Taxotere, Carboplatin and Herceptin
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It may depend on how long ago they were tested. I was tested in 2009, when originally diagnosed. But then last year, the lab called me back and said there was an additional test for some other sort of mutation (still BRCA but some sub-set of it, not really sure exactly) and that my insurance would cover it. So I did it - tested negative for that one also.
So the tests may be more modern since they were tested?
On the other hand, I was told that they know there are other mutations that can run in families, but have not identified them to the point of testing yet. So maybe in time.And furthermore, I was also told that the families with the mutation can REALLY see a huge pattern running through them. What you describe is a few within the 30 cousins but not a huge amount. (Of course even ONE is too many, I don't mean to minimize it at all, I am just talking from a statistical perspective.)
Congratulations on (almost) finishing herceptin!
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I appreciate your input. The last 3 tests in my family were done in 2013. I always thought I that it didn't run in my family, but now I'm wondering. I do wonder if it's a gene they haven't identified yet.
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sasha, I tested negative for BECAUSE 1 and 2..However my family history is not great. My Mom, 3 of her sisters, My Grandmother all had it. My Geneticist said it's not Genetic but FAMILIAL. That translated to "We just haven't found the gene yet." LOL So there's probably BRCA 3, 4, 5, out there.....
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sunshine, the EMLA cream is by prescription. Have your MO call it in so you can have it before you go to your 1st chemo. I did mine like Amy, except I just folded the plastic wrap into a square instead of cutting it. The 2 times I forgot to put it on during Herceptin only, I sure was sorry.
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I learned a hard lesson at my last treatment. You have to keep a close eye on that EMLA cream and that little piece of plastic. I had put on the cream over an hour before my visit, but my clothes or something must have pressed the plastic and somehow squished all the cream away from the port without me noticing it. By the time she shoved that needle in, it was like I hadn't put on any cream at all. OUCH!!!! Live and learn. This was my what, 22nd time (at least!) having my port accessed? And I'd never had that happen before. Believe me, I'll be keeping a closer watch on it from now on!
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I did the Emla an hour prior and then asked them to use the Hurricane spray as well. I have an extremely tiny port and it is a bit difficult to access, so I like to use both.
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Try saran press and seal to go over the Emla. That works pretty well.
Also sunshine 36… I take to stool softeners, two a day and two days before and three days after my chemo I take two doses of FiberCon as well, the constipation, if you get it is really bad.
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for a week or so after I got my port I felt like I had been punched in the chest. Once that muscle soreness went away, I didn't notice my port at all.
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I agree with the stool softener...constipation was one of the hardest things for me. And also if you are getting the shot ( I can't remember the name) the day after to help with your immune system it really helps to take Claritin, not Claritin D though. This will help with the aching bone pain.
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Seconding using the "emla" cream on the port. I cover with a fairly big piece of Glad Press N Seal and it sticks to my skin. My center doesn't have any 'hurricane' spray so if I forget, I'm screwed.
And thanks for the reminders. I go in tomorrow for my Herceptin infusion and I hadn't set out the cream.
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Minus two...I have started to carry my cream in my purse cause I am worried I will forget! I have Herceptin on Friday.
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good advice from all for those just starting!
I did the cream with the plastic wrap square 1 hr before - didn't know how well it worked til I forgot once!!
my port is no problem now - i was more freaked out by the tube to the vein - wasn't expecting it & mine is still noticeable yuk! but it certainly does make the treatments easier
i drank the flavored water from Walmart - i tolerated that better than regular water - eat what you can when you can and you will keep the nausea at bay - i never threw up either
the bad taste in my mouth was the worst - I used a lot of Biotene products - toothpaste & rinse
use the mouth rinse they give you - it's nasty - but i used it faithfully & didn't get any mouth sores
mine were every three weeks - treatment Wed - by Sat afternoon I was down for the count for a few of days - but by the 3rd week I was coming round to normal & ready to go again - got a little worse each time
music from my Ipod kept me from going cuckoo @ bedtime ( at night time all the doubt-demons come out to play)
that's all I can think of for now - just know you CAN do it - but never be afraid to ask for help!
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not buyingit, yeah nights can be bad. If you can just forget about sleeping until you can sleep you will fall asleep easier. I know that sounds weird. But if you don't worry about it. It can just be easier to manage. Take naps in the afternoon then you can still manage the day without dragging.. do what you can to get thru.
Much love
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So true about the sleeping...when the weather was nice I would take a walk around the block before I went to bed and that helped a lot.
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I had my port placed yesterday. I had been so caught up in worrying about anesthesia (I had never had it before) that I underestimated the pain after. Last night was rough, today better - down to dull pain when I move/bend, but my i feels like Mike Tyson punched me in the neck. Owie!!
Still tentatively scheduled to start chemo tomorrow although my insurance is dragging their feet with the final authorization. Grrr. So much "waiting" it feels like sometimes.
Xoxo
Jen :-)
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sunshine sometimes insurance can be a pain. I hope the clearance comes is quickly for you. Sorry the port is a pain! Did they leave it accessed? I got my port 2 days before chemo and they left it accessed. It might have hurt a bit more but it beat the following week where they tried 4 times to access it! LOL my DIL got her port yesterday too. Just if it hurts a lot you can call your surgeon office and ask what you can take. My pain went fairly quickly but there were at least 2 days spent in recliner. Much love.
