TRIPLE POSITIVE GROUP
Comments
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Thx Lee !
Not leaving till next weekend. All depends on the weather. I lived in Florida year round from 2005 thru 2010. When I first got there I was in the pool and everyone..in the pool was talking about their illnesses. Diabetes, heart attacks and every kind of cancer you can think of.
I had to leave the pool.
I went home and thought about it for awhile and I realized that instead of being depressing....it was actually reassuring. These people ...most much older than I was....had faced all these deadly illnesses and were still there really enjoying themselves .
I am not one to lay about in the sun but I just may do it . My bones feel very weary right now.0 -
On the AC-TH I am one and live in Michigan my doc told me it was a bit stronger and slightly % higher and she felt lets give this everything we got to kick cancers A$$. I said If this was you what route would you do and she said I'M young enough and healthy enough she would do the AC-TH.. So I said let's do it. I trust you and let's start as soon as possible... Have 4 more herceptins then I will be done. I'm already don't like the feeling of not being treated with anything or not seeing my doc only every 3 mo after herceptin is done scares the crap out of me.
On a different note is anyone still in a crying jag mode at times yet? I have my moments yet and thought it would get better but it has not I cry at least twice a week out of the blue don't know why. Something just triggers what I have been through this past year and then bam I'm crying.
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Bryona I had nuelasta as did many others. First one had some bad back bone pain but took meds (over the counter… granted I do have a high tolerance to pain). I never got sick till 2 months post chemo (shingles) then 2 more colds. The nuelasta did its job for me.
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Ashla, have a great time in FL. I'm jealous - the weather in Jersey sucks & is so cold
. You're lucky to get away. I'm sure if you have a question for your MO while you're away, you can call in, so don't let the separation anxiety ruin your good time. You can always pop in here when you need a friend.Ang, yes, I still have random crying fits. I had nipple reconstruction last week, and this past week I've had more crying fits than I've had in awhile. I think it is seeing all the fresh stitches yet again (i had started looking pretty good since the exchange in March, even if a little Barbie'ish, but now there's fresh stitches in the bmx scar and a sore spot where the port was taken out). I think the crying is probably normal - it's been a long road to this point, so I feel like I'm entitled to cry all I want, pop an ativan when I need it, go to bed ridiculously early if it makes me feel better, spend an entire afternoon reading a good book while the laundry piles up, and cheer myself up with a shoe purchase here & there. I say, cry all you need to, girlfriend.
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Melster 6 months---good for u.It's a good thing but sometmes a little scary, cuz we're so used to their schedule. but it'g great no being all tied up with Drs. it's a frredom from all that stuff.
I have no idea what else I was going to say.So, I'll be back. LOL
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Shore1 and everyone....
You're welcome to visit!0 -
I keep replaying what the PET Scan technician said today over and over again in my mind. "We got a lot of good pictures."
There's no way I was going to ask him to elaborate because it would just drive me crazier.
I really wish I could have foregone the PET Scan but now whatever it is - is.
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Lee,
Trust me on this....NOT knowing if there is cancer anywhere else in your body...as opposed to having a PET...well, I think the second would be much easier to live with. I've never had a PET, or any other scan, barring Xray...so I can believe my cancer is gone, or that it is all over my body...because there is NO EVIDENCE one way or another.
Roze,
Glad things have slowed down. You are in exactly the same place I was .... even the same ages roughly....I wasn't willing to rely on Tamoxifen because as mentioned before, it doesn't work for everyone...and like you, I am 95% ER_+.....and there is no test to check if it is working.....considering I took poison and radiation with lower positive percentages of recurrence than an Ooph, I couldn't skip it.
Now I am almost a year out from the Ooph. And I will be completely honest. I'm still glad I did it. Would do it over again tomorrow if given the same choice and options for survival. But, haha, you know there is one of those huh? It murdered my sex life, muscles (estrogen/progesterone are necessary for dense muscle fibers, so even if you work out MORE, your muscles will never be as strong as they were before Ooph) and my joints. Estrogen is like oil to the joints, and when it stops, it's bad....worse than menopause (the ovaries still produce estrogen, though much less while in menopause)...so women who are 75 have more estrogen than I do...lol.
