TRIPLE POSITIVE GROUP
Comments
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Bell...I had herceptin with taxol weekly for 12 weeks. It took thirty minutes when they did it weekly at a smaller dose. Then I went to every three weeks and got a triple dose in the same 30 minutes. That did not work quite so well. He lengthened the time of infusion which helped a lot. Also said I could continue it weekly if I wanted or every two weeks. I was tired of going weekly and the 90 minutes was helping, so I just continued with it.
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Same for me when I received them weekly, except for the first one or two, they infused over 30 minutes, then when I went to every 3 weeks they infused over 90 minutes. I always got a head ache, except for the one time while I was receiving it weekly the nurse, accidently infused over 90 minutes - no headache that week.
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Speaking of herceptin only, did anybody feel any different after getting the triple dose every 3 weeks than they did getting the weekly dose--not counting the infusion time.
I now get the weekly herceptin over 90 min because when I get it in less time, I get VERY tired--like yawn the entire time and have to nap when I get home (and I never usually nap.) I still feel somewhat woozy even getting the regular dose over 90 min, and I'm concerned about what will be when the concentration of herceptin is tripled. Btw, these woozy feelings have definitely intensified over the 18 week cycle.
I have my last weekly herceptin this week (YAY!!!!!!!!!!!!!!) and should start the dose dense herceptin on the 16th.
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cgesq, I really think I should have kept up the weekly herceptin dose after chemo. It was an option for me but i didn't really think about it. I also think it would have been better to be on a 90 minute infusion now that I know what I know. I don't think I would have felt so tired. My herceptin only dose (the ones after chemo) was 60 minutes.
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My symptoms stayed the same, but I was getting the weekly over 30 minutes, then the every 3 week over 90 minutes, I don't think they would want you to triple the time if you are already at 90 minutes, in order to get it every 3 weeks. Gosh, talk to your chemo nurses, and your Onc about that. I found the chemo nurses are a great source of info. I volunteer at the infusion center, and now they added tylenol to the pre-meds for herceptin, I only got benadryl and famotidine (Pepcid) before herceptin.
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Linda, my husband and I just watched your daughter's video. Wow, that video has had close to a half million views!
What a beautiful young woman she is!
Thanks for sharing!
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I got the weekly Herceptin over about an hour, so I really don't understand why they want to give the triple dose in only a half hour. For my first triple dose I asked for an hour and it's not a problem...but I'm going to have to remind them every time. I don't get any premeds, just saline.
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I must be one of the few who doesn't mind the 1/2 hour infusion for the 3-weekly dose! I have always had it over 1/2 hr after the first one that they did slower. I don't seem to have any immediate SEs. I am tired that evening (I always get the last appt at 4.00pm on a Friday), and I get very mild shooting pains up my leg bones the next day and then dry eyes and the permanently runny nose for the next 3 weeks.
Nothing major apart from those and they aren't enough to make me want to spend any more time in the chemo suite than I have to! I hate being there.
As I am in the D-Care Trial I get an annual CT and a bone scan to check for cancer coming back/spreading. My first annual ones are tomorrow and I have not been able to stop thinking about them for days. Major scanxiety! Not sure if I will get the scans and reports to take with me or if they will go straight to the MO (who I see on Thursday this week) since sometimes I get them and sometimes I don't.
Just as well I also have a psych onc appt straight after the scans tomorrow...
Jenn0 -
Jenn, good luck with the scan!
I think my lowest mental period during this entire cancer experience was the time period between being told I had to have a PET scan as a baseline and the day the MO's nurse called to say the scan was okay, which spanned December 19 through December 31 (afternoon).
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I too always got my Herceptin in 30 minutes every 3 weeks. I had little to no SE. I just noticed I was a little less stiff and my hair grew faster after Herceptin stopped.
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Linda - just watched your daughter's video. What a special thing she did for you! She is beautiful and brave and it is easy to see that she gets it from her mom!
