TRIPLE POSITIVE GROUP

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    slg - note that the link I posted shows millimeters so that would be .1cm to .6cm. Also, some of those with smaller Her2+ masses elected to do 12 Taxol with Herceptin, then continuing Herceptin for the year. This is thought to be a bit more gentle on the system and appropriate for a smaller mass. Prior to starting she would need a echocardiogram or MUGA scan to determine her ejection fraction (pumping efficiency) of her heart and whether or not it is at the level needed to commence, as Herceptin can be cardiotoxic. There is another thread with ladies who are receiving Herceptin only with no chemo, here is the link:


    http://community.breastcancer.org/forum/80/topic/809583?page=1#post_3694955

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  • slg76
    slg76 Member Posts: 177
    edited November 2013


    Thank you! She has high blood pressure and restrictive airway disease. I know, not ideal for starting chemo.

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  • SusanHG123
    SusanHG123 Member Posts: 414
    edited November 2013


    Twinmamaheather. You and your children are way too cute! I am a nurse. For the days after diagnosis leading to chemo (a very short time-my tumor went from finger tip to 6x6 in about 15 days) I was awake researching everything I could find and calling every place that would answer the phone. Spent hours with my surgeon and my medical oncologist and my oncology nurses. Each day more information was available. I finally sat down with my docs and did a pro/con list specific for me, my type of weird aggressive cancer, signed the dotted line, and started. From day of 1st mammogram to day of 1st chemo was 31 days-20 longer than i wanted. I also wanted everything finished in 3 months-1st chemo to final touch up of cute new breasts. Best plans. Go with what is best for you. Listed to your physicians. If you are not comfortable with them-interview another group. You need to trust your docs and chemo nurses.


    Bren the first time I went without my scarves or hats (I couldn't do the wigs due to itching) I sat in my car for the longest time. My hair fell out 3 times. I was on the 4th regrowth, almost my natural color, but curly. Almost 3/4th to 1 1/2" long in places. Getting hot in NM and I was done with a hot sweaty head. So off I went. My faculty and staff were wonderful! Cheered and cried with me.


    PBrain-have had friends "pat" my hair-almost like "Pat The Bunny". It feels so darn good! Thanks for the recommendation!


    Am finally approved to complete more of the dental work-fillings that fell out from Taxol. Anyone else experience this? Think I had 4 fillings and a crown.


    Do you think chemo brain goes away? I am still struggling with aspects. I have to write everything down. Going to my office tomorrow to work when the building will be quiet. In hopes the lack of distraction will decrease chemo brain


    Slep well

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  • momx2
    momx2 Member Posts: 109
    edited November 2013


    Twinmama, absolutely adorable the three of you !


    I would go with my gut , first instinct as what to do bmx vs lumpectomy .


    My gut feeling was to do bmx , bs talked me into lumpectomy which had to be re-excised 2x and still no clear margins . Standard is 2 mm from border she got 1 mm , and also kept finding more idc that wasnt picked up by mammo , u/s , and mri with contrast . Time was wasted so I had to start chemo and still have bmx after chemo . I have extremely dense breast tissue and I guess that made it difficult .


    Anyway in anything I decide , its always been that gut feeling thats been right .


    Whatever you decide I wish you luck and will be praying for you that all goes well . Dont let fear make the decision for you .


    {{{{hugs}}}}

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited November 2013


    SusanH, My chemo brain is starting to go away, at least a bit. I can now remember the word I need after a silence of a few seconds instead of just not connecting with it. Still sound stupid but not quite as bad. I do take B12 and CoQ 10 supplements. Also I can play the word game where you describe or list things about the word till it comes to me! LOL. I still get a bit dizzy and nauseaous when I turn my head too fast though. And I write things down too AND NOW I CAN FIND THAT D*MN LIST! LOL I hope your brain gets better even faster than mine. I seem to be on the slow side.

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  • Bren58
    Bren58 Member Posts: 1,048
    edited November 2013


    Add me to the list of you who can't remember the right word to finish a thought. I also make lists for everything, and I have wasted plenty of time looking for the list I thought I put in my purse before I left for the grocery store. And of course without the list I can't remember half the items on it!

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited November 2013

    Oh my...I can't remember anything...chemo brain forever...ugh

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  • Shasha10
    Shasha10 Member Posts: 297
    edited November 2013


    Hi Everyone just a quick question. Just started my first actonel monthly dosage. Normally not too many se, but was very tired the first day and loss of appetite. ( pity since I was attending my friend's daughter bridal shower & the food looked great) anyone have any input. I'm calling my mo tomorrow too make sure it's nothing. Thx

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  • Pbrain
    Pbrain Member Posts: 863
    edited November 2013


    Shasha, I love your new picture! I don't think everyone realizes it, but bisphosphonates are soap. So yeap, they can make it so you don't feel real good in the belly. Talk to your MO because if your side effects are bad, they can do IV administration (annually, bi-annually, every few months--I can't keep up with the bone drugs anymore because there are so many options now). My company makes Boniva, which is a bisphosphonate pill, but you only take it once a month.


