Taxol and Herceptin only for stage 1 HER 2 positive?
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specialk, thanks. That makes sense since I have gotten headaches after each anesthesia and surgical procedure. I also took Zofran a couple of times after chemo to ward off feelings of nausea. I hope you are healing and feeling well!
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sandyloveslucy - I am long out from chemo so I am good there - having some surgical complications, but no worries. I am currently half-reconstructed and half-flat and will go in Oct. for another try at expander/implant on the left, but I am doing just fine - thanks for the good thoughts! They always try to give me Zofran prior to surgery in the IV, it not only gives me a wicked headache, it does not control nausea for me. I know that for a lot of others it does control nausea, but does cause the headache. If you need more surgery you could ask for another anti-nausea drug and see if it makes a difference.
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Thanks again, SpecialK!
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Good morning all,
I'm starting taxol/herceptin 12x weekly for stage 1tc on September 3rd. Looking for some advice as to SEs and how to remedy. I am going to use the cold caps and understand that taxol only chemo cappers do very well. I started taking b6 and L-Glutamine already. Do I need to ice fingers and toes also to ward off neuropathy and nail issues? Mouth sores? Any advice or input would be greatly appreciated. I know this was a relatively uncommon treatment for stage 1 but since the Dana Farber study results many more oncologists are considering this to be a very good regimen. So expect there are more of us receiving th tx than a few years ago. Thanks!
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Hi Daniella,
Welcome to the forum. As you probably know already, we can all be slightly different when it comes to se's.
Hope this helps....
My experience was/is: The weekend before I was beginning the weekly treatment, I went to my beautician and got a short pixie. I started shedding my hair around treatment #4 and it was a little more aggressive from then on. I bought a wig for just in case. Now I won't go out without it. That was around treatment #8. I have very mild neuropathy in my feet and hands. From the beginning, I have been taking vitamin B6. I developed a numbing sensation on the top of my head which they say is probably from loosing my hair. I also have numbing on my lips and around my face. This is rare. They believe it is from the taxol. I was checked out neurologically and an CT scan & MRI of the brain were negative. My MO was concerned if I had a mini stroke. Thank God, all was well. I will be seeing a neurologist at MSK in mid September (Memorial Sloan Kettering where I get treated). I developed a non itchy rash on my legs which went away in a few weeks with a cream that the Dermatologist gave me. Then I developed an itchy rash on my hand which is also going away with another type of cream. They believe that came from the steroid (pre-med). The benedryl was started at 50 mgs.. Around treatment #3, I asked my MO if she could lower it. It was making me too drowsy. She did lower it to 25 mgs which is much better. They started me on the steroid 10 mgs and around treatment #10, I was lowered to 8 mg, then 6 mgs and for the last 2 treatments, I am at 4 mgs.
All in all, taxol is accumulated, but very doable. I get my treatments on Monday. So Tuesday and Wednesdays were my energy days. Thursday, the steroid was wearing off and it was time to slow down a bit. Friday, Saturday and Sunday were getting back to a somewhat normal feel. I drink about 8 to 10 glasses of water a day (to flush the toxins out). I also walk on my treadmill everyday for 30 minutes. I think this does help. I never had fatigue (maybe slightly because I am at the end) or nausea. Slight muscle ache probably starting around treatment 6 for a few days.
I hope this helps. Please remember, everyone is different.
Share and learn from us. Let us know how you are doing.
Good luck!
Mary
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Hi and welcome Daniella,
I've had two TH treatments so far so I'm just a bit ahead of you. I had my port placed the same day I started chemo, so it was difficult to determine which of the side effects I experienced came from surgery/anesthesia and which came from TH. I had a serious headache and flu-like body aches. This week has been a bit easier. Day two has been my good, full of energy, day (thank you steroids). I start to feel a little more fatigue on day three and four. I don't have as many body aches this week, and only a slight headache which I'm told can be related to the Zofran they give for nausea. I do have a bit of a "fuzzy" feeling in my hands and toes, just a little tingling. I am also taking the B6 and L-Glutamine in hopes of avoiding full blown neuropathy. I have a slightly drippy nose which I've heard can be related to the Herceptin. So far the side effects have been very manageable. I'm with Mary about drinking lots of water and getting daily exercise. I'm walking everyday, too, and find it helps both body and mind. Also getting lots of rest. I am working a few days a week and hope to increase my schedule a bit if things continue to go this well. My MO said maybe I would get away with just hair thinning but my chemo nurse and most people I've talked to on this combination have lost enough hair that they have chosen to get a wig. I do have mine for when I need it. That is just my experience and things may differ for you. I'm sending lots of good wishes to you as you begin your treatment. Keep checking in here!
