Who has started herceptin and taxol regemin in October 2016?

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  • Whistlestop
    Whistlestop Member Posts: 45
    edited December 2016

    A morning reading I wanted to pass along ........ it's all about perspective. We are warriors and are victorious. Terry ( aka whistlestop )

    Monday, December 26, 2016

    Everything is an opportunity

    By Ralph Marston

    Whatever happens, you can make the best of it. Whether others might judge it to be good, or bad, inspiring, or debilitating, you can move positively ahead because of it.

    Events and circumstances matter, but not nearly as much as what you do with them. When you so choose, everything is an opportunity.

    You don't have to wait for life to deliver inspiration. You can be the inspiration, right now, right here, any time, any place.

    Instead of responding to a disagreement as a conflict, you can respond to it as an opportunity for understanding. Instead of responding to a setback as a tragedy, you can respond to it as an opportunity for massive progress.

    Yes, you can, because you are able to focus your attention in whatever direction you choose. You've done it all your life.

    Your attention is your choice and ultimately, your attention is what matters. Choose wisely, deliberately, and choose a great, fulfilling life.

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited December 2016

    On Wednesday, I had my first infusion of triple strength herceptin over 1 hour. Thankfully, I had no side effects. I've stepped up my cardio exercise, hopefully keep that heart muscle strong. Next Thursday, I go for tatooing, etc, and start radiation a week later. Wishing everyone the very, very best 2017 as our journey continues!

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  • kmk40
    kmk40 Member Posts: 42
    edited December 2016

    I had my first Taxol and Herceptin infusion on Tuesday, 12/27/16. I had the common infusion reaction with the Taxol, but they stopped the infusion for 30 minutes and then resumed it at a slower rate and I was fine. It did make for a very long first chemo day, I was there almost 7 hours. I'm hoping for a significantly shorter day next week! I've felt a little tired and off the days since the infusion, but today I went to work (Day #3 after chemo) and am doing pretty well. A little foggy, but I don't feel nauseous or too fatigued. I hope everyone has a Happy New Year, and here's looking to a positive 2017 as we all continue this journey!!

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited January 2017

    Had all my preliminary work done today..body mold made and chest tatoos. First radiation is next Tuesday. Next herceptin is 1/18. Hope my fellow sisters are doing well!

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  • kmk40
    kmk40 Member Posts: 42
    edited January 2017

    I had my #2 treatment on Wednesday. It went well, no infusion issues with the Taxol this time. I guess I had a mild reaction the first time, I can't imagine what a major reaction would be like! I actually feel better this week, possibly because the Herceptin dose was doubled last week as a loading dose. We'll see. So far so good, but just waiting for the hair loss. I hope everyone is doing okay!

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  • Whistlestop
    Whistlestop Member Posts: 45
    edited January 2017

    Good to see everyone's updates ... kmk40things were better on the 2nd . Germangirl1…. ...with my last full Herceptin,, taxol done 12/23... Counting Down ( Here's a photo from last Friday..note the name of my Chemo room.... I have been documenting the entire journey )

    I finish CHEMO just days away...Taxol this upcoming Friday the 13th Jan. ..... . Is this what you are now doing... Herceptin only? You mentioned a triple load. I understand I am to have Herceptin infusion every 3 weeks . Will met with Onco Fri. after ringing the bell to check out the Herceptin maintenance plan and next steps.

    Great news, the ultrasound last week, revealed a clear axilla node, and the former 3.75 cm tumor area inside a 6cm fatty cyst is now barely 1 cm. Hopefully reduced to confirmation for surgery 2 - 4wks after chemo's end. .... Ready for phase 2 and a "perkier pair".

    Feeling more accomplished on work items , so feel it must be the light at the end of the Taxol tunnel.

    Happy 2017 and ready to ring the bell and do a little "Dancing Queen" via Abba's serenade

    Terry ( aka Whistlestop )

    imageimage

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  • kmk40
    kmk40 Member Posts: 42
    edited January 2017

    Yaayy Whistlestop! I know you're ready to ring that bell. KB870, I've not had any issues with an aura nor have I heard of this. Good luck! Germangirl, good luck with radiation. Can't wait to hear how that goes, as it's next for me after chemo.

