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Weekly Taxol group

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Comments

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    Yay Ladyfighter! you look great! I thought that was a pink wig!

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    I did too! You look great......I need to post mine, I look just like you guys!

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    I am a little confused. I am getting weekly Taxol but herceptin every three weeks. Some studies have suggested Herceptin every week for the 12 weeks of Taxol. For those Her2 positive here what are you getting, Herceptin ever three weeks or weekly. Also I am getting 6mgs/kg since I am on the three week schedule. Do you know your dosage. Thanks for your help.

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    Hi guys. Haven't posted but have been keeping up. I have moved to the weekly Taxol which has it's own issues. But I had a question that the her2 positive folks might be able to answer.

    I am a little confused. I am getting weekly Taxol but herceptin every three weeks. Some studies have suggested Herceptin every week for the 12 weeks of Taxol. For those Her2 positive here what are you getting, Herceptin ever three weeks or weekly. Any ideas as to which is better??? Also I am getting 6mgs/kg since I am on the three week schedule. Do you know your dosage. Thanks for your help.

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    Sorry had to delete the repeat post.

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    Hopeful, I get my Herceptin every three weeks. I'll have to check on the dosage.

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    Thanks Sissydi. That puts my mind to rest a little. I was worried I was doing something unusual.

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    I would like to wear pink wig! but couldnt find nice light pink color but doesnt matter never wore wig once. :)

     Hopeful, I have taxol and herceptin combo every week for 12 weeks on same day. Then onto herceptin alone every 3 weeks for a year, dont have specific info for that yet. I am going to ask my MO next week when I see him to see why he prefers me on every 3 weeks for year. Everyone's MO gives out different treatments to their patients why? I dont know :/ 

     Is anyone having mri or catscan after chemo ends?

    Have a good day! 

  • gonegirl
    gonegirl Member Posts: 1,022
    edited July 2012

    i get scanned after each round of chemo, but my situation is different because I have metastatic breast cancer. my doctor had me on weekly taxol and herceptin and now i'm on herceptin every 3 weeks while i'm on break from chemol

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    hi gritgirl, did you get mets from the first diagnosis? did you have radiation yet?

    how is herceptin alone every 3 weeks doing to you? no SE?

    Thanks! xoxox 

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    Lady fighter, I got an MRI and ultrasound 1 week after my last dose of chemo. I am sitting in the BS office right now waiting for my pre op appointment...

  • gonegirl
    gonegirl Member Posts: 1,022
    edited July 2012

    ladyfighter, i was mets out the door. i'd been dropped down to mammograms every two years so i try to figure once in a while if they would have caught it if they'd scanned me in 2010 (my last mammo had been 2009).

    at same time, i was having symptoms re my liver in june 2011 (my 2010 mammo would have been november 2010 so that's a difference of only 7 months).  the her2 + cancer i have is apparently very aggressive.

    no radiation as of yet. have a spot on my bone in my leg and oncologist might radiate that.

    trying to figure out issues with herceptin every 3 weeks. i am still very fatigued by the chemo so when i had my first dose of 3 week herceptin, i went straight to sleep after. but it's hard to know if that's the herceptin or the chemo fatigue.  otherwise no side effects, just sleepy.

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    Jpmom, good luck with BS! I had lumpectomy before chemo, would that be different? I had all tests in the book before lumpectomy, but wonder if I should do that after chemo, too? or not necessary?

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    gritgirl, wow every 2 years? My dr insisted that I have every year. the last mammogram saw irregular, i felt nothing no lumps etc. until later that my BS felt lump that I didnt. Yes I agree HER2+ is agressive, I was even more shocked because I am only one in my entire family have that, also I am the baby of the family on both sides of my mom and dad's. I hope i caught it early that my BS in argentina said iam NED after lumpectomy but who knows?

    Hugs xoxo 

  • gonegirl
    gonegirl Member Posts: 1,022
    edited July 2012

    ladyfighter, in the US there is an organization that sends out guidelines for various testing.  They recently sent out guidelines for pap smears and the prostate PSA test, saying both need to be done far less.  here's what they sent out in 2009 re mammograms.

