Team ILC Warriors

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  • Momine
    Momine Member Posts: 7,859
    edited November 2014

    Jojo, it is very individual with the SEs. Some people have a terrible time with tamox and a fine time with an AI and vice-versa. Also, there is a lot of grey between horrible SEs and no SEs. I think most of us fall in this grey area. Finally, you talk about what you can "afford." From one POV, you can't afford NOT to take one or the other.

    Have you asked Wong if he would be willing to talk to your 2nd opinion onc? Don't assume he wouldn't be willing to discuss.

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014


    Hi Momine!

    If I decide to do the Lupron and try femara, for example, and have terrible SEs etc...is it easily reversible to stop and go to Tamoxifen or is it better to start with Tamoxifen.  I will see what 2nd opinion says but everything I see is that Lobular is better with ALs.  As far as what I can afford, I wasn't referring to the anti-hormonals...just the extra supps.  I do believe I need to start some anti-hormonal at this point as I feel like I dodged a bullet.  And, good point about Wong, I should not 'assume' before officially askingSmile

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  • Momine
    Momine Member Posts: 7,859
    edited November 2014

    Jojo, yes, you can switch and that should clear the SEs of the previous med in 3-6 weeks in most cases, sometimes faster.

    Also, please keep firmly in mind that it may feel like a bit (ok sometimes a lot ;) ) of a rollercoaster in the beginning with the lupron+femara, because it hurls you into menopause. Usually that part will pass. It certainly did for me. Then the actual SEs from the med tend to come and go. So even if you have some really annoying SE, that doesn't mean it will continue forever. It took me about 6-9 months to adjust and now I really feel totally fine 95% of the time. Yes, I have SEs and sometimes they really bug me, but they are not chronic and exercise and generally taking care of yourself can help a great deal.

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014


    I am so deathly afraid of thee SEs...LOL

    Oh, how I hate these decisions/

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  • Momine
    Momine Member Posts: 7,859
    edited November 2014

    Jojo, most of the SEs are things like hot flashes and random aches. They are annoying, of course, but really not something to be afraid of.

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  • lekker
    lekker Member Posts: 594
    edited November 2014

    Jojo - also consider asking about denosumab. There's currently a clinical trial at UCSF that hypothesizes that by disrupting the bone destruction cycle, it makes it a hostile environment for disseminated tumor cells (which is what isolated brest cancer cells in the marrow are called).

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  • Galsal
    Galsal Member Posts: 1,886
    edited November 2014

    The injections for Lupron are not bad at all...at least for me. I'd had a few done at the VA every six months and before doing it they would use the can of freeze spray. When I moved to a non-VA Onc and the RN was going to give me the injection, she was going to do it without any prep. Stopped her, asking what's up with that, explained how is done at the VA. She got a surprised look on her face, said oh we can try it that way, gets the spray and all goes well. After she was like that's a great idea...we'll be using it now. SMH

    It's most definitely not often that the VA handles something in a not only better but logical process!


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  • Momine
    Momine Member Posts: 7,859
    edited November 2014

    Lekker, thanks for posting that. My doc mentioned last time that "we now hypothesize that Prolia (denosumab) protects against bone mets," and I forgot to ask why he said that. He must have been thinking of this trial.

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014


    So, is denosumab taken in place of the other inhibitors or in addition to?

    Also...freeze can spray?  Please ignore my ignorance...isn't Lupron just a basic shot?  I am freaking out...LOL

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  • daisylover
    daisylover Member Posts: 310
    edited November 2014

    jojo - I get a monthly Lupron injection without freezing - feels like a flu shot in my butt? They offer the injection with or without prep at my cancer center... I just figure less unnecessary chemicals is better for me. Yesterday, they gave me both flu shot in arm and Lupron in butt - flu shot injection site hurt longer...

    I worry about SE as well. However, you have to take some risks in ALL treatments and you will not know your (each person is unique) side effects until starting the treatment. That is the toughest part - choosing your treatment not knowing your SE and how effective the treatment will be for your cancer. With all this careful thought, you will make the right decision for yourself though! Once you decide and get started, possible SE will seem less overwhelming. As Momine suggested, exercise is extremely helpful with regulating Lupron SE of hot flashes and swelling for me. My SE are typical menopause stuff. The SE get less intense over time for me. Once your body adjusts to menopause, the SE should improve. My non-cancer friends deal with a lot of the same menopause SE! (It's just a more intense entrance for those of us on Lupron, or with ovary removal, I would guess...)