Sandy
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Thank you ladies for your helpful advice. I'm also being treated at MSK in Basking Ridge. Has anyone fasted before and after to minimize SEs? I read a study being done whereby fasting 48 hours before and 24 hours after helps with SEs and chemo effectiveness.
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Daniella,
I have a friend who went through chemo 30 years ago. He told me not to eat at least 4-5 hours before chemo. For me, I would not want to have the meds on an empty stomach. I eat before and after. BTW, he was cured of Hodgkins Lymphoma at MSK. My other friend who is a 12 year bc survivor told me she ate before and after. She also told me that I would feel so well that I will wonder if the drug is working and she was on stronger meds than TH. Everyone is so different. For me, I think the se's are more of an annoyance.
I'm sure others will chime in on their experience.
Hugs and good luck on your first treatment!
Mary
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Since I'm doing weekly, I don't think I can nit eat for that many days. One women who is also doing weekly taxol (no herceptin) said she fasted 36 hours before and 12 hours after. The research says it's integral to the fast to continue 24 hours after chemo. I am just wondering if it's a good idea to do it with my first round next week.
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The steroids also impact the way you will feel around Taxol. I was sometimes very hungry (even through my taste buds were messed up), so I cannot imagine not having been able to eat the next day. I would definitely consult the docs before going with that type of regimen. Good luck!!
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My TH weekly infusions were during lunch time so I ate while sitting in the chair. I think you have to eat to keep your strength up and protect your stomach. I didn't have any nausea. They know a lot more now than 30 years ago.
Dee
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Haven't checked into this thread for a few months, but happy to hear that all are "progressing" well. Thanks again, Michelle, for starting this post & always adding your words of encouragement! It sounds like there are a number of us who live in the Boston area and have received treatment downtown at either Mass General or Dana Farber. (I was part of the original trial of 406 women back in 2009...recently passed the 5+ yr. mark.) Thank God for herceptin!! I know that last December, the results were published from that initial study: the 3 year, disease-free survival (DFS) rate was 98.7%, and the three-year, recurrance-free interval was 99.2%. My oncologist tells me it would be very "rare" at this point to have a recurrance. Wishing you all "the best of health"!!
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Yes, I had the same experience as Dee. My weekly Monday infusions lasted till about 11:30. They always brought a food cart around at Mass General, at that time. I was usually looking forward to the chicken salad sandwich by then!! LOL
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codi, it is great to read your post. So glad to hear that you passed that 5 year mark and are doing well. I'm grateful to be able to be on this protocol because of that study. Thank you for being part of it! I'm West of Boston and am treated at a Mass General Cancer Center not far from my home. I'm very happy there but no one is coming around with chicken salad! Now I'm craving it.
I've heard people talking about fasting before and after treatment. My blood counts are ok but on the low side of normal so I'm really concentrating on eating good nutritious foods everyday. I haven't had any nausea to speak of.
Thank you all for this thread. I'm coming up on my 4th TH treatment. I've learned so much and gotten great encouragement from all of you. It has helped me know what to expect and manage the SE's I've had. I've been finding it very manageable so far. My hair is hanging in there but I'm betting after #4 it will start to go!
Hugs,
Sandy
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Codi10 - that is awesome! That just made my day. I'm glad I read the studies beforehand and went with this protocol. I start next Wednesday.
My blood counts are good. I reached out to the Dr. Longo on fasting with weekly treatment. Of course he's not an oncologist but there are many new studies supporting his study on short term fasting and chemo. He suggested 48 hours before and 24 hours after. I'm shooting for 36 hours before - I'm not a martyr. I don't think I can stand a full 48 hours before. I know one other woman on weekly taxol who has fasted with great success. When she didn't fast, she had some SEs - headaches nausea and bone pain. So I'll let you know how I make out.
Sandyloveslucy - praying treatment 4 goes well.
