Taxol and Herceptin only for stage 1 HER 2 positive?
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Thank you Nancy! Safe travels to you as well. My MO advised to wear sunscreen #45 each day. I'll put it on - just can't wait to be on our way. We take the train and get the bedroom. It's a fun trip!
Enjoy!
Marie
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Marie NJ Looking good bring us back some warmth and sunshine. I made it the thru the Rads and so for herceptin hasn't caused me any issues. Enjoy your holiday!
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thanks for the encouragement Marie! You look wonderful!
I had my second to last Taxol yesterday and feel so lousy. Exhausted but can't sleep. Hungry but can't eat. Fingers numb and clumsy, nail beds hurt. Yuk! My friends all want to celebrate my last Taxol next week, but all I can think of is that while it's a wonderful milestone, I'm still going to feel lousy and be bald for quite a while. And then rads and Herceptin and AI and bone med infusions. One day at a time I know.
I needed your reminder that this will pass and I'll have my life back again, whatever new normal looks like.
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Hi, I am Stage 1, Her2+ and both hormones positive with clear margins and negative sentinal nodes from lumpectomy 2 weeks ago. Discussed this with MO and she said that this study only followed for 3 years and not appropriate for me as those who are hormone positive have recurrence of cancer for many years beyond that. I had hoped to avoid the heavy duty TCH chemo side effects but that is what I will be doing starting March 2.
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Birder... Did you consider the ATEMPT clinical trial ( if there is a trial location convenient to you)? Requires Her2+ to be a 3+... You didn't mention how positive you were. Maggie
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so glad to find this group!!
I was just diagnosed with a 7mm her2+ breast cancer no nodal involvement. There was some discussion between UCSF where I go now and Cedars Sinai in LA where I had triple negative breast cancer treated 25 years ago in my 30's. The Cedars guys saw my current pathology and said all I needed was hormonal therapy since the tumor was mainly er positive, the guys at UCSF were recommending 12wks of 80 mg taxol followed by 30 minutes of herceptin, then 30 minutes of herceptin for the rest of the year.
Then the Dana Farber study came out and we decided to go with the taxol herceptin plan. I thought I was going to get away with just a tamoxifen pill.
25 years ago I had CMF for about 8 mo with a "poor prognosis" yet here I am. The taxol herceptin is so far no big deal. I've been doing this now for a month. My main side effect has been heartburn, and the only thing that really annoys me is that it takes a whole day out of my week as I also am wearing the penguin cold caps for 5 and 1/2 hours on chemo day. But hey, no hair loss! Wish I had those back in 1990.
This chemo is a lot easier than CMF ever was. Glad to see you all here and hope to learn more about this taxol/herceptin treatment
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I am a grade 3+ but no centers in my state (Colo). But I am not sure I would want to do this clinical trial given the info from my MO about late cancer in those of us who are hormone positive.
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I was going to do a trial at UCSF taxol/ herceptin versus TDM1/ herceptin for small her2+ node negative cancers my doctor Laura Esserman thought I'd be a great fit for it but it turned out they only wanted people who'd never had BC or chemo before and I'd had it 25 yrs ago so I didn't qualify. Therefore, I'm now doing taxol/ herceptin.
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MarieNJ, thanks for your positive update. Love the hair, looks great. Enjoy warmth of Florida.
The Mods
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Hi everyone - My situation is a tad different. I started out on the TCH regimen and made it through 2 full cycles before it was discovered that I was severely anemic from the carboplatin. So in lieu of treatment 3, I had a blood transfusion. Good times! Went back for treatment #3 ten days later and my MO had decided that he would remove the carboplatin for the remainder of my treatments. So for treatments #3-6 I am on taxotere + herceptin only. He told me he does this often because the carboplatin wreaks havoc on a lot of patients' bone marrow. He referred back to 1998 when they were first doing TCH trials and said that the carboplatin had to be removed in many women who were in the study. He told me that there was no difference in survival rates/chance of recurrence and that it's a much more tolerable treatment plan without the carboplatin. So although it's not taxol, they are sister drugs, so have similar effects (although i think taxotere is a little less harsh than taxol). I'm at UPMC Magee Womens Hospital in Pittsburgh.
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My mom is 71 years old and will be starting this same treatment for Her2+ and ER+ 1.7cm tumor that was IDC. Was not in her sentinel nodes and she is at Stage 1A. We were hoping that she wouldn't need chemo. I know it is going to be hard on her with her age. Anybody in their 60's or 70's with this treatment? I'm worried she won't be able to tolerate it.
