Taxol and Herceptin only for stage 1 HER 2 positive?
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Thanks PatinMN for the information. I am glad your neuropathy is now gone! am so hoping to get out of this without permanent neuropathy. I will check with my MO about acetyl l-carnitine.
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hgallant: My friend also has numb and tingling at #9 infusion (She is doing TH). She is fully recovered now. My MO told me that as long as it doesn't start at the beginning of chemo, usually it is reversible. Another doctor told me to have warm bath (salty water) for hands and feet to improve the circulation and message afterward. I also have the mild tingling since infusion #5, it comes and goes, now I am at infusion#7.
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Hgallant,
My neuropathy started around my mouth I think around my 8th treatment of TH. It later progressed to areas around my face (rare but it happens). Then I got the tingling in my fingertips and the balls of my feet. I saw a neurologist oncologist and he said it takes "time". Mine is the side effect of taxol. Some side effects go away right after you stop chemo and others take time - such as neuropathy. Not everyone gets the same side effects. I don't have any pain associated with the neuropathy, only numbness. It's been over 7 months since my last dose of chemo and I can say I do notice some improvement. I never missed a treatment. I took vitamin B6 throughout my chemo. Then my MO said I could stop taking the B6, but my Internist said to take 50 mgs of vitamin B6 because it does help with nerve damage.
Good luck! Soon you will be over with this part of the journey!! Radiation is a breeze and so is Herceptin only. At least it is for me
I'm sure it will be for you too.....((Hugs))
Marie
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My 72 year old mom has finished 7 out of 12 treatments of Taxol and Herceptin. The taxol has hit her really hard the last week or two. She has just about all side effects and is pretty weak. Her dr isn't sure she will be able to finish the Taxol for 12 weeks. She cried when the dr told her this, and I know she wants to finish them, but I'm concerned about how this is affecting her body, too. I understand the treatment plan normally is 12 weeks and research studies show this has good results. Anybody know about research for less amounts of Taxol? How did 12 become the magic number? Anybody else not finish the 12 cycles?
I tried to search threads about this but didn't have much luck. I apologize if this has been discussed before. I started a new thread on Her 2 forum, but thought somebody might have a comment here, too. Good luck to all the beautiful ladies here!
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MarieNJ: Nice to see you doing great and dropping by to encourage us.
Findmewdw: I am sorry that your mom has suffered SEs at infusion #7. I remembered DeeC is also 72 years old and she has to take one week break after infusion#7 due to the side effect. I think that 12 number is based on 4x3 ( in well established TCH regimen the infusion is done every 3 weeks for 4~6 times). Maybe MO can lower taxol dosage to reduce the SEs. Good Luck to your mom, I know that it is hard to go through the whole chemo especially near the end, your mom has done a terrific job
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Hi ladies... Just wanted to stop in and let you ladies know what I have discovered after being done with herceptin. I had my last one on March 2nd. The whole time I was getting just the herceptin the only side effects I noticed was the runny nose and weak fingernails. I have been off it for 6 weeks now and about 3 weeks ago I noticed that I have a ton of energy all of a sudden. I am breezing through my workouts, have a little pep in my step and feel energetic and on top of my game. It is so weird. I started wondering if it could be from stopping the herceptin because I haven't changed anything else. I had a follow up appt with my onco yesterday who asked me specifically if I had noticed feeling different now that the herceptin is done. I told him what I just said here and he said he has heard that before from other patients. Mostly the younger ones. (I am 47). He went on to say that there are HER 2 receptors on several other body organs and that even though it appears to be pretty non-toxic as far as side effects go during treatment, it doesn't surprise him that some people report feeling great once they stop treatment. I am curious to know if any of you who are done with treatment have experienced the same thing? Oh....my runny nose is way better! Nails are still weak. Good luck to alll of you who are still in treatment. : ) There really is a light at the end of the tunnel!
Michelle
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Hi ladies!
I had herceptin infusion Wednesday and I swear someone in the pharmacy messed up and gave me chemo instead. I feel awful since infusion, like how I felt after chemo. Very fatigued, achy, digestive issues, headache - but like how you feel after week 6 of chemo. I can't say that I've felt great on herceptin. I have fatigue all the time, like my body is heavy. I feel very weak still but that could be from chemo even though it's been 5 months PFC. Weak nails and runny nose...check! @Michelle, maybe your doctor Is right. My dr refuses to believe my SEs are connected to herceptin. So frustrating.
