TRIPLE POSITIVE GROUP
Comments
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Hap - maybe yours is just the better way and my treatment is now royally screwed up
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HapB, my surgery was well over a month before I started chemo (August 1 - September 20) and there wasn't any consternation among the medical people... I'm not sure why they gave you a 30-day deadline.
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There is an optimal window for chemotherapy, but as with all of this treatment, it is not an absolute - and we are all individuals. Here is some study info about this, with the study itself embedded:
http://www.breastcancer.org/research-news/20140220-4
That said, I had BMX with bi-lateral SNB on Nov 1, 2010. My positive SNB was not found in the OR, it was found later in the lab during the more intensive pathology done afterward. I had to go back to surgery to have ALND, but had to wait for my surgeon who was out of the country at a symposium in Japan. My ALND was five weeks after BMX in Dec. 2010, and two weeks later I had emergency surgery to close my skin on the left side because my expander ruptured through an area of necrosis. I went back to the OR twice over the following 4 weeks, ending with removal of the expander in Jan 2011. I had to heal from that surgery before starting chemo mid -Feb of 2011, so all in all, I was 14 weeks from the initial surgery.
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Hap - the study results said that Taxol + Herceptin were okay for smaller early stage cancers. Posey's was larger than 3 cm.
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Hi Ladies,
So happy to be here! I am new to the triple positive group ...newly acquired HER2 diagnosis following surgery in June. I have had neoadjuvant ACT chemo ( Jan'thru May)to reduce a 5 cm tumor then breast conserving lumpectomy followed by SNLB and axillary node dissection. I have completed 9 radiation sessions with 7 to go...experiencing SE's now and my breast is super- sensitive. I am newly on Arimidex and Herceptin with headaches and irritability being the "not so fun "SE. I am also stage 3a and oftenlooking for information, stats, positive outcomes regarding this scary new reality. I welcome any recent uplifting advice...thank-you!
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Jagger2015,
Sorry you find yourself here and yet happy because this is an info-sharing, supportive group. You will find so much knowledge from the 3+ women!
There are 2 Arimidex forums I follow at BCO. Look around for the one(s) that will help you. Not everyone has side effects from Arimidex. I went thru 2 generics before getting the brand name. I really don't have any side effects now.
There are 2 funny forums that I like. One is "stupid comments" and the other is "you might be a cancer patient if..." .
Best wishes.
Vicky
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Hi Jagger!
Congrats for getting through chemo and surgery! During radiation, my radiated boob was so sensitive, I just stopped wearing a bra. I also wore my seat belt funny and was stopped by a cop for my unorthodox use of a seat belt. I, too, was diagnosed at Stage IIIA, with a 5 cm+ tumor and one compromised node. I'm on Aromasin, and have added three meds (Celexa, Fosamax, and Ambien) to counter the side effects. Sad, but I WILL make it through ten years!
So far, so good. I have my mammogram coming up soon, and am thinking about an oopherectomy so I don't have to get monthly Zoladex shots.
Welcome to the Triple Positive Board!
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Hi Jagger2015,
Welcome, sorry you have to join us, but you are in the right place when it comes to support and advice. I am new to this, had my surgery in July and just started chemo. SpecialK has been here since this group started back in 2011, I am know verifying everything with her (sorry, SpecialK, but this is true, as soon as I have doubts or do not understand something I am thinking for myself I have to hurry and ask SpecialK, she knows for sure). I would have been lost without this community. Cherry
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I am reading all your posts but feel so drained today, very tired, nothing helps, not even chocolate
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Hello, all!
Checking in after my post-op visit today! I was able to confirm clear nodes & clean margins so that was a blessing! Still stuck with this drain tube for a while longer, but it beats getting a seroma! Feeling optimistic about my first oncology visit next Thursday! Sending love & light to you all!
