TRIPLE POSITIVE GROUP
Comments
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I didn't have a CT to my lungs just lower body (liver etc). I did have a lung X-ray but those aren't all that accurate. They even saw a shadow so I had to do it again with my nipples marked. It was just a shadow from my nipple. I had the same experience as LindaKR with the CT. The stuff I drank didn't taste bad or anything. I didn't we my pants either and had several liver scans in 2 years.
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YEAH ROZEM!!! Congratulations!!!
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I just feel good that I did 40 min on treadmill I then did 10 min of weights 2lbs just starting lol. And 10 sit ups with weights on my stomach .. I WILL do this everyday I will beat this weight issue and cancer
Tamox is doing ok just tired of hot flashes.0 -
Hi, I just started a post under the HER2+ general header regarding me being recently diagnosed. I should have posted it here since I am triple positive. I am 38 years old and have two young boys who are my heart!! I will do anything for them. Really want to reach out to any others out there with young children! I start chemo in 2 weeks. I still don't know if I'm going to do AC-TH or THC. So overwhelming.
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rozem - great news!
I'm a bit quiet at the moment. Frantically busy at work and trying to get stuff all cleared away as we are heading off for 2 weeks holiday at the beach next week.
I am also down to my last 2 herceptin infusions! One this Thursday and then the final one in 3 weeks. I am getting more and more tired and so glad to see the finish line in view.
The Tamoxifen (or maybe it's the Herceptin?) seems to be giving me frequent low grade nausea this past week or so :-/ Am hoping the holiday will relax me and after some rest I'll feel better...
Jenn0 -
Rozem, yay! So happy for you.
Jent, glad you're near the end of tx.
Ang, keep it up, sounds like you got a good start.
Jk, welcome, and so sorry you have to be here. But at least you found us. There is a ton of info, and much support here. Don't be afraid to ask anything, and I mean, ANYTHING. Someone on here probably has gone through whatever! LOL.
Much love to all.0 -
Hi jkeller, I had the choice between ACTH and TCH and decided to go with TCH (whenever I do start!) My decision was based mostly on the SE of heart damage with the Adriamyacin. Knowing I'd be on Herceptin for a year after chemo and Herceptin is hard on the heart as well, I didn't like that risk. The only study that I've found comparing the two protocols is the BCIRG-006 study: http://www.bcirg.org/NR/rdonlyres/eno7mvfpseiqi5g3pernz37zzeavin4f7o5hos4zwlu76clvwkfluhskusgcmnqvyqk7ksb4gdimpmt6xcmkxppnqce/945_GS5_02_+abst+62+Jan+10.pdf I hope this is the link to the powerpoint that shows the latest (3rd) analysis. There's a lot of data, but just try to focus in on the two protocols and what applies to your specific DX. My take away was that the small measurable decrease of recurrence did not outweigh the higher incidence of heart damage and other scary SEs. But that is just my opinion! Feel free to disagree!
Welcome to the club and I hope whatever combination you choose is not too hard on you.
So, I went to PS today and (surprise,surprise) the drain did not come out. He wants to infuse me with the antibiotic doxycyclin on Thursday which he says should stop the draining and also "scar me in" because he is not planning to fill the TE anymore. Does anybody have any experience with this process? I find a lot info on the drug on the web but no mention of using it this way. The only uses I've seen for injecting it is for things like anthrax, malaria, e-choli.....sounds pretty extreme!
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Question,
Do I buy the numbing cream for the port? How long do you apply it before it works? Is it a prescription?0 -
The Emla numbing cream is a prescription lidocaine cream so you need to get it from your doc. Call me a baby, but I always did the numbing crean AND the freezy spray - never had pain from the port access. After I was done with chemo and Herceptin I have gone for port flushes and forgotten to put the cream on - I have felt the difference, so I recommend putting it on. Put a generous blob on and then cover it, kind of mush it down, with a small piece of plastic wrap a full hour prior to chemo.
Welcome newbies! This is a great thread - good info and lovely supportive people!
dizzy - I have not heard of a PS who follows the antibiotic protocol, but maybe it is something new?
rozem - yay!
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Dizzy, I don't know about using abx in that way, but if it prevents them having to remove the TE, I say go for it. I had to have two TEs in the same side removed due to infection, and now they will not try an implant for at least a year. so definetly think about it.
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Rozem, what a huge weight off your mind! I'm so happy for you!
Jenn, have a great holiday and congratulations on being so close to the finish line! I wonder if the Gin Gins candy would help with your low-grade nausea. I have no idea if they're available in your hemisphere but I thought they helped enough to buy them (the cancer center included a small baggy full of them in my chemo kit).
