Taxol and Herceptin only for stage 1 HER 2 positive?
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Daniella, I'm sorry about the port. I know you are disappointed. My experience was very good and I hope the same for you. I was a little sore for a couple of days but did not have pain. It just a bit weird having it in at first but I soon got used to it. The Emla cream is great. I forgot it a couple of times and the nurse can spray some numbing stuff on you, so you will be fine! Lots of twists and turns in this adventure, huh? I miss my super-productive, steroid energy day after chemo since they lowered my dose.
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Daniella, I do know what you are saying.. I don't think the Dr. In Clifton will give you the prescription for the EMLA cream. Call MSK and have them call it into your pharmacy. The day after installation it will be very sore and you will definitely need some relief! Tell the Dr. that they plan on using it the next day because he put mine directly under the incision and with the glue and steristrip on it there was little room for the needle. Mine was three days after so the steristrip and some of the glue had fallen off by then. Put a good size blob of the EMLA all over it cause you don't know where she's going to stick it. Then cover it with Saran Wrap or press and seal to keep your clothes clean. An hour before is not too much time! She will swab it with alcohol anyway. The next infusion will be much easier after the port heals some.
My issue seems to be with the steroids. Last night I was awake all night again. Had a cup of tea with honey and my face stared swelling. I felt as if I had a 104 degree temp, arms, face, legs burning. My actual temp was only 97.1 degrees. I kept a cold cloth on my head and drank a bottle of water each hour then peed it out and started the next one. This AM called the nurses and she told me I was having an allergic reaction to the steroids but would be getting the same amount of it on Monday (?) what's wrong with that picture? She said if they didn't give me the steroids I would be vomiting so they need to continue it. I am so bummed.
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Daniella, I do know what you are saying.. I don't think the Dr. In Clifton will give you the prescription for the EMLA cream. Call MSK and have them call it into your pharmacy. The day after installation it will be very sore and you will definitely need some relief! Tell the Dr. that they plan on using it the next day because he put mine directly under the incision and with the glue and steristrip on it there was little room for the needle. Mine was three days after so the steristrip and some of the glue had fallen off by then. Put a good size blob of the EMLA all over it cause you don't know where she's going to stick it. Then cover it with Saran Wrap or press and seal to keep your clothes clean. An hour before is not too much time! She will swab it with alcohol anyway. The next infusion will be much easier after the port heals some.
My issue seems to be with the steroids. Last night I was awake all night again. Had a cup of tea with honey and my face stared swelling. I felt as if I had a 104 degree temp, arms, face, legs burning. My actual temp was only 97.1 degrees. I kept a cold cloth on my head and drank a bottle of water each hour then peed it out and started the next one. This AM called the nurses and she told me I was having an allergic reaction to the steroids but would be getting the same amount of it on Monday (?) what's wrong with that picture? She said if they didn't give me the steroids I would be vomiting so they need to continue it. I am so bummed.
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I want to say a huge THANKYOU, to each and everyone one for sharing your ongoing stories and experiences. I am just starting on my own journey. This past month has been so crazy. I had my first of twelve Taxol/Herceptin treatments this past Monday. I had a port put in yesterday, my veins are hard to find and I bruise easily so I'm sure this was the better option for me. The area is still sore but not so bad as yesterday.
When my oncologist explained my treatment plan the initial thought of chemo terrified me, as I watched my mom and sister both go through chemo treatments. I saw how hard and horrible it can be with the really harsh chemo's out there. I wish this would have been a treatment option for my mom in 1999, when she was first diagnosed sadly it came back and she lost her battle with BC in 2005. I have to keep reminding myself how lucky I am to have these new treatment options and how things have changed for the better. I have a lot to be grateful for and will get through this. It seems so strange to be on this cancer journey myself. I was really hoping to only have to do radiation, but the "triple positive" changed that option. Well, I guess we do what we must to beat this crap.
I do have a few questions, what is "Cold Capping"?
