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Halaven - Day 1

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Comments

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    Eag, I do nit get decadron w Halaven . Did u have extreme nausea/ vomiting issues? I get it with Gamma tx and wean off quickly but I can eat two weeks worth of food while on it. :*) Suddenly, I have a bottomless stomach.

    Over now tho, back to small appropriate feedings.

  • penny4cats
    penny4cats Member Posts: 70
    edited March 2012

    first onc had never given halaven insisted on decadron, each treatment the dose was cut in half and then stopped. new onc agreed. tried to find out from someone who has their tx at dana farber if there protocol was steroid free. yes each case is individual but i think alot of us don't have steroid. it's almost april and time for phillie

  • TXAllie
    TXAllie Member Posts: 7
    edited March 2012

    Good Morning!!  I am so glad I found this group. I was initially dx with Stage 2 Breast Cancer. Went through aggressive chemo. I was given Cytoxin & Adriamycin followed by Taxol.. I describe that time as being my 6 months in hell..  Then 9 years to the day I was dx with Stage 4 Metastatic Breast Cancer. At that time the cancer was only found on my bones and a spot on my lung. In the past 4 years I've been treated with several AI's. On March 6th I went in for my normal scans and it was found that the cancer has moved to my liver. So I am now starting Halaven. I had my 1st treatment of Halaven on Thur Mar 22. They tried to give me Decadron with Zofran but I had a bad reaction to the steroid so i will not be getting that. I've had bad nausea which started subsiding on sunday.. I'm also having bad fatigue.. which that hasn't gone away yet. And i'm still managing to work full time.  At what point did y'all notice your hair thinning or falling out?  And do y'all notice the side effects getting better as the treatment goes on or do they continue to be the same with each treatment?

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    Hey Tx, welcome.

    Funny I wanted to post about fatigue and nausea today.  I went to the clinic for my 5 minute infusion and after waiting 1.5 hours, I was getting really irritable and wanting to go home.  Well, THEN I was finally told that my Neutrophils were too low to get Halaven anyway.   I swear I could've predicted this...   Anyone ever see correlation of fatigue and malaise to low counts?   It seems logical if you are anemic but why low WBC's?

    So now we wait till next week...   what a bore.  ~~~ Grouchy, Grumpy Kathy

  • eag1954
    eag1954 Member Posts: 119
    edited March 2012

    Welcome TX.  The se's still seem to be the same.  The hardest thing is the decadron.  I think I really had a bad reaction this time.  My mood swings are really bad.  Tears and anger. After day 3/4 evey day I start feeling a little better.  Not this time.  As far as hair, I think mine fell out after my 2nd treatment.  You really can tell when your counts are low.  The fatigue and the lethargy let me know every time. 

  • TXAllie
    TXAllie Member Posts: 7
    edited March 2012

    Well I have my next treatment this Thur. It will be the first time i've had my CBC done to find out if my counts are low. The fatigue i've had I wouldn't be surprised if they are.

    I haven't had any bad mood swings but I have been an emotional wreck. But I've got 2 boys that I have to try and stay strong for.

  • momofbraj
    momofbraj Member Posts: 8
    edited March 2012

    I am a little nervous after reading the above posts.  I start Halaven tomorrow.  I have been on abraxane for 6 months and had lonly annoying side effects (hair loss, black nails (that are falling off) and a lot of dry eyeness which has really affected my eyesight) but no nausea, fatigue or headaches.  It seems like the next few weeks aren't going to be so enjoyable. The doctor emphasized the fatigue issue and risk of infection but failed to mention the rest.  I was on gemzar last summer and that really sucked. I was usually not feeling well for two days post treatment. I was hoping for a better summer.  Here's hoping the treatment works, good summer or not. Any advice on being proactive to decrease the side effects?.

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    Eag, sorry I have no memory....  did you lose all of your hair?  

    They've changed the WBC count reports since I had Abraxane.  Now they show the Absolute Neutrophil Count which was .96.  So 960, right?  They talk about 500 being the cutoff sometimes, so I feel like I shouldnt be too sick!    Laughing

  • TXAllie
    TXAllie Member Posts: 7
    edited March 2012

    When I first saw the Dr for my consult on Halaven she told me that it was tolerable and that there was only a slight chance that my hair was gonna fall out. But after all this I guess I should start expecting to lose my hair within the next couple of weeks :( 

    After having my treatment on Thur I did get out on Sat to go to the movies and try to keep active but I was really worn out by the end of the day so I wouldn't suggest you do all that.  I would just let your body tell you what it can do. My Dr told me that walking helps out with the fatigue but that just wore me out more. The first 3 or 4 day will be the toughest but after that things start looking up right when week 2 comes around. So you get about 3 good days before it starts all over..