Most of the SEs so far are cosmetic. I'd rather have my life and a flabby butt....but estrogen is also cardio protective.
If you consider an Ooph, and would like to talk to me about ALL the SE, please feel free to shoot me a PM and I'll give you my phone #. I'd be happy to talk to you about it all.
BCBarbie,
You are one smart cookie! That is exactly what they checked me for ... myoglobinuria....I had to look it up when I got home! My blood work showed it wasn't that though.
Here's the weird thing. I am done with the antibiotics today. And I still feel like crap. My kidneys hurt. There is something going on ... I just don't know what yet... but I'll figure it out. See the Dr on Monday, to see if my pee grew mold...buwhahahaha. If not, then we'll have to start exploring other things.
Ashla,
JEALOUS! I want to go to Florida! We had a blizzard here a couple days ago and are due for 4-6 more inches tonight. Ugh.
Shoveling is a good workout though......lol.
We're remodeling our hall bathroom right now....down to the studs....I primed and painted bead board slats today.....allllll day. I wanted to go with the sheets of bead board, the real wood ones, but my husband wants "authentic" beadboard.......so, tomorrow we're hanging it on the ceiling.
Hope everyone is doing well, and has a HAPPY NEW YEAR!
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Bryona: My experience with Neulasta was excellent. I never had any se's from it and took nothing prior to the injection. We are all so different.
Ashla: Where you going in Florida?
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thanks tonlee! i am dealing with enough already with this surgery, i can't even imagine more SE on top of this and yet another surgery - uggghh -will pm you for sure
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Ashla,
Yeah had a lot of chemo in my eyes plus herceptin for the year and on top didn't have a good time with the chemo..very sick and then you have the neulasta what severe bone pain glad its over and hope and pray it stays that way...0 -
Bryona, adriamycin can be hard on the heart muscle (not the vessels) and may cause permanent damage, making your heart a little less able to beat as well. With a family history of heart failure (which is a disease of the muscle and not the vessels) I talked my MO out of using it.
Rozem, if it makes you feel better, my last ~ 6 periods before they returned no more (at age 51) were seriously unreal. I had a day where I had to be in a meeting from 8 until 5 so I wore depends with my pad and super absorbant tampon. It was not pleasant. And then poof, they were gone for good :-)
So I want to see if anyone else has had this experience. I went today for my 4th taxol and herceptin treatment, and about 5 minutes into the taxol drip I had a strange reaction. I started flushing and shaking and couldn't breath. The team of nurses came in and brought oxygen, benadryl and decadrone. My O2 sat was 83!! (I could see it because the little hand-held meter was sitting on the table next to me). My heart rate was 120. They got me all calmed down and re-started the drip about 30 minutes later, slower this time, and I did fine. Now I'm freaked about this one, although the nurses were absolutely (as usual) stellar and professional.
I'm telling you, chemo and me don't mix. Bring on the radiation!! Har! I'll probably be passing out and burning to a crisp. I'm a wussie!
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Oh, and Bryona, they don't do the herceptin with the adriamycin because of the combined effect on the heart muscle. So if you decide on the AC route, you won't get the herceptin until you are done.
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LeeA - I had bone scan, and CT's to make sure no mets before treatment, my treatment may have been different if I had mets to start with. It's better to know. With the bone scan they inject you with radioactive stuff then do the scan, there were some iffy looking places on my spine, they had radiologist read it while I waited in the machine, then came back and did 3-D CT scan, that was a little scary, because you know if they have to "recheck" anything then there was something worrisome there. My doc did these instead of PET scan, not sure why, it seems that some do one and some the other. I wish that my docs had done another post treatment, like Special K's did, but mine doesn't do scans after treatment unless you have symptoms.
My MO also didn't do Neulasta automatically, and my counts came back within range before my next chemo, so I didn't need it, can't say that I'm sorry. Mine did have me take antibiotics prophylactically though starting about 1 week post chemo, for a week, I have lots of family and lots of small grandkids around often, so he felt that should I contract something we'd be one step ahead.
My blood counts have been weird ever since chemo until the last one - it came back perfect, everything was normal, and that was two years PFC - kind of weird, anyone else have this?
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roze, melster, and kayb, thanks for the information about the FEC regimen. I haven't heard it mentioned here; again, probably a regional thing. If E is an anthracyline, is it any easier on the heart than A? Must... do... more... research!
