TRIPLE POSITIVE GROUP

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  • cypher
    cypher Posts: 447

    Rhonda, I believe Ashla had rads face down. 

    Alaska, interesting about the karolinska institute.  I have a question for anyone who did experience a reduction in breast density while on tamox – is there anything you can tell from the outside, or is it just from mammos?  I was just thinking that there might be less firmness, etc.  I feel like the skin is looking slightly different on the noncancer side as well.  So naturally I go straight to freaking out but I am trying to think of other reasons (including chemopause).

     Chicka, good luck next week.  You sound like you have a very positive attitude, and that will help get you through it.  Remember, lots and lots of water, and lots and lots of protein.

  • AlaskaAngel
    AlaskaAngel Posts: 694

    cypher,

    I noticed a difference (lessening) in firmness and more saggy-ness, not so much right away but within a year. It makes definite sense to me. Estrogen is what maintains the branching support system inside the breasts that IS the breast density, so it makes sense that when the estrogen receptors are tied up with tamoxifen, that prevents estrogen from both supporting cancer cells as well as from supporting the cells that form the support for the inside tissues of the breasts. Reducing the access of body cells to estrogen results in drying out the tissues in various parts of the body... although not so much in younger patients maybe... and that drying out reduces volume, which also results in less firmness, I think.  (All speculative on my part.)

    A.A.

    P.S. I also suspect that if one does have a low AIB1 level, and breast density diminishes significantly, it may be a way to indicate that short-duration use of tamoxifen is quite adequate.  At least, it seems to have worked that way for me. Once the density was gone, it never came back.

  • ashla
    ashla Posts: 1,566

    Pbrain..

    My hair grew very slowly. It didn't start growing at a normal rate till I finished herceptin in October 8 mos PFC but I went topless when I had barely 1/2 inch of hair after rads. The thought of the wig in the summer was unbearable. Surprisingly , although I had only had short hair once in my life...everyone liked it including me. I'm at the gowing out stage right now and am actualy thinking of buzzing it back!

  • tonlee
    tonlee Posts: 1,590

    Hi Lago!

    AA,

    Went to ENDO about the testosterone cream.  He doesn't prescribe ANY hormones.  Said any sort of hormone is dangerous so he leaves that up to the Gyns.  He also told me the adrenals produce testost. and more than make up for the lack once the ovaries are removed. 

    DHEA vaginal cream.  He said DHEA is such a weak hormone, that what little bit may get into my system is not going to be an issue.  In fact he insinuated that I could take DHEA over the counter without ill effects even though I was so hormone positive.  Said it is THAT weak.  (Which explains why they thought to use it for VA in trials.) 

    However, he is consulting with my Onc about this issue...so we'll see what they come up with.  He IS very interested in my results should I get it from the Onc, and wants to follow me (when I see him for thyroid every 6 months)....he said he's willing to learn. :) 

    Frankly I don't have time right now to fight for it. 

    Please keep me posted on your progress with it.

    Have a great day ladies I'm off!

  • ashla
    ashla Posts: 1,566

    Rhonda2,



    I had tomotherapy...face down rads. I saw the pics and although they don't guarantee it, seems highly unlikely anything other than the breast gets zapped. What would you like to know?

  • ashla
    ashla Posts: 1,566

    Fluff..

    You look lovely! Should say..you are lovely!!

  • vballmom
    vballmom Posts: 153

    Pbrain, I went topless after about 8 weeks.  I finished chemo Oct 2nd and by Thanksgiving I was almost ready.   I never went with a regular wig - mostly scarves, so it probably wasn't a huge shock to anyone.

    Fluff - I agree with Ashla - lovely!

    I also had EF issues with Herceptin. I had a  three-month holiday and have been back on it since January.

  • bren58
    bren58 Posts: 688

    Pbrain glad you are getting your hair back! I am 9 weeks PFC and finally have a 5 o'clock shadow on my head.

  • Pbrain
    Pbrain Posts: 773

    Bren, I hear you are more common than I am with hair growth.  My boss finished chemo at almost the exact same time I did (end of February), just 5 years earlier.  She says she didn't even see a 5:00 shadow until August.  So I guess I am just a fast grower.  Lago, thanks for your pictorial.  I was trying to find that on the board the other night.  I will wait maybe 2 more weeks, because unlike Vball, I've mostly worn a wig.  Corporate America scares me and I don't want to look sick at work.  And Ashla, I am with you, no wig over the summer.  No way!

