oestrogen negative cancer.......ER-

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  • Sierra
    Sierra Member Posts: 1,638
    edited November 2005
    For Melica:

    Did you ever take prednisone..
    I was given quite a bit
    some years ago for high BP
    and closely monitored
    my face was very moon like
    I never liked being on it

    I am at 5 yrs today
    er-pr- Grade 3..
    .. one node pos.

    Blessings to all here
  • Jessy8933
    Jessy8933 Member Posts: 9
    edited November 2005
    Melica,
    I take Co Q10 once a day - 100 mg. Just wondering why you take it 3 times a day in smaller doses - is there some benefit you've found in your research?
    One year before I found my bc, I had a bad bout with fibroids - and experienced severe bleeding - enough to make me very anemic - took mega doses of iron for a couple of months to restore blood cells (all on doctors orders) - I had never been really sick with anything until then (other than the normal colds and mild flu stuff every now and then) It's always been odd to me that I would have that problem and show up with bc almost one year later. I believe since my immune system was compromised by the anemia, it is entirely possible that it paved the way for bc to develop. I believe its vital to try to keep the immune system strong now.
    Jess
  • Milica
    Milica Member Posts: 43
    edited November 2005
    Sierra
    I was given prednisone in Dec 2003 thru June 2004 for Pertusis. High dose -- believe started around 30 mg daily and each month slowly reduced amount. Then I was given high dose again in Nov 2004 for femoral nerve inflammation - 15 mgs a day. I found out later that 15 mgs a day is considered a very high dose. Took that till April 2005.

    I was diagnosed with BC in early March 2005. And at the same time is when I discovered via research that prednisone suppresses the immune system and interferes with adrenal gland function which controls prostaglandin's. At same time discovered that statins can cause nerve inflammation. And statins can reduce Co Q10. I took myself off of the prednisone -- gradually -- and dumped the Zocor too.

    My onc said I could continue the Zocor because he didn't think it caused my nerve inflammation but the inflammation went away when I stopped using Zocor. Then I asked him "why would I take chemo which can cause nerve inflammation and at the same time take a statin that can cause nerve inflammation?'" He just shrugged and said "we have a lot of patients who do." What kind of answer is that?
    I also quit taking Cellebrex because Cellebrex could cause a heart attack and so could chemo. I asked him same question regarding Cellebrex and got the same answer "we have a lot of patients taking Cellebrex with chemo."

    I am by nature a very cautious person -- and I chose not to listen to the onc on these two drugs while I took chemo. The Zocor is gone and my nerve inflammation is 100% gone. I take Cellebrex only when my arthritis gets really bad. I am treating my arthritis with Omega 3 and Glucosamine/Chondroitin/MSM and it knocks out about 75% of the pain.

    Omega 3 also helps to fight the harmful effects of prostaglandin's which lower immunity and encourage tumor growth (prednisone messes around with prostaglandin's via adrenal glands) and is recommended to help prevent breast cancer. It also helps reduce triglycerides which I have a problem with. Flaxseed has all the good Omega 3 oils. But you have to exercise caution with Omega 3 if you are on blood thinners cause it acts as a blood thinner. Take too much and you'll bruise easily, not clot quickly, internal hemmorage etc.

    My opinion is that I had DCIS which wasn't detected via mammograms -- probably because I have dense breasts -- and the prednisone suppressed my immune system as well as the statins killing off the Co Q10 in my body -- which turned the DCIS, stage 0 to IDC Stage 1. That is my personal opinion. I had a Pet scan in Aug 2004 and no cancer detected. Must have been dormant or in DCIS stage. I think the Zocor I started in Sept 2004 and prednisone started the second time in Nov 2004 caused the cancer to become invasive via a suppressed immune system. That is my opinion.
  • Milica
    Milica Member Posts: 43
    edited November 2005
    Jess 2

    It was recommended to divide dose to avoid minor side effects that may occur: Stomach discomfort,
    nausea and vomiting. No more then 100 mg for each individual dose.

    Should more tumors pop up in me - I will increase my dose to around 400 a day.

    High dosages of CoQ10 can induce restlessness and insomnia. (If taking one dose a day, probaby best to take in morning.)

