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Halaven - Day 1

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  • PJB
    PJB Member Posts: 150
    edited March 2011
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    Carol, the Bahamas sounds wonderful! I'm so glad you felt good for the trip.

    Such a drag tho about the wig hurting. I just bought a new one yesterday. I wear turbans most of the time, but wanted a new "going out" wig. 

    I'm going to just taxotere this round, as the carbo tanked my platelets and made me postpone chemo. I wonder what WOULD happen if you ate the leaves.... make some tea out of them... uh, maybe not.

    Oddly, the taxotere seems pretty easy this time. But then, I've just had the one treatment. I'll probably be eating my words this time 'round. Thanks for asking.  

  • jneumann
    jneumann Member Posts: 24
    edited March 2011
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    Second dose of Halaven down, no Tykerb we decided to cut that out to see if it stops the diarrhea.  now i am constipated but that has got to pass too.  besides miralux any thoughts, it does taste nasty! 

    am looking at spring gardening magazines and cannot wait.  hoping my friends will come plant a garden for me.  cannot wait for spring!  botanical gardens, take a deep deep sniff for me!  must smell like heaven! 

    sorry about the venting last week, was really a crying depressed week for me.  my doc upped my anti depressants so hope those help.  need to find someone local to talk to and make me laugh or just a good hug once in a while.  today a fresh hot cup of coffee would be good.

    Joann

  • PJB
    PJB Member Posts: 150
    edited March 2011
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    Joann, I hope you find the answer for the constipation vs. diarrhea question.... if it isn't one thing it's another... and don't worry about venting here, it's what we're here for. I hope you do find someone local to talk to and that you feel better with the coming of spring!

    Hope the Halaven works wonders

    Paula 

  • Nancycare
    Nancycare Member Posts: 25
    edited March 2011
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    Hello All

     Nancy  had the second dose of her second halaven cycle this morning.  Next week is her off week.  She recovered well from her recent hospital stay for pleural effusion drainage surgery, high fever. severe spinal back and femur bone pain.  They thought she also had  pneumonia  but that proved negative. She was well enough to continue halaven last wednesday.  Since then she had slight to moderate fever every day even today.  This could be a good thing because as I mentioned before her doctors all said it could be a sign that cancer cells are dying.  Her latest scan in the hospital showed that several lesions were reduced in size. The back spinal pain and femur pain was due to bulging disc in the spine  and pressure on sciatic nerve.  She also felt very tired, fatigued, at times confused, unsteady, quifering  and disoriented from time to time during parts of the days all week long.   She definetly did not have all those bad symptoms   during her first  21 day cycle on halaven.  This could also be caused by some very strong medication given in the hospital. The side effects for some of the medication  are similar to the above symptoms  mentioned.  Some of these side effects  lasts for weeks and even months after a person stops taking it.  We'll see what happens this coming week after todays treatment.  One positive thing is she can still drink and eat to keep up her strength no nausea.   Congratulations to all of you who are having good results with Halaven.  May God bless us all with the cure.  Nancy and Steve

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited March 2011
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    Hello Halaven users:

    I met with a nurse practitioner today regarding Halaven and I believe she gave me misinformation regarding the cycle.  From this thread and other info on the Internet, I gather that the cycle is a 21 day cycle with Halaven given on the 1st and 8th day.  I would have the third week "off".  Is that correct?

    Also, it seems that they do not give you premeds.  Just saline and a 5 minute injection through the line?

    Thanks for any information that you can provide!

  • jeanne46
    jeanne46 Member Posts: 52
    edited March 2011
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    It is a 21 day cycle, just as you thought.  And all I ever got was saline, the 3-5 minute "push" and the rest of the saline. Some here have mentioned getting pre-meds.  The Halaven trial I was about to enter last November (before the drug was approved) also did not include pre-meds.

    I think there is confusion about Halaven by health professionals because the drug is so new, some offices don't have any experience with it.

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited March 2011
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    Jeanne46:

    Thank you for your reply.  Am I also correct in assuming that the drug is only given on the 1st and 8th day of the 21 day cycle?  Yikes, I'm afraid to think of a drug without premeds.

