TRIPLE POSITIVE GROUP
Comments
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pejkug- I agree with Omaz, it does seem like your rad onc may not be a good fit for you. Another opinion may help you come to a better decision for yourself. Not having the numbers is acrap answer!
I was not happy about starting rads. I also had them to my left side and had fears about my heart. I saw the fields and was assured from my rad onco that my chances for damage were minute. In the end, rads turned out to be uneventful. I realized that most of my fear was from the stress of entering another phase of treatment. Once we are diagnosed, it becomes a rollercoaster. We quickly move from one phase of tx to the next, with minimal time to process new info. It is why I asked for a mini break before starting hormonals, I want time to heal and move on to the next step.
No word on the PET yet. Trying to not google!
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Tonlee...I skipped the boosts. Now you have me freaked out. What were the studies you found about recurrence in those skipping the boosts? I got my protocol from Sloan Kettering. The boosts were only to the m scar line and the incidence of recurrence in the scar line is minimal...that's what I was told by both my rad oncs. CRAP!!!!
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Gee,
Don't freak out...you probably don't remember, I didn't have "Clean" margins on the skin side.....I'm getting ready to take my son for a dental, but I can give you links to some studies about it when I get back if you want them...or you can Google Scholar journal articles on it...there is an abundance.
Also, most of these studies are done on women with lumpectomies....and while having a MX removes the breast tissue, there is still a chance for cancer cells to be in the chest wall...if that makes sense.
Pek, Chemo really is for any stray cancer cells in your body. It doesn't necessarily get everything in the breast....in fact, a lot of women who have chemo first then surgery...there is still cancer in the breast....so it's an easy extrapolation to understand it works in reverse as well...
Also once the breast is cut on, blood circulation and lymph (if taken) system is compromised and systemic delivery is not always guaranteed.
Radiation is coupled with lumpectomy, as I understand it, because of these factors..and the huge benefit (no local recurrence) for women who have lump/rads as opposed to those who do not.
Women who have MX are at somewhat of a disadvantage imo because most of the long term studies I find are done on women with lump/rads...and we have to extrapolate the data to our situation...
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Okay, so I finally can go to the dentist after chemo and wait time after chemo and my mouth is a mess. I've broken 3 teeth since chemo began and my gums are a mess. He told me that because chemo causes you to have a dry mouth, it creates lots of problems. He also was telling me that I should avoid sugar at all costs after chemo because of this, but, he said, they probably already told you that at the chemo center. I said "no" totally opposite, they tell you to drink milkshakes, eat anything you want to keep your weight up, etc. He said "Oh my God, that's totally ridiculous!" Not looking forward to my many visits to fix it all.
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Achpurple I'm dreading my eventual visit to the dentist even though I've tried to take good care of my gums/teeth during chemo. I have to say that although I really like my chemo center, one thing they are totally missing is info on nutrition. The MO/nurses have never once discussed nutrition with me and I've gotten the same type of "whatever you can tolerate...whatever you are able to eat is fine...don't be surprised if you gain rather than lose weight during chemo..." I'm so grateful for all the info I've gotten on these forums or I would have been clueless about what to do. My BS was the only one who ever gave me a binder with lots of info. It seems to be hit or miss as to what we all receive...
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He told me he could tell I had been taking care of my mouth, but chemo really hits it hard.
By the way, your skydiving video had my heart pumping and my spirit soaring right there with you!
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My dentist is awesome. I saw him just before chemo. He gave me a good cleaning. He told me all about biotine and gave me fluoride toothpaste to use. I also flossed (and still do) every night. So far no cavities. He stressed taking good care of your teeth. If you eat sugar then brush your teeth afterwards. Also drinking lots of water helps rinse things out too.0
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Yikes! Dentist - something I need to do since I cancelled my appt that was scheduled during chemo. My teeth seemed to have faired pretty well but they did sure hurt after each TX. I too flossed all during chemo and never had any bleeding, fortunately.
Thanks for the reminder!
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Hey ladies. I have been reading but not posting much.
I had #2 herceptin today and I am so naseous. Have any of you had this from the herceptin? They did it over an hour today instead of 1 1/2hrs so I don't know if that is the cause or what. It is bad and brings back memories of chemo
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karebear - sorry you are feeling nauseous - ask them to slow it down again next time. Are you drinking enough?0
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Take the compazine as that should help. The nausea is NOT fun.
I have my first only Herceptin on Monday so we'll see what happens.
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I will drink more and try a compazine. I still have some left from chemo! Thanks ladies and I will ask my nurse to slow it down next time.
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Kare,
I take my 3 week Herceptin in just under 25 minutes now.
I get a little nausea the afternoon after Herceptin. It starts as a really "Full" feeling...like I drank way too much water...and then turns to general ickishness...but if I grab a 30 minute nap it gets better.
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LAGO...thinking of you tomorrow and sending best wishes for a breeze of an exchange!
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Smooth sailing Lago! Hope you're feeling well very soon!
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Had my first Herceptin only today - so strange to be hooked up to a bag and still be happy! I asked them to run it over an hour because I remembered reading here (omaz, was that you?) that slower was better. I went in at 11:15 and I feel fine now, have all day. Just tired - have been working on a cookbook project for my MIL's 80th b-day this weekend.
