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Halaven - Day 1

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Comments

  • apple
    apple Member Posts: 1,466
    edited August 2012

    the Halaven is working but not fast enough for the onc.  I am taking one more cycle and then might move on to (i can't remember the name).  I guess I might then have the option of a mastectomy.

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

    Hey MM/Apple, how long have you been on it before scans?  I have to wait forever to find out but symptoms are better.  OOooo, I hope whatever works works darlin!

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

    Yall ive been close to passing out for a few days. Thinking dehydration...trying to drink more and eat salt. Anyone had similar sx?

  • bcsurvivor76
    bcsurvivor76 Member Posts: 9
    edited August 2012

    I am scheduled for my last Halaven treatment on Wednesday. Then, headed to MDA for scans to see if the how the cancer responded. I am hopeful. Currently, I am very tired, and have breakthrough nausea. I also had neuropathy, which is much more bothersome, and wondered if others had the same SE?

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

    BCS, I'm pretty sure neuropathy will hang in with the Halaven.   How frequently can you rest?   Do you have to make yourself stop?

    I guess I'm spoiled with frequent breaks and then if life kicks up, woo, you gotta ride the bronco  with everyone else.    Many best wishes for improvement.  I honestly feel like its helping me!

  • bcsurvivor76
    bcsurvivor76 Member Posts: 9
    edited August 2012

    I am a stay at home mom, so I have the ability to rest all day if needed. It is really more about the annoying feeling that anything.

     Right now, I am scheduled to get rescanned, and then surgery and radiation are to follow. I often wonder if I will end up back on chemo, or if I will actually achieve NED :-)

    How do you get breaks?

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited August 2012

    My fingertips are number, but I haven't felt sick since I started taking Prilosec. My liver Enzmes went up by 10 - 20 points. I know it's not much, but I'm freaking out just a little. Stupid considering I'm still below normal. I just really like this chemo. My hair is even coming back.

  • holdontohope
    holdontohope Member Posts: 44
    edited August 2012

    Spamgirl, are you taking Prilosec every day?  I took it for the 14 day course, then stopped.  It really helped when I was taking it.  I can't seem to get a straight answer from anyone about whether it is okay to take it continuously.

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited August 2012

    My onc is okay ewiyh me taking it

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

    Well i found out how to gain weight:   One bag of Lays potato chips, eat as much as possible, wash down with Low alcohol beer.  6 Pepperridge farm cookies (chess men), wash down with milk.  Then go to bed so you can absorb all the calories.

  • geowys
    geowys Member Posts: 3
    edited August 2012

    I do Halaven on Mondays, nurse injets armful of neupogen on Tuesday, (prilosec daily as well as other vitamns and oils, arthritis, etc.), and have shifted from 2 weeks on 1 off to every other week because of the neuropathy.  CA15-3 has dropped from 325 to 70.8.  Nothing new in all pictures. Latest problems are with UTI's (and a little spotting at age 59) and while on Warfarin can't drink much cranberry juice. The best thing going on is I scheduled a train trip thru New England foliage with some friends.  Been putting off any vacation for way too long.  Although Illinois has beautiful Autumns I have never been East and am looking forward to seeing my first lighthouse and fresh lobster dinner. Definately has lifted my spirits and something to look forward to besides more treatments, CT's, PET's etc. Dr is giving a 1 week break before trip to allow hands/feet to improve.  Figured the tiredness bouts will be accomodated by being on a train -- taking a small pillow.  Will smile a lot between naps.

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

    OH BABY!    Geo, you got it going on!   

    Any good news for one.........good news for all.

  • holdontohope
    holdontohope Member Posts: 44
    edited August 2012

    Geo, that sounds like an absolutely fabulous trip!  I may have to add that to my list.  Great news about your tumor markers dropping!

  • Sheryl_Lynn
    Sheryl_Lynn Member Posts: 3
    edited August 2012

    Is anyone taking Halaven and Avastin? If so, I am wondering what pre-meds are being administered and what side effects everyone has experienced.  I know everyone's body is different but I am still curious.  I started a few days ago and had some nausea and an overall feeling of blah. 

    I was on Abraxane/Avastin for 8mos. prior to this and only had neuropathy briefly.  I took alpha lipoic acid recommended by my Onc and it took the neuropathy away in a few days. I never had any pre meds with Abraxane/Avastin.

    Thanks for your feedback.

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

    Dear Havenlies,

    Well, freak my freak.  Tired of hair that looks like fine steel wool.   Finally broke down, went to the EXPENSIVE salon, came home with brillo pad hair.   I really think I would prefer NO HAIR.   I have to wax my mustache, shave my legs, and trim nose hairs.   But the head looks like that weird old lady with fuzzy hair.   Well, now it has "lowlights" on top.  Fuzzy $125 lowlights.  