Also for those still working, have you been able to work through treatment. If you had the opportunity not to work through some or all the treatment would you take the time. Is it better to stay busy? I worry about getting too tired from difficulty sleeping as I have had problems even before this with getting to sleep. Just not sure what to expect and I know its different for everyone.
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Welcome myturn44 - you will learn a lot from the women here. Cold capping refers to cryotherapy scalp treatment to prevent chemo induced alopecia. The cold caps freeze the hair follicles so they constrict and prevent chemo from going to the follicles. You can find more info on the cold cap thread on the message boards. I'm using the cold caps. It's not about vanity - it's about maintaining my privacy, sense of normalcy for me and my family. Good luck!
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Welcome Myturn to the forum I wish you didn't have to join. We will all help you get through your journey. You will hear plenty of stories. We all have different se's, but they really aren't terrible. The weeks actually move quickly. Good luck to you and God bless.
Nancy, please call your MO first thing in the morning (even leave a message this morning for her) and let her know the reaction you are getting and follow up on Monday morning. They put together your prescription when you check in and if your MO changes the prescription for the steroid, the pharmacy "has" to change the prescription. It is not up to the nurses! If you have at least 3 or 4 infusions under your belt, you should be fine if they lower you a few mgs. Mine was lowered. They must be confident that you wont have a reaction to the taxol, that's all. Good luck!
Ladies, just to let you now that I just finished 2 weeks of radiation. I have 6 more to go! Just a little pink (which I was before I started lol). I put Eucrin when I get home from radiation and the script the Dermatologist gave me at night. Before I leave for radiation, I shower so there is no residue of cream on my breast. Good luck when you get this far! It comes quick.
Blessings to all!
Mary
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Ladies - FYI, I changed my user name to my "real" name, Marie. When I joined back in June, I thought it would be best to use a nickname. I was named after my grandmother, Marie and they called her Mary. I thought it would be cute to use her nickname, but I'd rather use my real name . Sorry if I'm confusing you gals.
Love and blessings to all.
Marie
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Good morning, everyone!
Myturn, welcome to the group. I'm sorry for what brings you here but very glad you found us! You can come here no matter how you are feeling, even if you just need to vent. We are all at different stages of the process, but there is an amazing amount of caring and support here. I'm sorry that your mother and sister both had to go through tough rounds of chemo, and am so very sorry that you lost your Mom. We do have a lot to be grateful for now that the Taxol/Herceptin protocol is becoming a standard of care for early stage Her2+ BC. So one treatment down, that's great. The weeks really will go by quickly and I hope your side effects are minimal. As far as work is concerned, I am finding that the fatigue has gotten more pronounced now that I am in the second half of the 12 weeks. I've been working a part time schedule but am very tired when I get home. There have been days when I took a two hour nap and still slept completely through the night, too. When I started someone advised that they would have worked more in the early weeks and taken more time towards the end and now I have to agree. I'm happy when I am working and the focus is on the job I love so there is definitely a plus side to staying busy. I hope you will be able to find a good balance.
Nancy, I agree with Marie. Please call your doctor and let him or her know exactly what is going on. I'm sure they can make some adjustments so you do not have to suffer. Docs are always saying that they don't want me to have any pain and to make sure to call with any concerns. That goes against my normal "tough it out" attitude but I'm changing that. I'll be thinking of you tomorrow and sending hugs. May #2 be easy on you! I hope your shoulder is feeling better, too.
Daniella, I'm glad you are managing your side effects. I don't know how well I would manage if I had a little one to chase around. You are remarkable! Many good thoughts will be coming your way this week when you have your port installed and on treatment day.
Marie, it sounds like you have a skin routine that is working well through Rads. I'm so glad for you. After the rashes and neuropathy you experienced through chemo it is time for smooth sailing for you! How are you doing on the Lyrica? I know you've got a follow up appointment later but have you noticed any improvement yet? By the way, I love your real name - it is my middle name.
