Chemo in Sept 08
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I called the onc office and they didn't seem too worried. They said I could go to the ER and get an x-ray if I want or call my PCP. I really don't think either is necessary, but if it gets worse, I'll either go to the ER or my PCP.
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Jane Murphy of Murphy's law: you are having a time of it woman!!! I think staying home from work is a good idea. Maybe you'll escape whatever's going around your office!
Genia, - Hope you are comfortable at Mom-in-Law's house. You need to make yourself a nice "get away Nest" there so you can just go check out when you need to go into oblivion with the Lortab!!! I have a friend who had Non-Hodgkins Lymphoma and she said not to worry about getting addicted to the pills, she was afraid of it. But her doctors told her, when you're better, you won't need them any more. She told me that was true. So when I need, I take. There is nothing more horible than being miserable when there is a pill to help sitting right there!!
Julie, WOW about you getting the insurance. That is GREAT even though it has a high deductible. There is someone in the office there going, "Doh!" But at least you're getting your money's worth!!! Sux to have to spend your inheritence on BC, but, then again, it seems like you were taken care of when you needed it...
Trude, I will never know how much of my tumor, if any was "gone" after chemo. I am not even sure we'll ever know the size I started off at!!! I'll explain in a sec. My ER+ is 90% and my PR+ is 90% and Her-. My ONCs have told me with a tumor that is feeding on hormones the way mine is, it is almost like I was predisposed to have a not so great response to chemo. But they like to try anyway b/c some women still do have a decent response. My MIRI's were done before Chemo, After AC (mid chemo) and after Taxol (end chemo). The tumors "largest" size went from 6.7 to 5.8 to 5.5. The last one said it was still nearly the same measurement but the insides were "breaking up". OK a week or so goes by and I have surgery. The pathology says the tumor is 3.5, not 5.5 So WTF??? Does this mean the MRI's were off all along? Or that maybe the tumor really shrunk more? I think we will NEVER KNOW!!! ahhhh!! (This makes me nutz!)
Priz, you hung over from the Margarita's (virtual) last night? LOL.
I see my Onc on Monday. I assume then is when I'll find out about Rads. I both want to do it to zap any cancer that may be around, and I don't want to do it b/c I kinow it is likely to mess up my newly acquired lovely boob. (one step implant with AlloDerm). Sigh. Hubby wants me to do it and if it messes up "just go back to New Orleans and do the stacked DIEP". Another surgery. Well, I guess I'll recover from another surgery , but not from cancer cells floating around.
Another case of one sucky choice or the other. But I want to live, so if they say do Rads, I will do Rads. I hope they let me do that new 3 week verson...
Boy, do I go on and on and on or WHAT???? lol.
LOVE YOU GIRLS!! Spring.
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Jane, they are sure it is not a blood clot?
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Apparently they weren't concerned. If I get short of breath or if something odd happens, I will definitely go to the ER. I have a one month wait between chemo and rads. Do you think they will do any scans/tests during this period? I haven't had anything since my original scans. I don't know if I'd be in less pain if I moved around or if I should just sit in my recliner with my foot elevated?
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Jane - I vote to keep it elevated till the swelling goes down.
My Taxol is in 1 hour...maybe. Last night, about 1/2 hour before I was supposed to take my Decadron, I threw up several times. WTH? Where did that come from? No other flu symptoms, just a headache most of the afternoon and evening. So that's probably what caused it. I didn't want to take the Decadron on an empty stomach, and I was afraid I would throw it up too. And with the headache, I didn't want to do ANYTHING! I took some sips of milk for awhile, dosed off around 11:30 pm, woke up at midnight... feeling fine. So I took the Decadron - 2 hours late, but still 10 hours before chemo. That should be long enough, right? We'll see.
I haven't had any scans either since my original. They did say they wanted to do an echo before the end of the year. Is that to see if the Adriamycin affected my heart?
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Hey Jules! - I used to get the steroid WITH chemo so 10 hours prior is fine. I asked for scans at mid chemo and at end (actually my ONC wanted mid and I wanted end) I had the breast MRIs.
The MUGA scan is, yes, to see if the Adriamycin (or "red devil") effected your heart. Mine second Muga scan actually went up (maybe because I was working out more regularly - I had "Chemo PT"). MUGA check's the heart's "pump rate" and if it goes down too far, that is not good. Anyway, I did have symptoms too (shortness of breath, etc) but most people just recover. So don't worry too much. The Herceptin can also do this to your heart... I've heard.