    I go in for treatment #3 tomorrow. So far just fatigue and few other side effects. I was able to go to a friend's baby shower and take down all our Christmas decor this weekend. I noticed a few extra strands of hair coming out this am.... but I'm prepared, as well as I can be.
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  • kmk40
    kmk40 Member Posts: 42
    edited January 2017

    My #3 Taxol and Herceptin was today. My hair is starting to fall out, not in clumps, but I'm scared to wash my hair! I noticed the glutamine mentioned earlier in this thread. 10 grams. Is this to prevent peripheral neuropathy? I'm ordering tea tree oil for my nails. Is there anything else anyone recommends. Amazon prime is my friend :-) Hope everyone is having a great week!

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited January 2017

    Yes, glutamine 10 grams 3 times a day. It's a powder you can mix in a little juice. Vitamin b6 100mg also; both help prevent neuropathy, as well as icing during taxol.

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  • kmk40
    kmk40 Member Posts: 42
    edited January 2017

    Thank you, Germangirl16

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  • kmk40
    kmk40 Member Posts: 42
    edited January 2017

    Hello everyone!

    I had my 3rd round of taxol and herceptin yesterday. It went well. Just #9 more to go!

    Monday I noticed a lot more shedding than usual. I refused to wash my hair yesterday, as I knew I would be getting chemo and couldn't deal with what would happened when I washed. Today, I finally felt I had to wash it, my scalp felt itchy, and it was coming out in huge strands. I covered the shower drain so it wouldn't stop it up! So I went and got a 2nd wig that is more similar to my current style. I need to make the call to my hair stylist to cut it shorter but I'm procrastinating! Wish me luck. I guess it's time to bring out the book I bought to share with my 8 and 6 year old daughters about my hair loss :-) I was hoping it wouldn't happen until after treatment #4 but I guess it's different for everyone. I am thankful I'm not having any other side effects, at least that's my perspective for now. I hope it continues! I hope everyone is having a good week.

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited January 2017

    Hey, if hair loss is your only side effect, you're doing great!

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  • ksolo11
    ksolo11 Member Posts: 11
    edited January 2017

    I am so relieved to find this blog ... I started the herceptin and taxol regiment on December 1st - so just completed treatment #7. While I feel great, I know the effects are cumulative and if I do too much, I feel exhausted by the end of the day. The worst part for me has been fearing full hair loss. I have made and cancelled several appointments to cut all of my hair off to take control of the shedding, but I can't bring myself to do it. I have very thick hair and while it's greatly thinned out now, I am reading some of these posts and it does seem not everyone loses all of their hair. It is thinning a lot on top though and I am worried it will fall out in clumps so I have a hat with me at all times. Has anyone had hair come out on top but stay around the crown? Has anyone had it come out at an inopportune moment while in public? And kmk40 - I only wash my hair once a week at this point. And no one is allowed to touch my head (friends, husband, kids.) Thanks for any input and have a good weekend.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2017

    Ksolo11-

    Welcome to BCO! We're glad you've joined us, and hope you find the support you need on these boards. Lots of great info here, and knowledgeable and welcoming members who can guide you and offer their insight and experiences on what you're going through!

    The Mods

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  • kmk40
    kmk40 Member Posts: 42
    edited January 2017

    I had a lot of hair and it was falling out so much after week #2, that I just cut it short into a pixie. It's still falling out but it's manageable now that it's so short. I'm wearing a wig or hats when I'm out. I've never had short hair, so it's a shock for me. And it's so cold in Colorado! If you've made it to week #7, I'd wait on cutting too. I waited until the last moment!! Good luck ksolo11!!

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited January 2017

    Starting my 2nd week of radiation, plus I have my herceptin infusion on Wednesday. Hoping my body handles the double whammy! Starting to feel some hair stubble sprouting, yeah!