    The jury 'somewhat'is still out on long term side effects of high dose CoQ10. But --- studies that say 'no toxic effects' greatly outnumber those that say 'toxic effects not known.'

    It is fat soluable. Read that body holds it for "X" number of days (think it was 5) and then releases its storage. Also recommended to take with biggest meal or fatty meal.

    Warnings:
    1. CoQ10 may decrease the effect of warfarin (coumiden - sp??).  If you are taking warfarin, check with your doctor before taking CoQ10.
    2. CoQ10 may lower your blood pressure.  If you are taking medicine to lower your blood pressure, check with your doctor before taking CoQ10.
    3. CoQ10 may prevent damage to the heart caused by a drug called doxorubicin and may also lower its effect.  If you are taking doxorubicin or cancer medicine, check with your doctor before taking CoQ10.

    Cancer:
    A doctor treating a heart patient noticed that his patient's liver cancer disappeared after giving him high doses of CoQ10.

    This was followed by a study in which 100 mg of CoQ10 caused breast cancer tumors to shrink in the women in the study group. After upping the dose to 390 mg per day, the tumors disappeared altogether! European studies have confirmed this in breast and prostate cancer where patients who initially responded to CoQ10 continue to do well. This is a new development and not well understood but is being intensively researched.

    According to some recent research, "cancer may be thought of as a CoQ10 deficiency disease."

    I have seen recommendations for cancer patients to take 400 mg per day - so far I don't have cancer anymore so I am taking 90 mg per day. Patients improve as long as they take it but the problem can come back once it is discontinued.

    Many studies showing that Coenzyme Q10 increases the life expectancy of people afflicted with these forms of Cancer: Breast Cancer, Lung Cancer, Laryngeal Cancer, Pancreatic Cancer, Prostate Cancer. Preliminary research indicates that CoQ10 suppresses the proliferation of Cancer cells and boosts the Immune System chemicals that attack Cancer cells.  

    Coenzyme Q10 greatly enhances the general function of the Immune System.

    A doctor named Folker has done 35 years research on CO Q10 use with breast cancer, immune system, AIDS.

    Also, docs named Langsjoen (safe use of & AIDS) , H.A. Tanner, R.E. (AIDS & immune system) Beyer (free radicals), Linnane (aspects of CO Q10) , Vanfraechem (physical performance), Mellstedt (cancer patients), K. Lockwood (cancer patients), Combs, A. B.(Reduction by coenzyme Q10 of the acute toxicity of adriamycin in mice).

    Brands that do have all the CO Q10 they say they have are: Nature Made, Nature's Bounty, Nutrilite, Target brand, Puritan's Pride, Spring Valley, Sundown, BioSan, Carlson, CVS, Enzymatic Therapy, Olay, and Origin Qsorb. There may be other brands that are 100% accurate but these are the ones I found that were tested and approved.
  • EvieGT
    EvieGT Member Posts: 2
    edited November 2005

    I am er/pr neg but Her2Nu positive. not a happy outlook. Now just finished AC for a recurrence after 8 years. Luckily no mets, juts on the partial mast. scar of 8 years ago and exterior or I might ot have caught it. It grew fast and shrunk fast after 4 courses every other week of AC. Now scheduled for recon and then Taxol/Herceptin for 12 weeks, weekly. Orig. I did lumpectomy, nodes (1+ in 18) and then after about 4 CMF sessions, a spot appeared next to orig. lup, so had partial mast. FInished CMF and had rad. Now with the recurrence, had AC, will have total mast and recon and then the follow up chemo. Feeling VERY lucky. However, CMF was a breeze and AC NOT!

  • Teresa44
    Teresa44 Member Posts: 56
    edited November 2005
    Hi baldbutbitchin,
    How old are you now and when you were first dx 8 years ago?
    I am 44. I was dx 14 months ago. Did A/C, mastectomy, Taxol and then radiation. I am triple negative so I can't do the Herceptin. So you are lucky indeed that you can do the herceptin. I had no positive nodes. My tumor was 6.5cm. By surgery the tumor had disappeared . My onc. calls me his walking miracle. But we both know where the real healing comes from. What an awesome God we have!!!
    Good luck!!!

