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Halaven - Day 1

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Comments

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Jan, Yes, the P word is confused with the H word, I agree.

    Its a new discipline....this article explains it best for me (link below)

    "Unlike hospice care, which comforts people at the end of their lives, palliative care helps people who may have months, years or decades to live.

    The concept developed after hospice care became popular and proved effective but was limited to end-of-life services, said Dr. Warren Wheeler, senior director of medical care for Nathan Adelson Hospice and the director of Sunrise Hospital’s palliative care program.

    Medicare only reimburses hospice care expenses for patients who are not expected to live for more than six months.

    But doctors learned some patients with terminal illnesses will live much longer, and other patients need help managing pain, arranging their affairs and making medical decisions even if they are expected to live for a long time, Wheeler said.

    That’s where palliative care comes in, bridging the time between acute care and hospice care, Wheeler said........"

    http://www.lasvegassun.com/news/2011/oct/05/nevada-makes-big-strides-palliative-care-seriously/

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Spam,   How do I get my husband to understand the sleep thing?  He knows I have pretty good regression so i think he wonders why I would nap longer than 3 hours.   Is there a physical scientific explanation I can give him?  So many men have concrete thinking....

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited January 2013

    It's still chemo and is a poison and your body is working really hard. It's still the same chemo you were taking at the beginning of treatment when your tumors were larger.



    Does he take naps when is has a cold or the flu? Your body gets nailed with enough drugs to equal a few bouts of the flu each week.



    I hope that works. There was no way I could have gotten out of the extra 10 hours of napping. It's just one of the SEs.

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Good little summary of positive news on halaven. So funny when they get excited by 2.5 months but that's a median. Or mean I forget which. In other words we will get longer. :@)



    http://www.pharmatimes.com/mobile/11-03-03/survival_benefit_with_eisai_breast_cancer_drug_halaven_confirmed.aspx?r=1

  • hightide1
    hightide1 Member Posts: 46
    edited January 2013

    Ladies, I have been reading the thread for weeks. I think I share a history similar to K-Lo's. My mets were originally lung and bone in 2011. I have spent most of 2011 and 2012 trying to find a chemo drug that would work. In 2011 had radiation to right hip to control pain and right femur to prevent fracture. Improved and was able to avoid rod placement. Lots of interesting chemo SEs but no positive response.

    Started the year with brain mets. Got that under control with gamma knife. Had mets to both retinas. Radiation was successful. Had tumor on spinal nerve root making a mess of control of my leg. More successful radiation. Lung tumor pressing on bronchi = more radiation. Recurrence of brain mets in Sep but only one very small tumor this time as opposed to 5 in Jan ( with one at 4cm) so this was an excellent report. Successful gamma knife again. MRI of brain in Dec was all clear. PET in Dec showed 'amazing response to Halaven.

    I developed osteonecrosis of the jaw from Zometa. Right side has healed. Going for debridement of left side to see if we can get it to heal.

    Cataracts developed following retina radiation. I am scheduled for first repair the end of this month.

    I feel truly blessed to be here since I was told last Jan to 'put my house in order'. Radiation kept me alive until I was placed on Halaven. It has been a godsend. It is the first drug I have been able to tolerate full dose. My hair thinned but grew back. My labs have remained normal. Fatigue and neuropathy have been the biggest issues but compared to my experiences with Taxol and Xeloda, this is a walk in the park!

    Reading your notes has been very encouraging. I have been through anger, fear, despair and denial. I have fought and occasionally surrendered and gone down for the count. But for some reason hope returns and there are periods of serenity and acceptance. I hear all of this in your notes and it is comforting.

    I am in that 'sweet spot' when a drug is working and I have been given quality time. Like all of you, I measure in months. But I am here!

    I wish all of you the good things that you deserve.

    "Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all." Emily Dickinson

  • jcb51
    jcb51 Member Posts: 31
    edited January 2013

    Glad you're having good results and few SE's with Halaven, hightide. You've really been through it! I'm glad you were able to turn things around and beat their prognosis. I had my first tx of my 2nd cycle of Halaven on 1/9 and so far very few SE's. I feel better right now than I have in months and I so hope it's because Halaven is doing a good job! Will find out in a couple of weeks when we do tumor markers.

