TRIPLE POSITIVE GROUP
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For mouth sores my onc told me to suck on ice during taxotere infusion (after I got a mouth sore). Never had another one.
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For mouth sores I did the Magic Mouth Wash and Biotin toothpaste and mouth wash during chemo. My sores moved down--ended with them on every mucous membrane. Saw my midwife and an ob/gyn. Used several creams, lotions, vag suppositories. Went away when adriamycin went away. I do recommend the magic mouth wash. The MO or NP can order.
Posted on the tamoxifen thread last night-or early this morning. The SEs remain the same as the AIs. I know my memory is clouded-or actually absent-but I think I almost feel worse on the estrogen blockers than the horrid IV chemos.
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Susan, I'm struggling big time with the arimidex. I'm almost crippled some days! I am going to go buy some curcumin bioperine, like Lee A suggests and I'll let you all know how it goes. Has anyone found some joint relief from the estrogen sucking drugs (as Lago calls them :-) using glucoasmine/chondroitin? I'm hurting and it is almost gardening season!
Nicky, my heart goes out to you. I am praying for you to find some pain relief and sleep and peace. I feel like a wussie complaining of my joint pain when I see what you are dealing with!
Vette, my NP prescribed clindamycin for my raging zits. We all understand what you are going through. One of the things that has helped me is I use the Clarisonic every night. It is absolutely amazing at calming and cleaning your face. And Lago is so on the money with chewing on ice during the taxotere infusion. I had 12 weekly taxols, and as soon as they came in and hooked up that bag, they brought me a huge styrofoam cup of ice. I never had a mouth sore. Tee hee, I kind of wanted to ask if they would bring me a big bag of ice for my butt because my worst side effect from chemo (besides the big D) was hemorrhoids!
Dance, I think you were the one who suggested the probiotic Florastor. Thank you!!! I'm getting back to normal in that area, finally.
Peace to all, you will get through this.
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hey pbrain, cute hat. like lago, in 6 months of arimidex, my bones turned to mooosh. i am FPO about it, as my whole life has been a weight bearing xercize. and been on tami for 3 mos now, & getting to the same house of pain that arimidx caused. i am on a 2 week vacation from it now. and am sorely temted to stay off. because i was doing some reading, and am almost willing to just take my chances. i am so tired of hurting and just really feeling unwell. i have a bottle of it, but havent made it a regular habit yet.
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Hi ladies, I'm pretty new to this site and was just dx in Oct. I will be starting my chemo on Thurs. I'm pretty scared and not sure what to expect. As far as I know I will be getting 6 rounds of TCH plus a month of rads and finish the year off with the herceptin. If you have any advice for me I would greatly appreciate it. Really really nervous about all this! Also I was just curious why some women get cytoxin and some get corboplatin. I'm getting the ladder but don't know if one is better than the other.
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Hi all... Joining you in the anastrozole is not an easy pill to swallow group. I've had lots if issues but for me at least... Yoga... Has helped enormously with the joint pain issues. I am no yogi but when I do it regularly I am pain free!
Hi Ramey!
Welcome... I did TCH before my surgery . We are all very different in our reactions to treatment but I had relatively smooth sailing with chemo. It's not easy for anyone but it is very doable. It is a long day so dress comfortably and bring stuff to do and some drinks & snacks. One of my treatment centers actually fed me but just in case be prepared.
Do you have a port? You will get anti nausea, anti allergic meds in your IV and usually by script to be taken perhaps before but definitely after treatment. My advice is up take them as directed and don't wait for symptoms. They will look for allergic reactions on your first infusion for sure and they might take longer as a result . I was there for a total of 8 hrs the first time . Had to come back the next morning got herceptin .
Keep track of all your symptoms and tell your team if you have to problems or questions
I found it boring.. Very boring.
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Hi everyone, it's been so long since I've posted, but have tried to keep up with this busy thread. Can anyone tell me what their experience has been with tamoxifen/AI as far as when/if you switched from one to the other? I was premenopausal at dx (41), and started tamoxifen after chemo ended almost 2 years ago. I haven't had a period since the first AC treatment. I decided to hold off on an ooph because I was so undecided/emotional, etc. after tx ended, but know I eventually want it (for a variety of reasons, but mainly because I worry that tamoxifen may not be enough/working to block the BC-causing estrogen). So I guess my question is, if a period never comes back, would someone routinely be kept on tamoxifen because they were premenopausal at dx, or would they be switched to an AI because period never came back and they have since gotten older and closer to the age of natural menopause? Also, if I do get the ooph, would standard protocol be to stay on tamoxifen or switch to an AI? I don't see much difference between what I am now and what I would be after an ooph - either way, I think I am in menopause.
