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Halaven - Day 1

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Comments

  • [Deleted User]
    [Deleted User] Member Posts: 35
    edited July 2011

    Marybe:

    I did Xeloda for two years and feel very positive about it.  When it stopped working, I went to carboplatin/paclitaxol which never worked and she left me on it too long.  She and I went round and round over Halaven.  I thought that she was trying to experiment on me when there were many things I had not tried yet - older drugs that I thought more reliable.  I was her first Halaven patient and the University had only one other at the time. 

    She won the argument by stating that Halaven was very different than anything that I had tried before.  In other words, my cancer has morphed and become resistant - lets throw something completely different at it. 

    One thing that I did at this time was force her to come up with a treatment plan.  What would be next and how long would we give it before bailing out.  She came up with three drugs - I'm on one now.  If you get a second or third opinion, ask them for a treatment plan, too.  

    I'd also get a little explanation with the treatment plan.  For instance, since I bombed out on paclitaxol, she doesn't consider me a good candidate for any of the taxanes - since there are several on the "chemo list" that shortens my "chemo list" a little.  Since I've also burned my way through the hormonals, I'm down to just the "chemo list".

  • china
    china Member Posts: 56
    edited July 2011

    Marybe, I am so sorry to hear about your liver progression. I too believe that when my SE's diminished while on a hormonal Femara that progression was starting. I stopped having hot flashes, leg pain and joint pain was almost nonexistent and my L breast nipple turned more to the left and inward some more and was told it was because I had no estrogen and that I was tolerating my med Femara. Well I know my body, I had progression, my tumor on my breast went from 1 cm to almost 1.7cm and I had liver and new bone progression plus my markers were rising. I have done 2 second opinions and your onc should encourage one and I am glad you are going to MDA, they can confirm your present tmt plan or give you a ideal new tmt plan, thats the beauty of 2nd opinion, it helps your comfort zone and gives you answers from a new source. It is stressful though. Good luck Missy and CYBER HUGS for you. Dawn

  • EllsJen5
    EllsJen5 Member Posts: 2
    edited July 2011

    My wife just completed her second round of Halaven with very little from a side effect standpoint.  Her tCA27-29 tumor markers have went from 17.7 to a 17.1 after two treatments so, I'm assuming were probably going to stay this course.  As long as the markers aren't rising, I guess were on the right track

  • Unknown
    Unknown
    edited July 2011

    Thanks for all the good thoughts and support.  I am NOT GOING TO  MDA. well maybe I will, but I am just emailing this onco who I saw when I did go there two years ago for now.  I had my latest scans and the CDs sent to him and I always ask him about treatments and what he thinks and he is amazing in that he always answers me right away.  I am no longer actually his patient, but he takes the time to answer me and is very prompt in his response.  I am going to get his thoughts on all of this crap and if he thinks I should come to MDA and have scans and tests done there and have them work up a treatment plan for me, I will go. 

    I will keep you posted.  I am a bit disappointed, but believe me, I am not giving up. 

  • PJB
    PJB Member Posts: 150
    edited July 2011

    Marybe, darn that liver! I'm glad you're going to talk to the MDA doc (I have a different doc there, who also has continued to consult with me even tho I'm not a patient really anymore). If nothing else, they can offer other suggestions or confirm what your onc is thinking. Hugs to you, Paula

  • BMAGIN
    BMAGIN Member Posts: 8
    edited July 2011

    Maybe,

    My initial treatment was a combo of Xeloda/Avastin/Zometa. I did respond well to it for a year and it looked like I was heading toward remission until my last progression. Keeping up with the pills can be cumbersome sometimes and they can adjust the dosage to help control the hand/foot syndrome. I am sorry this did not work for you but wish you the best. The great news for you is that you respond to treatments. GOOD LUCK!

  • Unknown
    Unknown
    edited July 2011

    Ok, it's official, halaven did not work for me.  I was almost afraid he was going to say, let's give it more time.....not that the SEs were bad, I just would be worried at how fast things would progress in the liver since they seem to be on an upward roll.   Now he wants to do Ixempra and Xeloda....the xeloda was my idea and he didn't seem to keen on it alone, but then he says they do sometimes combine it with Ixempra so his plan sort of built from there.  So once again I am worried about "what this one's going to do to me?" which is so stupid. I lived through Abraxane/avastin and surely this one can't be any worse....at least sure hope not.  Both say diarrhea so maybe I will be loading up on lomotil and imodium.  The odd thing is for over two weeks now I have not been the least bit constipated,  the neuropathy is about gone and of course the hair stopped falling out awhile ago so I told him I thought the halaven tried to work and that maybe it did a little when the CA 27/29 went down just a little, but then it stopped.  He didn't agree or disagree with me.  I am really the only patient he had on it so far that it hasn't worked for and I am sure he is just as disappointed as I am that it did not work. But this half hair....I hate it....guess the Ixempra will take care of that. I am going to ck with the onco at MDA to see what he thinks about this plan.....I would be starting next Wed.

  • K-Lo
    K-Lo Member Posts: 826
    edited July 2011

    Gosh, Mary, do you do well on roller coasters? Stop start, left right. I know you told us about Halaven SEs but I forget(everything); are you glad that's done?



    Let me search lxempra. ( Seems we are getting a lot of x drugs lately. )



    With admiration, hugs, Kathy

  • reesie
    reesie Member Posts: 413
    edited July 2011

    I'm glad you have a plan now Marybe. I really this one does the trick for you for a long time and the SEs are mild (or better yet non-existent).