Hope everyone is doing well.
Xo - Daniella
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I had neuropathy in my toes and also around my mouth and nose. I'm 7 months PFC and its almost completely gone, just some leftover tingles that come and go. I still take B6.
I have one more herceptin only to go. I'm so happy to here that I may get some more energy back when this is all done.
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I am on week 6 (halfway!) of taxol/herceptin and haven't had any neuropathy, just sort of a weird feeling in a couple fingers here and there. When did neuropathy start for you guys who ended up with it? I am taking glutamine and B-6 and crossing my fingers.
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Hi Ladies,
The end of Herceptin for me will be the beginning of June. My nails are weak too, but I found that getting a regular manicure and bringing my own "Nailtiques" is helping very much. The manicurist puts it on as an undercoat and overcoat. My nose runs sometimes. I am dealing with uti for the 2nd time in 3 months, but I don't think it is associated with Herceptin, but who knows.
Did anyone's hair grow back with chemo curls? Mine did. I read online to keep trimming your hair because your hair's texture may grow in different and it could take 1 year before chemo is essentially out of our system. I just got the 3rd cut and it looks so much better without those curls! Someone also said somewhere on this site that our hair grows slowly while we are still on Herceptin and once we are off it will grow quickly.
Michele, I'm so happy your energy is top notch. I'm feeling good for 63 and it's encouraging that I may feel even better!
Debbiann, I too have neuropathy and it seems to be improving slowly, but at least it is improving.
Daniella, I'm sorry to hear you are going through these se's. You could still be feeling the se's from the chemo even though you stopped. Make sure you continue to drink plenty of water. The chemo is active in your system 3 months after you have finished and inactive for 6 months. Now I hear that it could be inactive for up to 1 year. - ugh. Drink plenty of water to get these toxins out! Feel better.
Colleen, I think I read they stopped the Herceptin for Dee before the 1 year because she was actually too fatigued. I believe she had other issues not related to bc. If I remember correctly it may have been chronic fatigue syndrome. Good luck to your Mom and hopefully she will be able to finish. She has to drink plenty of water! I know I keep pushing the water, but it's the only way to flush the toxins out. I drank 10 glasses of water a day to pee it out!
(((Hugs)))
Marie
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Hi everyone,
I started my treatment journey on 9/11/14, I have never been one to let a date defer my life maybe I should of. This post is not to get anyone upset or afraid just a little awareness. I had terrible side effects from taxol and was only able to have 5 out of 12 treatments MO said it was ok since the mass was removed and we are concerned about the dust in my body. I took some time off and continued with herceptin weekly in December while I was getting radiation treatment which went well. I was on my stomach so not too much skin contact just a bit of skin flushing and soreness. February I stared on the 3 week herceptin schedule not too bad, nose bleeds continued but it was not as bad when on the taxol. Finally starting to feel like myself the end of March took a couple of days off to go to Atlantic City with my sister.It seemed like I had gotten a nasty bug when we got there spent 2 days in bed with fever, chills and horrible sweats. Went to GP maybe upper respiratory infection and pain in back was muscle probably from chills. Antibiotics and sent home next day went to ER pain in back was unbearable. Had a CT no pneumonia,blood clot and pain might be bone maybe some pain management Oh and will need to see your MO some suspicious mass on Ct next to surgical clips GULP! (Thankfully it was fine Mammo was negative and just scar tissue whew).Any way leaving had to re do a blood test heart enzymes where a little high test redone ok to leave numbers coming down. Home again pain killers and muscle relaxers. Ok took them slept on and off for 2 days then started getting light headed stopped the pills. Next day light head feeling worse woke up during the night asking myself why am I on the floor. Texted sister help me and she found me passed out on my bedroom floor which I now know was a heart blockage which means I was in heart failure. Wisked me off to ER had a temporary Pace maker placed and my heart and mitral valve are damaged. I did have heart issues before treatment so MO & RO had to be extra careful with my treatments. Thankfully my cardiologist had faith in my heart which has always been strong I have issues with arteries and he redid echo and heart and valves ok just as strong as last echo he did from November said it was a miracle.I still had to have the permanent pace maker placed since my heart still wasn't beating properly.I'm coming along now lymphedema in left arm but seems to be healing too not getting worse.