    Ton Lee, one of the nurses that treated me during radiation was talking to me about testosterone because I was struggling with some menopausal symptoms (insomnia).  She said that the docs prescribed it to women with breast cancer to ease menopause when she worked at a large clinic in Kentucky.  My Rad Onc came in while we were talking and continued the discussion.  He says there is a lot of information out there that shows the non-estrogenic treatments are safe for BC patients, but he also says no one will prescribe them.  They just get nervous giving hormones to us gals.  It will be interesting to hear what your MO says.

  • lago
    lago Posts: 11,653

    My ear has grown, having some discomfort now and is very annoying. I have a slight pressure headache from this now. Ear now hurts, maybe throbs a little but I don't think it's infected.  Called Tuesday but I knew the doctor wouldn't get the message. He always calls back the same day. Called back today. He's not in but a different doctor told me I should try to get in and see the Otolaryngologist before Monday. (Don't ask me how to even pronounce Otolaryngology). Gate keeper idiot says for a cyst I can wait till Monday. I told him we don't know for sure it's a cyst. Still no go. Not sure when gate keeper got medical degree.

    I said if this was an emergency you're telling me the only recourse I have is to go to the emergency room. He said yes. Then I asked if there was a charge to cancel appointments in less than a 24 hour period. He replied "no". I said OK then I will try to find another clinic that might be able to get me in sooner.

    Let the PCP fill-in MD know I can't get in.

    http://i1088.photobucket.com/albums/i323/lauren3g/EARsm_zps91527428.jpg

    By Monday my left side will be full fledged ferengi. Why is it always the left side?

  • omaz
    omaz Posts: 4,218

    lago - Ouch!  Is it warm to the touch?

  • omaz
    omaz Posts: 4,218

    Was it from a bug bite?

  • lago
    lago Posts: 11,653

    No bug bite. I would have gone down by now. Saturday will be 5 weeks and its getting bigger and more painful. It's warm but my entire body is warm to the touch. It does scaring me that it's hurting me more. I just don't think this is a go to the emergency room kind of thing when I have an appointment on Monday afternoon.

  • omaz
    omaz Posts: 4,218

    I didn't realize it was 5 weeks!

  • eileenohio
    eileenohio Posts: 268

    Oh my goodness Lago..  It looks painful..I think you should consider the ER,you can not suffer with this until monday. The funny thing is that the ER doctor will most likely call your PCP ..Hope you get some relief. Maybe a Hot compress will help?

    Take care -- Hugs   Eileen

  • Pbrain
    Pbrain Posts: 773

    Can you go to a minute clinic to get a broad-spectrum antibiotic?  If so, I'd do that, take Motrin and wait until you can see the specialist.  It is likely a cyst, but you don't want a primary care person messing around with your ear.   A lipoma (benign) wouldn't grow that fast.

    Keep us posted!  I know how icky localized pain is.  I just had an abscess wisdom tooth pulled and that was sweet relief.  I think that thing was way more painful than my breast cancer treatment was!

  • bren58
    bren58 Posts: 688

    lago, that looks really painful. I hope you can get someone to look at it before Monday!

  • Rhonda2
    Rhonda2 Posts: 99

    Ashla and all,



    Thanks for the quick response to my question about rads. We are going with the prone position. I originally asked all of you because it was not offered to me. Once I mentioned it the dr he agreed with the prone position.

  • lago
    lago Posts: 11,653

    Update. I'm going to see my PCP tomorrow morning. He's not in today and the doctor that was in today felt:

    A. there's really nothing she can do
    B. he knows what size it was before. If it's an issue he will send me to the emergency room.

    She was saying I could just go to the emergency room. But I felt that if I don't need to go I don't want to go. Waste of resources and also exposes me to more crap for a long period of time, let alone the expense.

    Yes I have enough discomfort to take meds. The Exedrin has helped some… and the headache is now mostly gone.

    My PCP will be retiring in July but this PCP I've been talking with today will most likely be my PCP in the future. She does seem to return calls. Spoke with her 2x today!

