Taxol and Herceptin only for stage 1 HER 2 positive?
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Sula....I scheduled my infusion so I could hopefully feel good enough to go out with friends on the weekend, so normally, it went like this.
Monday-t/h infusion with decadron and aloxi, 8:00 a.m.. Woo hoo..all peppy. Went to gym immediately after, around noon. Worked out like a fiend, all hopped up. Hit the grocery, and ran any other errands that needed to be done. Got home, bed around ten, where I sat with a laptop, wide awake all night, working on things.
Tuesday-6:00 a.m. Started feeling tired. Slept until around noon. Rest of the day getting more tired. Big D or C set in. For me. usually the C was around pain pill time. I will take D anytime.
Wednesday-felt crummy and tired. Pretty much laid around.
Thursday and Friday-started to feel better, but low energy
Friday,Sat, and Sunday-felt pretty good.
Hot food never tasted good to me. Red wine was awful, and I love red wine. I did a lot of fresh veggie/fruit/protein powder smoothies in the morning, veggies and cold chicken at lunch. I especially liked and still do Wolfgang Puck canned soup...organic free range chick and noodle. its the best.
After my BMX, I had the big C so bad, I was nearly in the emergency room. AAAwwwwwffffuuulll. Never want that again.
On dose dense herceptin, I started at 30, but had all the same thing as Special K, with nausea thrown in, which I had very little of with the chemo blend. Ninety minutes did the trick.
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Thank you, BBwithBC45, I keep drinking water and hope that it is just temporary.
Suladog, I am sorry that you have a hard time this week, PatiMN is right, drink a lot of water to keep yourself hydrated. I always have constipation since I was a kid, during the chemo I drink a cup of water when I get up, and then have a banana and sweet potato for my breakfast. I am tired of chewing all the vegetables, I just use Vitamix to ground all green leaves and drink several cups a day, so far I am O.K. Hope that I can get away from constipation on the road. Take care
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Thank you for the sharing, fluffqueen01, the weekly pattern is similar to mine, nice to know that you are doing great these years, it is really encouraging!
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thanks everyone. It's good to know there are others who've been down this path. Constipation is just the opposite of my problem. Seems I can't keep too far away from a bathroom lately. I drink a great deal of water everyday, I always have so hydrating is not the problem. Having gotten some kind of virus on top of this is not making it any easier, as it's hard to tell the difference between what's going on from the bug and what's going on from the chemo.
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Suladog, so sorry you're feeling so crummy. I do thank you for posting, it will help me when I get to the halfway mark.
Going for my infusion # 2 today and woke up with a pounding headache. I wonder if it's from my anxiety.
I hope all you ladies have a nice, SE-free day
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michelle - I think i could have wrote almost the same thing. I found a lump only 1 week after my doc appointment in which it was missed....had ultrasound and a mammo and they immediatley scheduled a biospy...in which I got the call on 1/28. I have only seen my doctor that will be treating me once so I don't know what i plan on doing just yet...I have an appointment on March 16 to finalize the surgery and treatment options....I think what you are doing for treatment is what was suggested to me as long as nothing has spread to my lymph nodes but since I really don't know until surgery I just in the waiting stage...
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Dear ankledolphin, Welcome to the BCO community although we are so sorry that your breast cancer diagnosis has brought you here. You have joined a supportive and knowledgable community of others who truly understand the impact of breast cancer. Please keep us posted on your treatment plan. The Mods
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My situation is so similar. I had a mastectomy of my left breast to remove what we thought was only ductal carcinoma. The HER2postiive tumor (4.4mm) was found in the pathology. So, before I can continue my reconstruction I have agreed to undergo chemotherapy (taxol followed by herceptin). I have had amazing support but I am afraid of how this will change my life. More importantly, I am afraid what will happen if I do not do this. I have read extensively and I know this is my best option. I start treatments on March 30. I would love to have someone else to go through this with me. It's a lot less frightening when you know you are not alone.
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Hi, JodyinSA
I started my treatment on 2/20, before that I have read all the posts several times, I really appreciate everyone in this forum. It is true once you start the chemo, you will calm down and adjust your weekly schedule accordingly. I am in my infusion #3, so far I am doing good, fatigue is from my heavy menstrual bleeding (near three weeks, happened before my chemo). Be honest I am still nervous, who isn't? It does change my life, it lets me see how lucky I am to be loved and capable to love all these years. You will do fine I believe.