Side effects have not been bad this week. It is more of the mental side that is getting me. I've been doing a good job of being positive and just dealing with what is in front of me. But now that I'm moving towards the end of TH and getting closer to Rads, I'm starting to feel stressed about how I will be able to work through that schedule. I know I have to do just what I did with chemo - "let it go" (yes, I'm singing that song again!) and do the best I can.
Sorry for the massive post, but I just needed to reach out to all of you today! Have a wonderful weekend.
Sandy
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Hi Sandy,
I have to say, I am seeing a tidbit of improvement, but I'll take any improvement! LOL I'm not on it a week yet and on only 50 mgs twice a day. It's a lower dose of the scale. Hopefully, but the time I see him on Nov 3rd, I'll have a bigger improvement to report! Thanks for asking!
Hope everyone is enjoying their weekend. Here in NJ, I'm waiting for the rain to stop so I can get to do a little shopping.
Marie
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Thank you Sandy for your kind words and everyone's thought and prayers.
I'm so worried about this whole port placement. Is it true that you are restricted from picking up anything over 5lbs? My daughter is at least 24 lbs! I can't avoid picking her up -especially since she refuses to walk on her own.
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Daniella, what did you do when you had your lumpectomy? It's kinda the same thing. You have to be careful for a couple of days and let some other person pick up your sweet bundle.
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After my lumpectomy I picked up the baby and went jogging the next morning. My surgeon, Dr. Capko, is a super star and I have a pretty high tolerance for pain. I hope it's the same bc I really cannkt have someone available to pick her up all day for every little thing. Thanks Nancy!
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Daniella, sorry to hear about the port. I empathize with your tiny veins. Mine are similar and my arm (left only) looked pretty bad by the end of T/H. Hang in there and keep your eye on getting done before your 40th bday. Let us know how it goes.
Myturn, welcome. I also had T/H and am now on maintenance Herceptin. I worked full time throughout and managed pretty well until treatments 10-12. Then I needed rest breaks during the day on some days and finished up my work in the evening. I also found that exercise helped with the fatigue and nausea management.
I had an echo recently and my LV ejection fracture has dropped from 68 to 50 and I now have an effusion, too. My MO is pretty concerned... I still have 11 rounds of maintenance Herceptin to go and she is worried I won't be able to finish. So now I'm getting echos every 4 weeks. If it's not one thing, it's another. I know how badly I need this drug but at the expense of my heart function?? Ugh.
Best to all.
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Well, week 2 of 12 is DONE!! The Port worked wonderful, one less thing to stress about, which is great!! I was tired of the bruising with each poke... I got a prescript for the EMLA cream and picked up some B6. Thanks for the tips, I had a list of questions to ask nurse today and she explained what I needed to know!
I am heading back to work tomorrow, after 3 weeks off. I am very tired tonight but hopefully it wont be bad tomorrow. I want to work if I can to stay busy and I keep moving. I am lucky that if I need to take time off later I still can. I don't plan to work the day of treatment. How do you keep from thinking every ache or twinge is a SE? Another reason to keep busy I guess, so I don't drive myself crazy with overthinking.. I am the Queen of over thinking!
-Daniella, I wasn't told of a lifting restriction with my port insertion last week, but I don't think I could have lifted much more than my purse the day of the surgery. My lumpectomy was a piece of cake compared to the Port. But I would still have done it as it made everything 10x easier today, I just wish they would have prepared me for how many muscles are sore afterwards. I don't want to scare you, but a helper might be a great idea for your little one at least for the first day.
Marineswife, thanks for your feedback, I hope things improve on your Echo's. Sending prayers your way.
Take care all!
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Hello all
I am joining you on this journey starting tomorrow. I get my port placed tomorrow and get my first chemo treatment.
I have been lurking around in here and reading and you ladies definitely make me feel better about the side effects. My biggest fear is the neuropathy. I do plan on working through my treatments if I can. I just went back to work in January so I don't qualify for FMLA and I am out of time off
hahaLaughter keeps me going through the day, it's the best medicine I have found.
