TRIPLE POSITIVE GROUP
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Congrats Bren on the good news!!!!
Special K congrats on your daughter's graduation
I'm just counting down now. next Monday, May 10th is my 5th treatment. I'm so focused on the chemo being over. I hope my energy will return since this all started I haven't exercised at all. I did prior zero bc.0 -
Yay Karen...glad you are doing ok!
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Oh Flavia I hate to hear what u went thru, OMG how horrible for u but I'm glad everything is all right, I think if they thought it was a problem u would not go home.
And call u'r pharmacist, they know all the drugs u are on and know what u can take.
Karen we told u and I'm so happy it went well--
Sasha No one blames u for counting down, that's for sure.
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karenm, glad your day was uneventful.
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Flavia - uggh, I feel your pain. I too suffered a lung collapse when my port was placed. Lung collapses hurt like *#*!!*!
It does make one think twice about any future surgeries that are elective.
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Pbrain, agree with all that woman is an idiot. I am totally a hypochondriac now – every oddball symptom I can’t immediately explain and I’m afraid it’s mets. Unfortunately I have a lot of oddball symptoms. I’m totally calm about it until I have one of them, but I have a lot of them so I spend a lot of time not being too calm! Always have, actually. Bren I admire your attitude! I can see how it would get easier over time. For one thing, there are always those freak stories about women like us who present as early stage, but then (NOT like us) turn out to have been stage IV all along. Those are rare of course but they don’t have a definitive way of ruling that out. So that frightens me. I think once I’m a couple of years NED, then it will be easier to rest assured that I am NOT one of those women. If it comes back, and I certainly hope it doesn’t, it could once again come back as early stage.
I had a biopsy for a lump in that same area. It turned out to be nothing and I shouldn’t have had it. Should have just gotten a needle biopsy – it was a “mom was right” moment – it was awhile ago and they didn’t do needle biopsies in the smaller city I lived in at the time. Better to go home to LA for a visit…..
Leslie I also did the cold caps. I don’t think there are a whole lot of us who relished the idea of having chemo, but research supports that giving us the best odds of survival, and it’s doable. Not the most fun time in your life but for some of us, myself included, it wasn’t that bad.
Of course this whole discussion was days ago, I'm sure everyone has moved on by now! Oh well I get busy and behind sometimes.
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Am I the only one here who did weekly herceptin infusions while doing the TCH routine? In other words, I had 6- 3 week cycles of TCH, H, H, TCH, H, H etc, for 18 weeks!! (Actually, it was 19 weeks in a row of infusions because right after the 18 week cycle, I started the dose dense herceptin, which I now do every 3 weeks.)
My MO told me that was the protocol. Had I known I could have done dose dense herceptin all along, and only gotten 6 TCH infusions, I soooooooooo would have done that!!!
Chicka, I would not go alone. If you plan on doing the icing, you will need somebody with you to feed you the ice chips (your hands will be immersed in ice, so they will be useless!) I used to bring my friends and make a day of it. As others have said, you also don't know how your body will react to the meds. In addition to the benadryl, I also got lots of anti nausea meds which made me slightly woozy.
Flavia, so sorry to hear about your ordeal. I hope you recover quickly and smoothly!
Karen, did you do the icing?
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thanks for the chuckle Iago :-)
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And thank you everyone for your kind thoughts and words.
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thanks Lago, I have learned a lot from you, even I didn't post to much...yes I think it is LE. I will see my BS and MO this week. I didn't do any special massage, just myself sometimes and I try to keep it up every time is possible . I am right-handed( the surgery side) and I work full time, a big part of my job is physical ( I am a chemist) and with all the things at home ( cook, clean, laundry etc) it is very easy to forget to take care. just I wanted to finish with herceptine and to try to forget........but with LE - impossible
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ashley my LE is very manageable. I wear a sleeve during the day. My fingers don't swell so I don't need a glove although I still have one just in case. I do exercise but that's it. I take precautions though. I wear gloves (I keep playtex in business) when I wash dishes or clean house. I now have the softest hands. To date I have never had an infection or cellulitus. Not sure if you know about this site but lots of info here: www.stepup-speakout.org
Yay Karen!
ang7894 you can always ask your pharmacist about drug interactions even OTC drugs with your current medications.
Shasha10 you're in the home stretch. After my 4th tx I was diagnosed with LE and started to get stiff from chemo so that was about the time I was "I don't want to play anymore" and really wanted to be done too. I had stopped exercising after my 4th. I wish I hadn't but it was so cold out here in Chicago (December/January).
