Taxol and Herceptin only for stage 1 HER 2 positive?
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Codi10... So awesome to hear that you ladies are still doing so great all these years later!!! : ). Gives the rest of us hope!!! : )
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I will be starting taxol/perception soon. I'm trying to plan ahead. How much hair do most people lose? Reading previous posts, it sounds like there is significant shedding, but not all? Has anyone kept enough hair to not require shaving during treatment?0
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I have had 6 Taxol/Herceptin treatments. My hair started to fall out after #4. I had short hair already so it didn't look too bad as it was gradual. I would get a short haircut before hand just in case. I have not shaved mine off as I like the look of some hair sticking out under hats. I did buy a wig and wear it when I go out. Time will tell how much I lose. It is coming out evenly, but if it starts coming out in hunks here and there I will cut it off. My nurse said she thinks mine will shed some more but not totally fall out.
Took me awhile to get used to the idea of loosing my hair. I am resigned to it now. Those that love me don't care. It means the chemo is busy killing any bad cells I might have.
I am 70 years old and retired. That may make a difference in how I feel about it. I can see it being much more troublesome for younger people.
Dee
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Wow, I was just reading through the posts. I have my post op appointment tomorrow. They will be setting me up with a radiation and med oncol. My margins were negative as were my lymph nodes. I am 62 yrs old and wondering what is going to be my future treatment. I know I'll soon find out, but this is so overwhelming. I am ER-PR- and HER2+ and this is pretty much freaking me out. My tumor was only 5mm. I know this sounds like a stupid question, but what does it sound like my treatment plan will be at my age? This is so scary. I know every case is different, but somehow it seems like it's not. Any input you may have will be greatly appreciated. Thanks. Hugs and good luck to all.
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Mary,
I was diagnosed Jan. 2014 and your diagnosis sounds similar to mine. I am 70 years old and age doesn't seem to matter if you are healthy otherwise. I take Metformin for diabetes and have fibromyalgia.
I had lumpectomy on Feb 14th, Valentine's Day won't forget that!
My treatment is 12 weekly doses of Taxol and Herceptin, then Herceptin alone for 9 months once every three weeks. I have radiation in there somewhere.
I just had treatment #6 of Taxol and Herceptin.
I was very freaked out and scared for quite awhile. Gathered as much info as I could through reading and internet. Lots of good sources on reputable sites such as American Cancer Society. Lucky to have one of the best cancer centers near me, Dana Farber out of Boston, MA, has a clinic near my local hospital.
Good info from women on this site, too.
Let me know if I can answer any questions for you. You can get through this!
Dee
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Dee,
Thank you so much for your help.
I went for my post op appointment and she went over the results of my pathology report. I also live a small distance away from a terrific cancer hospital - MSK in NYC. My appointments have been set up for the MO and RO. I don't know what the medical plan will be for me, but I am almost confident that it will include Herceptin. Did you get any side effects? How sad for you to get such news on Valentines Day. It's sad on any day. I was in total shock. The NP gave me a great report yesterday and a good outlook. I hope we never have to deal with this again!
Hugs
Mary
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Mary,
I do have side effects, but they are different for everybody. Not too much the first few treatments. Dry mouth, nose and throat; loss of taste and smell, sort of a feeling like having the flu for a few days. My hair started to thin after the 4th treatment and has been gradually thinning since. I had short hair anyway so it wasn't too noticeable at first. I bought a wig two weeks ago to wear when I go out or I wear a baseball cap. I did not shave my head as some do. Some slight neuropathy in fingers and toes. Nurse said take 100mg vitamin B6 twice a day to help with it.
I am lucky I am retired and have my husband at home to help out. I can rest when I need to. I do try and keep up my water aerobics and yoga classes, exercise is important even if it is just a short walk. Good for the body and mental health.
My infusions are on Thursday. Because they give steroids with it I feel good on Friday, they I start to 'crash' on Saturday and sometimes Sunday. Tired and weak usually. Monday I start to feel better, mostly normal, at least my 'new normal' LOL.
Write anytime, I am here.
Dee
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Hello, my diagnosis is much like both of you, DeeC and Mary1234, I will be starting Taxol and Herceptin, within a week are so, good information, I was wondering about side effects, and whether or not I will be able to do some type of exercise. My oncologist first said that my hair will probably just thin around the edges, then he said, my hair will fall out. Even if it just became thin around the edges, and I'm sure the top, still would not be good, because I have Sisterlocks, and they would just fall off anyway from the roots thinning. Debating whether I should just cut my beautiful hair off before I start my treatment. This SUCKS!!!
