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Taxol and Herceptin only for stage 1 HER 2 positive?

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Comments

  • colleen1013
    colleen1013 Member Posts: 50
    edited January 2015

    Dear MarieNJ, you're such a sweetheart! I have read all your posts since page1, you have repeatly shared your experience and encouraged newcomers, hope that I will do the samething soon. I stay in NJ for two weeks and go to MSK for consultation and surgery, now it is time to go back to my family in CA. I will stay active in this group.

  • DaniellaD
    DaniellaD Member Posts: 228
    edited January 2015

    Boston - I've been on that treadmill feeling exactly the same way. You don't need to prepare for the whole battle, just prepare for what happens tomorrow. I know it sounds corny, but you need to only prepare for what is immediately in front of you mentally. There is no other way. I'm two months post chemo, halfway through radiation with a long haul of herceptin ahead. Recently I've been experiencing immense amounts of anxiety - to the point of panic for no reason. I think it's just now hitting me- the cancer diagnosis, chemo, side effects and a life less normal. My point, you cannot mentally prepare and worrying is like praying for bad things to happen. God bles

  • colleen1013
    colleen1013 Member Posts: 50
    edited January 2015


    I have a stupid question.....I came all the way from CA to NY MSK, before I left my BS arranged MRI for me, however MSK BS asks me not to take MRI as MRI reveals too many false information, MSK BS insists that there is only one tumor and mammogram/ultrasound are enough to rule out other places. As TH treatment is based on early stager no node involvement, I am kind of losing the faith to my body, is there any tiny spot < 1cm or DCIS, ILS, or whatever something not caught by mammogram/ultrasound ( I have dense breasts)? BS only takes one sentinel node, is this node really the only sentinel node? O.K. I am driving myself crazy.... I miss my kids terribly...

  • MarieNJ
    MarieNJ Member Posts: 183
    edited January 2015

    Thank you Colleen for such kind and warm words. Trust me, you will be advising newcomers.

    Daniella, I remember going through the crazies myself and it was not long ago! LOL Just a few months ago to be exact!!

    Once I was diagnosed with this dreadful bc, I was terrified. Every little ache and pain I thought was a sign of it coming back or something missed. Terrifying! In Sept I went back to my BS because I was experiencing dimpling on my breast. UGH!!! I looked it up on Dr. Google and there it was - a different type of bc! Both my husband and I were super scared. After seeing my bs, she reassured me it was just inflammation that will go away with time. Then a month later, I felt a lump under my breast. My MO examined it and said it was nothing. I felt great! After 2 weeks, I was feeling it continuously to see if it was getting any bigger and thinking WHAT IF! OH here we go - back to the BS for a second opinion. I thought she was going to toss me out the friggin window. It was once again - nothing.

    I always got my mammograms in April. After the lumpectomy the end of April 2014, my bs said she'll see me in April 2015 for my mammogram. I thought to myself - next April not sooner? Then reality set in and I thought, I went to MSK for their expert care. I'm sure they know what they're doing.

    I'm telling you....This diagnosis has made us all little hypercondriates. It may not be such a bad thing. We are all more aware than ever before of our bodies and became more proactive. If you are worried about something, bring it to the attention of your doctors. We have to get our regular check-ups with a complete chemical blood screening and live our lives.

    Colleen, if they thought you needed an MRI, you certainly would be getting one. You went to one of the best cancer hospitals in the world. You can trust their opinion.

    Good luck and let's all calm down........Stay warm!

    I have calmed down - you all will too.

    Love and Hugs,

    Marie


  • DaniellaD
    DaniellaD Member Posts: 228
    edited January 2015

    Colleen I'm at MSK too. I felt the same way - especially when I saw a woman on the boards who got a bone scan after her initial diagnosis was like mine. She found out she had Metz to the liver. That put me over the edge - I shouldn't even tell you about it. I told my MO and she said there is no reason for them to believe it spread anywhere else on me. The full body scan will just put me on a roller coaster of biopsies and scans for nothing. I'm praying that to is true. I feel rest assured that taxol is still the chemo you would get if it did spread. Although I'm not sure and fear every pain is cancer. It's most likely not.

