TRIPLE POSITIVE GROUP
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navymominohio check with your onc again. The FISH test I understood to be either yes or no. If you get unequivocal I thought they are supposed to do the test again or recount. There can be human error of false negatives so you want to be sure you get this drug if you need it.
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navymom - maybe ask for a different slide/sample for a second FISH.
For the lumpectomy/rads question - I was originally scheduled for a lumpectomy and my understanding is the need for rads for this type of surgery is to radiate the wound tract - where the area of cancer has been cut away, and basically dragged through remaining breast tissue, to the external area of the incision.
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This site offers up a pretty good explanation of IHC and FISH testing:
HER2 Testing: Summary for Breast Cancer Patients
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Also, I'm certain this has been posted before but perhaps it fits in with the current conversation (?):
Some HER2-negative cancers may benefit from anti-HER2 therapy
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The Her2+ vaccine trial I participated in also has begun to enroll those who express Her2 at the +1 and +2 level (those who would not have received Herceptin) because there is thought that they may acquire recurrence prevention advantage.
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Wow, a lot of info on here recently! I am right handed, but use my left arm as well. I just don't write with it, but I dial the phone with it, etc. I had high grade Dcis in my right breast. Chose a BMX for familial reasons. They found IDC in the left.
Forgot who asked, but yes, my tx was cut 25% for the rest of my TCH 6 after my 2 tx put me into renal failure.
Love the new pics! You all look great.
Welcome to the newbies. Sorry you have to be here. Barberchic, I am happy for you that you have one less problem! That's great. And I hope you do stay. Lots of info in this board, and real nice people too. It's a really POSITIVE Board! LOL (I hear the pun groan, but I forgive you, LOL)
Much love to all.0 -
I like that pun
I will definitely stay! Love to all, have a happy Easter!0 -
Happy Easter everyone!
Navymom: Glad you found the SNB so easy. To me, it was the very worst thing of the entire process. It was the most barbaric thing I've ever been subjected to. Those injections with no numbing agent were horrible for me and then the styrofoam cup holding things in place....awful! I don't know why they can't do all that when they put you out but guess it has to circulate for awhile. So glad to hear others found it easy!
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Lago, Arlene, SpecialK, thanks ladies for your input re rads. Having not actually had surgery yet, SpecialK, your theory makes sense to me - regrettably.
I was hoping for a break. Not looking forward to spending my long-awaited summer driving to radiation every day - without anti-perspirant! \Happy Easter everyone.
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ArleneA what kind of barbaric place did you go to for SNB?! I got 4 shots of lidercaine around my areola before they ever injected any tracer/dye. I never felt any of the dye shots. I was completely numb at that point.
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Right handed and right breast.
Navymominohio...had goose bumps reading your post as I have kept you in mind...I thought your surgery was after mine,(sometimes I read too fast)...so glad things went well..inspiration to me. I am not too nervous for the surgery itself as my biopsy went well so no reason to think the lump will not also. Thinking positively the results from the node will be good. It's easy when you only experienced good. Impressed with the 5 mile walk....I walked 2 today (stress reliever) and was impressed with myself:)
Thank you for the warm welcomes from everyone..great info. Learning so much. My biopsy did not have the FISH test but will inquire if that is the test used for the lump results. Surgery April 4th. Looking forward to learning the next step in the plan.0 -
I had the SNB done at the same time as the lumpectomy. Is this not the standard procedure? Post surgery it was more uncomfortable than the lumpectomy area. The SNB area had a swollen lump for weeks. I can't imagine going in for the snb seperate as a procedure.
Lago- You are Her2+ and have been treated with both Herceptin and Tamoxifen? What reason would a her2+ patient get tamoxifen? Lately my MO isn't telling me anything. Just everything is going as it should be. I am nearing the end (Thank God) of my treatments, 6 more rads. and the herceptin will be ongoing, but only every 3 weeks. Totally get your life back.. Could you share your herceptin treatment? Did you go for a year?
