ER-, PR-, Her2+ Roll call
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Hi Soriya,
The treatment I am getting is Taxol and Herceptin only for 12 weeks, followed by external daily radiation for 6weeks and herceptin every 3 weeks for a year. It is based on a study whose results were released this last December. It is not yet the "standard of care" for stage 1, with no nodal involvement but will be in the near future I'm sure. My oncologist was very comfortable offering it to me based on the excellent results of the women who participated in the study. 3.8 years out, 98,7% were still disease free. Since I have posted about it, I see that the women in this study are now about 5 years out and still well.
So far, it has been extremely tolerable as a treatment and am soo grateful it was offered to me!
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Michelle14, thank you for the info. Thats great, hopefully in the future Onco start using Taxol and Herceptin only for stage I , Her2+, less toxic in your body.
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Hello everyone! I am a lurker...haha..that sounds so bad!
Anyway, diagnosed with Her2+ breast cancer in 2012, underwent TCH and radiation for about 6 weeks. Now I am freaking out a little as I have been sore under my arm where the nodes were clear but it is a soreness that is constant and if you push on the area (more on the outside of armpit than underneath) it hurts. I have a followup apt with my Radiologist on the 10th. I was just going to wait until then but still also freaking a little!
I have followed many of you on your treatment path!
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mt4ever: wishing you luck on your follow up appointment. Thanks for posting ; were in this together.
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Hi beautiful fighters,
I love this page... Feels so good to read about women and men that have fought hard and are standing on the other side of treatment and doing well. Can't thank you all enough for sharing your stories... It gives me hope.
Well I am almost 3 months out from my last chemo. Doing good weird aches and pains and still fatigued... But who knows what's normal, what's temporary residual symptoms side effects and what is a permante new normal?? Don't know what my new normal is yet
TE's still in place I will have the implant exchange procedure in another month... Can't wait!!!Night sweats OMG I would sleep with ice packs just so that I wouldn't wake up with that awful on fire feeling... About 2-3 months after last infusion of Taxotere and Carboplatin the nightly tourure stopped. Both antineoplastic medication suppress all normal regulation in reguards to hormones... Hope they stop for you all as well.
It's hard I worry for the future... I want to see my son launch... But I can not control life so I just have to give it to God and move forward... It is so hard!!!! My husband and I just celebrated his 2 bday... So fun last year I was so sick from chemo.
Ladies that are 2+ years out when do you stop looking over your shoulder?? Also what is the normal timeline for follow up scans and so forth??
Hugs,
Stacey aka sweet pea
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Hi everyone,
I had Grade 3, Stage 1, HER2+, ER/PR- breast cancer. They did a bilateral mastectomy, Taxotere and Carboplatin and Herceptin. I finished the Taxotere and Carboplatin January 1, 2013 so it is around 15 months and it has been 9 months since my last herceptin.
I still have night sweats. Sometimes during the day too. Last night I woke up literally soaking wet. I had to take off my pajama top and slept the rest of the night with nothing.
Some of the severe night sweats seemed to stop for a time and now they are back. Not sure why.
Just wanted to share my experience.
Congrats to Dottie - thank you for sharing and for everyone else still in the middle of treatment you are in my thoughts, it is tough at times but you get to the other side and things slowly get better. It took me a full year from my last chemo to emotionally feel better. I was told by many on these boards that this is the case for many of us. So, if you are one of those, just hold on…over time, even with permanent long term effects from chemo and surgeries (like I have) it does get better.
Take care everyone,
Julieho
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mt4ever-My Dx date is very close your yours 01/2012. I can understand you worry, I worry about every little pain and ache. I hope everything turns out well (as in most cases it does). Good luck.
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Hello everyone,
I am new. Just had my first treatment yesterday of Taxol and Herceptin at Dana Farber. So far so good. I understand I am feeling so good today is because of the pretreatment steroid and so I am busy getting things done around the house in case I crash! Sure couldn't sleep last night.
Did anyone loose their hair on their treatment?
Any suggestions for a newbie is appreciated.
By the way, I am a 70 year old woman with fibromyalgia and diabetes.
Thanks
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Welcome DeeC,
Best advise is to drink as much fluid as you can to flush the chemo out as fast as possible. The steroids played havoc with my glucose levels so keep an eye on that. I had TCH so hair loss was a given for me. I loved my wig! I was jittery each time coming down from the steroid high. Took clariton (generic loratidine) for bone pain before and after each nuelasta shot. Good luck.
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Sewingnut,
I can guess your hobby!
Thanks for the advice. I am so new at this. It was such a shock to be diagnosed. I was terrified of chemo at first. Read lost of posts here and they were very helpful in giving me some perspective.
Dee
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Tomorrow, April 1, ;-) is my 3 year anniversary from diagnosis. Just had my 6-month scan (Scinti) and got the "all clear" for this round. I thought I would join the roll-call and summarize my experience a bit. I know three years ago I could not imagine being here today--and quite honestly just sitting through my scan brought all of those memories and feelings back. It felt good to come in here and read about others who share a common bond.
