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  • Eleanora23
    Eleanora23 Posts: 39

    HERCEPTION AND ECHO QUESTION UPFRONT: ECHOCARDGRAMS needed after Treatment? After Herceptin is done?

    (then update below): I finished A year of herception in June. I am coming up on three months soon since last echo. Now that I am post-treatment, I'm thinking another echo might still be in order as it takes time for HERCEPTIN to leave the body...is that right? I've been in a kind of information gap during this entire treatment process and my MO / her nurse are not very informative. I also might have bad memory too !

    Thank goodness for the information HERE in these threads! Ya'll are great !

    UPDATE My June first post treatment MAMMO was, thankfully, normal .. Yikes I have forgotten when the next one will be !

    I'll as about my aromatase question on that thread I guess, also my doctors (I switched MOs, and both are really too busy to accomoadate my questions, but the first REALLY was.. ) I see women discussing starting AIs right after surgery? ! I wasn't told to take it until well after radiation. I'm still up and down with my compliance.

  • specialk
    specialk Posts: 9,299

    fleur - take someone with you that can take notes, or ask the doc if you can record with your phone. This is your first consult, correct?

    deni - congrats!

    eleanora - I would advise an echo at the six month point. I started my anti-hormonal a month after my last chemo, and I did not do rads. Some start during rads, some wait to make sure which thing is causing which side effect. I answered your other question about risk on the thread you started a minute ago.

  • Dannajae
    Dannajae Posts: 40

    Tomorrow I have a genetics assessment, and Friday I see the Radiation Oncologist for the first time. It's unlikely that I have the BRCA gene, but I can't help worrying.

  • cherry-sw
    cherry-sw Posts: 784

    Congratulations deni1661! Wish you DFS for many many years to com

  • FleurDeLis49
    FleurDeLis49 Posts: 43

    SpecialK - correct, my first time seeing anyone other than my surgeon.

  • cherry-sw
    cherry-sw Posts: 784

    FleurDeLis49, I had my first appointment with oncologist two weeks ago. I was told to make a list of questions but I understood that before I could pose a question I had to know what I wantedto know. I red my diagnosis and a lot of info about it here on the boards. Everything that you do not understand just write it down. The questions about the tumor for ex, what its characteristics mean and how they influence your future life in terms of cancer never coming back. Then probably why they recommend this treatment rather than the other, what are your options pro and cons, SE vs higher dfs. How you can avoid the long term side effects, what would happen to you body while chemo, rads, Tamoxifen etc. What to eat and not, what can you take to prevent SE. Read about Herceptin and ask your questions. Their answers will be more specific If they know what you want to know. This is what I did but I was dissappointed anyway, that there were no tool to predict my case and no way to do monitoring rather than annual mammograms and ultra sounds. This uncertainty is very hard to accept, that things can happen even though you do everything you are supposed to, the treatments and still cannot be enough. This for me was the hardest part. Good luck,Cherry

  • moodyblues
    moodyblues Posts: 393

    Hey all, I can't seem to find a place to add my Herceptin in on my chemo treatment, it's just not listed.  Any tips on where this may be so that I can add it in?  Herceptin (trastuzumab).  I know there has to be a place because everyone else has it!

     

    Thanks!

    Melanie

  • toughcookie_21
    toughcookie_21 Posts: 60

    hi Melanie, I just figured that out myself. There's a section under treatments for "targeted treatment." I couldn't find it for a bit either. It's separate from chemotherapy.

  • specialk
    specialk Posts: 9,299

    moody - go to your profile, click on add a new treatment, it should be under targeted therapy treatment.

    fleur - also ask in your consult how you will be followed after treatment. This is a subject that many don't consider when choosing an oncologist - there are a number of different approaches and some are disappointed with how that unfolds when treatment is done, but don't think to ask about it initially because they are so focused on getting treatment started. It can be frustrating if the oncologist is a hands-off type once treatment is done and does not offer periodic bloodwork or imaging beyond mammography/US.

  • emily_mh
    emily_mh Posts: 53

    Hi all, I've been reading lots of posts and trying to catch up after having not been on the boards for awhile. Some times reading really cheers me up and sometimes it really bums me out. I just had round 3 of TCHP yesterday, 3 down, 3 to go. I'm having a really hard time deciding about surgery. My MO tells me even though I am 46, tumor size was 4cm but has shrunk to 2cm, a triple positive, grade3, aggressive tumor -she says I am a candidate for lumpectomy. When I first was diagnosed back in June, I instantly thought get these things off of me I want a mastectomy. But since I had chemo first and have had time to really read and think -I'm as unsure as ever. MO says she thinks (and she understands) people try to cure the cancer with surgery -but it's really the chemo that is going to decide if your cancer is going to come back. And I know recurrence rate is higher for lumpectomy and survival rate is same. I think I'm leaning towards lumpectomy now.. Also because implants scare the heck out of me. If anyone knows of stats that would be helpful in decision making please let me know but I really am starting to think they just don't exist and I just have to be comfortable with my decision.

    thanks for letting me ramble on... no need to even answer me, it's just good to put this out there.

