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Halaven - Day 1

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Comments

  • eag1954
    eag1954 Member Posts: 119
    edited July 2012

    I just dont know whats going on with me.  Its hot here in Kansas...today around 100.  If I just step outside, I'm wiped out and weak.  Forgive me for all the complaining...I'd just like to feel good instead of crappy all the time.  This is day five and I dont have chemo until next Thursday.  Just hoping for a change. 

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

    Eag matbe you need some watering.... pool, hose, creek?

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

    Re low WBC:  realized that sores on labia are related to vag yeast ( I know this is gross).  So treating self as MO mentioned the counts are to blame.

    May not be able to take next TX (7.9) if counts lower.  But I need this baby to knock out some garbage that has affected my vocal cords.  Not going out alert but breathless, okay?  no trach either.    Guess I should tatoo, "no trach" on my neck.   I think 100% oxygen would be the thing...   boy, its exhausting being your own doctor!

  • eag1954
    eag1954 Member Posts: 119
    edited July 2012

    I dont know Kathy...just want to feel good.  Get out of the house..do something...live .  SO the low counts can cause vag yeast to????  Good grief...what dont we have to deal with????

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

    Yes, Liz, that's what MO said.  It's still SO MUCH better than doxil I'm willing to put up with it.

    Hate to repeat ....   again....   but the only way I get out and enjoy a few hours is with meds.   Small doses ritalin and hydrocodone....     That's prolly the 10th time i said it, sorry.     Oh and one of the things I do when medicated is lift weights....   very minimal, but toned muscles seem to give more energy.

    Going to bed as I type, 8PM.

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

    i have to watch vaginal yeast  levels.. i make my husband wash with antibacterial clothes and wear those moisture absorbing pads.. not having pubic hair is challenging.

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

    Here's a tip: if your white counts are down and youre more tired than usual, dont volunteer to babysit, pick up the 25# baby over and over the same day you decide to adopt a 30# puppy.

    Oh, and dont adopt a puppy.  You cant take care of it like you once were able to.

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

    HEY!   Wake up heavenlies. How are yall?

    Check THIS out, last week my WBC/ANC was just over the minimum and I had the tx.  Yesterday, a week after day 1, the counts were UP! 

    I am liking this drug.

  • mari55
    mari55 Member Posts: 12
    edited July 2012

    Started halaven yesterday so don't have much to contribute yet.  I am tired today but not much worse than usual and I have some nausea but it is mild. The posts here have been helpful- at least I know what se's might be around the corner.  I am going to continue to try and work full time.  Luckily I have a flexible schedule so can sleep for awhile and the get up and finish work on the computer if needed.  Hoping the halaven will kick all of our mets to the curb

    Mari 

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited July 2012

    My liver is regressing and my bone mets are stable. I've been on halavan since the middle of March.

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

    Mari, I live my days in patterns of activity and rest.   I try to anticipate the rest need but frequently, its a sudden collapse-type thing. 

    However, most of the time it only takes a 30 minute lie-down.  less often, its a three hour knock-out.

    Only sad thing is if we plan to go out at night and I haven't recovered, I have to cancel.

  • holdontohope
    holdontohope Member Posts: 44
    edited July 2012

    After a terrible first round of Halaven, when I almost ended up in the hospital, I got a second round today.  They have reduced the dosage, so hopefully I will tolerate this better.   The CT from last week showed "numerous low-density masses have developed throughout the liver, which measure up to 2.2 c.m. in diameter."   In March, I only had three lesions, each in the mm size range.

    I sure hope Halaven will work.......

  • eag1954
    eag1954 Member Posts: 119
    edited July 2012

    Kathy..its to late.  I got my new puppy in April and he is a handful!!! Thats putting it mildly.  He gets into everything and is so bad!!! 

    Holdon...I am really really hoping that Halaven works for you.  If you dont mind my asking how did you almost end up in the hospital.  Thats so scary..

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

    Crossing everything in hopes that halaven arrests this progession, HOTH.

    We just never freaking know do we?

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

    Crossing everything in hopes that halaven arrests this progession, HOTH.

    We just never freaking know do we?

  • eag1954
    eag1954 Member Posts: 119
    edited July 2012

    In agreement with you Kathy.  Hoping that the progression is stopped also.  Nothing but positive thoughts for all of us that are being treated with Halaven.  Cant wait for the day when someone on this thread post that they're NED due to Halaven.  As far as I've read that hasnt happened yet  but I'm praying that it does.  Well I have chemo in the am so my anxiety level is starting to rise.  Going on a road trip next weekend after week 2 chemo and praying that I feel well enough to enjoy myself just a little. 

    Just out of curiosity everybody, how long have you been on Halaven?????  I started end of April 2011.

    Elizabeth

  • holdontohope
    holdontohope Member Posts: 44
    edited July 2012

    Elizabeth,  My WBC plummeted after first Halaven treatment, I was dehydrated, and had a slight fever.  They treated me by giving me IV fluids for two days, along with four days of Neupogen injections, and an oral antibiotic.   Since my fever didn't climb, I was able to avoid the hospital.