Ang, that is GREAT! I'm so excited for you! Your conviction helps strenghten my own. This morning I met with the integrative physician at the Disney Center and she cited a study that shows that 30 minutes (or more) of walking per day can help cut cancer risks by 30%. I'm going to be increasing my daily walking to 30 minutes versus 20 - although the other day I did 40 minutes without any problems (2 miles plus).
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By way of clarification on the emla (numbing creme), you put it on an hour before and cover it with saran wrap and it works like a charm. I am a total chicken so I asked for freeze spray also and between the 2, I never felt discomfort when the nurses accessed my port. The plastic wrap is so the creme doesn't rub off on your clothing. The infusion nurses will remove the saran wrap when they steriize the area.
Word to the wise....place a glob of the numbing creme on your port, and then push it down with the saran wrap. Don't use your fingers or they will get numb!!
Good luck to all the newbies! It seems overwhelming at first, but it is doable!!!
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Rhonda: I'm a wimp but I never used the numbing cream or spray stuff and never felt a thing but I had the really large power port and it was close to the skin so that could be why. None of the nurses during chemo even suggested it to me either until I moved back to Florida and continued my Herceptin and these nurses used it and were surprised when I didn't want it but fortunately didn't need it.
Welcome new ladies - sad you are here but you are in a great place where you'll get tons of information and support.
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Thank you Moon--
And you to LeeA - you sound like your doing well also. And I did not know by 30% I will take it
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Dizzymom, here's another study on ACTH vs TCH: http://www.uptodate.com/contents/adjuvant-medical-therapy-for-her2-positive-breast-cancer#H517953427
"The combination of docetaxel and carboplatin plus trastuzumab (TCH) is an appropriate and effective alternative treatment for women without evidence of poor prognostic factors (eg, node negative) and those with true contraindications to anthracyclines (eg, preexisting cardiac conditions, borderline ejection fraction at baseline, or prior anthracycline exposure)."
I'm node negative and doing TCH x4. My MO gave me the choice between the 2, saying ACTH is the gold standard, but TCH is just as effective for certain cases such as mine.0 -
Yay Rosem! I am so happy for you.
Welcome newbies! Sorry you have to be here.
That is great Ang. I am trying to get 30 minutes of walking or exercise in 5 times a week. I usually make it. I also read about the decreased cancer risk if you do. In the Anti Cancer book, he claims that walking 30 minutes per day 5 days a week decreases your risk of recurrence as much as herceptin. I think he said 50 %. And it does it without any risk (in fact benefit) to your heart.0 -
I didn't use numbing cream and the prick didn't ever really hurt. Not like it does when you get a needle in the arm for blood. The thought of it is 100 times worse than the actual poke. But, we all have different levels of pain tolerance I guess...if I was going to use numbing cream it woulda been for the shot of Neulasta in the stomach (I gave myself) after every chemo! Now THOSE were not pleasant....not painful, just FREAKY.
CONGRATS ROZE!! WOOOOOO HOOOOO!!
BCBarb, 4 months sounds about right. Your Onc may not recommend an Ooph right away...but you may want one after a few months on Tamoxifen..it tends to make things very messy...lol.
My Onc is anti-Ooph for the most part.
Welcome to the new ladies. I see you're being answered by the awesome women on this thread!
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Thank you for responding so quickly. Thursday is my first chemo and it is approaching quickly so I want to be ready.
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Welcome to all the new ladies, this is a great forum. There are some awesome women on here who have navigated these water before us and have stayed around to guide us along the way.
YAY Rozem! That is so awesome!
Jenn - enjoy your holiday!
About the Emla cream, I forgot it for tx3 and boy was I sorry. I won't make that mistake again.
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jkeller, welcome and sorry you have to be here. I was recommended TCH x 6 for the same reasons that were ably articulated above. I did meet with one oncologist who recommended adriamycin but that just makes no sense to me given that I was node negative stage 2. Not sure if there's a reason to do adriamycin otherwise but the cardiac issue with herceptin made this a no brainer for me.
LeeA, Ang, you go girls! I really hope that statistic works for me because I am happy to exercise.
Linda, Lago - thanks for the input on the scans.
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Rozem, yay, yay, yay! Happy for you.
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I was node positive and stage 3 and the doctor did not want to do adriamycin because he wanted me on herceptin ASAP! His practice does almost all TCH for HER2 postive, but if it's HER2 negative I notice they do some combination of adriamycin, carboplatin or cytoxin, and usually taxol or taxotere.
