Taxol & Herceptin

[LisaJ]

Hi everyone. I just finished 4 rounds of AC and will start a 12-week cycle of Taxol & Herceptin. I know everyone is different, but I am not sure what to expect from this treatment. Can anyone help? Thanks.

[CherylS]

Dear Lisa,

After AC, the Taxol/Herceptin was a breeze. I have been on Herceptin alone now August and really don't experience much for side effects from it. I think with the Taxol the feeling I had was more from all of the premeds, the steroids than anything. Ladies here recommended B-6 and L-Glutamin to help with neuropathy and I never got any using them. I was able to get out and do things which with AC was impossible. My hair started growing back while on Taxol too. I think the steroids made it grow faster. What is your diagnosis and how long will you be on herceptin?

[LisaJ]

Thank you so much for the response. I was diagnosed at Stage IIIA with 7 of 12 lymph nodes involved. I had a lumpectomy in December. Despite the lymph node involvement I had clear scans which I was so thankful for. I will start radiation after the Taxol and Herceptin and then be on Herceptin for the rest of the year. The last year and a half has been a long road for my family. My mom just passed away last Monday of lung cancer after battling a 1 1/2. For the first time I am coming to terms with my diagnosis. I have a 2 1/2 year old little girl who is the light of my life. It scares me to think I won't see her grow up. I am going to do everything I can to fight this.

Did you have 12 treatments of the Taxol/Herceptin? Did you take those supplements during your treatments?

[CherylS]

Lisa, Yes, I had twelve weekly taxol/herceptin and then went to herceptin alone every three weeks for the remainder of 1 year. Yes, I took the B-6 and L-Glutamin during the taxol/herceptin and never experienced any neuropathy. I don't remember the doses. They were recommended here by several of the ladies. Maybe a search would turn up the dosages. Let me try it and get back to you.

[CherylS]

Lisa,

I found a recommendation for 5 grams of L-Glutamine and 50-100 milligrams of B-6. I believe this is what I took too. Keep fighting. We have a lot in our corner, and that beautiful daughter is all of the inspiration you need.

I will pray for you.

[LisaJ]

Thank you so much Cheryl. What is your diagnosis? Are you still in treatments?

[al from Canada]

I would also consider 100 mg CO-Q10 2 X DAY for protection from the anthracycline / herceptin cardio-toxicity.

Good luck,
Al

[CherylS]

Lisa, for sure, add the COQ10. I didn't think to mention it before. Thank you Al.
I so far have been one of the fortunate Lisa. I found my own lump early, and it was still stage 1. Her2+++, ER+, PR-, grade 3. When I see such stories of courage such as yours I feel guilty about the fear that still grips me. You keep fighting. There are so many success stories, and with God's help you will be another of them.

I had some neoropathy and was prescribed 50mg B-6 in morning the 100mg at bedtime it seemed to do the trick. Good Luck.

[Sandy H]

I was taking 100 mgs of B-6 until I talked to an oncologist/hematologist in San Antonio who told me only 25 to 30 mgs a day because it can cause neuropathy! He had worked at MD Anderson. So then I cut back on it thinking he should know. hugs, Sandy

[Becky]

I took 5 grams of the L glutamine (took for 2 days before the taxol treatment, the day of treatment and the day after treatment). I still had some neuropathy in my fingers (not bad) and some leg cramps (walking and moving around actually helped alot).


I did not do taxol and herceptin concurrently (which is a bit better than sequentially as I take it (after chemo and rads were done)) so I started the CoQ 10 a couple of weeks before starting herceptin. Since I did not take herceptin with chemo, I take more CoQ 10 so follow Al's advice about dosage. After the taxol is over and you are not on rads either, you can take more. Don't take more than Al advises until taxol and radiation are over.

I am Stage 2A (1.9 cm tumor, 1 node, ER+PR (neg)). We're here for you and here to help you through.