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Hello to the most optimistic group of ladies I know! Hope you all enjoyed the holidays, I'm a newby and will be popping in for some happiness on a regular basis, xo, Steph
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shore1-you can ask your doc to test your hormone levels, and see if you are post menopausal. And I believe that if you have ooph they'll change you to an AI.
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Hi Ashla!
Thank you for the advice and info.
. I did have a port put in and it is still pretty painful 2 wks out so I don't know if that's normal or not. I've talked to the doc and he just said its because I'm so small. It does seem to get a little better everyday tho. Did you have any major SE with the chemo and did you also have 6 rounds? They said the only reason I have to have chemo is cuz of the her2+. Maybe they can cut it short.......wishful thinking. I'm glad to have found this site and others who are going thru or have already gotten thru this journey. It really helps!Thank you and have a blessed day!
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Thank you everyone for the advice and info. I did get my Onc to call in a script Friday for the D. I did not have to use it this weekend though. I actually had a great weekend and felt so much better, pretty normal in fact. Is that the norm-that the first week following chemo is rough and then you get two decent weeks most times?
Ramey-hi, welcome here. I am only one treatment ahead of you so we are close in treatment. I think they say that the her2 changes everything, at least that is what my BS told me. I was scheduled to do masectomys until she got my her2 results and then she changed my whole line of treatment and sent me to chemo first. I am not sure about the cyotan versus carboplatin thing-anyone know? I thought carboplatin was just part of the regiment with the new perjeta drug, wasnt sure.
I have a question for those of you who have done chemo, surgery, and rads-which did you consider the worst one that you went thru? I sure wish there were other options than surgery-it seems so drastic and permanent.....
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Pbrain, yes that was me that recommended Florastor. I swear by that stuff! I am so happy you are finally back to normal in that area - you struggled with it for a long time! I wish I had taken it while on chemo, probably would have really helped to keep me more regulated.
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Ramey I too am small. So small that they gave me a kiddie port. My port was uncomfortable for a while too but not too bad (but note I have a high tolerance to pain). I actually kept it in for 2 years. It took a while to realize it wasn't there anymore. I could always feel it if I moved my arms a certain way. Glad I had it though. You won't get chemo lite. You are HER2+ so you'll get the same as me (stage IIB) and my neighbor (stage III). They don't mess around with this fast growing cancer. I too had TCH (carboplatin). Perjeta wasn't approved for early stage 3 years ago so none for me.
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Ramey
No I was very fortunate that I had no major side effects. I suggest you keep a little diary to track so if you do have SE's you can monitor it. I did have a problem with constipation. It seems those steroids they give you do that. It would start 3 days post chemo like clockwork. Do not ignore this if it happens to you. It can spiral into more serious problems. Took me a few rounds and the help of the girls in this forum to figure it out and resolve it. Drink lots of fluids and if you are able eat a nutrient rich diet during treatment.
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Great news on the HER2 neu+++ front! Check it out!
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vettegirl - my side effects were slightly different each treatment and it took longer to recover each time, but everyone is different.
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LindaKR you need to be registered. Can you copy paste?
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Ramey everyone has different SE's or reactions to all of this, so it's hard to tell which is the worse--to me the surgery was the easiest, I remember just thinking it was going to be horrid after all they are removing body parts that I was used to, but by this time they were just hanging around--and I thought wow. --so it's hard to say, but just pay attention to what u feel like and always tell the Dr. and if u need anything they will give it to you to help u. Don't be shy--and all the ladies on here can answer so many of u'r questions (not me) but they are amazing.
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Pbrain, I'm convinced that fish oil helped my joint pain. I've also lost 16 lbs, which probably helped. Onco said my body adjusted to the Ai so that could be too, but I'm not giving up my fish oil.
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Lago: here is the info on the link that LindaKR posted. Very good news for us with HER2+.
