Taxol and Herceptin only for stage 1 HER 2 positive?
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Thanks for the tips regarding veins DeeC!
did any of you experienced neuropathy (hope i got that term correct) - eg. losing sensations on fingers or feeling funny on the fingers?
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Michele,
It sounds like a treatment plan that DeeC is on, but I believe she said it is not a trial/study. From the voices of our supporter's on this site, it sounds tolerable and effective. My appt with my MO is tomorrow and I'm wondering what her recommendations will be.
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mary - here is some info for you, linked below about dosing from a trial. It shows a dose dense (every two weeks) versus a weekly dosing, and shows what those dosings were. Important to also know that you will be measured for height, and weighed prior to your first infusion. For subsequent infusions you will be weighed. This is because most dosing is done by BSA, Body Surface Area, which is a calculation of height times weight, so if you have lost or gained the BSA changes.
http://www.medscape.com/viewarticle/805220
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Yes, I have some neuropathy. It started as tingling in finger tips and toes and gradually went to a sort of numb feeling. It doesn't bother me now that I am used to it. I understand it should go away after treatment. I hope!
Dee
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Thanks DeeC, if it's just at the tips, it should go away after treatment.. though it could last months or a couple of years according to one of the oncologist i saw. He also suggested for me to do the weekly Taxol (because neuropathy is one of my fears), and I could stop it before it's too late on the weekly regime rather than on docetaxel (Taxotere) which is once every three weeks, and hence a heavier dose of taxane. I was also told that once it reaches beyond the knuckles (close to the palms).. there is no hope of reversal.. i believe the doctor was sharing based on his experience as I don't seem to find it stated elsewhere. So, do sound out to your doctor if it goes beyond just the tips, DeeC.
Did anyone on this regime managed to finish the whole course without any neuropathy.. i know i can refer to trial reports for a percentage.. though hearing someone's personal experience is just way better than reading reports.
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yensmiles - a lot of women get a port put in their chest for chemo - it's great - no hand vein trouble!
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My MO appt went very well this morning. She was thorough and answered all of my 25 questions without tossing me out the door!
I will be starting my first infusion next Monday - Taxol and Herceptin for a 12 week period and then the remainder of the year will be the Herceptin alone every 3 weeks. I had a feeling this would be the treatment plan after seeing so many of you on this plan with similar dx's. I have scripts for anti nausea and anti-inflamatory pills. I also have a script for a wig. Didn't fill that yet since I'm getting my hair cut pretty short this week. Dentist appointment this week before the treatment as well. Did your doctor's tell you taking vitamin B6 will reduce the effects of neuropathy? Also drinking 8 oz of water 8 times per day will keep the energy up and reduce all side effects? No mention of a port. Today, I had an echo cardiogram and blood work. Even though I'm a little nervous about this upcoming infusion, I want to start shutting this Her2 mutated gene down!
I just read the literature from the doctor's office on Herceptin. Has anyone had a problem with it? Any input on this would be so appreciated.
Thank you and my best to all.
Mary
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Mary,
You are on the same regime as I am. Yes on the B6 but still have some neuropathy. I have had 8 treatments of Taxol/Herceptin.
Glad your MO was thorough and answered all your questions. Mine is good with that, too. So is my infusion nurse.
The last two treatments knocked me to the ground so MO skipped last week and I feel so good! Like I got my life back
Back to #9 on Friday. Usual day is Thursday but clinic is having a Cancer Survivor party on Thursday this week. Hubby and I plan to go.You all keep sharing and caring.
Dee
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Dee,
How wonderful, only 4 more to go! I am hearing that the Herceptin alone is pretty easy.
Have a great time at the Cancer Survivor party!
Mary
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My MO said, I was dx'd with IDC and DCIS. How can it be both? I forgot to ask her.
Also, can anyone shed light on me how their first infusion of Taxol/Herceptin went. I am nervous........
Thanks a bunch!
(((Hugs)))
Mary
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DeeC~ I am in the T-DM1 trial you talked about but I am at MGH. Found out today that I am one of the 25% who will be on the standard taxol/herceptin treatment. Disappointing, but I feel okay because this treatment has a great success rate!
Mary 1234~ we start the same treatment, the same day.
I had a port placed two weeks ago because I don't have great veins.
Feeling nervous, but informed because of all of you who share here.
Also interested, like Mary, in others' experiences with their first infusion.
Thanks.
Lynn
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Lynndeidre - Good luck to you and me! We are both on our way!
I am too a bit nervous about the first infusion. Quite a normal reaction. I agree, our supporters on this site keep us informed by sharing. I am so happy I found this support group!