  • pattih
    pattih Member Posts: 31
    edited March 2011
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    Yes, a lot of healthcare providers are not fully educated yet. I received a bill for $5,500. I call the billing department and of course they said that is what I owed after insurance. (my deductible is $3600 so there is no way) I called insurance and they got to the bottom of it. Billing didn't know what Havelin was so they coded it under a generic general code and ins didn't appreciate 5K in generic billing. Could you blame them?

  • clemson93
    clemson93 Member Posts: 36
    edited March 2011
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    I am on the 21 day cycle and I also get premeds. My onc knows I get nauseous pretty easily, so that may explain the premeds with me. The whole process takes about 45 minutes. So far, so good. I've noticed that on the weeks I get the Halavan only, I have almost no side effects other than some fatigue. When I get the Halavan and Neulasta (week of day 8), I have 2 days of feeling weak, having a dull headache and being tired. That usually starts 3 days after treatment. I am getting neuropathy with this drug, though. I managed to avoid it with Taxol and Abraxane but not this time. Does anyone have any suggestions other than B6?



    Susan

  • PJB
    PJB Member Posts: 150
    edited March 2011
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    Susan, my onc recommends L-glutamine powder (tsp 3 times a day in some beverage) for neuropathy. Not that I've been good at doing it, but I've got a giant bottle. :)

  • jeanne46
    jeanne46 Member Posts: 52
    edited March 2011
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    nurse-ann:  Yes you are right about Day 1 and Day 8 (off Day 15).  You may require a Neulasta injection on Day 9.  Some do; some don't.

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited March 2011
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    Thank you all for the information that only you can provide.  As you all have said, this is so new that even some of the providers can't help with all the questions.

  • Helmie
    Helmie Member Posts: 10
    edited April 2011
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    Hello all you Halaven (Eribulin) people. I got my 3rd treatment today, been loosing a lot of hair. Anyone on this drug longer, and can tell me what happens with the hair? I also have bone mets, and started on Xgeva 2 weeks ago. On top of that my onc started me back on Faslodex today too after a one month break.

  • pattih
    pattih Member Posts: 31
    edited April 2011
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    I started my 5th round Friday. I will go 6 rounds total then scanned again. I am also on Zometa and 2 Faslodex shots a months. I lost most of my hair but I still have enough to get by if it isn't too windy! I usually wear a ball cap and it looks like I have more than I actually do,

  • Helmie
    Helmie Member Posts: 10
    edited April 2011
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    Thank you Pattih for your helpful info. My hair is very long, and I think it might be better if I cut it a little shorter in preparation of the things to come. This will be the 3rd time I'm loosing my hair due to chemo treatments - this seems to become an un-welcome routine - lol -

  • Annie4
    Annie4 Member Posts: 27
    edited April 2011
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    Hi all,

    Took a break from the boards.  Sometimes too much for me to take in.  Just wanted to say that I'm now in my fourth cycle.  Just a recap for some of you new people.  I lost all of my hair in the first cycle.  It took until the 3rd until all eyelashes and eyebrows are gone.

    I did just get my tumor marker back yesterday.  It had gone down about 20% after the 2nd cycle and now it just stayed steady.  But symtoms of the cancer going away - fluid in my abdomen, vomiting, etc.  Wish the marker would go down more since it is still high, but I'll take it.  Hoping to get off chemo by the summer.  My nails have just started to split but ok.  Have had low WBC so need to take Neulasta on day 9 of cycle. Don't like that.  Had a blood transfusion 3 weeks ago since my RBC count was 8.  It made me feel GREAT!!

    That's about it!  So pretty good news so far from me. Wishing you all good luck.

    Annie

  • simba
    simba Member Posts: 3
    edited April 2011
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    Hi, just wanted to mention that the L-glutamine for neuropathy also comes in capsules (I find it easier than having to mix the powder in water or juice). You can take up to two capsules in AM and 2 in PM. Really helped neuropathy pain for me.

  • Annie4
    Annie4 Member Posts: 27
    edited April 2011
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    Thank you Bonnie.  Hugs back to you!