    Jan

  • hightide1
    hightide1 Member Posts: 46
    edited January 2013

    I will keep you in my prayers. I hope Halaven treatment gives you a New Year's gift

    Barbara
    Dx 7/8/2008, DCIS, 6cm+, Stage IIIb, Grade 3, 1/6 nodes, mets, ER+/PR-, HER2+ Chemotherapy 07/15/2008 Adriamycin, Cytoxan, Doxil, Taxol, Taxotere Hormonal Therapy 03/01/2009 FemaraTargeted Therapy 02/10/2011 HerceptinChemotherapy 03/15/2011 Gemzar, Ixempra, Navelbine, XelodaTargeted Therapy 04/10/2011 TykerbChemotherapy 09/02/2011 HalavenHormonal Therapy 12/01/2011 Aromasin
  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    High tide we must talk! You're the first eye mets I've met in here! More later when I wake up! Good to meet you hope you feel we'll.

    Kathy

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Y'all, I didn't want to go for tx Wednesday.  Felt yucky, sore throat, sinus flooding, sleepy, some nausea.   MO: "Please try to come in (if no fever)".

    Well, the WBC'S were low which explains low resistance to ugly  head cold, vaginal infection, blah blah.   They hydrated me a lot and I continued with juices and salty foods followed by !0 hours of dead sleep.  

    And, tell me, How much fiber can you eat?  How many senna can you take and how many hours can you sit on the porcelain throne....   Massaging, pushing, feet up on support....    Any other ideas?

    Thank god my DH supports whatever I need to do.  No demands or expectations.   

    Doggy even gives in  to "no walk".   Such nice guys.

    Pushed self to prep for cleaners today (with a little help from my friends Rit and Hydroc).    Happy to see grand- da and had good fun w her.  She appreciates everything.  

    Just journaling life on Halaven for 1 year and counting....

  • hightide1
    hightide1 Member Posts: 46
    edited January 2013

    I find it very encouraging to see you on Halaven for a year. Did you find it hard to predict the down days after chemo?

    Most of my other drugs I knew the time frame but this one seems harder to learn the pattern. Mostly I have fatigue and nausea but am never quite certain when they will hit.

    I don't think mets to retinas happens very often. I was terrified when I was first told. I was convinced I would lose my vision. It was also the first time I panicked during a treatment. Did you find the mask hard to deal with?

    My retinas have been clear for a year. I did get cataracts as an SE.

    I am having the first repair on Monday! I hope to be able to see more than 4 feet in front of me.

    I take gabapentin for neuropathy and one of its SEs is diarrhea. This actually works in my favor with the constipation from Halaven! Have you tried glycerine suppositories?

    I hope next week is better for you in every regard. I hope some remnant of your immune system will help battle the head cold. Hot tea with honey and Netflix is my recommendation.

    Take care.

  • jcb51
    jcb51 Member Posts: 31
    edited January 2013

    Hightide, I'm glad the Halaven is working for you and that you're able to tolerate it.

    K-Lo, it's encouraging for me also to see that you have had luck with Halaven for a year. It sure looks like it's working for me! The skin mets on my chest are disappearing and the bigger ones on my left shoulder have shrunk considerably. It's been really rough on my blood counts. I've had to take shots of Anaresp for several weeks and last week I had to get IV iron. I've also had to get two Neulasta shots so far.

    In addition to the skin mets going away, I'm breathing better and I feel better than I have felt in months. Onc listened to my lungs and said he couldn't believe how good they sounded. I have labs drawn tomorrow for blood counts and tumor markers. Will get TM results on Wed. I'm anxious to get them. If TM's have not dropped, I'm going to ask for a lung CT because with all the improvements I've had I KNOW this chemo is working, even if the TM's say otherwise. I've taken Navelbine and Gemzar, both of which worked for a while and then quit. Neither of them had any affect whatsoever on my skin mets.

    I hope I can get at least a year out of Halaven.

    Jan

  • hightide1
    hightide1 Member Posts: 46
    edited January 2013

    Jan,

    Keeping you in my thoughts and prayers. I am glad you are feeling good. It is wonderful to catch a break with a drug that works.

