Taxol and Herceptin only for stage 1 HER 2 positive?
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second opinion is good. I took tamoxifen for 5 years only side effect was occasional hot flashes. But I took a hair skin and nail vitamin with it no other side effects. I'm 36. I would check you choose its your life these doctors can just give you their opinion it's your choice and what's best for you and he should not try to make you feel bad
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You may find this article of relevance Systemic Treatments for IDC: Chemotherapy, Hormonal Therapy ...
Also reliable information on IDC — Invasive Ductal Carcinoma where you'll learn about symptoms, diagnosis, treatment, etc.
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The Mods
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I'm glad I found this post my first treatment was today I'm was assured by week 3 expect to lose all my hair. You give me hope I know that everybody is different, plus my oncologist gave me the ok to still take my hair skin and nails vitamins and my one a day womens so I'm anxious to see if it works with the chemo. Thanks for your list I'm glad I found it....
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hi everyone - sitting in the chair for treatment #1. All well with steroid, fell half way asleep for Benadryl, nothing noticeable with the Herceptin, now onto Taxol. IV was way easy (no port yet). Im so happy to finally be getting started!
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to the new ladies,
I am two weeks post chemo. I cannot stress enough how fast it will go by. During the process it seems like it will never end. It does. Drink lots and lots of water - I drank 120 oz the day before, the day of, and the day after chemo. Drink lots of water always but the most on those days to keep the drugs flushing out. Keep moving - even a short walk. I felt worse when I didn't exercise. Take your supplements - l glutamine, b6, b12, d3, and whatever other ones your MO approves.
I'm tired but I'm getting stronger. It's not like when chemo ends there is a magic wand that makes you feel 100%. But I'm getting there. Good luck
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Thanks for the encouragement Daniella!
I felt great the evening after my first T/H and most of today. Went to work and got a lot done. Then got a wave of nausea and chills, popped a Zofran and went home and hid under the covers for an hour. Now I feel fine again. Strange to have my body feel so unpredictable, but so far it's quite do-able. My scalp feels weird and tingly too - I'm either imagining it or my hair follicles are starting to complain. Glad my scarves arrived today!
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TTfan.... thanks for sharing.... Are you taking biotene? I met with my dermatologist today. Wanted to know what to stay with and what to change. She recommended biotene (5 mg twice daily to support nails/hair/etc.) Worth noting - her mom had HER2+ BC and is doing great 5 years later. She was very familiar with taxol and herceptin. My port surgery in the morning. Will know more late next week. Ist chemo 12/16 or 12/23. (Assumption is it will be within the ATEMPT trial..) Maggie
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hi Maggie - I'm guessing you mean biotin? No, I don't take that, thankfully I have always had very healthy nails and hair and haven't read anything that made me think biotin would slow or prevent chemo changes. Certainly doesn't seem like it would hurt though. Biotene is the brand of several products for dry mouth which I seem to have already gotten. So far I have only tried the spray which does help for a little while. I'm indulging in sugar free life saver candy for both the dryness and the weird taste in my mouth.
I got another wave of fatigue and nausea this PM, but again the Zofran helped. Nothing too bad but I'm trying to listen to my body and not just do my usual toughing it out routine. My chemo teach nurse was very insistent about that, so I'm trying to follow her advice.
I wish you smooth sailing with your port placement tomorrow! Let us know how it goes. My port appt isn't til the 12th. I also wish you peace and patience as you wait on the trial info. I know how very hard the unknown was for me! I did decide to stick with the trial even though I'm in the T/H arm.
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Hi everyone-had my week 7 Taxol and Herceptin yesterday. Scared me because they delayed infusions to check me for shingles! Ladies, I have so many different rashes all over me I can't keep up with it. Follicular rash on the scalp and legs, welts on my back and an awful mess on my hands. They say the culprit is Taxol. But they ruled out shingles. Well, tomorrow they start pumping prednisone into me-no sleep!- and hope it works. 5 to go. It is getting tougher and I gained 3 pounds in 6 days. Had nausea for the first time this weekend and took Zofran-it works! Nose is bleeding all the time.. But blood counts still ok. I just want to reach #12 by 1/8/15
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I took biotin, zinc and silica for my hair. I also did the cold caps and didn't lose my hair. Be careful with any combination multi vitamin for hair skin and nails because some contain soy - a phyto estrogen. I used latisse throughout and never lost eyelashes or brows but that may still happen. A few ladies on the taxol weekly thread had success in maintaining their's with latisse, so praying for the best.