    Marie- my crazies have turned into serious anxiet issues. My MO is making me see a neurologist for headaches but I need a psychologist because they are from anxiety! Ugh. I've never felt so out of sorts. I hope to get some control through exercise after rads are complete. Lord knows popping Ativan all day isn't a long term option

  • PatinMN
    PatinMN Member Posts: 784
    edited January 2015

    Daniella - I hate that mets story!  I know it can happen with stage 1, but it is rare.  I do feel somewhat reassured because the CT scan in preparation for my radiation was read by a radiologist who said there was nothing of concern in my upper body.  My RO said it wasn't unusual for the radiation CT to find something that needed attention.  So - yours must have been A-OK too!

  • DaniellaD
    DaniellaD Member Posts: 228
    edited January 2015

    Pat you're right. I have had a few CT scans during radiation and everything is clear. It's always that one horror story that sits in the back of your mind. I need to just say to myself, that's not me and I'm ok. I really need to work on being in the present. Thank you for reminding me. You're the best

  • PatinMN
    PatinMN Member Posts: 784
    edited January 2015

    Daniella - I had to block the Stage IV boards because reading them was so disturbing to me.  I think it will be a long time before I don't jump to the worst possible conclusion at every pain or twinge...  But the obsession does get better with the passage of time!

  • colleen1013
    colleen1013 Member Posts: 50
    edited January 2015

    Dear MarieNJ, thank you for sharing your experience, I believe that the first three years, we will have the same worries... oh....I already start to worry if I have unknown mets somewhere.....my period is late for two weeks and I am thinking about maybe ovary cancer or .....

    I went to my post-surgery appt today, and listed a couple questions regarding to mets (same concern mentioned by Daniella's post above), unfortunatly my BS has some urgent issue and I end up with talking with NR. However I got a chance to discuss this issue with another cancer doc in MSK. She makes it clear to me.

    The tumor what we have doesn't tell us the complete grow history, it may used to be bigger or even break through and enter our body at certain point of time you never know, our immune system keeps fighting the cancer cells, sometimes it wins and shrink the tumor and some time it loses and allow tumor to grow continuously, it explains why some bc cancer cells can be found in lymph nodes but not in its primary location "breast". Her2+ is sneaky, that's why we need chemo for systemic therapy. If your tumor size is really small, most likely it doesn't get the chance to break through the edge.

    May I ask Daniella why your 1cm DCIS is categoried as stage Ib? I thought that DCIS is always stage 0.


  • DaniellaD
    DaniellaD Member Posts: 228
    edited January 2015

    Im actually stage Itc bc I had a micrometastes of intra mammary node - not the same as internal mammary node. No, I was told dcis. Maybe I'm wrong but that's what my path report says.

    Edit - my mistake! Idc not dcis. My brain is fried.

  • Lunar19
    Lunar19 Member Posts: 1
    edited January 2015

    Hello Michelle,

    My diagnosis is identical to yours, her2 positive, no lymph node involvement. I had the partial mastectomy and sentinel node removed, clear margins. After consults with my team, we have decided to move forward on this new regimen of Taxol/ herceptin for 12 weeks, then herceptin alone for 9 months. The study results are encouraging but of course I fear the side effect of heart issues. I am healthy, athletic and I just had a MUGA scan to verify a healthy heart. Also just had the port inserted for the infusions. My start date is January 27. Have you started your regimen yet?

    Best to you,

    Lunar19

  • moderators
    moderators Posts: 8,637
    edited January 2015

    Lunar19, welcome to the BCO community, and thank you for sharing your experiences. Keep us all posted how things go!


  • MarieNJ
    MarieNJ Member Posts: 183
    edited January 2015

    Hi All,

    Here in NJ we escaped the Blizzard of 2015 - thankfully. My appointment yesterday in NY was at 2:45 pm. I called at 7:30 am to tell them if I come at that time, I just may get stranded there. They were so nice and told me to come in as soon as I can. My husband and I got there by 9 am and I was taken at 10 - Yay. I was back in NJ by 11:30 a.m. I know some of our Boston friends are getting the brunt of this storm, Please stay safe.

    In the meantime, I looked up this article and thought to post it for all of you to read. It's about Her2 and how far they have come. It is an interesting and encouraging article.

    http://www.lbbc.org/About-LBBC/LBBC-Newsletter-and...

