Taxotere, Carboplatin and Herceptin
Comments
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I have a question about Herceptin. I was dx'd in October, told at that time that I was Estro/Pro Positive and HER negative. So, today I was talking with the MO's nurse and she mentioned the possibility of doing Herceptin as part of my treatment plan. I just pulled up info on Herceptin and from what I see it is used for HER positive cancer. Am I reading this correctly? I'm confused and kind of nervous now...just wondering if after my surgery the dx changed to HER positive and I wasn't told.
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tangandchris - there is a trial going on now giving herceptin to HER2- patients, as they feel they may still benefit. Perhaps this is what the nurse is talking about???
I know someone who is HER2- and in that trial.
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tanga - unless you had a zero result on your Her2 testing, you expressed Her2 at some level. What they are finding is that those who do not express enough to be considered technically Her2+ may still benefit from Herceptin.
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okay, that makes some sense....I guess I didn't realize that there are "levels" of HER2. I'm going to call my doc's tomorrow to see if I can get some more info on this too. Honestly, it startled me because when I was originally dx'd they told me that Her2 negative is much better than positive. I'm just trying to figure this all out and it seems like once I feel at peace with what is happening, something else kicks me in the a---. Sorry, just feeling frustrated tonight.
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Tangandchris - please don't apologize - we go through every possible type of emotion on this board and everyone understands and accepts it!
When I was dx, the onc got the news I was her2+ in a phone call from the lab while I was waiting in her office. She came back from the phone call very happy - said that her2+ is much better than neg b/c we have the herceptin to attack it with. Then i heard that others say Her2+ is worse b/c it is more aggressive.
I swear I think these oncs come up with every possible approach to put a positive spin on whatever the news is that they have to give you. So don't worry about that part of it. Just get the exact news (ask for your PATH report maybe?) and deal with whatever hand you were dealt. I have been here long enough and heard/read enough of various onc's reactions to not put much stock in the spin part of it. Just the facts! (For example, triple negative is better, triple negative is worse, Estrogen pos is better b/c you can take an AI, no it's worse b/c you HAVE to take an AI, etc etc etc.)
IMO, it's all cancer, and it ALL SUCKS! But we have one another to lean on, and that makes it bearable.
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Thanks Amy I needed hear that too.
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TangandChris. I was originally HER2-. With my recurrence, I'm now HER2+. I too have been told that HER2+ is more aggressive, but we are fortunate that there are targeted therapies to attack it - Herceptin, Perjeta and several others.
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Well, I called my BS and spoke to the nurse and she told me pathology was still HER2-, so I'm wondering if what SpecialK said is true. I'm waiting for MO nurse to call back too so I can ask her some questions about why Herceptin.
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Yes, good idea. And if they are indeed wanting you to participate in a clinical trial, that is a whole big deal with lots of info, paperwork, etc. From the sounds of it, she is not thinking of a clinical trial, if she called it 'part of your treatment plan.' For a trial, you'd have a 50/50 change of NOT getting it - as they have the 2 arms of the trial to compare data. She sounded more like she just wanted to consider doing it.
Will be very curious to hear her reasoning. And don't fear - the year of herceptin was NOTHING like being on chemo. I just went for the infusion and went back to work.Please keep us posted on what you learn.
Amy
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AmyIsStrong, i read about Herceptin SE, muscle,joint pain is one of them. So I hope that ache pain is from Herceptin....
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Okay, as it turns out....the MO nurse just assumed I was HER2+.
Seriously.....so she said no Herceptin if I am not. I swear, either I'm just close to the edge and everything is causing me anxiety, or these medical people need to get it together!!!! 0 -
2ndtime4me –I didn’t ice fingers and toes and my fingernails have had no effects.I do not paint my nails because I determinedyears ago that nail polish weakens nails.I did loose two pinky toe nails, but I think that was because they wereinjured in shoes.That has happened tome before so I don’t know if it would have happened either way.Do what you feel in your gut is the rightthing, let them stare.You can alwaysbag the plan later if you decide it is not worth the trouble.
Orange_mama – day17 is when most people loose their hair.Saturday is tomorrow, so I guess this response is moot now. Good luck with your hair cut, I hope you cansave it for your wig.I still have a bagof ponytails from my first chemo.Inever did anything with it.It didn’tlook like as much hair in the bag as it did on my head.
soriya123 –the aches could be from anything.Somepeople take Claritin (OTC) and it helps them with bone pain caused by Neulasta.I have noticed that sometimes my legs fallasleep when I am in one position for a while.I don’t know if that is the drugs, or bad circulation, or just they werein one position too long.
tangandchris- Yournurse really should not be speculating on your treatment plan.Not cool, but I am glad you asked and got theanswers you need.
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Hello ladies...I have a question. I am 13 days out my last chemo treatment and my eyes look terrible and I have a lot of crud in the lashes and also my nose is so dry and sore...will these SE continue on with Herceptin? I was really happy to read in another thread that these wrinkles from chemo will lesson! Can't wait to look more normal as I go back to work the beginning of Feb. Thanks for any advice.