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  • kmk40
    kmk40 Member Posts: 42
    edited January 2017

    I go in for treatment #4 today. Got in my B-6 and glutamine and started that to help prevent neuropathy. I'm still dealing with tons of shedding but otherwise feeling really strong. Scalp is a little itchy but Cetaphil lotion seems to help. Anyone have any other tips?

    Yaay Germangirl16 for hair stubble!! How long did you wait between chemo and radiation? Are you extremely fatigued? Everyone have a great week!

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited January 2017

    Hi Kmk40! Last taxol/herceptin was 12/19, started rads on 1/10. So far, no fatigue or skin issues. I keep rubbing my head just to feel my stubble! Am also using rogaine, and rosemary oil, and taking my biotin. Good luck on your remaining treatments, and hope everyone has a good week.

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  • Whistlestop
    Whistlestop Member Posts: 45
    edited January 2017

    Good Morning all.....

    Glad to report I rang the bell January Friday the 13th. Looking forward to return of some of my lost energy level. Did celebrate with lunch at the bayfront w/ beau, a Sat. sleepover with daughter & granddaughter, and an intimate concert featuring Michael Martin Murphy....... but now find some "funk" hanging around these last days...Monday and Tuesday. Did walk Monday only to come back to nap for 1/2 hr. Awaiting BRACA results and met with surgeon on Tues/24th. Looking forward to an end of February ( post surgery ) cruise with beau. Tropical rest and recoup time.

    Anyone who's finished enlighten on energy return after Taxol completion ?

    Congrats Germangirl16 on stubble ! Appreciate the tips. I thought my buzzed hair looked a little longer, promising. Been bolder about just sitting out without headcovering...

    Terry ( aka whistlestop )

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  • Tinyfrog
    Tinyfrog Member Posts: 91
    edited January 2017

    I am happy to see this thread is still active. I have my chemo class tomorrow with echo, most likely getting port next week, and then starting taxol and herceptin for 12 weeks (then every 3 weeks for the year). Can someone explain what the steroids and benadryl are for? All I see in my MO notes is: "will minimize steroids as much as possible."

    My MO said I was getting chemo light, and after I was imagining a walk in the park, was later told about the port and to expect hair loss and nausea. I was pretty nonchalant about the first two surgeries (tumor, SNB), but for some reason I feel sick to my stomach about the port, even though I've read most people have positive experiences. The idea of putting something in hooked up to my heart for a year really scares me, when taking something out didn't at all.

    I have long fine dark hair, that I color some roots for white. I am 46. It seems as though some people have been able to keep their hair, and some not. Is it better to just cut a bit shorter for now, and see how that goes? Does a cold cap help? (I need to read up on what those are actually)

    I've seen recommendations for B6 and glutamine? And some various moisturizers? And to ice hands or something like that during chemo?

    I've heard some recommendations to ask for a longer drip - like 60 - 90 mins? How long does it usually last? And am I missing something when I see people mentioning like 6-7 hours? Do you take a nap there?

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited January 2017

    Welcome tinyfrog! You will find lots of resources and help in this and other forums. I laugh when they call it chemo light (my MO did also). It is very doable, but there are still side effects, mainly hair loss from the taxol. I think we are all hoping we'll be one of the lucky ones who doesn't lose her hair, but unfortunately, you do. Mine started shedding after my 3rd infusion. I had it cut very short ( not buzzed) before I started chemo, so it was easier to deal with when it started falling out. Another common side effect is neuropathy in fingers and feet from taxol, hence, the icing of hands and feet during taxol infusion, plus taking powdered glutamine 10 grams 3 times a day and vitaminb6 100mg daily. The icing also helps prevent nail loss (they turn black and fall off) plus wearing dark polish on your nails at all times has helped many. The port is a good thing, don't worry about it. I always feel sorry for those I see getting stuck every week, and having trouble finding a vein, etc. The port is the way to go. Typically, my herceptin infusion took 30 minutes, and taxol ran 1 hour. Your first infusion runs longer to make sure you have no reaction. The banadryl and steroud took 20 minutes, prior to starting. I never had any reaction, and asked the nurses to reduce my steroid dose, which they did for all the remaining infusions. Many people get sleepy from the benadryl and actually sleep during treatment, I never got sleepy. I would read, or listen to music, especially while I iced my hands and feet. I felt very fortunate, as I never got any neuropathy, had no gi symptoms, never lost my taste, and no fatigue throughout the entire 12 weeks. Just lost my hair, and both my red and white blood counts went way down, but never had to have that treated with transfusions or neulasta. They will check your counts every week prior to your infusion. Good luck to you, and please let us know how you are doing. Keep a positive attitude!