TonLee, I hope the doc is able to sort you out, and quickly.
LeeA, I had PET/CT done, and I have to say that knowing now is definitely worth the few days of worrying while waiting for results. When will you hear?
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Pbrain, wow, that sounds very scary. Is this your third treatment out of six? Did they give you any explanation about what might have happened?
That's pretty low on oxygen! (eta: And I'm no doctor - nor do I play one on television)
LindaKR, thanks for sharing that information on the scans. I guess this was a PET Scan only. Just one machine. It was a GE "Discovery" (I took note of that name before climbing in/on).
TonLee, I really do remain an ostrich in spirit (i.e. head in the sand). What kind of tests did they do recently on your lower back? Were they x-rays? I need to go back and reread. Maybe there is something to this "pre" chemo brain stuff! I was so focused on your results that I was thinking you had had a scan as well...
Bryona, I'm assuming the results will be back by the time I go in Wednesday for the first chemo treatment. When you word it that way, yes, I agree 100%. I've had hip pain for several years now (starting when I was pregnant and my son is now almost 25). It has come and gone for years but now I'm worried that...well, you know the rest.
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I think the longterm antibiotics are taking a toll. Antibiotics following surgery #1 (11/7), intravenous vancomycin for 10 days and then 10-14 days of oral Clindamycin. I finally stopped the Clindamycin last night because I feel like h-ll. Of course, feeling like h-ll has me even more paranoid. (We need that little emoticon of the smiley hitting its head against the brick wall! Maybe I'll go find it and add it to this post - hehe). Anyway, I hate going into chemo already feeling like h-ll but I finally looked up some of the side effects of Clindamycin (I didn't look them up until I stopped) and I think this all might be related to it (Clindamycin). I just took my temp and it's only 96.6 so I don't think I have the flu. Oh. Did I mention that I HATE CANCER?
/ranty vent over
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Pbrain, a friend of mine had a similar reaction to one of her Taxol treatments. They slowed the infusion rate every time after, and it never happened again. I can't remember what she said about what the docs (or nurses) thought had caused the problem. Anyway, here's hoping you don't have to deal with that again!
(And I feel confident when I say that anyone who can write with a sense of humor after that experience is NOT a wussie...
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Pbrain that happened to a friend of mine on Taxotere on her 2nd infusion. They came with Benadryl, decadrone etc. too. Never had another issue. Actually, other than losing her hair she had no other SE except for a little taste change after the 6th TX. We have the same onc. She did 6 TCH adjuvent, hormone negative, HER2+, age 39. BTW my periods were getting lighter and shorter but still on time before chemo. Last period was 2 weeks before4 chemo. I was 49.
LeeA I too did the scans. My BS ordered them because there was 6 weeks before surgery so there was time. He also thought I'd be a stage IIIA (or at least micromets in my nodes) because my tumor was so large. Thing is they did see something on my liver. They were cysts but I got scans for 2 years just to be sure they were stable. BTW this is for you:
So why am I up so early. I have a cold and having trouble sleeping. I think I got it at the movies last week. It's been over a year since I had a cold. I'm usually up for at the most one a year. Hope I fell better tomorrow.
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Pbrain: that happened to me on my first Taxol infusion. Just as the nurse sat down with me after she turned on the drip to explain "possible but rare side effects" I started having them all!! But it was the shortness of breath that really got her moving. She did as you mentioned, stopped the drip, more benadryl, more decadron and then a slower infusion. For the rest of my treatments I had to take steroids the night before treatment and they always ran the iv drip slower. I never had another reaction.
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Pbrain, wow that must have scared you! I had a different allergic reaction to taxol and switched to taxotere because of it, but I remember my onc telling me about the possibility of having a reaction like yours. I am pretty sure she said it happens to about5% of people. She definitely said that if happened they would give more steroids and slow the drip and usually there would be no more problems. Rosemary, good luck with your decision on the ooph. I am sure speaking to TonLee will help you feel better about making the decision.
