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Anyone on AIs when recurrance happened?

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  • marijen
    marijen Member Posts: 2,181
    edited July 2017
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    OK. I can cut it up to start. I should have asked if you have a particular brand you like

  • specialk
    specialk Member Posts: 9,233
    edited July 2017
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    marijen - no particular brand, but Nature Made does have the USP certrification.

  • overjoyed4life
    overjoyed4life Member Posts: 92
    edited July 2017
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    Greetings Everyone,

    I went through a few before deciding on aromasin way back in 2012 and have been on it since then. It gave me the least side effects. I'm not angry being diagnosed a couple of weeks ago with spinal metastases . I must say, it was a good run considering I was stage IIIC at the time of my original Dx. What I am surprised about is the dramatic decline of my health. I was in pretty good shape. I traveled and was was doing fine other than some back pain over the last couple of months. Now, I feel like my spine is about to collapse with a lot of weakness in my legs. I also have a shooting pain from the back of my neck to the top of my skull. Sometimes it feels like my head is about to explode. I can't even bend over without pain. I've been prescribed pain meds, with some relief. I am going to get a cane, I surely don't want to take a fall at the point. I'm going to look into the cannabis oils to rub on my spine. It can't hurt at this point. I will never give up the fight.

    Blessing to All

  • Momine
    Momine Member Posts: 2,845
    edited July 2017
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    On femara, still no recurrence, at least not that I know of. My PT, who treated me 5 years ago, urged me to stay on the AI past the 5 years. Completely anecdotally, she reported having several patients, with ILC, who relapsed after discontinuing the AI.

    Overjoyed, bugger it all, so sorry to hear of your progression.

  • Houston2016
    Houston2016 Member Posts: 248
    edited July 2017
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    Momine, I'm curious was there particular reason why your OC gave Femara and not Anastrozole?

    Reading all your posts scare me a little because my OC did not want to do blood work, CT scan after my treatment is done back in Jan. 31, 17. She said its symptom driven. OK so what if I have no symptoms? I can go on with Mets and not knowing it? So please let me know what is the standard of practice to monitor a recurrence I don't want to wait to have a symptom. Thank You Everyone.

  • Racy
    Racy Member Posts: 974
    edited July 2017
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    Houston, in my experience the standard of care after completing treatment includes annual breast imaging and six monthly checkups with BS and Onc for five plus years plus GP visits for any other medical issues or new symptoms. This schedule means I see some type of doc at least every three months. My onc always does physical check of lymph nodes, breasts, lungs and liver. I have had various symptoms arise over years eg cough and others and my doctors prescribe scans then because of my history, as precaution. I also have annual blood tests as part of general health checkup.

    I think the keys are to maintain your schedule of checkups with all four docs, listen to your body and report any new symptoms.

  • kira1234
    kira1234 Member Posts: 754
    edited July 2017
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    Racy I've only seen my breast surgeon for the first year.

    Oncologist I saw every 3 months for the first 3 years every 6 months from then on till off meds. After that yearly.

  • Artista928
    Artista928 Member Posts: 1,458
    edited July 2017
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    How frequently you see your team depends on how of a risk you are perceived to be, at least where I go. Since I'm viewed as high risk I'm on the to be seen every 3 mo by my onc for min of 5 years, then will be every 6 mo for a period of time then annually for life. BS 2 x a year for 5 years (he's my mammo since I had bmx), then annually for life. PCP has me on an every 4 mo schedule so far (nothing set in stone with her but watches my cholesterol, bp, labs, liver enzymes and my lower abdominal pain most likely due to angry fibroids), will become annually at minimum at some point. PS once I'm all done with recon (going to do one more sx for symmetry soon) it will be annually to check on implants for life.

