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Stage 2 Sisters Club

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  • GoKale4320
    GoKale4320 Member Posts: 580
    edited October 2019
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    Hello, everyone. Insomnia is discussed frequently so I thought I would share this idea. It's passionflower tea, and I sometimes have a cup in the evening. I try to drink it towards bedtime, but early enough so that I don't have to wake in the night to urinate. Check the ingredients to make sure they do not interfere with anything else you are taking.


    https://www.iherb.com/pr/Traditional-Medicinals-Relaxation-Teas-Organic-Nighty-Night-Naturally-Caffeine-Free-Herbal-Tea-16-Wrapped-Tea-Bags-85-oz-24-g/6802?gclid=EAIaIQobChMIjrT08cGh5QIVTuDICh0RrQFAEAQYASABEgJ78PD_BwE&gclsrc=aw.ds


    Traditional Medicinals, Relaxation Teas, Organic Nighty Night, Naturally Caffeine Free Herbal Tea, 16 Wrapped Tea Bags, .85 oz (24 g)

  • MexicoHeather
    MexicoHeather Member Posts: 147
    edited October 2019
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    they make a good lemon balm, too. I will give it a try.

  • ruthbru
    ruthbru Member Posts: 47,134
    edited October 2019
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    Thanks! I will look for it!

  • runor
    runor Member Posts: 1,613
    edited October 2019
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    Trying to keep my head above the water and not let the waves of depression / panic close over me, but I think I'm losing the battle. Was supposed to have my annual mamm in September. Began trying to not think about it in August. Tried not to think, the mamm is coming, the mamm is coming. Used to be I had a mamm and walked out knowing that cancer happened to other people. Well that happy little bubble of delusion has burst. I do not feel safe. Because I am not safe. That is the truth. So I anticipated all August the mamm that was supposed to happen in September and all September passed without the phone call telling me when to come in. I phoned my doc about a week into October and said, basically, what the hell?! Oh, yup, he'll put a rush on that mamm. Here I am. Still waiting. Still trying NOT to anticipate that my life as I know it hangs on a thin, thin thread and that stinking mamm can tip me off my precarious perch. This state of clenched dread has now gone on for too long and I'm getting really grumpy, somewhat snappy, not sleeping anymore and daily feeling more and more desperate and yes, terrified. All those statistics start playing in my head like a nursery rhyme I can't shake, "radial scars have a 50% increased risk of breast cancer in the opposite breast..." Shit. I just had to say this. I am not keeping my shit together very well. I need to take my own damn advice but having a tough time of it just now. The mental noise that never quits. Tinnitus of the soul

  • hikinglady
    hikinglady Member Posts: 625
    edited October 2019
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    runor What a very complete, candid and familiar description you have written. You've perfectly described the noise in our heads; that tinnitus of anxiety.

    They should NOT have dropped the ball on your follow-up diagnostic screening. YIKES. I feel for you. I have lived through the worries that you describe.

    It's not a gentle reality, living side by side with anxiety.

    Based on what you're describing, I do think you should ask your PCP about how to get some help with the anxiety. Perhaps anti-anxiety meds? Anti-depressants? At least open the discussion?

    The usual Healthy Choices menu is always out there for us to maintain good mental health: exercise, good nutrition, fill our days with good stuff to crowd out the inner fear and sad stuff, give, do, be engaged, etc..... However, if you're really being ruled by the inner voice of anxiety and fear, maybe there's some medical Rx help possible?

    I have some dear and very close people in my life who suffer from debilitating anxiety and depression. The medications help balance things out for better functioning for them. With those meds, life has its colors back, and the dark tunnel recedes.

    The truth is, we've all been put through a shell-shocking, traumatizing experience with this diagnosis, and it costs us in all kinds of ways. Our mental health is not something that our oncologists usually check on, so we have to watch out for it ourselves.

    Keep us posted.

  • ruthbru
    ruthbru Member Posts: 47,134
    edited October 2019
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    Runor, take HikingLady's advice and talk to your doctor about your anxiety. BC is an shattering diagnosis and it would be surprising if a person did NOT have any post-traumatic stress issues!!! We need to be proactive about our mental health as much as our physical well-being. Medications and/or counseling can be a godsend in helping you get a better handle on things. (Just a note, a mammogram delayed by a month or two is not going to make any difference in the long run. You should be proud of yourself for catching the mistake!)

