Taxol and Herceptin only for stage 1 HER 2 positive?
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SpecialK - Thank you so much for your information and I will pass this on to my daughter. I just wrote down another question for the MO! Thank you, thank you!
DeeC - I read about Herceptin and like you was a little scared especially since they did an EKG at the pre-screening and it was abnormal! I'm 62 - right behind you! My cardiologist gave me an echo-stress test before the surgery. I did fine and he gave me the go ahead. I also called him to let him know the possibilities of being on some powerful meds as treatment. He said I was good to go. He will be checking on me periodically through all of this. My next appointment with him is 6/29. I also scheduled my husband to see him since he's 67 yrs old. It's time for a heart check up for him as well. You may want to make an appointment with a cardiologist in your area just to keep tabs on you as you go through this process. I'm sure you will be fine. It's more of a "peace of mind" for you.
Good luck!
Mary
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Mary1234,
Your diagnosis is similar to mine. I live in Mass. near the Dana Farber Cancer Institute so chose to go there without question. I did not want chemo, was terrified of it, but the MO here follows the standard treatment for my type if cancer which is 12 weeks of Taxol/Herceptin and then the Herceptin alone every three weeks for the rest of a year.
Link to study info:
http://www.ascopost.com/ViewNews.aspx?nid=10846
As SpecialK said the cancer may be gone from our breast but you never know if some cells are hiding in our body somewhere. This treatment is to get those cells and kill them. You want to do all you can to make sure they are all gone. (My new mantra is 'die you f**kers!' And I don't swear! Wonder if I can get that on a tee shirt?
Back in the chair this afternoon.
Dee
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Dee, it sounds like a tee shirt I would want made too! I don't swear either, but don't these invaders just piss us off? I chose to go to Memorial Sloan Kettering. It's just across the river. It looks a lot closer until you get in the car and deal with the traffic. Thankfully we are both retired so we just take our time and shuffle along over the bridge. Good luck this afternoon.
Hugs
Mary
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I have found a site that was helpful to me and want to share it with anyone who would like to ask a question to experts at John Hopkins University Hospital. It is the breast biopsy section, but it seems people ask questions pertaining to bc as well.
http://www.hopkinsbreastcenter.org/services/ask_ex...
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Mary 1234, Just wanted to give you some encouragement to pursue chemo/herceptin for treatment. Approximately 7 years ago, my mother was diagnosed with stage 1, her2+ IDC, grade 3, but it was very small, 3 mm. She was 77 at the time. She was not treated with chemo or herceptin at the time, due to concern of her age and potential for cardiac issues (just had lumpectomy and radiation). 2 years later she was diagnosed with a recurrence of the cancer, with mets to liver and lung. She has been treated for the past 3.5 years for this with herceptin and various chemos and is still doing relatively well for her age (now 83). The irony is that whenever she has an echo, her heart function is good, even after being on herceptin for so long. I was also recently diagnosed with Her2 IDC and am being treated with taxol/herceptin due to small size and low grade. The side effects have been minimal so far. So, even if it is a small area that has been totally removed, Herceptin is needed (with some type of chemo) to keep any cells that may be lurking from proliferating. I wish I was more aware of this when my mother was first diagnosed with this (at the time, that was the standard of practice) Had she been treated with Herceptin for her first diagnosis, there would have been a much greater chance that she would not have had the recurrence.
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KCL45, Your information is very encouraging. God bless your Mom. Thank God she was able to have the Herceptin/chemo and it is keeping this dreadful invaders at bay. It sounds like you have lots of years to enjoy your Mom. I go through the same, why didn't I do this and why didn't I do that. At the time, how did you know if Herceptin/chemo wouldn't have had a negative effect on your Mom. You didn't. And at that time, maybe it would have. You love your Mom and you didn't want anything to happen to her! She sounds like she is in good hands and with a nice strong heart and has a wonderful daughter who loves her. That's all it takes.
I know what my daughter is afraid of: My Mom had stage 3b lung cancer 22 years ago. She was misdiagnosed here in NJ. As soon as we found out what it was, we went to MSK in NY. She only had a 13% chance of a 1 year survival. She opted for the clinical trial which had a lot of promise. One chemo treatment of taxotere and it started to clear her lungs. The one thing it didn't do fast enough was to clear the very large lymph nodes in her chest. The large lymph nodes blocked the blood flow to and from her heart. She passed away after one treatment at 64 yrs old. I explained to my daughter that every case is very unique.