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2017
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    Hi Everyone, I currently on Anastrozol, same stiffness on toes and fingers every morning. I had UMX back in 11/16, had rads till 01/17. I'm currently have TE in my left breast had it filled three times, then it feels tight so I went back to deflate on 08/08. Soon afterwards, I feel some tingling sensation on TE running into bra strap area. I took antibiotic for 3 days then fourth day, the incision area kind of darkened, there soreness that goes off and on the left side above my rib cage the lymph nodes area under the arm also slightly darkened. Could this be a recurrence or the TE is leaking? Thanks all.

  • katcar0001
    katcar0001 Member Posts: 321
    edited August 2017
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    Houston, While it does not sound like the typical signs of a recurrence to me, the darkened area is concerning... may be a potential infection. I think there are more risks with TEs after radiation. Can you get in to see your doctor?

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2017
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    Thanks Katcar, yes, I called the Dr. Who's not available, so I have to call his office Monday. Has anyone had TE leaked or infection? After the deflate part of the skin on my chest is tender to touch, unlike prior to deflate. I also noticed some pressure on the chest feels like you ate something that did not digest well. It's strange.

  • Artista928
    Artista928 Member Posts: 1,458
    edited August 2017
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    I had my TEs put in at the same time as my bmx. A few weeks later my non cancer TE got infected. PS put me on oral abx and it didn't work. Went in the hospital for IV abx and then home where I did it myself with a picc line and it cleared. Definitely let your PS know tomorrow. Something's up that they need to address asap. Best wishes.

  • katcar0001
    katcar0001 Member Posts: 321
    edited August 2017
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    Houston -- Let us know how you go with the doctor. I hope it's minor and clears up quickly.

  • KBeee
    KBeee Member Posts: 695
    edited August 2017
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    I agree with the others. Be seen asap. Do not wait until Monday

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2017
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    Hi Everyone, I went to see my PS past Monday but ended up seeing another PS, who takes a quick look and said no leaking, no infection. He said the tingling I feel is the contracted muscle after the deflating August 8. So since then the symptoms kinda went away. Thank Goodness.





  • katcar0001
    katcar0001 Member Posts: 321
    edited August 2017
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    Very good news!

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2017
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    Hi Everyone, does anyone knows what other symptoms does lung Mets have besides coughing? I have been sneezing plus small dry cough here and there since probably July. Then I had the problem with the TE deflate which I posted earlier, when I feel like something blocking my chest. I kinda attribute the coughing to weather and my low immune system. That's another question I have. My last RO did blood work in March upon f/u and my WBC was 3.+.Since then, my OC refused to do another blood work like CBC when I met with her in July. If there's no blood work, how can we monitor any recurrence, especially like liver enzymes. Does anyone have the same issue? Does anyone still have low WBC months after treatment? Thanks.

  • Sara536
    Sara536 Member Posts: 5,937
    edited August 2017
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    What about asking your PCP for the blood work? I would think that your PCP would have an interest in not having you fall between the cracks. I argued against getting it done last visit with my PCP because my endocrinologist had just ordered it the week before. Her office insisted on doing it anyway and the numbers were the same. My insurance paid without blinking an eye. One doctor is with a large university system and the other with Sutter Health but they can both access all my records on EPIC "MyChart". It seems to me that you have enough going on to warrant more frequent testing


  • Artista928
    Artista928 Member Posts: 1,458
    edited August 2017
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    Pcp should do the labs that the onc doesn't do that should be done. I doubt with a bc dx that they'd say no. They are the ones who are the catch all, do the things that other docs aren't doing that is relevant.

  • bevin
    bevin Member Posts: 519
    edited August 2017
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    I think 3+ is not that out of normal range for WBC which normal is 4.5 . so likely why your doctor doesn't feel its necessary to repeat. But if you're concerned I'd definitely see my primary doctor and just explain you'd like  repeat to ensure nothing is being missed. By you saing that it is unlikely they would deny you.. Your cough sounds almost like allergies. Have you tried any OTC for allergies, like Claritin or something. sometimes associated post nasal drip can cause a cough. Good luck, I hope you get better. keep us updated.