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just to share my experiences from last three infusions
So far up to my #3 infusion, all SEs are minor,
1. runny nose (less serious than my seasonall allergy), I use Ayr saline gel for relieving the dryness. (bloody nose is occasional, not dripping blood just some tiny blood in nostrils)
2. minor headache (sometimes), no pain killer needed
3. fatigue (majorly due to my heavy mentrul bleeding right before the chemo, I have uterus ablation to stop the bleeding last week, however I am already anemic)
4. hungry all the time (steroid will increase your appetite. taxol will kill fast growing cells which include stomach lining, it makes you sensitive to stomach acid, I keep snacking every 2~3 hours such as bananna, baked sweet potato, crackers etc.)
5. hair shedding, it starts from #3 infusion.
6. skin breakout (just one on my nose, my first acne in my life)
I have not had my port implanted, it is a long story, One MO said that I don't need it, my current MO wants me to have it. I may have it implanted next week.
Exercise 30 minutes every day
drink a lot of water, drink protein drink when I am tired of eating high protein (meat/bean)
Do regular house chores to keep me active. (shopping, walking the dogs, yelling at my kids)
Vitamin B6 and L-glutamine to prevent neuropathy.
The first two days are my energized days, the first night is sleepless night ( I take Benadryl to knock me off), the second day I am all flushed (thanks to steroid), I start to feel tired on the third/fourth days, and feel better on fifth/sixth/seventh days.
My premed are Decadron 10mg (lower to 4 mg at second infusion), Pepcid 20mg, Benadryl 25mg
#4 infusion: They took out Pepcid and Benadryl from my pre-med as three infusions are enough to show that I am not allegic to taxol.
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Hi Ladies,
I haven't been on here in a while but just spent some time reading through all these new posts. It it so awesome to see all of you women supporting one another. I remember being newly diagnosed and totally overwhelmed with the enormity of it all. It was so nice to have this forum to be able to talk to other women who were going through the same thing.
I wanted to let you ladies know that I FINALLY made it through my year of treatment! Had my last herceptin on March 2nd. The end of treatment for me, unfortunately, was bittersweet. I lost my biggest supporter just days before my second to the last Herceptin treatment. My beautiful mom passed away very unexpectedly, from complications from an elective surgery exactly one year to the day, after she supported me through my lumpectomy and lymph node removal. She was not only my biggest supporter through my breast cancer diagnosis, she was my biggest supporter in life. I never imagined I would be standing at the finish line without her. : (.
I stand here a year later, with a full head of hair , looking almost exactly like I did before treatment. The only visible reminder of the ordeal is a barely noticeable scar on my left breast. What you don't see are the changes on the inside. Unbelievable gratitude for all of the tremendous support and outpouring of love that I received throughout my treatment from so many people. Looking back on this year, I was literally carried in every conceivable way by love and prayers. This very unexpected ending to my story makes me really realize that NONE of us are guaranteed tomorrow. Cancer or no cancer. The only thing we NEED to do, is to treat each day as a gift ~ be grateful for all the love and support of our families and friends and be good to each other.
I wish each and every one of you ladies easy, side effect free treatments, and lifetime of love.
Michelle
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Michelle, I am so sorry for your loss. Maybe the Lord let her remain here on earth for the last year to help you through your ordeal. We never know what tomorrow will bring. I do know the heartache you are feeling, but you must try not to let it depress you to the point of it lowering your immunity anymore than it already is from treatment. The pain will never go away, but it will lessen, where you can remember the simple times you spent together and smile.
{{Hugs}}
Nancy
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Michelle.
So sorry to hear this
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Dear Michelle
I would like to give my sincere thanks to your beautiful Mom. As she is the great support to you, you stand here and become a great support to us.
Colleen
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Michele,
I am so sorry to hear about your loss. I lost my Mom too and know the pain very well. Your Mom was meant to be there for you through the worst part of your ordeal. This dreadful ordeal has made us stronger than we ever knew we were. Your Mom knew you were going to be okay and make it to the finish line and beyond.
Michele, we all are blessed with this thread that you started. You gave us a place where we can go for support and a place to share our ups and downs as we all make it to the finish line. Like you said, life is truly a gift.
My sincere condolences.
