TRIPLE POSITIVE GROUP

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  • ashla
    ashla Member Posts: 1,581
    edited October 2016

    Thanks Zoziana! Will have a look. There aren't a lot of no brainer decisions with side effects of Breast cancer treatment. I was holding my own with the bones until I hit a wall with AI's at the 3 year mark.

    Several ladies here( don't recall who) have done Prolia shots but my doctor wasn't enthusiastic. Didn't explain why. . Whe he saw the change to osteoporosis he immediately said bisphosphonates and I balked because everyone I know who tried them had trouble taking them orally or worse. One friend broke two different legs within 3 years.. Clean breaks!

    The MO was pretty confident that infusions were the way to go and I shouldn't wait. I need clearance from my dentist because of the jaw necrosis.

    My MO was also enthusiastic about the data showing bisphosphonates had a bonus of lower recurrence.

    I'll let you all know what happens.

  • ArleneA
    ArleneA Member Posts: 1,309
    edited October 2016

    Well, I am now free! I finished my five years on Arimidex. Was scheduled to begin the Tamoxifen for another five years but I had a scare with my uterine tissue thickening and had a biopsy (negative). Onc said Tamoxifen was to risky but I could stay on the Armiidex but she felt I'd be just fine stopping (but also said, I'm not God). So I'm released. Knuckles have already stopped locking up.

    We talked about the fact that I eat the Turmeric Paste daily which studies show BLOCKS hormones (not stops production as the ALS do) so she said keep eating it and be healthy.

    A bit sad to have said goodbye after all these years. She also said that after five years, she doesn't test the CA-27-29.

  • Zoziana
    Zoziana Member Posts: 114
    edited October 2016

    Glad I could help Ashla!. This post is also questions about tamo versus AI drugs, and AI drug side effects and management via complementary methods. I had a wham-bam rather unpleasant first month starting generic Femara.

    I have some questions for any who know, and also would like advice on what to ask my MO next week about side effect managment and the differences in risk reduction between Femara and tamo, (I listed my quests. below) and also on what to expect with side effects for me personally. If anyone has any insights, I would appreciate it. Posting this in the Femara and Triple Positive forums.

    If you start out the gate with lots and lots of serious joint pain (head to toe), does it go away later? Did anyone try acupuncture? I know my med center has a clinical study going for acupuncture and AI joint pain but I don't know if I will qualify, etc. Also, I want something that works, not a placebo!

    I started Femara (a generic though) Sept. 8, and within 2 weeks,day by day, with things getting progressively worse, I had serious joint pain in all joints from toes, ankles, knees, hips, hands , fingers etc. Stiffness was bad in the morning. I also had a terrible headache and muscle pain. I had started back to hiking and was going to yoga, but the pain was so bad I really didn't feel like going at all--and walking and hiking are favorite activities of mine! I also felt lethargic and had no energy, and my cognition seemed sluggish.But, I was also dealing with a long-term sinus infection, so it is hard to sort.

    At 4 weeks on Femara I was taken off because of the persistent sinus infection (since June, when on chemo!) that I can't get rid of, and I'd at the 2 week Femara point I had also been put on a different, very broad spectrum strong antibiotic and they wanted to just give my body a rest and try to sort out what was happening. But, given that the joint aches started before the strong antibiotic( I only had that one during the last 2 weeks of the Femara), I am confident it was the Femara. Hot flashes were also intense--at least once an hour, 24-7 . And, within days of stopping Femara, the joint aches all went away; by a week out off Femara, they are gone completely. The sinus infection is still present, though improving I think. My headache is still present but a lot better; I think I had "two" headaches: the one I've had from teh sinus infection for some time, and a "Femara" headache on top of it.

    I am wondering if switching to Tamo is a better choice for me. I'm talking to my MO next week. My doctor doesn't switch better AI drugs, just classes of estrogen blockers. I do have genes which promote growth for colon, head and neck and breast cancer, and I've had colon polyps on 2 occasions and a parotid gland pre-cancerous tumour and of course BC, so the genes are active in me and despite a healthy lifestyle (other than extreme stress at times, which I am working on to learn to manage better), I apparently am a growthy person. Also have an IGF growth factor gene so am now eating vegan. I am not sure how much my MO is weighing these genes, as I tested privately for them . But I will present them in writing to her. It just hasn't been front and foremost to date. I want the AI or tamo drugs, but also want a drug that I can sustain.

