TRIPLE POSITIVE GROUP
Comments
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ms tori -i had neulasta every single chemo treatment, yes it is very expensive and here in canada it is not covered. Ours was because of my DH's private plan. On the subject of sushi, even with the neulasta my white blood cell count was extremely low from day 4 after chemo to about day 8-9. I had to be hospitalized bc of a fainting spell and they told me specifically no sushi because my body could not fight off any infections and unfortunately with raw fish the bacteria level could be high. Just wanted to mention this because even with the neulasta shot your ability to fight off infection might be comprimised.
ms tori - you had tram flap surgery when you had your mastectomy?
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Ms Tori I never took Claritin. My onc had me on Zyrtec the entire time I was on chemo. First nuelasta hurt the worst. If you have pain meds from surgery you might need them. I took Aleve with permission. Next shots I took some Aleve for about a day or two but really not too bad compared to the first.
Be sure to let the Nuelasta shot sit out for 20 minutes. It will sting if it's cold. Here are some sites where it can be injected but do check with your onc. Click the photo for the source linky:
YES call about the echo sometimes things slide. You need to be your own advocate these days.
Ashla the site is now using "cloud" technology applications.
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tonlee love your hair in the pic!
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MsTori - SpecialK is the expert on how neulasta (or I imagine zyrtec too) too helps with the bone marrow response to neulasta. SpecialK can you explain it again?0
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Thanks! I copied and pasted into my notes again. I think I can put a book together of my notes and all of you as the authors for it! Lol!
Lago- thank goodness I can continue my Zyrtec! I stopped it once and got a sinus infection after 3 wks off it! I got the link and saved it. Thank you! :-)
I guess I will have to wait and see how my WBC ct does. My immune system has always been pretty good. Maybe working pediatrics in the past and numerous exposures in hospital since then has built it up? Lol!0 -
Thanks Roze!
It doesn't seem to want to grow much longer than this....I dunno.
Neulasta. I didn't get it. Onc wanted to "wait and see" if I needed it.
3 days after 1st chemo, I was hospitalized for FIVE WHOLE DAYS (omg, the most boring time of my life) for being neutrapenic....totally sucked. After that, I gave myself a shot in the belly after every tx! lol
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I took the Neulasta shot in the arm the hospital did it for me and yes it is very expensive my insurance covered everyone I had to have it the day after chemo each time. Never took anything for the shot though.
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Rozem- yes, I had the non muscle sparing tram flap. Hindsight, idk if I wouldn't have done TE instead. Long recovery and no abs anymore. 30% strength in whats left. But everything was going so quickly, I didn't allow myself time to "think" long term. But I can only move forward, and I try to stay positive. It is what it is now, so I will do whatever I need to do. I just found out my friends wife had same procedure, and she is at Disney doing her 3rd half marathon. So, I know my life will move forward physically. Mentally, it has been so tuff. But I like my new breasts and they really do look like my old ones. It's just my stomach I mourn for, because I liked it before surgery. I wasn't in it for the tummy tuck. Sorry so long, but it helps to talk about it.
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thanks for explaining ms tori im struggling with the lat flap surgery they are suggesting for me (in 2 wks) for the exact same reasons. I am meeting with the PS this week (hopefully, they are impossible to get last minute) to try to convince him to do the alloderm instead. We make the best decisions we can at the time, so difficult but we have to trust they are the best under the circumstances and move on.
i am trying to find a current pic for my avatar but i am realizing that i have been avoiding the camera bigtime the last year! seriously not one pic of me on my own!!!!
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Sol- ooooh, I am not looking forward to this. Thanks for the info.. I am processing what everyone is saying. It's a lot to take in, but I need to learn it fast, because I start soon. I'm sorry your feeling moody. I hate those days when it's time for my monthly, and have no idea yet what it will be after getting chemo. God bless my poor family! Lol!
Ok, so one more thing. My MO said he doesn't do scans. He said because I'm getting the chemo, there is no need for them. I'm sorry if I asked this before and got responses, I just can't recall. Bone, liver ect
Also, just came across this site: drsusanloveresearchfoundation.org
I have her book, but just realized she has a webpage. Checking it out now. Seems pretty awesome.0 -
Soltantio have you told your onc about those palps?! Call don't wait for till you see your onc again. It may not be permanent damage, might not even be herceptin but this isn't something you wait and see. CALL. There is always someone on duty on the weekends.
MsTori my BS ordered scans before surgery. I think he wanted to see if I had mets given the size of my tumor… but said it was because we had time. I think if I had mets they would have done chemo first. But because they saw a few lesions (assumed cysts) they had to watch them. I had 3 more scans after chemo. I'm now done with those since the lesions seem to be totally stable and not mets. My onc doesn't scan either.
I also got a cold maybe once a year. The flu about once every 8 years but I think if I didn't do the nuelasta I would have been nuetropenic. Like I said once those stopped I got shingles and 2 really bad colds in 6 months! Chemo can really mess up your system.
Dr. Susan Love is the Breast Guru.
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Soltantio....
