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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    TNMTNGAL, with a grade 3 bc, I wouldn’t refuse Anastrazole. I did — went the natural route — and ended up with a metastatic recurrence 6 years after my original dx. So from personal experience, I would say to at least try the Anastrazole. You can always stop it if you have more severe SEs than most, but usually the worst SEs are achy joints and vaginal dryness from the lack of estrogen — both things that can be remedied or greatly improved with complementary things.

    Of course taking any med is a decision we each have to make for ourselves, but I can say without doubt I wish I hadn’t been so against doing an A/I because I might not be in the situation I’m In nowif I’d listened to my conventional docs who all tried to persuade me.

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  • fallprincess
    fallprincess Member Posts: 4
    edited January 2018

    Hi. I was having hip pain this summer, and my oncologist ordered a bone scan in late Sept. The hip was clear, but "something" lit up in the skull bones behind my sinuses, deep inside my head. A CT scan confirmed that there was an area of concern, so I was sent to an ENT doctor to see about the possibility of a biopsy. He said, in effect, no way, literally the most inaccessible part of the body. So my oncologist waited three months and did another CT scan in late Dec. Area of concern was still there, but showed no growth at all. My oncologist says he doesn't know if it is cancer or not. He says it looks like cancer, but it is not acting like cancer. The plan is another three month wait and another CT scan in April. I am grateful "it" is not growing, but the waiting is hard, and I feel that this pattern might go on indefinitely. Is it typical for it to take a long time to get a stage IV diagnosis (not that I want one), or is my case just odd?

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    Fallprincess, I'm wondering if a brain MRI would give any more indepth picture of that area of concern? Not sure why, but brain MRIs do seem to be the imaging of choice to rule out brain mets. A wait and see approach for an area that's inaccessible is really about all you can do, short of chemo to see if it makes a difference. But why risk chemo SEs if whatever is there is benign?

    As far as taking a long time to get a diagnosis, I would say your situation is a bit different. One thing you might consider is getting an opinion from a neurosurgeon -- not just an ENT. And I don't know where you're being treated, but if it's not at a major cancer center, having a radiologist at one of those who specializes in reading brain scans might yield a different opinion, just because they deal with far more brain imaging than a more local facility. So I would consider a second opinion on your imaging from a facility like those listed here (assuming you're not already being seen at one) while you wait and see. https://www.cancer.gov/research/nci-role/cancer-ce...

    Hope this helps. Keep us posted! Hugs, Deanna

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  • fallprincess
    fallprincess Member Posts: 4
    edited January 2018

    Thank you so much, Deanna. I so appreciate your perspective! I am being treated locally, but there is a major cancer center nearby.

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  • cindysmom
    cindysmom Member Posts: 15
    edited January 2018

    Hi All: I started a clinical trial for Stage 2 er+hr-, it is Afintor&Leterozle. I was just wondering what kind of side effects to expect and when will they start. It seems to have raised my sugar way high (I'm a diabetic) so I don't know if I can even stay on the trial. I was trying to find anyone stage 2 who were on the same meds but no luck.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    Cindysmom, I believe that’s a relatively new combo/trial. Is the one you’re doing Phase 3? Assuming it is, have you seen the results from Phase 2? SEs should be outlined within those results, or you can look up each med individually to see potential SEs for each one. Letrozole is a common aromotese inhibitor. For most women, joint pain and vaginal dryness are fairly common. Afinitor SEs will probably be dose related, and I’m just going to make a guess that the Afinitor dose for this trial combo may be lower than the dose used in other approved combos, so very hard to predict.

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  • cindysmom
    cindysmom Member Posts: 15
    edited January 2018

    Thanks for your response, yes this a phase 3 trial. I've been on Letrozole since May 2017 and don't have too many side effects some worsening stiffness in hands and feet. I did read the side effects for Afinitor (started Dec2017) but the only thing I seem to have is raised gulcose numbers. Was wondering if any of the side effects build up over time ie (fatigue and mouth sores are the main se) or maybe I got the placebo instead. In which case I better figure out what else could be effecting sugar levels!

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    Cindysmom, maybe rather than asking about the trial per se, you could start a new topic asking about experience with Afinitor, and maybe specifically ask about the blood sugar concern. Just an idea, as I don’t think enough women are on that specific trial to get responses

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    Cindysmom ~ Just looked this up for you, and hyperglycemia is definitely a listed SE. https://www.rxlist.com/afinitor-drug.htm#side_effects

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  • cindysmom
    cindysmom Member Posts: 15
    edited January 2018


    dlb823- I appreciate your suggestions and maybe different wording would get more responses. I'll definitely read the website you provided. Once again,Thank You!


