Take our poll: How does Breast Cancer Awareness Month make you feel?
Donate to Breastcancer.org when you checkout at Walgreens in October. Learn more about our Walgreens collaboration.
Join us for a Special Meetup: The Benefits of Exercise for Anyone With Breast Cancer, Oct. 16, 2024 at 2pm ET. Learn more and register here.

TRIPLE POSITIVE GROUP

1…464465467469470…1336

Comments

  • PixieNel
    PixieNel Member Posts: 48

    Hi there !

    My final chemo shot was yesterday.

    Aside from herceptin infusions, what are there to expect after ? How many follow-ups? wny more procedures to be done? 

    No: I won't undergo any radiation.

    Thx in advance for the incoming replies

  • camillegal
    camillegal Member Posts: 15,711

    PixieNel Hi--I'm the wrong person for this, but all I know is u must have more herceptin to take whether it's weekly or 4 weeks depending on u'r Dr. So I would think that weould be next in order to finish up  with IV's and no rads there would be some king of cancer med u will take for so many ears. That's really all I know.

    Rozem I hae heard that women have a lot of problems with this procedure, with pain in a lot of areas and sometimes more surgeries. I'm not trying to scare u I'm just trying to tell u it doesn't always mean mets. It must be each woman 's body takes it all differently. I truly hope u'r pain subsides and u find relief soon.

  • Katharine2411
    Katharine2411 Member Posts: 25

    Good news! Finished six months of chemo yesterday! Wahoo! Now onto radiation and still have herceptin until the fall and tamofloxan (can't spell that darn drug) ... But no more chemo! My hair will grow back Monday right? LOL! Have a lot of nail pain ... Any tips? Going to Target today to get moisturizer. I keep polish on them because they're brown and two are white halfway down. Now that done hoping they will improve ...

  • swimmom01
    swimmom01 Member Posts: 32

    Morning ladies, I need some advice. I follow the conversations as closely as I can but don't post much, you all have way more knowledge than me. I was pretty lucky thru my chemo fairly standard SE. Had last TCH 10/31 and 2nd recon surgery 12/2. Now on herceptin only and tamoxifen. The past few weeksI have been experiencing the tingling in the fingers and hands, not to bad. But the last couple of nights it's like someone is pouring hot lava on my entire arms! I can feel it start to disapate to start again, it brought me to tears last night and I have a high threshold for pain. I didn't think herceptin caused neuropathy? Or can I still be feeling the effects of Taxotere this far out. Will it get better or worse? It's difficult enough to get rest with the wonderful hot flashes but now to add this to the mix is too much.

  • shore1
    shore1 Member Posts: 591

    Katharine & Pixie - congrats on last chemo! Feb. 1 will be a year since my last chemo, and I finished herceptin in Nov. 2012. My nails are still not great, but are improving. I wear gloves whenever I so much as rinse a dish, use good cuticle cream, and keep them filed short and use a dark color nail polish, and use a non-acetone nail polish removed.  Biotin might also help. I'm hoping they continue to improve with time. Pixie, follow-up and any tests post-chemo seem to vary so much - you will see on this board a wide range of what MO's recommend and will do.

    Rozem, as everyone has said, this whole reconstruction phase has been so awful for you, I'm sorry your having pain and frustration with it. How are you doing with the Lupron? I guess its too soon to tell what kind of SE's you will get from it? Thinking about you and hoping you can get some resolution that will make you feel better physically & emotonally.

    Cypher, the list of supplements not to take freaks me out too. My MO had me take B-Complex during chemo. I never thought about the fact that it had 300 mg of Vit C in each B-Complex pill I was taking. I read about avoiding antioxidants after chemo, and asked her about it. She said the amount of C I took was no probelm whatsever.When I went for a 2nd opinion on some post-chemo concerns, I got the same answer. Of course, they could have been just saying it was ok because it was a done deal. I hate knowing this, but we are sure to see changes in treatments, protocols, and all kinds of basic recommendations for reducing recurrence risk, etc., each year that we move further away from our own diagnosis and treatment. That will be hard to take (I'm sure those who finished tx before herceptin feel that too). But as it's also been said on here, we have to just go with that got the best available at the time.