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hap - that was just the start of surgery for me, I have been a bit of a Murphy's Law person with reconstruction, lol! My first plastic surgeon would say "here comes trouble" when he saw me walk in. All is well now though and that is all that counts.
vicky - congrats on your deportation!
fleur - excellent news on the margins and nodes - drains are a necessary nuisance - take it easy!
cherry - happy to help and I am sure any questions you have can also be addressed by the very knowledgeable folks on this thread as well!
jagger - welcome - sorry you find yourself here, but this is an awesome group! I did experience low grade frequent headaches the longer I was on Herceptin only - they dissipated once I was done.
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Hi Jagger, I love this thread and the ladies here. I throw out side effects every other week and others are so helpful and supportive...
Congrats, CoachVicky, on getting that port out! Mine eroded out early on and I remember having it taken out...I now get everything the old fashioned way...IV...
I unfortunately think I'm starting to see lymphadema coming on. Crap - thought I'd escape it. I'm starting to measure my arms. Feels like tendinitis in my right arm, but I question that.
I do have a question for our walking Wikipedia, SpecialK...I had a mastectomy and pcr, but had the radiation boosts (5). Other girls I know who had mastectomies and clear margins or pcr did not get boosts. I'm ok that I had them, but I'm wondering why I had to versus others...any idea?
Oh, and I have stiff knees and hips...I feel 80 when I get out of a chair or out of bed or on the stairs...is this thanks to Letrazole? One more Herceptin left...
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posey - I would see a certified lymphedema therapist to have your arm checked. I have bi-lat lymphedema, and have been treated by PT over several spans. There are some specific tests that they do, and a certain way they measure, to determine whether what you are experiencing is lymphedema, venous edema, swelling due to allergy or reaction to meds, cording, or axillary web syndrome. All of these can produce similar symptoms. As far as the rads question - I did not have rads, had clear margins at surgery, ALND, and adjuvant chemo. My guess is the chest wall and lymph node involvement, regardless of margins and your good result from neoadjuvent chemo. Herceptin can cause some body aches, but your stiffness is likely the result of letrozole - my experience is that the more you move the better the stiffness is.
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Hey Ladies. Here's a dumb question for you....last chemo was Feb 15. Finished radiation in April. I'm still on herceptin and taking tamoxifen. Although my hair is growing, anyone have any idea why my eyelashes are still so short and if I'm stuck with them like this forever? I mean, I have eyelashes but they are too short even to try mascara. If this is what I'm going to have from here on in, so be it. I just want to know so I can stop willing them to grow.
Did your eyelashes eventually get back to their former length? Did it take forever?0 -
Leslie,
My eyelashes are still stubby. I don't bother with mascara anymore, though every now and then, I pull out the fake eyelashes.
I have compensated somewhat by emphasizing my eyebrows more and buying some cool eye glasses.
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Thanks, SpecialK. I don't believe I had chest wall involvement; it's nowhere in my reports and I think I asked at one point? Now I'm freaking out! And the other girls had nodal involvement too...
I have called my surgeon and am looking for a referral to someone at the hospital who diagnoses this as you mentioned - thanks so much!!
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posey - I assumed this since you had chest wall in your sig line for rads, so don't freak out! Maybe the size of your tumor bed was the reason, even though you had pCR, you had a pretty big lump - or possibly this is the standard protocol for stage, or Her2+. Can you access the RO's notes, or the referral from your surgeon or MO to the RO? That might help clarify.
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oh, yes...see what you mean. I might have checked off chest walk as I assumed they had radiated my chest wall. I do recall my RO saying at our first meeting that we could possibly skip five sessions. At the time I didn't know what she meant, but she must have been referring to the boosts. I was then given the boosts. Perhaps since I didn't argue it. I may just ask at my next appointment. Thanks so much ;
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Hi everyone,
Well, I have my treatment plan. Radiation; Taxol once a week for 12 weeks; Herceptin once every 3 weeks for a year; hormone blockers for 5 years. Next week I get a genetics assessment Thursday and see the radiation oncologist on Friday. Right now the issues in the air are the outside possibility I'd have the BRCA gene and whether I'll have internal or external radiation. Internal radiation would be prior to the chemo and external would be after the chemo... The doc states that nausea shouldn't be too big of a problem, but there will be fatigue...and of course I'll lose my hair.