Jane, I also vote for a day of rest and "centering" with your leg up in the recliner. What could this hurt? I think you need a day like this and have certainly EARNED it!!! Take naps and just rest remembering how much you are loved. Feel God's delight all around you. Even though it may not seem like it with all you are going through, you are so cherished!!! Take some time to remember this and to FEEL this!!!
Confession: I am gong around with no bra! I can't stand any bra on me right now as the skin under by b's is so sensitive and tender. I have on a soft cotton undershirt under my top, and I can barely stand the cotton to touch me! I got the OK from my PS's office yesterday to "burn" the compression bra! No other bra works. I did wear a sports bra for a walk this morning. but then had to take it off. My new "self" could be in a wet t-shirt contest, it is amazing! (Not that I am looking for any contest at my age, and what example would that be to my two teenage daughters, lol, years of counceling would ensue, lol)
Spring.
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Springtime,
Count your blessing that your path results were better than the MRI indicated. My onc had said that everything up to surgery was just a "clinical" diagnosis. Until you get in and really see the tumor, you just don't know. MRI's, mammograms, and sonograms all have their issues that can make an exact size of the tumor hard to find. I really wish I were in your shoes. I was stage 2, with a 3CM tumor and HER-. Now, I'm stage 3 with a 5.5CM tumor and HER+. Much larger and much more agressive. Not the news I wanted right before Christmas. My onc ordered another PET scan, and I'll be starting the new chemo regime the day after Christmas.
Count your blessings. I really appreciate your prayers and just hope that this agressive breast cancer hasn't gone to other places.
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Juli - I don't know that I could handle $500.00 a pop; will the office work with you on that? Seems kind of harsh if you ask me. I did have a windfall by having my tx done at my onc's office instead of here at the hospital (remember when I was on a rant about $7200 neublasta & $22,000 tax(myass)otere?); for my last two txs & 2 neublasta's I was only responsible for my $40 co-pay (as compared to >$2000 for the 2 txs here at the hospital)! Happy Elaine Dance - eww, think I pulled a muscle in my thumb...lol.
I too received IV decadron just prior to tx each time (and did the taper with last tx which really made a big difference!).
Genia - if you are walking down stairs, PLEASE be careful; just because Jane fell down the stairs does not mean that you need to also
. Do you get along well with your MIL? I hope that she is sympathetic with you and waits on you hand & foot as befits a Chemo Queen! Jane - hope your leg is on the mend. I had a CT prior to my surg/chemo and asked my onc if I was to have another; was told that they would only order another if I was symptomatic.
Springtime - way to go Miss Comando! I sometimes wonder if bras aren't partially responsible for BC, especially the wired ones. I wonder if there has ever been a study comparing cultures that wear bras vs those that don't regards to developing BC?
BrandonMom - I'll be praying for you - sorry that you got this news..it sucks! What chemo regime are they prescribing for you?
Love & hugs to all,
Donna
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Yay! Thanks Springtime! This was the Winkler Thanksgiving Extravaganza
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jane- take care of that leg!!
Julie hope the tx goes well
Went to the onco yesterday- counts are good, he is thrilled that changes helped make this tx more managable. We have the 6th and FINAL chemo scheduled for jan 2. then a break then 6wks of rads...I was sooo reluctant to tell him i have a pea sized spot on my non cancer side with the double mx i told him i was praying for it to be scar tissue. It feels just like an english pea. He measured it said we would watch it for three weeks see if it changes and if it does "take it out" but he thinks scar tissue is the most likely culprit.
Have a great weekend ladies!!!!
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Spring, my docs agree, mammos mris cts.....all just tools and none totaly accurate. They have to see it. It is good this inside was breaking up, that means the chemo did something
Oh and I am sooooo jealous.....perky boobs that dont need a bra !!!! Every womans dream...Wow I want some too.....
Jane - a couple of days in the recliner sounds good. Try a virgin margarita. It may not be the same but if you close your eyes and dream, it just could give you a buzz !!!!!
My dd is flying in from Nashville.....it took two days and many missed flights but she is now on land and should be here soon. She hasn't seen her bald mom yet, that could be a big shock...
