TRIPLE POSITIVE GROUP
Comments
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dance - I did not have any premeds (during chemo I received Tylenol, Benadryl, Decadron, Aloxi) once I went to Herceptin only, just the Herceptin infusion. I had also read no Tamoxifen and Benadryl together, but I think that would pertain mostly to regular OTC use once past chemo. Generally speaking, one is done with premeds/chemo by the time hormonal therapy is started.
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I'm on Herceptin and Tamoxifen only now as well - no premeds. Did you have a reaction with Herceptin? Perhaps that is why they are continuing the benadryl.
I haven't heard anything negative from my onc regarding caffeine; he's generally against alcohol, but as long as I don't have too much, it's fine with him.
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No, no reaction, but I do have a history of lots of new reactions this year to various meds. I am going to see if they can try weaning me down and see what happens. I am zonked during tx and feel tired the rest of the day.
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Sounds like a good idea dancetrancer. I'd ask them why you are getting it at all!
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I started Herceptin only a couple of weeks ago - no premeds!
Jenn0 -
WOW...I had premeds at my first infusion. I had steroids, nausea, tylenol, and benadryl. Before going into the infusion, I asked for no pre-meds because they said there are no side effects for most people. My blood pressure went way up, I got the shivers, headache, and felt sick to my stomach...plus legs hurt. It's not as bad since changing it to a weekly infusion and slowing down the infusion to 60 to 90 minutes. This last time (no pre-meds) I could hardly stayed awake on the 45 minute drive home. I took a 2 hour nap later yester afternoon, easily slept for 8 hrs, and woke up only to go back to sleep for 3 more hours. Herceptin pretty much wipes me out the first day. I usually take benedryl the first night after herceptin, but last night was first night not to. And to add after the infusion yesterday, and last night I was itchy all over. And I felt different when the Herceptin was coursing through my veins. I had this faint weakness feeling.
I'm curious what Herceptin copays are?
DT...Did your oncologist suggest you do wkly Herceptin? My dosage 128mg...is that all Herceptin or is partly saline fluid?
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Fluff, glad I made you laugh. My job here is done.
And if anyone tells me I can't have coffee while I'm going through chemo, trust me, ALL hell will break loose; it will NOT be pretty. I can live without grapefruit, but coffee runs through my veins.
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evebarry - I requested weekly infusions and that they be done slowly, over an hour. I just feel like it will be easier on my heart, esp. after talking to some other ladies on the Herceptin thread. There is no data or proof to back that up, though.
Herceptin comes as a powder - they inject a certain amount of saline in it, I forget the amount. The whole vial then becomes 440 mg; they withdraw your dosage in mg for the day from that, refrigerate the rest until your next treatment. I don't know if they add extra saline on top of that to the actual infusion bag or not.
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dance, are you sure you're not a MO? You have some serious knowledge!
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vickilind...I'm sure it is not an absolute requirement to stop coffee...but it was suggested to me to limit caffeine, since it is a diuretic. You may want to increase your other fluid intake (on top of the suggested extra fluid intake) if you are going to keep drinking coffee. I fully understand. I was a die-hard coffee addict! I weaned to green tea, then finally to decaf green tea. It wasn't easy!0
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LOL vickilind...no, not an MO! I'm just an obsessive-compulsive researcher with a medical background (physical therapist). The more I know, the better I feel like I have some control of what is happening to me. My MO is great. When I bring studies in to him to discuss, he says "I love it when you do this". He is very tolerant of me!0
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Dance, I drink much less coffee than I used to; 2-3 pots by myself. Now I'm down to 3-5 mugs a day. I also used ot drink lots of Dr Pepper the rest of the day. Since my dx, if I have 1 DP a week it's a lot. Now, water (at least one glass per day) and several glasses of iced tea. I know I am supposed to drink LOTS of fluids the day before and day of so I will.
And I still say you know Way Mucho!
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Here in Australia the Herceptin dose is made up and it always then comes out of pharmacy in a 250ml infusion bag with the remainder after the Herceptin dose being saline.
