Testing, treatment, side effects, and more.
Posted on: Feb 22, 2014 10:35AM
I was dx with Stage 1, grade 3, invasive ductal carcinoma, HER 2 positive, er, pr negative in January. I had a lumpectomy and removal of sentinal and two others all of which were clean. The tumor was 1.3cm and there were clean margins. My oncologist recommended treatment with either ACTH or TCH plus radiation once chemo is done. While I was mulling over my options for chemo and not particularly liking either choice, he called to tell me about a newly published study that I might like to know about. The study included 400 women with stage 1 HER 2 positive invasive ductal carinoma with no nodal involvement and clean margins. These women all had lumpectomy's, sentinal node dissection, but instead of ACTH or TCH, they were given 12 weeks of taxol, one year of Herceptin and radiation. The study is 3.8 years old and 98.7% of these women were cancer free at the 3 year mark.
I digested this new info for a while and then met with my team to figure out the chemo plan. I have decided to go with this taxol 12 week plan and my oncologist thinks it is a great choice for me.
I was wondering if any of you ladies had this treatment?
Posts 841 - 870 (870 total)
Aug 22, 2016 11:29PM sandikr wrote:
No they want to do CT scans of my abdomen and pelvis. I had the echogram at the start and all seems ok to date. This dr wants to do CT scans after 6 treatments! Even in the paperwork of the CT scans they suggest 4-6 months for followup. So nobody else is having these scans????
Aug 23, 2016 12:21PM BarredOwl wrote:
Trastuzumab (HERCEPTIN) is a type of HER2-targeted treatment. It is a therapeutic antibody that binds to HER2.
KADCYLA (ado-trastuzumab emtansine) is an antibody-drug conjugate, which contains trastuzumab, chemically linked to several molecules of the microtubule inhibitor drug DM1 (a maytansine derivative).
KADCYLA (ado-trastuzumab emtansine) is the subject of a Phase II clinical trial in the adjuvant treatment of Stage I HER2-positive invasive breast cancer. In this setting, KADCYLA is "investigational." In the trial, it is being compared with the current treatment of paclitaxel plus trastuzumab. For some background information, here is a link to the entry for the ATEMPT trial on clinicaltrials.gov:
There is a thread here about the trial:
The above is for information only, and is not a recommendation one way or the other.
Sep 21, 2016 12:25AM fluffqueen01 wrote:
sandikur-I had an echocardiogram every three months to check my ejection fracture. That was pretty standard. The only scans I had were ones that I begged for. I wanted everything scanned that could possibly be scanned lol. Still do. Usually lose the battle.
Sep 21, 2016 06:25PM Tresjoli2 wrote:
Just reporting that I too did Taxol/Herceptin combo. Now on Lupron and Tamoxifen.
Sep 22, 2016 11:05PM HattieHouston wrote:
I am just finishing a 12 week treatment with Paclitaxel, Herceptin and Perjeta and I spent most of these twelve weeks with few side effects. Initially I had some nausea well controlled with Phenergan and slightly more diarrhea well controlled with Immodium. At my ninth week, my therapy was paused due to edema. A repeat ECHO showed no change in my ejection fraction. I had some mild diastolic heart failure before I began the treatment as I am 74 years old. I have two treatments left to complete the 12 weeks. My hemoglobin has dropped to 9.0 and my white blood cell count has gone down to 3.9. I have had a lot of fatigue and shortness of breath but I have only missed a few days of work. Hope this helps.
Sep 28, 2016 08:53PM - edited Sep 28, 2016 08:55PM by Shantijp
I've just joined this site. I'm really keen to find any studies specifying the use of Herceptin ONLY with no added chemo
I'm from Australia, am a young 63year old. Recently had lumpectomy with clear margins, thankfully no lymph node involvement. Cancer was 7mm with additional calcified area, total being 2cm so I appreciate I was very fortunate for this to be detected early. Unfortunately I am HER2 positive PLUS estrogen & progesterone-receptor-positive.