  • lago
    lago Member Posts: 11,653

    cypher I never had really bad hot flashes. On chemo I would get warm flashes between 2-5am. I could feel the wave of warmth move down my body but I was never sweaty. It took me a while to realize when I was having hot flashes now. I don't get that wave feeling. Just warm for a few seconds, enough to maybe take my light sweater off. That's it. I don't get them often but it's usually when  I've eaten a lot of Cayenne pepper. Other hot peppers too but not sure which effect me and which don't. Red wine a little too.

    My D levels were in the single digits just before diagnosis. My onc kept me on D through chemo. She even tested me again to be sure my levels were right. Last time I was tested I went all the way up to 79 which is high but my PCP says that's OK.

    My onc didn't stop any of my suppliments before or after chemo. This is what I was/am taking:
    • calcium 1200
    • Vitamin D 400 IU (included in calcium)
    • Vitamin D3 1000 IU
    • Acetyl-L-Carnitine 500 mg (started this on chemo without oncs blessing. Long story)
    • Vita-Acidophilus 1.5 billion cells
    • Biotin 5 mg
    • Multivitamin/Multi-mineral Centrum

    Happy Dance for PixieNel. After the next 3 weeks it's all going to start better, even on Herceptin. Yay! Herceptin is usually weekly, bi weekly or every 3 weeks. I got out of rads too. You'll probably start the Tamoxifen in a month. I'm not on that but don't assume you'll have major SE. I know some women have very few.

    Katharine2411 Happy Dance for you too. Nail beds hurt… I hate to tell you this but they might get worse for a while before they get better. This is a sign of lifting. The best thing you can do it treat them gingerly. Try not to add any trauma to them. This is what makes it worse. Granted I didn't listen and was keystroking on this forum day and night banging my fingers against the keys. Probably why my little fingers and thumbs had the least damage. Same goes with the toes. Wear comfortable loose shoes.

    swimmom01 I have no idea but you must contact your onc. If it isn't treatment related s/he will send you to your PCP. You should not be in that much pain. Something is not  right.

  • GrandmaV
    GrandmaV Member Posts: 1,045

    I found the medpage article interesting but he offered no solid evidence for his educated guess.  Please consider the source of information for the hypothesis we've all read about.  James D. Watson did receive the Nobel Prize mentioned in the article, but his career since then has been controversial.  It's my humble opinion that he is trying to recapture the lime light he once had.  Other scientists (ie, Bharat Aggarwal and many others) have said that some antioxidants actually enhance chemos affect and have studies and research behind their statements.  The jury is still out on this and there are many ongoing clinical studies, trials and many more planned.  Most of the research is based on in vivo (in the laboratory) experiments and on rats.  You can research each antioxidant to see if there are any clinical trials on it and make a decision based on real evidence. 

    I've already participated in one clinical trial with the use of curcumin during radiation to minimize the skin damage.  Curcumin has also been shown to have an enhancing effect of some different chemo drugs.   I'm about to start another clinical trial using Omega 3, fish oil for joint pain among aromatese inhibitor users.  There a lot more opinions out there to take into consideration. 

    http://topics.nytimes.com/topics/reference/timestopics/people/w/james_d_watson/index.html 

    http://faculty.mdanderson.org/Bharat_Aggarwal/ 


  • TonLee
    TonLee Member Posts: 1,589

    Cypher,

    I understand your concern about bugging the MO.  But, honestly, he's got no dog in this fight.  Bluntly, whether you live or die, he's going to go on with his life.  Why should you worry yourself sick?  I don't believe getting an opinion about a PET from the RO is offensive to a professional in any way.  Most appreciate the second opinion because it validates their opinion, or opens them up to new information when it is contradictory.

    Doesn't mean you have to get the PET now...just means you have the INFORMATION...IF you decide you can't wait.