Questions:
Do ports hurt?
When does your hair start growing back? When the chemo ends?
Has anyone experienced Peripheral Neuropathy as a side effect?
How do I find the Facebook group?
So far, I've been really tough but I'm tired this week (before I've even started treatment, lol) -- and overwhelmed with looking at head covering options and worrying about work and every little thing.
I have a fantastic prognosis so I should be grateful.
Thanks for listening.
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ports do not hurt, in fact i know some women who didn't bother to have them removed after their treatment. the first couple of days were very unpleasant for me -- my body felt invaded and certain positions were painful -- but my body adjusted very quickly and now i completely forget about it.
my hair started growing back about 2 months after my last taxol infusion, but i also had a course of EC before that, which is even harder on the hair. maybe your follicles won't take as hard a hit with just taxol.
i had zero neuropathy.
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Dannajae, Hap's advice to rest up before treatment is excellent! I think the more you can do this the better. I wasn't able to rest up before this journey...I entered it completely burned out and hadn't had a vacation in a year. Good luck!
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Danna - if I understand what you are saying about "internal" versus "external" radiation, I got the internal (brachytherapy) before chemo. If you are a candidate (age and tumor size seem to be the main things) they want to do it before your surgical cavity closes. I started less than 10 days after surgery and was done a week later. If I haven't correctly interpreted what you mean by internal, just ignore all this.
With Taxol, I lost my hair everywhere (and I mean everywhere) after about 4 weeks and it still fairly sparse on top - 5 months post Taxol - but many don't lose it all or have it growing back before they are done. I am 71 (and I know that makes a difference) but I was more comfortable with my totally bald head than I am now with two bald spots on the crown. I had a number of wigs from a friend but DH didn't like the one I did and I never wore any of them - just scarves or hats.
With Taxol, the first 48 hours were the hardest - the steroids interfered with sleeping but I was tired. I always really had to pay attention to constipation. If you will be working during chemo, I suggest you try for a Friday afternoon session. That will give you the weekend to recover. I wasn't nauseated but did find I was more comfortable with a daily nexium. I had snotty, bloody nose. At about week 5, I started getting very painful neuropathy and stopped the Taxol after 8 sessions with my MO's blessing. I lost two toenails after Taxol finished but did a gel manicure on my hands and they did well.
I was uncomfortable for about 48 hours after port placement (felt like they had pulled my shoulder out) and if you can wait at least a week before you start chemo after it is put in, I recommend that. Now, 6 months out, I just take it for granted. Probably won't take it out right away even after I finish the Herceptin in Jan. I read in someone's post that she wore her bathing suit and got a slight tan line and her doctor put the port in following that line (pretty clever I thought). I am a (bad but enthusiastic) golfer and the port certainly hasn't been a problem for me there either.
My Facebook group was formed from the BC site "starting chemo Feb 2017" by one of the ladies in the group smart enough to do it. Start by looking for that when you know whether rads will be first or later. There is also a "weekly Taxol" group on this site as well as one when you know what your AI will be. Too soon to worry about that now though.
Some call Taxol "chemo lite" and reading others posts, it certainly seems that we Taxol ladies have a much easier time of it. There are side effects but most can be managed and it sounds like you have a good team. Talk to them about SE as you go along because there are things that can be done (slowing down the infusions, SE medication etc., changes in your "pre chemo" cocktail etc.
My biggest lesson in this has been to let people help me which is hard for many of us. I chose to be very public about my diagnosis from the beginning and have been totally supported (again I do think age is an issue here) and have actually gotten a few friends to get their long postponed mammograms.
Stay close and keep asking questions. Someone will have the experience to give you some advice and many will provide support.
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Hi guys, I was cleaning some mushrooms in the kitchen sink and saw that veins on my left hand got swelled a lot, when I elevated my hand the blood ran down but when I took it down it swellt again. When I am saying swelling I mean like I have not seen before, not that much. Anything familiar Cherry
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Thanks for the eyelash answers. Seems it all depends on the person, and feels like maybe I'm going to be one of the people that doesn't get long ones back. I guess if that's the worse "forever" side effect I get, I can live with it.