I know this now because my site were supposed to keep giving me weekly infusions rather than moving to 3 weekly the other week (due to me having pneumonitis). Despite my MO changing the script order the pharmacy used the old "move to 3 weekly" order and I didn't find out until last Friday when I went to go up for my weekly and they asked me why I was coming 8-0
MO was away overseas - will be interesting to see what she says at my appt next week! At least I now know I don't get any major SEs I guess.
Jenn0 -
Vickilind I used to drink 1-2 cans of Diet Dr. Pepper a day since 1983. I gave it up when I started chemo for 2 reasons. Soda can upset your stomach. I knew chemo was going to do that. Also I was "diagnosed" with ostepenia just before BMX. Since I exercise I thought maybe that contributed (granted my D was in the single digits a year prior). Of course now I'm reading that slight osteopenia for small framed women may not be accurate. The machines just can't read smaller bones accurately.0
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Dance after my first TCH I declined Benadryl and never took it again, even with the TC. I thought the SE from it were worse than the chemo!
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Eveberry- I would suggest that you speak to your doctor about the itching after the herceptin. If you read the literature on Herceptin, a significant number of people have allergic reactions (seems I remember 25%) of course they don't tell you that, hence the benadryl. That is the way my allergy started and escalated from there even with Zyrtec, Zantac, 50 mg steroid, an inhaled steroid, 75 mg benadryl, Aloxi and Symbicort. On my last day of Herceptin I rec'd 225mg benadryl to stop the shock and 125mg more of the steroid. Please be careful with the benadryl refusals. Herceptin is one of the best things going for us triple+'s.
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moni - I so appreciate your input. With my history of new allergic reactions starting this year, maybe I should just stick with the fatiguing benadryl...yet it will interact with Tamox when I start taking that...not sure what I will do. Will talk with onc. Thanks.0
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Hmm...is the itching a sign I could be developing an allergy to Herceptin? I didn't notice as much itching at past infusions. How can something be good for us if our body is reacting to it? How do I know it's working? I usually do take benadry tablet at night of the infusion. This week was the first week I didn't take benadyrl as to why I noticed the itch.
DT...gee...I have no idea how my Herceptin is made, powder or does it come in the baggie they bring into the infusion room? I still am a little confused as I thought those who take it weekly got only 2 mg, and 6 mg for those who came in every three weeks as to why 128 mg of Herceptin weekly.
I'm calling in to cancel next weeks infusion due to work. I wonder if I could double up on it the next Monday?
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Eveberry- Benadryl works by decreasing the immflamatory response that your body produces in response to a 'foreign invader'. Since Herceptin is a monoclonal antibody, it has had more that average reactions. Usually it can be controlled with decreasing the body's response. Maybe your MO would let you go to the three week infusion schedule.
I felt very strongly that Herceptin was the best shot that I had in preventing recurrence, and attempted everything to preserve it. Unfortunately, the only way to tell if it is working is you're not relapsing at this time.
Herceptin, as with most medicines, is a powder that is reconstituted by the pharmacy, first to a vial concentration then diluted further to a bag concentration.
Allergies can develope to anything, good for you or not. Sometimes I think that chemo has messed my immune system up completely, but I have had a lot of allergies already. Since I am allergic to almost every tree and plant there is, it was not surprising that so many cancer meds triggered allergic response. This year has been a lesson in trying to avoid allergens! My list is now so long that I have to carry two computer printed pages to give to new dr's, as I can't keep the list in my head any more. I started to research Herceptin and was amazed that so many people had had reactions to it.
I sincerely hope your response goes no further.Please be careful; this medicine is so important.
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moni I think it took me 3-4 months PFH (post final herceptin), 1 year PFC to get my immune system back to were it was. In the past I was the person in the office that might have had 1 cold a year. I remember having a horrible one last August followed by another in November. (Last Herceptin was September). And of course the rather intense case of shingles last April. It will get back to where you were but it might take some time.0
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Lago- boy I hope so! My last Herceptin (12th of 52 scheduled) was in July/11, and it has only gotten worse. The allergist said it is a self defense mechanism going to the extreme and will most likely not change. Before cancer, I was one of the 'go to doctor if you're dying only' people. Aside from allergies and asthma, I never had any problems and had faith in my body to heal its self! Talk about a lifestyle change! Oh well, it is what it is.