    Best, Martha

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014


    Martha...what kind of swelling is a side effect?  edema?

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  • Lily55
    Lily55 Member Posts: 3,534
    edited November 2014

    jojo, remember there are 3 AIs so you have 3 options, i changed from one to Aromasin, and the side effects are significantly less, some days are a lot worse fir no reason.......but so much better than Femara fir me. Exercise helps with stiff and tight joints......even my naturopathic doctor said nothing is as effective as the AIs.....you may not have any, or only very slight ones........dont read side effects first then see how you do.........I dont like it at all, but.......

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  • daisylover
    daisylover Member Posts: 310
    edited November 2014

    jojo,

    I get edema in my ankles (visible) from about 2 hours to 12 hours after the injection now - used to be longer and bother me more. I have truncal lymphedema after my BMX - only on right side where axillary nodes were taken. It seems aggravated by Lupron shot as well. In my younger days, I used to retain water (mostly noticeable in abdomen) with my periods - maybe a similar effect? I ride my stationary recumbent bike and the ankle swelling resolves. (Shot yesterday at 8:00 am, slight swelling last night, no swelling this morning) I would guess that others might not experience this? I am very sensitive to drugs! I think most people are more bothered by the sudden hot flashes? Over the past 6 months, I have noticed fewer SE from Lupron. Hope my answer helped.

    Martha

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  • Momine
    Momine Member Posts: 7,859
    edited November 2014

    Jojo, denosumab/prolia is in addition to an AI. Prolia is not an inhibitor. It is an osteoporosis drug.

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  • Galsal
    Galsal Member Posts: 1,886
    edited November 2014

    All I know is that the RN at the VA showed me the size of the needle (quite wide in diameter) and said the Lupron is thick like Molasses. With the spray, I didn't have any pain or bruising. Beyond that, I've no idea. A can of a spray that freezes where it's aimed on the body was used.

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014

    Thanks so much for all of the info, ladies!  I will keep everyone posted.  I am definitely leaning towards Lupron and Als...My onc just thought it was crazy to lose my sex drive so early BUT I read Tamox can cause that anyways?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2014

    Well...I haven't lost my sex drive. And I was on tamox and now arimidex. It's not a foregone conclusion that you will. It might not be as strong as it was, but it's there. And satisfying, if you get my drift.

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  • edukes1002
    edukes1002 Member Posts: 47
    edited November 2014

    Claireinaz, thank you for your post.  I am so worried about loosing my sex drive.  I have a very happy marriage and that has been causing me some serious stress as I know I will be taking Tamox. 

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  • TaniaE
    TaniaE Member Posts: 92
    edited November 2014

    I initially started to lose my sex drive when I started taking Tamoxifen but I'm putting it more down to the stress and fear of just going through breast cancer and treatment in general. I've been on it for six months now and I'm slowly starting to get it back. Other than that and a few hot flushes I don't seem to have any problems with it.

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  • Momine
    Momine Member Posts: 7,859
    edited November 2014

    Jojo, you definitely need a new onc. Of all the stupid things to say. Yes, shutting off estrogen can obviously affect your sex life. I am not going to sugarcoat that. BUT, as others have said, it is NOT a given, and even if you do experience some problems at first it is NOT permanent necessarily.

    I was pre-meno at DX. First I was thrown into chemical menopause by the chemo, which didn't really affect me much other than making me lose weight. Then I had the ovaries out and went on femara. The first 6 months were challenging, including in the sexual function department, but it was not permanent. By the way, my sex drive never suffered any harm, I just had trouble getting the equipment to work right again.

    I know all this is scary and a lot to take in, but try to get clear info (find another onc, in other words) and resist the temptation to worry about things that may never happen anyway.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2014

    I might say so far I don't need any lubricant either. Sex is not painful. Hoorah!

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  • gemini4
    gemini4 Member Posts: 532
    edited November 2014

    I'm on tamoxifen. Haven't had a period in a year and will be tested in a few months to see if I'm truly in menopause (and switch to an AI). It could be due to a lot of things, but I've been feeling quite chipper sexually in the past six months or so. Since tamoxifen acts like an estrogen in other parts of the body, I haven't had an issue with dryness. Coconut oil makes things a little more fun. ;-)

    I had to have a quick conjugal with my husband (my idea, too) before getting together with my friends last night! The pre-BC version of me wouldn't have done that.