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Hi Mary1234, your treatment will most likely be Chemotherapy(Taxol) for 12 weeks, with Herceptin for 1 year., followed by 5 to 7 weeks of radiation. This is my treatment plan, and my her2+ tumor is 2mm.
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Thank you so much for this information. This site is wonderful for us to keep in touch and talk with those who have something common with each other. We learn from each other - how wonderful. Thank goodness we have a targeted therapy for this type of bc. Did any of you see the movie Living Proof? I got it out of the library and just couldn't bring myself to view it. I didn't want to "think" cancer again. With our tumors being so small, you wouldn't think we would need chemo, but it's probably better safe than sorry. MaDee, you show that you had on 3/11/14 DCIS 4cm, then on 4/8/14 it is IDC less than 1cm. How did that happen? My hair is short now, but I'm thinking of a very short hair cut soon.
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Having HER2, I am almost sure I will be given Herceptin. However, the MO may also want to put me on chemotherapy. A friend of the family who was on chemotherapy for a different type of cancer advised me to not eat anything 4-5 hours before chemotherapy. He said the reason was so I didn't get sick. Is this the case for those of you who have started chemo already. I am a bit nervous about all this. However, I just want to get through it and put this behind me. Also, my surgery was on 4/29. I am not seeing the MO until 6/2 and the RO on 6/10. Seems so far from my surgery.
Thanks for you advice.
Hugs
Mary
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Hi Mary,
I have had 2 weekly taxol & herceptin and no nausea at all! Tad bit of indigestion Pepcid takes care of that! Really no s/e at that I can tell for me but everyone is different! Metallic taste with 1st one but less of it with 2nd! Best wishes to you!
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Mary1234,
I would not skip a meal before chemo. My treatment schedule puts me at the cancer center at lunch time so I usually eat while getting my infusion. They serve us lunch! I understand having something in your stomach helps with nausea. By the way I never had any nausea. Pre-meds help with that.
I just had Taxol/Herceptin #7.
Dee
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thanks everyone for sharing your stories. So informative and reassuring to read posts from folks that are going through the same things as me! I had a BMX two weeks ago and tomorrow I meet with my BS and MO. Was hoping and praying I wouldn't need chemo, but what with being HER2+ it's gonna happen.
Have a million thoughts and questions running through my mind. Hopefully I will feel a bit calmer once I have a plan in place.
Thanks
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Mary1234, the core needle biopsy showed that I had DCIS, high-grade back in March 2014, my surgery was on 4/08/2014. Going into surgery I was thinking I was just going to have this partial mastectomy, followed by radiation, and I would be done. However, in the tissue removed, there were several micro- invasive foci that were all less than 1mm, and a invasive tumor that was 2mm, all of it was Her2 positive; this upgraded me from stage 0 to Stage 1a. Now chemo and herceptin is involved. I start my treatment on Wednesday this week.
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MaDee53 wishing you the best for your 1st treatment!0 -
DeeC, thank you for letting me know your experience. It's so much better to hear people who have the same dx as me. I'm sure he was on something quite different.
Lynndiedre, I did the same thing as you. I was so shaken up but I did calm down quite a bit once the BS removed it. I wrote down so many questions for the MO (hope he/she doesn't throw me out of the office). Just let your MO know that you want the best treatment available so you don't get this "incidence" back. We will make it through treatment. I don't know if you all know but there is a website "ask john hopkins". Experts answer your questions. I found them to be pretty helpful as well, but nothing beats our friends here on this site!
MaDee, Good luck to you on your 1st treatment! You will have to keep us ladies posted! Send in the army, navy and the marines to hunt for these sneaky invaders!
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Hi,
I would like to hear your experiences with just Herceptin. I have 5 more of Taxol & Herceptin then the 9 months, every three weeks of Herceptin.
I understand because it is given every three weeks it is a triple dose at infusion time and this scares me.
Thanks,
Dee
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DeeC,
I may not be on just Herceptin. I won't know what I'm on until I meet with the MO. I know what you mean. When I was concerned about being Her2 positive, I called the BS's office and the nurse said not to worry, they have a medication for that, Herceptin, given once a month for 1 year. That's worse that every 3 weeks! I will need to question this with the MO. I was reading that Herceptin given on a weekly basis may lessen the side effects. I wrote this question down as one of my many questions. Maybe you should do the same.
Good luck.
Mary
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Mary - I think Dee means she wants to know what people's experiences are when they have finished the chemo and Herceptin combined and have moved on to Herceptin alone for the remainder of the year. She is already receiving Taxol and Herceptin now.Dee - I had a runny nose and some fatigue towards the end of the year, but Herceptin only infusions were a breeze.
