TRIPLE POSITIVE GROUP

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  • Hi Susan (and all).

    My joint pain has gotten progressively worse. the oncologist suggested glucosamine. I've been on it for a few months and it hasn't done anything. Yesterday I took some Zyflamend - it is an herbal anti-inflammatory (Cox2 inhibitor.) In Dr. Horner's book she says it is also anti-cancer. Well, it didn't totally relieve every pain, but I could definitely feel its anti-inflammatory effect, it was like I had taken a couple of Advil.

    and I can relate to the fear of mets. Every ache, pain or lump or bump will always cause anxiety for me, probably forever :-(


    from Memorial Sloan Kettering:

    Zyflamend

    Clinical Summary

    Zyflamend is a formulation containing 10 different herbs. It is marketed as a dietary supplement for healthy inflammation response and normal cardiovascular and joint function (1).

    Preliminary studies suggest that the ingredients in Zyflamend have anti-inflammatory, antiangiogenic, and antiproliferative properties (2). Zyflamend inhibits the proliferation of oral squamous carcinoma (3), pancreatic cancer (4), and melanoma cells in vitro (5). In an animal model, it inhibited the growth of both hormone-sensitive and hormone-insensitive prostate cancer, and reduced the expression of prostate specific antigen (PSA) (6). It can also suppress elevated levels of proinflammatory mediators and aromatase in obese models (7). In a phase I trial in men with prostatic intraepithelial neoplasia, Zyflamend did not cause any serious adverse events, and significant reductions in serum levels of C-reactive protein and nuclear factor-kappa B levels were observed (8). More studies are warranted.

    Zyflamend may potentiate the cytotoxic effects of certain chemotherapeutic agents, including gemcitabine (4), taxol (2), doxorubicin (2), and bicalutamide (9).

    Top

    Purported Uses

    • Antiaging
    • Cancer treatment
    • Inflammation

    Top

    Constituents

    Top

    Mechanism of Action

    Holy basil, turmeric, ginger, green tea, rosemary, hu zhang, Chinese gold thread and Scutellaria inhibit cyclooxygenase-2 (COX-2) activity and thereby reduce inflammation. In vitro studies showed that Zyflamend inhibits inflammatory enzymes, decreases retinoblastoma (Rb) protein phosphorylation (10), and induces apoptosis in human prostate cancer cells (2)(3)(4)(11). It also reduced androgen receptor signaling and enhanced bicalutamide-induced apoptosis (9). In melanoma cells, it induces autophagy and apoptosis sequentially by activating the intrinsic caspase cascade. Cell migration and COX-2 expression were also suppressed (5). In myeloid leukemia cells and lung adenocarcinoma cells, it inhibits osteoclastogenesis and NF-kappa B activation (2). It also inhibits NF-kappa B activation and enhances gemcitabine-induced apoptosis in pancreatic cancer cells (4).

    Both a cellular model of obesity-related inflammation and an obese animal model indicate that Zyflamend blocks proinflammatory mediators and aromatase induction as well as Akt and NF-kB activation. Increased aromatase mRNA levels and mammary gland activity were also partially inhibited (7).

    In a murine xenograft model of prostate cancer, Zyflamend was shown to inhibit androgen-dependent tumor growth and histone deacetylase-5, biomarkers linked to prostate cancer progression (6). It also reduced the number of inflammatory cells, hyperplasia and dysplasia, and tumor incidence and number, and inhibited cell proliferation in an animal model of oral squamous cell carcinoma (3).

  • knmtwins
    knmtwins Posts: 438

    SusanHG123 - I'm still in so much chemo brain, I'm not sure I understood everything, but have you tried http://www.benzobuddies.org/ for the benzo part of your issues? According to a Boston Globe article, they seem to be helpful. Were you on them for a while? The Harvard article seemed to imply the amount of time was relevant. I'm concerend because I took valium to assist with pain after my BMx and have taken some Xanex for MRIs and to sleep before my chemo treatments, but no more than 30 pills of either, so hopefully I'm OK, but I think the psychiatrist put my husband on Ativan to help deal the panic attacks he got with my cancer diagnosis, and he is not good about taking medicine. I'd hate for him to just 'go off it' and there to be an issue.

    I'm not on any hormone treatments yet so can't address those, but I hope what I post might help.

  • I love this group. Thank you to all who replied to my temper tantrum/pity party.