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lovewins the eyes will improve for sure, but it may take some time. I am prone to dark circles and they worsened from chemo. I finished chemo in June and by September I know they still looked pretty bad b/c my brother commented on it (brothers!). But this definitely improved, and I am feeling back to my "normal" eyes now - minus the xtra wrinkles that of course are due to mother time passing. I don't think the extra wrinkles I noticed from chemo remained (seemed due to dry skin), but it is hard to tell what is from chemo and what is from time vs what is just due to all the stupid stress cancer brings into your life! lol
Regarding the dry nose yes that improves considerably but you may want to use a humidifier for some time. As I said I finished in June and it seemed fine by July but then it recurred in the winter months with all the dry air/forced heat, etc. (I'm usually not prone to that issue). I also used petroleum jelly in my nose at night as needed.
tangandchris - that is ridiculous that nurse caused you extra stress during an already very stressful time. She needs to learn to check the chart and not make stupid assumptions. But hey, we are all human, right? Hopefully she learned something from it and will not make that mistake again. Glad you got an answer to your question.
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Thank you dancetrance...I am using lots of face cream trying to speed up the process. I never had issue with my nose either and I even talk funny...not cute funny either. LOL. I am doing so much better, I am so happy to be done with chemo. It hit me the other day I won't look like a cancer patient forever and it was really a break though for me. It is so hard when you are going thru it as far as feeling horrible but topping it off and having your looks go down the tubes in front of your eyes is just as painful. I do not consider myself a vain person either...but all the years of taking care of my skin and not much grey hair was really more of a blow than I thought looking back now. So ladies we can be encouraged as I have read that at least some of our skin comes back and well I can dye my hair if I have to...I am not ready to turn grey! Thanks again dancetrance for taking the time and your encouragement.
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You are so welcome lovewins! I remember so well how awful I felt about my appearance during and after chemo. And if the chemo put you into instant menopause, you feel like a complete wreck! But yes indeed it DOES get better, and you DO feel and look like yourself again - it just takes time to recover and heal. Be easy on yourself.
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tanga - it also depends on what type of testing was used to determine your Her2 status. If you had FISH testing it will result in either a yes or no answer, while IHC results in a numerical score. If you were tested with FISH the reason you may be getting the info that you are negative is that there is no numerical score to give you, or your doc only considers 3+ on IHC to be truly Her2+. As you can see with the info below, with IHC testing you can be zero, 1+, or 2+ and still be considered negative and not receive Herceptin. Currently, if you are 3+ you will receive Herceptin. What some of the newest info is pointing to is that there may be benefit for those who measure 1+ or 2+. Here are the two types information from BCO:
IHC test (ImmunoHistoChemistry): The ImmunoHistoChemistry test finds out if there is too much HER2 protein in the cancer cells. The results of the IHC test can be: 0 (negative), 1+ (also negative), 2+ (borderline), or 3+ (positive — HER2 protein overexpression).
FISH test (Fluorescence In Situ Hybridization): The Fluorescence In Situ Hybridization test finds out if there are too many copies of the HER2 gene in the cancer cells. The results of the FISH test can be positive (HER2 gene amplification) or negative (no HER2 gene amplification).
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So, my hair made it to Day 17. The hair in the bag really didn't look like much compared to what it looked like on my head, you are so right Marsha. But, apparently they'll be able to make me something.
So, I've changed my photo to one taken today post-hair-chop. I can't believe my hair is this dark. Been highlighting my hair for the past 10+ years, color is unrecognizable. And no grey (a little at the temples). I'm hoping when it grows back it won't be grey.
My girls each got a turn with the scissors, which they loved (especially the little one). I think it was a good thing they were able to come with me. We had a good night tonight, went to a walk-through holiday light show in the park (freezing!) then came home for cheese fondue and homemade apple sauce. Feeling much better today than I thought I would.
My lady at the wig store told me to come back if I want her to buzz it for me later. They're really nice there.
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Oh, and by the way, re dry nose. When I saw the nurse at the oncologist on Monday, she referred me to an ENT because I was having terrible, recurring nose bleeds. I had to have some blood vessels in my nose cauterized (sounds worse than it was. ENT numbed my nose first). According to the ENT, there is no such thing as too much saline or too much saline nasal gel. She told me to keep saline nose spritzers in various places around the house/work, and spray my nose whenever I think about it. I've been using the Ayr nasal gel & find that more comfortable than aquaphor. ENT advised to use a more generous amount than you would think. I've also got a humidifier in the bedroom. All of the above seems to be working for me and haven't had a serious nosebleed in a couple of days now.
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Oranje - you are rocking that pixie cut
you look beautiful. I don't post on this thread a lot so I don't recall your last pic. You have beautiful eyes and I bet they are really standing out now.Good for you for letting your children help. My youngest was 12 when I shaved my head. He asked me to turn around, so I did, thinking he wanted to see the back. He said," ok I am REALLY disappointed!!!"
What the heck is he talking about??? I said, "Why?"
He said, " You DO NOT have eyes in the back of your head!!!"
Goofy kid.I am glad your wig shop ladies are nice..mine were too...very helpful and comforting.
Have a good night.