    These are my questions (for my MO and/or if any of you know). Are there are others I should ask? If anyone knows, I would appreciate help. Or, if there is another better forum in which I should post?

    1) What is recurrence risk for HER 2+ women without metastatic disease without use of hormone blockers? 2) What is difference of my overall risk of recurrence, of Tamo versus an AI? 3) What is risk of uterine etc cancer due to Tamo in post-menopausal women? (I have an ovarian cyst and one ovary removed years ago.) 4) What complementary treatments have helped people, besides keeping up exercise? Acupuncture? Supplements ? (if so, which ones--I don't know if she will know, and I already use B vitamins, D, K, alpho lipoic, co-Q-10, zinc, green tea, vit C, Omega 3); meditation and yoga (doing that already). I have CBD oil I was using during chemo and am not averse to using that if it would help manage SEs.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    zoziana - your joint pain may dissipate after a period of adjustment, but it may not. If it persists, I would switch to another maker of generic Femara - I found a big difference between generic makers, am currently on Roxane because it has the fewest additives and fillers. Actually less than the brand name, but I have also had success on Teva, less so on Mylan. There is some thought about cross-talk between Tamoxifen and Her2+, but still other studies have seen no difference between Tamoxifen patients whether Her2+ or not. Also, the question of how effectively you metabolize Tamoxifen may be important related to Her2+. I proposed switching to Tamoxifen after 5 years on AI drugs and my MO said no go, I needed to stay on an AI or stop altogether. See links:

    http://www.cancernetwork.com/articles/preventive-effects-tamoxifen-vary-her2-level

    http://jnci.oxfordjournals.org/content/92/5/366.long

    https://community.breastcancer.org/forum/80/topics/737665

    As far as your questions at the end of your post, the PREDICT site with a calculator may be helpful as you can plug in different treatment data and get results and it does factor in Her2+ treatment. PREDICT is a UK site so you have to put your tumor size into it as millimeters - so multiply your tumor size by 10. This tool does suss out benefit of hormonal therapy, chemotherapy and Herceptin. Cancermath also has a calculator but it is an older model that does not factor in Her2+ treatment. I like the pictogram version of the results - easier to see. Here are those links:

    http://www.predict.nhs.uk/predict_v2.0.html

    http://lifemath.net/cancer/breastcancer/therapy/index.php

    As far as any other complementary things you can do to lessen the anti-hormonal side effects, and/or improve your odds - I found a big difference when I followed an anti-inflammatory diet - less joint pain, fewer hot flashes, more energy, and I lost weight. I used this one - but I will add the disclaimer that this is a fairly extreme diet and it can be difficult to follow.

    http://www.chewfo.com/diets/the-virgin-diet-by-jj-virgin-2012-what-to-eat-and-foods-to-avoid-food-list/

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited October 2016

    rozem and fighter girl just to provide an alternate viewpoint, my GYN and my OB refused to even discuss having my ovaries out. They said there were way too many benefits for keeping them in. I am on Lupron to suppress them, I get a shot every three months. Then I take tamox.

    In other news, the lump in my contralatersl arm looks like a sebaceous cyst and getting smaller. So that is good news!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016
  • rozem
    rozem Member Posts: 1,375
    edited October 2016

    Tresjoli2 great news on the lump being a cyst whew!!!

    Agree that the ovaries provide many benefits which is why I keep pushing this surgery off. But shutting down and removal do the same thing albeit one is permanent. My MO said having too much estrogen is never a good idea. If i can never stop the shots and wake up the ovaries im not sure what benefit they provide Confusing

  • rozem
    rozem Member Posts: 1,375
    edited October 2016

    Do the ovaries provide benefit when in permanent menopause? Could this be a factor?

  • Zoziana
    Zoziana Member Posts: 114
    edited October 2016

    Special K: Thank you very much for the reply. This is exactly what I needed to know. I will dig into those studies and article tomorrow. Good info about the various generics. I know that can make a difference with all drugs; for a family member with a non-cancer chronic disease, the doctor allows his patients only the brand name and one specific generic, because clinical studies actually showed a deceased efficacy with other generics. So I suppose the precise makeup of the drug may, but not always, make a difference.