  • cherry-sw
    cherry-sw Posts: 784

    Hi everybody,

    Here come a list of the products my eldest daughter used for her acne. She never had a severe one but she was upset over every zit and pimple that we tried whatever we found.

    - US products from acne.org (various, some of them pretty strong)

    - Effaclar products from La Roche-Posay, she is still using their wash

    - Basiron (bensoylperoxid) AC Wash gel 5%, this is a product we have in Sweden

    Two prescribed medicines:

    - Isotreotin Actavis 10 mg (pills, worked very well but her liver tests turned not so good she had to stop after a couple of months) the effect lasted for several months

    - Acnatac 10 mg/G + 0,25 mg/G clindamycin + tretinoin (manufacturer Meda) an oinment she is using right now, she says it works

    Cherry

  • Eleanora23
    Eleanora23 Posts: 39

    Thanks for the reply SPECIAL, I definitely would feel most comfortable having at least the one ECHO post herceptin and will ask for it at my first follow up. !

  • cherry-sw
    cherry-sw Posts: 784

    Hi emily_mh,

    I have already mentioned it here that the glandular tissue can be there up to clavicle, my tumor was above the breast, they missed it on mammogram and the ultra sound in January. There are always be some tissue left. I live in Sweden and here they say that mastectomy vs lumpectomy plus rads are equial with the same survival rates. I also wanted them off but when they explained and said that it will be lumpectomy because mine was technically not in the breast. And also mastectomy scares me too.

    Cherry

  • moderators
    moderators Posts: 9,722

    HI All,

    Puma Biotechnology has patient communication material about the newly approved drug called NERLYNX . They are looking for people currently on Herceptin to review this 3 page communication and answer the questions below. However, the document is still confidential, so all who review (including us) need to sign a confidentiality agreement.

    If you are interested, please PM us and we'll get you the confidentiality agreement, and the document.

    We, and Puma Biotechnology, greatly appreciate your help with this!

    Best,

    The Mods

    Some of the feedback questions that they would be interested in receiving are the following:

    1. Is this language simple enough to be understandable? If not, what specifically needs to be simplified?
    2. Is there anything we're not explaining fully or clearly enough?
    3. Are there any messages missing?
    4. Are there any messages that are unnecessary?
    5. Are there any messages that raise questions for you?
    6. Are the messages in Stage 1 hitting the right tone and providing the right information for women who are just diagnosed/just starting to plan their treatment?
    7. Are the messages in Stage 2 hitting the right tone and providing the right information for women who are just finishing their Herceptin therapy?
    8. What is the best term to use with care partners when referring to their patients/loved ones?
  • poseygirl
    poseygirl Posts: 298

    I'd be up for answering the questions...where do I pm you?

    And I have a question for them...how can a Canadian access the drug privately? I'd like to know who their Canadian partner will be in getting this (I.e. I can get to Perjeta through a company here and just require my oncologist's ok to do it). Thanks

  • FleurDeLis49
    FleurDeLis49 Posts: 43

    Thanks for the advice for my consult! I'll let you know how it goes.

  • emily_mh
    emily_mh Posts: 53

    thanks so much for your post Cherry

  • elainetherese
    elainetherese Posts: 1,640

    Emily,

    By the time I finished chemo, my 5 cm.+ lump was gone. So, I chose a lumpectomy. I didn't really want to go flat, and I didn't want to have reconstruction, which can involve multiple surgeries. I work full-time, and have twins with autism. I felt I couldn't be debilitated for weeks at a time.

    I'm happy with my lumpectomy outcome. My right breast is a little smaller than my left one, and there is a scar on my right breast. But, I've retained sensation in my breasts, and my cleavage looks fine.

    I'm not really afraid of mastectomy; if I have a local recurrence, I'll be happy to go that route. But, once your own breasts are gone, they are gone. I figured I'd keep mine as I long as I can.

  • moodyblues
    moodyblues Posts: 393

    SpecialK and Cherry.  Thank you!

  • moodyblues
    moodyblues Posts: 393

    I think I got it but, it's not showing yet?  I saved it.... hmmm?