    Keep us posted :-) I know I'm going to be on those in a year or two.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2013

    Shasha:  Adorable picture.  My MO just took me off Boniva until my July dexa.  It was killing my stomach.  If I have to go back on something, it won't be Boniva (for osteopenia).  Actonel had the same effect.  The only one that was great for me was the Evista, the one that supposedly keeps you from getting breast cancer....well, that didn't work.  But you can't take it with the Arimidex.  She has another one in mind that is via infusion basically twice a year so we'll see.  NOW, if you just started it, the first few doses are the worst and then your body settles down with it, normally!

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  • Shasha10
    Shasha10 Member Posts: 297
    edited November 2013


    thx so much Pbrain. It's so hard to keep up. I'm on so many new drugs (after chemo) waiting for the shoe to drop with se. So far pretty lucky w the se, but never sure what it might be. If this is the worst I'll take it. But will definatey call my mo tomorrow and check it out. I knew I could count on this board for info.


    Thx for mentioning the pic. I also felt it was time to update and accept who I am. (Especially here) Every time someone says I love your new cut, I think what are they kidding??? But dh tells me it looks really good.

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  • lago
    lago Member Posts: 17,186
    edited November 2013


    Twinmamaheather This is a personal decision. I knew that I would have to get ride of one from the start. Small breast/big tumor in posterior region. I wanted them both off since I was doing regular mammos, had a scar and they still didn't see this tumor till I came in with bloody nipple discharge in my very dense breasts. They don't leave breast tissue on purpose but they can't possibility take all the breast tissue out. You still have some risk of a new breast cancer but it is greatly reduced just because you have much less tissue. That being said most BS don't want to remove healthy tissue. In my case I had LCIS in the good breast which increases my risk of getting it again. Standard care in the case of having breast cancer in one breast and LCIS in the other is to remove both. Also if you have a family history, BRCA positive are some of the reasons to have an BMX (including removing one breast prophylacticly. Your BS should have discussed this with you. Call tomorrow and have this discussion. It will make you feel better. And don't feel you can't change your mind.


    slg76 I thought chemo wasn't recommended if you tumor was under .5cm for HER2+ but I'm not sure. I highly recommend she see at least one oncologist that works with lots of HER2+ patients


    Sasha keep me posted. I have IBS, have had gerd, was on 2 types of meds on chemo because of heart burn. I was diagnosed with osteoporosis a couple of weeks ago. Won't see the endocrinologist till January.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    I am on Prolia, a monoclonal antibody drug, as Herceptin is. Works a bit differently from bisphosphonates which believe coat the bone to make it stronger. Apparently as we age there is a normal process of old bone removal and new bone formation. Sometimes in menopausal women this process speeds up and the old bone is removed faster than the new bone formation can keep up with. Prolia slows this process - I was osteopenic prior to BC dx and teetering on the brink of osteoporosis after chemo and six months of Femara, but have had four injections of Prolia now (every 6 months) and just had a bone density done about a month or so ago and am now measuring normal at every measurement point. Virtually no side effects from Prolia so far - tried Actonel and Boniva years ago and could not tolerate any of them due to reflux surgery in '95.

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  • lago
    lago Member Posts: 17,186
    edited November 2013


    Thanks for letting me know SpecialK. All I know is I don't want to be on this crap forever. I'm really getting mad at this ESD. My feet seem to be sore/tired most of the day now too. I like to walk

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  • Lynn1234
    Lynn1234 Member Posts: 169
    edited November 2013


    I've got a respiratory infection...and my Herceptin treatment is scheduled for tomorrow. Does anyone know if I can still get my treatment? I had a fever about 3 days ago, now I'm coughing like crazy with green stuff too.

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  • ArleneA
    ArleneA Member Posts: 1,309
    edited November 2013

    Ah yes SpecialK, Prolia is what my onco wants me on after the next Dexa.  She says she's not heard of any se's from it.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    arlene and lago - I am so happy with the progress I made on Prolia - I honestly did not expect to have that much improvement that quickly. There is some thought that Prolia has less fracture rate than bisphosphonates as with those drugs the coated bones lose some elasticity and can actually fracture more easily - which seems counterintuitive, right? Because Prolia is targeting the old bone removal mechanism only is seems to have a lower fracture rate so far. Both drugs have the ONJ risk, it is a very small percentage and this is generally when it is given in high doses for bone cancer, or in folks who have extensive dental issues involving jaw surgery or implants - I know we have implants - but they are not in our mouths, lol! I was advised to time visits to the dentist for any work, like routine fillings, for the halfway point between injections. The injections themselves are sub-cutaneous - much like Neulasta was - easy peasy - every six months.


    lynn - not sure - can you call your onc's office today and ask them? I never had any illness during Herceptin, so can't advise, but I would hate to see you make the trip over and be turned away.