Warm regards

Becky

[Tracy]

Lisa, it seems we are having the same treatment. I will get my last A/C on 1/31 and then start Taxol/Herceptin weekly for 12 weeks. I have heard if we made it through A/C then we can surely make it through this...I will be thinking of you.

[al from Canada]

Lisa,

For some reason I lost sight of the fact that you are taking taxol and herceptin concurrently so during your taxol treatment, don't take more than 100 mg. of COQ10 / day. One dose in the morning is good. After finishing taxol I would bump it to 100 mg 2 x day. The reason for the reduced doseage is because COQ10 is a very powerful anti-oxidant and anti-oxidants are NOT recommended while taking chemo.

I have always considered it a calculated risk taking COQ10 with chemo because of its benefits. COQ10 is the ONLY FDA recognized natural suppliment that has medical benefits, as a cardio-protective therapy. The jury is still out on concurrent chemo + anti-oxidants but until the final tally is in, I would err on the side of caution.

The only documented chemo + anti-oxidant negative result I'm aware of is a study where administration of curcumin (tumeric extract) reduced the effectiveness of adriamycin on human subjects. On the otherhand, I had a conversation about this very thing with a naturopathic doctor and his view was that taking anti-oxidants with chemo is like trying to put out an atomic explosion (chemo) with water from a garden hose (anti-oxidants). And just to clarify, herceptin IS NOT chemo, it is a targetted biological therapy.

Sorry if I have confused you and ....... please give us your thoughts on this Becky.

Good luck again,

Al

[skoolmom]

Not sure if this is how to respond to you guys, new to all of this, I usually just read everything! Lisa and Tracy, I too am on the same treatment, I will get my fourth dose of A/C on 1/31 then 12 weeks of Taxol and Herceptin. I wasn't worried about it until they told me they have to worry about severe allergic reactions to the Taxol that at worse could take me to the hospital. I'm allergic to penicillin, sulfa and codeine so I'm scared that I might have a reaction - does anybody know of any problems with Taxol like this? And can anyone decipher for me: the stage of my tumor was Stage II with one node positive, I'm ER/PR negative and of course Her2 3t, but what does the following all mean? T1b,pN1a,MX, G3. TR-2 BREAST? Thanks for all your info and help this is a wonderful site and I have posted it at my onc. office and told him about it.

[lisahammo]

Hi Lisa, Tracy & Skoolmom

I also have had Taxol & Herceptin. I had them both together for 6 months, which reduced my 10 liver tumours to 3, and I now have fortnightly Herceptin. The weekly Taxol was easy compared to the AC. The only real side effects I had was slightly tired that day & the following, but well able to function, and yes I did have problems with pain in my knuckles, knees and ankles. I began taking Glucosamine & Omega 3, which took about 4 months to kick in. I also take Co-Q10, multivitamins, evening primrose oil, and few others.

The Herceptin is easy, it's just my veins that are the problem.

I have a 5 year old son who starts school next week, and most nights I can't sleep for worrying about not seeing him grow up. I'm just about to pass my 1st hurdle, which was to see him start school. Now I look ahead to my next goal, of seeing his next birthday. In the meantime, I try to have as many 'firsts' with him as I possibly can. One thing that I have found works for me if the sleeplessness is REALLY bad - I write him letters about my feelings toward him, about my life, questions he may want to ask me, etc. I put them in envelopes, label them, and file them away for him, so that he knows I was always thinking about him, and he knows what my feelings were, without someone else trying to guess my feelings when explaining things to him.

Good luck with your treatments. My hair also started growing back about 4 weeks before I finished the TAxol.