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    Momofbraj,

    I too abraxane for 8 months. I believe Halaven is a bit easier. Same type of slow-downs but not as bad as I recall. Hair fell out all at once. Right now my hair is thinning but no one knows but me and DH. So that's a slightly positive perspective. :*)

  • TXAllie
    TXAllie Member Posts: 7
    edited March 2012

    At what point in your treatment (Halaven) did y'all notice hair thinning or hair loss. I'm going on my 2nd treatment tomorrow and I'm starting to panic :(

  • eag1954
    eag1954 Member Posts: 119
    edited March 2012

    Hey Allie...don't panic!!!!  Mine was after the 2nd treatment...but it started growing back and now I have a Halaven Halo....oh I also have brows!!! Eyelashes starting to grow back verrrrryyyyyy slowly.  Other places growing back slowly as well..Its gonna be alright Allie.  You know everybody doesnt have every se.  Here's hoping that yours doesnt fall out at all.  Checked with my dr about the decaadron, onc. nurse says "he may be willing to lower the dose."  Even after I told her about the mood swings????  #@!^

  • TXAllie
    TXAllie Member Posts: 7
    edited March 2012

    I finally got my hair to grow and now i'm gonna have to start over :(  So, did your hair start growing back right away? Or did it take a few months?

    My onc lowered my dose before I even got the med. I had been on dexamethasone and that's the same thing as decadron and had bad side effects. I was suprised she even gave it to me. Guess she wanted to just give it a try..  The reaction was just to much so I can't get it at all. Which sucks because the Zofran wears off within 24 hours of treatment.

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    Lets see, I should be on my second cycle. "Day one" was yesterday but halaven was cancelled due to low ANC. Hair is falling out now but I still have enough to comb over. Simply don't know what will happen next.

  • menan
    menan Member Posts: 18
    edited March 2012

    Elizabeth - I so agree about the hair!!  Mine crept off my head for about a week before I finally shaved it!  My daughter came over, took one look and said Mom it has to go!  I too felt empathy for what men go through but in the end mine was very patchy. I haven't noticed hair loss any other place yet.

    Friday I get my second shot of the second cycle.  Since my WBC went so low, my onc lowered my dose by 20%, but my SE seemed to be worse.  Dozed all day Sunday and Monday and Tuesday I needed meds so drove, but probably shouldn't have yet.  Today I spent with my daughter at the mall and feel good.  Constipation and heartburn have been my biggest problems but pecan pie is a good laxative for me so I have been  eating that! I also have OTC to take.

    Tomorrow is lab day and if you can tell WBC by how tired you are I should be OK.  What has me concerned is the next week since  there is no lab work ordered. Temperature taking time, here I come.

    Stay strong Halavanites!

  • K-Lo
    K-Lo Member Posts: 826
    edited March 2012

    Halvenites! Re hair, when I look in the mirror, it looks thinner but intact...... until... I look at the back with a SECOND mirror (play psycho music! !!!!!!). The horror! Big Panama canal of pink skin. Scarves and hats coming up.

    However, re energy..... after resting (wallowing) the day they said my counts were low, I have gradually gotten back to the new normal. We had a little music party tonight. My DH plays guitar in any genre and his buds play trumpet, violin, and harmonica. The rest of us sang and made some percussion efforts. It was a blast and so good to feel alive again. :*)

  • bourscheid
    bourscheid Member Posts: 43
    edited April 2012

    Hi ladies!  Went for Halaven on Thursday (last of cycle 3) and lo and behold I was running a fever.  I haven't run a fever in 10 years.  Well, I have this boil on my rear and had sat in a meeting in a hard chair for 6 hours then drove 3 hours home (all that on day 5).  Not a good idea.  Boil is infected and actually got the size of a golf ball...ouch!  So, no Halaven.  Antibiotics and hot compresses.  Seems to be working though.  No fever today and feeling much better, there is great shrinkage, etc. in the "hot seat".  Have to go back on Monday for the Halaven which will really screw up my work week...the week before Spring Break.  At least my off week is during Spring Break so I can enjoy myself a little.  On a better note...I get a week at the beach compliments of Little Pink Houses of Hope!  Woohoo!  Can't wait until May 13!

  • eag1954
    eag1954 Member Posts: 119
    edited April 2012

    OMG!!! Kathy, I know!!! Thats the same with my hair!  What you described is exactly how mine looks!  Got a wig I'd ordered today and after al the wigs I've bought, I finally found the one!  As much as I hate wigs, I found the one that suits me.  My preference is hats and scarves.  Love to hear it when you guys have a good time.  Takes the focus off all the other things we;re dealing with.