2013 Top Stories in Oncology: This Was the Year for HER2-Positive Breast Cancer
- Written by
Kimberly L Blackwell MD
PracticeUpdate: In your view, which development that occurred in 2013 in breast cancer research could have the most significant impact on clinical practice?
Dr. Blackwell: This year was the year for more options in the treatment of HER2-driven breast cancer. In chronologic order, we saw the approval of T-DM1 in the United States in April 2013. We saw its approval throughout Europe in the fall of 2013 for the treatment of taxane/trastuzumab-refractory metastatic breast cancer. We saw a first-ever approval on the basis of neoadjuvant activities for pertuzumab in combination with a taxane in neoadjuvant setting in the fall of 2013. In the summer, at this year’s ASCO meeting, we had a study looking at an older drug, vinorelbine, in combination with trastuzumab and showing that the mTOR inhibitor everolimus improves progression-free survival.1 And, then, we also have the approval of lapatinib and trastuzumab in trastuzumab-refractory metastatic breast cancer throughout Europe. So we had three either drugs or combinations approved. We obtained new data from phase III studies of the use of everolimus in the HER2 setting. All these things combined really made it a breakthrough year for the treatment of HER2-positive breast cancer.
PracticeUpdate: What specific changes have you observed or do you foresee as a result of these developments?
Dr. Blackwell: I personally think that we are going to see a lot less recurrent HER2-driven breast cancer, and that’s because we are now able to use highly effective antibodies, like trastuzumab and pertuzumab, in the curable or earlier-stage setting. We know that pertuzumab improves survival in the metastatic setting, and now that we are able to use it in our earlier settings, based on the neoadjuvant approval, I would hope that we’ll take a generalized cure rate of somewhere about 90% for all women facing HER2-positive breast cancer to an even higher level. These are pretty exciting times! At San Antonio this year, we saw a 97% long-term disease-free survival for small lymph node–negative HER2-driven breast cancers with the combination of paclitaxel and trastuzumab.2 That is among the best cure rates we’ve ever seen in early-stage breast cancer. So, I think that all of these highly effective drugs that have limited toxicity will hopefully cure more women facing HER2-positive breast cancer.
I really feel that no one needs to be afraid of breast cancer anymore, at least not HER2-positive breast cancer.
PracticeUpdate: Would you put this development into historical perspective for the practicing physician?
Dr. Blackwell: In 2005, we saw the first data that trastuzumab improves overall survival for patients in the first-line metastatic setting.3 Very quickly after that, in 2008, we saw that trastuzumab offers women a higher cure rate in early-stage breast cancer, and the pace has really picked up. From 2005 to 2011, we had two drugs—trastuzumab and lapatinib—available for the treatment of this very important driver of growth, this HER2, and then, in a period of 12 months, we’ve seen two new drugs approved, one new combination approved, and one possible new combination for heavily pretreated patients.
PracticeUpdate: Would you summarize why you picked HER2 as the 2013 top story in breast cancer?
Dr. Blackwell: This success serves as a really important model that we should now be applying to forms of breast cancer that aren’t as hard to treat, including triple-negative. If we can do this in HER2-positive breast cancer, then nothing should slow us down in trying to figure out the same paradigm for a triple-negative breast cancer.
References
- O'Regan R, Ozguroglu M, Andre F, et al. Phase III, randomized, double-blind, placebo-controlled multicenter trial of daily everolimus plus weekly trastuzumab and vinorelbine in trastuzumab-resistant, advanced breast cancer (BOLERO-3).Paper presented at: ASCO Annual Meeting; May 31–June 4, 2013; Chicago, IL. Abstract 505. J Clin Oncol 31, 2013 (suppl; abstr 505).
- Tolaney SM, Barry WT, Dang CT, et al. A phase II study of adjuvant paclitaxel (T) and trastuzumab (H) (APT trial) for node-negative, HER2-positiven breast cancer (BC). Paper presented at: San Antonio Breast Cancer Symposium; December 10–14, 2013; San Antonio, TX. Abstract S1-04.
- Marty M, Cognetti F, Maraninchi D, et al. Randomized phase II trial of the efficacy and safety of trastuzumab combined with docetaxel in patients with human epidermal growth factor receptor 2-positive metastatic breast cancer administered as first-line treatment: the M77001 study group. J Clin Oncol. 2005;23(19):4265-4274.
