Who's on Kadcyla/TDM1?

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  • DL3
    DL3 Member Posts: 134

    Hi Denny123 !

    my nurse mentioned the other day she thought the new standard will be no wait after Kadcyla. but I will know with my next infusion. I sure hope so as I dont like the wait. lol but I do wait. I only get saline prior and during infusion. once kadcyla is done the machine beeps and out comes the iv and I wait. wonder why I dont get saline after? i dont get any premeds either.,

  • DL3
    DL3 Member Posts: 134

    Hi Ladies, have any of you had a rise in you liver ALT or AST in your bloodwork? my alt is great in normal but my AST went up again from last time (was 37)now 46 hmmm I was trying to think if took any pain meds before labs ... I dont think I did/ I really dont drink either. Maybe a glass of wine once a month. i noticed my glucose was up too. :( which I know the culprit... darn new york mint patties. I have been grabbing and eating way too much candy. so I need to stop that. wonder if my glucose being high can increase my AST for liver? otherwise all else is great. so curious if your liver enzymes went up. my Onc said kadcyla can cause this ...so we have to monitor very closely. also I havent been drinking my water and exercisng like i use too/should be

  • EMAW
    EMAW Member Posts: 99

    DL3, Yes, my ALT's and AST's are over the "normal" level; here's where they are on my most recent (2/10/17) bloodwork:

    Alkaline Phosphatase178 U/L35 - 125 U/L
    Alanine Aminotransferase49 U/L0 - 33 U/L
    Aspartate Aminotransferase52 U/L0 - 30 U/L


    While these may seem alarming, Fox Chase Cancer Ctr. maintains that increased liver enzymes is normal with this drug (it is the Kadcyla that raises these, DL3). I can go into my portal at FCCC and see a graph of the past year on this drug, and these numbers have stayed relatively the same. If it gets too high, they'll reduce the dose. My breast cancer mets are in the liver and a few lymph nodes; all of these sites are clean now. But since my liver was the place where it was impacted, I will ask them from time to time about these numbers.

    If the mets are in your liver, drinking is not the best idea right now, but I think a glass of wine is fine, though I can't find any data that suggests it will improve thse liver enzymes. I believe that drinking your 64 ounces of water/day might be the best help. I was told to take B6 by my Onc; I also take B12 (hoping it might help the neuropathy).

    Ask your Onc the next time what number above the "normal" range is too much; they'll probably reassure you that Kadcyla causes this and it's OK at the levels you mention.

    Also, FCCC is occasionally fussy about the half hour wait, but mostly doesn't follow it. Probably because I've been on it for a year.

  • DL3
    DL3 Member Posts: 134

    Hi Miriam, Thank you for reply! no liver mets. I have lung mets. a 4 mm and a 7mm small mets but still.. I have them.


    yes on my previous labs the AST was 37 and onc said we would monitor i just checked my labs online that is when I saw this morning my AST was 46 my BUN and Bilibrubin are all normal range . my onc did mention last time that kadcyla can effect liver enzymes and did mention he wasnt too concerned with my number.. but if it gets 3x's the normal range that is when he will do changes .. as you mentioned.... in your post

  • pwilmarth
    pwilmarth Member Posts: 138

    The best way to interpret you Liver Function Tests is too look at what your lab reports as a normal range.

    For example, my lab reports a normal range as 5-40 for an AST, 5-50 for an ALT and 0.1-1.5 for a bilirubin. These are the tests that Genentech recommends for monitoring your liver.

    Genentech then makes recommendations for dosing your Kadcyla based on something called ULN (which means upper limits of normal). I have had 6 doses of Kadcyla, and my bilirubin and ALT have remained in the normal range and pretty stable.