    Ouch Lori..but again, on a happier note, please enjoy your time at the beach!  I'm so happy for you.  I hope you can have a week where you don't have to think about anything but having a good time.

    Sorry for the long post, but question.  Do you guys get discouraged, fearful, etc. when you read about others that are at the end of their treatment?  When I read it, I get so sad.  It just brings all the worries and fears I have to the forefront.  I'm just hoping that Halaven works for us for years to come. 

    r

  • eag1954
    eag1954 Member Posts: 119
    edited April 2012

    Wondering how Donese and Robin are doing...

  • penny4cats
    penny4cats Member Posts: 70
    edited April 2012

    i know i should not watch my tumor markers be like the stock market but felt oh so mortal when cea was up and ca 27-29 down only by 10 points each stable in the oncs view but i wanted halven to be my bullet one that would last me years then crash back to journaling for my kids and crying now back to living but not looking forward to scan this month, feel okay and keep forgetting in our world how we feel is a huge part of the equation sx+markers increasing+ scan progression=treatment change... wish affintor was approved already for breast.. will have fun in phill... time to live, celebrate, sing, dance, a mets version of springbreak,..... donese how are you and robin

  • eag1954
    eag1954 Member Posts: 119
    edited April 2012

    Oh Penny I know, I know...wish I didn't, but I do..sending you hugs. I'm with you...my hope was and is the same..that halaven will keep me stable for years.  In this world, I guess I'm asking for alot.  Need to read up on affinitor.  Not going to make it to Philly....no money...so sad...

  • penny4cats
    penny4cats Member Posts: 70
    edited April 2012

    is it to late to request a travel grant? alot of women have plans that change last minute so could you be put on a list? i will have to take a cardboard hallie wearing aa for affintor/aromasin...sunshine and sewing class for me today. chocolate for breakfast.. my preferred form of caffeine after morning tea.hugs

  • penny4cats
    penny4cats Member Posts: 70
    edited April 2012

    Lori, I can only imagine your discomfort and pain..hope the anitbiotic has kicked in. I didn't get picked by LPHOH but take that walk for me and post on facebook some lovely photos of the beach/nature. May will be here soon and you will be at the beach with your loved ones!

  • eag1954
    eag1954 Member Posts: 119
    edited April 2012

    Gonna try for the travel grant.  Enjoy the sunshine today.  This Halaven sister is going to pick up her new Maltese puppy today.  Praying that I feel well enough from chemo this weekend to walk him, etc.  My Shih-Tzu passed away on the 11th of March...I could never replace him..but thought I'd get a new companion.  You guys, please post often.  I wonder how everyones doing when you dont.

    Elizabeth

  • penny4cats
    penny4cats Member Posts: 70
    edited April 2012

    my sympathy on the loss of your fur baby. can me get wigs made from when the new furbaby gets her hair trimmed. would rather look like a maltese than my current chia pet

  • eag1954
    eag1954 Member Posts: 119
    edited April 2012

    Penny...tysm!!! You bought a smile to my face!!!!  I'd been having a rough day and you broke thru the gloom.  Sure, just let me know where you are and I'll mail it to you.  After buying I dont know how many wigs, I finally found 1 cute 1.  I'm donating the rest to a cancer org. He's so adorable with thick white fur that I HAVE TO COMB EVERYDAY!!!!  Aaaarrggghhh..

  • penny4cats
    penny4cats Member Posts: 70
    edited April 2012

    am jealous...hair to comb sounds great...have white hair mostly now...remember when i used to pull out the grays...those were the days..off to laugh while watching raising hope on fox

  • K-Lo
    K-Lo Member Posts: 826
    edited April 2012

    Heavenlies: Here's my update from pulmonologist: he does NOT see carcinomatosis on my scans.....really really good.news. Re the hoarse voice, I have to see ENT. Hmmm! Anyway, he thinks it.could be from reflux.but ENT should look at vocal cords.just in case. Apparently there's a territory agreement where pulmonary only scopes below the larynx! :*)

    But something tells me that Halaven is working, my dear friends. I believe!

  • penny4cats
    penny4cats Member Posts: 70
    edited April 2012

    so happy for your good news...completed my sixth cycle of halaven today..scan and tumor markers after seventh cycle completed.. i would opt for markers every third cycle but onc wants every two to look for stable or trends. still haven't had the port put in, keeping my fingers crossed that when halaven stops working for me i could opt for affinitor/aromasin avoiding port a little longer..problem is insurance coverage which varies carrier to carrier..can't believe they can play with women's lives

  • K-Lo
    K-Lo Member Posts: 826
    edited April 2012

    Well penny, a port carries some risk, so go with your gut. Insurance. I won't get started.

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