What are your can't live with outs for your chemo bag?
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Port went in today and was super easy. I'm trying not to lift the baby but even when I did lift her a little, it was ok. I feel a little pulling sensation in my neck but that's it. Doctor put it on my right side even though I had my lumpectomy on that side. I took some Tylenol this morning after the surgery and haven't had any pain. My only issue was I had a mild allergic reaction to the surgical wash and itched like crazy. Tomorrow is #6 - halfway there!
Anyone getting night sweats? Started after my last infusion. Also, my mouth tastes like pond scum. I've gargled with just about everything with no relief. So gross.
Hope everyone is doing well! Good luck tomorrow kerensa75!
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Danilella, I am SO, SO, SO, glad it went well today! Even though you CAN lift that baby, please don't over do it! Reaching the half way mark feels so good. You are sliding into the home stretch.
I am post menopausal and haven't had night sweats in a long time. Hoping that nothing will trigger them to come back from all of this! I get the bad taste in my mouth too. So far the Biotene toothpaste and mouth rinse are helping with that. I long for the day when coffee will taste good again though!Kerensa, welcome. Good luck with the port placement and your first treatment. I had my first chemo the same day the port went in, too and it worked out fine. Since I had anesthesia for the port, my medical proxy had to give the okay for chemo to be given right after surgery. Will be wishing you minimal and manageable side effects. So far, no neuropathy here. On my doctor's advice I take L-glutamine powder and B6 supplements to try to avoid or minimize that side effect. I just had treatment #9 today and so far so good. I'm with you on the humor, too. It definitely gets me through. My user name derives from my love of the classic show "I Love Lucy." I start every day with an episode or two so I always start out laughing. I'm also known to see the dark, inappropriate humor in all of this! As far as the chemo bag goes, I bring my iPad, my lap quilt that was made for me by a local quilting guild, a few snacks (although my center provides some drinks and snacks), antibacterial wipes and gel, bottles of water. Also a binder to put my lab results in, paper and pen for questions to docs and nurses. Also throw in a craft project that I have not touched in 9 weeks! The premed Benadryl makes me so sleepy that not much actually gets done. Good luck with work. I am working a reduced schedule but glad to be working. The fatigue has gotten a little more pronounced now that I'm on the end of the 12 weeks but I am in a job where I can set my schedule and work from home, too, so I'm managing just fine.
Super sleepy when I got home today, so I took about an hour and a half nap. I set an alarm so I wouldn't sleep too long and pushed myself to get out of bed to do some business calls and emails before 5 o'clock. I have a wonderful friend/neighbor who insists on bringing us dinner every chemo Tuesday night. She just dropped off a wonderful smelling chicken dinner. I am so blessed!
Hugs to all and good wishes for a great week!
Sandy
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Marineswife, sorry to hear about the change in heart function. Good luck with the ongoing echos. I will be praying for you! I'll be having my three month echo in a few weeks. I'm a little apprehensive about what they will find since I had a slight dysfunction on my pre-chemo testing and they were debating putting me on a heart medication. UGH, is right!
Myturn, congrats on #2! So glad the port is working well. I am really glad I got one. There have been two times when nurses had a little difficult accessing it so they decided to use the longer needle to get access. From then on, no problems. Good luck with work. I also smiled at your question about wondering if every twinge is a SE! The first two weeks I wondered about everything! Oh, do I have pins and needles in my foot from neuropathy or because it was in a weird position, is my headache chemo related, etc, etc! I have also been know to (been accused of!) overthinking things. It got easier to lighten up as the weeks went on. It has gotten easier to know when to call the nurse or doctor when a new SE or problem comes up. You'll figure it out!
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Treatment #6 done. On my way into the home stretch. The port incision sites were definitely more sore last night - maybe from being used or from overdoing it, as usual. i showered last night and the water hitting the incisions was super painful. Drs said I coul wash, so not sure why it was so painful. I just rinsed the sites, no soap. I'm going to call the surgical center and see if this is normal just to be safe.