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Findmewdw, I was 60 at diagnosis and had few problems during treatment. I continued to work except on treatment days (I did cold caps to save my hair, and it takes up pretty much the entire day). I walked 30 minutes at the gym 3-4 times a week which I think helped. Never had any nausea; I did become anemic which is common with taxol. I took l-glutamine and B6 to ward off neuropathy. This treatment regimen definitely affects people differently, but it is less difficult than most other breast cancer chemos. One thing you might look into - I believe there is a trial going on for older women (not sure of the age threshold, but in the 70s I believe) to give them herceptin without any chemo. If your mom qualifies for this trial, that might be a good option.
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PatinMN: Thank you for your response. My mom has had some issues with anemia previously. I knew that would be a concern with Taxol. I have not read about a new trial with Herceptin. I will look into that. The oncologist said that we would try the Taxol and see how she does with it. He seems to question if it will be too much for her, too. She has an autoimmune disorder already, so I'm worried that she won't be able to tolerate it. Yet, I want the best form of treatment for recurrence, also. I will look into the new trial.
Thanks again for your help. I have read several posts about B6, which her dr has not recommended any supplements. Another question for me to ask him. I wish you continued good health.
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Hello Ladies,
I am officially joining the group - just saw my oncologist and I'm starting weekly Taxol/Herceptin for 12 weeks on March 3rd. After that, Herceptin only for the rest of the year. Next week I'm getting the Mediport (that's the name, right?).
I'm nervous.
BB
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findme, I am younger than your Mom, 58, but finished Taxol #12 today with no serious issues. I worked through the first two months, have been off since then as the fatigue was too much to keep working. Other SE were annoying but far from debilitating. The meds for the various GI issues take a little time to fine tune dose wise, but they work well. I highly recommend both L-glutamine 30 grams a day divided in 2 to 3 doses and Vitamin B6, 100 mg daily to prevent or treat any neuropathy symptoms. That regime didn't eliminate my symptoms ( which began early enough to worry my MO, week 3 ), but did stop the progression quickly. I wish I would have taken it from the beginning though.
BB, so sorry you are here but there is a lot of great info and support! It seems like yesterday I was just starting my first Taxol and pretty dang scared. It went by very fast and while not a cake walk, has certainly been quite tolerable. All the things I said above apply to you too!
Please ask away as you think of questions. We're all here to help however we can. Good luck with your port placement, most of us found it pretty easy and very convenient. Others went without a port and did fine as well.
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L Glutamine and B6 for me, too. No neuropathy. Also, after chemo when your hunger comes back, a little tiny bit of Lglutamine when you crave carbs or sugar will stop the cravings immediately. I had a lot of l glutamine powder leftover. I bought the powder cheap on vitacost.com. Way cheaper than gnc or anywhere else I've seen.
I just turned 40 so I can't opine as to how an older woman would fare. With that said, I had very few SEs- none debilitating. More annoying than anything. Right now I'm dealing with herceptin SEs - mainly headaches and anxiety. Not normal anxiety resulting from having a cancer diagnosis. This comes on out of nowhere and feels like panic. Never had anything like this before, but I digress. This regimen is tolerable but will sneak up on you.
BB - I cold capped as did PatinMN. We didn't lose our hair- not enough for either of us respectively, to notice. I see some growth around my nape that may have been lost,but that's it. It's no picnic,but doable.
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btw- Marie I hope you're enjoying the sunshine! It's freezing in Jersey! Finished radiation last week - so I have one really tan boob. That's about the closest to sunshine and a tan I will get for awhile! Hope you're resting and feeling free!
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TTfan,
Congrats on finishing your Taxol/Herceptin!!!! So glad it all went well. I've taken your advice on what to do, am about to do #4 on Fruday, so far so good.
BB,
Sorry you have to join this club but having done. Chemo 25 yrs ago in my 30's this is a lot easier. I'm cold capping and so far it seems to be working
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I got through taxol and herceptin without many issues. For those of you who are triple positive, you might want to check out that thread also. Lots of help and info there. The general thought is that herceptin works better mixed with some chemo. My oncologist followed that, but he also said they thought that largely because most studies had been done using the two together and herceptin was new enough that they hadn't studied it much alone.
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I have a friend who's an MO in Tokyo, breast cancer specialist and he was telling me a few months back that they're doing some Herceptin only trials there for early her2+ people. Very interesting
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Hi Michele,
I was recently diagnosed with a small (3.5 mm) IDC that is er-pr- and Her2+. I am struggling to decide whether I should get chemo. The regimen would be 12 weekly Taxol and year of Herceptin. How are you doing with that regimen? I had an oncologist who said I don't need treatment. 4 other ones said I should.