    Thanks for your good wishes; you too K-Lo.

    I will be switching to a new oncologist in about two weeks and that is making me feel more hopeful.

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

    HOTH, There was a little Q&A on this site where I learned that the WBC drops are usually with the first treatment.  Has been true for me.  In fact, since i had to take 6 weeks off for rads, my first tx back knocked them down.  Bounced right back tho.

    I started this year.... march 6.

  • holdontohope
    holdontohope Member Posts: 44
    edited July 2012

    K-Lo, thanks.  Maybe my onc will increase the dosage if I do okay with this round.  So far, so good.

  • eag1954
    eag1954 Member Posts: 119
    edited July 2012

    I am so SOB today.  Relying heavily on my oxygen.  Its impossible for me to walk up the stairs without it!!!   Had chemo and hoping that the SOB doesnt last, and that its just a result of my allergies!!!!

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

    Eag, what is up?   What do they say, are your airways blocked?   Have you seen pulmonary?

    Ok thats cause now could you get a stairway chair?   My aunt has one.  I wonder if insurance will kick in....  

    Sorry I know you probably want understanding not suggestions.   That really sucks.  How many cycles ahve you had now?

    Just stinks to struggle like that.

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

    Forgot to celebrate SPAM's regression and stability.   Congratulations there, SPAMgirl.

    Hope for one is hope for all.

  • eag1954
    eag1954 Member Posts: 119
    edited July 2012

    I'm with you!!! Congrats Spam!!!!!!

    In my lala land Kathy i guess I just thought it would go away...definately will visit getting info on the stair lift... afraid that my year+ stable boy is gone.  I guess thats the first thing we do is think the worse.

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

    Whatever is causing your SOB and my SOB, Eag, I find that climbing really sets me off.  I can easily do 30 mins at 3mph on the treadmill and then lift weights.  (child level)

    But one flight of stairs takes 15 minutes recovery.

    Next week, I visit TN at 1000 feet above sea level.  Wonder how that will feel... anyone experienced this?

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited July 2012

    I'm with you guys on the SOB walking up the stairs.

  • menan
    menan Member Posts: 18
    edited July 2012

    Well Gals, I missed you so I am back!  I had a month vacation from Halaven because my liver enzymes were triple normal, my wbc was too low and my neurapathy had kept up to my hip and I had the family reunion in KC!  I took that month to 'get healthy'  and feel normal. And had a GREAT time getting to know my cousins again!  BTW one of my probems is yeast in the mouth so I watch my bread (yeast) and sugar (yeast feeds on it) intake.  A cousin at the reunion told me a friend of hers used coke as a mouth rinse to control thrush.

    It was so good after 2 and a half years of chemo to feel normal!!  After 6 months of remission while on Xeloda, my lung mets returned so I started Halaven in February 2012.  My PET Scan this month showed 4 spots in my right lung area but were not considered cancer so might just be scar tissue.

    Now after my Cycle 5 back to feeling tired and appetite problems.  Onc halved my dose this time (he had been reducung it all along so now it is a low as it can be) and remarked I couldn't stay on Halaven forever.  The other thing I did was to get meals on wheels since I am over 60.  It helps to not have to decide what to cook.  SOB is not a problem for me unless I climb the 20 steps to my apartment, but that is hard on my sisters too!  

    Elizabeth, my PA told me to expect problems breathing in this hot humid weather we are all enjoying.  Praying that is the  reason you are noticing  more sob. 

     Welcome HOTH and Mari55.  I don't often post but I'm cheering for all of us!  We can LIVE with this!!!

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

    WB Nancy.  Why cant we stay on Halaven forever?

    I'm getting embarrassed with the talking-SOB.  It seems to be tied to any amount of nervousness, like the difference between talking to my Dh or a friend I have not seen in a while.  They must enjoy that too!

  • menan
    menan Member Posts: 18
    edited July 2012

    Kathy, I think he was warning me he is thinking about moving to another drug if my SE get worse.  I start cycle 6 Fri so I will ask him.  I was approved for 99 doses in a paper a nurse had.   Also my hair is growing back in, is anyone else having this happen?

    I started Halaven in March of this year.  It has worked good for me  but my dosage is now half what it could be.  Had barely any noticable SE so hope it continues working at this dose!!

  • eag1954
    eag1954 Member Posts: 119
    edited July 2012

    Hey Menan...we've had some days in the 100's and for me going outside can take my breath away.  I know I've probably asked a thousand times..chemo brain is horrible!  Anybody else experience weakness???  Lack of appetite??? It seems that I felt better last year this time..now I'm weak appetite hit or miss, just not feeling good  at all. 

  • holdontohope
    holdontohope Member Posts: 44
    edited July 2012

    I went in for my third treatment of Halaven today.  WBC too low again...so will have to wait until next week.  The good news is that after just one treatment my tumor markers dropped by about 300!   Was so happy to hear that!  Still have a long way to go, but at least it's in the right direction for now.

    Elizabeth, I'm tired alot and definitely have less of an appetite.

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