I will not let my fear interfere with my treatment plan. I will do everything in my power to keep myself healthy and be here for my family.
How often do you get the taxol/herceptin? I heard weekly at lower doses has less side effects. Some get Herceptin once a month. I think I would be a little scared of getting a large dose at one time. Maybe there is a method to the madness.
Thank you and hugs to you and your Mom.
Mary
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Mary1234, so sorry about your mom's misdiagnosis. Fortunately you have a great place to go for your care! I am getting the taxol/herceptin weekly. I've only had one treatment so far, only experiencing a little bit of nausea, but drinking ginger tea has been helping that. I could have sworn I seemed to shed a lot of hair this morning when I was drying my hair. I'm hoping it's just my imagination
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That's okay KC145 about the hair. I heard it may thin out from one of our other supporters on here. We have to sacrifice something to get rid of these nasty invaders. Although my imagination has run wild since my diagnosis. Although I have calmed down quite a bit since the surgery. They should give you a med for the nausea.
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dee - have you had quarterly echocardiograms or MUGA scans? I did not have any cardiac issues - my ejection fraction stayed within the normal range, either during the year of infusion, or after. Herceptin only was easy for me, just a runny nose and some fatigue, but nothing like during chemo.
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SpecialK and All,
I have had one ultrasound at the beginning of treatment. I think I get the next one in 4 weeks after I finish Taxol/Herceptin and go on Herceptin alone.
About hair, mine continues to thin since treatment #4. Hasn't all fallen out so far so I have enough to stick out under baseball cap or bandanna scarf. I did buy a wig and wear it when I want to look good.
This is my usual reaction to treatments:
Treatment on Thursday afternoons, fall asleep in chair from Benadryl. Okay rest of day and feel good on Friday from steroid. Need three benadryl to sleep Thursday and Friday nights. Saturday and Sunday are 'crash days'. Feel weak and shaky, lots of chemo brain. Start feeling better on Monday and usually improve rest of week. Repeat on Thursday.
Side effects: some neuropathy, drippy nose, indigestion, very dry mouth, loss of taste and smell, fatigue, balance off, hair thinning. Have been manageable.
Sometimes I have been able to keep up with my social life and exercise routine, some not. Depends on how much fatigue and shakiness I am having.
One of the hardest things is keeping my thoughts up and not get down and upset about it all. I count my blessings before I get out of bed in the morning. I have had my share of pity parties.
Dee
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Hi Dee,
I know the last we heard from you, you were going for treatment and you were concerned about your heart. Have you had any tests on your heart to follow you through the treatment?
I'll find out next Monday when I meet with the MO what treatment I will be on - it has me a little nervous. Just knowing from you it is manageable, does help me. My age is not far from yours. About dry mouth, Act makes a mouthwash primarily for dry mouth. Maybe that will help.
I think you said you get Taxol/Herceptin on a weekly basis - each Thursday. Then when you get Herceptin alone, it will be every 3 weeks. Did you ask if you can have Herceptin each week at lower doses? What are the mgs on a weekly basis vs the 3 week intervals of Herceptin? When I found out I was Her2, I spoke with a nurse from my doctor's office. She said there was targeted therapy, Herceptin. They usually give it once a month for 1 year. I'm concerned about the dosage for once a month - ugh.
Do they normally give Benedryl?
Happy Memorial Day to all!
Hugs
Mary
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Hi Ladies,
Just wanted to check in and give a little update. Today is finally my last chemo. Praise God!!! : ). I made it through the 12 weeks of Taxol/herceptin only with just mild side effects. The fatigue got alot worse after about the 8th treatment but was still manageable. I had some peripheral neuropathy that went away between treatments. My taste was "off" in the beginning but came back later. I shaved my head after my 5th treatment because of severe shedding but probably didn't have to because I never did lose it all. It is already growing back. I was able to work throughout treatment. I only missed one day of work and I took that mostly because I needed a mental health day! : ). I would have to say that the worst part for me was the hair loss. I just wish it didn't take soo long to grow it back! : (. I am happy to put chemo behind me and move forward with the herceptin every three weeks and I will start my six weeks of radiation in about two weeks. I will keep you posted. I hope all of you fabulous ladies are hanging in there! Thank you all so much for the support... And Thank God for Herceptin!!!
