TRIPLE POSITIVE GROUP
Comments
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LindaKR - unbelievable! I would have been speechless too.0
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Thank you Omaz for the welcome!! I just heard from a friend of mine to have all old fillings be replaced with new because of the chemo destroying teeth. Is this true?? Does chemo ruin teeth? I've never had good luck with my teeth to begin with. So if this is true, I'm in trouble. lol
Thanks in advance for anyone's input. :-)
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Thanks Sue. Do you have a link or anything for that chemo group? I don't know when my first appointment will be, however I do know that next Monday I will be having a port put into my chest.
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Hi, Jeanne - there's probably a way to send a link, but I don't know how. This will work too: click on the ''Search" button in the upper right of this page, put in 'October 2011 chemo group' in as key words and it should show up 5th in the results.
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Thank you!!!! :-)
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Jeanne I too was petrified when I googled HER2+. All I kept reading was "worse prognosis". Not so true anymore now that we have Herceptin. Much of the links you have been reading is based on old information. Herceptin is a big, big game changer for us HER+ gals.
We all did those scans. Scared to death of the MRI. Much easier than I though but if you are that nervous they will give you something to calm you down. You just need to let them know ahead of time. The scare is really because all of this is unknown. Seriously the beginning is the worst part. I have to admit nothing was as difficult as I thought it would be. Surgery, chemo, Hormone therapy, even my LE (lymphedema) isn't so bad.
I ended up rocking the scarf look with big earrings. Right now everyone loves my short hair. onword on the Illinois Ladies t hread I think will kill me if I grow it back to my shoulders. BTW my avatar is 2 weeks after my 4th Chemo/herceptin wearing a wig. I don't look sick at all.
Port was pretty easy for me. Yes you will have some discomfort and it will take time getting used to it but I hardly notice now. Sense of humor is a must. I call my implants my boobie prizes.
Feel free to PM if you need to chat. I'm almost done. Finished my last herceptin 4-5 weeks ago. Getting my nipples on Thursday. Just taking the estrogen sucking drug now (Anastro zole). So are you doing a lumpectomy, MX, BMX? Do you even know yet? I did a double. The good breast had a little pre-shit in it too so off with it's head as well.(off with it's head is a link).
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Linda how come you got the easy to cure breast cancer and I didn't. We are the same biology and practically the same stage.
People can be idiots. If one more person asks "so are you clear now". Of course I assume yes but I really want to start carrying around a magic 8 ball and say "lets see" (BTW the 8 balls said "as I see it yes." and it gets pissed off if you keep asking.)0 -
jeanne11257--No one has mentioned teeth to me in the last almost year of this. I had a dentist appt before I started chemo and no one said that I needed my fillings replaced. I was only told not to do any dental work, including cleaning, during chemo because of the risk of infection. And I was told to stop flossing for the same reason. Flossing can create tiny cuts that increase your chance of infection when your immune system is compromsied. I got a supersoft toothbrush to use on the few days each cycle when my mouth was sensitive, but otherwise carried on with my normal routine. My teeth are as good as they were before chemo.
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Speaking of teeth I had my teeth cleaned before chemo. My dentist did say you can have issues during chemo so be sure to take care of your teeth. He recommended a soft bristle brush and toothpaste with fluoride. I actually flossed every night with no problem. Haven't had a tooth filled since before chemo.0
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Jeanne - Before chemo they will tell you about the medicine that you will get and will explain possible side effects. Keep in mind that not everyone has bad side effects! So while it's good to read up don't think that everything that is described will happen to you. You may go through chemo without a lot of problems.0
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Welcome Jeanne1257: You'll be just fine. My teeth hurt horribly and I thought I might lose them but my onc said it wasn't going to happen and my teeth are just fine.
Before all my tests, I took half of a .25mg Xanax and that kept me calm. They wouldn't give me anything at the Radiologist so I got it from my doctor.
I never had a brain MRI though! Insurance wouldn't cover a PET so I had CT scans of the whole body except the brain. Hope that isn't a mistake.
This is a great support group and Lago and Omaz know so much.