    But of course, I'm not there, don't know the subtle stuff...lol.  In either case, I hope you get resolution to your concern very soon.

    Roze,

    I am so sorry you are suffering.  I'm at a loss because from what you've written, it seems like you haven't been taken seriously.  And that pisses me off. 

    Something is not right if you are in so much pain.  Period.  Not right.  As in wrong.  As in it NEEDS TO GET FIXED. 

    Keep pushing for answers.  Be the squeaky wheel.

    Swim,

    I had pretty severe arm numbness the first year post-chemo (always when I was waking up in the morning).  I still get it occasionally.  I attributed it to my TE.  If you have that much pain, make an appt.  Pain is your body's way of saying something is WRONG.  Pain that lasts more than a day or two is your body's way of saying it with an exclamation point!!

    As for supplements.

    Good grief.  Even the professionals don't agree (because there is conflicting evidence to date) on whether they are helpful or hurtful during chemo.

    The link Kay posted is interesting, but as of yet, it is just a theory.  I wouldn't worry about it.  This time next year a new study could come out that says supplements are essential for overall survival, blah blah blah. 

    What's done is done for those of us through chemo.

    And good riddance I say ;)

    But for those of you in chemo, you can make the decision the way you've made all the others...hopefully with a little research, talking with professionals, and going with your gut.

    Every year we get further from our last tx, and new information comes out, we're going to see that we made both good and bad decisions based on the new evidence.  However, I think most of us agree we made the best decision we could with the information we had at the time.

    I don't know about anyone else, but that's pretty much exactly how life works for me in all areas all the time :)  I do the best with what I know and have, then move on.

  • TonLee
    TonLee Member Posts: 1,589

    Grandma, you posted as I was writing I guess!

    WHAT YOU SAID! lol

  • eileenohio
    eileenohio Member Posts: 268

    Question for you knowledgable ladies.     Is it better to have a high ER/PR positive number or a low one ? 

  • cypher
    cypher Member Posts: 447

    Shore, I was told by both my MO and RO (along with the nutrition counselor/onc) that vit C was fine.  MO and RO said as long as I don’t take more than the RDA, they don’t care, but not to take MORE than that.  I was always under that.  I also have read books on nutrition that actually say that vit C IS good to take during chemo because the surrounding cells suck it up a lot faster than the cancer cells.  Something like that.  However I don’t know enough about any of this to evaluate any of these claims for myself, so I took  … well per my other post.  This whole thing is enough to drive one mad.

    Swimmom, what Lago said, and also have you tried taking pain meds before you went to bed?  I was having a LOT of tingling and numbness but I have been taking motrin before I go to bed the last few nights and I have noticed less of it.  But def see your dr.

    Lago, have you checked your counts or whatever to make sure that the tamox is doing what it’s supposed to vis a vis your estrogen?

    TonLee, Grandma, very well put, as usual.  TonLee, I wish I had thought to ask my RO when I saw her late last week.  I think they will have me see her again in another week or so.  I’m close to being done – if I were at the front end I might push harder but I’ve got 9 tx left.  And I really do need to learn to get a better handle on my anxiety about this stuff anyway, and to reframe how I put information together.  It’s one thing to ignore symptoms, it’s another to worry myself sick over them when I’ve already got my medical team on board with what I want them to do. 

    Thanks to ALL of you for your support!!!

  • Kay_G
    Kay_G Member Posts: 1,914

    Congrats to those just finishing chemo!  I'm sorry I forgot who that was.  I guess I still have chemo brain. 

    I 100% agree with TonLee, there are varied opinions about supplements during chemo.  And they've done studies, and some have come out and said it's better not to take supplements and some have said patients taking supplements had better responses.  My own opinion is chemo probably works differently with different people and the supplements probably don't change how it will work for you very much. 