I posted on tch too - lago, how all goes well tomorrow!
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specialK - my onc nurses said a drug rep or someone told them that the 3 week Herceptin needs to run for at least 1 hour and preferably 1.5 hours. That's how I always had mine done.
It's true, I remember that weird feeling of being in the chemo room and being hooked up but feeling totally fine. I felt almost like I didn't belong, or like I was a poser or something. Surreal.
Glad you're feeling well.
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For tx#1 I sat next to the crazy, oversharing lady with the inappropriatey low-cut top who told me she wanted a BMX so she could get new boobs, since all her friends had augmentations, and that her DH liked that her lady parts had no hair. For tx #2 through #5 I sat in the same seat on the other side of the room because there was another BC patient that started when I did, so we hung out together with our DHs, and to get away from the crazy lady. Today I went back to my original seat to get away from my old chemo seat! I was so happy today they probably think I am the new crazy lady!
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Lago best of luck to you ! You are in the home stretch!
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Special K it's a great feeling! Wait until the following week when you don't have to go. It was the first time I was able to breath since the whole thing happened.
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Hi gals,
I one week out from my #1 TCH, and had my weekly herceptin this morning. I have been following all your suggestions for SE's and have greatly appreciated all of them. I am having the worst heartburn ever!! I have a prescription for protonix which I have taken, but hasn't seemed to help. The last hour has been unbearable. Any suggestions? Thanks so much!
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Christean - I had heartburn after tx 1. I got acupuncture and that helped. Also, the onc nurse said that some people can't tell the difference between heartburn and nausea and that taking the anti-nausea meds can help even though it feels like heartburn. I took my anti-nausea meds regularly after that and got acupuncture and was ok. I guess I was one of the ones who couldn't tell the difference!0
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Christean: I had the heartburn after TX#1 too and it was one of the most miserable SEs ever. Onc said to take something like Prilosec next treatment and I never had it again. Well, I did but very mild NOTHING like the first treatment.
Hopefully you won't have it come back.
Arlene
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nmoss - I have always been Herceptin every three weeks, but now I only have to go on Herceptin day, not for CBC or Neulasta. It will be nice!
Christean - Do you have any Pepcid, Zantac or Tagamet? The different mechanism might help?
I was very surprised today when meeting with my onc that he asked me if I would like to have a PET scan now that I am done with chemo! I love him! My baseline PET prior to beginning chemo was to look around for mets but everything lit up around my chest because I had already had 3 surgeries. Now that it has been so long none of that stuff should be a problem. He just wanted me to have it for peace of mind if I wanted it. Of course, I said yes, sign me up. I also asked about testing for Vit D and he ran out of the room to the lab and snagged my 2nd vial of blood from the CBC and told them to test it. Is he great, or what?
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Special K: You are sure up late. GREAT onc you have. I've been on Vitamin D for quite sometime.
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SpecialK: You are also very lucky that you had an initial PET Scan - my insurance wouldn't approve it. Having one post chemo is astounding.
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ArleneA - I am a little night owl! My DD is out with friends, I usually don't relax until she comes home. I was so shocked when my onc casually threw out the scan idea, he actually asked me what I thought about having one. I think my ins approved the first one because I had 2 positive nodes, so they needed it to correctly stage me. He looked again at the report today from that one, and it reinforced his decision to order another because of all the activity around the chest. It should now show nothing if chemo has done its job, so it would be nice to see that. I really felt like that was the angle he was coming from - to reassure me that I was cancer free. I am curious about the Vit D - he was so funny, he actually ran out the door to retrieve my blood.
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Christean: Good to see you back on here, I was wondering how you were doing. I had issues after my first 3 Herceptin's with bad heartburn afterwards even though I take omeprazole (Prilosec) every day for heartburn issues. I can usually feel the gurgle in my stomach starting shortly after infusion starts and it gets bad. The last infusion I somehow forgot to take the omeprazole but I noticed I never got that gurgling or the heartburn that day - I even ate lunch afterwards and I can never do that. I was thinking about what I had done differently so I can try it again because I felt so good and the only thing I could think of that I had done was that I was taking Cetirizine (Zyrtec) for several days before for a stuffy nose. I kept taking it for about a week after just in case that was it. I don't know if that is what made the difference, but plan to try taking it several days before and then after my next infusion just to see. I already have it on hand and have used it before, so I figure it's worth a shot.
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Had my Herceptin last thurs and for some reason became very sick on Fri with the nausea diarrhea, slept all day. I doesnt usually affect me like that and i hope it doesnt happen again. Thought maybe because of the radiation, my body was just rebelling from it all
Besides the Herceptin I am at the end of this journey and feel so great that all the major stuff is done. My doc does not do PET scans but will do follow-up cat and bone scans. Still have to do stage 2 of breast recon but that will awhile down the road, so I am off to a free summer and time to HEAL!
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Christean I had terrible heartburn during every TCH cycle and I don't usually have heartburn. They started giving me Pepcid in my infusion during TCH #2 and I also started taking oral omeprazole/Pepcid the day before TCH and continued it x 1 week for every cycle and that seemed to control it...0