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Jeanne112571 I also had my teeth cleaned before chemo, and I actually had an abscess that required oral surgery, we had to put my chemo off a couple of weeks to make sure that all of the infection was gone. I too had read that people can loose teeth, and I've had alot of dental issues over the years. I had NO PROBLEM with my teeth. My onc's office just told me to keep my teeth clean, rinse my mouth out with salt water a few times a day, and suck on lozenges, or use they mouth wash for dry mouth, can't remember the name of it now. I was told that most of the tooth issues are caused by dry mouth, I guess it's a great environment for bacteria to grow. No that being said, I did meet 1 lady (only 1 out of all that I met) that lost 2 teeth during chemo, but I do believe she is the exception. Oh, and I went to the dentist about 4 months PFC, sure that I had cavities and he said my teeth were in great shape, no cavities, very little build up.
lago - I know exactly what you mean - I end up telling people that I had clean margins, and am theortically cancer free, that all of the those "easy" (
) treatments were to make sure that any cancer that was floating around were killed, then I go on to tell them that I'm still on disabilitiy because of the residual SE's from the treatments. My two cents on Pinktober - they should show cancers reality in all it's bald, scarred, painful glory, not just the smiling walkers with their pretty pink shirts, they might even be able to get more money for research to stop BC before it happens.
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Wow! Thanks everyone!!! I'm gonna just roll with the punches and treat this illness like any other....one day at a time. Today's brain scan MRI was a breeze, probably thanks to my generic form of Xanax .5mg. I think I almost slept in it! lol Will save the other Xanax pill for my next MRI.
Keeping my chin up, continuing to live in denial, and trying to be healthier. It's the way to go for me. :-) Love you all and I hope all continue to beat this and live a happy life. xoxo
Jeanne
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Hi Everyone,
I am new to the group. I am triple positive. I had my first round of TCH chemo the end of August.
I ended up in the hospital five days later for two weeks with neutropenic colitis and I had to have my appendix removed as a result of it. Needless to say I am leary of my next chemo. My doctor wants to switch me to AC and then to Taxol and Herception after the AC completes.
Has anyone else had such a reaction with TCH or other chemicals? Did they switch you to new chemicals/treatment plan, if so what?
Thanks!
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Angiemm I did read about someone who had a pretty intense reaction to TCH and they switched to AC/T + H. I'm sure it's not common but does happen. There are plenty of triple postives that get AC/T+H as well as TCH.
Sounds like your doctor wants to be sure this doesn't happen again. Good for him/her. Sounds like you are in good hands. Sorry this happened but it sounds like you have a good plan B.
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Welcome Angiemm - Sorry you had such a rough time with your first chemo! As lago said TCH and AC->TH are two of the most common regimens for triple positive. I saw two med oncs before I started treatment and one recommended TCH and the other AC->TH. I chose the TCH since I liked that doctor and practice better. Did you have a neulasta shot after chemo?0
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Thanks Omar and Lago for your replies. No, Idid not get a Neulasta shot. For the next Chemo, I am going to get daily shots of Neupogen (sp?). He feels the Neulasta is to strong.
Good to hear, that there are plenty of triple postives that get AC/T+H as well as TCH.
Is anyone aware of any cancer trials whereby just Tamoxifen and Herceptin are given?
Thanks!
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I ended up in the ER after my second round of TCH - then was started on AC x3. Still doing Herceptin now that chemo is over. AC was not bad for me compared to TCH. I'll be happy to answer any questions.
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Angiemm I think the trials they have done in the past show that Herceptin works much better with chemo. This is why it is given to us this way.
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Lago - Thank you so much. I have found the same so far. I am going to contact the ACS to see if they are aware of such a trial. If I find anything, I will let the forum know.
Achpurple - So glad to hear I am not alone. In researching, the neutropenic colitis happens in less than 10%. Did you have the same reaction and did you have the neulasta shot after the TCH ? After AC did they combine Taxol and Herceptin? Thanks!
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TCH first day went well! I had a red face and was shaky when I woke up today, but feel pretty good. No nausea with the script they gave me! I'll carry it around just in case...Hoping I don't get the colitis that Angiemm spoke of. Good luck with ACT + H!!!
Jeanne-ask for a bottle, not just two pills, of Xanax, so you can take it when you need it! Sometimes it is hard to sleep at first. So far lumpectomy seems to have been the right choice for me. I'm glad you are thinking one day at a time!
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NancyJill - My onc PA called it 'steroid red face'. It lasted about 24 hours for me each time.0
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Did the 90 minute perception yesterday. It seems to be helpful. No queasiness today and lots of energy. Some acjiness yet but I can deal with that. Argued with the onc some more about cat scan/pet scan followup with no success. Told him I was considering hysterectomy and wanted an ovarian report, and also for peace of mind. He said that wont give me peace of mind and that I will want another one in six months. Lol....he does know me pretty well. Then he told me he had a patient who needed to buy a house, but she was a nut case. Said he was going to give her my name and that we should get along fine. REEALLLY. I burst out laughing and told him it takes one to know one.