     In 2009, the U.S. Preventive Services Task Force (USPSTF) - a group of health experts that reviews published research and makes recommendations about preventive health care - issued revised mammogram guidelines. Those guidelines include the following:

    • Screening mammograms should be done every two years beginning at age 50 for women at average risk of breast cancer.
    • Screening mammograms before age 50 should not be done routinely and should be based on a woman's values regarding the risks and benefits of mammography.
    • Doctors should not teach women to do breast self-exams.
    • There is insufficient evidence that mammogram screening is effective for women age 75 and older, so specific recommendations for this age group were not included.

    Here's the problem with all of the above Her2+ cancer tends to hit premenopausal women the most and not scanning this group will likely lead to more deaths in this group.  My doctor was following these guidelines with me because there is no family history of breast cancer for me.

    I do get a little pissed about this once in a while, and wonder whether a scan in 2010 would have caught it. Fact is the cancer might not have been detectable at that point or it could have already been on the liver at that point, since we know it was on the liver by June 2011, only 7 months after I would have had the mammogram.

     My story is done at this point and I have to deal with it. But the above guidelines, along with the new guidelines for pap smears (every 3 years for pap) and prostate PSA are going to result in more people showing up with more advanced cancers that would have been caught with yearly testing.  

    My doctor once told me, "Nobody dies of cervical cancer as long as they are getting regular pap smears."

    I have no idea what they're thinking with these new guidelines. Just seems crazy to me. 

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    Grit, they don't make sense to me either. I also had no family history......I waited two years in between mammos because I never felt anything on self breast exams. I'm 49, so if I had followed those guidelines, I STILL wouldn't have had a mammogram! My tumor was deep inside the middle of the breast, behind my nipple, and the doc said i wouldnt have felt it.

    Wow.....my neighbor next door got her first colonoscopy on her 50th birthday, right on schedule. Guess what? She had colon cancer that had spread to her liver! And again, no family history.

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    Wow- everyone of us had the same freaking issue. I was paranoid and did yearly screening since I turned 40. But after after three years of nothing and with my doctor telling me she can't find anything abnormal in breast exams every year i decided to wait two years. Then Bam they found a 3 cm mass. I was so so mad. How could this happen just the one freakng time I delayed it. Most of the mass was DCIS but with Her 2 it is not size as we know.

    Grit- same issue here my her2 to CEP ration is 7! Grade 3! Only saving grace nodes were negative. Again node negative doesnt mean much for Her2. They did CT and bone scans for baseline which came back fine, but I also know these don't pick up small mets. I feel like a ticking time bomb. Oh well I hope it is ju the Taxol that is making me have these dark thoughts.

    Lady fighter- I will probably have scans in October (a month after chemo is done), just like you I had BMX prior to chemo.

    Jpmom- good luck with consult

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    Oh while on this rant about the stupid guidelines- I had dense breasts, no one warned me that this meant I was at a higher risk. This time when I did the mammogram they gave this sheet letting me know about this. Hello, isn't it a bit too late!!!

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    I question those guidelines too. I was 41 when diagnosed. I didn't get my mammogram at forty. Maybe it could have been caught before metastasizing to my nodes maybe it would have given me a false senses of security if it was negative at 40 and then I found a small lump in the area I had my benign fibroadenoma removed. I might have let it go longer. I have an aggressive cancer too. As you said grit girl the story is done we can't change what has happened but I disagree with the new guidelines. I guess the issue is that mammograms are radiation and radiation has risks too. But I think you are right there will be more deaths of young people because of this.



    Lady fighter, I am not sure that they will scan you post chemo or not, it does make sense to do it though. Not sure what the guidelines are on that.



    My consult was done in about five minutes. My bs is very matter of fact. Which I like. He answered my questions and he was very encouraged by the response from chemo that showed on the MRI. Everything is set for my surgery on the 23rd.



  • gonegirl
    gonegirl Member Posts: 1,022
    edited July 2012

    I guess the point is that we have to push on our own behalves.  I had never even heard of HER2+ breast cancer or how aggressive it was.  I sure as heck wish I'd pushed for a mammogram in 2010.  Water under the bridge.  Now I tell everyone to push for yearly paps, mammograms, etc.  And I sure as heck push for myself in other areas.