The biotene works well but is expensive. I found rinsing my mouth with a little salt water and baking soda a few times a day really helped with that dry nasty mouth feeling.
Someone mentioned edema. I had mild edema which I didn't notice until my rings started feeling tight around week 9. I gained 7lbs even though I wasn't eating much - well, I was pretty much eating carbs so that could also have contributed. I was convinced it was water retention. Sure enough, around 10 days after chemo finished, urinated about 5 lbs of water over two days. I drank lemon water to help. Got weighed yesterday at radiology and I'm down 8lbs. So yes, edema.
Since this treatment is sure to become the standard of care for women with our diagnosis, I feel it's important to keep this thread active. Thanks to all our ladies who contributed from the Dana Farber study to remind us that this is the most effective course. I will keep commenting as should all of us with something to contribute to bump this thread up! I feel sorry for the women that keep getting blasted with harsher treatment that are not given the option or are unaware of T/H. Of course some choose to get blasted believing it will be more effective- to each their way but the options should be known.
I'm also only getting 4 weeks of accelerated radiation which is the standard in Canada - for obvious cost related issues. However, Sloan has studied the effectiveness of 4 vs 6 weeks, the standard US, and found it to be as effective. There's are minimal possible cosmetic SEs but my radiologist assured me he hasn't seen anything to be concerned with- a little scar tissue if any. Nothing noticeable. I had the choice and that is what Is important. After my own research I chose 4 weeks as it will most likely be the new standard, too. IT may not be for everyone but we need choices
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For the new ladies, this is me one week post chemo on Thanksgiving. My face is still puffy from the water retention and of course with no blow drying, my hair is on the flat side. But all in all, not so bad for a girl that just finished chemo. I hope this inspires you ladies just starting. I was a little tired that day, a little wobbly in my heels, but my family saw me, not a cancer patient and we all enjoyed the day. You can do it - and moreover, the NED rate is 98.3%+! Have faith. May you all have minimal SEs and be "cured" forever.
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April8 I had the rashes on my hand , arms and face I have very sensitive skin the steroid cream they gave me caused my skin to flake off. Was gross but cleaning off in the shower with a soft cloth made it feel better. The attending doctor suggested over the counter Cerave and Cetaphill moisturizing lotion and it really helped. Taxol seems to dry everything and MO said it also affects mucous membranes so lots of fluids. I am feeling better 6 weeks since taxol but never finished treatments too many SE's. I also went to ENT to have nose cauterized since I am prone to nose bleeds helped with the nostril they where able to do have to go back for other .
DaniellaD congrats on finishing the taxol. Your right about the baking soda and water helped with the dry mouth.
Had my herceptin only treatment on Thursday so far so good MO is giving me weekly doses to see how and if any SE's bother me, since I had so many issues with taxol.Also starting radiation so need to be at center every week any way. Radiation treament will be on my stomach which is a little uncomfortable but can deal with it not on the table long when I get zapped just when they did the mapping.
Hang in everyone take it one day at a time!
Kathi
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Daniella - What a lovely picture of you and your little precious one! She is a real cutie pie!!!
I check this tread occasionally to see if I can put my 2 cents in and to make sure everyone is doing fine. You didn't lose your hair - how wonderful is that!!! I would have done cold caps, but I'm always cold. I couldn't imagine putting a cold cap on my head!!! LOL My hair is growing and filling in nicely - salt and pepper. I'm not going to be a slave to the beauty parlor anymore - no more coloring for me. Those who see me without the wig tell me it looks really good. I may, for Christmas, chuck the wig! I'm ready to go topless! LOL
April - I had rashes - on my legs, arms and hands. I was told it was from the steroid. I had the steroid lowered. The Dermatologist oncol gave me creams for each one of these rashes because they call came at different times. The creams do work. I must have a collection of 6 different kinds of creams. As long as they all work, I would fill those scripts. You will get to treatment #12! It seems like it's light-years away, but it comes and then it is over! You will be on to your next journey - radiation which is not bad at all - only a new set of creams LOL.