No sleep again last night. My onc offered me ambien and I declined. Now I'm second guessing my decision. I'm up all night sweating, freezing, going to the bathroom, reading...that's on Ativan! I have to start sleeping I'm the guest room because I'm keeping my poor husband up every night. Ugh!
Thank you everyone for your suggestions, thoguhts and prayers. You are all in mine, as well.
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Well I had my first chemo session yesterday and had my port placed.
Everything went great until 15 minutes into my Taxol...I had an allergic reaction. I couldn't breathe, my blood pressure skyrockets, heart was racing, face turned bright red. It was SUPER scary! They waited another 30 minutes and restarted it and I was able to take the rest of the bag. So I hope this means I am past that happening again.
Today my arms feel strange, like they are asleep/numb/heavy to lift. I have called my Dr.s office and just waiting on them to call me back.
But on the bright side, 1 session down only 11 more to go!
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By the way, can I just say I am very confused about Taxol and hair loss. My Dr. says he doubts I will lose my hair, but everything I read says I will. I am fine with it either way, I just would like the opportunity to plan a little better. I don't want to just wake up one morning and wish I had planned better.
Does anyone else know any more than I do about this?
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Kerensa, do you think your doc was trying to say you won't lose ALL your hair? I am on weekly low-dose Taxol, and was told I would probably lose 50% of my hair - and I have.
My understanding is that virtually no one keeps their hair on Taxol. But it doesn't fall all at once, so you don't have to make any rash decisions now
You can wait and see how yours goes. If your hair is very thick, you may able to ride this out without shaving or even cutting. I was not able to, but am not completely bald, either. After week three or so, I started periodically running my fingers through it and gripping slightly, to see if anything shed. At about week five, it did. Over the next few days, I could pull more and more, and feel the occasional falling hair hit my neck or shoulder. BARF.
At that point, I buzzed it to 1/2-inch and immediately felt less gross and unhygienic. I still do have hair but it is so thin that I am keeping it buzzed even shorter for now.
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Kerensa,
I was on the Taxol/Herceptin and my MO said my hair would thin. I had short hair already so I waited to see what would happen. After the forth treatment my hair started to come out lightly, evenly all over. I bought a wig and did end up wearing it often. My hair did not come out in clumps like stronger chemo can do. I was able to wear a baseball cap and look okay for quite awhile. If you have long hair now I would recommend a short haircut. I never shaved my head but I did lose all but some fuzz.
So, I would say get a short haircut and wait and see. I didn't wear scarfs and they didn't look good on me so a wig was best for me. I am now 3 1/2 months since last Taxol and my head is covered with hair about 1/2 inches long so I still wear my wig when I go out. Other women don't mind going 'topless' but at 70 I look so much older without my wig.
Hope your treatment goes well.
Dee
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Well, I went back to work full time on Tuesday after my second treatment. I came home Tuesday night and went to bed at 6:30pm. Left work early on Wednesday with a really upset stomach, got sick when I got home. I have felt anxious and crappy all week. I don't know if I'm stressing about work or fighting a cold or if just the reaction to treatment. What a week... I hope this gets better, I feel like such a whiner. It makes me so mad that before all this I felt absolutely fine and now I have to go thru weeks of treatments that makes me feel sick, just so I can be "Cured". So frustrating.... Of course, I will do what is needed to make sure it doesn't come back but it just ticks me off. Yes, I'm in a crappy mood.. Ok, I'm done venting... Sorry all, its just been one of the those weeks... At least tomorrow is Friday. This weekend should be good though, as its my granddaughters 3rd birthday. Happy thoughts, Happy thoughts............
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Myturn, this is the place to vent! No kidding, this can really suck at times. No sooner is your body trying to heal from the insult of surgery, than it starts getting poisoned. And the mental aspect alone can be overwhelming. It is just a LOT to carry sometimes. My main thing these days is fatigue, and is making me a little depressed. I am so grateful to be able to come here, where people understand.