  • kae_md99
    kae_md99 Posts: 394

    hi all,

    i am 45, osteopenic, hip joints bordering on osteoporosis. onco suggested prolia shots twice a year.. anyone have had these shots and any side effects??thanks

  • specialk
    specialk Posts: 9,299

    kae - there are several Prolia threads, I will link below. I was osteopenic prior to breast cancer diagnosis due to a total hyst/ooph at 45 and also fitting the physical profile - Caucasian, petite. Chemo and the first six months of Femara drove my osteopenia to the brink of osteoporosis so my MO started me on Prolia - this was Feb of 2012, and I have received an injection every six months since then. My MO has stated that as long as I am on an AI I will get Prolia. I have had zero side effects and the drug has reversed me back to normal density. This reduces my fracture risk, both Prolia and bisphosphanate drugs (Fosamax, Boniva, Actonel, and IV Reclast) also offer another benefit - strengthening bone density makes your bones a less hospitable environment for bone metastasis to set up shop.

    https://community.breastcancer.org/forum/120/topics/857839?page=1#post_5023554

    https://community.breastcancer.org/forum/78/topics/827380?page=1

    https://community.breastcancer.org/forum/78/topics/856779?page=1#post_5002870

    https://community.breastcancer.org/forum/120/topics/842125?page=1

  • kae_md99
    kae_md99 Posts: 394

    good to know! thanks specialK

  • poseygirl
    poseygirl Posts: 298

    yes, good to know about this. I am petite and my maternal grandmother had osteoporosis. My mum is in line for a hip replacement. I'm concerned about my bone density over time. My first bone density scan was normal, but I will ask to keep on top of it. I also plan on adding in some substantial weight lifting this fall. Thanks for the heads up about this med..

  • Tresjoli2
    Tresjoli2 Posts: 579

    Deni congrats!

    Beachgirl so sorry you have joined us...

    I'm still plugging along in my quest to find an antidepressant. So far, the lexapro isn't making me feel good at all. Celexa made me feel well mentally but I couldn't sleep and had heart palpitations. Effexor was a night mare.

    This journey is so hard. For me, I'm mourning the loss of my premenopausal self more than anything. I want my estrogen back and I can't have it. I want to wake up on April 20th 2015 and be the person I was before. The one who was in deep discussion with her hubby over whether to have a third baby. A choice that was taken from me. The girl who swept her shoulder length hair into a high ponytail without a thought. The girl.who didn't know that "vaginal atrophy" was actually a thing. I look at old pictures of myself and think...that girl is gone. I don't know how to stop wishing to go backward...😔

  • deni1661
    deni1661 Posts: 425

    Emily - I had to have a mastectomy because I had 2 tumors far apart and enhancements on the outer quadrant. I asked about lumpectomy because my tumors were not visible on MRI after neoadjuvant but my BS didn't want even 1 cell left behind to get into the lymph system (enhancements were close to lymph). That pretty much sealed the deal for me. If your surgeon is recommending lumpectomy I would go that route but in the end it's such a personal choice that you have to be completely comfortable with. My BS said about 50% of her patients choose double mastectomy because they are worried about recurrence. I chose to remove only one breast because she said removing the healthy breast didn't improve survival but did pose more risk during surgery and recovery. Ask lots of questions and read some of the surgery boards here; that really helped ease some of my concerns.

    Good luck and take care
  • Eleanora23
    Eleanora23 Posts: 39

    Congrats on finishing up that first day !

  • Eleanora23
    Eleanora23 Posts: 39

    Hi Special , I didn't see your answer earlier but I will check again - the one about AI risk reduction. Thanks.

  • lita19901
    lita19901 Posts: 176

    Tres - What you describe is sometimes even harder than the actual knowledge that we have breast cancer.

    Thank you for sharing your thoughts so eloquently.

  • cherry-sw
    cherry-sw Posts: 784

    Tresjoli2, I so undestand you, I know it will not give you any consolation, but everybody in this situation feels like this. I do every day, every day, feel exactly what you are telling. I have a cognitive dissonance when I sit in the hospital waiting for the next test or appointment and people pass with their newborns. It could be me, I was pregnant 15 months ago and now I am having chemo and they will force my body into a menopause and I cannot think of my children because my youngest is to young to go through it all, how did it all happened?! Every day, every day I want someone to wake me up and tell me it was all just a nightmare. I do not know what to do to make myself feel better and stop being so afraid and sad. Antidepressives are not for me, not so far, I want to feel I still own my life just a little. People told me about mindfullness and I am tryingto be grateful for everything I had and still have but it is just so unfair. I do not have any piece of advice, I only wanted to tell you that I am in the same place and miss my life so that it hurts and I know I cannot get it back. And that you have all right to be sad and sorry and angry, and you miss your life before it and you have all right to do it Cherry

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