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codi10,
I was part of the original study at Dana Farber, beginning in 2008. It's been six years since I was treated and I'm doing well, apart from problems with permanent neuropathy. (Sorry, ladies--this does happen to a small percentage of patients. Be sure to let your doctors know if you feel numbness early in treatment--and insist they take it seriously.)
One of my favorite parts of treatment days was when the very elderly ladies wrangling the lunch cart would come around. The lunches were bland, but the ladies were lovely, and very entertaining.
Happy to hear you're doing well. Best wishes to all of you starting and in the midst of treatment. Try to remember it's just one year out of your life!
Good health and happy Labor Day to all.
Ann
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Hi All,
I'm one of those who is dealing with neuropathy. Although my last taxol treatment was not even a week away. I'm hoping it goes away completely as I get further from my last taxol infusion. I have it in my feet, hands & face. I'll be seeing a neurologist in mid-Sept. I heard that physical therapy is a great help. I also heard acupuncture is good too. I'll see what the neurologist recommends. I'll try anything, but first I'll give it some time. I read on this tread that one of the ladies said 90% of hers is gone. That was uplifting! I'm dealing with another rash on my arm. I have a cream for that. Since taxol is accumulative, I think if anyone is to get se's, it would probably be toward the end of treatment. Drinking tons of water, keeping active (walking) and eating well will help with all areas of se's.
Happy and SE-free Labor Day Weekend!
Hugs
Mary
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Mary,
I think in the majority of cases it does resolve. You're right to give it some time. I tried acupuncture (at Dana Farber), and while it was extremely relaxing and soothing, it didn't have any impact on the numbness in my feet.
Good luck, breathe deep, and stay in touch--there are threads on this site for women dealing with neuropathy. But keep in mind it may not come to that!
Ann
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I just picked up my prescriptions for tomorrow. My doctor prescribed 20 mgs of steroid to be taken 10 hours before and then 20mgs taken 4 hours before. Two questions - is that a normal dosage? It seems really really high. Second, since my infusion starts at 11, should I be getting up at 1 am to take the first dose?
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I was started on 10 mgs of steroid, but it was given as an infusion before my taxol/herceptin. In time, my MO lowered me down to 8 mgs, then 6, then 4 at the end.
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Hello All,
I am new to this board. Doing pretty good. Have my 3rd chemo tomorrow. So far I have been fatigued during my first week after chemo, have the nausea under control. Definitely a battle! Wish you all the best with your treatments!
I was diagnosed with Stage 1 Her2 positive. Triple positive
I had a lumpectomy and removal of sentinel node which was clean. All my tumor markers are clean as well.
I have third round of chemo tomorrow- Taxotere, Carboplatin, Herceptin. ( TCH) Chemo once every three weeks.
I have 3 more to go. Last chemo Nov 6th. After Chemo, I will have Herceptin once every three weeks until July next year. I will also have radiation. I also get a Nulesta shot after each chemo ( the next day)
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Hi All,
Had my Herceptin only infusion yesterday. Did it in 1/2 hour
. I was a little nervous, but it really went well. Simulation was last Thursday and the re-check will be this coming week. I will probably get my radiation schedule at next weeks appointment. Yesterday, I had my echo cardiogram and met with my MO. Everything was good to go. The only thing was that the bottom half of my breast appeared pinkish again. She put me on antibiotics and wants it gone before radiation begins. I also complained that I feel a bloated feeling in between my rib cage. It feels like a bump. Has anyone else experienced this?? She put me on a generic prescription of Zantac. She feels it is acid reflux. So far, it hasn't gone away. She also told me to take Miralax to help with constipation.
I am happy to report that my forearm rash looks like it is finally going away. I am still experiencing neuropathy in my hands, feet and face. It isn't painful, just tingling, numbing and annoying.
Hope everyone is feeling good and enjoying the official end of summer!
Hugs
Mary
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Sheila - sort of sounds like my diagnosis. I, and the women on this forum are her2 neu, stage 1 being treated with taxol and herceptin weekly. There is another thread for women receiving your treatment that may be more helpful to you. Hope this is helpful and glad to hear you're getting through treatment well!
Mary- I was ruined from all the steroids. I even took an Ativan a few hours after the last dose because I was just jumping out of my skin. Doctor said if everything goes well, we will only do IV steroids during premeds. Yeah!