I know I have to have radiotherapy plus hormone medication for next 5 years. I had severe OA of both knees for past 12years and had a double knee replacement last year and I no longer have any pain and I thought I was now going to start my new life without pain so the thought of going through Chemo and the effect it can have on one's well being & immune system is really causing me anguish. I'm a tough girl and have dealt with a lot in my life and feel I am quite resilient to cope with this next challenge but I definitely do not want to jeopardise my future unnecessarily.
Sep 28, 2016 10:12PM Moderators wrote:
We understand your concerns about chemo, it can be a taxing treatment. We searched our main site, and were unable to find studies with herceptin only; we did find an answer from one of the members of our Ask The Expert panel, which stated that:
Eric Winer, M.D. We do not know that Herceptin will help prevent a recurrence without chemotherapy and I am not aware of studies that use Herceptin without chemotherapy. I understand how you feel and why you may feel that way, but particularly if a woman is at moderate to high risk of recurrence and has HER2-positive breast cancer, she should very seriously consider taking a course of chemotherapy plus Herceptin. http://www.breastcancer.org/research-news/ask_expe...
You should discuss any concerns you have with your doctors, and perhaps together, you can come with a regimen that will be beneficial for your cancer, but won't subject you to come of the side effects you're worried about.
Mar 15, 2017 06:39AM Bluebird1013 wrote:
Just wanted to say how encouraged I am by reading the posts from you gals that are getting the job done. It does feel like a job. Eat right, take care of ourselves, do the treatments. I am on a #2 of 12 weekly Taxol and herceptin infusions. I was hesitant about the port but have to do a year of Herceptin also. A week and a half after surgery it is still sensitive but so glad to have it. Accessing it hasn't hurt at all. The nurse sprays some freezing spray on it going in and haven't felt a thing.
SE 1st time, hard to sleep, pins and needles all over, low back and pelvic pain. Head was on fire one night. No nausea. Just waiting to see how it progresees. Good luck to all. Elaine
Mar 16, 2017 09:25PM NotHerToo wrote:
Bluebird, You and I have the same diagnosis. I had a similar response after the first, because it's a loading dose. The next week a rash, and it's been relatively uneventful since. A couple of hive like sores on my tongue that the magic mouthwash took care of after one use. Minimal nausea. Tired and depressed third day, but walking a couple of miles and hydrating takes the edge off. I just completed #7, and over the hump feels good. Hoping it stays this way. Hair loss and runny/bloody nose is annoying, but I got a wig that is so much like my hair, no one has even noticed. So far so good...I hope the time goes fast for you with minimal side effects and full recovery...for both of us!
Mar 17, 2017 01:52AM Bluebird1013 wrote:
I had my 2nd on 13th. Felt good Wednesday night. Breakout on my chin like big painful bumps. Got up this morning and pimples all over my face. Went to see dr and said it's rosacea. Is that what you got? Told them my arm was still feeling weird. Had ultrasound and have a blood clot in it. On blood thinner now. Yipes nothing else to complain about. Still have my hair but I'm prepared with a wig. You just finished 7? When did you lose your hair? Glad to hear minimal effects on down the road! Take care. Elaine
Mar 17, 2017 04:57PM NotHerToo wrote:
I got that pimply rash too after the second infusion--face, chin, neck and chest. They suggested claritin first, benadryl at night and also called in some prednisone. It started clearing up within hours with the claritin, and at least not spreading, so I never took the prednisone. It took a couple of weeks for it all to go, but didn't want more steroids. It improved each day and it's all gone now. I have continued the clariting/benadryl (generic) daily doses. Sorry to hear about the blood clot. Hope it clears up quickly. My hair started falling out in the 3rd week. I went and got a short military buzz...my hairdresser suggested NOT shaving because of irritation and she was right. Wig went on the next day...chemo #4. I wore it there first, figuring I'd be in good company for the trial run. No one at work even noticed...they liked my "highlights". There is just some light fluff left...like an old bald man. It's actually more comfortable and far less mess in the shower each day. The unnoticed wig helped relieve so much anxiety...I did not really want to discuss with students (I teach), or be identified as that teacher with cancer......Weirdly, I felt overall lethargic, depressed after the 6th, but this week am on the upswing and feel much better. I can't say it's been predictable, but so far so good.