    As far as self-help goes; make a serious commitment to exercise, it is the #1 non-medical thing you can do to reduce your chance of recurrence. If you take a class and/or find a friend to workout with, it can actually be fun! Go on a shopping spree, update your wardrobe, try a new haircut/color; if you look good, you do feel better! Try some things you've always wanted to do but never took the time; join a Book Club or a choir, take cooking lessons or Spanish lessons or Tango lessons, or whatever! Plan a fun vacation with family or friends. Get a pet or volunteer at an animal shelter. If you are doing things that are interesting and engaging, you don't have as much time to sit around and think (plus you are tired at night so you will have a better chance to sleep). If this sounds like a pep talk, it is. When I was about as far out as you are now; I decided that since I had done, and was doing, everything I personally could do to prevent a recurrence; then either it was going to reoccur or it wasn't. If it didn't come back, I was wasting a lot of time worrying about nothing; and if (heaven forbid) it did, then I decided that I really better be getting out there and live while I could (which is actually what everyone should be doing, cancer or not).

  • runor
    runor Member Posts: 1,613
    edited October 2019
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    HikingLady and Ruthbru, thank you both for your wise and thoughtful words. I normally function fairly well (it took about two years to even feel like it was safe to come out of my shell). But jeez louise, what's with the late stinking mamm? I hear often that life is the space between tests and scans. No kidding. More than once I"ve fallen through a crack in the system. Crack, hell, more like the hole at the top of a volcano, and had to get on the horn and ask someone what the bloody problem was. It really irks me that I have to be on guard against the Medical Machine where, apparently, no one is in charge. My anxiety will peak when, after having my boobs squished and zapped and I'm sitting in the waiting room in those UNFLATTERING taupe robes that were coloured to hide vomit and poop stains. (really, who in their right mind makes fabric in that vile, insipid colour that flatters no one?) Until someone walks out and says, okay, you may go home now...that is the very edge of anxiety and panic. Hoping no one walks out and asks me to come back in for a second set of pictures. Because we know what that means. Yes we do. And it ain't good. So the Go Home, we'll see you next year...THAT is when all that terror and tension just whooshes out and I fly around the waiting room like a balloon let loose, phew, phew, phew in crazy circles. Thank you Jesus, or Yoda or whoever.

    As to shopping, god, I'd rather have my eyes gouged out. But I do combine exercise with pets as I am currently looking after a horse (was three horses) so every day I hike out in gumboots and floppy pants, work gloves, wallow around in the muck flinging horse shit into a wheelbarrow. A horse poops about 12 times a day. About 10 pounds a pile. I move, on average, 120 pounds of shit every day. (with three horses that was close to 360 pounds. I had to shovel 3 times a day to stay on top of the mess) Shovel it up, wheel it uphill to a pile and dump it. This is the best workout a person could have. I also involve dog ownership in the action as between heaving the wheelbarrow upside down to empty it I shout, "Quit eating shit you stupid dog!" I am out in the fresh air and sunshine or rain, up and down a hill, shoving a load that averages 60 to 70 pounds at a time. If it's raining it takes longer and the load is heavier. And the dog is both muddy AND shitty. Oh the glamour of my life. Then I feed and water chickens which involves carrying a bucket of feed and a bucket of water as I yell at the dog, "Quit chasing the damn chickens you stupid dog!" It occurs to me that yelling is a good workout! Hugs to all.


  • hikinglady
    hikinglady Member Posts: 625
    edited October 2019
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    runor You totally have exercise covered in your life! Lots of people think that they 'shovel sh---' metaphorically while doing difficult desk jobs, but you literally do it! Sounds like a beautiful, rural life. Keep us posted after the mammogram. I'm all in favor of therapeutic yelling. I do plenty of silent inner screaming. Where I live, any louder would frighten the neighbors....

  • ruthbru
    ruthbru Member Posts: 47,134
    edited October 2019
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    Yikes, you can cross off my exercise advice!!! But I still stand by my going out and doing something fun suggestions! Happy

    It took me years and years before I didn't burst into tears after an 'all clear' mammo or 'everything looks fine' checkup. Now I am back to a 'let's get this over with' attitude; which is a vast improvement (and one that only comes with time).

  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited October 2019
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    Runor: I had to laugh when you talked about yelling at your dog to quit eating sh**. I have three toy poodles and they love to eat each others. In fact the male dog will try to eat it as it's coming out the end of the other dog. Then, of course afterwards, they want to lick my face. Well, no thanks to that. I feel your pain. I use to go to mamos and wonder what all the fuss was about. Not anymore. I don't know if the anxiety of the test will ever go away. I've learned to accept that there's going to be anxiety going forward. It's still early days for us in our recovery. It's a new normal which has its good points and its bad points. For sure I know I have to be on top of the medical profession at all times. I had a similar experience this spring with my mamo. I didn't get a call to say when it was scheduled. When I called they said there had been no requisition put through. Family doctor had faxed the requisition to the wrong phone number but no one followed-up to see if it had been scheduled. Now, I know, that's one more thing I have to make sure gets done each year. Hang in there girl. It will get easier. Sounds like you're going through an angry stage. That's good. Let it out. Once it's done then you can move on.