    Claudia

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  • bluepearl
    bluepearl Member Posts: 961
    edited January 2018

    Goodie16: THAT is just awful and everyone's nightmare who has breast cancer. Was it definitely a breast cancer met? Wow. Definitely NOT supposed to happen with an OctotypDX 9....I am so sorry. I would have thought you were 90%+ out of the woods on this one. (((HUGS))))

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  • Artista964
    Artista964 Member Posts: 530
    edited January 2018

    i have strange sensations in my skull, not headaches or something. Just areas of slight pain/discomfort that changes in areas, like making rounds in an area at a time. Alo sometimes feels like fluid is flowing in there, different areas. I have no other problems that would say something wrong in brain. Skull? Its not a head cold, i know what that feels like and im not sick. Anyone? Tia

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  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    For anyone who's insurance denies you tests...try this!!image

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  • Artista964
    Artista964 Member Posts: 530
    edited January 2018

    saw my pcp today about the skull pain/discomfort that's been around for at least 2 months. It changes spots in terms of where and somtimes feels like headache. It doesnt get so bad that i reach for meds but its always something on the skull or underneath. Ikept saying scalp and so she thought oh you have seborheic dermatitis. Yes i do, since 2005. But that gives me itchies not pain and my scalp/hair doesnt hurt. So got her back around to skull.

    She checked me out. Nothing stood out to her and said maybe sinus even though im not stuffed up or draining. So she didnt know what to think. She offered mri of brain, bone scan to look at skull, or ct of sinus. She kept saying if it was a skull met itd be pretty painful and not letting up or changing spots. I asked her which one. Ive read a few folks here saying anything from no symptoms to some pain/headaches. I also told her about thid fluid moving thing i feel at times. Just weird. Not anything ive experienced in the cold/infection arena.

    So she saw i was nervous and said lets start with brain mri which gives details and go from there. Maybe it is some weird head thing that isnt bad news as she thinks it is. So we'll see. I dont think its all a cold as this has been going on for a long time. I just ignored it until my friend said see doc.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited January 2018

    Hi Rosabella, I know the exact thing you are talking about as I also have this problem. Like you the painful spots move, they can be sore for just a little while or days before they get better. After many scans and tests which showed nothing, my docs came to the conclusion that the pain is nerve endings firing for no particular reason. Like you, my head gets so sore I can't bear to touch it but I now know it is nothing to cause me concern, just another gift from having cancer.

    Hoping you get to the same result after testing is done.

    Love n hugs. Chrissy

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  • Artista964
    Artista964 Member Posts: 530
    edited January 2018

    Thank you Chrissy. :)

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  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited January 2018

    Hoping for some feedback...

    My head hurts and dosen't stop. Started as a mild headache that was just annoying to now I am at migraine level several times a week. It NEVER is gone 100%. Been this way since middle of September. I went to the ER once, had a CT that was clear in November. Even released my head still hurt, however the next day I felt good for several hours before it came back. Only time in the last 5 months I had no headache.

    I have -

    Had my eyes checked, cut out 99.99999% of alcohol, seen a chiropractor, drank more water, CT scan mentioned above and a thyroid related surgery (one known symtom is headaches) in December. Nothing has helped and they are getting worse.

    Is it possible the CT missed something or it was too small and something would show up at this point? I discussed this with my MO yesterday....he basically didn't care once I said the CT was clear.

    I have an appointment with my general doc Monday, #1 on my list to discuss. Any suggestions? Push for another CT? Are these symtoms related to brain mets? I do not have numbness/tingling/loss of use stuff. I do have dizzy/light headed spells when they are the worse.

    No chemo, no tamoxifen, no cancer related treatment that would cause headaches. I'm at a loss....

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  • Artista964
    Artista964 Member Posts: 530
    edited January 2018

    i just had mri of my brain for 2 mo of headaches. Found polyp or retention cyst in my maxillary sinus. Fu with pcp on mon. Nothing else off. So guessing I'll be having it removed surgically. Says these are benign on dr google. Check your sinuses. Gl

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  • MJHJAN1014
    MJHJAN1014 Member Posts: 708
    edited January 2018

    greeneyes-perhaps a referral to a good neurologist? I think mets would have shown up. Best, MJH

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  • dlb823
    dlb823 Member Posts: 9,430
    edited January 2018

    Greeneyes, I'm so sorry about your unrelenting headache. That sounds absolutely miserable. A few thoughts... A brain MRI is the scan most commonly done to rule out brain mets. Not sure if a CT shows as much or why the MRI is more often used, but you might want to ask your onc or PCP if an MRI would show anything different than the imaging you had at the ER. The fact that it's gotten worse absolutely merits additional imaging.

    You mentioned not being on tamox, but what about normal menopausal symptoms? Could you possibly be perimenopausal? Fluctuating hormones are a big cause for migraines, although every day would be quite a severe situation.

    If it's any reassurance to you, while brain can be the first metastatic site for ER+ PR+ Her2- bc, it's uncommon. Most of us show up with bone mets, probably followed by something going on in liver of lungs.