I am playing on my brand new ipad2 while on our way to Hilton head. This is the greatest thing!0 -
fluff - Have a great time!!0
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Angie: After I had my first TCH during my 3 weeks in between, I had nosebleeds, kidney/bladder infection, couldn't stand the taste of anything, changes in my hearing. It was during the second infusion that I had an "anaphylactic reaction." I was about 15 minutes into the Taxotere when it happened, I instantly felt like I was going to blackout, my mom and sister were there and said my neck and face turned bright red and my heart was racing like crazy. They stopped it immediately and gave me lots of other meds to counter it, then started the Carboplatin which soon started the same reaction, followed by Herceptin which they said "no one reacts to" but I did in about 2 minutes. Since they couldn't get my heart under control they called a squad and made me go to the ER. After that, I saw my cardiologist (existing heart issues) and they made me wear a holter monitor for 2 weeks. When they told me they were switching me to AC I was petrified because I knew of it's heart implications, especially because I already knew I had to take Herceptin, which also has heart implications. Talking about anxiety, that first dose of AC was scary, but I did fine for the most part. My heart did start going kind of fast, and I still had my heart monitor on so they caught it all. They started infusing very slowly and it did way better then. They also still infuse Herceptin slowly for me and it has worked wonderfully through several treatments (can't keep count, but somewhere near half done). I did get Neulasta the day after every infusion of both TCH and AC, but my counts got so low one time that I had to delay treatment for one week. Did not have Taxol, I don't know whether it was because it is relative to Taxotere which is what I had a reaction too, or just that I didn't need it because my lump was so small and they got clear margins or maybe even that it is ILC instead of IDC, who knows.
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achpurple: The heart stuff is very frightening. I'm still having the palps but just not as constant. Hoping I can make it through Herceptin. Monday will be #8. Almost due for another MUGA.
Wow, sounds like you have a HORRIBLE time and hoping things settle down.
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Achpurple - Sorry you had that horrible reaction. I am relieved to hear AC went smoother. Did you receive the AC every 14 days? My Onc is trying to decide if it is going to be every 14 or every 21 days! He definitely said Taxol with Herceptin for me following AC. Scary for Taxol and Taxotere are in the same family which can cause the debilitating abdominal cramps and incontinence I experienced. I had 1 positive node so that could be the reason for Taxol. As they say, one step at a time. How low did your WBC go even with the Neulasta?
Nancyjill - I actually had abdominal cramps the day of and the days following, but it did not become debilitating until the 4th day. So, if you are not experiencing cramps now you should be all set. Don't worry, what I had only happens in about 6%. If you experience incontinence for more that 24 hours call your doctor. I did, but it was the long weekend and the Dr. on call said my fever was not high enough to be life threatening so just keep hydrated, take immodium/advil as needed and check back after the holiday. Big mistake, by that Tuesday I was so weak and my WBC dropped to 0.5. I learned my lesson, be your own advocate.
Question all, what type of reactions have you had with Decadron? WIth TCH, I had to take it the day before, the day of and the day after. It was like a mega dose of caffeine for me. I learned I don't have to take it before and after with AC, but most likely during my chemo treatment. I was hoping to avoid it, for it also caused me cramps.
Thanks everyone!
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I received AC every 2 weeks and I can't remember how low my WBC went, don't think very low just low enough to delay treatment. I only took Decadron for TCH and it caused flushing, I just now remembered after TCH I had some issues with my blood pressure being too low and had to stay in the office for a while one time while they tried to figure that out and what they were going to do about it. They eventually sent me on my way and I had to take my bp 3 times a day, 3 positions each time and call it in. Eventually the issues went away on their own. Just tell them what issues you had with Decadron and they can probably try something else in your premeds.
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I also had some nose bleeding. It stopped after chemotherapy. Very runny nose on herceptin. I had my third echo (first was a baseline) . LVEF was 55%, down from 65% in March. He is not worried but I am. I will receive herceptin until next March.
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fluff - Mine went down too from the beginning of 73% to the lowest point at 55% just before I finished. Everyone here also thought 55% was ok.0
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You know, I've been wondering about my runny nose and thought it was just a result of the chemo but sounds like it is probably from the Herceptin. I hate it! Also, I'm also worried about my EF #'s. It is going down and I am only at #7 so a long way to go.
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