Recently, I am now qualified to receive a MA drug for the asthma. Yeah, me thinks not.
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There are a few studies on the advent of allergic reactions with menopause...I saw them waaaay back in 2010 when I started researching. The study I read suggested that a significant percentage of women have adverse reactions/allergic reactions while peri and postmenopausal they never had before in their lives...like nuts, ibuprofen, etc.
Perhaps for a few of you this might be the case...chemopause may be bringing this on?
My Onc told me the reason for the Benadryl wasn't the Herceptin, but Taxoterrible. Taxol/taxene is taken from some sort of tree (again I knew it then, now I don't need it!) and they based our Benadryl on the old Taxol txs.....because some women were allergic to Taxol (tree)..but taxoterrible is actually a WHOLE DIFFERENT PART, but there isn't an any current research YET on taking it without Bendadryl.... when they started substituting it in place of traditional taxol, they just transferred the pre-meds too...because studies showed they worked with Taxol.
He asked me to take it because if I was somehow allergic to the taxene I would still have symptoms, they wouldn't be severe but they'd still exist is a more moderate form.
The next tx I asked to skip it. The nurses were very uncomfortable with that, but I made that choice because not only did I not have a reaction after the first TCH, I didn't even really feel bad at any time in the days to follow, except for being tired from the Benadryl. (Which for some strange reason takes me about 24 hours to shake off.)
So I declined it at the 2nd tx, Onc okayed it, said to just watch me.
I was fine. Never had a problem. And best of all was able to spend the rest of my day productively at the gym, or going to the grocery store, whatever. And no one had to "come with me" to chemo like I was disabled or something....not that there is anything wrong with it but I didn't want to be there...so I didn't want anyone else to have to sit there either...
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Taxotere is derived from the Pacific Yew tree. I think from the needles. Taxol is from the bark of the same tree.
I was on Zyrtec the entire time on chemo but was told to stop once chemo ended. I wonder if I even needed it. I got benadryl only at chemo infusion time. The first chemo I was a space cadet for a week. I think from the Zyrtec but once my body got used to it I was fine. I'm sure if I took it today I would be back to space cadet again.
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Ton...interesting about menopause and allergies. I have upper respiratory seasonal allergies that only showed up after menopause. Never thought that had anything to do with them.
Peggy
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Just curious as to how many of you may have had Taxotere and how long it took for your SE to show up - several on the March 2012 board have started Taxol with horrible SE and a few on Taxotere. I am morning #3 past my first Taxotere plus Herceptin. Feel like I am waiting for the other shoe to drop.
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kltb04 - I had Taxotere with Carboplatin and Herceptin. I had infusions on Thursday and usually my bad days were Sunday into Monday. It wasn't bad, felt like the flu with aches.
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TCH here. Bad days Sunday through Wed.
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kitb04- my first reaction with Taxotere was with the beginning of the infusion. Chest area got red/splotchy, hives, swelling of my throat, etc. even with Benadryl 75mg beforehand! Needless to say, never got it again.
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Peggy,
One of my gal pals is in menopause now, naturally, and she is allergic to a bunch of different things, while before she was allergic to nada.
I wonder if maybe that is where my Sulpha allergy came from. I've never been allergic to anything, but during chemo my PS gave me sulfa and it about killed me...couldn't breath, ER visit, the whole sha-bang. They said I was VERY allergic to it...but I'm sure I've taken it at some point in my life before without complication.
Oh well. I'm sure there will be studies aplenty on it in about 30 years....once all the boomers are done and truly through menopause....
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klt - infusions were on Thurs, bad days Sun-Tue., with some random issues continuing for a week or so - but nothing that kept me from functioning. I think Taxotere is a little more intense than Taxol, as some who have issues with Taxotere are switched to Taxol, but everyone reacts differently - you may do very well and your shoe may not drop! Hoping for that!
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