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Waitingforthenextstep Tamoxifen was an option for me but I'm actually on Anastrzole (generic Arimidex). I'm triple positive like most of the women on this thread. This means that not only am I HER2+ positive but I am also ER+ (also PR+). If you are hormone positive you will get either Tamoxifen or an AI like Anastrzole (there are several). Because you are not hormone positive you will not get these drugs. Hormone positive means the cancer is fueled by these hormones. The Tamoxifen blocks it from doing that, AIs suck it out of you and prevent it from doing that. This is a simplistic definition but you get the idea.
But even though this is a triple positive thread we never send anyone away. There is lots of good info that can benefit you that doesn't relate to hormone therapy.
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waiting - sometimes people have the SNB early (a day or two before the main surgery) to determine if they need to remove more nodes buring the lumpectomy/MX/BMX that follows, but this is the exception. I had a bi-lat SNB during the BMX (which is what most people do) and then had to have axillary clearance surgery 5 weeks later, so another larger surgery. On your Tamoxifen question, there is no reason for someone to be prescribed Tamoxifen related to Her2 positivity - it is for the ER+ aspect. The majority of us on this thread are ER+/PR+. Those of us who are post meno go straight to an aromatase inhibitor (Arimidex/Aromasin/Femara) but some who do not tolerate the SE well are put on Tamoxifen, or in an attempt to prolong the benefits of hormonal therpay, start on Tamoxifen and then switch to one of the AI drugs.
lago - I had no numbing for my bi-lat SNB, but I only found it painful (stinging) for the few seconds when they injected the tracer - 4 points at clock hands into the areola on each side.
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Ok, new question. It looks like at 4-5 weeks PFC, I've lost all of my eyelashes. They hung in there for so much of it, but now are gone.
Anyone have an eyelash serum they would recommend? I don't think I should be putting propecia around my eyes...
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Pbrain this is not unusual. Happened to me too. The reason why this happens is because you old eyebrow/lash hair actually stopped growing on chemo. Because there was no new hair to push it out it didn't fall out… till now because the new hairs are growing right behind it. Eyebrow & lash hair grows slower than head hair so that's why it didn't get pushed out. It was probably in the resting phase when chemo started.
I just used eyeliner and Anastasia brow duo to fill in… actually still use both. I always used liner. My eyebrows are now thinner because of Anastrozole. Initially they came in really nicely.
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Pbrain, I've seen a brand called Brian Joseph's recommended but I haven't tried it. I've also read that some women use Latisse on their eyebrows. I have the half-strength Lumigen but haven't tried that yet either - despite the fact mine have thinned considerably.
I'm in a Facebook chemo group with some women from BCO.org and one of the women found a less expensive source for the Brian Joseph's product. I'll see if I can find re-find it - and as an aside, if you or anyone else wants to join the group I'll give you the name of the person to contact - actually, one of them is Bryona, a triple positive as well who has posted on this thread.
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Here's a link to the site that sells it for $39.95 (apparently less than most other places). I'm thinking about ordering it as well.
http://www.shop.simplyyouboutique.com/Brian-Josephs-Lash-Brow-Conditioning-Gel-BJ-Eye.htm
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When my brows started to thin on Anastrozole I started painting Minoxidil on them. It has helped a little but it takes time. I don't think I've been doing this for 6 months yet. It can take that long. But when they fell out after chemo that came in at a decent pace. I might wait till you start using anything.
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Thanks Lafo and Lee A and thanks for the explanation. I've never had any lectures on the cycle of facial hair growth, so I had no idea. I just noticed about a week ago that when I put on my mascara, it didn't seem to be doing anything.
I'm doing Monoxidil on my eyebrows and head, but I'll give the Brian Joseph's a try. No matter how much experimenting I've done with makeup in my life, I've never learned how to apply false lashes!!
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Chemobrain me, Pbrain! I misread eyelashes for eyebrows!