I'm sharing this to be careful if you do have any heart issues or feel any kind of light headness or funny feeling during or after treatment take care of it don't wait sayings it's from the chemo it might not be.Have a heart to heart with your MO/RO and make sure that they are aware of any issue you may have with your heart. Doctors are not saying that is was a direct result from the drugs but it didn't help,I feel I should have had more echos done by my M/O.
Sorry for the text book but I think everyone should be aware of a less talked about side effects of herceptin.
One day at a time sisters and brothers.
Kathi
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hello ladies!! I've completed 2 treatments so far. Seem's like I've experienced a lot of the side effects. Extreme fatigue, nausea, neuropathy. Not including, I can't eat, nothing sounds good to me. I usually force myself to eat. I'm small framed and don't need to loose much weight. Today my nails are hurting. It's to the point I can't get out of the bed for day's. I don't have a treatment this week (yay). Also, I'm receiving injections in my tissue expanders. I have two children to care for and it's hard!! Now I'm waiting for my hair to start falling out
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Justdiagnosedtoday - I just saw your post and hope you are feeling a little better! I was very lucky and breezed through the first several weeks of Taxol, didn't feel like you are describing until week 7 or 8. If you keep feeling that bad or worse, you may want to discuss a small Taxol dose reduction with your MO. I'd be mostly concerned about the neuropathy, the rest is uncomfortable but will pass. The neuropathy can be permanent or at least take a very long time (years) to go away so make sure they know exactly what you are feeling so they can adjust if needed. If you don't have an issue with it and have any access to medical marijuana, it works wonders on the inability to eat and nausea. I was losing a ridiculous amount of weight and was able to stabilize it with just a type of cannibis that doesn't make you high (called CBD) and can be eaten, I didn't want to smoke anything.
It's got to be really tough to care for kids while you feel so rotten - sure hope you are getting some help! The hair is annoying but seemed like the least of my worries. I had fun with hats and scarves and eventually just went with "boldly bald" when I was sick of having to match yet another part of my outfit! Big earrings help a lot too! This will pass - I am two and a half months since last Taxol, have an inch or more of hair and am feeling very close to normal, just a little lingering fatigue, and a little neuropathy in my fingertips and toes, but it is definitely improving even though veeeery slowly. You will get there - hang tough!
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I just finished 6 of 12 rounds of taxol. Every week is different. I'm always fatigue and exhausted the first couple of days after treatment. The nausea is horrible, the meds help with that. I've buzzed my hair short. I was tired of finding it everywhere. It's thinning more and more everyday. My mo prescribed me the marijuana pill but my insurance wouldn't approve it. I'm eating better. I loose about a pound a week. I'm already small framed. The neuropathy hasn't been too bad lately. I'm going thru reconstruction, the injections for that has been painful. I'm probably Just going to do one more that will be 500 cc I take one day at a time and pray!
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Good Morning Ladies,
I had my final triple dose of Herceptin last Monday! Yay!! For those of you who are starting, at midpoint or coming to the end of your journey, there is a light at the end of the tunnel. It really hasn't been so bad for me. The weekly treatments of TH went pretty quick. There were a few bumps in the road - like little rashes, hair loss, diarrhea etc..These are common, but they go away quickly w/medication the doctors prescribed and right after chemo ends. Always call you MO to report issues along the way. He/she may send you to a specialist who is familiar with chemo side effects. Towards the end, you may get neuropathy in your feet and hands. It's chemo induced. That will take longer to improve or go away - post chemo. On Herceptin only - for me it wasn't bad at all. Especially not having to go for an infusion for 3 weeks was a relief - and it took only 1/2 hour! and no pre-meds!
When I first started treatment, I had this one nurse each week. I got so used to her that when another nurse came in, my eyebrows rose. Well, during my journey, I had my favorite nurse occasionally. Bidding farewell was emotional, but I said I would rather see her/them on my way to my regular doctor visits or shopping at a mall! LOL - More like "Hope to see you NEVER!" LOL My MO said for the next 2 years I will see her every 4 months. My mammogram is once again on a yearly basis.