Keep us (me) posted on how you are doing and I will too! You can also pm me anytime.
Good luck again on Monday!
Dee - How did your treatment go Friday? Hopefully, the mini-vacation from treatment last week made a difference. You are almost at the finish line with Taxol!
All - For those who are on Taxol/Herceptin only, were you told to take steroid pills the night before and the morning of your treatment? I wasn't. Someone on another forum said she had to, but I think she is on other chemo's besides Taxol. Today I started vitamin B6. I gave myself a headstart hoping it would ward off the se of neuropathy.
I read a great article last night that the end of HER2+ should come to an end soon. It was a reputable site, but I can't find it. I wish I saved it in my favorites. This gives us great hope. I'll keep searching and put the link on here once I find it.
Mary
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I found the article. I know it is a bit lengthy but worth reading.
http://www.lbbc.org/About-LBBC/LBBC-Newsletter-and...
Mary
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http://www.lbbc.org/About-LBBC/LBBC-Newsletter-and...
I found the article. It is a bit lengthy but worth reading.
Mary
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Hi all,
They are having trouble with my veins and mentioned a port. They don't think I will need one on the Herceptin, and as I only have three more treatments with the Taxol/Herception we agreed to tough it out. Occasionally my nurse can't get a vein and calls someone else and she gets it. Heating my arm with a hot blanket helps.
I will have to wait a few days to see how I do after my chemo break. I usually feel the worst symptoms on days 3 and 4 sometimes 5.
The survivor party Friday night put on by the clinic was a riot. The doctors and nurses did dances and skits. So funny to see my MO dressed as a cowboy doing YMCA as a part of the Village People! They had food and small gifts for all. There were many survivors. I met one woman who was a 51 year survivor. She said never give up.
Dee
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Hi Everyone,
Treatment #1 was yesterday. I got through it well. Getting there was not as well as the treatment. We had such terrible rain and the traffic getting to NY was awful. I thought we would never get there. However, we ended up getting there 1/2 hour earlier anyway - only to be backed up at MSK. Most people were probably late due to the weather. My husband and I got there around 10 a.m. and left appx 7:45 p.m.
Today, I feel great - maybe it's still the effects of the steroids. My RO consult appointment was today and that also went very well.
Mary
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DeeC: thanks for the mention on this board too! I'm one week behind you, but I get a break week every three. My MO consulted with someone who was involved in the study that finished Dec 13 regarding early cancer and this Taxol/H cocktail. I'm glad they found it because otherwise it would have been 6 rounds of TCH for me, which I understand would be much harder to tolerate.
I had treatment 8 today. 4 to go!!
Love reading all the experiences here. Thanks everyone for being here!!
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Hi, I finished my year of Herceptin on May 2 after having the 12 rounds of Taxol and Herceptin. The Herceptin by itself was easy to tolerate and I did have the muga scans every three months to monitor my heart function. It was quite a year with all the treatments involved but I feel so blessed to have had all the treatments that I had and to know that I am doing all that I can to make sure my cancer is gone. Thank you to everyone who posts as the more information we have the better.
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jmac01: Congratulations on finishing your treatment. I'm sure it was a rough road. Did you also do radiation? If you add up all the time from diagnosis and full treatment, I'll be at about 10 or 11 months, all in 2014. I know I'm lucky compared to some that have much longer, more difficult treatments, so I try to remind myself of that every day. Here's to your long, healthy life after traveling this crazy cancer road!!!
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jhodro: Thanks for the good wishes.The year of treatment while lasting a long time went by quickly. I had 33 radiation treatments. I had my last Taxol July 26 and started radiation in August. I was able to work during treatment so I consider myself very lucky. I am having some problems with the se from the hormone therapy but just as you said, every day I remind myself how lucky I am not to have had more severe treatments. Best wishes to you also as you progress through your treatments.
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jmac01,
Congratulations! Yesterday was my first taxol and herceptin treatment. So far I'm feeling pretty good. It is such good shares like yours that give us the confidence and hope we need.
Thank you for sharing.
Good luck to you!
Mary
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Good morning everyone,
My first night of treatment, I slept well. Last night, I was up until 3 am!
I should have taken a benedryl!!! Hopefully, I will sleep better tonight. I think it is the effects of the steroid. When I went to the RO yesterday, she noticed my breast was a little swollen and a little pink - the one that I had the surgery on. She just said to keep an eye on it. It doesn't appear that I needed antibiotics. Has that happened to anyone?
Last night, I put my feet up and it appeared my left ankle was a little puffed. It's fine today. It could be my imagination too! lol
Has anyone experienced any of these?