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moon... So sorry, DIL too?
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typo. Sister-in-law. She's Stage 4. Starting Taxotere. That's a really rough on in regular IVs
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moon.... Still sorry and I can't really imagine regular IV versus a port for this poison.
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yeah. I tried to tell her that but she is a real relative of my DH! LOL. But i am glad she's got one now. And I'm sorry to. She almost 10 years younger than I and had her first bout with BC 6 years ago. She had a LX and Rads.
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I have a friend that did TCH without a port, IV only, her veins her toast. They had a really hard time giving her the last few herceptins, the nurse was really upset, but she did do it. She had a mental thing about the port, said it made it seem too serious to her! I can't imagine not having the port. I think the cancer center now requires it for his regimine!
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well making it through but never being able to use your veins again because they are sclerosed is idiotic! You still need them for the rest of your life for Pete's sake!!!
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I know!!!!
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yeah. I told her that. This time her doctor really pushed. Thank goodness. Oh well I guess to each their own! Even if we think that isn't the way to go..... LOL
Much love to all.
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Sunshine, best wishes for a minimum of SE associated with Chemo...it isn't easy for anyone....but it is all do-able...keep on top of the side effects. I just finished my year of Herceptin and got my port out!!!!!! Finallly done.....it's been a long, long, long, year....but I have some hair and things are getting back to normal. My biggest fear is return of the cancer at sometime since I only had a lumpectomy. I don't want to do chemo again....ever....but I would if it comes to that...considering prophylactic mastectomy....wonder if it would be covered....hmmmmmm???? Any thoughts?
Anyone with HER POSITIVE that have had a recurrence? Would love to hear your story through a personal message...I just am curious to hear from you all. Thanks!!!! ; I really feel like I need to know what it's like to go through it again.....which would be worse, mastectomy now or recurrence and chemo...etc....
Kathy
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question, ladies - on Herceptin thru August - originally suppose to start the 5 yr pill when i was done - now says he will start me next month. I am not anxious to start since I have heard it can have some nasty SE's. Anyone to this point yet? When did/do you start?
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iluvtoscrub - Sorry to report I have had a recurrence. Originally DCIS with BMX. Done finished including reconstruction in 2011. Supposedly DCIS isn't even really cancer anymore (huh?) but they "got everything" including clear margins & clear SNB on both sides so no further treatment. 2 years later - IDC, so chemo & ALND surgery & more chemo & rads. They don't test for HER2 with only DCIS, so I didn't find out until the recurrence. Now I'm done (?) except the Herceptin for a year. I did have Perjeta added to my first 6 chemo treatments, but since a possible side effect of Perjeta is neuropathy & I'm really having problems w/that, I've decided to hold off on more for now.
I'm glad I did BMX the first time since I didn't want to deal with it again. My docs were all devastated that I had a recurrence (or maybe mets) & I certainly don't blame them. I was just 'odd man out'.
It's my understanding that prophylactic mastectomies are covered, but not sure since you've already had a lumpectomy. Of course we all worry about "the next time", but I think I'll have to let it go and try to move on with my life. Scary.
Notbuyingit - I'm ER/PR negative so Herceptin is my only alternative. Sorry I can't add any info.
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notbuyingit - I started Tamoxifen after I finished rads - but I still had 4 Herceptins left at that point. My MO fessed up that the main reason she tells us to wait until after rads is so that we don't blame the rads SE on the Tamoxifen.
And my RO basically concurred that it made sense to start one thing at a time so you could manage any SE more intelligently. But since you've been doing Herceptin for so long, I don't think there would be a reason to wait til after Herceptin is finished before you start the Tamoxifen. Lots of people start as soon as they recover from surgery or finish chemo.
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iluvtoscrub - I'm sorry to say that even a BMX wasn't able to prevent me from getting cancer again. I had DCIS in 1997 and went the BMX route. 12 years later I found a lump in my right non-existent "breast". The lump was actually growing into my pectoral muscle. So they removed that and replaced it with part of my latissimus dorsi. My MO didn't call it a recurrence, but a new primary. Because cancer doesn't sit around waiting for 12 years. My breast surgeon was floored. He said the chances of me getting cancer were less than 2%. So after my new primary in 2010 (stage 2b), surgery with clean margins, 6 rounds of TCH, a year of Herceptin, 33 rounds of radiation, and a failed but valiant attempt at taking Arimidex, I still had a recurrence diagnosed this January. Nearly made it 4 years. Now it's stage 4 with lung and bone mets. The good news is that I've responded very well to TCH+Perjeta. Lungs have nearly completely resolved, and nothing is lighting up on the PET scan anymore. One more chemo, then I'll be on Herceptin and hopefully Perjeta (if insurance approves) for maintenance. And back on Arimidex, like it or not, I'm sure.
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Oh Carol Sue - so sorry to hear that it hit you a third time. I'll keep you in my thoughts & hope you'll get to add the Perjeta to the Herceptin.
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