    I have been off Femera for the month to 6-weeks trial. Actually more than once. It heed at the beginning. The last time I could not tell a difference. That was another reason for the bone scan. I am not worried about being addicted to benzo's-I am really careful with all drugs. But the new research-almost another kick towards those of us with chemo brain. Is it Chemo Brain behind door number 3--or is it demential of Alzheimer's type? I have not tried Zyflamend-but will. I am game for anything. I have taken fish oil, kreel oil, and one other type--could not tell a change. And I have tried glucosamine-again no change. I tried the other AIs and tamox. My MO wants me on Femara---if possible.

    I had a woman (smart woman, PhD in some math area) ask me point blank today in Target (with a loud voice) if I got to get new boobs? Yep. My response. Sadly, no. I am not a candidate for reconstruction. And her: Well why not? At that point I made an excuse and left. And seriously wondered why I left my office early. She also asked why I had my name tag on-since everyone knows me anyway. Responded--well that is unlikely. And I put it in the same place every evening--and that place is not Target. But now--everyone knows the status of my boobs-or lack there of. Geez.

    For those of you new to the group--get ready to plug your eyes. We talk about everything. Back in the day of pure toxic waste infusions several of us suffered from the 'rhhoids. Those of us who "shared" talked about pain and bleeding and so on. Anyone of that group starting the cycle again--after a long time of absence? I know it is the return of the 'rhhoids--pain, fresh blood-the usual. But my diet is friendlier to the posterier than it has ever been.

    I chain-watched a new series The Affair over the past few days. Was addicting but not sure I liked it. Also watched Transparent on amazon in about 2 sittings. Whoa. The writing is way good.

    Much love to each.






  • knmtwins
    knmtwins Posts: 438

    SusanHG123 Isn't it amazing what people think is appropriate to talk about on someone else's body? I too have been through the chemo topic, and there we discussed BMs more than I ever did with my child's pediatrician, and I thought that was a lot. I always feel like I say too much as a way of educating others, but realy, let me talk, and if I'm not talking about it, then keep your oppinions to yourself. You have NO IDEA what I'm going through. If your comment is coming from that of past or current experience, as we are on this board, that is different. Kinda goes along with those, who I guess are meaning well, who say, hey, at least you get new perky boobs. Yes, you are right, but that is ME trying to see the glass as half full, I'm allowed, but you... not so much. See Susan, we all have our moments, you are not alone.

  • Mommato3 - I did the heart cath and do not recommend it as a fun activity. It was negative for blockage so that means the LVEF is attributable to herceptin and possibly rads to left breast. I'm taking 2 heart meds now and supposed to monitor my blood pressure for my f/u Jan. 2nd. So far, its crazy up/down.

  • Tomboy
    Tomboy Posts: 2,700

    I am glad it wasn't a blockage, that's great, Blownaway. I am sorry that you have to do medicine for it though. That herceptin is some strong medicine! And rads to the left.. I hope it normalizes soon so you can relax about it!

    Susan HG123, glad to have you back here! I hope the break from the femara gives you some relief. So but (i said butt!) inever really did have the poo problems, but then i am taking pain meds, but even so, my stools are looser than theyve ever been, just in the last week or two. Late starting femara side effect? I don't know... Yeh, femara fun times eh?

  • I finished my Carbo, Taxotere, Herceptin, and Perjeta in November and have been continuing with the Herceptin now every 3 weeks.  Last week, I managed to avoid the crud my family had by going into full haz mat mode and had bilaterally mastectomy with sentinel node biopsy/tissue expanders placed on 12/17.  My right breast and my sentinel nodes on the left and right showed no signs of malignancy, but my tumor on the left which was originally thought to be 8+ cm only shrunk to 6.5 cm so I am feeling discouraged by that.  Have others had neoadjuvent chemo and not had a complete pathological response?  I have read that not getting a complete pathological response increases the likelihood the cancer will return.  Have others read that?  I am also confused on my final path report because it lists the histological type as Mucinous Adenocarcinoma (post chemo) with grade 1 of 3.  Originally, pre chemo, my path report said IDC with mucinous and micropapuillary features with grade 1-2 of 3.  Have others path reports changed like that?  The reports were read by 2 different pathologists.  The surgeon is going to talk to the pathologist about some questions she had but he wasn't in today for her to ask and now with the holidays, it might not be until the first of the year.  Thank you for listening.  I hope everyone has a Merry Christmas!