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Linda, Great video!!! You have a beautiful and brave family. Thanks for sharing.
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Bren, A friend gave me a beautiful tote bag with Philippians 4:13 on it, and I see it on your signature. Such a calm assurance!
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Thanks for watching her video - I do have a very special family, and they have been wonderful through this!
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Linda... The support of ones family makes a world of difference. So glad you have it!
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LindaKR,
The video is so touching and Amazing you have a great Family thanks for sharing. You can tell there is defiantly a lot of love there. Sorry had to wipe away some tears.
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Am I the only one who can't watch the video? I did see your DD's picture though, and she is beautiful. Probably the stupid iPad won't let me see the video.
I also did the herceptin every three weeks over thirty minutes without problems, never had a runny or bloody nose. I was stiff, got a little better when I was done and now feel about the same again on tamoxifen.
Went to Baltimore for the start of the vaccine trial today. I am so confused. I got injected with just the peptide today and a control. Have to go back on Wednesday for either the vaccine or the placebo and the GM3 or something like that which I was told is similar to nuelasta. I am still not understanding all these three different things. Ever since SpecialK compared it to the women who did the trial for herceptin, I feel really privileged to be taking part though. So far no reaction, just a small hole where they did the injection.
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kay g - the first thing they do is a skin test - I think that is what you did today - they are checking to see what reaction you have -which will be repeated after the series of injections is done as well. Based on your histological type - either A2 positive or negative - you will be sorted into one of two groups. If A2 positive you are sorted into the GP2 peptide arm where you will either receive the GP2 peptide injection plus sargramostim (immune system booster similar to Neulasta) in two injections - this is the active vaccine , or you will get two injections of sargramostim, which is the placebo. If you are A2 negative you are sorted into the AE37 arm, which works the same way, one injection of AE37 and one of sagramostim, or two of sargramostim.
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Linda I love that video--what a darling u have---Wonderful.
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Kay g....once you get going, if your nurse leaves the room, snoop at the label the bag is in. You might be able to tell if you are getting the actual vaccine or,placebo.
Cgesq....I felt waaay worse on just herceptin, triple dose in 30 minutes. So much so, I went to my Once and told him I felt worse than when I was having chemo and herceptin. That is when we adjusted I fusion time, and he threw out the weekly or every two week options. He said the important thing is to get it consistently, not specifically when.
Linda...can you post the link again, I must have missed it.
As this is the month with my biopsy surgery that identified the tumor, and removed it with clear margins, I consider this my two year anniversary. With that comes appoint,nets with all my docs, PS tomorrow, then Onc, then BS. Got my questions ready to go. No s and for me though, unless I can talk the BS into something. Onc doesn't buy into them. I am going to,shoot for the tumor marker blood test though. Lol. He might go for,that.0 -
The results for today.... drumroll...
CT scan - clear except for a spot of fat necrosis in right breast (not unusual after the surgery I have had)
Ovarian cyst removed two weeks ago - benign
Bone scan - no sign of mets but widespead arthritic changes
We've opened a bottle of bubbly :-)
Jenn0 -
CONGRATULATIONS JENN!!!!!!
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Lee - thanks :-)
Never thought I'd be happy enough to open a bottle of bubbly after hearing I have widespread arthritic changes at the age of 47yrs...
Jenn0 -
I keep thinking of what that one blogger wrote:
"I lost what my sister-in-law calls the luxury of careless living"
OTOH, cancer makes us appreciate the simple things in life (relatively speaking)...like widespread arthritic changes.
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Yay!!!! Jennt28!
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Yay Jen!
BTW my place doesn't do tumor markers. Both my onc and BS believe the are unreliable. From what I've read they work for some people and not for others.
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Jen! WOOT WOOT!! That's AWESOME.
Arthritis, um, not so much...but it can be managed (I hope!)
Congrats. I'm so happy for you
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Yay Jenn! Congratulations!
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Jenn- Yay!!!!
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Jenn - WAHOO!!!!!!!!!!
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