Edited to add that I had lots of nosebleeds on tch, too, I agree with the ent about lots of moisture. I had to keep Kleenex in my pockets and sleeves and purse too...they would just start out of the blue.
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Bailey: Thanks for my laugh of the day. What a revelation when our kids find out we really don't have eyes in the back of our heads.
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Oh my girlfriend did me one better....she was diagnosed the year after me and her teenagers wanted to shave her head. While they were out another friend carefully and painstakingly lifted and separated her hair and actually DREW eyes on her scalp so that when those teenagers shaved her head later that day there were EYES there. It was HILARIOUS and certainly made the best of an otherwise not so great experience.
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(also posted this on Starting Chemo in Dec 2013 . . . apologies for anyone who is reading this 2X!)
Does anyone have experience with flying and/or traveling to higher altitudes during chemo? My family had long-standing plans to go skiing in Tremblant (Quebec), leaving next Thursday. I have been on the fence about whether to cancel or whether to go.
On the no-go side, I'm worried about nosebleeds in the plane & from the higher altitude (I had terrible nosebleeds last round, since then I've been to an ENT and had my nose cauterized and am now doing so. much. better). I'm also worried that if there is some kind of problem and I need my doc to call in a prescription, that I will be in a different country (Canada) and French-speaking to boot and in a small/remote-ish place (Tremblant), and this could be a problem. (LIke the pharmacy wouldn't fill a prescription from a US doctor). And of course, I'm worried that other SEs will blast longer with this treatment (I would be flying out on Day 8, would need to get a Herceptin infusion a day early) and that I will just be uncomfortable/unable to eat/etc.
On the go-side, I'm feeling actually great this past week. WBCs totally in the normal range. I'll get the Neulasta shot again which seems to work for me. I'm totally prepared to wear a mask in the plane/airport. I don't need to ski - I can take it easy, and there is a nice spa in the hotel where we planned to go. And, a big one, my kids would be thrilled. Telling them that we probably would not go on this trip was a major bummer for them (and me).
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Oranje Mama-That is a tough one, I honestly don't know how I'd handle it. Have you talked to your doctor's about it at all? I would have the same concerns as you, however I'd hate to let this damn cancer take one more thing from me. This is tough, would love to hear other's experiences. I personally have a monthly business trip that I haven't taken since my diagnosis in October. I'm not sure when I'll be doing it again and have some questions about traveling on a plane while dealing with all of this. It's not the same thing, but I get where you are coming from.
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Oranje - I'd make sure you have MO's blessing. Mine asked me cancel a trip to Alaska on a cruise ship since he said I was too far from easy treatment.
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talk to your doctor! Does you insurance cover you there should something come up? The least you would need is a perscription of anti biotics. I personally would not have gone that far from home, nor would I have gone on a plane at that point, day 8. You also would need to take copies of your medivasl records with your chemo regiman. Each treatment effected me differently with different SEs
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Oranje,
I understand your dilemma. I can't help in that I have not traveled at all. But I will say your emotional health is as important as your physical. You need ever ounce of positive to fight this things. If this is a trip you wish to take. Make a safety plan. Talk to your MD's. Take all of your scripts filled for any potential SE that you have had. Contact the hotel and asked for info on closest Hospital, Pharmacy..etc. Then contact Pharmacy , expalin your situation and ask what they would need to fill a script if you were to need one. Contact Hospital and ask what they would need to treat you in the event of an emergency...etc Make sure you have international coverage on your cell phone to make and receive calls for the time you will be traveling so you can call your MD's if anything arises. Then go with a plan to your MD and explain how important this is to you and your family and that you have a plan in place and would like their cooperation to make this trip successful. Get the name of someone in the office that you can call and speak to and they will know in advance you are calling from Canada with an issue, so you don't have to go through the "leave a message we will get back to you".
I really hope you can go and then come back and tell us all about it, plus post pics...
Good Luck
Vivian
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When I last saw MO, she thought it would be possible. I'm calling tomorrow to get more of a read from her.
I won't owe anything to the hotel if I cancel tomorrow. Will owe for the whole trip (5 nights) if I cancel later. But I'm going to call the hotel & play the cancer card & see if I can't get a few more days to decide. Plane tix are non refundable, so we're out that $ regardless.
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orange,
If it were me, I'd go, but that's because I'm crazy like that. I don't believe in living in fear of what might happen. Some might call that denial, or stubbornness, or bravery, or strength, or practicality. Thinking about what could go wrong is one thing to consider, but it can drive you crazy and is only what's possible not what's probable. Maybe another question you should ask is how will you feel if that week comes and goes and you feel fine? Will you regret you didn't go?
I think you need to be ready for a plan B, such as staying behind or going home early if you need to. If you become hospitalized in Canada I've heard they don't have a way to bill you because there is no system for that because it's socialized medicine.
I would be extra careful with anything that could expose you to sickness, which sounds like you plan to do. I was feeling great then I went back to work and got the worst cold. It was so awful, I could barely breathe and it would not resolve. Maybe I would not have gotten that cold if I stayed home, but mentally I could not stay home another minute knowing I felt well enough to work. I was happier at work even though I was sick as a dog.
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naiviv, that is an excellent list of todos!
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