  • chrissie,

    I had neoadjuvant chemo and the jury is still out as to whether I have had a pathological complete response. While the lump has disappeared and the PET and MRI scans couldn't find any cancer, I will only be able to claim PCR if the pathology report from my upcoming lumpectomy/node removal shows no cancer.

    In any event, I've read that PCR is a better predictor of outcomes in triple negative and HER2-positive/hormone receptor–negative patients. Interestingly, I read that "in patients with low-grade estrogen receptor–positive tumors, it is not predictive." So, if your cancer is low grade, PCR may not be that important.

  • Mommato3
    Mommato3 Posts: 468

    Blownaway, I'm glad there was no blockage. Bummer about needing the meds though. I'll keep my fingers crossed they work quickly so you can get back on Herceptin.

    Chrissie, I agree with Elaine that PCR is a better predictor in triple negative and ER-/Her2+ than ER+/Her2+. The grade of the tumor can also make a difference in how it responds to Chemo. I have read where some tumor characteristics can change after chemo. I'm sure someone will come along that can explain things a little better.

  • rozem
    rozem Posts: 749

    Happy Holidays my dear ladies.  Hope all of you in treatment can enjoy the holidays,  even somewhat ( I  finished chemo dec 16 2011) and wishing all of us a lifetime of NED. 

    Thank you all for your support and guidance, even though im 3 years out I still need you guys!

     


     

  • knmtwins
    knmtwins Posts: 438

    Blown - cheese on toast ( my swearing when the kids are around) - that is just not right! But I'm glad they found it and will 'rest' you for a bit. I've seen other ladies have had this and it fixes itself. My MO always said, it fixes itself by being off the meds very quickly, but my second was fine, so we never had to discuss that much. Good luck to you!

  • Thanks rozem. Happy holidays to you too! I'm 9 days PFC and already feeling like a survivor. :)

  • lago
    lago Posts: 11,653

    chrissie29 I had surgery before chemo. I will never know what kind of response I got from it. I'm 4.5 years NED. The fact that you had no nodes is a good sign though. For all you know the cancer didn't spread and you might not even of needed the chemo. The odds are in your favor that you will beat this. If your cancer is lower grade or mostly lower grade the hormone therapy will probably work better than the chemo.

    Happy Holidays everyone. We are starting another year of living!

  • specialk
    specialk Posts: 9,299

    lago - love the last line of your post!

    Happy holidays to all my TP sisters!

  • ang7894
    ang7894 Posts: 427


    Happy holiday's to all you girls !!!  Love the last line too Lago. 

  • Mommato3
    Mommato3 Posts: 468

    Happy Holidays ladies!!

  • Happy holidays ladies!

    Agree-Lago!

    ~susan

  • Tomboy
    Tomboy Posts: 2,700

    Happy holidays to my trips gals, hope you all have a sweet one!

  • i completed TCH #4 last week (of a planned 6), and really hit the wall this time. My previous SE's had been unpleasant but do-able ... but this time the severe constipation and stomach cramps, segue-ing into explosive diarrhea has knocked me flat. In addition, sleep has become elusive, so I am having lots of time to think about it all. I am considering asking my MO to cut off the TCH at 4, and switch to H-only now. Do you ladies have any thoughts or advice?

  • ashla
    ashla Posts: 1,566

    Armamp95

    For me chemo was not a downhill trajectory..more a roller coaster. I had a rough spot in the middle but my final chemos were manageable .

    The constipation was my biggest problem and with the advice I got here I started the stool softeners early to get in front of the problem .

    It's the steroids..

    Hang in :)

  • ashla
    ashla Posts: 1,566

    "May we dwell in the heart,

    May we be free from suffering,

    May we be healed wherever healing is called for,

    May we be at peace."

    My favorite meditation . Don't think I ever told you where I discovered it.


    http://mobile.nytimes.com/blogs/well/2013/08/08/li...

  • armamp95 -- Did MO suggest/prescribe any meds for the stomach cramps/explosive diarrhea/insomnia? Did they help at all? Mine gave me ativan for sleep, and it worked well for me. During Taxol, I got diarrhea on Days #3 and #4, and I took Immodium. But, I believe that some other ladies in my chemo group took something more high-powered than that. In any case, given that your tumor was small and there was no nodal involvement, four infusions might be fine. (I'm assuming that you got chemo because of your tumor grade.)