    God Answers Prayers

    Teresa44
  • trudann
    trudann Member Posts: 4
    edited November 2005

    Debbie, I too am neg on all 3. I wish I could take herceptin. Nurse told me about the low fat diet for ERPR neg BC. Also, I loved the taxol - I felt so good, so did some research - it is from the yew tree, and hazelnuts also have the same chemicals. So, I eat hazelnuts. I had 6 mm agressive tumor found in 2/2002. Did surgery & radiation. Then in 9/2004 started having pain in chest - couldn't sleep on either side, only my back. Also pain in ribs & arm. After tests, no bone mets but met to my sternum. I had great response to Chemo, which I did know was typical of ERneg. Had surgery to remove the tissue where the tumor was, no cancer. I only hope for no more recurrances. But like others, wish there was some other treatment we could do, rather than just hope for the best. thanks to all who posted, it's so comforting to know I am not alone. I am 58, first dx at 54, post menopausal. trudann

  • Teresa44
    Teresa44 Member Posts: 56
    edited November 2005
    Hi Trudann, Interesting about the hazelnuts. I also love them. There is not much for us triple negatives, I wish we could do the herceptin too. I had a 6.5 agressive tumor found in 9-15-04. Did A/C to shrink the tumor. It just disappeared. Had a mastectomy, then Taxol and then radiation. I go for my 3 month check up on Nov. 30. Was your tumor 6mm or 6cm. I may have misunderstood. My tumor was 6.5cm which is very large. Why didn't you have chemo to start with? It has been 10 months since my surgery and I still have some rib pain on that right side. I don't know if it is still from the surgery or from the radiation. I am 44 soon to be 45. I am now in chemopause. I don't worry about too much, I just give all my concerns and worries to the Lord. So I really have a peace about all of this.

    God Answers Prayers

    Teresa44
  • trudann
    trudann Member Posts: 4
    edited November 2005

    Debbie, it was late, I didn't make myself clear. In 2002 Ihad my first BC, 6+cm tumor in right breast-had surgery then radiation. Then in 2/2005 had my second BC diagnosis, it too was a large 6+cm tumor. With my second tumor, it was near my sternum so due to large size had chemo first, then radiation, then surgery. So, I've had 2 surgeries, 2 rounds of radiation and one chemo (adriamyacin, cytotoxin and taxol). I'm 58 now, 54 when I had my first diagnosis. I too had lots of rib pain after my first radiation treatments. In fact, I started a new (too vigorous) exercise program and cracked my rib - it was weakened from the radiation, so said my oncologist. Sounds like we have alot in common. I did not know that erpr negative cancers usually respond well to chemo. I sure did = the cancer was just gone after chemo. Only did the radiation and surgery as extra insurance. I have my own real estate company, so I work alot. My daughter has joined me in the business, so she really had to take over while I was going through my treatments. She has 3 little kids, 3,5 and 7, so now I babysit sometimes while she goes to the office. It's nice, I love my grandkids! trudann

  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2005
    I understood that the more aggressive the tumor (grade3) the better it responds to chemo. I am er neg too and her2 neg but I was told that had nothing to do with it. We just don't have anything else other than chemo and rads. Sometimes I think that they just say that about the chemo working better so we will be comforted. I'm optimistic anyway and hope you all are too.
    ravdeb
  • Teresa44
    Teresa44 Member Posts: 56
    edited November 2005
    Hi Ravdeb and Trudann,

    I have a question. Do most recurrences occur in hormone positive breast cancers or in hormone negative breast cancers? And what if the first bc is positive and the recurrence is negative? Two women in my support group have had this happen to them so I am curious. One thing I do know is that you have to have a positive attitude no matter what.

    God Answers Prayers

    Teresa44
  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2005
    Teresa,
    I don't know the answer to that but it would be interesting to do a bit of internet surfing on this or ask those who have had recurrances if they have learned about this.
    I know that having node negative and clear margins the first time around gives you less of a recurrence risk than if you were positive nodes and unclean margins but that is "less" and nothing is for sure in this stuff.
    Positive attitude and exercise (they go hand in hand, I believe) and a lot of faith in whatever you believe, will certainly help. And support!!! I have the most wonderful support group and learned how many dear friends and family members I really have.
    I know I get nervous, especially when my tumor was aggressive and er neg and her2 neg but I try to put that in the back of my mind when I can (except just after chemo when I get a bit down) but I AM optimistic and I know I will be okay no matter what!!!!
    ravdeb
  • Jessy8933
    Jessy8933 Member Posts: 9
    edited November 2005
    Just wanted to remind everyone of the online conference tonight concerning er/pr neg. breast cancer. I noticed you can go ahead and submit a question if you are unable to tune in.

