TRIPLE POSITIVE GROUP
Comments
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lago They took my port out 2 weeks after my last herceptin. My onc only leaves them in if they think that you may need more treatments. His theory is that if you do get a recurrance, it's not that big of deal to have the port put in again. I didn't ever have any trouble with my port, though I was annoyed that nobody knew how to draw blood from it, I didn't have my blood drawn at the infusion center, and when I had my bilateral carpal tunnel surgery and the stents in my eyes they put in IV's because no on there wanted to touch it :-(. Oh well, now I know an IV in the foot isn't that bad, it was actually easier than in the arm.
TonLee & nmos - I'm also hypothyroid, but after chemo I started dropping weight really fast, I had my thyroid checked and I was hyperthroid, so my PCP lowered the levothyroxin dose by about 20% and it's fine.
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LindaKR--the chemo affected your thyroid like that? Interesting. I'm hypo right now and on levthyroxin. I have an appt with the endocrinologist in a few weeks. I've been wondering about the impact of the chemo and whatever else I end up taking (Tamoxifen, AIs).
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Well they prescribe Synthroid .. a synthetic thyroid replacement hormone T4...but I also take a natural dessicated thyroid because the synthetic contains only 1 hormone produced by the thyroid, not ALL of them....and I know ALL of them are beneficial to my body, even if science can't prove exactly how just yet.
Thyroid is a PITA, but it's not a huge deal...easily managed.
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After I finished my herceptin, I climbed out of the chair, marched up the stairs to the surgeons office and scheduled the appointment to have the port removed. My onc said "You don't really want to keep that in there do you?" No, I didn't. And I WAS a stage 3. I am looking forward with thought that my body is free of cancer, and staying that way.
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My surgeon removes it after herceptin is done. Says it is a foreign body and better to take it out. Said the same thing about putting it in again if needed....not that big of a deal.
When I have had to have bloodwork done outside the chemo office, my doc just sends the order over to my oncologist and I go there where they access the port and draw it. It is no big deal and the lab in my docs office doesn't do port access. It is nice that he has no problem doing that.
I had a kidney stone flare up a couple of months ago, and the onc's office accessed the port and then sent me over to the hospital where I spent the night receiving fluids. Didn't need the IV. That was a wonderful thing. (not the kidney stone! Just the post acccess!)
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Thanks SpecialK: I'm now Day 7 after Chemo #4 and today palps are slowing down some. Hope they go away completely once all this stuff is out of my system before the decide I need heart Ablation Surgery.
Ports: I want mine out too...it has never been comfortable and I might even have it out before I finish Herceptin but we shall see. Since I'll need to have MUGA Scans, it sure it nice having it there for those procedures.
Arlene
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Thanks for the thyroid info! I had my TSH levels checked today, I will get the results tomorrow. An interesting factoid, my onc thinks I had such a terrible time on Nuelasta because I am
only 5'1. He said the dose for Nuelasta is the same for everyone regardless of height or weight. Anyone else our there in the petite end of the pool experience severe bone pain? Strangely enough I am on day 22 Post TX 4 and have spent the last few hours having Sporadic Nuelasta pain all over. My onc also said he would wait a month before starting Tamoxifen. Meanwhile going to
The OB next week to see if chemopause is permanant. r..0 -
pasmithx2 - I'm guessing it was the chemo, I had been on the same dose of levo for about 6 years, so either it was the chemo or a coincidence.
On another subject, I never was given a Neulasta shot, my labs were done just before my chemo and the counts always made it in to the normal range, just barely, but... Glad I didn't have to have it, it sounds kind of miserable.
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nmoss1000--Interesting factoid! I'm on the tall-ish side--5'8" (was taller but shrunk with age!) and I have had little to no bone pain with the neulasta. If they know this, you'd think they could warn the petite ladies what's in store.
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nmoss - I only have an inch on you and really did not have bone pain from Neulasta or Taxotere. I am more inclined to think it is luck of the draw.
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I had my port out 6 days after my last herceptin - boy was I glad to get rid of the bloody thing. I told my onc about the removal after I had it taken out - no argument from him.
Sue
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I had bone pain from Neulasta but would do it again if given the choice if I had to do chemo again. I even ate Sushi on chemo.
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I am 5'2 and didn't have much bone pain on Neulasta, but I did take the Claritan. I did have it fairly bad on the one taxol treatment I had though. Now I've had one taxotere treatment, but the pain was much less than from the taxol.