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thanks
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Got JP drains out today!!! Pathology report came back& 3 lymph nodes tested positive out of 19 he took!! I got clear margins greater than 1.0.....My tumor was still 7.5 at time of surgery& had chemo first ugghbut he said chemo works better with faster growing tumor mine was like a 1or2 but he said hormonal therapy works better with slow growing tumors!! Im 99.9 percent sure I had this at 24 when I had discharge from nipple! Anyhow Im taking I am stage 3 A. He didnt go over survival rates or anything but will b following me f 5 years!! Monday I go meet radiatoon to see how many rads I will need!
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Yay for DRANO. Yes your BS is correct that chemo works better on faster growing tumors. Sounds like the ESD or EBD will be your big gun. BTW don't worry about stage and survival. I know several stage III gals that are doing just fine but some stage II that got mets. In time they will find a better way to predict.
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What is EBD& ESD?
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Estrogen Blocking drug (Tamoxifen) and Estrogen Sucking Drug (Arimidex etc.)
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Ramey, I wasn't much of a pill taker, so after my first TCH, I felt fine the next day. Don't be the doofus I was. I didn't take any of the anti-emetics and by the next day, I could no longer control the vomiting. Every time I took a pill, I could keep it down for about 2 hours, then threw it up. So take them immediately, and also make sure to have some proton pump inhitiors (tagamet, prilosec, etc, over the counter). Take those liberally. I wish I would have, but I'd never taken them before and I didn't know I could take more than one at a time. My best advice is to call or go to your cancer center right away if you are not controlling your symptoms. They'll hook you up and help you out, even without an appointment. I had no idea and ended up in the hospital but that is my own P brained fault :-) They will watch you closely for allergic reactions, so don't be scared there. I had one on my 4th taxol, and the nurses were so skilled in helping me! I was impressed to the max, but I guess they do that all the time.
Unlike Ashla, I didn't find chemo boring because I came in with a charged up iPad and watched Frasier re-runs on streaming Netflix. I would just crack up the whole time. But definitely bring snacks, something you love. I brought bottled water and peanut butter-filled pretzels. You'll be surprised at how kind and attentive your nurses are. Oh, and I'm the same, wouldn't have gotten chemo without the Her2+, but Herceptin is cleared to be used with chemo at first, and that seems to be the best treatment. Most oncs won't dose it alone.
Ashla, I'm thinking more and more about yoga. I love it so much and haven't been doing it since the diagnosis. I'm feeling like creeping death as my Ma would call it. I have some DVDs, so I'm gonna get started. And Grandma, I haven't been doing the fish oil for a few months, so let me try that again.
Vette, rads was a walk in the park. I really had no side effects to speak of, a very tan booby and some achy-ness when I finished. I actually found the procedure kind of fascinating, but I'm a dorky scientist...
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Dance, I can't thank you enough for your recommendation on the Florastor. Let me just say I rode the commuter trains in Philly this Christmas (they have no bathroom) without fear. Last Christmas I couldn't even take the 20 minute ride to go downtown and see the PA Ballet's Nutcracker because I wasn't sure if I'd have to jump off at some random stop and poop on the concourse
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PBrain
Nice hat ...
Re yoga ! Go for it on your own. I actually prefer it on my own for the pure physical part. I have developed my own routines from the best of each of my instructors.
Put on Pandora yoga music, new age, Spanish or classical guitar .. Sometimes Enya and just do it. Remember your hands and fingers !
A good instructor , however, makes the psychological, spiritual part so much better.
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Thanks girlstrong for the list! Encouraging news for we Her2 gals!
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Pbrain,thanks for the info. I'm not at all afraid to ake a lot of pills as long as I know their not gonna hurt me. I was popping vicadin and Motrin every 4 hrs after my surgeries. Im not a wussy by any means but I can't handle pain well. I will do whatever I need to get thru this as comfortably as possible.
I've noticed on here that some experience constipation and others have diarrhea. I just want to make sure I'm on top of everything before it gets to bad if that's even possible. Also I seen that many of you have had the TCH before surgery. But my Doc had me do surgery first......just wondering what the difference is? And was the Prilosec for nausea or heartburn. Sorry, so many questions.
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