Currently, I am still dealing with some neuropathy on the balls of my feet which is not too big of a deal and neuropathy on my face. That annoys me the most. The only thing I take for it is vitamin B6 50 mgs. I still walk 30 minutes a day on my treadmill and drink at least 8 glasses of water a day. When I shop now, I look for more organic products especially fruits, veggies and chicken. Oh one more note, I don't color my hair anymore. I'm salt and pepper and happy not to be a slave to the beauty parlor. I keep it short and loving it! The only thing, it came in super thick and curly. I keep going to the beauty parlor to cut these chemo curls out! LOL
I wish you all a side effect "free" journey. The end of this journey is not too far away.
Enjoy the upcoming summer months - stay safe and Good Luck to all!
Love and (((Hugs)))
Marie
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Congratulations Marie and thanks for checking in! I hope to be able to post a similar story in November. Its always good to hear from people doing well further down the road!
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Thanks everyone for sharing your words of encouragement and positive endings to treatments. It helps so much to visualize myself there. I have completed 4 of my weekly T/H. Troubled most by diarrhea and a upper respiratory infection that has been lingering since the beginning. Cleared up a bit with an antibiotic and now returned again. I think I would feel pretty normal if not for that and some fatigue. I actually felt better this week post infusion since they did not give me Decadron. During the first 3 weeks, I became very fatigued and almost disoriented 2 days post infusion. They attributed that to the Decadron wearing off and decided to try without it. It was helpful. I had a more gradual fatigue and it lifted more quickly. I am taking Immodium for the diarrhea and just have to be careful about my food. Staying away from fruits and vegetables is difficult for me.
I am feeling more of a sadness/depression this week. 8 more weeks just seems so long! Going to try to exercise to lift my spirits. I think once I hit the halfway mark I will feel better too.
Hope everyone has a great day
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Hi Michelle, My story is similar. I was originally diagnosed with dcis stage 0, had a lumpectomy and was supposed to get straight radiation. Unfortunately it turned out that it was idc stage 1. Had a bilateral mastectomy in January of this year. I went through 12 weeks of taxol and herceptin and am now doing herceptin every 3 weeks. I don't think I am going to have radiation at this point. I ended up with nueropathy in my feet and hands and it's been 3 months since my last chemo treatment. No major side effects from the herceptin except a little nausea after the treatment. If you are having herceptin you need to have a MUGA test before and every 3 months. Thus far the results are good.
Best of luck to you.
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hey Kerryd - you must be close to done with the Taxol. How are you doing
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Hi Ttfan- I should be finished this week but due to a severe rash and neuropathy, my Taxol was held for 2 weeks. Symptoms resolved so the Taxol resumed last week. This week will be #10 and as long as I continue to tolerate- will be able to go to 12. I was feeling good during my break and am back in my Taxol funk again. Almost over!! How are you doing? I always like reading your posts and feel encouraged about closing in on the end of treatment.
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my wife was just diagnosed similar to you...she is thinking about the Taxol Herceptin combo. What did you end up doing? How are you
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Hi Raddoc,
Thanks for checking here and doing some research for your wife. Feel free to private message me. I'd be happy to talk with you and your wife. I am sorry for what you are going through now. I remember how difficult it was for us during the initial phase of diagnosis and waiting for treatment. I can assure you that it gets much better! My husband read a book called "The Breast Cancer Husband" and found it helpful and accurate.
I am doing very well at this point. I completed the Taxol, or I should say completed 9 out of the 12 planned infusions. I developed a rash and neuropathy which was significant enough to stop the treatment. My oncologist felt confident that I received enough benefit from the Taxol and the risk of worsening neuropathy was not worth the benefit of continuing. I was glad they stopped it because the neuropathy is difficult to manage. It is slowly improving though so I am encouraged that it will further resolve over time. I also completed radiation and now continue on Herceptin only for 6 more months. The Herceptin alone is absolutely fine. I don't notice any side effects.