    Jess
  • bobo557
    bobo557 Member Posts: 3
    edited July 2006
    Hi ladies, I also had IDC 1.5 cm ES&PR- BRCA1+,grade3 angiolymphatic invasion + I was 42 at the time.I had 4 rounds of A/C, 32 radation Rx I had a stroke from the A/C.I never felt great after the chemo but better than I't could have been.I had a lumpectomy,3 nodes removed-,this was 1995 now have IBC and it hurts alot,pain in my head, breast,liver areaR breast @6 O'clock minealso came on quickly my insurance ran out so here I go.Thanks for the thread someplace to vent
  • bobo557
    bobo557 Member Posts: 3
    edited July 2006
    My understanding is neg rec. are more prone to re because they know the estrogen is not feeding it but don't know what is! Wow you ladies have been thru the millI thiught mine was bad enough.
  • beachcottage
    beachcottage Member Posts: 4,688
    edited September 2006
  • b4reel
    b4reel Member Posts: 5
    edited September 2006

    I have DCIS comedo necrosis stage 2-3. I am ER/PR neg and HER2 positive. 36 y.o., premenapausal. Never felt a lump, just went in for 1st routine mammogram and they found it. I'm recovering from bilateral tram w.recons (3 wks out), and after full recovery, I will start rads. That's all the recommended treatment for this. Kinda scarey actually.

  • ritimosa
    ritimosa Member Posts: 17
    edited October 2006

    I was 40 years old when I was dx. My tumor which was 7 cm popped up out of no where. My doctor said it could have been growing for a number of years. It was on my right breast at around 5' o clock. I have no history and I'm a very healthy person. A lot of good it did me. Other then using a little aspertame I have always eaten right and I excercise every day. Now my dd's do not belive me when I say eat your veggies. I never smoked or took bc. I had my children early and started my period when I was 14. Go figure. I did very well though all the chemo. My surgery went well and I'm on my 13th rad treatment with out any problems. I'm so scared of it coming back. How will they know and will they catch it in time ? I feel like I'm a walking time bomb. WE want to move to Florida but I'm not sure if I will recieve the same treatment down there as I have here in Georgia. I had no insurance when I started and then I was lucky enough to get medicade. (sp). My dh wants to move so bad but I'm so scared that I will not be able to get insurance. It's all about money !! That is sad. Thanks for letting me vent. This message board has been my support group and I'm so happy that I was able to get on every day and read your posts. Good luck to all of you !!

  • Sierra
    Sierra Member Posts: 1,638
    edited October 2006
    Hi Gals:

    All listening in today:

    just reading this thread

    I am at 6 3/4 yrs..
    er-pr- one node pos.
    4 ac 4 tax rads.. 5 weeks I believe
    had a 3.5 cm tumour

    What I dont understand is:
    how do you get these lumps so large
    and cant feel them, even at 3.5 mine
    started aching before surgery ..
    mind you.. I really had to feel around for it
    when it was found

    and mammo never caught it
    nor did doctor exam
    just my own gut feeling
    was on hrt and wanted
    to have a surgeon (whom I knew)
    double check me.. out

    Best to all here

    so far, so good..
    no rhyme or reason
    especially with those who
    did not smoke, ate well
    and all the rest of it



    I wonder where the cure is..
    really
    it is so long..in coming


    Meantime, sending out
    best to everyone

    Sierra

    with some sunshine

    )

    I also had the financial concern
    many of you mention
    it really hits hard
    money worries, at the best
    of times..

    stay strong
  • corgigirl
    corgigirl Member Posts: 19
    edited November 2006

    Dx at 64 with er/pr neg but Her2Nu+++. Had lumpectomy and now without any recurrence or genetic testing (but lots of cancer in family)oncologist is suggesting dbl mastectomy should be considered. Wondered if there is some new research driving this? Thought oncologist would say "Yeah" made it through almost a year but instead said "Boo." Surprising development. Will probably do dbl mastectomy as soon as I can get a date for surgery.