Love Lisa

[sadie]

LisaJ
I too just finished my 4 rounds of AC; I will begin the Herceptin/Taxol 12 week regimen on Feb 10th; I 'm terrified! I get mixed responses from my onc & the nurses. The dr says the Herc/Taxol will be much easier than the AC and I MIGHT experience some muscular aches that can be treated with just tylenol. On the other hand, the nurses give me a sympathetic look and ask "do you have an understanding employer? The tiredness gets worse over time." Is this regimen going to put me on disability?!
CherylS: It was encouraging to read your response to LisaJ. Thank you.
Sorry for rambling, but I'm really nervous about this.
My surgeon said: don't worry about the HER2 factor because they got it all, so it doesn't matter now. He was surprised by such an agressive treatment by the onc,but he did not dispute it.
My IDC was 1cm; er+/pr+; Upon biopsy, HER2+++; Upon lumpectomy, HER2++; Sentinal lymphnode neg
Sadie

Hi Lisa,

I have the same chemo regimen like yours. I am done with 4 doses of AC and started with Taxol/Herceptin on Dec 6. I took 100 mg B6 and 10g each morning - noon - and nightime of Glutamine for 3 days beginning the day of AC dose.
The original schedule was for Taxol (full dose) to be given every 3 weeks. Due to problems with my WBC, the second Taxol dose was changed to smaller doses given weekly for 3 consecutive weeks followed by 1 week rest. First full dose of Taxol suppressed my bone marrow that neutrophil (WBC) was extremely low. This required hospitalization because I was running a fever even without visible or significant sign of infection. This would have been avoided if I was given Neupogen shots. For body aches and pain. I started with 1000 mg Tylenol but I needed something stronger so I used vicodine.

I completed the second set of 3 consecutive doses of Taxol on Jan 24 with Neupogen shots. The difference is like night and day in terms of the side effects. On the 3rd dose we managed to improve the dosing so as to reduce the side effects of the premed. Because of my sensitivity to alcohol (Taxol dissolved in alcohol) the Taxol mixture was further diluted from 250 mL to a 500 mL of saline solution and I requested for for slower drip. I didn't feel any bone/muscle pain this time. I did not even use Tylenol

Overall, I would say that Taxol side effect is nothing compared to AC. I will start my next Taxol dose on Feb 7.

I started with Herceptin at the same time as with Taxol. This is on a weekly basis for one year.

Take care.

[Her2nSue]

LisaJ,

Looks like we're on the same time frame with treatments. So far, haven't experienced any side affects compared to AC. Hope it continues this way. After the 12 weeks then I'll just be on Herceptin for a year and tomoxafin after that. Wish you luck, be strong and give lots of hugs & kisses to your daughter to help you through this.

Sue

[Her2nSue]

skoolmom, 2/3/06 was my first time with taxol and herceptin, and I can't underestimate the fact that I was pretty nervous. I'm allergic to several medications (6), so I was prepared for the worse. Surprisingly I had no reaction to taxol and was told if you don't react the first time, you won't on the other 11 times. I'm new at all this, too, but was glad to read about taking the B-6 and L-Glut. to help with taxol's other side affects. Good Luck with it all.
Sue

I did Taxol and Herceptin weekly for 6 months.
I suggest using sodium bicarbonate as a mouthwash several times a day to avoid "mushrooms" in the mouth. weekly Taxol seems to be better tolerated. I didn't take any vitamins or supplements because I've been told anti-oxidants prevent chemo doing its "good" work. I thought co-enzyme 10 was an anti-oxidant so I didn't take that either until after chemo. I did take magnesium and calcium because my levels went down. I had colitis,(given medicine which cured it), lost my hair, fatigue, no nausea to speak of, finger nails and feet nails became brittle, some skin rashes (not sure connected - still have them), some bearable bone/nerve? pain. I've never clear as to why Taxol and not Taxotere or which is "better" or has less side effects.
drink lots of water and clean your teeth before starting, also periodically have your eyes checked - cataracts came on for me but I'm an older person so may have happened sooner or later anyway - this is one side effect I never saw mentioned. Bascially I found it fairly "easy" given the horror stories I've heard. Fatigue was the worse for me but I love to read. Just remember it's saving your life and doing you great good so think positively and look forward to each treatment as a great and precious gift. listen to books on tape when you can't read. reading is a wonderful distraction and great pleasure. good luck. this time next year you'll have done it and be on the way to a healthier life and your new hair will be softer and thicker.
sarah