(((Hugs)))
Marie
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Thank you ladies so much for the kind words. I am certain I will miss her forever and I am so blessed to have had such a wonderful mom. I know she would want me to be happy and to enjoy life and I will do my best.
As far as finishing treatment goes, I will let you know when my nose finally stops running and when my fingernails get strong again. : ) Those are the only two side effects I noticed from the herceptin. I am still not three weeks out from the last one so havent noticed anything different yet.
Wishing all of you ladies a speedy and uneventful treatment and much good health and happiness beyond!
Michelle
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Michelle, I'm so sorry for your loss. It's wonderful that your Mom was such a great support to you. She must have been so proud of you. This place that you created truly is a blessing to so many of us. I'm thrilled to hear that you are doing so well.
Welcome to all of the newcomers here. I hope that you will all do well and experience minimal side effects. This group was an amazing source for information and support for me. I finished my 12 weeks of TH in late October, finished six weeks of radiation in mid-January. I'm continuing on with Herceptin into July and just started taking Anastrozole a few weeks ago. I've been very lucky to get through everything very well. Side effects were all manageable with rest, diet, and exercise. I had some mild neuropathy that is almost gone now. My hair is growing back and getting thicker. After a lifetime of straight hair I now have chemo curls! I am so grateful for the love and support of family, friends, and the amazing women here who have gotten me through everything. My life is richer for knowing all of you.
Hugs, Sandy
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Michelle,
this is never easy. I nursed my mom through ovarian cancer and chemo. She was willing to give it a try because I'd done chemo 22 years before and told her she could do this , as the doctors were encouraging her. She had a pretty easy time of it chemo wise but ultimately did not go to see a doctor soon enough, and we lost her. I think about her often as I'm now back in the same infusion room I used to take her to just three years ago, which is slightly creepy. You are lucky to have had your mother with you though through the hardest part of this treatment, she was exactly where she needed to be for as long as she needed to be to help you.
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I'm so sorry to hear of your Mom's passing Michelle! You are so right about the lack of guarantees! In some ways those of us on this board are lucky to have been forced to face that rather than going blithely on as if life lasted forever. I hope that along with the sadness, you are finding peace in your memories and your remaining family and friends.
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Is there anyone not using port for TH? My MO told me that sooner or later I need a port anyway. I am just tired of getting another surgery again....
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Michelle - so sorry to hear the sad news. My condolences. I thank you so much for this great thread.
Ladies - I will be starting my treatment on Thursday and just wanted some tips in regards to the following:
1) How much Taxol and Herceptin are given weekly? I know it's most likely a standard amount, but I was just interested if anyone knew so that I could compare with what I get on Thursday.
2) it seems as though L Glutamine and B6 are the keys to helping with Neuropathy. What are the amounts I should have daily of each?
3) Any other medications I should have on hand in case of a certain side effect, such as Immodium for diarrhea?
4) Anything special I should do the day before, day of my chemo treatment?
5) Eat red meat to keep my blood counts up?
6) Anything else that anyone can offer?
Thanks
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Colleen, lots of people don't have a port, but I will tell you, I thank a God for mine every time I had infusion, bloodwork, etc. it was a godsend. Tell them you want a prescription for EMLA cream, slather it before they access it for treatment and you won't even feel the prick. The surgery isn't a real big deal, but it is really tender for a few days. I remember thinking my port area was way more tender than my bmx....might be because I had a pain pump in all around the bmx area,so had little pain there.
Curious...I think the amounts are all based on your weight, etc. I'm not sure there is a standard. I set my date for infusion so that I would hopefully be feeling well enough on the weekend to go out with friends, etc. if you get infusions on Thursday, you will probably be hopped up on steroids for about 24 hours, then tpreally tired for a couple days and then start to feel better.
I didn't have too much neuropathy. My feet and fingers were freezing all the time...so ice cold that my DH would put a heating pad and hot water bottle in bed to help warm them up. Some stiffness. I took Acetyl l carnitine also. I had sent myself into a panic disorder when I was diagnosed so my NP put me on Cymbalta for two reasons. First the anxiety, which that fixed, and then she picked that because it helps with joint pain, and she knew the chemo could cause that. I don't know if anything specific worked, or a combo, but I didn't have much. I had a script for nausea, which I rarely needed. I never took anything for the diarrhea because Imodium tends to stop everything for a couple days on me and that was worse. I had dulcolax stool softener, not laxative, for the C.