    Stay safe and many (Hugs),

    Marie

  • SandyLovesLucy
    SandyLovesLucy Member Posts: 154
    edited January 2015

    hi Marie,

    I'm glad you were able to safely get to your appointment. I normally go for my Herceptin every three weeks on Tuesdays but this week I had been changed to Thursday. We got about 36" of snow here but we are plowed out now and I'll be able to get to the hospital tomorrow without a problem. Thanks for sharing the link to the article. I'm so grateful for Herceptin and for the other treatment options that are available to us now!

    Hope everyone is doing well. Hello to anyone new or those who may be reading and not posting yet. Many of us have done very well with TH treatment. Let us know how you are doing. :)

    Hugs, Sandy

  • colleen1013
    colleen1013 Member Posts: 50
    edited January 2015

    I hve not started chemo yet and I am keeping losing weight already ( maybe due to depression and lose my appetite). Have any one lost weight during the chemo? How to control the anxiety and depression

  • MaggieCat
    MaggieCat Member Posts: 315
    edited January 2015


    Colleen - I lost weight before chemo started, just didn't have an appetite, and was also anxious about what was to come. I calmed down once I was through the first infusion and gained a couple of pounds over the last 9 weeks. I'm feeling more optimistic at this point. I am back doing Yoga which helps me relax. I have a prescription for xanax /alprazolam (no longer need but did take 0.12 gm (1/2 tab) on my way to my first two infusions). Maggie

  • hgallant
    hgallant Member Posts: 4
    edited January 2015

    I have a question for those doing the Taxol Herceptin protocol. I had a reaction to the Taxol the second treatment. My MD is thinking of trying the Taxol again at a slower rate or switching me to Abraxane. Abraxane sounds so much easier however the study my tx is based off the women did Taxol, not Abraxane. Has anyone doing this protocol had a reaction to Taxol? Did your MD recommend trying again or switching to Abraxane? Thank you so much. It sounds so trivial as they are similar drugs but I feel like I should follow what they did in the study to ensure good results and to put my mind at ease that I will have a good outcome.

  • PatinMN
    PatinMN Member Posts: 784
    edited January 2015

    colleen, many (if not most) of us on the taxol/herceptin regimen found that we gained weight during chemo.  The steroid in the pre-meds seems to be the culprit.  I agree with MaggieCat - once you have your first infusion things should calm down for you. 

  • MaggieCat
    MaggieCat Member Posts: 315
    edited January 2015

    hgallant .... When I researched studies on taxanes in early December I found abraxane to have less SEs ---> since it isn't in an organic solvent. From Breastcancer.org comments - "Instead of a solvent, the paclitaxel in Abraxane is suspended in albumin, a protein, which may make it easier to take without the need for pre-medication." It is a more expensive form of paclitaxel. (Taxol is a paclitaxel.) Your MO will be asking your insurance to cover a higher cost for your treatment protocol. Do your own research. ( And if you bake, take your MO something special!!!). My 2 cents... Maggie

  • moderators
    moderators Posts: 8,637
    edited January 2015

    Welcome to BCO hgallant, glad you found BCO and its supportive members. We wish you the best with decreasing SEs.

    All the best, the Mods.

  • colleen1013
    colleen1013 Member Posts: 50
    edited January 2015

    Dear Patin and Maggie: Thank you very much, after reading your posts suddenly I feel hungry......

  • TTfan
    TTfan Member Posts: 162
    edited February 2015

    Liver enzymes up? Anyone have this problem on T/H? I am due for #10 tomorrow and my ALT is 96 and AST IS 63 today. This is the first time they have been abnormal. Wondering if they are likely to delay chemo. Hope not!

  • MaggieCat
    MaggieCat Member Posts: 315
    edited February 2015

    TTfan - Reading several studies, not unusual for elevated liver enzymes in the first 2- 6 months. One small study showed 58% for herceptin with a taxane. For T-DM1 my research nurse says will proceed with 2 - 3 times upper normal limit and begin to closely watch with possible reduction if 3x is seen again. Let us know what the approach is. Good luck! Maggie

  • hgallant
    hgallant Member Posts: 4
    edited February 2015

    Thanks MaggieCat. I think I am just nervous b/c it is not the exact drug that was used in the original study. I do know that 35 people in the study had reactions to Taxol but I am not sure what they did with those patients-it does not say. As I am the first person my Dr. has put on the Taxol/Herceptin protocol I am a bit nervous. I want to be able to finish chemo and feel confident that I did the best I could to prevent recurrence. I did try the Abraxane last week (thankfully my insurance has no issues with me switching!) as I reacted again to the Taxol, couldn't breathe even though they slowed the rate down and diluted it in 500 normal saline. It seems too good to be true, no steroids, much shorter infusion time...as long as it kills the CA!