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Awesome news, Tresjoli! My OB/Gyn wasn't too keen on ovary removal either. So, I'm still doing my monthly shot. However, my OB/Gyn has retired, and I'll be seeing his partner soon. (Old OB/Gyn: "I have bad news and good news for you. The bad news: I'm retiring. The good news: you'll now be seen by my partner, who is younger and better looking.") Maybe, New OB/Gyn will have other ideas.

  • Heathet
    Heathet Member Posts: 257
    edited October 2016

    On Oct 7th I had my first dose of Herceptin only. I noticed the following day my knee was really aching - joint pain. It was really achy and stiff for about 3 days and then went away. I noticed today it seems to have flared up again. Anyone else notice this with Herceptin and any good recommendations to ease the stiffiness and pain?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    heather - how long was your H only infusion?

  • Heathet
    Heathet Member Posts: 257
    edited October 2016

    They did it in 30 minutes. It I'm going to request an hour for the next one.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    heathet - I had H with chemo at 90 minutes, no issues with pain. First H only they did at 30 minutes - which is within infusion guidelines. I had intractable hip and leg pain, asked to slow the infusion back to 90 minutes as it was during chemo and had no further pain issues. It is certainly worth trying a slower infusion, it has helped a lot of others. Let us know how it goes!

  • rleepac
    rleepac Member Posts: 755
    edited October 2016

    SpecialK - thanks again for awesome links. I found the first one very interesting as I was a very strong HER2+ and I hate Tamoxifen so I'm going to send this to my MO and ask his opinion on it.

    Heather - asking for a 90 minute infusion was key for me. I still had some SEs but not nearly as many or as severe if I made the infusion longer.

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    I wanted to say hi. I am new to the group.

    I am triple positive and was directed towards this group. I am being treated in Stockholm, Sweden. I am just now learning more about my cancer because of simple fear trying to take one step at a time. It has been so much to handle and take in since I found out this summer. I immediately started on chemo (FEC) to later move on to the treatment for HER2+ with taxol, I am getting my second dose of perception (12 doses) and perjeta (3 doses) next week.

    It helped to try to fill in the signature on this website and find out more about my diagnosis in the meantime.

    There is no place where they ask for Ki67 score, mine was 30%, or does anyone know? I also do not understand the percentage, mine is ER+ 100% and PR+ 85%. It sounds like high numbers..

    My problem now is that my tumor has not yet shrunk so now I am worried about that. What happens then?

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    Heathet, i am ER+ 100% and you ER+ 95% ..this is something i do not understand, the percentage...can someone explain please?

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    kattis - the percentage is calculated by the pathologist who is looking at 100 cells under the microscope after staining and counting how many out of those 100 have an estrogen receptor. In your case all of the cells had estrogen receptors and 85 of yours had progesterone receptors.

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    For some reason it does not sound good SpecialK...or maybe I am wrong?

  • debiann
    debiann Member Posts: 1,200
    edited October 2016

    Kattis, actually being estrogen positive is not a bag thing, it means that estrogen fuels your cancer and removing estrogen can stop the cancer from recurring. There are treatments for this, although some don't like the side effects of the treatment. Nonetheless, highly effective treatments exist. The alternative to being estrogen positive would be estrogen negative, triple negative if you didn't also have the her2+, (which also has targeted treatments - perjeta & herceptin). So gals who are triple negative have fewer treatment options available.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Kattis,

    I was 95%ER+, 95%PR+. As a result, my oncologist has prescribed Aromasin, which I tolerate fairly well. But, other possibilities are Tamoxifen, Arimidex, and Femara. I'm happy that I can do something to prevent recurrence, so I don't mind taking hormonal therapy. Hope you had a good meeting with your oncologist!

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    Hi ElaineTherese,

    Yes my meeting was good. I found out a lot more, I am triple positive etc but as you embark on this cancer journey there is so much information and so many new terms to learn that it takes awhile for it to sink in, or perhaps I just do not want it to sink in..:)

    I am still scared of any scans of my body but since the nodes were negative I understand there is only a 5% chance the cancer has spread threw the blood instead of the lymph. It is not normal practice to scan if the nodes are clear.