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Rozem---YYYAAAAYYYY
Jenn enjoy and relax--u certainly deserve it.
And welvome all newbies u r in a good group of knowlegeable women
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Jkeller3,
I was in a clinical trial which used carboplatin/Abraxane/Herceptin..than after surgery I was given adrimycin and cytoxin then finished herceptin ..good luck..use the Emla cream works good I usually applied 45 min to an hour prior..0 -
Took me all night to catch up on everything!
Rozem, congratulations! So happy for you.
EMLA cream....love, love it. Like some of the others, it made a difference for me. I also thought the ginormous needle used to fill the expanders was really painful for me, so I slathered EMLA all over the top part of my foob before my appointment and it was a huge help. It also provided a good laugh for my PS when I came in with my chest covered in Saran Wrap. (At the risk of tmi, check out one of the threads about pain when fooling around. Some have made good use of their EMLA cream.)
Here's a tip....I used press and seal Saran Wrap and it worked great.
I have been away from the boards for a week having my own version of the Guilt Trip movie. I flew to LA on Wednesday to pack up my daughters apartment as the lease expires in a few weeks, and she can't get back from NYC to do it herself. She also has a car that has been sitting there for three months. So....I packed everything in white garbage bags, hauled it down a flight of stairs and stuffed the car full, shipped a bunch home. No shower for two days because the bathroom in her apartment was disgusting. The guy that she shared it with (no relationship, just roommates) is a pig and doesn't clean. I even brushed my teeth in the kitchen sink, which was surprisingly clean.
My son was flying to LA on Thursday night. I finished packing and loading on Thursday at 4:00 p.m., totally pitted out, got in the car, had the oil changed and prepared to eat dinner at a nice Italian restaurant with messy hair and workout clothes. Got a call from him saying they decommissioned his plane due to a wing problem and he was stuck in Indy. So...he rescheduled to Las Vegas the next morning and off I went to Vegas for the night.
Arrived at midnight with a great deal I found at the Trump Hotel. Got out of the car and told them the white trash had arrived, literally as the car was stuffed with white trash bags. Needless to say, when you walk into the Trump in sweats with no makeup, you garner more than a few looks. Had a room with a jetted tub the size of a small pool, filled it up, hit the jets and oh my, nothing has felt better. My feet didn't even reach the other end, and I am tall.
Friday morning, picked up my son and we began our cross country adventure! First night, albuquerque. Second night, Tulsa, then home. Great bonding time with my 28 year old that was really fun.
We stood on the corner in Winslow Arizona.....ate at the Great Texan Steak Ranch, where we watched a guy try to eat a 72oz steak dinner in an hour (he failed....so $72 bill for him. Free if you can do it). I believe this is the restaurant that they modeled the scene in the movie, Guilt Trip after. It looks exactly the same. Saw lovely scenery, had great talks. Loooonnnngggg, but wouldn't trade it for the world. Ate a ton of junk food.
If I have LE, it will be my own fault for hauling all that stuff up and down the steps. It was heavy and my right arm was aching at the end of the day. Finally feeling better today.
Glad everyone seems to be doing well.
I have my two year check up with my BS tomorrow. My how things change.0 -
OMG Fluff u worked like a mad woman and traveled and ate and di so much--the best part was being with u'r son like that tho. Bt u must have been exhausted that's quite a haul. Good for u. U better get some real rest tho. U've done enough for now.
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I just started peeking in on this thread. I am triple positive and started chemo (TC-H) a week ago. My question to the veterans is - once the "official" (TC) chemo is over, and you're just taking the Herceptin, are the side effects much less? Does hair grow back? What is your experience? Thanks, Shoshana
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ablydec, the SEs are much less and your hair starts to grow back. I did the cold caps so I can't speak to the timing of it.
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Soshana,
My hair started growing back after my 5th chemo....it wasn't anything to brag about, but it gave me hope! When I was on Herceptin it grew, and then when I went off Herceptin it took off.
I will say though, don't expect a lot from your hair the first year. Mine was more like fur than hair. But I didn't care. I kept it buzzed for the most part, and exactly a year after final Herceptin, my "real" hair came back..same color, same texture, all of it
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ablydec/Shoshana 5 weeks PFC (post f'n chemo) my SE started to go away. I still had some stiffness with Herceptin but so minor compared to how I felt on chemo. My hair grew at a decent pace but did pick up even more after Herceptin. I really didn't have any SE from Herceptin. I was topless by week 13. Here's my hair transition linky. My hair didn't grow back too badly but it still wasn't the same texture. About a year PFC it started to really look like my hair again. All shiny and not as much wave/cowlick.
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