     

  • clemson93
    clemson93 Member Posts: 36
    edited April 2011
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    Hello, fellow Halavanites :)  Good news!  I just found out that my tumor markers went down another 100 points after my third cycle.  I am down from 1020 originally to 320 after 3 cycles.  This drug is working wonders for me so far.  I just hope it lasts a while.  Helmie, I have had 6 treatments and my hair has thinned very little.  It was already thin from the Abraxane, but what was left, actually started growing and is mostly still there.  I keep expecting it all to fall out, but maybe it will hang on.  Annie, that is great news about your diminishing symptoms.  As far as the markers go, I have always heard that it is more important that they stay stable or go down.  How much isn't as important.  I hope everyone is doing well.

    Susan  

  • PJB
    PJB Member Posts: 150
    edited April 2011
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    Susan, that is fantastic! Aiming for 0 tumor markers..... Best wishes to all you Halavenites

    Paula

  • Nancycare
    Nancycare Member Posts: 25
    edited April 2011
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    Hello All

    Its great to hear several people are getting good results from Halven and tumor markers are coming down.  I understand there are different kinds of tumor markers.  CA 15   Ca 19  and others .  Breast cancer metastatis uses the CA-15  marker. After the first series of Halaven we were engcouraged that scans showed several cancer lesions were reduced in size.  Her CA 15 tumor markers were 88 however after the second series of halaven her tumor marker spiked to 123.  Her ONC said it may have went up due to recent surgery to remove pleural effusion and or pneumonia fluid in her chest/lungs  and to see by video exploration how extensive the cancer was in her lungs. CT scans reveiled areas in the lower area of her left lung may be cancerous or just scar tissue.  We did not know that surgery could spike tumor markers.  We also  learned there are  several other factors could affect turmor markers therefore giving a false reading.   She recovered from surgery and just finished her third complete series of Halaven  this past wednesday.  She is now on her off week.  Nancy also had an epidural cortizone injection ten days ago in her lumbar area to relieve  ocasional severe pain in her lower back which radiated to both thighs.  They found a bulge discs in her spine which was affecting her sciatic nerve causing great pain from time to time. At first we suspected her pain was due to cancer in the bones cause MRIs showed she does have scattered cancer nodules in her in spine, stenum, both iliac hips and in one rib and both femur thigh bones.  However since the epidural cortizone injections she has been almost pain free in her back and thigh area. We anxiously await our next scan to see if the Halaven is working as it did prior to surgery.  We don't want any of her bones to break.  Her ONC said it takes longer sometimes many years when it is in the bones .  She had it in her sternum five years ago with still no pain and from there it spread to other parts of her body.  This past several weeks on halaven she deals with night sweats, slight temperature rise 100 to 103 upon waking in the mornings. It goes away with tylenol .  She experience  tiredness and fatigue from time to time, slight head aches, occational, nausea and  diahrea.  Some of these syptoms could also be caused from side effects taking neurontin for neuropathy and percocet for pain killers.  She lost ten pounds in one week and  is now 127.  The chemo and meds for side effects can cause  lost of taste in her taste buds causing her not liking what she eats.  Doctor gave her appetie enhancment pills and past several days she been eating pretty good.  It could have been my bad cooking so we go to her favorite resturants for dine in or take outs.  Past few days she felt well enought to go shopping for clothes as she lost weight.  Normally she was always in the  the 150 range.   We're headed for Hawaii this coming Monday the 18th for seven days. We booked it in Decemer last year before she was told she had to have chemo.   Her ONC gave his approval and said  have fun  try to stay in the shade or wear sunscreen. She needs more excercise and the  trip will  will be good for her spirits.  The entire family is going all the children their  husbands and wives and five grand children. It started with just me and Nancy and one of my daughters her husband and two kids but now all the rest have joined in on the vacation. We did this once before about 10 years ago during thanksgiving holiday week.   We could not get on the same flight or the same day but will be at the same hotel most of the 7 days. ........... Please no more earthquakes,  tsunamis or rain while we're there. .  Thank you all for sharing and your support .  May God Bless us all with the cure!!   Nancy and Steve

  • PJB
    PJB Member Posts: 150
    edited April 2011
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    I hope Nancy and all of you have a great time in Hawaii. That will be a welcome break and give you time to relax. Don't worry about the tumor markers. They do jump up and down and, to me, that doesn't seem like a huge jump. Hope the Halaven is working and glad the pain is subsided.