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    Hi ! I'm I'm infusion room having premeds now then onto #8 taxol and herceptin. My WBC was low but good enuff to go ahead



    Gritgirl, thank you so much for all the info! I'm learning everyday since my diagnosis. We all should have medical degree. :)



    Jpmom, so glad all went well with bs, are you having mastectomy or lumpectomy?



    Sissydi, holy batman!! About your neighbor so sad! I even told my husband last month he needs to go for that because he turned 50 last may, now I wonder if ages doesn't make any difference ?? Sighs



    Hopeful, What you mean by dark thoughts? You worry about something? You are okay :)



    Xoxoxo's

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    ladyfighter, good luck on your infusion, low side effects this time..  I am getting a lumpectomy and axillary node dissection.  they are doing sentinel nodes too but since i already know there are positive nodes there they are really doing an AND.

     My WBC stayed mildly low the whole time on taxol but not low enough to require the boost shots like neulasta.

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    Hi jpmom, how did you know about positive nodes? From biopsy before chemo? I didn't know mine until during lumpectomy and had 3 nodes removed and all negative. How was your rbc and all others during taxol? Thanks

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    Just finished taxol, now onto herceptin right now, boy long day! Was at oncology office for bloodwork at ten then drove to hospital at 12 for infusion, already I'm beat! Got surprise party to go tomorrow we have to dress as 1920's o_O and BBQ party on Sunday! I hope I will be good !

  • jpmomof3
    jpmomof3 Member Posts: 198
    edited July 2012

    Ladyfighter, they saw an abnormal looking nodes on ultrasound and i could feel it so they biposied it when they biopsied my breast. 

    My rbc's dropped mildly with the first dose or two of adriamycin and cytoxan, have been normal since then.  I like red meat though and eat it 2-3 times a week.  I think it helped a lot.  My platelets never got low but they did drop from my normal with the first two AC treatments but have been normal since and taxol didnt affect either my rbc's or platelets.  My wbc's were a little low throughout taxol but not too low. 

  • hopeful123
    hopeful123 Member Posts: 78
    edited July 2012

    Ladyfighter- Dark thoughts of just recurrence, these are transient worries that all of us have so nothing major. Regarding rBC's I am having big problems. Mine hemoglobin was down to 8.2 at last infusion :( I really hope they come back up before the next.

    The thing about weekly taxol is that there is no real good days. With AC the third week was actually very good. Here it is just this nagging fatigue and other small SE's. I just cant wait for this to be over. Cant believe I have 8 more weeks to go.

  • Krazycatlady37
    Krazycatlady37 Member Posts: 2
    edited July 2012

    I had my first taxol on Tuesday. I am doing 12 weekly tacols That was after a 3 week break from 4 dose dense a/c tx.



    I was tired on Tuesday from the IV drip of Benadryl and was a little wired that night /-stayed up til 4am But haven't had a crash yet. I kinda anticipated today being a crash. Nope.

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    I had my crash on the Wed. After my Monday Taxol......slept 12 hours, plus a 2 hour nap!

    Yes, hopeful, I've noticed no real good days on the 12 weekly schedule, but at least the s.e.s aren't too bad....mainly fatigue for me . I have 4 more to go...one more month!

  • Sissydi
    Sissydi Member Posts: 183
    edited July 2012

    Krazycatlady, I do that every Monday night......up until at least 4am, wired from the steroids!

  • ladyfighter
    ladyfighter Member Posts: 57
    edited July 2012

    Jpmom thanks for the info! I love meats too! How are you feeling since PFC?



    Hopeful, I know what you mean about recurrence. I kept looking for survival stats etc then I got tired of it because it is not giving me any straight answer. I got good days each week of taxol. What kind of small SE did you get? Mine only dizzy, and fatigue.



    Crazycatlady and sissydi, last thurs after taxol, that night was wired couldn't sleep till 5am!!! I think from steriod. Then woke up 8am after 3 hours' then couldn't sleep till that night about 10pm, slept till 10am sat morning. but today woke up 1pm after 13 hours sleep. Still beyond exhausted because had 1920 theme party sat till 3am And BBQ Sunday all day. Phew!!



    I wore wig for first time for 1920 theme party because it was perfect since the wig is a bob style. Lol



    #9 is this Thursday!!! Soon soon soon!!!



    Xoxox to all