I'm going to try to get to the Gilda Club today. There is a breast cancer support group. If you have a Gilda Club not too far from where you live, you should check it out. It is great. Once you join, you can use their facility for all sorts of activities for free.
Enjoy your day!
Mary
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Mary,
I have some water retention on Taxol/Herceptin but the MO was not concerned about it. It's mostly in my feet, or at least where it is most noticeable. I'd keep an eye on it, it can lead to the tingling of the feet - that was something I experienced from swelling during my three pregnancies. I also had an infection in my incision from my lumpectomy, it was pretty hard and pink, like lumpy underneath. I had to take an antibiotic for it - - it also started to ooze a bit from the stitches even though they had formerly been closed. I'd definitely keep an eye on it - - if it is doing that, call and have them take a look at it. I had it for a bout 2 weeks and it happened about 2 weeks after surgery (the re-excision that I had to have). And for my treatment day, with the steroid, I usually sleep a couple hours max with some ativan, then i'm up the full next day. I am starting to fade a bit now, so I'll be heading to bed early, I'm sure.
DeeC: When do you have to return to the chair?
Good luck to all with minimal SE's!!
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Mary,
My chemo day is Thursday. I started feeling better today, just in time to start all over again tomorrow!
My worst days for SEs are usually Sunday, Monday and Tuesday. Friday is my best day because of steroid high. Saturday isn't too bad, but I can feel myself slipping into fatigue by evening. At least it is predictable.
Dee
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Dee, I think I've been on this steroid high for 2 days! Getting a bit tired now. Good luck tomorrow. Just think - you are almost done with taxol!
Jhodro, Yes I will keep an eye on it. After the surgery, it was lumpy too, but the doctors were all examining me and didn't make a big deal of it. I saw my MO Monday and she didn't say anything about the pinkish color. But yes, I will call if I see it getting worse. I get on the scale every morning to make sure I haven't gained any weight from water. So far, so good. My ankles today look fine.
Mary
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Mary, the steroids used to keep me up the night after treatment even though I was tired. I found that when they started lowering the dose on the pre-meds I was able to sleep better. Can you tell me what the Gilda club is? Best wishes to everyone
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thanks everyone for sharing your experiences! I had my first infusion on Monday. I felt fine. Yesterday had a great day. Today started out fine, but I really became exhausted in the middle of the day. I had a headache, was feeling a little nauseous....took some Motrin and a two hour nap. Feel better tonight but still tired. Wonder if it's the chemo or I just had a headache--guess I'll be wondering that all the time now.
Signed up for a "look good feel better" class. Anyone take one of those??
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Yes, I took the class. I already use some makeup but they gave us great stuff. The more expensive kind. I enjoyed the class. Learned how to make eyebrows in case mine fell out! They are starting to go now.
Also taught us about wigs, hairpieces and hats/scarves. I recommend the class. I was able to help some of the new women who were newer than I to chemo. Felt good about that.
Dee
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Gilda's Club is a club that was started in Gilda Radner's name. She was the young comedian who passed away from ovarian cancer at the age of 27. The club is for anyone who has experienced cancer. They have all sorts of support groups for specific types of cancer, as well "living with cancer", games, yoga, meditation, lectures etc.. I believe the club may be scattered around the country. You can google it and see if there is one near your area. It is a nonprofit organization and is run by donations and fundraisers (members are not expected to be the donors.) I have gone to a few of their meetings and want to try one of their yoga classes. I just haven't had the time.
I am going to look into the Look Good Feel Better class tomorrow. I got my hair cut into a pixie style like Jamie Lee Curtis so it wouldn't be too noticeable if it starts thinning. At the hospital the other day, I was speaking to a woman who was on strong chemos. Her hair fell out completely. She is now starting taxol and they told her that her hair will start growing back while she's on taxol. Did anyone have thinning hair where it wasn't too noticeable? I'm probably wishful thinking!
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NJ: my MO said that hair loss on Taxol only is about 1/3 of the people. I hoped to be in 2/3 that didn't. Unfortunately, after getting my pixie, it started falling out on day 21. By the next day it was so thin, I knew I wasn't going to be able to deal with it, so I got it buzzed off. I was happy I did. I also get a lot of acne from this treatment so it felt better getting rid of the hair. I got a wig, which I wear sometimes, and I got a few hats and scarfs that are elastic with little ties. I also ordered 'buffs' that I've heard on other boards are great for summer. Good luck, hopefully you get to keep your hair. The anxiety about whether or not you'll lose it is way worse than the actual loss, at least for me!!
Dee: my schedule is very similar to yours - just start it on tues. Wed is good til I crash. Then Thu/Fri/Sa very tired and Sun/Mon start to feel normal then another treatment tues.
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