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  • smo23915
    smo23915 Member Posts: 165
    edited November 2013


    Thought you all might find this an interesting article. Sharon


    http://www.huffingtonpost.com/keith-i-block-md/cancer-prevention_b_654700.html

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  • Virginger
    Virginger Member Posts: 111
    edited November 2013


    Not sure if it's been posted Our new Triple Negative Breast Cancer group, in Charlotte, North Carolina had a video-conference with the esteemed Dr. Lisa Carey on October 22, 2013. Dr. Carey is The Preyer Distinguished Professor In Breast Cancer Research, as well as the Division Chief of Hematology/Oncology at the University of North Carolina at Chapel Hill and the Physician-in-Chief of the NC Cancer Hospital.










    http://unccn.mediasite.mcnc.org/mcnc/Play/0fec46f2fb934598aec276a5564fe3921d?catalog=b90d0646-c99f-4ca8-9d91-294d41d66af9

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  • Bren58
    Bren58 Member Posts: 1,048
    edited November 2013


    I have a question for those that have finished tx. My WBC was 3.3 last week when I had my final Herceptin. PA says that it is from chemo, but I finished chemo mid March, 6 1/2 months ago. Is this normal??? I don't have a lot of faith in the PA anyway, she & I aren't on the best of terms. I ask too many questions and she usually does not have the answers.

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  • GrandmaV
    GrandmaV Member Posts: 1,267
    edited November 2013


    Bren, As long as I was on Herceptin my white counts stayed on the low side of normal. About 4 months after my final Herceptin they were much better, about mid range. I think Herceptin hinders the recovery from chemo.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited November 2013


    my Wbcs were low but I got Nueslasta every tx. However my Rbcs were so low I needed tx twice.

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  • lago
    lago Member Posts: 17,186
    edited November 2013


    I had a blood test the August after I finished chemo and just before I finished Herceptin. My white counts were low but my PCP said that was normal because of treatment. I had the feeling it was because of Herceptin as well as chemo. It takes a while before you body bounces back. My normal hair texture just started to get back to normal about 12-18 months PFC.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    Bren - Here are the SEs from the Herceptin site, sorry I can't get rid of the crazy font things:
    • Low white blood cell counts
    • Diarrhea
    • Feeling tired
    • Low red blood cell counts
    • Swelling of the mouth lining
    • Weight loss
    • Upper respiratory tract infections
    • Fever
    • Low platelet counts
    • Swelling of the mucous membranes
    • Swelling of the nose and throat
    • Change in taste
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  • Bren58
    Bren58 Member Posts: 1,048
    edited November 2013


    Thanks for all the info. My blood counts were really good all summer (between 4.5 and 7.6) until this last round. Good to know it probably is because of the Herceptin. Isn't it sad thought that I trust you alls input more than I trust the PA!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    Bren - I think we work harder for each other, in terms of finding info and reassuring each other with common experience, because we care more than someone in the doc's office who sees a million patients, and who thinks all you want to hear is that everything will be fine, or that it is nothing.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited November 2013


    specialk- aint it the truth!

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  • Bren58
    Bren58 Member Posts: 1,048
    edited November 2013


    You are right SpecialK, and I am so grateful for everyone on this board that shares their encouragement, wisdom and humor.

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  • McKatherine
    McKatherine Member Posts: 300
    edited November 2013


    my WBC and Rbc are still low, too. Curious to see how they go up when I finish Herceptin in Feb.


    I had my last radiation boost yesterday - and although I had planned a low-key week to recover, I would have preferred doing it without a cold. :(


    I promise to keep my germs to myself, though. ;)



    oh - and I haven't started my tamoxifen yet - although my mo told me a few weeks ago I could go ahead. Now I'm thinking I want to get past this cold before I start so I don't confuse SE.


    I'm taking a probiotic at night, and Vit D once every three days or so. Better to do the tamoxifen in the morning or evening?

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  • McKatherine
    McKatherine Member Posts: 300
    edited November 2013


    oh - and I haven't started my tamoxifen yet - although my mo told me a few weeks ago I could go ahead. Now I'm thinking I want to get past this cold before I start so I don't confuse SE.


    I'm taking a probiotic at night, and Vit D once every three days or so. Better to do the tamoxifen in the morning or evening?

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