Latisse is for eyelashes and it's available by prescription. It would probably be the most effective. My dermatologist (a guy) has the most incredible eyelashes I've ever seen and I'm sure he uses it.
I also have a screen shot from someone who mentioned a homemade remedy for eyeLASHES. I'll see if I can find it.
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Here's the link. It's a tip from one of the women on the Hair, Hair thread. Recipe/ingredients:
http://community.breastcancer.org/forum/69/topic/707348?page=620#post_3481061
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Thanks Lee A. I'm a little worried about Latisse because it can change the color of your irises, believe it or not. I'm kind of used to my baby blue eyes. They've been in my head all my life and I look odd when my pupils are dilated
But maybe I'll get brave and give it a try. Being bald is one thing. No eyelashes is quite another!!
And I promise, that chemo brain will go away soon. I find I'm no longer staring at things for minutes with no recollection of what I was doing!
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Yep, I've heard it can change eye color which is kind of creepy. My eyes are hazel (I guess) and I don't care so much about the color but the thought of it having the ability to actually change eye color is pretty disturbing. I have a little bottle of the .01% but haven't cracked it open yet (the oncologist prescribed it for me but it's not the same strength as Latisse).
If I had blue eyes I wouldn't want to give them up because of chemotherapy (or breast cancer). Nope, no way.
Thanks for the chemobrain good news. I think it's particularly bad (?) the weekend following an infusion. And the dreams the weekend after the infusion. Gack! Horribly detailed/disturbing. I had the same experience the last round on the Sunday following infusion. Makes me wonder if it's wending its way up to the brain on day five.
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I used the Brian Joseph's lash/brow gel all thru tx and didn't lose many at all. Although like lago said, they could still fall out in the next couple weeks.One tube lasted about a month and it was $40+ per tube, so I sure do hope it helped for all the $$ I spent on it.
MO did clear me for taking biotin so I will start that this week. I talked to my Nutritionist and she said it takes 3000mcg per day to be effective. Does that sound about right to those of you who have taken it?
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PBrain, I found my lack of eyebrows and eyelashes to be extremely short-lived. My eyebrows practically appeared overnight and my eyelashes quickly followed. They aren't very long, but long enough to use mascara and are quite full.
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Losing my brows and lashes in the month post chemo seemed more traumatic even than going bald. Perhaps because I wasn't prepared for it. As a heads up don't be surprised if you lose them again in another 3 mos. My mo told me they're on a 3/4 mo cycle and because you lost them all @ once it can take several cycles to work it out. Rave reviews on Latisse from users.
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LeeA I have actually hear Latisse being used for eyebrows too.
Pbrain & LeeA I too am concerned about the dark irises and I have golden brown eyes with big pupils (so I've been told). Granted it's rare but you know how it goes. It may be rare but if you're the one to get it is who cares if the chances are only 3%. But check with your doctor. I believe it only darkens they eye color for people who have brown pigment in their eyes, like brown eyed and hazel eyed people. Also it is $$.
Bren I've always taken 5mg of biotin. My dermatologist was pleased to see that on my list of supplements and said that was the correct amount, at least for me.
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hi ladies - popping in to say hi!
lago and tonlee LOVE your new avatar photos, its so nice to see what everyone looks like, puts a face to the name
pbrain My friend is about 1 yr PFC and her eyelashes are still falling out every few months, they grow back tho
i had a question about a supplement, and i know you ladies are very well versed -anyone on coenzyme Q10? if yes what do you know about it?
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Rozem, what I know about co-Q is that it was a hot research topic in the 80's because they felt it might be another unidentified vitamin. Mice who were deficient in it developed skin that tore very easily. While it probably isn't a "vitamin" (something we can't make and need to get from food), it is important in the regenration of skin. I use it in an eye cream, but who knows if it actually gets absorbed. Most skin products don't because they are too large.
Why are you taking it?
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