Fill Out Your Profile to share more about you. Learn more...

Halaven - Day 1

Options
1111214161798

Comments

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited May 2011
    Options

    Just completed two cycles and had scans and TM's tested.  First, the good news.  My usually reliable TM's dropped 2203 on the 27.29 and 10.8 on the carcinoembryonic marker after 2 cycles.  However, I now have visual progression in spleen, liver, and maybe bone marrow for the first time in 2 - 2 1/2 years.  Strange mixed messages.  I have been taken off of Havalen and started Doxil yesterday.  I have to state again that I was getting Havalen at a reduced dose (1.82 mg) so I don't know how this muddied the waters.

  • pattih
    pattih Member Posts: 31
    edited May 2011
    Options

    Sorry to hear you have progression. I get my results back tomorrow after 5 months on Halaven and I am not feeling positive. It seems like it has failed for most people on this board. DAMN and deep sigh.

  • Unknown
    edited June 2011
    Options

    Nurseann, The CA27/29 dropped over 2,000 and the scans show progression?  What does your onco say about this?  And pattih....it's failed for most?  I did not get that impression and certainly hope I am not losing my hair again for nothing.  The woman I met at my onco's office has gotten very good results and she started on it in Jan.  Now I am going to start worrying.....treatment #4 is tomorrow. 

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited June 2011
    Options

    Marybe:

    In my way, I see your hair loss as a positive thing - I actually grew a lot of hair on Halaven.  The first time in 2 1/2 years, I have body hair and had to do my legs so your hair loss may be a sign that it's working.

    I sent an email to the Onc yesterday and I'm waiting to hear back.  I titled the email "mixed messages".  I will be at MD Anderson for a consult before seeing my Onc again - I am very concerned about the combination of spleen, platelet, and bone marrow issues with my Lobular history.  As I said previously, I was on a reduced dose of Halaven because of my platelets and there is some suspicion that these little Lobular critters could be in my bone marrow.

  • pattih
    pattih Member Posts: 31
    edited June 2011
    Options

    Ok so I was negative Nelly - no offense to you Nelly's out there. Scan came back great I have Zometa and Faslodex for the next two months then maybe rescan.  So I am off Halavan but for good reasons.

  • reesie
    reesie Member Posts: 413
    edited June 2011
    Options

    Great news patti!

  • Anne45
    Anne45 Member Posts: 52
    edited June 2011
    Options

    Congrats Patti!

  • clemson93
    clemson93 Member Posts: 36
    edited June 2011
    Options

    Patti, how much hair have you lost on Halavan? Now I'm worried because all we have been monitoring is tumor markers for me and my hair has been growing too. I have scans next month so the scanxiety is setting in.



    Susan

  • clemson93
    clemson93 Member Posts: 36
    edited June 2011
    Options

    Oh...forgot to say "Congrats", Patti!



    Susan

  • PJB
    PJB Member Posts: 150
    edited June 2011
    Options

    Patti, that is WONDERFUL. CLemson, hope yours go well, too. 

    Paula 

  • K-Lo
    K-Lo Member Posts: 826
    edited June 2011
    Options

    Marybe, you know we can't base our results on the other girl! That stuff is different in your body.

    Nurseann, join the Doxil club! Hey, it's red, that's more ferocious. Oh Lordy, what a bunch of friends I'm addicted to here! Best to everyone. ~~~~~. Kathy

  • BMAGIN
    BMAGIN Member Posts: 8
    edited June 2011
    Options

    I started my second round of treatment today. Unfortunately, my hair start coming out drastically over the past 48 hours. It's kind of depressing because this time I know there is a chance it may never come back since this and most other treatments moving forward have this as a side effect. Oh well better to be alive, bald and beautiful than hairy and not here. :)



    On a good note my week free of treatment has been one of the best I have had in a while. The crazy joint pain has gone away with the Xeloda/Avastin combo. I was very sleepy for the first few days after treatment, I had some random traveling muscle pains that lasted a few days at a time, and some constipation and heartburn. Advil/Hydrocodone combo for pain as needed, Mira ax/Serakote combo with Prilosec twice a day took care of a lot of the digestive problems. A good look alike wig has disguised the alapecia. Just GOD PLEASE LET THE MEDICENE TAKE CARE OF THE CANCER! Staying optimistic and for some reason I feel that deep in my soul it is working. Blood work ws good today. WBC was on low side a little but everything else including liver function was good. Just a little update to all. Good luck my fellow fighters!

  • pattih
    pattih Member Posts: 31
    edited June 2011
    Options

    Let's say I lost 80% of my hair. I was on Halaven from Jan4th to May 6th. It started growing back immediately. I now have a covering over my hair plus the 20% I didn't lose which is 6 inches long. I wear a hat and I will have the long stuff cutoff in a week or so. I don't mind the #4 shaved look though.