    Here's hoping it stays with us for many months to come!

    Have your bone mets been stable?

  • jcb51
    jcb51 Member Posts: 31
    edited January 2013

    Hightide, I can't really tell about the bone mets. I need to have a bone scan. My bone pain has greatly decreased, so I'm hoping that's because my bone mets are at least stable. I only have to take a pain pill at night before I go to sleep. Before I had to take at least 3 a day.

    Jan

  • hightide1
    hightide1 Member Posts: 46
    edited January 2013

    Same here. I have been able to quit Fentanyl and have cut hydrocodone in half...literally.

    This drug is a blessing. Xeloda worked for me but kept putting me in the hospital.

    Fingers crossed for you until Wed.

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    WOW, JAN!    Direct evidence of improvement from your symptoms!     My MO Says the TM simply do not correlate for me, so I am happy to ignore that.

    Barbara, I wince at the cataract surgery.  But, They say one's vision is so much better afterwards, though.

    For me, 2012 opened with frequent coughing, inability to get enough air to talk and walk or really finish a sentence.   Brain and eye tumors attacked and were beaten back with Rads.  Only problem with eyes rads was the vigilance required to keep eyes still.

    Within 6 months, eye lesions shrunk and continue to do so, brain lesions shrunk and my breathing and talking went back to normal.

    Now, I do have new brain lesions, breathing is slightly quirky and but eyes continue to do extremely well.

    Regarding bone and other tumors:   They tell me the bone will always have the same appearance on scans.  What matters is how you feel.  I have forgotten I have spinal mets!   Xgeva and a little rads, baby, and I'm free to hurt my back in normal ways.

    Eye doc says retinas will always have "lesion" appearance but as long as it remains flat and shrunken, we are happy.

    Glad we found each other you guys.

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Ya, Jan, I got some gloves from docs office in case I need to work directly at exit site...... suppositories, sheeesh!   How old am I, 90?   Oh well, time for bowel fetish!

  • K-Lo
    K-Lo Member Posts: 826
    edited January 2013

    Did I already ask this, anyone get explanation of how long we can be on Halaven?  I find this:

    We also report on a 42-year-old woman.......Upon receiving eribulin (in a clinical trial setting), she remained in stable disease for 21 months and generally tolerated eribulin well (except for thrombocytopenia, which resulted in mild, non–life-threatening gastrointestinal bleeding and was resolved with a dose reduction). This case is consistent with findings from phases 2 and 3 of eribulin in the setting of heavily pretreated metastatic breast cancer. It is discussed in the context of the current treatment goals and treatment modalities in the late-line metastatic breast cancer setting

    http://www.sciedu.ca/journal/index.php/jst/article/view/602/1135

  • hightide1
    hightide1 Member Posts: 46
    edited January 2013

    The article was interesting. Thank you. I am printing and putting it in my info file.

    Hope you are recovered from your head cold.

    How are you doing in general?

    I don't know if it is chemo brain or disappearing threads. I know you posted an update on bone mets but I can't find it. Definitely a learning curve involved in navigating the boards.

    I had my first cataract repair on Monday. They had worsened significantly following the retina radiation. I am healing and the difference in my vision is amazing!



    Did you develop cataracts after your treatments?

  • Runnr
    Runnr Member Posts: 11
    edited February 2013

    Hi ladies, my onc is considering this as my next chemo.  Looks like the Navelbine isn't doing its job.  

    I'm wondering how often you get the chemo?  Definitely not looking forward to this.

    Thanks.

  • hightide1
    hightide1 Member Posts: 46
    edited February 2013

    I receive Halaven two weeks on and one week off. It is a fast 7-10 minute push. I find it easier to tolerate than the Navelbine.

    My hair has thinned a little but it grows back and then thins again. My labs are holding steady. This is the first drug that I have been able to stay on full dose.

    My biggest challenge is the fatigue. I am going to try Ritalin to see if I can get going again.

    I started this Sept. of last year and it has been a miracle drug for me. Tumors have resolved and the ones remaining are shrinking.



    I hope you have the same easy time and the same phenomenal response.