    I hope no one takes this the wrong way, but there are so many scary tamoxifen stories out there that aren't necessarily true. I don't want to diminish anyone's bad experience, but it seems a number of women don't even try it for fear of side effects that may or may not happen. (Disclaimer -- I am aware that there are some women who are truly not candidates for tamoxifen, eg, those at high risk for blood clots and uterine cancer.) The side effects I've felt are run-of-the-mill menopause symptoms (hot flashes, stiff joints that do improve with exercise) that would probably occur whether I was on tamoxifen or not.

    Finally, JoJo, I'm SO glad that it the evidence of mets is not there after all! :-)

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  • funnthesun68
    funnthesun68 Member Posts: 41
    edited November 2014

    Met with oncologist today got result from my oncotype dx which was a 20. She said I won't benefit with chemo, so I started tamoxifen tonight. A lil nervous, but have no choice. Feeling relieved I don't have to do chemo, but I read what all of you are going through with chemo and my heart just aches. I hate this C word. Is anyone being put on tamoxifen for 10 years like I am going to be on?

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014

    So, this is what Dr. Wong says...
    What you have is bone marrow micrometastasis (BMM). My research with Dr Michael Osborne at Strang Cancer Prevention Institute has indicated that BMM involvement does not impact on long-term survival, although other studies indicate otherwise.
    The best thing for you to do is to stay on my herbal regimen. I will continue to enrich your bone marrow with my herbs. You should do well. I am negative on AR as they can cause very serious long-term side effects. There are safer alternatives to AR, such as my herbs.

    But, I am scared...when I research Bone marrow micro mets...prognosis doesn't look great?

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2564844/

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  • Momine
    Momine Member Posts: 7,859
    edited November 2014

    Jojo, what is AR? Do you mean AI - aromatase inhibitor?

    Also, I know you like Dr. Wong and that you feel he has helped you. Bone marrow micro-metastasis is not a great thing from what I have read. The AI can starve those cells so they remain dormant. I would really urge you to get a second opinion from a good oncologist, not the onc you already saw. Getting an opinion commits you to nothing. But I really think you need to have a good discussion with an onc, just to fill out the picture.

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  • First_Wild_Signs
    First_Wild_Signs Member Posts: 23
    edited November 2014


    http://margaret.healthblogs.org/2012/02/15/thymoquinone-from-black-cumin-kills-multiple-myeloma-cells/

    Google: Nigella Sativa, Black Seed, Breast cancer, bone marrow micro metastasis, anti tumor,

    http://www.gaiagarden.com/image/data/HealthInfo/Br...



    Hi,

    I was recently diagnosed with ILC and I am currently waiting for results from bone and ct scans. After an extensive crying jag I decided to begin healing my spirit, mind and body. I've been lurking but wanted to post something that might be of benefit regarding bmm for jojo68 in particular.

    One of the herbs I use is nigella sativa and above you will find some links that might be useful. I did not read all of them but I think if you google the words, breast cancer, bone micro metastasis and nigella sativa you will find something of value to present to Dr. Wong.

    I am currently using functional as well as Chinese medicine along with acupuncture. Just waiting for the scan results to determine which road I will take.

    I have benefitted so much from the amazing women on this site.

    Thanks to you all....

    ~Jayda

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  • LauraW68
    LauraW68 Member Posts: 100
    edited November 2014

    I was told I would be taking Tamoxifen for 10 years as well. I have chemo then radiation to do though.

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014

    Momine,

    Thanks for your feedback.  I guess I shouldn't get hung up on whether this is actually stage 4 or not.  Some research I have read says that this is common and not too serious and other research says prognosis is not good.  I am off to find a second opinion.  I hate this.

    Thanks to everyone for your help!  Hope you all have a safe and blessed Thanksgiving!

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  • jojo68
    jojo68 Member Posts: 881
    edited November 2014

    I wanted to also add that Dr. Wong likes Tamoxifen...says it's more effective and much better for health long term than the inhibitors.  But, I know Tamoxifen may not be as effective for Lobular and I am worried about secondary uterine cancer due to my family history...ugh...tough decisions.

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  • Momine
    Momine Member Posts: 7,859
    edited November 2014

    Jojo, it is NOT stage 4. It is, however, something to take very seriously, in my humble opinion.

    I am not overly fond of dogmatic statements from doctors, like Dr. Wong's preference for tamox. It all depends on your personal profile. Like you, I have a family history of uterine cancer and I have lobular cancer, not ductal. For these and other reasons, I am comfortable with my choice of an AI over tamox.

    Have a good thanksgiving and let us know when you find an oncologist for a second opinion. If you have to travel a bit for the opinion, don't let that put you off.

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