  • clemson93
    clemson93 Member Posts: 36
    edited June 2011
    Options

    I had already lost about 40 to 50% of my hair with Abraxane. What I didn't lose is now 2 1/2 inches long so I have a decent head of hair. The hair I did lose has just begun to grow back. I am so ready to go without my wig but my hair is thin and you can see scalp in places. BMAGIN, I'm glad to hear you are feeling well. I also have a lot of random traveling muscle pain with this drug. Thanks for the well-wishes, Paula. I hope you are still doing well with your cocktail :)

    Susan

  • BMAGIN
    BMAGIN Member Posts: 8
    edited June 2011
    Options

    Well I bought a new wig, one of those lace front ones almost identical to my hair. It is pretty good. Hair is 80-90% gone, a lot more than I was prepared for. It was a long angled bob so I was looking kind of scary that thin so I cut it off to a couple of inches tonight and it looks a little better. I am fighting the urge the shave it off. I look better in the wig with some hair underneath, more natural. But I think I would look better to go ahead and shave it if I go bald. We had a gorgeous day today, 78 degrees and I was a little sad because I thought how much I love feeling the breeze run through my hair and not so sure when that will happen so freely again. I know this may be a Little vain but I am 35 and I was just starting to feel more confident after 3 years of hair growth and 50 lbs of weight loss post first Chemo and steroids. I feel like having the hair was an easy mask for not letting everyone know that I am stage 4. I like to get to know people first. It is not that I am ashamed, I just like to get to know people and for them to get to know me. It seems like it becomes my identity if it comes up first. I know I can wear a wig and hide it but it isn't the same. I am having a hard time with it this week, hopefully as all things we encounter with this disease it will ease with time as well.

  • FightnF8
    FightnF8 Member Posts: 24
    edited June 2011
    Options

    Will be starting this treatment on Thursday. Hate the disappointment of having Abraxane stop doing the job but grateful there are other drugs to try.

  • Unknown
    edited June 2011
    Options

    Hello FF8,  I am glad you found this thread since I know you had some questions re halaven and this is the place where the women are who are doing or have done it.   I am  happy to say I think the claritin did the trick....it it now about 32 hr since I had the neulasta shot and I don't feel bad like I did with it the first time.  Now this could be a combination of things, they gave me a reduced dose this time, maybe the lst time is always the most difficult, or maybe taking the claritin before and then several hours later warded off the SEs........whatever, I am happy because I would not want to look forward to that achy feeling  all over again every two weeks.

    Next week is my week off, so I guess it will be right after that when he orders the CA27/29 again.  Usually I am the one asking for it to be done, but this time I really am wishing we weren't doing it simply because I am afraid I will find out it isn't working.  SEs are so minimal, I would not mind staying on this one.....and if it isn't working and I lost my hair for no reason I am going to be sooooooooooooo pissed!

  • FightnF8
    FightnF8 Member Posts: 24
    edited June 2011
    Options

    Thanks Marybe. Sure hope this works for all of us on here. It does sound like the side effects are doable. I am a fortunate person who does not have any issues with neulasta or neupogen but I did with arensp so I can relate. That sucks!! Hope everyone keeps posting how they are doing. The info is nvaluable!

  • yaiyaicoty
    yaiyaicoty Member Posts: 4
    edited June 2011
    Options

    The last few weeks I have been having severe muscle spasms in or near my rib cages.  since I have cancer spots on the ribs, pelvis, shoulder,  and spine when it happens I have an immediate reaction to grab the spot of the spasm./ Of course this causes a spasm in another spot.  It takes a few minutes to get everything calmed down.  If I am in public I have to leave because it really is an odd sight. . Has anyone else experienced this? 

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited June 2011
    Options

    I've had this for about 6 weeks although it is fading now that I'm off this drug.  I described it to the Onc as "a stitch in my side".  The kind of thing that you can get jogging.  Mine gets better if I "hold" it for a minute.  The Onc gave me another reason for it but it might be the med after all.

  • Unknown
    edited June 2011
    Options

    I get those also, but did not know if it had anything to do with this drug or if I am just that out of shape ( I am)....I will make a move to do something and it will pull my back so I try to move around and get rid of that problem and then it will pull elsewhere.....but none of these things last for very long.  Except for my right shoulder and that has been in bad shape for over a week now, but has inproved due to icing it and just trying not to overtax it....I really think I did it stretching too far trying to reach something one day last week, but since they mentioned my humerus in the scan report of course I worry Uh, oh, wonder if it's the cancer.  This was my week off so all I had done was blood work and that came back fine....white count was at 19 which is of course from the neulasta elevating it.  Yaiy, when you spoke of trying not to react to these spasms when you were in public, I had this visual of Steve Martin in the Jerk when he was trying to show that he had rhythm. 