    Yell

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited September 2012

    I keep petting my steel wool.

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

    Awww, you're glad you have any hair?   Bless ya.     

    what patterms have you all noticed with H and fatigue?   Is there a known drug effect schedule?   I can hardly believe this was my week offf..    feels like my ANC will be too low by Tuesday.

  • alesta29
    alesta29 Member Posts: 240
    edited September 2012

    Wondering if I'll ever get the damn stuff again. Due for 2nd dose after almost a months break from 1st one which knocked my neuts for 6. Have had a temp in the evening for the last 2 nights. Thinking its overdoing it and bowel related and wondering if I should start taking one of those probiotics (especially after reading about c. Diff and Coolbreeze's experience). Also I know they recommend you stay off green tea with Taxanes- this is a Taxane - yes?



    Great to hear good news-keep posting!



    Lx

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited September 2012

    It's not a taxane. It comes from a sea sponge. Right now I do my chemo on Mon and I sleep about 20 hours Wed night into Thurs. morning. I haven't tried ritalin or concerta to help with fatigue. My WBC drop, but my onc just gives me nuepogen shots.

    As for the constipation, I've been taking a couple of fiber chews a day and a dose of Mirilax. Now that I'm taking both everyday, things are working like a champ.

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

    Yo, I have pimple-like lesions in mouth and throat.....     any ideas?   I will go over to oncology tomorrow before tx, trust me.  But this is some weird stuff.

  • mari55
    mari55 Member Posts: 12
    edited September 2012

    Halavan has been pretty rough on me but has really kicked the cancer to the curb.  My first round my onc gave me a high dose and I ended up with horrible mouth sores, ( so bad I became malnourished and dehydrated) a sinus infections with huge blood clots coming out of my nose, low counts and so tired I could not get out of the bed.  Biotene mouth wash  helped me the most with the mouth sores.  I was given a two week break and then a lower dose. Side effects not as bad but still very tired and my counts went down again and this time the blood clots came out the other end ( GI bleed).  Despite the horrible SEs my bone marrow is working again ( off halavan my platelets are above 100 for the first time in 6 months and my RBCs are going up on their own), my Ca27,29 has dropped to 136 from 680, my liver enzymes decreased from over 200 to 60. I still have some acites and my onc is worried I may have a portal vein thrombosis given all the clotting I seem to do.  I will have a CT scan to look for this early next week along with recheck of all the lab. I see him again in two weeks to determine how to proceed.  

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited September 2012

    I'm sorry about the side effects, but I'm glad it's kicking that bastards to the curb.

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

    Alesta maybe this drug is working too well or maybe its your devil and they should switch to other now.   I forget have you had xeloda?   Thats  what she gave me when my devil (doxil) had me ready to jump off the program completely.

    Re expensive salon, went back to be told nothing to be done about steel wool and had eyebrows tinted.   I think it was gone by the time i got home.

    Re halaven effectiveness, my eyes are still clearing and i expect a good report from chest-abd-pelvis CT's.

    Been looking for a recliner...   any recommendations?

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

    Dear Havenlies,

    Finally have all the test results in, so thought Id share that my Chest  lesions are  improved or stable....   abd and pelvis, NED.   Add that to brain and eyes nearly or at NED and Id say we have a great drug here.  Hope yall get news as good as this soon.

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited September 2012

    K-Lo, how long have you been on it. I'm on 5 months and counting. Who has the longest success with Halaven?

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

    Good Q. I started 6 months ago but took 6 weeks off for.rads. i could tell it was already working.

    Except.for.the long long naps im happy.

  • alesta29
    alesta29 Member Posts: 240
    edited September 2012

    Great news Kathy! I'm due second dose tomorrow after a 5 week break due to neutropenia, infections and just had to have 7L drained today.... But chemo tomorrow - yaaaaay!

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

    Dear Halaven God(esses),

    Please let Alesta get optimum results without bad side effects.

    We believe in you!



    (((Alesta))))

  • holdontohope
    holdontohope Member Posts: 44
    edited September 2012

    Alesta, so happy for you!  Hope Halaven kicks some cancer butt!

  • alesta29
    alesta29 Member Posts: 240
    edited September 2012

    Feel like Pavlovs dog. They just showed me the infusion and I started yawning!



    Slept for a few hours in chemo chair and just waiting for my OH to pick me up. Will be aslee in the back all the way home!



    Hopefully more awake on Sunday... Does everybody else sleep after this stuff?



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