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  • Tinyfrog
    Tinyfrog Member Posts: 91
    edited January 2017

    Germangirl16 - Thanks you for taking the time to address my questions and for sharing your experience. I had a long afternoon with the chemo class, echo, and waiting for the blood draw. The nurse that went over the chemo was really nice, but she seemed to think that most of my mentions around side effects were a bit exaggerated, specifically hair loss and neuropathy. I would love to believe her, that it's uncommon with this "milder" treatment. Perhaps it's relative, given she's seen so much worse with those on heavier chemo, but it seems as though on this site, those that experience thinning are the lucky ones. Having looked up cold caps, I don't think I can afford them, nor what looks like intense effort to ice and change them. And I'm always really cold already, so that would be hard. Did you use them? How did you ice your hands? And feet too? Your description of nails turning black and falling off reminds of my big toe after running a marathon. Thanks, I'll look up that O'keefe product. I have the port apt next Wed - 25th, and the first chemo the following Wed, Feb 1. I think the chemo apt was slated for 4 hours, so that sounds in line with what you said about it being longer, and perhaps I'll get observation. She explained that the steroid and benadryl were to prevent allergic reactions and hypersensitivity. I'm going it alone, but she said I had to have someone drive me home the first time. Did you have people coming with you, or driving you? You said you asked them to reduce your steroids - are they bad for you, should we all try to use as little as we can bear? Or does it just shorten your chemo sessions by the 20 mins?

    Are you a german girl that lives in Germany or in the States? I lived in Germany in 81-83 and loved it. I have a german minor, but haven't spoken it in a while.

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  • Tinyfrog
    Tinyfrog Member Posts: 91
    edited January 2017

    Hi KB870 - Thank you as well for your input. You're so funny - "I've ONLY lost 70%" when there's a 70% chance of rain, it usually rains 100%. :) How does that even look, when you keep 30%? Oh wow - you sound really, really active and in shape, and you're 62! That's incredible. Holy moly - 6 hours! I mean, I'm not working so I have no place to go, but I'm like a person who rushes around with no place to go. You sleep through the whole thing? Do/can you drive yourself home? I don't drink anymore because of circumstances, but if the Taxol is like Nyquil, maybe I'll sleep too. The MO office only uses ports; it wasn't really presented as an option at all. I mean, no one can make you do anything, so if someone refuses it, what can they do. But given that I have an Asian Tiger mom, I'm pretty much use to being bossed around against my will. :) Thanks for the cheers. So far, for me, it seems that things move so fast once you are told you have cancer, and there's not much time to process it as you're going to all of these appointments and surgeries. Every day there's a new appt showing up in mychart and I just go to things - it's pretty straight forward. I think when I get the port, and get chemo for the first time, it will seem real, and I won't seem as matter-a-fact as I have been so far (and will probably have a meltdown). It's been mostly intellectual with information gathering.

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  • Tinyfrog
    Tinyfrog Member Posts: 91
    edited January 2017

    Hi KB870 - Wow! You really have to work to get to your chemo - driving 1.5 hours! I'm only about 10 minutes away from the medical complex and hospital where all of my appointments are. I think Benadryl puts me to sleep, too. I have claritin for allergies, and I wonder if I can take that? You're life sounds amazing and so different from mine - growing veggies, hatching chicks, and raising turkeys. I'm going to have to look up where in Ontario you are. After postgrad I worked for a consulting firm for 2 years near the Toronto airport, and lived in Mississauga. Then I worked for a US firm, and was sent back to Toronto for a project with the same client, Nortel. Yeah, it's great timing to have the support system, your husband at a time like this - I hope it doesn't adversely effect other areas in your life (ie finances, health insurance, etc)

    Can I ask you if you felt the steroids helped at all, and if the side effects outweighed the benefits


    I asked point blank about this steroids thing to the nurse several times without a complete answer, and finally, FINALLY this evening - I find out that the oncologist has in my file not to give me any steroids, because of a false medical condition in my file that she had never even asked me about. And there are no medications in my file that are associated with that false medical condition. I am so absolutely pissed that she made a major decision in my treatment without ever discussing it with me. And I should have never even known about it or what was withheld from me based on erroneous information.