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Hi Daniella,
Well, we brought some chill down here to Florida! It is going down to 35 tonite. It should be all uphill from 9am tomorrow morning.
Findmewdw - I am 63 and finished taxol back in August. I now am on Herceptin only until June. No major issues. Annoyances - yes. Some minor rash issues and neuropathy (numbness, no pain). I was told it should go away or lighten up as I get further from taxol. Your Mom will be monitored closely. She should be fine. Herceptin is the main med for Her2+. The scientific protocol is low dose taxol with Herceptin. I was told the taxol (chemo) is given as a boost to Herceptin. There was a nice woman on here who was 70 yrs old and she did fine. Good luck to your Mom.
Hugs,
Marie
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suzie... attaching an article I found helpful in decision making.. http://jco.ascopubs.org/content/32/20/2122
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dear All:
I just had my first TH treatment, after reading EVERY post several times, I sailed through it without any panic attack.
As I know that it is 12 weeks journey, I will do my best to recover for people I love. Hug every one of you!Wish me a good nght sleep....
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colleen1013,
I had my 4th T/H treatment today and can tell you this is a very gentle chemo as chemos go... I had chemo 25 yrs ago in my 30s and this ain't your grandmas chemo . You'll come through this like a winner
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Hope 9, what is your regimen? My biggest problem in all this is sensitivity to meds, even at low doses, as you said you were.
I have, so far, a possible stage 1, grade 3, estrogen and progesterone positive, HR2 positive invasive ductal carcinoma.
Did you have a lumpectomy or mastectomy? How did you handle anesthesia?Were they able to test if for you first in case you reacted? Some of my med reactions are respiratory, with mucus production, which might be hard to deal with under anesthesia.
How are you reacting to radiation if you are having it?
What's worse is that I don't really have a specialist who can explain this and advocate. I saw an immunologist who stated that my "Immune system has gone awry." I have a lupus doctor for my autoimmune issues, and a neurologist, and an endocrinologist who is investigating my low cortisol which may need to be supported for surgery. The thought of getting info for the surgeon and MO from all these specialists is tiring! I mostly have avoided docs because I cannot take any of their meds (except baclofen), so in some ways they will have to take my word for it.
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Thank you, Suladog. I am glad to know there is someone under the treatment just before me. I got steroid flush face on my second day, I am on lysteda to deal with my heavy menstrual bleeding, my period is delayed almost two months due to this bc stress, and comes back right before my chemo almost makes me anemia. Hope the medicine will work.
I do have a question, how can we be sure to have enough nutrition during chemo? I hate to calculate each nutrition every day, I plan to eat regular meals plus more protein, is this good enough?
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coleen1013,
I've been a vegetarian / vegan for a great deal of my life. 25 years ago when I had bc which my doctors now think was triple negative I got through 8 rounds of CMF keeping a vegetarian/ piscaterian diet and adding in dairy. After I finished chemo I was advised to add meat to my diet which did.
When I was diagnosed this time with HER2 I was eating a vegan diet I have now expanded to vegetarian adding in dairy and fish again and some small amounts of red meat. So far so good. I haven't ever had any anemia issues during either chemo. My advice would be to eat what makes you feel good. The more you're able to get nutrition the better you are.
I was advised by one of the women on the boards before I started to take 15 mg (3 rounded teaspoons) of L glutamine 2x a day
Vitamin D, vitamin b6, silica, and biotin every day. I'm sure others have suggestions also. Anything you need you can always ask me since I'm just a few clicks ahead of you on the road.
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I have L-glutamine question - does it matter if it's powder or pills? I had a difficult time finding it; they didn't have it at Target pharmacy, I couldn't find it at Walgreens either. Finally I found it at GNC and I bought pills. I think they are 1000mg.
Also, I asked my oncologist if I could take Silica and Biotin, because I did want anything to interfere with chemo drugs. He didn't give me a straight yes or no answer, just that he was not aware of any research
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bbwithbc45,
I asked my Dr he had no problems with any of the L Glutamine I bought powder from Pharmaca, Whole Foods also sells it. I take 3 tsps in half a glass of water 2 times a day. As to the vitamins he has no problems with it. He works with UCSF which is where I had all my surgeries and consultations. He said a lot of his patients take L glutamine as it helps prevent neuropathy, it also has to do with the immune system and energy. Just make sure you are taking the right amount
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