    I totally agree with the other suggestions as well -- both checking sinuses and seeing a neurologist if your onc or PCP can't make a dx. I would also be sure to ask your PCP for a very compete blood panel, including blood sugar, etc.

    Good luck! Glad you came here for some reassurance. Please keep us posted on anything further you find out, but absolutely insist on whatever tests are needed to reach a dx, pain relief, and peace of mind! Deanna




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  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited January 2018

    Thank you ladies, all great feedback! I'm 36...so not thinking pre menapause but who knows at this point. lol Still could be hormonal of course. My aunt asked about that as well. More blood work it is and I will ask about an MRI.


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  • Goodie16
    Goodie16 Member Posts: 446
    edited January 2018

    I agree with much that dlb823 said. Def get a brain MRI, as a CT is not the best way to diagnose brain mets. While it's unlikely that you have them, it can and does happen. I had a solitary brain met and it was treated with surgery and gammaknife. I've been NED for almost 3 years now. Get it checked out! Headaches are absolutely miserable.

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited January 2018

    TNMTNGAL: Great tip on the hack for insurance denials! I just had some dumb cobra/ insurance drama, and it's great to know suggestions like this for future reference. Hope to NOT need it, but thanks for the heads up! Gonna keep it in my back pocket!

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  • goodprognosis
    goodprognosis Member Posts: 251
    edited February 2018

    Wondering if posters on this thread are aware of up and coming proposed changes to BCO site. Here's a link if you want to inform yourself.

    Are You Aware of/Concerned about proposed BCO thread changes?

    GP

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  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    You're very welcome!! @GroovyWilma

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  • TNMTNGAL
    TNMTNGAL Member Posts: 110
    edited January 2018

    @Rosabella I have those polyps in my sinuses. They didn't take them out and said they're common. Good luck

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  • maryland
    maryland Member Posts: 1,298
    edited January 2018

    In Feb, 2014 I noticed a "dimpling" in my right breast, looked kind of like cellulite but I was barely an A cup. So one thing led to another and I was dx with stage 3c ILC, 10 0f 11 positive lymph nodes left breast, bilat mx and LCIS in the right breast. Chemo, 31 rads, implants. I've been taking Arimidex since and in the past 4 years I've had 2 bone scans for lower back pain (arthritis, ruptured discs) and a chest x-ray once for a persistent cough which was fine, tail end of a cold and got better on it's own. My doctor does TM's at my insistence, CA15-3, CA27-29 and CEA. all have been fine until 6 months ago when my CEA was 3.1. Normal is 2.5 so hardly enough to worry about. About 2 weeks ago I noticed a lump on my BC side, feels like a thumb, it's just above my scar and sitting on top of the implant. I had my biyearly apt scheduled with my MO last Monday so I mentioned it to him thinking he surely would say it was scar tissue, well he didn't. He sent me back to my plastic surgeon to see what he thought and he concurred and sent my for an ultrasound which came up abnormal so now I'm having a biopsy on Tuesday. I am so freaked out! Could be nothing, could be a local recurrence but the thought of BC rearing it's nasty head again has me terrified. And then the MRI and bone scan and all that may follow to look for mets....ugh.. So I've been off BCO for months, I find I think less about it that way and I'd finally gotten to the point where it wasn't the first thing on my mind when I wake up and here I am, awake an hour before my alarm goes off and typing on BCO. Nothing much to be said, I have to wait till Tuesday, and to make matters worse, I am scheduled to have a total knee replacement on Feb 14 so now I don't know if that'll still happen. Oh, and my CEA is now 4.8, still not terribly high but why is it creeping up? I guess I don't have any questions but wasn't sure where to post this.....Here I go again.......

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited January 2018

    Hi Genny, yes, cancer sucks big time alright and it's never pleasant when we think we've finally begun to live again.

    You said that you are due a total knee replacement soon as well as your markers being above normal........were you aware that inflammation in your sysystem can also make your markers rise? Just a thought as to an explanation of your markers rise rather than cancer.

    I know you don't want to face the possibility of cancers' return but once we have been dxd it's always a possibility but not necessarily a probability.

    It's a good thing that your onc has sent you to your surgeon for further consultation. Please let us know how you get on.

    Love n hugs. Chrissy

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  • maryland
    maryland Member Posts: 1,298
    edited January 2018

    Thanks Chrissy, you are right, CEA rise could be from inflammation, were it not for the lump I probably wouldn't give it much thought. I'd almost forgotten how hard the waiting and not knowing is....almost. Nothing I can do now, I'll have the answers soon enough, I'll let you know.

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  • GreenEyes81
    GreenEyes81 Member Posts: 389
    edited January 2018

    Willbe thinking of you Ginny. Here is to Tuesday coming quick!

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