  • TTfan
    TTfan Member Posts: 162
    edited February 2015

    Hgallant, I really wouldn't worry about the Abraxane. The active portion is identical to Taxol, only the solvent is different as Maggiecat said. If it wasn't so much more expensive than Taxol, they would probably be using it for everyone.

    Maggiecat, thanks for the information. The study protocol says to repeat the liver functions and delay chemo until they decrease to less than three times upper limit of normal. Since I was still a few points below that cut off, I was able to get chemo on schedule. I'm very happy, but still a little worried that they will go higher. Since I also had more nausea than usual, the MO thought the bump in enzymes could have been a short term G.I. virus rather than related to the Taxol. Seems like overly optimistic reasoning, but next week's lab tests will give a better idea. I just remembered now that I took NyQuil once in the week before the test when I seemed to be starting a cold and was very congested.. It contains both Tylenol and some alcohol so maybe that was all it took for my Taxol stressed liver to react. I definitely won't do that again!

  • Tree27
    Tree27 Member Posts: 6
    edited February 2015

    Did anyone receive radiation in the prone position instead of on the back ?

  • DaniellaD
    DaniellaD Member Posts: 228
    edited February 2015

    Tree- I had the Canadian Method which is an accelerated regimen done in on,y 4 weeks. I had 16 prone and 4 boosts on my back. You can check out radiation thread but it's really long and there are so many people with so many different treatments. If you're on this thread, that one may freak you out since many have later stage diagnosis. That might just be my internal crazy talk that can't handle it.

  • sweetbanker
    sweetbanker Member Posts: 14
    edited February 2015

    Tree 27 I did, I had mantel radiation 30 years ago for hodgkins lymphoma and they didn't want to radiate the same area . They also feel this caused me to have coronary artery disease and the breast cancer. I have large dense breasts and my RO was happy since it was best to do my zapping on my stomach so I had could dangle lol. It's not very comfortable but it's done and I was able to deal with it.

  • MarieNJ
    MarieNJ Member Posts: 183
    edited February 2015

    Hi Ladies,

    It's been awhile. I'm doing great. Getting ready to go to Florida in between Herceptin treatments. My husband and I can't stand the cold!

    I had 16 treatments on my stomach. My shoulder ached, but it does protect the rest of your heart and lungs. It is accelerated. So you do get the same dosage. Worked out well for me.

    My neighbor up the hall had bc 22 years ago. She told me my energy level would come back to normal most likely in about 6 months past chemo. I have to tell you - she was right! I feel just about back to normal. I'm coming up on my 6 month anniversary Feb 25th. So ladies, be patient. Your energy level will come back! I still walk on my treadmill each day for 1/2 hour and try to drink at least 8 glasses of water a day. Get the toxins out of your system - the sooner the better! Happy

    I had 2 haircuts already. It is very short, very thick, wavy and salt and pepper. I am enjoying the color especially not worrying about the roots growing in!

    Here is a recent picture of me.

    image

    Stay safe, warm and healthy!

    (((Hugs)))

    Marie





  • Nancy6540
    Nancy6540 Member Posts: 26
    edited February 2015

    Marie your hair looks great! I like the salt and pepper, it gives it dimension.

    Now that I finished radiation, We are also going back to our home in FL for a month and a half. At first we were only going for two weeks and my son told us we were crazy (respectfully lol)! We drive with our two Goldendoodles so flying is out of the question. He explained that my husband didn't need to come back for the next Herceptin, only I did. (Duh) so I made reservations to fly up on a Sunday in March stay overnight in our NJ house and Monday morning have my infusion and fly back to FL that afternoon! This way we can stay another two weeks before driving back home to NJ!I know I could get my Herceptin in FL but I am used to MSK. Now if I can just stay out of the sun!

    Life is Good! Safe travels!!

    Nancy

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