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Chickad, I think it’s not a bad idea to have someone with you. It’s nice to let people do stuff for you and you might get hungry or something and want to send your person to get you something to eat. Take your mind off of it, whatever. I definitely needed someone with me but then I did the cold caps, which are a big pita (but totally worth it imho). For herceptin I’m by myself, I can get some work done. It’s kind of a long day, but I’m also on a clinical trial so that makes it take longer for me.
Quite a few of us had the same regimen – 6 cycles of taxotere, carboplatin, and herceptin every 3 weeks, then herceptin every 3 weeks for the rest of the year. Then rads, perhaps, then tamox or another aromatase inhibitor.
Flavia, egad! What an ordeal. So sorry that you had to go through that.0 -
cgesq, I am on the same protocol--tch, h, h, tch, h, h,... for 6 cycles, then h every 3 weeks to finish out the year. I didn't do the icing. Forgot all about it.
Still feeling OK. Fingers crossed.Slept like a baby last night. Wonderful.
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Glad to hear you are still feeling okay Karen!
I know my RO said radiation comes after chemo, but does it come after the year of Herceptin is finished or does it come after the 4/6 weeks of the T and C ?
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Chick it might have changed but my rad came after I was completly done with all of chemo and Herc. I remember cuz in June of 2007 I tarted chemo and June of 2009 I got rads--it just worked out that way.
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Hi ChickaD - I just recently finished rads, had after the chemo but not finished Herceptin. Tamoxifen or aromatase inhibitor are often started after rads is completed
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Chicka D,
The timing of radiation varies according individual treatment plans. Most early stagers who get radiation do surgery first, chemo and then start rads while still doing HErceptin. I had chemo first , lumpectomy and when sufficiently healed from surgery started a full course of rads while continuing Hercptin every 3 weeks.0 -
I am new to the Board today. I am Triple Positive. Completed my last chemo last Tuesday! I will have Herceptin of course another 11 times at 3 week intervals. I enjoy reading all the posts and they are most informative. When I was initially diagnosed the HerNeu2 thing scared me so badly but my Oncologist has been very positive about my prognosis and I am going to take him at his word! Thank goodness for Herceptin!
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Thanks ladies...seeing MO tomorrow for final test results (Oncotype/AIb1) and final treatment plan and chemo scheduling and want to sound informed!
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LizA17 Welcome. All I can say is this August 31st is 3 years since my BMX! I'm still here and NED! Also stage II. I too was scared of the HER2+ but the new drugs for us make triple positive 2nd best prognosis. We used to be one of the worst before Herceptin. Big change!
ChickaD keep us posted.
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ChickaD, I hope the testing with AIB1 works out for you as a HER2 positive, especially with the Oncogype Dx, and would love to hear your onc's take on it as well as your take on it once you have the results.
LizA17, welcome to the group, sounds like you are on your way!
A.A.
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Dana I had my last chemo May 30th and started radiation June 16th while getting herceptin,actually I had radiation and herceptin on the same day one time,just the way the schedule worked out. Had it all at Seidman Cancer Center in Beachwood.
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LizA17 - Congratulations on finishing chemo!
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LizA17,
Congrats on completing chemo! Whew! Right? Even with all the recent controversy on whether we've made progress in breast cancer treatment or not, there is no doubt whatsoever that there has been ENORMOUS progress or us triple positive ladies!
Thank you DR Slamon and the thousands of researchers who set the stage for herceptin, Lily Tartikoff and Ron Perelman ! Lots more progress that is piggybacking off herceptin too!0 -
Lots of ladies will be requesting BRCA testing when they go for their gyno checkups.
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Hi LizA17....nice to meet you and yay on finishing
Eileen...I go to Hillcrest in Mayfield Hts
Cant wait to hear about all the extra testing tomorrow....hopefully I will understand it...lol
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Ladies, when finished with the chemo and you go to just Herceptin every 3 weeks, how long does it take for that infusion? Just curious.
I go for my first treatment of TCH every 3 weeks tomorrow. Very nervous but am hoping to have the best experience possible with minimal SE's.
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30 minutes for me! It was great.
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okiecountrygal The Herceptin only took 30 minutes. No blood tests just checked blood pressure and weight (like that was going to change in 3 weeks) and the usual questions first. Did not have to visit with onc or NP.
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I started radiation three weeks after the end of chemo, and I continued to have my Herceptin every three weeks during radiation. Radiation ended at the end of January, and I am still doing Herceptin every three weeks. I have four more to go, and should be done August 2.
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