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2017
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    Hi Everyone, does anyone knows what liver Mets symptom is like? I read it's about jaundice and pain on the abdomen. I started having some sensation under my right breast, non-cancer side, right side of the abdomen, then it kinda goes down to lower abdomen. I'm afraid it's near the liver. I'm also having the usual stiffness of my toes and fingers from the Anastrazole.

  • marijen
    marijen Member Posts: 2,181
    edited August 2017
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    Houston there is a liver mets topic, it's for stage IV, you can read but you can't post. Do you have constipation by any chance? Is the pain all the time? I hope I never find out what liver mets feels like, and can't help you

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2017
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    I just read something about Green Tea Extract and it may cause liver damage. I've been taking it (725 mg) since February 2017. Could this causes the pain? Is it too late? Thank You.

  • marijen
    marijen Member Posts: 2,181
    edited September 2017
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    Yes green tea extract is toxic to liver. I tried some thinking more tea is better but no my enzymes went up. I checked it at the govt. livertox.gov site and sure enough it can cause liver failure. Threw the little dropper bottle in the trash. Enzymes went back to normal at next test a month later. Definitely tell your doctor if you've been taking it and for how long so he/she will test you. Regular green tea is ok and good for you. Just look up benefits of green tea. Didn't have any pain as I remember though. This is why the doctors don't want us to take supplements, they aren't regulated. There were about thirteen people in HI that needed transplants because they took diet supplements.

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2017
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    Thanks Marijen, when you have elevated enzyme, did you also have pain? I had CBC blood work with my OC back in March 2017, other than low WBC, she didn't say anything else. Now it feels like mild sore directly under my right breast runs down to my lower abdomen. I tried to google on liver damage and such but still confused. I setup an apt with PCP but don't know if it's liver damage or recurrence. I also stopped taking everything. The sore doesn't feel anything until I press on it.

  • marijen
    marijen Member Posts: 2,181
    edited August 2017
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    No pain but I've been told liver doesn't feel pain and enzymes were only a little high. Luckily I only used the extract for a few weeks I think. Read it was good for cancer and I had just been dx'd. So I wonder if it's you gallbladder, there is somethng called Murphy pain, you have to look it up. I am no expert on abdominal pain. Except I've noticed with constipation. Good you stopped everything. I hope she orders and abdominal US for you. My pain is in my bones, joints, muscles and surgery area

  • Sara536
    Sara536 Member Posts: 5,937
    edited August 2017
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    Abdominal pain you've never felt before could be diverticulitis. I, like many people, have had diverticulosis for years with no problem. Then soon after starting anastrozole it became infected (diverticulitis). My guess it was because my immune system was shot from the AI. If it happens again (and it's not midnight) I'll try to avoid the ER because their answer to everything is a CT. I hope there are other ways to disgnose it. By the way, the pain doesn't always have to be in the lower left. Mine moved around and settled in thelow center.

  • Sara536
    Sara536 Member Posts: 5,937
    edited August 2017
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    Houston... Abdominal pain you've never felt before could be diverticulitis. I, like many people, have had diverticulosis for years with no problem. Then soon after starting anastrozole it became infected (diverticulitis). My guess it was because my immune system was shot from the AI. If it happens again (and it's not midnight) I'll try to avoid the ER because their answer to everything is a CT. I hope there are other ways to try to disgnose it before resorting to a CT.

    By the way, the pain doesn't always have to be in the lower left. Mine moved around and settled in the low center.

  • marijen
    marijen Member Posts: 2,181
    edited August 2017
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    That's right AI does affect the immune system. Posted that study somewhere yesterday. Thanks Sara

  • Houston2016
    Houston2016 Member Posts: 248
    edited August 2017
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    Thanks Sara, my pain is more a discomfort and it started underneath my right breast , where your six pack is and went downward lower right of abdomen. I'm seeing Dr. Monday morning but we're in mid of hurricane Harvey and some places have no lights , some flooding. We're OK though. I hope anything but recurrence.