I am all registered to do the same vaccine trial Fluff is doing. I get my first vaccination (or placebo) on Jan. 7. I am traveling from Phila. to Baltimore to take part, about an hour and forty minute ride for me. Am I crazy? My DH is able to god with me at least the first trip, and two women at work offered to go with me the next times. I am lucky to have such support.0 -
kay g - you are not crazy to travel for the trial, I flew from Florida to Washington, D.C. for it and was happy to do it. The chance to get these vaccines to the market as the ladies in the Herceptin trials did for us is huge, and to derive a potential benefit personally is icing on the cake. The trial itself was easy, the people involved at my location were professional and very warm and welcoming, I was fortunate to be going to a location where I had lived for 10 years so was able to see DS and many friends. My only down side was the airport every three weeks for 6 months!
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lago, thanks for relaying your scan info! I hope your cold passes quickly. And perfect emoticon
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Excedrin is making the cold easy to deal with!
BTW if I could have afforded the flights I would have done that vaccine trial.
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LeeA - did you finish you're whole round of antibiotics? You don't want to go into chemo with even a hint of infection going on! Have you been taking pro-biotics or eating yogurt with the antibiotics - I found the pro-biotics make a world of difference, and so did my husband (he didn't believe it, but took them anyway, and he was amazed at the difference in the way he felt with the antibiotics, he was taking two different ones for diverticulitis).
You may be one of the lucky ones that has very few side effects from chemo.
Linda
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Just thinking about Shore and ang's recent posts about crying jags . It brought to mind rozem's post about her anger. Think it was in the context of working as a counselor in a breast cancer support group.....She said she's too angry to be much help. Forgive me rozem but it made me giggle a little just picturing going to a support group with a crazed, angry support counselor. Like a Saturday Night Live skit.
I seem to be reacting to many of life's trouble and woe with sadness and disapppointment e post dx . Can't summon the righteous anger these days. I actually think anger may be a heathier and more productive reaction .0 -
Hello everyone,
Lumpectomy went just fine. When I arrived at the hospital (7 am), my surgeon was already prepping for her first surgery and I was her third, scheduled for 12:15 pm. Her first surgery did not end until 1:00 pm. She came to see me in pre-op about 1:30 and said she would see me in hour. Surgery lasted 2-1/2 hours which included a port and sentinel node dissection. Honestly, I don't know if it is me still numb or what, but I don't have any pain, just discomfort. Nothing that Tylenol can't take of. Now, waiting for the pathology report. I am hopeful that the nodes are clear. If all goes well chemo will begin Jan 24th. So far, I'm scheduled for TCH. I'm still deciding if I want to use the cold caps because I have graying hair that I cannot dye until 6 months past treatment and I have long hair so it is really as noticeable. I also like the look of some wigs that I have been researching. I'm very grateful that I have these choices. I'm also grateful to all of you who have shared your experiences with us. It really helps when everything is moving so quickly.0 -
Rhonda2,
Great news!
I never needed even a tylenol after my port placement done at the time of the sentinel node dissection or later when I had my lumpectomy. The only ycch was those die injections around the nipple......eeek!
No cold caps for me and 10 mos pfc I 've got curly noticibly darker hair!0 -
Rhonda - glad the surgery went well and that you are not experiencing much discomfort. I had very long hair pre-chemo - longer than my avatar pic. I cut if off very short and had a hairpiece made from it at www.hatswithhair.com before chemo started - it was called an "underhair" and it was the best money I spent - I had a very nice wig as well, but the underhair was more comfortable even though it required a hat. I wore bandanas at home but did not wear them out of the house - always wore some kind of hair. My hair started to turn gray in my 20's - it is almost all gray now, so I also faced the dilemma of having to wait to color it. It is now shoulder length and the same color as my avatar pic. My hairdresser would not color it for several months, then would only put brown on it, then gradually highlighted it back to mostly blonde.
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Yay Rhonda. Glad you're not in pain. I didn't take any meds either, not even a Tylenol but I was sore… granted I got both lopped off but most of the discomfort was from the nodes.
BTW my eyes haven't been so teary since I did Taxotere. Not a memory I wanted to revisit but at least the SE won't go on for every 3 weeks x6.
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30 degrees and snowing like crazy here. Gonna put on the gear and walk up a little mountain to the mailbox . Last year at this time would never have thought of doing that much less attempting it. I read somewhere that this expression fits just about every occasion. Ladies 'this too shall pass'.
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