Love and KIsses to all
Trude
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BrandonMom - I am so sorry. It seems our tumor sizes have traded places. I was hoping mine would be magically GONE (I have a tripple neg friend who had a complete response) but I see that you are right, I should be happy the size actually was lower vs. highter. I had no idea the scans could be so so SO off. (I hear you too, Trude!) I can imagine how you feel. I am not wodering though if I should ask for a HER2 test of the final mastectomy turmor. (My Her2- is also just from my biopsy). Hang in there girl. I wonder if they will also want you to do Rads at the end. I was told 4cm and above, you do rads even if you have Mx. Let me know what you find out. I go Monday to ONC appt and am bracing myself for Rads next. UGH.
Trude, I am liking this Perky Non Droopy-ness of the new boobs, I can't call them foobs, I discussed with my DH last night, and we both agree to call them boobs. They feel and seem like me!! (Just higher up and firmer, LOL)
WINK!!! I see a big orange box??? (Does anybody else see Winks pic or Winkler T'giving Extravaganza??? So not wearing a bra is "going comando"!!! ???? LOL I thought that was when you ditched your wig!!! (maybe it just means going more "natural"??
I am already missing Genia. I hope she is perched somewhere at her mother in laws with chocolate and hot cocoa and cookies!!!!!!!
Ladies, I have finally started making a dent in the Christmas card. We just need to take the Family picture how and plop it into the word doc, and stuff it into envelopes.... It is such a BEAR. I wanted a PASS on cards this year, but DH encouraged me. Maybe it is good to have a project to do.... (I am trying to convince myself!!!) But they may not arrive until after Christmas!!!
Spring...
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Trude,
When you said that your surgeon said the goal was to get in 4 treatments, that was out of 12 on a weekly basis, right? I was scheduled to get 4 treatments dose dense (which I believe is the equivalent of 12 weekly treatments). So, if I understand correctly, the fact that I got three out of the four in more than covers what they are looking for. Do you agree?
Does anyone else know about this?
Thank you for your help.
Jordie
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Spring - I see Wink's pic... 18 people, I think!
Wink - Great pic! Looks like a fun time was had by all!
Genia & Jane - Hope you are resting well!
Wink - I have to pay $500/tx for the 1st 5 tx...then I will have met the $2500 ded, after that I pay 30% till I hit my out of pocket max of $7,000.
Taxol #2 went fine... Taxol #3 is on Wednesday. Hoping I'll be feeling fine for my family xmas party at my sister's tomorrow.
Spring - My understanding of "going commando" refers to not wearing something that is normally worn, i.e. wig, bra, underpants, etc. So glad you like your new "self"!
Bettysgirl - only 1 more chemo...yay! for you!
Trude - So happy you will see your dd soon! I get to see my brother tomorrow. I only see him once a year.
Hugs to all!
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Spring, I see a big orange box also.
Chris
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Springtime,
Rads were always in the plan, as I had positive nodes. It is just learning that my tumor is way larger and more agressive.
I would think the hospital did the pathology to include HER as a matter of course following the mast. No news is probably good news. If it had changed, they would have let you know.
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I forgot to mention that the numbness, burning, and tingling that started in my feet a few days ago is all in my head. When I mentioned it to my onc nurse, she said," It's too early for that." Later, when my onc came by, I mentioned those symptoms again to him, he replied, "It's too early for that", okay...
Did they offer any other explanation? NO! 0 -
Julie,
If that's whatyou fell, then it's there! I remember when I was pregnant with 2nd son. i told the doc that i felt the baby move. They told me 'no way, it's way too early' BUT I could feel him move! So believe in yourself!
D
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same thing with me when i told them the heel spur pain started with the first taxotere. He told me that the chemo wouldn't do that...When i went back a week later he aked me how bad the heel was hurting. I told him it stopped with the rest of the bone pain days later...he had to swaallow a little crow!
Have a great Sunday and keep WARM!!
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Well, we have all three grown kids here, a hubby and a friend,with them came 4 kids (11-12 years).....wow, its alot of people and a lot of food. At least my girls are good at helping and my hubby cooks. What a fun time. Hope all of you are having a great holiday with your family close.
Love to all
Trude
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Home sweet home......good to be back. I sound like I've been gone for weeks....lol.....but honestly there IS no place like home. Was nice to see my MIL. And she does take good care of me.....she's a sweetie!
Donna I only see an orange box too.......hmmm........strange Juli sees it and I can't. Maybe Juli has chemo xray eyes.........lol.........or it could be my firefox browser not letting it show up too!!!