I did 5 rounds of chemo it was physically very difficult--I was hospitalized with neutropenia after my first treatment. Neulasta and extra-fluids (I always got at least one extra-bag of fluids after my chemo) got me through. I quite after 5 rounds of chemo because I was struggling so with side-effects AND I was responding well to the chemo--I had a complete response to the chemo. I had a lumpectomy and no cancer was found. A side-effect of the surgery was a serious infection! Which required in-patient antibiotics--but it healed and I moved on to radiation--I forget the number of rounds. And, then continued herceptin through April, 2012.
In terms of side-effects--I think I had them all. And, here is the good news--three years later I almost feel the same as I did before the treatment--and, I do not think about the cancer every day. It took about 2.5 years before I started to feel normal again--prior to that-- I ached terribly, I lacked stamina, gained 15 lbs. and had tons of anxiety. About last summer I started to feel better, my head started to clear up, my body stopped aching, I could walk through a mall again and I began to lose weight--I still have a fair amount of anxiety. I often wonder if that is an actual side-effect of the treatment--not just the anxiety associated with having cancer.
I hope to be back here next year checking in and checking on all of you--hearing the stories and realizing that this is a journey that changes our lives. Thanks to all who have helped me through this experience so far~
Janis
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Welcome to BCO DeeC and jbwhite. Thanks for reaching out and sharing with our wonderful community.
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Janis congratulations!! Thank u for checking in... I am I year out from treatment and is very difficult some times having the anxiety feeling the worry of what if...
DeeC I am sorry u have to go through this I agree with the other ladies stay hydrated also taking a antihistamine Claritin really helped me with the side effect of Neulasta. It took a month or two to build the Claritin up in my system so I would not have the bone pain. I also lost my hair but say la Vee you are a fighter and u have to do what needs to be done. Thank God for Herceptin and these ladies they help me so much to put one foot in front of the other. We will get you though
just really communicate with the md so they can try to make you as comfortable as they can. Juileho thank u for the words of encouragement... Just the worry at times is overwhelming. You get through treatment and then trying to move forward is hard. I will have my TE removed in May and implants placed... Almost there!!! Thank u for sharing your story...
Hugs,
Stacey
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Hi Ladies
I need your opinion on my tx. I had skin sparring mastectomy in Dec. on Left breast with IDC tumors in two areas. Have been on TCH Chemo and saw RO today because I had 3 pos nodes. I will be getting RADS next.
The problem is I have small area in my incision that has never healed. My PS said she would excise it after chemo & before RADS to let it heal. I have TE in place. No infection right now. My RO today says maybe we should do "more of a mastectomy" to take more skin than just the eraser sized non healing area. This I am assuming would mean take out TE leave me flat. He said I would then need a Flap because after RADS and mastectomy reexcision I wouldn't have enough skin for implant.
I am just flabbergasted never heard of doing MORE of A mastectomy. Isn't one enough? I had a close margin to my skin and this is why he is considering this. I just want to know if anyone else has ever had this happen after a Mastectomy?
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2nd time - I too had a skin sparing mastectomy. Two years later I had a chest wall recurrence. All of the docs were flabbergasted since the original margins were clear & generous. I did Taxotere, Carboplatin, Herceptin & Perjeta. It did not totally shrink the new tumors. I had surgery & they discovered a positive lympn node. So back for more chemo - Adriamycin & Cytoxan. Then radiation!!! Since I already had implants from 2011, my goal is to keep them as my PS wouldn't do again after rads - only a Flap which I won't do. My recurrence was close to the skin too, so the rads were comprehensive.
I can't remember where you live. Are you by a major medical complex? Sounds like it's your RO telling you this, which doesn't make much sense? Do you have a separate breast surgeon & plastic surgeon? I think I'd see both of them and then after that get a 2nd PS opinion before taking even ONE more step. Take your surgical records and ask questions about the margins. Oh - and if you have a good relationship with your MO, you should see him too. Don't let anyone push you to have an excision or start rads before you have all the answers you want. BIG decisions ahead. You'll be in my thoughts.
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minus Two - Thx for responding. Wow you have been thru a lot! chemo twice I can't imagine. This aggressive Cancer stinks. can u tell me why you do not want to do flap? I worry about swelling in the abdomen after surgery that I read some of the flap ladies talk about on this site and the fat necrosis. I do live in a big city and have a major hospital with a Medical team trained in DIEP.
my RO is going to talk to my BS and My PS about this before deciding anything.
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2ndTime - I'm not a candidate for a DIEP. No fat before I started and now down 60 lbs thanks to chemo. I'll be 70 this year and just don't want another surgery site for the LAT flap that will involve muscles from my back that I may never be able to get working right again. Also I have enough LE problems w/o adding any more - since level 1 nodes have been taken out & level 2 & 3 'killed' by rads. If I were younger I might think differently, and if I loose the implant I may change my mind. But I think not.