    My AST did rise to 50 after my first dose, but has remained stable until this last dose, where it went up to 61. Both of those numbers are outside of the "normal level" reported by my lab. However, Genentech doesn't recommend making any changes in the dose until we reach 5 times the upper range of normal. Should that happen, the dose will be held until my labs return to 2 times the upper range of normal and the drug will be restarted at a lower dose

    This becomes a serious issue if your lab results are 20 times the upper range of normal. That's when they will stop the treatment

  • margaritams
    margaritams Member Posts: 183

    DL3, I'm glad you brought this issue up because it's something I've been a bit concerned about as well. My liver labs have been consistently above the "normal" range since I started on this drug. My doc said much the same thing as pwilmarth said - that some elevation of these numbers is common but should be watched. She also has said it is not really a worry unless/until it is several times higher than normal. I'm curious whether any of the ladies who have been on Kadcyla for years have seen these numbers rise

  • DL3
    DL3 Member Posts: 134

    Just stopping in... wanted to wish you ladies a Beautiful weekend.

  • ESCORPION
    ESCORPION Member Posts: 99

    Hello!!!

    How everybody is doing??

    Hope everybody is ok,

    I just saw this documentary call CRACKING CANCER(CBC)

    I have a question for the ladies who live in USA...

    Anybody have any information about POG( personalized oncogenomics )

    Apparently British Columbia is doing a trial to match the cancer gene with some medications , and has been some success ...

    Is USA running this types of trials too?

    Can anybody explain the difference between gene genomic and cancer genomic ????

    Thanks and have a great night!!!



  • margaritams
    margaritams Member Posts: 183

    Hi escorpion! Doing pretty well here - thanks for asking. Hope you are too!

    I can't really help to answer your genome questions because I really don't understand it myself. I suggest you may want to post your question on the bone mets thread as it's a very active thread with some very knowledgeable folks on it. You may just get a faster reply.

    Cheers

  • gramen
    gramen Member Posts: 116

    Greetings Kadcyla ladies! Good to hear from you all.

    Escorpion I agree with Margarita you should ask in the more active threads. I've heard about this trial: https://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-match

    When I asked my Dr about it she explained that after everything is said and done only about 10-15 percent get a drug based on their mutations


  • ESCORPION
    ESCORPION Member Posts: 99

    Than you Ladies!!!


    Have a good evening everyone!!!


  • DL3
    DL3 Member Posts: 134

    Hello ladies. Just stopping by ..checking in. labs monday/oncologist mon then kadcyla tues.

    Wishing you all a Beautiful weekend.

  • ESCORPION
    ESCORPION Member Posts: 99

    Thanks, whisking you the same!!!

  • DL3
    DL3 Member Posts: 134

    Thank you Escorpion !

  • Pasque
    Pasque Member Posts: 25

    Hi, Had a treatment on the 8th. Have had some bad leg pains, cramps. Doesn't last long but comes often. Just wondering if anyone else has these and what do you do for them. Had some pains before but not this bad. So good to have the weather turning so nice here but can't do much with the pain. Hope everyone is doing good. My labs are great, normal straight down the line. Doc is real happy with that. Will talk to him about the pain next time I am in.

  • denny123
    denny123 Member Posts: 1,554

    Pasque-I have been on Kadcyla for over 3 years. I still get the leg pains after my treatment for a few days. They are worse at night. They are helped by Motrin.

    As far as the cramps-could that be constipation? I have to take Miralax and stool softeners every night to help that.

  • ESCORPION
    ESCORPION Member Posts: 99

    Hi ladies!!!

    Actually I have Katcyla last March 9, and I still have pain in my legs to my feet, the weather it's has been bad, cold and get in to my feet when I step out...I took some tynelol and does nothing, only helps a bit when I take Tynelol 3. My right arm still gets numb ....

    I hope I will get better ....next days!!!

    Anyway wishing everybody....good health and long long life.....

  • Pasque
    Pasque Member Posts: 25

    Thanks for getting back about the pain. The ibuprofen doesn't seem to help. I really try to avoid the pain pills as long as I can. But sure glad I have them when the ibuprofen doesn't work; Haven't tried aleve for a while. May try that again. Just so much to try and hard to try it all. And if it doesn't help, the wait till you can take something else can be long.. It usually lasts a week and then not bad. I live alone and when it is bad I just yell as loud as I want. That seems to help. I am going to have company this week so have to remember not to yell. Be nice to have little kids around. Sure looking forward to it. Will make everything feel better.