    Cypher, I also agree with TonLee, your onc does not have the stake in this that you do.  Don't worry about overloading him or hurting his feelings, it's your life here.  But I also wanted to tell you, I know there is a woman on this site that got diagnosed with cancer recurrence when she received the scans to set up radiation.  The radiologist saw a spot on her bones that he thought looked suspicious.  She got more testing, and she did have cancer in her bones.  I am only telling you this in the hope it might make you feel a little better that if there was cancer there the radiologist might have seen it.  I still think you're entitled to get the pet or bone scan when ever you need to ease your mind.

    Rozem, that totally sucks.  I hope you're able to get control of the pain. 

  • specialk
    specialk Member Posts: 9,257

    swimmom - PM dragonfly1 - she had this happen also and might have some words of wisdom.  I know that neuropathy can happen later, but I can't remember if that is what they told her, and I think she got some PT.  Agree that you should tell your MO.

    eileen - higher ER is a double edged sword - means you have more receptors that can be fed by estrogen, but I think it means that estrogen controlling/suppressing drugs are more effective.  I am one of those unusual high ER/Her2+++ people - I think many Her2+ have lower ER, mine was 96%.

  • camillegal
    camillegal Member Posts: 15,711

    Kathryn Yay for u--oh and Monday night all u'r hair will be back, but don't count on u'r nails, just cover them LOL/

    Swimmer as everyone said call u'r onc. But don't get to worries there are so many things that happen even when done, it's like the same maze but different hedges that we go thru and sometimes it takes a while to work out.

    My counts are always low so I just rake whatever they tell me and hope it works, but if one goes up to normal another goes way down and as u know this has been going on a long time. So I don't really think about it much.

  • eileenohio
    eileenohio Member Posts: 268

    Thanks Kathy,   Yesterday my MO's office to change my appointment date. I was always afraid to ask my ER/PR percent,but yesterday when the nurse called I bit the bullet and asked her. She said I was 100% ER/ER & Her2. I aked her if that was good or bad.  She really did not answer ,she said to ask my MO to explain when I see her in February. Just something else for me to obscess over..  Good or bad it is what it is...

    Thanks again

  • arlenea
    arlenea Member Posts: 1,150

    Talking about the ER/PR.  I had to go look to see what mine is because I seriously could not remember.  Mine is 68/73.

    I see we, sadly, have new girls to welcome so welcome to all those new ladies who are joining our little club.

    Today I went for Integrative Body Work.  The goal is to unlock all the stresses in your body/mind that are causing us stress and pain and disease.  Interesting therapy!

  • sherry67
    sherry67 Member Posts: 370

    I graduated to going 4months to Oncologist for appointments now...

  • cypher
    cypher Member Posts: 447

    Oh please excuse if I've already asked this, but are the rest of you being tested for phosphates?  if so, what are your test results looking like?

  • arlenea
    arlenea Member Posts: 1,150

    Congrats Sherry.  I'm thinking next week will be my last every 3-month visit but we'll see what she says.  I finished (well what I could) Herceptin November 2011. 

    Cypher:  I asked my onc about tests to see if the Arimidex is working and she said no tests required, if bc doesn't come back then it must be working.  I'll ask again next week!

    Swimmom:  I still have lingering effects from that nasty Taxotere but mainly still weepy eyes and nose.  I can bend over and my nose just pours but gets better and better all the time and I finished chemo 6/11.

  • specialk
    specialk Member Posts: 9,257

    arlene - you can ask for tests that measure your hormones - they would indicate whether Arimidex is working since it is a supressant, rather than a cell receptor blocking drug like Tamoxifen.

  • arlenea
    arlenea Member Posts: 1,150

    Thanks SpecialK.  She said something like the ER/PR is tumor specific.  I need to ask again and if she won't do it, I'll ask my primary about it.  She seems like a pretty good doc and came from Moffett.

  • rozem
    rozem Member Posts: 749

    hi guys...thanks for all the kind words.  Just had a good cry with DH - he is my rock I swear.  He just keeps telling me to work hard and I will overcome this.  Praying he's right.  Bone scan scheduled for next fri....