    The hair loss has really slowed down so that it is barely coming out now and I had it all trimmed shorter yesterday and it looks almost OK  IF you don't look too closely....under a bright light my pink scalp sort of shines through, but it beats wearing a wig or a bandanna and as long as my boss doesn't object and I don't feel totally self-conscious I am working without head apparel.  Had I not had lots of hair am sure it would be almost gone by now.  So other than hair loss and constipation, I am feel "normal".  

    I have not noticed any more neuropathy than I already had and am taking the vitamins and supplements that were recommended to prevent it faithfully. 

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited June 2011
    Options

    I had to even watch reaching a long way for something because that could set one off. Also, I don't get Neulasta so it couldn't be that.

  • clemson93
    clemson93 Member Posts: 36
    edited June 2011
    Options

    I have had a lot of muscle spasms with this drug. It must be a side effect. I found out today that my tumor markers went up for the first since starting Halavan. They went from 213 to 230. I know it's not a big jump but I hope it's not the beginning of the end for Halavan. I got so used to them going down by large amounts. Does anyone else have any experience with stalling markers. I get scans on the 28th so I will know exactly what's going on.



    Susan

  • Unknown
    edited June 2011
    Options

    I am praying for you Susan.....I am actually praying for all of us and sort of feel like we are all part of a big experiment.  Since this is a relatively new drug I guess in a way we are.  SEs I can take, IF it works. 

  • BMAGIN
    BMAGIN Member Posts: 8
    edited June 2011
    Options

    I just finished the second treatment of the second round yesterday. Really tired last night but I was defieted by insomnia. This left me with a very long tired days. I am also having random muscle pains although they are usually short term. Hair is thinner than Donald Trumps comb over. Really struggling with the debate to shave or not. I think the wig looks better with the remaining hair but it being shave may look better a la natural. Any suggestions? Shave or not to shave.

  • Unknown
    edited June 2011
    Options

    DON"T shave it....if it looks like it is all going to come out, have it cut close, but my hairdresser told me not to shave it last time I lost it and I did not...if it's all going to come out, it will come out on its own and it's not as big of a mess if it is short, but I would not shave it completely.  As I posted earlier right now my hair loss is at a standstill, but I am thinking I will probably lose more.  Maybe tomorrow I will get a shot of my pink scalp and post it. 

  • yaiyaicoty
    yaiyaicoty Member Posts: 4
    edited June 2011
    Options

    Friends, its the end of the road for me and Halaven.  Cancer is growing again while on it.  Doctor is starting me on Gamzar and Carbo June 15,  I am supposed to go in for a chemo education class Monday which I have never had before. Has anyone taken these drugs and what can I expect.  Sorry to be a downer

  • FightnF8
    FightnF8 Member Posts: 24
    edited June 2011
    Options

    Just had my first treatment yesterday.  Today feeling the nausea (which I always do with any chemo).  The routine yesterday was steroids, the nausea shot (can't think of the name of it) and the chemo.  Pretty quick and I was off to lunch with friends.  More bummed I went in sick and had to cancel a trip to California.  The realities of this disease kick in every once in awhile and they suck!! I don't have a lot of hair right now so I will just leave it alone and see what happens.  I have kept my hair during another chemo and it was supposed to fall out so who knows?!

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited June 2011
    Options

    From January 2011 - April 2011 I was on carbo and paclitaxol.  Most of my minimal SE's were from the paclitaxol although the carbo didn't do my platelets any good - they were bad to start with but apparently carbo can be hard on platelets.

    Good Luck to you with this regimen. 

  • Unknown
    edited June 2011
    Options

    Last night I was trying to post and ask about edema which I have and have had for several days....lst my ankles, then my feet actually have swollen.  I take HCTZ daily and have ever since I had really bad edema with the abraxane.  But last night it kept saying they were doing something to the site so I could not post and in the meantime something else happened.  I had the worst muscle spasms, cramps or whatever you would call them that I have ever had last night....my whole body wanted to draw up.  I had a difficult time getting up out of bed and was thinking potassium, but could find no pills anywhere (had them from when they had me do lasix one time), did not have an bananas and ended up drinking some tonic water since I think someone told me there is quinine in it.   I was still a mess when I went back to bed and I was actually holding onto something to walk, but I was soooo tired I had to get back to bed.  It took awhile this morning and I sort of ache, but at least I am not having those spasms.   This was my week off and no neulasta this week (plus claritin took care of that) so do you think this has anything to do with halaven at all?