  • ESCORPION
    ESCORPION Member Posts: 99

    Pasque:

    You make me laugh... You thinks just like me... I always try to avoid unnessesary medications, but if I Learn anything valuable in this journey is that we have to make ours lives happier meanwhile we are still here...be kind with ourself .... Try to be pain free as much as we can, always when I am in pain , I get depression , no pain no depression.....

    So take care yourself ..... And the only friend we have is ourself ...

  • DL3
    DL3 Member Posts: 134

    just stopping in.... all is good . I wanted to wish you all a Beautiful weekend~!

  • denny123
    denny123 Member Posts: 1,554

    YAYAYAYAY! I am celebrating because Trump's health care plan failed! I get to live a little longer!!!!!!!!!!!!

    I am also on Medicaid that was at risk.

  • gramen
    gramen Member Posts: 116

    Yay!!!! I'm still in disbelief about the healthcare bill, but I'll take this!. I too hope we get to live longer and that Kadcyla keeps working it's magic for all of us!

  • margaritams
    margaritams Member Posts: 183

    Yes! It is excellent news that the Trumpcare plan failed! So many people depend on it and the right to healthcare belongs to everyone - imo. I hope that Congress will take this opportunity and the necessary time to work on finding ways to improve on the parts of Obamacare that need improvement and stop trying to rush through a disastrous repeal and replace. They should start with drug costs. I'm so grateful to have access to Kadcyla but I know it is one of the more expensive cancer drugs on the market so can't help but worry about our future access to it under whatever health plan/insurance comes next. Here's hoping we all get to keep receiving it, that it keeps working and that we keep living lives with great quality for a long time to come.
  • ESCORPION
    ESCORPION Member Posts: 99

    I am so happy, is really great news!!!

    Wishing everybody long and good quality of life too...

  • gramen
    gramen Member Posts: 116

    Hi all!

    I'm traveling this week for work and one of my crowns (dental lol) became loose!!! My luck. Are there any precautions we need to take when going to the dentist? I'm only on Kadcyla.

    Going to email my Dr right now too.

    In the meantime I will be surviving on smoothies :-D

  • DL3
    DL3 Member Posts: 134

    gramen, Bless your heart, I dont think there are precautions with kadcyla only, not sure tho. but like you would contact my ONc. when I was going thru chemo (TCHP) i broke a tooth..cracked right in 2 did get approval to get it pulled but had to have labs day before and day of to ck counts with with both dentist and Onc Good Luck.

  • DL3
    DL3 Member Posts: 134

    how often do you ladies have your echo? i have echo about every 3 months sometimes it gets stretched to almos 4 months. I have CT scan every 3 to 4 months. as long as stable and or better.... i think onc will go with ct every 4 months

    EDIT:the echo...wand... always bothers me... I really dont care for that test. the techs push that wand in too hard. had my last one couple weeks ago, and I had additional breast reconstruction 7 weeks prior.... told tech if you push too hard... I might have to let you know your pushing on me too hard in the sternum area as i was still tender. but this tech did a really good job this time.

  • denny123
    denny123 Member Posts: 1,554

    Gramen-looks like you had recon. If you have implants, you need to always take antibiotic before any dental cleaning. PLUS an OTC Probiotic.

    I also take Cleosin before any dental work since that can be invasive.

    I have had extensive dental work during my 3 years on Kadcyla (thanks to 2 quack dentists that I have had in the past), and there was no problem.

  • denny123
    denny123 Member Posts: 1,554

    DL3-I have the same Echo every 3-4 months, and scans every 3-4 months. Amazingly, after years and years of PET scans, my next scan will only be a CT scan.

    Guess they are just watching to see how big the 8 nodes grow.

  • gramen
    gramen Member Posts: 116

    thank you ladies!