    I feel so deformed. I was planning on getting my hair cut and colored on Wednesday. Might have to fit it in on Monday morning. I doubt they will want me doing that after if the screw with this thing Monday afternoon.

  • ChickaD
    ChickaD Posts: 971

    OH Lago -- so sorry about your ear -- ouch!

  • LAGO; IT COULD BE YOUR PAROTYD  GLAND WHICH LIES ANTERIORLY TO THE EARS. IT IS A SALIVARY GLAND. WITH AN INFECTION IT BLOCKS THE SALIVARY DUCTS AND IT CAUSES PAIN AND DIFFICULTY WITH SALAIVA PRODUCTION.THE PROBLEM IS THAT IT IS OFTEN A STAPH INFECTION. YOURS LOOK ABIT HIGH BUT IT IS SOMETHING I WOULD CONSIDER WORTH GOING TO ER ASAP. I WORK IN A HOSPITAL

  • lago
    lago Posts: 11,653

    I'm not convinced it's Staph. I've had Staph before from blemishes (once on my forehead other time in my leg when I was in my early 20's. It spreads fast. My entire face blew up and my leg was bright red). My husband used to work in the ER years ago. If he things I should go I will. He gets home in a couple of hours.

  • camillegal
    camillegal Posts: 15,710

    Lago OUCH is right---Let us know what u'r husband thinks and if it hurts rhat much I would go to the ER and I'm not an ER person and if they call ur PCP they will know how seriously u'r taking this.

  • lago
    lago Posts: 11,653

    DH says it got bigger even compared to last night. Must be pretty big because he tells me my butt didn't get bigger after I gain weight. Tongue Out

    He does not feel it is infected with staph. I have an appointment with my PCP tomorrow at 10:30… 13  hours from now.

    Took some Excedrin this afternoon… it's finally wearing off. I'm about to take more before it starts to feel like it did this afternoon.

  • fluffqueen01
    fluffqueen01 Posts: 1,801

    Lago...ugh, you poor thing. I hope it is something insignificant, but I really think those are the worst sometimes, and the most annoying.



    I am still working my way down on the Effexor. I have to take a half a pill every three days. Bad headache, some nausea, and the brain zaps. A general feeling of malaise.



    And, I am not sure what is causing this, but I am ravenous every three hours, stomache growling, etc. I am gaining weight just looking at food, and then I am tired, from what I assume is the Effexor withdrawal, so I haven't been maxxing my workouts effectively. I expected this when I was on steroids and chemo, not now.



    And my scapula area still hurts, although no worse than it has been for several months. I need to start working on my arguments for some follow up tests.

  • arlenea
    arlenea Posts: 1,150

    Femara? I'm down in the Cayman's on a dive trip. A friend who was on Arimidex and just switched to Femara arrived with legs so swelled she had to get a wheelchair in Houston because she couldn't walk. ..ANY of you on Femara have that issue? She stopped it. She's diving though but didn't have chemo because not HER2 however she she only finished RADS in October.

  • arlenea
    arlenea Posts: 1,150

    Goodness Lago, trying to catch up. Sounds so painful,

  • Dear lago,

    Just posting a note of support for you. Thank goodness you are seeing a qualified doctor tomorrow.  Prayers are being said in Toronto, Canada, for you tonight.  Wink Hope the pain is controlled through the night. 

  • lago
    lago Posts: 11,653

    You guys are so sweet. Trust me this is a benign thing that is just a real PITA. I'm just losing my patience. It's been 5 weeks with this thing. It didn't bother me much before but now it hurts and gives me headaches so I'm a bit annoyed. Nothing like surgery, chemo or shingles though. Save the prayers for those who really needed it. I just wish the ENT guy didn't make we wait 5 weeks to see him. This could have been resolved last week before it became painful!

    It really does look like I have a mini expander in my ear doesn't it Tongue Out

    Water retention with AIs. I am still taking a small amount of diuretic. My PCP felt it was from Anastrozole, a less common SE but it is listed. You should see my legs when I eat something salty. My legs get so shiny and of course bigger. I can still walk though.

  • Jennt28
    Jennt28 Posts: 1,095

    lago - hope that it goes well with the PCP in the morning and he/she can sort it out and give you some relief!

    Jenn