    SHORE1 my hot flashes have returned with a vengence with lupron.  Soaking wet flashes, especially first thing in the morning.  Joints are no worse than with just tamox.  Other than that I really am not experiencing any other symptoms.  I am going for my next shot in a few weeks.  I think they do once a month lower dose and then if you tolerate that you go to every 3 months

  • rozem
    rozem Member Posts: 749

    oh...and i had my bloodwork done in sept and i was in full out menopause - fast forward to december and i get my period.  I think us pre-menopausal women can snap out of meno very quickly

  • swimmom01
    swimmom01 Member Posts: 32

    Thanks ladies! I put a call into my MO, waiting to hear back but the nurse suggested I take pain meds before bed. I think someone also mentioned that. I am going to try that tonight.

  • cypher
    cypher Member Posts: 447

    Arlene, that is a super lame response from your onc!  I shake my head in disbelief.

  • Jennt28
    Jennt28 Member Posts: 1,095

    rozem - I am so sorry you are still going through pain from that recon! You really have had a bad run with it :-(



    Had my Herceptin infusion late yesterday afternoon (Friday). Today is my achy day so I'm planning on a pyjama day. I have only TWO more herceptin infusions and then my MO says she'll write the order to get my port out. It should be out by the end of February 😃



    Jenn

  • lago
    lago Member Posts: 11,653

    Cypher I'm on Anastrozole not tamox. I was tested the first 5 months to be sure I didn't get my cycles back. I'm done. It's been over 2 years 3 months since my last period… and at my age and my mom/sister I know it's not coming back. I have some SE from the AL so I know it's doing something. Remember I'm on the thinner side so I don't have as much estrogen to block. I might not notice as much as others.

  • cypher
    cypher Member Posts: 447

    Lago, what do you mean you're on the thinner side so don't have as much estrogen to block? 

  • LeeA
    LeeA Member Posts: 1,092

    Jenn, I'm excited for you - it sounds like you are at the "seeing the light at the end of the tunnel" stage!  

    Arlene, I think my estrogen was the same as yours - 68 - but my progesterone was much, much lower (in the teens, IIRC).

    Sherry, congratulations on moving on to the every 4 month interval with your onc! 

    Katharine and PixieNel, congratulations on finishing up chemo!  What a great feeling it must be!! 

    Rozem, your husband sounds like he's your very best friend and has your very best interests at heart!  Thank goodness you have him by your side to help you get through all this.  Keeping you in my thoughts/prayers.  

    ---

    Everyone -

    A question - at one point after your chemo treatments did you cease taking the anti-nausea meds?  My first chemo was January 2 and I've taken the Zofran religiously since then - every eight hours.  I've let it lapse today by an hour and a half… 

    I'm wondering if the Zofran isn't contributing to the lower gastrointestinal pain. 

    If I count the infusion day as day one - this is day ten.  Does anyone recall when they stopped taking the anti-nausea meds during the three week cycle? 

    Thanks in advance!  

  • LeeA
    LeeA Member Posts: 1,092

    cypher - I know you asked lago but I'm hyper today Laughing

    Here's some info: 

    March 7, 2008 -- Breast cancer survivors whose bodies make the least estrogen have the lowest chance of breast cancer recurrence, a long-term study shows.

    Estrogen levels -- measured soon after initial breast cancer treatment -- were twice as high in women whose breast cancer returned as in those whose breast cancer did not come back.

    Nearly all the women in the study had already gone through menopause, and most took the estrogen-blocking drug tamoxifen. So where did their estrogen come from? Fat tissue, says study investigator Cheryl Rock, PhD, RD, a professor in the cancer prevention program at the University of California, San Diego.

    "Fat tissue is the primary non-ovarian site for estrogen production in the body," Rock tells WebMD. "And what makes this worse is that the elevated insulin levels associated with obesity are suppressing sex-hormone binding globulin [which removes free estrogen from the circulation]."

    More @ http://www.webmd.com/breast-cancer/news/20080307/estrogen-brings-breast-cancer-back

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.