Mar 19, 2017 12:16AM Bluebird1013 wrote:
so glad you're feeling better this week. A person needs an upswing once in awhile! I get taxol and herceptin weekly for the 12 weeks and then just herception for a year. After the 12 weeks I will have 33 radiation treatments. Did you have these already or not scheduled to do it? I had lumpectomy maybe thats the difference. Sounds like you made a good transition to the wig. Is it close to your natural color and style? I have a couple that cancer center gave me. One's too short and one's too dark. Need to find one I'm comfortable with. I'm not a hat or scarf person so I think a wig will work. Last night is first time about 4 hairs came out when I ran my fingers through. Yipes. Except for leg, back and pelvic pain haven't had much else going on the last two weeks. Thankful for that. Have a good Sunday! Elaine
Mar 19, 2017 11:06AM NotHerToo wrote:
I think the hair loss was the most stressful. Once it started it went fast. I'm not a scarf or hat person either. I'd tried a few wigs locally and they all needed work to match my hair. My friend is a former hairdresser and directed me to the Paula Young website...cheap wigs. I found "my" hair..in 2 similar styles and ordered both so some days it just looks like I styled a bit differently. They match in length and color (a bit lighter than my original hair), but close enough. I was hesitant to order because there are bad reviews for returns but I didn't need to so it all worked out. If you decide to risk it, look for whisperlite or coolcap. They're soft and once you get used to it, feels more like real hair and not a wig. The others may be soft, but the local ones were scratchy. I wear the wigs almost exclusively except for bedtime or I'm using the oven. Can't use a synthetic wig near intense heat. I won't need radiation because of the bilateral mastectomy. I hope things stay manageable for you for the duration. The muscle aches seIt's quite an odd journey and can feel lonely. Grateful to you and others for being here to share....take care of yourself!
Mar 20, 2017 01:10AM Bluebird1013 wrote:
thanks I will check out that wig site. Haha on intense heat! I am a consultant for Jamberry nail wraps and they don't take heat either. Have my wraps and wig melt would not be good! I was surprised to find out how many people wear wigs that don't have to. I know stars do but whole new world out there. What day is your treatment day? I am on Tuesdays. So far Sunday and Monday are the days I feel normal. Anyway felt great today and hope tomorrow doesn't let me down! Take care. Elaine
Mar 20, 2017 09:45AM NotHerToo wrote:
Yes, we are such delicate flowers these days...too hot, too cold and we wilt, Ha! If it weren't for the circumstances, I think the wigs are kind of fun. I feel like I'm undercover...no one seems to notice. My treatments are on Wed. and strangely, Monday I start feeling better, but Tues through Th are best. A friend who has been through it recommended it, to function best at work. I'm not so fun to be around on the weekend...my poor family....This week the "cumulative effects" are more noticeable. More nausea, numbness and muscle aches so otc pain relievers help and zofran are my friends. Walking really takes the edge off, but it's an effort to get out. Must force self...Hoping your side effects stay minimal and manageable....Have a great week!
Mar 20, 2017 01:08PM MsBrompton wrote:
Hi ladies, just popping in. I had Taxol back in 2015 and Herceptin for a year. This is to reassure everyone that it does end eventually and you get your hair and your energy back. Hang in there all!
Mar 20, 2017 04:13PM Bluebird1013 wrote:
Yes, Ms.Brompton thank you so much for your post. Relief to hear that it is all worth it the end. Glad you are doing good.
Mar 20, 2017 07:47PM Tresjoli2 wrote:
pretty sure horsegirl did herceptin only. There is a thread on here for people who are her2+ but have really small tumors. Most of us chose taxol and herceptin, but a few did herceptin only. My doctor said she would do herceptin only...but I chose to add the taxol. Good luck with your decision.