Hope you'll personally talk to your PS & BS too before making any decision.
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2ndtimeforme,
Sorry I have not responded sooner. I would also get a 2nd opinion from another PS.
So for me I was stage 3 at diagnosis and went with my onc ideas of chemo 1st then right mascetomy then rads then recon with lat flap to right with a left simple mascetomy to left. I do have a incision to my back with a horizontal incision to the radiated side. My PS just laid all of the risks what if... This is how I choose to address the damaged radiated side. I made it through the big surgery and currently have TEs in place.
If your long term goal is to have the final look of implants I would go with the lat flap. I know it sucks more than words... I hate cancer but do what gets rid of the horrible cancer and gives you the higher probably to rid the cancer. I'm sorry this happened to you. With the Lat Flap procedures the muscle is not taken off its blood supply so the muscle flap holds a lot better than with the DIEP surgery.
I hope that was helpful...
Pls PM me if you need any additional questions I can answer. I will keep u in my prayers.
Hugs,
Stacey
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Hi ladies! Just wanted to check in and give a little hope to those newly diagnosed. I was diagnosed Dec 2012 so I am a little over a year out. I had a 4cm tumor in my left breast and many positive nodes. I also had inter mammory tumors. I was stage 3B, negative for ER PR, grade 3, and HER+. It was all so overwhelming when I found this out, and all of the literature regarding HER+ was very disheartening. But, after chemo, BMX, and radiation, I am happy to say that I am NED!
There is hope and you can get through it! I know that reading these threads and hearing similar stories of hope was a Godsend for me when I was first diagnosed.
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NicNak - thanks for posting. It's always so good to hear positive stories. I'll be on Herceptin for the rest of this year, but supposedly chemo, surgery & rads have me "clear" again.
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Hello all:
Just dropped by to say I am over 5 years out and feel better than I have felt in years. I am grateful for this community and you are all in my thoughts and prayers.
Keep moving, loving and healing.
Rita Bold
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Thank you Rita....needed to hear that today.0 -
Just dropping by to say that I have one more herceptin treatment on May 2nd and then I"m done too. I had my nipple tattoo this past Monday so it's pretty much just "observation" visits from now on.
My focus now is moving forward. Which is hard....but neccessary......and I"m getting my first haircut today since losing my hair last May!
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Ukkate, i am 2 months behind you. i remember i was reaching out to you on my first first treatment. i agree moving forward is hard, but we have to do it.
Yay on your first hair cut. i will have my TE exchange on may 16...kinda nervouse about it. my PS will take some fat from my upper thigh n tummy to fill up indentation on my upper breast bone. anyone had that done? And how was the results? thanks ladies !!!!0 -
I'm checking in- will complete last AC in a week- then taxol/herceptin/perjeta. Hoping it goes smoother than AC. Pissed as hell about dx this week. Dark night of the soul. Bless us all and deliver us.
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Mscaruso- You have done the hard part. Taxol+H is significantly easy for most people. Hang in there, you will get past all this.
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Hello everyone, start chemo, Taxol and Herceptin on Wednesday of next week, I am a bit scared. Will try this without a port, will see how that goes. I've been feeling like a bundle of nerves since diagnosis in March 2014. Trying to hold it together.
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MaDee 53: I know just how you feel. This journey is difficult, always remember that you are a survivor each and every day. You CAN do this!!!! We've all been there. The light does get brighter as we continue to fight. Stay strong and know that we are here for you and in my prayers.
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MaDee53,
I was DX in January and started Taxol/Herceptin the end of March. Just had my 7th treatment, 5 more to go before Herceptin alone.
Hasn't been too bad. Get premeds to help with SE. I have lost a lot of hair. My hair was already short and that made it easier. I would recommend getting a short haircut. I did not shave my head but I did buy a wig I wear out. I can still wear a baseball cap. I am not a scarf person but did make some tee shirt hats. Easy and instructions on YouTube. Time will tell if I am going to lose it all. Doc says maybe not.
It is different for everyone. Some tired days plus I am 70 years old so my be harder on me than a younger woman.
Dee
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MaDee53,
Sending healing hugs... I was scared out of my mind the anxiety was awful before starting chemo... I know how u feel. I am so sorry u are going through this! I hate BC!!! I know u can do this!!! Every time I sat in the chemo reclining chair I thought !!Die Cancer Die!! Helped me think of the chemo as my helper to kick this cancers butt!!! Then I would feel less scared of the chemo it's self... You are getting top of the line treatment for HER2++. I agree with the other ladies pre-meds will help and take meds when they are due pls don't wait till u have symptoms. Please vent cry scream to us... We are here u will get through this.
Mscaruso u are amazing!! The next round should be easier on u I hope. Keep kicking butt!!! Sending u hugs and prayers hope SE are manageable.
Stacey
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