call it the hand of Fatima, but the meaning is the same. The origins are clearly Middle Eastern and probably pre-date Judaism and Islam.

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