Mar 20, 2017 07:47PM Tresjoli2 wrote:
Mar 22, 2017 05:33PM Tara17 wrote:
hi I too have stage I her 2 positive disease and am being treated with taxol and herpcetin based on the Dana farber APT trial. I know it is a good thing to have a small tumor ( mine was 9mm) and be node negative and for that I am grateful but the biology of my tumor has scared me --poorly differentiated , micropapillary , grade 3., hormone negative . I have scoured the APT paper of taxol and herceptin to figure out who were the women who recurred ( 12 women had issues with recurrent disease on this trial of the 400). It is so amazing to see that women who participated on this trial have posted here. Does anyone know from this study what are the characteristics of the women who had recurrent disease despite this chemo for stage 1? Do the moderators medical experts perhaps know ? Thank you . It's a tough journey to try to cope with this disease -I am grateful for the opportunity to be cured , yet have fears.
Sep 28, 2017 10:45PM Anna2017 wrote:
I was diagnosed with DCIS 1.5 mm
My oncologist told me to do the chemo Taxol 12 with Herceptin ,weekly ,I just finished 4. Round chemo and felling great just diarrhea I had after the chemo and I took Imodium.
My question is did you do the chemo or not ?
Should I stop my chemo or continue? To 12
Nov 3, 2017 01:17PM KimCee wrote:
I just had round 2 of Taxol and Herceptin, however, just Taxol this time around. Has anyone on the 12 weekly Taxol only received Herceptin every three weeks?
I am hoping for minimal side effects. Last time around I breezed through adriamycin and taxotere...but I was much younger back then.
Nov 3, 2017 03:05PM - edited Nov 3, 2017 03:22PM by NotHerToo
Taxol weekly for 12 weeks, and Herceptin every three weeks for a year/17 infusions seems to be the standard. Aside from hair loss, and some post surgical infection, it was relatively easy. I only missed a couple of days of work...the first because they go so slowly, and once for a Dr. visit for the infection. Aside from that, I'd work at least part of the day around appointments. It gets exhausting toward the end, but it was manageable. It helped to hear from someone who had been through it. She had a similar experience. That said....everyone is different.
Nov 3, 2017 07:38PM KimCee wrote:
Thank you NotHerToo...I am feeling well so far, just awaiting the hair loss...again! Glad to hear you did well through your treatment too.
Nov 5, 2017 08:41PM NotHerToo wrote:
I followed a LOT of the tips on this board for dealing with chemo. Drinking lots of water, eat as healthy as you can (lots of fruits and vegetables), walking every day, even if I didn't feel like it seemed to be the hugest help, especially toward the end. My friend advised to use the steroid high the day or two after to get things done around the house. She was right. Hoping that you continue to feel well, and don't over-do it. Head off any symptoms...rash, mouth sores, etc. by calling as soon as they arise. I hired someone to clean every other week so that I could spend my energy at work instead of trying to do it all. My family was great, but they don't clean to my standards :-) Sending good thoughts that it goes well for you too!
Nov 6, 2017 02:27PM KimCee wrote:
Thanks!!! I had to laugh with your "not to my standards". Yup, I hear you. My son put all the colors in the washing machine...I learned quickly not to have him do my laundry! I know I need to walk, I know I need to keep hydrated....do I do it? Nope! I am a nurse, you would think I would practice what I preach. I have been drinking more fluids, less coffee. Plan to start walking tonight, it's been super hot in Florida. The steroid high is quite annoying during what is supposed to be the sleeping hours. But fortunately, it lasts about two days, lol. Thanks for your tips and how is the Herceptin only going? You are nearing the end!!! Yay you!
Nov 6, 2017 10:27PM NotHerToo wrote:
I hear you. Grey laundry is not the goal! I love hot weather. I'm in upstate NY and the worst was during winter. Thankfully by March the weather was decent and I have friends who nudged my sluggish backside. those months are a blur now. This whole year actually. Last herceptin is in January. Three more and done. It's been tolerable. It gets harder and harder to go, and hoping once the port is out, to feel more normal. More fatigue, achiness, runny nose, and diarhea, but nothing major. Living normally. I'm not getting any younger either. A bonus...I've lost a few pounds. Between walking and less appetite, that has been a welcome side effect. So no real complaints...just a whine here and there.My mother in law was a nurse and always said nurses don't practice what they preach because they're programmed to care for others. So try to drink up and take care of yourself. Wishing you an uneventful process.