Does your wife qualify for the TDM1 trial? There is a thread on the boards about that which I found very helpful. In the end I decided not to go through the trial. It was a difficult decision. I'd be happy to talk about that as well and give my perspective on why I chose the standard of Taxol/Herceptin. I will always wonder if I would have been better off to avoid the Taxol, but we can't go back. The ladies on the TDM1 trial would have great information to provide on that, they are very knowledgeable and supportive.
I hope you and your wife are encouraged by the availability of Herceptin. We are lucky to have this option of targeted therapy.
Wishing you all the best,
Kerry
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hey Kerry - hope you are recovering well from the Taxol and RT and cruising through Herceptin! I finally finished out the year and had my port removed. It feels a little unreal, but this whole year has felt a little that way! You too will get to the finish line! I also hope you feel good about your decision to go with T/H. I haven't seen anything yet to indicate that TDM-1 is getting any better results. Happy holidays
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Hello Friends,
My mom is in a situation not knowing which one would be better for her both in terms of limiting recurrence and decreased side effects. One doctor has advised TCH protocol and other has suggested T/H. Both the doctors are well-reputed. I am trying to understand what factors should I consider before I chose an option. Going through the posts in this forum makes me feel very comfortable with Taxol. Not sure if that is the right choice in terms of decreasing the chances of recurrence.
Any information that can help me make an informed decision is welcome.
Thanks,
Sid
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sid - I posted some study info on your other thread.
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the good news is that your Moms recurrence risk with a stage 1 mucinous tumor is already very low as I'm sure your MO has said. T/H is probably pretty equivalent to TCH in terms of preventing recurrence and has a better SE profile. Many oncologists would consider TCH overkill in this situation, but clearly practices vary when there arent large differences in outcome. Good luck with making the choice, I know this is a tough time. Once the choice is made, at least emotionally, things get easier
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Thanks TTfan and SpecialK!
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Hello you all,
Reading your alls testimonies has helped me a lot in what to expect. I want to thank you all for sharing. I am 34 years old, married and mother of 3. I have been diagnosed Stage 1, negative lympth nodes. Her 2+ My tumor was 2cmx2cm. I had a lumpectomy and I had to have surgery 2 times after my initial surgery due to positive margins. My oncologist also recommended a port which I now have. I was diagnosed in September 2015. I just had my 1st TCH treatment on Feb 2015. Next week will be my 2nd. I am to have TCH every 3 weeks x 6 following radiation and then Herceptin alone, every 3 weeks as well to complete 1 year. I had my 1st treatment on a wednesday and returned to work on Thursday. By friday afternoon my joints were aching and I felt nauseated, I had to go home. I was in bed Friday night, Sat & Sun. I had body pains, huge headaches and nausea. I didn't want to eat or smell anything. Monday, I got up and I told myself that I was going to beat this. I returned to work and slowly made myself eat. Throughout the week, I felt much better but then started with diharrea which lasted for about 3 to 4 days. and I broke out with pimples on my face and upper back (when Ive never had issues with pimples before) . Ive have been drinking a lot of water and coconut water for the electrolytes. I am now on day 15 from my 1st treatment and for that past 3 days, I have finally felt normal...My hair has begun to thin out, but I will not cut it. Knowing that my hair is falling out is one of the hardest thing about the whole process. My hair was long up to my waist. I recently cut it up to my bra line. That was drastic for me. I do have very very thick hair and I have enough for like 3 people. So I am hoping I stay with some. I will make a decision depending on how much hair I end up losing. I am going for a follow up today and my 2nd TCH treatment is next Wednesday. I will keep posting just to share my experiences and maybe help and answer some questions to someone newly diagnosed as well. My prayers go out to all of you all. God Bless.
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Dear EcTX, Welcome to the community. We are so glad that you have been helped by reading the posts of others and that you have reached out and posted your story. Please stay connected here for on-going support and information. Keep us posted on your treatment. The Mods
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So today is day 19 after my 1st TCH treatment. I have no symptoms aside from my hair still thinning out. I have lost alot and I mean alot of it, but like I said before, I have lots and lots of hair, so any random person can not tell, but I can definitely feel the difference. Other than that, I am feeling great. I went out this morning for a run and I am feeling pretty awesome. This Wednesday is my 2nd TCH treatment... Lets get it done
.... I'll Keep you all posted. God Bless 0
