TRIPLE POSITIVE GROUP
Comments
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meglove - Good news!!! I had 18. The norm seems to be 17 or 18.0
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Meglove that was me that said it could be fat. So glad it is . Glad about the BRAC being negative. I thought it would be too. I only had 17 Herceptin.0
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Arlene, my Herceptin infusions are like the ones you had in NV. As soon as I go in, they start some fluids, then when the Herceptin comes if the fluids haven't finished, they switch to the Herceptin. But once the Herceptin is done, I'm done, they don't go back and finish the fluids. Weird, don't know why they even give them to me if it's so unimportant that they don't finish them.
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Arlene - I just got the bag of herceptin. Nothin before or after. They wanted to run it 30 min but that gave me some SEs so my doc had them run it 1.5-2 hours and that worked better.0
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I usually get a few minutes of fluids between drawing of the blood and until the Herceptin bag arrives, then 30 minutes and I am done. I was supposed to get Herceptin today, but got a reprieve until Monday due to shingles. Has anyone had shingles on their hand?
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antonia - Ouch!! lago started a thread about shingles.0
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Special K and Lago you took the words right out of my mouth!!! That is what is exactly happening to me. When I wake up it feels like I have been hit by a truck (some days are worse than others) and then after I get moving and do my usual morning walk it gets better. I almost positive I didn't have these aches during chemo,but I don't rememer
Thats another whole story (my memory).
I am trying to find this Acetyl L Carnatine that is suppose to help. I think you recommended it Lago if I remember correctly.Thanks so much for your replies ladies, it makes me feel so much better. On another note, I met a spunky 75 yr old women (in the infusion room) recently who is a 35 year survivor of Triple P. She had a double mastectomy when she was 40, and not a drop of chemo( she didn't want to lose her hair back then, gotta love it
Unfortunately, it came back to her bone in January of this year ( she blames it on the stress of her husband's recent passing) but she is responding well to the Navelbine. Her tumors markers have decreased and she feels well. It's women like her that make my day.0 -
I got shingles several months PFC but on my lower torso, left (cancer) side wrapping front to back but not crossing the middle. They put me in the "time out" room when I got my herceptin. Basically it's an area with several secluded rooms for folks with infections diseases. Mine were drying up and covered by my cothes but they didn't want to take any chances.
Here's the shingles linky Oh and shingles do suck big time. I think it was the worst part of my cancer journey to date.
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Oh and Arlene, I just get the bag of Herceptin only , for 1/2 hour.
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Bucky-I had none of that on chemo and weekly herceptin. Now I am on Herceptin every three weeks and Tamoxifen and feel worse than I ever did on the weekly combo.
I have low dull back ache all the time and left knee and calf pain. I am not sure what is causing it, but I am two weeks past last Herceptin and this is the first day it doesn't hurt.
I was convinced I was having a recurrence. My onc told me I needed to focus more in his yoga class and quit worrying. It was not a recurrence. I would argue that until he walks in my shoes he shouldn't complain, but he uses yoga to help his diabetes, high bp and cholestrol. Had to have a stent put in a couple years ago, went to India for his yoga training and now everything is much better for him.
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Thanks everyone for your comments on your Herceptin. I'm thinking perhaps I misunderstood her and there really aren't any fluids but just the H. I think the fluids help you feel better and have less SEs too (just my opinion) because after this Herceptin, I felt much more tired than with the past 6 Herceptin infusions.
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ArleneA - I get the fluids and H mixed together - but like omaz I asked them to slow it to 90 minutes, and it seems to be better for me.0
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I got fluids, then when the Herceptin was mixed it was hooked up. Took 1/2 hour when I got it weekly, and an hour and half when it went to every three weeks. My onc also had them give me diphenhydramine and pepcid IV before each herceptin. I guess he had a couple of women have reactions, so was cautious. They are both antihistimines that work differently, I didn't realize that about pepcid until then. I would usually get a headache after herceptin only, especially on the days that they ran it a little faster.
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SpecialK: Thanks...guess I'll have to ask at next H session. AND if they are mixing it, I need to have them slow it down as it did appear to have more fluid in the bag than what I had with H only. Another thing I noticed is that they didn't use the little timing machine for the drip but just (I guess) guessing at the time. I didn't see any of those machines attached to anyone having chemo either. Odd to me!
Hey, on another note...I got out today and am working to get back into running. First outing in months so I took it easy and did 4.25 miles but 99% of it was walking but it felt good. I do worry about the possibility of LE but have to continue living.
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ArleneA - Good for you on the running - don't know how you are doing it in this FL heat. I am OK on the treadmill for a couple of miles but can't do much outside until I get an LE sleeve/glove on Monday. I plan to still stay inside though until it cools off. Hubs is running with his work peeps tomorrow at 5:30 a.m. - they carry flags and run to jody calls - "I don't know but I've been told..." They are totally crazy - they run around the whole base doing that!