On Christmas, I will be 4 months since my last taxol. So ladies, hang in there! You will be checking this tread like me and encouraging all of the ones before you to keep the faith.
Wishing you all a blessed Holiday season - no SE's and to stay positive because you will get through this journey!
Love and (((Hugs)))
Marie
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Hi all,
I had my first post diagnosis mammogram yesterday and every thing was good! They have 3D mammo machines and I got to see my films. Very interesting the way they look compared to the 'old' pictures. Now I feel like I am cured.
Still on Herceptin until mid March.
When I think back to my diagnosis in Jan. I have come so far. Many times I felt weak but I found a strength, too. You all helped me get through the tough times. Thank you.
Dee
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Daniella, your daughter is adorable and you look great! I am glad you can do the shortened radiation protocol. I asked about it and my rad onc said that the studies had not been done on HER2+ people so she wasn't willing to do that program for me. That was almost two years ago though. I had no problems at all with radiation - my skin barely even turned pink. It's just the annoyance of having to go every day.
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Yayyy Dee!! So happy for you!
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Dee,
That is wonderful news! I remember when I first found this thread - You were 3 months ahead of me and in my age category. You were an inspiration to me and still are!
Have a wonderful Holiday and a Happy, "Healthy" New Year!
(((Hugs)))
Marie
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hi daniella
What is cold caps where do you get them from
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Thanks everyone. I'm still tired but happy overall with being done.
Shayne, cold caps are cryotherapy claps worn before and during chemo. They are frozen to -32C and changed every 30 minutes. The idea is that the coldness will shrink the scalp hair follicles so they don't absorb the chemo. It is laborious doing it weekly and exepnsive but worth it for me. Check out the cold cap thread for more information or inbox me. I used Penguin Cold Caps and kept all of my hair - as did a few other ladies with this regimen.
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April8, I am also covered in a rash. Mine is now just all over my face and itches bad, it was on my scalp and arms too, but I got that cleared up with antibiotics. I see a dermatologist tomorrow.
I need help girls. Sex hurts because I am SO dry down there, but I don't want to tell my hubby no more sex. Please help. We have tried different lubes with no luck so far. I still have 4 weekly sessions left. I must find something to help.
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Great news Dee! You are always an inspiration. Marie, thank you for always provided such wonderful support and information, too. I hope the neuropathy is easing up. You both, along with all the wonderful ladies on this thread have been so very helpful.
Kerensa- bless your heart for even trying to have sex. Not only do I still not feel in the mood, I can't imagine there is enough lube in the world to make it comfortable. Good luck. Maybe there is a thread with advice
I had my first herceptin only treatment today and have had an awful headache since. A little nausea, too which my nurse suggested was psychosomatic. Lol. Anyone else?
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Daniella - did they run your Herceptin over a half hour? There are several ladies on the Triple Positive thread who said they had side effects like yours when they started Herceptin only, and when they asked the nurse to run it over 90 minutes instead of 30 there were no side effects. So - ask them to run it over 90 minutes next time and see if that helps. After all, it is triple the amount you were getting on a weekly basis, and it makes sense to increase the run time.
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PatinMN,
No, I let them run it in 30 minutes because I had already waited for three hours to get a chair. I'll remeber for next time. Thank you again Pat. You are always so helpful. If not for you, I would have never pushed for this course of treatment. I read the study but it was your posts and emails that convinced me this was the right choice for me. I am forever in your debt. I was able to do treatment, take care of my baby and keep my dignity because I followed your lead. You are always in my prayers, as are all of you wonderful ladies.