It is almost impossible to find an oncologist who will give Herceptin by itself, not combined with chemo because it has not been studied in this way, at this point. There are a few people who receive Herceptin only infusions, but they are few and far between and usually are either older individuals or those who have a medical co-morbidity that prohibits receipt of chemo drugs. Generally, Herceptin is combined with whichever form of chemo is chosen, given concurrently either weekly with Taxol, with dose dense Taxol after AC chemo, or every three weeks (or weekly) with TC chemo, then continued either weekly or every three weeks for the remainder of the year.
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Special...This is a current trial that is recruiting elderly HER 2 positive patients to study Herceptin WITHOUT chemotherapy:
http://clinicaltrials.gov/show/NCT01104935I wonder if enough brave patients will sign on for this trial.....
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And you are correct SpecialK....The Standard of Care according to NCCN guidelines is to give BOTH chemo and Herceptin....
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voracious - I think the operative word for the trial is "elderly" and it tracks with what my awareness is of what some oncologists are doing outside of formal trial constraints. I definitely hope that the trial provides some conclusive data, it would certainly be useful and germain to the conversation about chemo and Herceptin use.
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SpecialK....I was very pleased to see that the trial was designed for "elderly" patients. For younger patients, IMHO, I think it is a very risky decision. Let's hope that 300 brave older women sign up for the trial. There's also a trial for Her2 negative +1 and +2 which is underway which hopefully will yield statistically significant information. However, as of now, the Standard of Care is to give both for HER2 positive disease. You are correct that some patients do seek out physicians that will only give Herceptin. Honestly, I'm quite surprised when I hear that some physicians do buck the NCCN guidelines and acquiesce and agree to give Herceptin alone.0 -
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voracious - I am familiar with the B-47 trial. I participate in a Her2+ vaccine trial which has two arms, the GP2 arm and the AE37 arm, and originally designed to test the efficacy of a vaccine for Her2+ patients who have recently completed therapy (usually chemo and Herceptin). They determined at a point in the midst of this trial that the AE37 arm is also thought to provide some protection for lower expressing Her2+ patients who have not had Herceptin (1+ and 2+, but not 0) so they included them in the trial. Sorting into each arm is based on histo-patholigical tissue type, so you have to be A2- (tissue typing independent of anything to do with breast cancer) to be sorted into the AE37 arm.
I think there are individuals who are very opposed to chemo that are Her2+ but are willing to try Herceptin - I think there are a few maverick MOs out there who feel it may offer enough benefit that they do indeed give Herceptin by itself, even though it is not in accordance with accepted treatment guidelines.
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Special...without a doubt there are a few maverick clinicians offering Herceptin alone and a few maverick patients doing it! I'm very curious to see if these studies accrue enough patients and yield statistically significant data....
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As I get closer to my appt with my MO 6/2, it is giving me the jitters. My daughter thinks that since they took it out and I had negative margins and neg lymph nodes, it's over. I am a cancer survivor. She is concerned that the side effects will outweigh the benefits of Herceptin and possibly chemo. She is also concerned that how many people being on Herceptin had no effect on recurrence. It is all just mind boggling. I want to do whatever it takes to not have a recurrence. In your opinion, does it seem like I will have to be on Herceptin? and with added chemo? I have listed 20 questions for the MO - I hope I don't get thrown out LOL. I know this is such a vague question, but opinions from my fellow supporters would be appreciated.
Have a wonderful holiday weekend. Stay safe!
Mary
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Mary - the standard of care is to provide Herceptin and chemo together. If it is determined that your mass is large enough (usually over 5mm) to make you a candidate for further systemic treatment, that is what they will offer. Your daughter needs to understand that chemo and Herceptin are treating your whole body - not the tumor in your breast, so the clean margins and clear nodal status are great, but not what systemic treatment is addressing. Her2+ cancer is particularly aggressive and while there are some who have recurrence or distant metastasis after treatment, there are more that have it without treatment. Your oncologist's job is to determine if your situation warrants further treatment - at your appointment ask for a thorough explanation of why your physician thinks you either will, or will not, benefit from chemo and Herceptin.
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Hi,
Yes, my question was what SE did any of you have while on the Herceptin only part of the Taxol/Herceptin protocol. That is Taxol/Herceptin weekly for 12 weeks and then Herceptin only every three weeks for the rest of a year.
After my last infusion of TH, #7, I was just wiped out for most of the week. I usually recover after a few days but not this time. Most of my hair has thinned out but still have some. Thursday is my infusion day so back at it today.
I was hoping to hear it will be better with just the Herceptin and I can get back to some of my former life.
Anyone have heart issues with Herceptin? I do worry about that mostly because of my age. My heart is 70 years old!
Dee
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