Michelle : )
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Hi everyone,
Am curious to know if everyone on this thread is part of the trial mentioned by Michelle14, or have oncologist who recommended the treatment based on the preliminary trial?
Also, is anyone on chemoport? My oncologist has said it's a possible option for me, though I would have to get a chemoport because of the frequency of the infusion. The attending nurse (very experienced) looked at my hand and conceded highly likely though they can try and see how it goes first, and only if it doesn't go well, will they do a chemoport. Was in tears after that.. one surgery is like a lifetime quota (exceeded) for me, and having to surgically plant a port there just sounds horrifying. Do share and advise please.
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Hi Yensmiles,
I was very, very relieved when my oncologist at Dana-Farber told me they don't routinely use a port. I had 12 Taxol/Herceptin infusions, followed by the every-three-week for a year Herceptin infusions, and never had a problem. For me, as for you, the idea of a surgically implanted device really distressed me.
BUT, many women on these boards have just the opposite experience--they can't imagine doing chemo without a port.
And of course, your own body has something to do with this. If getting a vein every week becomes a problem, and painful, then the port would make sense.
If they're willing to try without a port, I'd go ahead. Best of luck to you!
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All I can say is thank you for all this great information. This is making my first upcoming MO appointment easier and understandable. I got a call today that my 3:40 p.m. appointment is now 8 a.m.. There are so many questions on my pad for the MO. Today, the office person said that my first appointment will be the consult and she will go over the options and she will tell me what she thinks is best for me. Options? I just want to live and make sure this doesn't come back!
Bless you all!
Mary
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Thank you Septembersong and all the best Mary1234!
I'm also curious to know what is the average time oncologists spend at consultation. I got "times up" from 2 oncologists here at 10minutes.. supposedly we're very short of oncologists where i am, and there are long wait times and a crowd in the waiting rooms!
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When I spoke with the person from the MO's office yesterday, she said it should be appox 1 hour for the first consultation. I am sorry to hear that they rush you out in 10 minutes. Have your questions prepared. Hear your options and recommendations and then ask your questions. Then if they try to rush you, say you haven't answered all my questions.
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Hi everyone,
Haven't posted as I had a very bad week of SEs. Totally wiped out most of the week just like last week. Slept a lot and down on the couch most of the time.
When I see my MO tomorrow going to tell him I can't have that every week for another month. They will have to make it easier somehow.
I see my MO every third visit unless I have a problem he needs to handle. I haven't timed it but I don't feel rushed. It might be 10-15 minutes. My nurse usually answers most of my questions.
I am not in a study. I was supposed to be in one for T-DMI vs Herceptin alone but there wasn't enough tissue left in my biopsy to reconfirm HER2+. I am getting what Dana Farber considers standard treatment for small, node negative HER2+ BC based on the latest study.
Most of you didn't seem to have problems getting through this treatment. I don't know why it is hitting me so hard. I was doing well until the 7th treatment. I do have fibromyalgia which causes me some fatigue but not this bad.
Will see what the doc says tomorrow.
Dee
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DeeC Sorry you are having so much fatigue! I am due for #4 tomorrow and I am glad I have a 4day weekend off of work. Wondering if I am gonna start having more fatigue. Did notice a little after last treatment but was able to work. Just getting anxious to see what my hair is gonna do. I feel like it is thinning some but don't notice and falling out. Hugs to you!
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DeeC, I too am so sorry to hear you are having these problems with fatigue. I'm sure they will make an adjustment.
My best,
Mary
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Hi lesliecusana, had my second infusion yesterday, and you were right, I will get taxol and herceptin weekly for 12 weeks, then Heceptin alone every 3 weeks thereafter. The second infusion went good. Doing okay without the port so far. I did experience some fatigue last night, did not get to sleep until 2am or so, took an Ativan is what, I think, put me to sleep. However, I was able to get in some exercise this morning. I live in Gulfport,Ms, but is receiving treatment in Palo Alto, Ca., so I am not working right now during, feel very lucky to just be able to concentrate on me getting better mentally and physically. Much (((hugs))) and Prayers to everyone.