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited November 2019
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    3 years anniversary today! 💪

  • mariadelpilar
    mariadelpilar Member Posts: 37
    edited February 2020
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    count me in too! So glad to hear about others’ experiences.

  • mariadelpilar
    mariadelpilar Member Posts: 37
    edited February 2020
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    I have started listening to you tube meditations on healing when I go to bed. The music is super relaxing. I find myself asleep before the meditation is over.

    The deep breathing helps me a lot.

  • nonomimi5
    nonomimi5 Member Posts: 184
    edited February 2020
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    Hi Stage 2 sisters - Can someone explain to me what is the difference between the stage and the grade? I was diagnosed at Stage 1 before but became Stage 2 after the surgery. I am assuming because it was bigger than they first predicted. Was does the grade represent

  • mariadelpilar
    mariadelpilar Member Posts: 37
    edited February 2020
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    the grade refers to the tumor aggressiveness and how the cells are multiplying. Grade 1, 2 and 3. Grade 2 is moderately differentiated. Multiplies a little faster than grade one but not as fast as grade 3.

    That’s how I understand it!

  • hikinglady
    hikinglady Member Posts: 625
    edited February 2020
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    nonomimi5 Hopefully your MO can explain your post-surgical pathology report carefully to you, because there's a lot to absorb, for sure....

    Histologic "grade" is used to describe what the cancer cells look like using a microscope. Most cancers are graded by how much they look like normal cells. Low grade or grade I tumors are well-differentiated. This means that the tumor cells are organized and look more like normal tissue. High grade or grade III tumor cells are poorly differentiated. This means that the tumor cells don't look like normal cells. They're disorganized under the microscope and tend to grow and spread faster than grade I tumors. Cancer cells that do not look well-differentiated or poorly differentiated are called moderately differentiated, or grade II. (URMC Rochester-link below)

    https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=85&contentid=p00554

    Then, there's a further bit of information, called the proliferation rate, which is how fast the cells are reproducing or going through their life cycles.

    https://www.breastcancer.org/symptoms/diagnosis/rate_grade

    The stage can change after surgery (and the post surgical stage is the official one that counts), because of the size, location, shape of tumor, whether there's any vascularization or lymphatic organization near the tumor, and whether there's axillary node involvement. So, the pre-surgical staging is a guess, and then they refine it after the post-surgical path report. The staging guidelines have changed a bit over time, and they're usually established (in the US) by the NCCN (National Comprehensive Cancer Network).

  • nonomimi5
    nonomimi5 Member Posts: 184
    edited February 2020
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    Maria and Hikinglady - Thank you very much.

    I am usually exhausted and fall asleep easily. But I wake up in the middle of the night so to go back to sleep, I tell Alexa to read my audio book and I fall asleep

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited March 2020
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    I recently had a bone density scan done, and today my primary care doctor emailed me. She didn’t have a numerical result, but she said I have osteoporosis. She is recommending a drug for it. Has anyone taken one of these:

    Evista

    Prolia

    Zometa

    How did you tolerate it? Any side effects?

    I see the MO on April 16th. So will probably discuss it with him, too. Evista is supposed to have some benefits for breast cancer survivors so I might lean towards that.

    Thanks for any thoughts about this.



  • GoKale4320
    GoKale4320 Member Posts: 580
    edited March 2020
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    I recently had a bone density scan done, and today my primary care doctor emailed me. She didn't have a numerical result, but she said I have osteoporosis. She is recommending a drug for it. Has anyone taken one of these:

    Evista

    Prolia

    Zometa

    How did you tolerate it? Any side effects?

    I see the MO on April 16th. So will probably discuss it with him, too. Evista is supposed to have some benefits for breast cancer survivors so I might lean towards that.

    Thanks for any thoughts about this.



  • hikinglady
    hikinglady Member Posts: 625
    edited March 2020
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    GoKale4320 Are you on an AI? That often does cause bone density to drop. I had osteopenia diagnosed before starting my AI, so I've been on Zometa now since 12/2018. It causes me no problems. I feel tired and slightly icky the day after each infusion, but that's it. I have the infusions every 6 months.

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited March 2020
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    Hiking Lady - thank you for your thoughts on Zometa. I am glad to know that you can take this without too much trouble. I think Evista and Zometa are covered by my insurance.