If you don't have to work, then just take care of yourself. If you are tired, rest. I always used the infusion day to run around like a maniac to get everything done as I was full of energy from the steroids.
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curious, I asked my MO about dosages and kept his written response. The dosage of taxol is 80 mg/m2. M2 is square meters of body surface area, but they determine it by your weight. The weekly dosage of herceptin is 2mg/kg - again based on weight. Your first dose of herceptin is a "loading dose" - more than the regular weekly dose but I can't remember if it's twice or three times the weekly dose.
My chemo nurses suggested waiting to start the l-glutamine and B6 until neuropathy symptoms appeared. Some people never have any neuropathy. I think it was after my 3rd treatment that I started feeling a few twinges of neuropathy, so I started on the l-glutamine (30 grams per day total, divided into two or three "servings" - a powder that you mix in with the liquid of your choice and chug down) and B6 (I took 100 mg per day).
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Thanks so much fluffqueen and PatinMN for the tips and info. I appreciate it.
I have my l-Glutamine and B6 ready.
Looking forward to getting started, as I am tired of waiting and getting really anxious. Let's do this!0 -
I had my first treatment of 12weeks of Taxol + Herceptin Monday. Will do radiation after and continue Herceptin for rest of year. Doing well. Any tips welcomed to manage upcoming side effects. IDC Stage 1 4mm Intermediate Grade ER/PR negative HER2 +. And DCIS stage 0 comedo High Grade 1.3cm. Lumpectomy.
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Hi ladies ... hope you don't mind if I jump in here ... my treatment plan is a little different as I have to do both AC and a Taxol. I am ER- PR- HER+ and my tumour is a monster - over 8 cams so I am doing neoadjuvent chemo in the hope that the tumour will shrink sufficiently to enable me to have a lumpectomy rathe than a mastectomy.
I was due to start with the AC first and then the Taxol, Herceptin and Perjeta but due to some liver issues my MO started the Taxol combo first. I had round 9/12 today and while there have been a few glitches, I've found ithe treatment and side-effects manageable. Day 4 and 5 are usually my worst days and I do have slight neuropathy (worse in my feet), I started losing my hair around week 2 and shaved my head around week 6. I've also been really lucky with my nails.
Good luck, hope your treatment goes well and you have minimal side effects
Di xx
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fluffqueen01: Thank you for sharing your port experience, it does calm me down. I have my port implanted today, hope that I will soon get used to it.
Carmen: Good luck on your #1 infusion, I only prepare B6, L-glutamine and Ayr saline gel when I start my chemo. My infusion is on Friday to match my husband's schedule. All your questions are exactly what I have before my first chemo, the nurse spent the firsr 30 min to go through my questions at the first infusion. (I did catch a wrong equation to calculate herceptin dosage, however the total number is correct. PatinMN has the correct basic numbers above. My loading dose is double dose.
dimccleland: Thank you for jumping in,I am curious how much taxol and herceptin will shrink your tumor, hope that TH will give you a dramatic result.
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Thanks Coleen,
I'm sitting in my chair right now getting my first taxol infusion. So, obviously I'm feeling good at the moment. Met another person that is HER2 positive and doing the same treatment. Once Taxol is finished, they will then do 90 minutes of Herceptin. Been a really long day.
By the way, here in Toronto, Canada - they do the treatment a bit differently. The Taxol is given weekly, but the Herceptin is given once every 3 weeks even during the 12 weeks of Taxol. I know that most everyone on this thread is doing or did the Herceptin weekly for the 12 weeks before going to once every 3 weeks. My MO said it's the same exact amount given but just triple the dose every third week instead of smaller weekly dose.
Anyway, I'm trying to keep myself busy sitting here. Got at least another 2 hours to go.
Carm
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Congrats to CuriousCarm for presenting the facts and choosing your treatment!! I haven't been on this thread since last year, but I am one of the 406 participants in the Dana Farber TH protocol study. You are correct about the ages of the participants: I was 54 at the time, BUT there were clearly women in their 40's who were part of the trial. I was blessed to be part of this "Less Can Be Better" trial & it will be 6 disease free yrs. in July. Wishing you the same, CuriousCarm! ❤️
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