  • m_morgan
    m_morgan Member Posts: 15
    edited November 2006
    Everyone mentions A/C and I wonder which chemo drugs A/C refers to? maybe adriamycin and Cyclophosphamid?? aha? let me know!
    I am also ER,PR-, Her2+ and my first chemo drugs were Doxorobicin and cyclophosphamid(Endoxan) followed by 5 injections of neupogen daily.

    Dx 50 days ago. 44 years old, tumors in both breasts. tumor in the left breast 5 cm with no invasion to lymph nodes and the right breast 3 cm with invasion to lymph nodes. both tumors were removed and patology was IDC, grade III. bone scan was clear. also CT scan and MRI showed no cancer in liver, ovaries, and other productive organs. chest X-ray showed no metastasis to the lung. but didn't do lung-CT.
    tumors showed to be ER-, PR- and Her2++
    2 docs recommanded breast conserving, but 3 others suggested me not to risk and have bilateral mastectomy.I did mastectomy a month ago. 3 lymph nodes were involved in the right side. I did my chemo 11 days ago and i am feeling very well now! first round of chemo was piece of cake! thanks to GOD, side effects was not that bad. I hope all side effects went to cancerous cells!:p for me, just a little bit nausea for 3 days and am still a lil tired. but have to eat carefully and have to walk after i eat, so digestion is better. my doc asked me not to sleep or lye down for an hour after I eat.
    will have my next chemo 10 days from now.
  • HollyHopes
    HollyHopes Member Posts: 497
    edited March 2007
    Hello ladies,

    I've mostly been hanging out in the 'Chemo' room because there is a whole group of us who started in March and are supporting one another....ChemoSabe Cruise!

    I am triple neg, Stage II, Grade III IDC with no nodes undergoing dose dense A/C +T followed by rads. Oh yeah - had a lumpectomy on 2/20/07. Dx on 2/7/07.

    There is also a room for Triple Negs I believe. I am worried about recurrence - I am 51. I'm not the healthiest lifestyle bunny on the block - drank vodka tonics, ate junk food...of course...all this has stopped now...eat applesauce and rice mostly. Have only had one tx so far and have diarrhea for 5 days...ugh.

    I've continued to work - need to $$ wise (single and no savings).

    Sending my love and gentle hugs to you all.

    -Holly

    Thank you, all of you, for being there for me and for one another. Did any of you have a PICC line? I have one and get 'funny' feelings in my chest sometimes..
  • jewels20227
    jewels20227 Member Posts: 14
    edited March 2007
    Hello ladies...... Can anyone explain why some people get Taxol instead of Taxotere? I'm currently going on my 5th treatement of Taxotere/Adrimycin/Cytoxan. (Every 3 weeks for a total of 6 treatments). Yup, 2 more to go and man I am counting down! They did not break up my treamtment. I get everything at once... Assuming this is considered dense dose?

    Julia
    DX 11/06 IDC/DCIS Stg 1, grd 3, er/pr neg, HER2 neg
    (Triple negative). Lymphovascular/venous invasion present.
    All lymph nodes negative - Age 45
  • lisaelder1972
    lisaelder1972 Member Posts: 171
    edited March 2007
    My Oncologists opinion was that Taxotere has less side effects than its "cousin" Taxol.Well,I ended up with neuropathy in my legs so bad that I still have to use a cane sometimes and I finished chemo in November.I read an article in JAMA touting Taxotere as "the new gold standard for node positive breast cancer".I had 4 DD treatments and I really thought I would die before I finished it.I am not trying to scare anyone,everyone reacts differently.Congrats on being near the finish line but when I finished my neuropathy stayed.
    Hugs,
    Lisa
  • Sandy65
    Sandy65 Member Posts: 94
    edited April 2013

    Diagnosed_28 Boston,

    I am also er-,PR+. There sure seems to be more of us with these stats showing up lately. When i first came on bco site there were few and far between with these stats. Just wanted to say hello. Hope everyone is doing okay today.

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