    My ONC told me that he has seen patients with small tumors that has been deadly and very large ones that is reacting well to treatment and survive many many years. In my case it is just to early to say if the treatments will work. So far my tumor has not shrunk and that scares me a lot at the moment. I hope for other news soon as he will send me for another mammogram to check the status. I was on FEC 3 rounds (every three weeks) until my treatment recently changed to taxol, herceptin and perjeta. He also told me that there is total submission in about 25-30% of the patients, I am hoping I will be in that group..:)

    There is a lot of hope, you just got to keep reminding yourself just that sometimes.

    When my Onc is doing his exams of my breast he always says - I think it has soften a bit.. He is seeing many many patients so I suspect he is saying this to everyone to keep moving forward with hope instead of despear...

    Thank you for your reply. Are you taking the hormonal treatment as pills? or? and is it during the hercaptin treatment?

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    Thank you Debiann,

    You just gave me a much needed dose of hope..I guess after the year of hercaptin the battle will continue with other drugs for the hormonal treatment, or do you get them during the same time?

  • debiann
    debiann Member Posts: 1,200
    edited October 2016

    I think many begin the hormonal treatment while still on Herceptin, after the other chemos end. If you have other problems going on or difficulty tolerating the Herceptin, they may wait. I had an MX immediately following my first 6 chemos. I started Arimidex a couple weeks after surgery while still on Herceptin. I haven't had too many problems with Arimidex. Joint pain in the beginning, but that has subsided. I've had some more bone loss and with be discussing prolia shots with my onc next month.

    I do however have a new condition, chronic venous insufficiency. Compression socks are helping. Anyone else have this? Is is an SE of AI's or the other cancer tx? Can it be an indication of a recurrence? The fun just never seems to end.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    kattis - I wanted to add that patients with higher expressing levels of hormonal receptors have a statistical survival advantage, particularly over those with low levels of estrogen measured at less than 10%, or those with high ER+ but low PR+. That yours are both at higher levels means that endocrine therapy has a better chance of providing you benefit.

    http://www.lbbc.org/news-opinion/should-low-estrogen-receptor-status-be-considered-positive

    http://scienceblog.cancerresearchuk.org/2015/07/08/solving-a-breast-cancer-mystery-why-do-double-positive-women-do-better/

    Also, I had surgery first, then chemo, then a month later started endocrine therapy while I was still on Herceptin only infusions. I think it is also common, particularly in higher estrogen receptor expressing patients to see more response to chemo once the targeted therapies (Herceptin, Perjeta) have been added in, than when it is chemotherapeutic agents only.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited October 2016

    Hi Kattis!

    Keep your chin up; I agree with Special K that you may see more response to the Taxol + Herceptin + Perjeta infusions. I began my Aromasin (which is a pill) during radiation and while I was getting treated with Herceptin alone. I take it every day in the morning, after I've eaten something. Hope your tumor starts to visibly shrink soon!

  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2016

    Oh ladies, thank you so much for your replies and links...it warms my heart..who knew that it could be positive to be triple positive..:) joking aside, since I am thinking my tumor is growing, perhaps because I can really feel and see it now, being aware, it might be my imagination but my ONC is sending me for a mammogram on the 31st of Oct to make sure.

    Fear is such a huge thing in all of this. Again thank you all. Monday is only my second injections of herceptin and perjeta so I hopefully have a long way to go.

  • jpr143
    jpr143 Member Posts: 26
    edited October 2016

    Rozem,

    I've been having terrible pain in my shoulder and arm and wondered if radiation was the culprit. You mentioned breaking down the scar tissue. How do you do that? Physical therapy? Massage?

    Thanks

  • rozem
    rozem Member Posts: 1,375
    edited October 2016

    hi jpr143

    What helped me immensely was going to see a Physiatrist- this doc specializes in Muscle Skeletal issues. The issue with rades is it tightens up and creates a lot of scar tissue that needs to be broken down She referred me to a massage therapist that specializes in after surgery scar tissue. Stretching excercises for maintence are so important. I can't tell you how much better I felt after a few sessions and keeping up with my stretches at home. PM me if you would like more details

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited October 2016

    hello ladies. Checking in tonight because I am feeling a little bit blue. I hit my one year anniversary of being on tamoxifen.

    I don't know..I miss my estrogen. My feet hurt so much, and my elbows, and my joints creak and pop. I'm 41! I feel 90. And something about hitting that anniversary. I'm not sure I can hang in there like this for 9 more years

    Sigh. Sorry. I had been doing so well but am throwing myself a bit of a pity party at the moment.

    Thanks for listening...


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