    Happy Holidays to all! We'll be having a quiet Christmas here, as one of my sons with autism is having some problems and just needs to be managed until we can meet with a specialist to discuss his meds.

  • My MO had recommended a step up in the constipation/gas remedies (gas-X and Miralax vs. Dulcolax) but I hadn't gotten to town yet to get them when the tide turned. Thankfully, i was out with the dog at that time, so my house and my car were spared! After the initial deluges, the Immodium seems to be working.

    I had been a bit skeptical of the basis for the 6 TCH protocol, but was willing to accept it as long as the SE's were moderate. The sleeplessness i had at first attributed to the stomach cramps, but did not ease last night, so I'll need to call them about that.

    Thanks, ladies.

  • ashla
    ashla Posts: 1,566

    armamp95

    So this was a second BC dx in the opposite breast ? I see you had a mastectomy in 2005. Breast cancer treatment must have been so different then. Did they even test for Her2? Did you know what kind of BC you had? Give it a name? Herceptin hadn't been approved for wide scale use.

    Interested to hear . Hope you are feeling better..

  • lago
    lago Posts: 11,653

    armamp95 I was hit with the severe constipation (stomach cramps are from that) at tx1. Ended up with terrible hemorrhoids from it too. What I found worked for me was the night of chemo I used Metamucil 3X a day as directed on the package (softens stool by bringing water to the crap). I took it till my stools were normal. about 4-5 days. Things did pass slower than normal but I did move. Metamucil can be good for diarrhea too but if you have severe diarrhea you might need to use something else.

    Many of the other treatments for constipation, if you over treat will give you diarrhea. BTW for some reason many of us had issues with tx4. I hit a low point after it too. It's when I was diagnosed with LE. I also had sleep issues since my BMX and through chemo.

    Note that you must drink water with Metamucil and don't take it more than 7 days unless your MD says you can. Metamucil works by softening the stool and making it bulkier. That's why it can work for both conditions and may prevent diarrhea when you treat the constipation.

    ---------------------------------------

    Thanks everyone.

  • Thank you ladies ... I have been doing more reading on the rationale for 4 vs. 6 TCH, or for that matter, on TCH or TH vs. H alone, and increasingly have my sights set on stopping it with 4. I will be open to MO changing my mind, but she will need to be very persuasive!

    Ashla, yes, it was a different cancer in the other breast, and apparently no HER2 tests done at that time. I do not even know for sure if I was ER+/PR+ back then. Presumably yes, since MO put me on Tamox ... but not noted on any of the pathology reports. I discontinued the Tamox after a few months due to SE's (and see a different MO now).

    I am also contemplating my stance on whether to refuse AI's when that time comes ... right now, I am prone to try them unless/until significant SE's show up.

  • ashla
    ashla Posts: 1,566

    armamp95

    Curious , other than mx and tamoxifen , did you have any other treatments the first time?

    Many of us ... Here in this forum who are are on the AI's seem to do pretty well for the first few years and are finding some difficulties a few years out. Not all of us for sure. Some seem to be going great .

  • lago
    lago Posts: 11,653

    BTW I saw my Primary Care yesterday. I told her I am still on the Exemestane. I really want to make it to the 5 years on AIs. The meds she gave me have improved my anxiety. She then fessed up that many of her patients didn't make it . Some had SE so bad that they didn't even last the year. Hmmm, very different than what my MO said.

    I told her that I doubt I would even try the 5 additional years unless there was significant results. I mean if its only for 2% improved with the osteoporosis from the AIs it didn't make sense to me. Her body language seemed to agree (but of course had to add it's my decision I can only stay on Prolia for 3 years till I take a break. Guess I'll have to wait for the results of the study before I can decide.

    She was rather impressed that this coming April will be 4 years on AI.

  • Hello armamp95,

    Sorry you are hitting a rough spot in treatment. I was doing pretty badly by treatment 4 and for my last 2 treatments they lowered the dose to 80% and the side effects were more bearable. Rather than totally stopping, you might want to consider having a reduced dose for your next treatment.... and maybe keep the option of quitting after 5. I just think that down the road if it does come back, at least you will know you did everything that you could to prevent it. Hope you start to feel better soon.

  • Mommato3
    Mommato3 Posts: 468

    Lago, I would guess your MO told you that just so you would continue to take it. Based on this message board, there are a LOT of women who don't make it to 5 years. Joint paint is a serious SE for many of them.