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Two years ago I had Stage 4 inoperable breast cancer with HER 2 POS cancer. I had done macrobiotics lifestyle for nearly two years, my body became much healthier, however the tumor increased and a spot on my sternum developed. I prescribed Taxol for 12 weeks at a reduced dose and actually stopped before 12 weeks. I did Herceptin for 1 year. I requested a "free circulating tumor cell" study and PET scan to confirm the absence of cancer activity. All negative. At the 11th month of Herceptin I could feel the spot on my sternum reactivated. I chose to find another way to address this as the Oncologist had no options I was interest in putting myself through, knowing the outcome would not be healing. I worked with an energy therapist using Radionics and it cleared the cancer and precancerous cells. I continue to occasionally use her services for tune ups. I am now healthier than I have ever been and encourage everyone to be open minded, look for options that resonate with you as healing and be positive.
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Finished #12 Taxol/Herceptin today! 😃 Yay!!
They gave me a triple dose of the Herceptin because I won't be going back now for infusions of Herceptin only for three weeks. I am sooooooo glad to be done with the Taxol! I had S//E's of: nausea, hot sweats, thinning hair, diarrhea, joint/muscle pain, big toenail black, but the most troubling is the blood clots. Aside from the clots it was very doable eating small snacks and taking Immodium. The clots are due to my port so I am on Xarelto blood thinner. Last week they gave me a CT scan and said the clot in my jugular is on the nerve and blocking the flow. Said we will watch it for a couple weeks, may have to have a meeting with a vascular surgeon. Bummer..
Friday I meet with the Radiologist. A week after I had my lumpectomy I fell down a hill and ripped off my left shoulder. I had it replaced with a reverse titanium shoulder. Problem is I am looking for a prone position with partial breast radiation but I cannot put my arm over my head! Will find out what my options are Friday.
Hope everyone is having very minor S/E's so you can enjoy yourselves this season!
Wishing you a Happy Holiday and a Wonderful HEALTHY New Year!🎉
Nancy
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Yay Nancy! I'm going for #3 T/H tomorrow. Congrats on being done with the Taxol! Good luck with the clots and finding a good RT position!
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Congrats Nancy!! I'm right there with you!
I finished #12 on Monday. So glad to get through this part. I go Friday for an echocardiogram, and start the Herceptin only this next Monday. I have an appt on Dec 30 to get the radiation set up. I too had similar SE's: dry nose, hot sweats, thinning hair, diarrhea, and fatigue. My toes and fingernails are tingly and kind of hurt. Its like my toes fell asleep and wont wake up. My hair thinned enough that I needed to shave it but I didn't lose it all. I still have some fuzz on my head and I kept most of my eyebrows and eyelashes. I swear only the gray hairs stayed. The fatigue is the worst right now, I get tired really easy and my motivation to do much is really lacking. I know it will take a few weeks to feel better but I'm anxious to be past this...
For those that are just starting out hang in there. its just one of those things we just have to get through.. Just take one day at time.
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Nancy and myturn -yeah! So happy you're done. It's a month since my last chemo and I still feel pretty tired. Some days feel like I had chemo only a few days ago with all the SEs. Herceptin is not SE free for me. Hope you fair better. I felt better during chemo! Lol. It will get better, I'm sure.
Here 4 U - thanks for the info!
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Thanks TTfan and Daniella! Myturn-Congratulation to you also! I wish the rest of this so called "journey" was over!
Today I went for my Radiation consult. Not what I was hoping for. I was looking for the 4 week prone partial breast setup and was only offered the 6-1/2 week full breast supine position. So 33 rads and 5 boosts. My shoulder caused me to lose the prone position, but the full amount of rads she told me were in my best interest for non-recurrence. She said if the bc returned it is automatic mastectomy. The nurse said the most I should expect is a pink glow, in rare cases people got red like a sunburn. The doctor meanwhile said that I would BLISTER and she would discuss medication and treatment for that at a later date! She said everyone has a part of their lung hit and she would try very hard to avoid my heart. Real encouraging.0 -
Daniella, are you having nausea with Herceptin, by any chance? I felt a little barfy on day three after my last infusion and I am wondering if it was related. I can't find much info about Herceptin causing nausea.
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