    I am not taking an AI or Tamoxifen. I have a family history of osteoporosis and I have a short and slight frame so I fit the profile. With chemo, I think the osteoporosis started early; I am almost 52 (on Saturday).


  • bravepoint
    bravepoint Member Posts: 232
    edited March 2020
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    GoKate4320 - I just finished 3 years of Zometa infusions every 6 months so 6 treatments all together. I felt horrible after the first one, so achy and sore I could hardly move. It got better with Tylenol and a day later I was fine. The other 5 had no affect on me at all.

  • chaclarey
    chaclarey Member Posts: 62
    edited March 2020
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    Hello GoCale4320,

    I was diagnosed with osteoporosis in January 2020 after a dexa bone scan that was supposed to be baseline lol. I also have small frame but I was totally surprised by diagnosis. I am 51. I had zometa infusion on March 9th with little side effects. Just a headache and slight nauseous for a day.

  • nonomimi5
    nonomimi5 Member Posts: 184
    edited March 2020
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    GoKale - Happy Birthday

  • legomaster225
    legomaster225 Member Posts: 356
    edited March 2020
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    I am getting Reclast. I believe it is the same medication as in Zometa but a different concentration and I only get it once a year. The infusion is no big deal and my only side effects were a slight headache and feeling a bit tired the first day. I know the meds are tough on the kidneys so in addition to drinking extra water my MO has me get a bag of fluid before and after the infusion. I don't go back for a bone scan until next year (every two years I guess) so we will see if it helps. Other than that he recommends weight bearing exercise, calcium, Vitamin D and Magnesium to strengthen my bones.

  • GoKale4320
    GoKale4320 Member Posts: 580
    edited March 2020
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    Since I turned down Tamoxifen post-treatment in 2017, I decided to take Evista because it is also a SERM, similar to Tamoxifen. Later, I can see about adding Zometa or Prolia ( Prolia is not covered by my insurance). So I hope I will get two benefits (bone protection and lower recurrence risk) with Evista.

    I looked at NutritionFacts.org for more info on osteoporosis treatment with nutrition. Apparently, prunes protect existing bone and almonds help build bone. Legumes are also good. I will try to incorporate these on a regular basis.

    This morning, I took my first dose of Evista. I will update again in a few weeks to let you know how it’s going.




  • opt4life
    opt4life Member Posts: 111
    edited March 2020
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    Happy Tuesday all, just checking in (after a long while) to see what advice you guys had for bone degenerative disease—especially in the back. My latest scans compared to ones did 2 years ago show my back and bones aren’t getting stronger. I have arthiritis in knees and feet too plus plantar fasciatis. A complete mess but frankly the only thing I am looking for on my scan results is ‘no evidence of disease’ so I’ll take that great news with the not so great news that my bones are barely holding me up.

    I currently get Faslodex injections so any thoughts as to what I need to request from MO to help with bone deterioration would be appreciated.

    Hope you all are staying safe and well!

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited November 2020
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    HI, stage 2 sisters, I have been on hormonal therapy (Lupron and Aromasin) for almost 4 years. I just realized my onc had ordered BCI test for me to determine my late recurrence rate and my benefit of taking hormonal therapy for 5 extra years. I will need to pay at least $1000 out of pocket for the test.

    I actually don't want to get the test, I think my young age and one positive node automatically put me on high risk of having late recurrence. I really want to stay on Lupron and Aromasin for at least 10 years or just as long as I can tolerate them fine. I am curious to know the results but I think end up it's all about luck.

    Anyone here had declined BCI test and opted for 10 years of hormonal therapy? What's your experience?

    Thanks!

  • peregrinelady
    peregrinelady Member Posts: 416
    edited November 2020
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    Steph, this thread is fairly inactive. You may want to post in the several BCI threads that may be more recent. I understand your reasoning, but you may want to go with the BCI just to have more information. I had similar stats to you (although early 50’s at diagnosis) with the same size tumor and ER, PR percentages. My BCI came back high risk, high benefit, but if I didn’t have to continue with these drugs, I would stop in a heartbeat. For me, as time goes on, more side effects appear. Also, my insurance covered all of the cost, but I have heard that the company will work with you if insurance doesn’t pay.
  • ruthbru
    ruthbru Member Posts: 47,134
    edited November 2020
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    I would get the test. AIs are (in my doctor's words) "serious drugs" with potential consequences of their own. If you find you have a high benefit, then, of course, you should stay on them. If you find they are of a low benefit, at least you will be able make informed decisions (for instance, if the SE got too much, you could maybe go seven years instead of ten, or go off them after 5 years without as much fear). I think it is always better to have all the facts.