I hope you can recharge over the weekend. Happy birthday to your granddaughter! I just became a grandma myself, to identical twin boys, and being around them is a real mood-changer
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Hi! I have a question about neurapathy (I know I butchered that spelling, lol). Last Monday was taxol #9, I have 3 more to go. This Monday's treatment should include perjeta and herceptin. I just got off the phone with my MO's PA, explaining to her how the neurathapy was pretty bad this week on Wed & Thurs. She said she needs to speak to the MO, but she is thinking they will hold back on this week's infusion. I don't want to delay my treatments, counting down to the end here but I am also concerned about missing my P&H as well. Anyone here skip a week because of this?
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Hi Ladies, hope everyone is feeling well today!
I am getting confused as I post on this forum. I have to keep straight who is on which topic! I asked Daniella how she was doing on "starting chemo October" duh! Daniella, hope your port is feeling a little better each day!
Marie, have you started to feel tired or any other side effect from the radiation?
I did request they change my concoction and the nurse said no but the Dr. did reduce the steroid and replaced the Benedryl with something else. The something else sedated me! I slept in the chair, in the car home, four hours in bed, up to drink water then eight hours back in bed until morning! It was the most sleep I have had since August! I go for my third infusion tomorrow. I will ask if they could lower the amount of the "something else" by just a little! Thank you guys for telling me to ask them to change my pre-meds, I would have just suffered with it the way it was!
Being tired is my main side effect, heartburn second.
Thanks for all your help! I know this forum is helping me through this ordeal!
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Nancy, I'm so glad to hear that the med adjustments helped! You have been through a lot in recent months so your body must have been happy to get all that rest.
Fatigue is a big SE for me, too, and I look forward to a day sometime in the future where I really feel well rested!Karensa, my doctor said I may get away with just some hair thinning but my chemo nurse said I will lose so much that I will need to cut it off. I finished 9 of 12 and although I've lost about half of my hair, my head is still pretty much covered. (I had a lot of hair to start off with.) I'm trying not to get too excited about that since some people posting here reported losing their hair toward the end of the 12 weeks. Have not had to wear my wig yet but may start wearing some scarves as headbands to disguise my widening part. Best of luck with your treatments. Glad you are here with us!
Basia, I have not experienced neuropathy so can't help with that but wanted to send good thoughts your way. I hope they won't have to delay treatment.
Myturn, hope you are feeling better but I'm glad you are able to vent here. I agree with Tabbygirl, this is the place to do it among people who really get how awful it is to go through all of this! Get it out, girl! Enjoy those grandbabies both of you!
Have a great weekend everyone!
Sandy
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Nancy - I'm in a constant chemo fog and can barely remember where I'm at lately. My port implantation went well. It's just really sore and uncomfortable. Of course the baby manages to kick me in the port at least once a day while changing her diaper. Mostly sore also from the antiseptic surgical wash which left me with burn like a sunburn.
My SEs were the same this week although much worse. I think it may have to do with the fact that I'm getting very little sleep or at least very little quality sleep. Between the night sweats and headaches it's impossible to be comfortable for long. My only new SE seems to be bouts of dizziness. Anyone else feeling dizzy? I'm drinking tons of water so it's not dehydration.
Myturn we all feel like that everyday. It's ok vent here because other people just don't get it. My husband thinks because I'm not hanging my head over a toilet and bald (I'm cold capping) that I'm fine. He just doesn't get it. It's so hard not to want to do him bodily injury when he gives me a hard time some days....lord give me strength!!
Hope everyone is doing well. Love and prayers to all!
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I've only had one session of Taxol so far and the SE's are craptastic!
Constipation already, muscle aches, he rounds from constipation, headaches, my taste buds were gone for two days but are back now. My chemo was Wednesday. I didn't expect t to have so many SE's so fast. Is this normal?
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