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ArleneA - My place did not have machines, the new-nurse counted the drips and the veteran-nurses could just look at the drip speed and know how long it will go. I always kept an eye on it though because sometimes it would change speed and I had to have them come fix it.0
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We have IV pumps with timers at my center. Thank my lucky stars they work on battery power since we had a tornado during one tx and the power went out. That was quite exciting - chemo in the dark! The bathroom had no windows, it was super dark in there!
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Special K-5:30 a.m.-I could never be in the military. I just don't function at that time of day! LOL.
Regarding H-I too get fluids when they draw blood, then that same bag continues during the herceptin over about 30 minutes. On the first time, I received benadryl IV, second time, they cut it to half, and third time on, nothing. I am going to talk to them about lengthening the time to see if that helps, or even go back to weekly if that will help.
Shingles-My bff is a nurse practioner, married to a doctor. She is my patient advocate and I am so lucky to have her. Before I started chemo, she told me I should get a pneumonia vaccine and a shingles vaccine. I cleared it with the oncologist and plastic surgeon, got the shots, and promptly got a mild case of shingles from the vaccine! Fortunately, some quick medicine and a couple of days and it was gone. I feel so badly for all of you with a bad case. My little bit was terrible.
I laughed about the "time out" room. I like those rooms. I don't like to sit out in what they call the "family chairs." I know it is bad of me, but I like the time to myself.
One month from today is my implant exchange! Woo Hoo! And, I have an appointment in November to get started on the Metformin trial.
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What is metformin?
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fluff - I don't function at that time of day either - thank goodness spouses are not required to do it! Are you diabetic, or is the Metformin trial being done on non-diabetic BC patients to determine if it is of benefit?
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I thought metformin is used for Type 2 diabetes, but I found there is a trial testing it for use with early stage breast cancer - check it out. http://clinicaltrials.gov/ct2/show/NCT00897884 Interesting!0
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omaz, metformin is a drug for type 2 diabetes ... i take it daily. i've read about the trials and asked my onc about it, but, as usual, he poo-pooed what i'd read about it. i certainly hope the trial proves to be true. i've read a lot about it and it's encouraging.0
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Thanks yaya. Are you feeling better?0
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It is very encouraging and the trial is for non-diabetic treatment. Apparently there is a finding that diabetic women with breast cancer don't have a recurrence as often. When I interviewed one of the oncologists at Simon Cancer Center, she put my name on the waiting list as IU had been accepted as one of the sites in the states to be a test site. They called last week.
I asked my oncologist (not with the Med Center), who interestingly enough is diabetic, and he said that he had just attended a seminar on breast cancer and that was a big topic. Apparently, the trial is far enough along that they don't feel that they are testing to see if it works, but hoping that it confirms what they know...that it does work. He said go for it, that Metformin has been around long enough and is a pretty safe drug.
I hope that I don't get the placebo. I guess if you have some gastric problems early on, you know you have the real stuff? Never thought I would hope to have gastric issues. LOL
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omaz, thanks for asking! yes, i'm feeling good, actually. the biggest s/e after #3 was extreme fatigue. i slept for 48 straight hours except for a little food and potty times! i'm very grateful. how are you??
and about the metformin ... it has done crazy things to my gastric system since i've been on it which is about two years. the big D has been part of my life the whole time, so chemo D PLUS metformin D has been quite interesting. i've learned to deal with it, though!
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I take Metformin for PCOS. 1500mg/XR. I've been on it for probably 5 years.
I was thinking about stopping it before I read about the trial. It's a pretty gentle drug and after the initial GI upset fades, it's been well tolerated for me.I guess I'll stay on it...
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If you haven't checked out this thread you should. The powerpoint is rather interesting for us luminal B gals:
Who should take AI past 5 years?
(Really should say who should take Endocrine theropy past 5 years)0 -
Lago, that is very interesting. I am going to take it in to my onc when I am in there next to see what he says. I had one onc tell me my ki-67 was high and two tell me it wasn't. That is was considered borderline. Go figure.
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What I find interesting (if I understood correctly) is it seems that our risk really is in the first 5 years. No guarantee that we won't recur but it seems luminal A (hormone positive, HER2-) have a higher risk of later recurrence.
Love to hear what your onc says about this.
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Hi Lago，just wondering how long it takes to get colonscopy done? Were you totally in sleep during the procedure? My appt is at 1:30pm on next Thurs and I think I should stop taking food at noon the day before. Hope I can fell asleep on Wed with empty stomach. I told my driver to come to pick me up at 5pm that day.0