LOL!! Like you're the ONLY one who ever "whines" as you call it. That's what this is all about. We're all trying to figure this out and help each other through this miserable , scarey morass of treatment.....the pollyanna BC forum is probably a pretty lonely place .0 -
Good afternoon everyone, Just me with another question.. Is your first mammogram after treatment a routine mammogram or a diagnostic mammogram? My first mammo is scheduled for November 5th, I was just looking at the req and it says Diagnostic Mammogram.. Is this the norm? Thanks
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Eileen I don't get mammos but I would think all BC would get diagnositic ones. They watch you closely now. I think I would be happy if I was getting the US along with the Mammo all in one shot.0
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Mine is set for Oct 3rd the doc put it as Diagnostic for some reason I found out it maybe because It is not totally one year I wanted it earlier then Nov 29th as we can start getting snow here and did not want to think about driving and doing the yearly mammo.
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Eileen - Yes mine was "digital diagnostic with CAD" too.0
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eileenohio,
Just had my first 6 mo mammo and it was diagnostic. And thankfully normal. but I had a very upsetting incident with my BS office. Ask them how you'll be notified. I didn't ask and was told by the mammo lab that my BS would call me probably that day. I don't have to tell you how scary and anxious waiting for the results are.no call. I called the next day and was told that unless there's something wrong no one would call me. That they can't call everyone.Freaked me out. After much back and forth and unecessary anxiety....I told the PA I wanted a real human being to look t he results and tell me it's okay.
My yearly mammo was due Oct 13 so rather than give me 2 scripts and two appointm ents 1 month apart....the script read diagnostic for both . Insurance won't pay for two routine mammos in one year.0 -
Thanks everyone... Makes me feel better to know that it is the norm..I know I worry too much but the req freaked me out a little...
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BTW..
NY has a new law requiring women be told if they have dense breasts And I guess because of my history.....I now have to go back and do an US of the good boob. The bad boob got changed by surgery and rads so I guess it's not so dense anymore.
Whose idea was it to have a lumpectomy anyway? Oh right....it was my BS who can't call me with my mammo results....F... this.0 -
Ashla if you're unhappy with your BS then why not change? BTW the place I used to get my mammos always sent me out the results in the mail… but not always to my doctors!
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WOW - 5 pages since I left...
6am Monday morning here in the hospital after my BMX with free TRAM on Friday. Past few days were really challenging with meds and nausea :-/ Seem to be on top of it now though.
Catheter came out yesterday and hoping at least 2 drains will come out today.
Surgery was 12+ hours I gather but all went well. I had a positive breast node last December and I had refused the ALND. Done chemo, herceptin, a few rads and Tamoxifen since then and BS saifd there was a small group of breast nodes he removed with the forst one looking a bit "solid". Pathology will hopefully show dead cancer cells - if it shows live cancer cells we will know that the txs so far have not completely worked. Should know pathology on Thursday.
Not panicked yet... Breasts look good :-)
Jenn0 -
Yay Jenn! BTW complete response is not typical so don't panic if you don't get that. General anesthesia and pain meds both give my nausea. I was only under for 6 hours so I can't even imagine how nauseous I would have felt after 12! That has to be the worst.
Yay for good looking boobie prizes!
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Lago....
My BS and his team were my ROCKS...they were my strongest and most reliably compassionate accessible MDS. I got my Mammo, US , prelim biopsy results and MRI within 2 hours of my first visit to the breast center. My BS called me personally about every result. I've always joked with him about his support staff nd how lucky he is to have them . I guess I was spoiled so when an insensitive young receptionist stunned me with that attitude it was very traumatic. It will take time for me to forget it. Right now I 'm feeling very let down .
I doubt he knows anything about it but I may tell him how I feel at some point perhaps when it's time or my next mammo.0 -
My BS has an office in the mammo suite. My mammo is scheduled for 3PM and I will see the doctor at 3:45 for the results. So glad that I will get the results immediately..
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HEY Jenn! Speedy recovery....... Plenty of time to rcover before the Playboy shoot next fall.....
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Oh Ashla I didn't realize it was the support staff. You know how I feel about the where I was treated. MDs and nurses are the best. Most of the support staff can go suck it as far as I'm concerned except at my PS's office. Remember when I was given someone else's order for a blood test and the wrong procedure order for my biopsy (which the sucky support staff confirmed the wrong one).
I never trust my BS's support staff. Always ask to talk to the nurse or doctor.
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Eileen...
My BS has an office across the hall too. That's the way to do it. I wasn't due for my first 6 month visit with him till January...did your BS schedule it that way for that reason? My BS's PA gave m the script for the mammo but told me nothing else. I just assumed because they had always called me with results before and I'm still in active treatment that it would be the same. And the mammo tech told me the same thing. If you have an appointment with the dr, he'll have the results in a little while. I said I didn't and she said he'd probably call later.
Right now my plan is to find out my BS's protocol on this and if I have to wait for results in the mail I'll find a mammo lab that will give me my results immediately.0 -
Lago...
So true about asking for the doctor or nurse. Except or scheduling I really never called them for anything before. I waited for my visits to ask questions.0 -
Ashla, My BS has her Primary office at the Main Campus of the Seidman Cancer Center,she is only at the Center I go to on mondays. Actually I assumed that getting the results immediately was the norm for follow up post lumpectomy so I never gave it a thought as to why it was set up this way..
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I've had a mammo, one, since diagnosis two years ago, and am due my second. Overdue actually by about three months.... Anyway, I get the regular old mammo....what is a diagnostic mammo?
Edited to add: I don't have much faith in mammos for me. It never showed my first lump....and you could look at my breast visually and see it!
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