    Now I looked up the pros and cons of steroids. And many healthy people have had side effects like agitation and insomnia because it increases energy - so maybe I would want to minimize steroids anyway. But on the other hand, some have said it helps with their fatigue as well.

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  • ksolo11
    ksolo11 Member Posts: 11
    edited January 2017

    I just finished treatment #8. I had my doctor cut back on my steroid because I was agitated and had too much energy the day after treatment -- then crashed for two days. I am feeling much better now after the second time with less steroids. Overall, I feel pretty good and continue to do most of what I did prior to treatment. I am very careful not to be in big crowds where I can get sick and I ask everyone before I see them if they are healthy. I don't want to miss a treatment. The two side effects I am having are an exhaustion that has hit me just this week. The treatments are cumulative and I was warned around week 8 I would feel tired. The second is some hair loss. I, too, have thick hair but I have lost some. I don't know how to guess the % of hair loss, but for now, I cut my hair to my shoulders and only wash it once/week. I am glad I didn't cut it all off right away. Just take it one day at a time. We are all stronger than we think. I am here for you.

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  • Tinyfrog
    Tinyfrog Member Posts: 91
    edited January 2017

    Ksolo11 - Thank you so much for sharing.

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited January 2017

    Just thought I'd check in with everyone, and share my latest side effect. After keeping my eyelashes all through chemo, they decided to fall out last week. Looks so weird, trying to make up for the difference with eyeliner, but really miss them! On the positive side, my hair stubble continues to grow! Hope everyone has a good week. Today is #14/33 rads for me.

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  • Tinyfrog
    Tinyfrog Member Posts: 91
    edited January 2017

    Hi Germangirl16 - Thank you for the update and checking in. Sorry about the loss of your eyelashes. I saw that you finished your taxol/herceptin 12/19; can't believe the eyelashes gave out 5 weeks later! I wonder what the growth rate of eyelashes are? I am getting my hair cut shorter in about an hour. I waffled on whether or not to dye it as well (non-ammonia), as for why the spend the money if it's just going to fall out. But then again, maybe it won't, so I'll have root coverage for at least a month if it doesn't.

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  • Germangirl16
    Germangirl16 Member Posts: 97
    edited January 2017

    Hope you like your new short hair, try to enjoy it everyday, cuz you'll miss it should it decide to not hang on! I know, it doesn't seem fair that my brows and lashes made it all through chemo, and fall out now, but read that it happens around 6 weeks. Oh well, they'll eventually grow back! How many treatments have you had? I have my next herceptin next Wednesday. Do you have to have radiation also?

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  • kmk40
    kmk40 Member Posts: 42
    edited January 2017

    Hi everyone! I realized I haven't been on here in about 2 weeks and so much has happened since then. Mainly the loss of my hair. I had my husband buzz it with the clippers after treatment #4. It wasn't nearly as hard to watch as my first haircut into a pixie. I go in for treatment #6 tomorrow - half way done with chemo! I've been lucky that I haven't had a lot of side effects, just the hair loss and folliculitis on the scalp. My MO started me on an antibiotic for that today. He also gave me a sleeping pill, Ambien, last week because the steroids they give me for the Taxol had me up until 3 am after my treatment days, then I would crash the next day. It really helped having the sleeping pill. I've also started yoga classes and it's seemed to help with fatigue.

    Germangirl16, thanks for the info on the eyelashes. I like to prepare myself so I'm not upset and surprised when these things happen! How's the fatigue going with radiation? It's my next step after the chemo is done.

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