    Paula 

  • Nancycare
    Nancycare Member Posts: 25
    edited April 2011
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    Hello Lowrider54

    Your mysterious pain from lower back radiating to the front area and thighs both you and Nancy experienced may have been caused by spinal disc bulge pressing on the sciatic nerve as explained in our last post.  Nancy and SteveI  

  • Nancycare
    Nancycare Member Posts: 25
    edited April 2011
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    Hello PJB

     Thank you Paula.  Yeah we're completly in the fog when it comes to tumor markers.  Our ONC said he's seen some in the thousands.  Nancy and Steve

  • clemson93
    clemson93 Member Posts: 36
    edited April 2011
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    Nancy and Steve, I am having the exact same side effects with the Halavan. I seem to feel worse after the second treatment of each cycle versus the first. I am also taking Neurotin for neuropathy. I am sending good mojo your way for great scan results. Have a wonderful trip!



    Susan

  • clemson93
    clemson93 Member Posts: 36
    edited April 2011
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    Also, what dosage of Neurotin is Nancy taking?



    Susan

  • Nancycare
    Nancycare Member Posts: 25
    edited April 2011
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    Hello clemson93

    I just got back from getting Nancys favorite take out dinner. This is the fourth time in the past 6 days. same resturant.  Well anything that enables her to eat and get some nourishment. She felt nausea this morning but got over it with anti nausea pills and  an hour ago said  she was hungry. Thank you for your good mojo.  We'lll welcome  all we can get.  Nancy prescription reads take two 300 mg pills three times a day.  Kinda hard doing that.  She wakes up at different times each morning around 9.a.m.  However we told her ONC taking three late afternoon around 5 pm and three around bed time 11 P.M works better.  This helps cause she won't be so sleepy during the day. Some days are good meaning alert, cognizant, upbeat, with some energy  and some days are weak,tired sleepy, dozing of and on.  Occational constipation, and  mild diarea, and slight head ache.  Night sweats are constant, and slight fever 100 to 103 almost every morning past few weeks except for past few days no fever temperature at all when waking in the morning.. I hope this info helps.  Thank you   Nancy and Steve

  • Nancycare
    Nancycare Member Posts: 25
    edited April 2011
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    Hello again clemson93

    Slight mistake on dosage the prescription reads take two 300 mg pills three times a day not two every six hours.  I just edit the post.  Like I said we prefer three at five and three at around bedtime 11 pm.  Her ONC said if it works better do it just as long she does not exceed six pills in one day.   Nancy and Steve

  • Unknown
    edited April 2011
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      Hello Ladies,  My eyes are really tired after reading this thread from start to finish, but I am so glad to have found it as it gave a lot of info.  I saw my onco today and he wants me to start on Havalen next Wed.  He gave me the info sheet and it lists the main 4 SEs as nausea, fatique or tiredness, hair loss and constipation.  I have been constipated for about 9 months anyway due to Navelbine and Gemzar.  I have liver mets which have increased in size and number which is why we are looking for a new treatment.

    One thing I am curious about...I read about the extreme tearing, think it was a Jeannie who posted that.....have any of the rest of you had that.  I  actually had little tubes put in my eyes to correct that after I did abraxane.   And how about neuropathy?   My onco said neuropathy was not a SE with this,but I read that is could be.  I have been  very fortunate with the treatments that I have done thus far and am hoping that there will not be a lot of them with Havalen?  Also someone mentioned nails?  Have any of you had your nails lift and become loose. And what's with the sore throat?....did you all get that.

    I really appreciate any info  you can give me about your experiences with the drug.  Thanks so much.   Marybe

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited April 2011
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    I'm just on my second dose - getting used to the SE's with this one.  I would say that constipation is the first one.  My eyes have not been running.  I do have neuropathy that comes and goes but that may be leftover from the carbo/paclitaxol. 

    One thing I have noticed for 2 - 3 days after an injection is fatigue that comes out of nowhere - I feel incredibly sleepy - can't hold my head up.  I had an episode tonight around dinner and just had to go to bed for a couple of hours.