    Barb

  • ButterflyLady
    ButterflyLady Member Posts: 9
    edited February 2013

    I will be starting Halaven next week.  In September they found I had a spot on my liver and they staged me at stage 4.  I had the spot ablated in October.   At the end of November I had a PET scan and it showed nothing new but just that spot they ablated.  He then put me on faslodex shots.  Yesterday I had another PET scan and my liver lit up like a Christmas tree.  Mets all over it and a spot on my lower spine.  Needless to say, I am devasted.  I have had my cry and now ready to starting fighting again.  He has taken me off the faslodex (it seems hormanal treatment just doesn't work for me at all) and now I will be starting Halaven and Zometa next week.  Any advice would be well appreciated.  Blessings to all of you fighting this horrible evil beast.

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2013

    Its a good drug.  I have been on it about a year and had significant regression    symptoms are mild-moderate esp compared to other I took.  lots of fatigue which is catching up to me, I wonder if it is cumulative.

    Nothing works forever, but this is worthwhile.

    Anyway, its worth thee 3 trips per month.

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited February 2013

    I made it for about nine months, but I had significant regression every cycle. It was still shrinking existing tumors when a new crop showed up. I was super tired 3 days after treatment and my fingers were numb.

  • jcb51
    jcb51 Member Posts: 31
    edited February 2013

    I started Havalen Dec 19th. I take it for two weeks on and one week off. Just finished my 3rd cycle. During first cycle my skin mets showed significant shrinkage and my breathing greatly improved. During the 2nd cycle I started feeling so much better overall and ever since I have felt better than I have in many months. This is by far the most tolerable chemo I've taken. No nausea issues, no increased neuropathy and no distorted taste which makes eating a pleasant experience again.

    Last month's TM's went down only 3 pts, but stable is good. I have a lung CT scheduled for Feb 19th to see how well it's working on my lungs.

    I had more problems with fatigue during my first cycle. That has eased up with each cycle. My biggest problem is the impact it has on my blood counts. So far it hasn't attacked my platelets, but it hits my RBC's and WBC's pretty hard. I get booster shots for both (Anaresp for RBC's & Neulasta for WBC's) which really help.

    Previously I was on Navelbine and then Gemzar. Both worked for a month or so and then quit.

    My onc told me 49% lose their hair on Halaven. So far I've been one of the lucky ones. My hair had thinned quite a bit on Navelbine and Gemzar, but has started to grow back in on the Halaven.

    I hope Halaven works well for all of you.:)

    Jan

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited February 2013

    My hair thinned and I made the mistake of playing with it until it fell out. I shaved it and my started growing back after a couple of months. I really wish it was still working for me.

  • Runnr
    Runnr Member Posts: 11
    edited February 2013

    Thank you everyone for sharing your experiences with halaven.  I'm more inclined to try it now.  Thanks a bunch!

  • cromercrab60
    cromercrab60 Member Posts: 5
    edited February 2013

    Hi. I have day 8 treatment cycle 5 tomorrow. Tolerating this a lot better than navelbine. Not as draggingly tired and I have an appetite! Going to have a trip to the seaside for a few days Thursday. Norfolk. I'm in England by the way. I have some issues with my pelvis, where they think I have a suspected fracture. Keeping on top of it with painkillers though



    X Sarah

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2013

    Oy!   Cromer, so glad this is easier for you.   The only reason i have any nausea is because I hate taking zofran which adds to constipation.  And the nausea is mild for sure.

    Hope the weather is lovely at the seaside.

  • K-Lo
    K-Lo Member Posts: 826
    edited February 2013

    Heavenlies,

    Have your counts been borderline yet they give the treatment?  Mine have been on the edge and we go on.

    Suddenly, yesterday, MO says she's gonna turn it down because the counts will likely be lower next week, day 2.  I cant keep my big mouth shut and said, "Oh it always bounces back".  But she was determined.   So that will be NICE.

    No matter what comes down, will you all please keep joking with me?  That's how I've decided to cope for the next 4 months. 

    Thanks and Love

  • SPAMgirl
    SPAMgirl Member Posts: 137
    edited February 2013

    Have you been receiving the full dose? If you have been, they can reduce it.

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