Feeling better.....but still not GOOD. I think those days are over.......feeling good days. Still taking my antibiotic. And guess what started draining last night........my stupid PORT!!! God I hate that thing........it's crystal clear fluid but still why in the HECK is it draining NOW???? There is an itsy bitsy hole still in the skin surface.....and that's where it drains from.
As much trouble as I have had getting this port healed......I can only imagine what my breast surgery is gonna be!!! grrrrrrrrr
Hope everyone is doin good today........hugs and love!
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Welcome home, Genia! - Glad you're feeling a little better. If only my xray chemo eyes could tell you what the heck is up with your port! LOL
I actually slept the whole night in my bed last night... usually I go downstairs and sleep on the couch because I haven't been sleeping well. No SE's from Friday's Taxol while at my sister's xmas party yesterday...Not even 1 Hot Flash! Amazing! ...except for 1 minor issue...I had to draw on my eyebrows. (only a few left)
Hope everyone had a good weekend.
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Welcome back, Genia. Have you called anybody about your leaky port? That doesn't sound good.
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I'll tell ya what I think is up with my port.......I don't think my body has ever accepted it being there. And it keeps trying to reject it. I think that is where all my fevers have been comin from too. I think it is too much of a coincidence that when I started on the antibiotics.....it starts draining really bad. This thing has caused me NOTHING but grief. I keep it for one day of treatment every 3 weeks and it causes me 20 days of problems....lol
I will be so happy when it is gone. The surgeons says my veins are too bad for the chemo.....so I'm stuck with this thing until the Herceptin is over in a year. I think when I have my breast surgery I will have him move it. And maybe use a different kind or something......heck I don't know.
Wish he would give it to me when it comes out......I would run over it with my car!!!!
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Yes Jane....I have called about it......many times. The onco says that it shouldn't be doing that. The surgeon says it's not infected.....and that my skin just didn't heal in that one spot. Sorry but I think the onco is right........otherwise it wouldn't drain all the time.
Thanks for the welcome back too Juli and Jane.......hugssssss
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Genia- You may be in antibiotics for a LONG time with rgat port of yours. When is your breast surgery? I would want it replaced then, if I were you. Glad you are feeling better!
What was in the orange box?????
D
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Hi all!!!
I now see a picture vs. Big orange box!! Go figure! Lovely family, Wink!
Genia, I had my port out when I had my surgery. I am SO GLAD it is gone, and mine was never infected, it just drove me bats, my body did not like it either, I could not move without that thing feeling like electricity. I wore 2 bras to keep it still. You will be glad when it is gone. It can't be good though for this thing to be infected and you going through chemo. Good GRIEF!!
I see my ONC tomorrow for the 1st visit after chemo is ended (6 wks ago) and surgery is over (3 wks ago). I will discuss the pathology report that is so different from the MRI scans and I suppose confirm I will also need rads. And figure out when that will be.
Christmas cards went OUT!! They may be late but at least they are DONE!
I hope you all are doing okay. FYI, if anybody is taking L-Glutamin, the one that GNC sells is the best, finest powder that disolves in juice. (IMHO!!!)
Spring.
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Donna's family is in the orange box.......but I see nothing but orange! lol
I agree priz.....they may as well give me an open RX for antibiotics with this stupid thing.......lol........grrrrr
Spring.....if I didn't have to have the Herceptin for a year......it would come out with my surgery. But I do......so he wants one in there for that.
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Hi All,
Don't know what happened with the picture - it was there when I first posted it - today, just an orange box....what's up with that? I deleted the picture.
If I try to do too much work on the port side - my port starts aching...and with company coming in, I've been decorating the house along with the normal cleaning. My whole right upper side gets sore, and my right arm gets numb. I've been having to take a percocet at night to get to sleep. I'm ready t o have this thing removed, but it's been recommended that I keep it in for at least 6 more months
.Juli - my eyebrows have continued to thin out; they are very sparse and there are big gaps in them. Glad that you could sleep in your own bed - hope you are still able to do so.
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I was talking with a woman at the cancer center yesterday who had her port removed the day prior because she was done with chemo...and now I'm kindasorta freakin' out because she said that ports are normally removed under local anesthetic.
Um.
NO. Not for ME, tyvm. Knock me OUT.
If I had to be put out to put it IN, they can at LEAST put me under twilight sleep..
~shudders~
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