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Only side effects from first infusion - a little fatigue and last night I had a headache. I think the fasting helped. Eleven more to go, so we will see. Hope everyone is well!
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Hi ladies,
Mary, I hope the antibiotics do their job for you and I'm glad that the rash is resolving. I've had a little of that feeling you describe in between the rib cage and it does feel like acid reflux I've had in the past. Zantac usually does the trick. You're ahead of me in this process and I appreciate your sharing what it has been like for you. When did the neuropathy start? I've had a tiny bit of tingling in my toes and kind of a "fuzzy" feeling in my fingers, but no real numbness.
Daniella, congratulations on getting through #1! I had a very bad headache the first time, may have been from the Zofran in my pre-meds, but the last few weeks haven't been as bad. I only get steroids in my pre-meds on treatment day. Good luck with the fasting, hope it works for you!
I got through #4 just fine and the side effects have been mild. I am taking meds for oral thrush. Day 3 and 4 seem have been the days I'm most fatigued. My hair just started falling out the day after #4. I have thick hair so although I have lost a lot, my head is still covered. We'll see what the next couple of weeks bring. I'm grateful to be feeling as well as I do today!
Hope you are having a good weekend and fine time to do something you really enjoy! Hugs to all.
Sandy
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Neuropathy didn't start in my hands or feet. It started with a numbing sensation around my mouth around treatment #9 which I thought was from a cream the dermatologist gave me. Around treatment #10, it was around my face & lips and tips of my fingers. After #11, the tingling started in my feet.
Monday, I will be 2 weeks away from taxol and the rash on my arm is gone - hooray! So I now have no rashes to speak of! Knock on wood!!!
I can also say that today, I didn't feel the fullness feeling in between my ribs. This may be going away too.
Now all I need is for the neuropathy and the pinkish color on the bottom half of my breast to go away.
Hugs
Mary
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Mary, thanks. Now I remember you posting about the numbness around your mouth. I hope that starts to go away soon for you. I know the results of Taxol can accumulate over the course of treatment but am trying to stay hopeful. I'm so glad to hear your rashes are better and that your echo was ok!
My parents are coming for lunch today. I haven't seen them for a few weeks. They are so worried about me that it is good for them to see me still looking like me. Although I am 63, I'm still their "baby!"
Have a great day,
Sandy
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Mary - happy that nasty rash is resolving. Hope all your residual SEs go away and you're feeling better everyday!
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Sandy - Have a great time today with your parents! I remember my grandmother when my father used to visit her. He was in his 60's. She would be sitting with her friends and she would call out "My baby is here!". It was so cute. I tell my children, they will always be my babies. You will look fine throughout treatment. I live in a high rise building. I only told my 1 neighbor on my floor. No one suspects that I was on chemo. I did get a great wig (insurance paid). Even the people at the treatment center said to me "At least you didn't lose your hair." I would tell them that it was a wig. They couldn't believe it. I also have a bandana, but I don't go out with a bandana. I only wear it if someone comes over and knows about the bc. I can't stand wearing the wig, but I only wear it if I go out.
Taxol and Herceptin is very doable. Let's face it, we do what we have to do to put this behind us. Everyone is different and you can't go by what others experience. I can say to drink plenty of water and exercise. I think walking on my treadmill kept the fatigue at bay. Just 30 minutes a day and no need to go fast. The water will flush the toxins out. Every time I went to tinkle, I just thought the toxins are coming out lol. It also is good for your kidneys. You will be fine!
Daniella - Are you at MSK in Basking Ridge? I think the steroids in the premeds are probably a better idea. As they see you are tolerating the taxol well, they will reduce it. In the premed, I started at 10 mgs. What a great relief that the rash is gone. See, there is light at the end of the tunnel!
Hugs
Mary
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Mary - yes, I'm at MSK in Basking Ridge. I'm only getting steroids in my premeds. I hope it works out well. I had a lovely group of pimples on my chin that I suspect were from the steroids. I guess I'll feel more fatigued this time being the 2nd treatment and now, no extra steroids. Walking everyday and lots of water. I can't jog bc I'm too afraid of my head getting too hot (I'm cold capping). I'm doing yoga via YouTube, too. They have some good videos - perfect for any level. I hate yoga usually and am very flexible so I just stick to the beginner videos. Thank you for reminding me of the light at the end of what seems to be a very long tunnel. Xo
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