Port questions...my port bugged me for a good 2-4 weeks after getting it inserted, but a lot of that was because my seatbelt rubbed on it, etc. Actually using the port now? No issues. I'm glad to have it. Someone mentioned not removing it at the end...my Dr has said we will probably leave it in for a year or 2 after I'm done herceptin. I don't think it can be reinserted in the same spot once removed, so many doctors will leave it in in case it's needed again. It really is nice to limit the arm pokes with every needle you need.
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cherry - chemo definitely is hard on the veins, but not sure if it could be a drug allergy unless you have more universal swelling. Is your chemo administered on the left side - do you have a port or is your hand being used?
danna - my port was installed under the mastectomy flap during that surgery (I did adjuvant chemo) so any discomfort was blended in with the surgical discomfort. After the normal course of healing I had no pain or any other issues with my port. I kept it for 6 years since I had no incision from installation I chose not to remove it until my oncologist said it was time for it to go. I used lidocaine cream (EMLA) prior to going to the center for chemo, I put a blob on the port then covered it with plastic wrap so it wouldn't wipe off. I also had them spray it with freezing spray - I only felt slight pressure when the port was accessed, not pain. My port was a tiny subclavian placed right below the hollow of my throat - this was good because it was undetectable, you could only find it by feel, but this made it slightly more difficult for the onc nurses, so I pre-empted any discomfort with the EMLA and spray. I am linking the hair timeline from another member so you can get an idea. She is a TP and had TCH, so you may experience slower fallout and faster grow back than she did. It goes from right to left and there are tiny dates in the corner:
http://www.lauren3g.com/transfer/hair/Lagohairtransition_03.jpg
Brachytherapy is usually offered to women who are post-menopausal, and have enough breast tissue remaining after lumpectomy to have a particular margin around the site - so you can't be small breasted, but it is usually done very shortly after surgery. If it has already been a month since your surgery, this may disqualify you from using that rads modality.
I was concerned about chemo induced peripheral neuropathy (CIPN) and I took 30g of L-Glutamine powder daily, in three 10g doses dissolved in a cold non-acidic drink, plus a regular capsule of Vitamin B6 to try to prevent it. I experienced tingling after each of the first three infusions, that resolved before the next one. For the final three infusions the tingling and numbness did not resolve, but I continued with the supplements and all neuropathy was gone by about 90 days after the last chemo. You will see some posts on this site about icing during the taxane portion of the chemo to prevent neuropathy. I am more skeptical about whether it has any effect on neuropathy, but I did it to prevent nail lifting, which is a known taxane side effect. I iced my fingers and toes with bags of frozen peas for the entire duration of the Taxotere, and held ice chips in my mouth to prevent sores.
For the Facebook page - there isn't a central one, it seems to be something that each chemo month (starting chemo in XX month, 2017, etc.) chooses to do independently of BCO. I am not on FB so I can't help you there. It seems likely that you may start chemo in September - if that group has not already formed, it will shortly I am sure.
Here is a link to the weekly Taxol thread:
https://community.breastcancer.org/forum/69/topics/788735?page=268#post_5032379
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SpecialK, I have piccline on the opposite arm, my right sid
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cherry - keep an eye on it, and let your oncologist know about it at your next appointment, or sooner if it gets worse. Try to elevate that arm for a while to see if that helps. Chemo drugs are notoriously hard on your veins so it may represent some irritation that is temporary.
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HapB, SpecialK, it is not swelled if I am not doing anything, it is fine when I am typing for example, only that time I was doing the dishes, but I will call them.
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guys, how do you get your Herceptin? I am getting it as a shot in my tie, is it a standard? Because you have mentioned before you can get it trough the iv.
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cherry - injectable Herceptin is not being used yet in the US - those of us who live here get it infused by IV, from 30-90 minutes depending on the center. I believe injectable Herceptin is available in Europe and the UK.
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