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Morning all:
NMoss: Boy, your SEs just keep coming don't they? All this stuff should be working its way out of your system and you should be much better in the very near future. Guess being 5'6" kept me from SEs from the Neulasta.
Hey, when did most of you start back eating normal again after your final chemo? I mean salads and fresh vegetables, etc. I am so missing salads. My plan is to wait at least a month. I had my final post chemo bloodwork yesterday and guess all is well or they would have called me. They even added additional viitamin/mineral workups.
Thanks, Arlene
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Hey I thought it sounded far fetched! Hey Arlene, I never stopped eating salads. I just used veggie wash and salad spinner. But only on days I felt good.
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Arlene I never stopped eating salad (when the taste alteration wasn't a problem). The nurses and MO told me just to avoid salad bars in public but said it was fine to fix my own salad and clean everything carefully.0
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ArleneA--I never stopped eating salads either. I use the food grade veggie wash on everything. I haven't had to deal with a salad bar since I started chemo, but I would avoid those if I had. I find that when my taste goes off, the bitter flavours remain so salad veggies just don't appeal to me. Also Big D makes all that fiibre kinda' scary. My taste comes back about a week after each TX and I get back into my salads asap.
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Wow! I've been depriving myself of salads all this time. Oh, well the Educational Nurses and our insurance nurse told me to stay away from fresh vegetables so I did. For the most part, nothing tastes good anyhow and can't wait for things to taste good again. I've been living on creamsicles and my body had the Big D after #4 which is miserable, so for nearly 3 days, I ate nothing. Today, I'm working on getting back to normal.
Thanks ladies! I'm ready for an Island's (restaurant in Vegas) Greek Salad....my favorite.
Arlene
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just curious... other than taste is there another reason not to eat salads & veggies? I've been juicing organic green veggies0
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Panama: The reason is that fresh vegetables are loaded with bacteria and you risk getting really sick.
Arlene
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Ugh. Had Herceptin today...the tech said my cancer center has BC patients keep their ports for FIVE YEARS!! And they must be flushed every 4-6 weeks.
Um.
No.
Then she told me they wouldn't "let" me take it out for at least a year because the risk of my BC coming back is so high.
Huh?
Well....we'll see....
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Ton Lee, that sounds awful. I would double check with BS. I already have my removal appt for March 23, 2012
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Nmoss.
It's just another "This is the way we do things here and no one has ever questioned it before you" type things.
They think I'm high maintenance.
Some outright dislike me.
I don't care.
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NMoss I am 5'1" and had terrible bone pain the first treatment and then I took the Claritan religiously the 2nd time and had little to no bone pain. Go figure!!
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ArleneA did you always have the big "D" with chemo or was this time different? I have had the "C" the past two times(although not bad this last time) and was wondering if it changes.
I so miss the taste of food this time! Salsa, quacamole and chips blah!!! Pizza with onions and peppers, blah!!!! I am with you on the popsickles!!! The one good thing about all of this is that I have lost 15 lbs of the 20 that I had wanted to lose before the summer, so at least I have a jumpstart on that!!
Hope you feel better soon!
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Hey Bucky: Been thinking about you because I haven't seen you on here of late. I got the BIG C only 1-day the first round and nothing for 2 & 3 and just one day of the Big D this time but it is gone now and I'm eating chicken noodle soup and my popsicles. It does get better, I know that. I've lost 10 pounds and am ok with it too. No more though, I hope!
Nice to see you again.
Arlene
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TonLee - it looks like I had about the same diagnosis as you did, and my MO sent the order to the surgeon at my last Herceptin to have the port taken out. I can't imagine having it for 5 years and having to go have it flushed once a month. YUCK! I was high maintenance too, my doctor always started the appt with well what's on your list this time :-). I'm so thankful that he listened and answered all of my questions.
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Hey all- quick question I had a normal period 4 weeks ago, after not having it for 6 months, and now im waiting for the next one, and it hasnt come. Can it skip for another 2-3 months ago? just want to share experience in others and what they are going through, my last chemo was December.
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Nmoss,
What are your thyroid numbers? (Don't let them tell you they're "normal." Get the numbers!!)
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We lost a triple positive BCO sister, Konakat (Elizabeth).....I hate BC.
HATE. IT.
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