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Hi DeeC, it is so awful that you are experiencing these side effects so late in the treatment after you were doing so well,. I pray that it gets better for you. My doctor explained to me, if I experience side effects, such as those you are experiencing, he would just lower the dose. I am pretty sure your doctor can make it better for you. Hang in there.
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Hi Dee,
I just wanted you to know that I hardly had any side effects worth mentioning until about my 8th or 9th treatment and then the fatigue came on out of the blue. Seemed to be bad for a couple of treatments and then I had a good week again. Not really sure why that was but it was immensely annoying. After my 11th treatment, I felt pretty good, way better than after my 9th or 10th. Just had my last one yesterday and I am totally exhausted again. I seriously hope it doesn't take long to get it out of my system now that it is finally done! I will keep you posted. Hoping for a good week for you!
Michelle
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Hi Yensmiles,
I just finished my 12th weekly taxol with herceptin treatments without getting a port. I too, just really didn't want anything surgically implanted if I didn't absolutely have to. I am also an RN and know that I had plenty of good veins to work with and that I could get a port later if I wound up feeling I needed one. I did notice that the taxol is hard on the veins because after using the same vein twice (not even in a row), for chemo, I could feel the taxol going in and knew that the two use veins would probably not be good veins any longer. I never felt the herceptin infusing or any of the pre-meds, so I am certain that the only drug that was damaging the vein was the taxol. I still have plenty of veins left for the rest of the herceptin infusions and am glad I made the choice not to get the port.
If you have good veins to begin with and you don't mind the weekly pokes, you will be fine.
Best of luck to you as you start your treatment.
Michelle
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Thanks Michelle for the information! I only have ONE visible vein...
have been told to tie my arm (as when taking blood) and then exercise by clenching my fist repeatedly to make the veins more apparent and bigger.. good news is i do have a few options of treatment, though this was recommended also to minimise side effects while enjoying the benefits of a taxane as well. Dee, hope you're feeling better today.
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Hi all,
I talked to my MO at my appointment Thursday and explained the severe fatigue I was having the past two weeks. I thought maybe he would lower my dose but he gave me a no
chemo week.I feel like a kid just let out of school for the summer! I was able to drive today (Friday) and run some short errands. Still feel a little wobbly but much better.
He wasn't sure it was the chemo or getting over the infection I had the end of April. I think chemo.
Hopefully I will recover this week and be ready to do it again (NOT).
Went out to Chili's for
dinner. First time out in two weeks. Yeah! (even though I couldn't taste much I still enjoyed it.)Thank you all for your concern. I appreciate it very much.
PS: My nurse has trouble with my small veins. They heat my arm with a warm blanket and that helps. Also, I drink as much as I can before my infusion appointment. So far so good.
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DeeC,
So happy to see you are back! I'm glad they gave you a little vacation from the meds. That's probably all you needed to get you going again! Have a great weekend and enjoy!
Mary
((Hugs))
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Yay DeeC glad u got a break! Feel better!
MaDee glad you are doing well and staying fit!
Started losing my hair this week:( gradually increased thinning no big chunks yet! Have a short cut already!
Wish you all the best!!!
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Lesliecusana,
My hair gradually thinned on the Taxol/Herceptin. It thinned fairly evenly all over. I have had 7 infusions and I feel the need to wear something as I don't like the way it looks. I am told it may start to grow back once I am off the Taxol.
Still feeling much better. Went to see my oldest granddaughter play softball today.
Dee
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Does anyone know what the mgs are for herceptin and taxol for once a week infusion/12 week plan? After the 12 week infusion of taxol/ herceptin is over and you continue on with herceptin, what are the mgs when it is given every 3 weeks or once a month?
As you can see, I am getting a little anxious about my upcoming appt tomorrow with the MO (my first appt). I did so much reading, researching and gathering information from this forum. So hopefully, my MO answers my questions kindly.
My hair is short already, but I will be getting a much shorter haircut this week - something like a pixie. I'm preparing myself for the inevitable.
DeeC, I'm so happy that you are feeling much better. Grandchildren give us that magical touch to make us feel even better! You are giving me hope about the meds. At least I know if I have a hard time, the MO will help me through it.
Today is my granddaughter's dance recital - that will help me get my mind off of things!
Mary
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