  • Unknown
    Unknown
    edited July 2011

    KLo, Compared to a lot of chemos the SEs I had on Halaven were not bad at all....but alas it also did not work for me.  The part of the treatment with the bad SEs for me was the neulasta shot.   Thanks reesie....I am not sure if I am happy with this plan or not since I do not know much about this Ixempra and do worry about the hand foot symdrome with the Xeloda, but many women have told me they could deal with it and also not everyone gets it. 

  • reesie
    reesie Member Posts: 413
    edited July 2011

    bump for dfleaman

  • FightnF8
    FightnF8 Member Posts: 24
    edited August 2011

    Well have had 6 treatments of Halaven now....2 weeks on 1 week off.  I have been beyond tired for the entire time until this past week.  The chemo nurses think I am still recuperating from my Hawaii and New York trip.  The onc agrees.  I'm hoping they are right and the Halaven is still working!  My tumor marker was above 1,000 and is now at 568.   Yeah.  For the FIRST time since November 2009 my bone and bone marrow mets are .... dare I say .... STABLE.  I have met the stable boy for the first time and I'm not turning him loose.  I do have some abandonement issues but I am hoping they will pass.

    On another note (and I believe I'm not the only one in this scenario) I do have some progression in a new area.  There are some tumors in the nodes around my lungs.  We are keeping an eye on them to make sure they don't get much bigger or we will have to change chemo.

    It's interesting to have "diffuse sclerotic metastatic disease throughout the bones" appear stable. It seems like an oxymoron to me.  I want them just to be gone (as in disappear) and if I am understanding correctly they are still there but have now suddenly stopped growth, even though they are still all over the place.  Am I asking too much??  Looks like I also have a paratracheal node growth. Guess that could be why I have this whisky and cigar voice that causes me to keep telling my onc I could moonlight as a phone sex person.  One of my friends calls me Demi Moore. Dang, if only I looked like her too!!

    So I guess we take the good with the bad and just hope to buy more time.  Since my tiredness got better I asked for a break from chemo but it is not the right time for that right now since I have progression.  Dang.  Sometimes I just want a month or two off but my bugger is too aggressive whenever I'm breaking.  I just try to hold onto the good part of this and hope the bad follows the same pattern.

    The fight sometimes gets old when you have nothing but chemo to rely on.  The AI's never worked for me even though I'm estrogen positive.  Have been a fluke my whole life that way.  Been on 7 chemos so far.  Hope Halaven hangs for awhile.  I had a good 6 months on Abraxane before this.  How do our bodies, minds, and spirits keep doing this over and over?  We are some sort of strong women around here!!!  Give yourself a big HOOYA for that! 

  • PJB
    PJB Member Posts: 150
    edited August 2011

    Thanks for giving us the good news before the blechy news! So let's go with stsble boy with a side of potentially bratty nodes.

    I'm sorry you're so tired all the time. That, for me, makes it very hard to stay on positive as much as possible. But it doesn't seem to effect you. You're always so on top of things with great humor. 

    Big hugs, Paula 

  • eag1954
    eag1954 Member Posts: 119
    edited August 2011

    So far  its working for me...but two to three day afterwards the SEs kick in and I'm exhausted.  I'm hoping I'll be able to stay the course with Halaven.

  • ASPtrip
    ASPtrip Member Posts: 3
    edited August 2011

    Hi, I just read thru this whole post, and there is a lot of good info here about Halaven. I have been on Xeloda and Ixempra since May 5, and after the first two cycles my scan showed complete NED. I was thrilled and amazed. Now I find out today after cycle 5 It has showed up again in the liver, spot on spine, IM node, and now 5 mm lung nodule. My cancer grows so fast. We have to stay on top of it.  Im triple negative, therefore I have less options and difficult to get under control. However, my onc wants me to try Halaven now or a parp trial. It seems what I have heard hear is that Halaven is not too difficult with SEs. Hair loss maybe? Neulasta maybe? premeds maybe? Is there anyone here that is Triple negative and how is it working for you? because it seems that only a small percentage had good luck. My main concern is liver and lung. Did anyone have it shrink those tumors? Also thanks to everyone on this forum. It helps so much. Theres times when I learn more here than from my doc.(not that he's not great) And to all who have shared their Halaven story and it did not work out well for you, I certainly hope the very next thing you try is your answer.

  • Unknown
    Unknown
    edited August 2011

    ASPtrip,  Halaven did not work for me, however it has for many women on this thread and also many patients I have met in the treatment room at my oncos.   For me the SEs were not bad....I did lose hair, but not all of it and am about to get the stuff that is left cut very close to my head so it can all grow back equally (my beautician doesn't believe in shaving the head).  Other than that my main SE was constipation and some weird muscle spasms which tonic water helped (has quinine in it).  Now the neulasta, that was another story....that hit me hard, like the flu.....and I think just about everyone on Halaven needs it because it knocks your white blood count down.  Taking claritin the day of the shot before and after helped a lot. 

    I am interested in how you felt on the Ixempra and Xeloda....that is what my onco wanted to do, but after reading about it, asking on here and also consulting with the onco I saw at MDA, I really was reluctant to do it because of SEs.  Then we found out my tumors changed and I am now HER2+ so I am doing  herceptin and Xeloda....but Ixempra may be down the road.  How were your SEs with it?

    Good luck to you.  Hope the halaven works for you and know you will get some good info on this thread. 

  • mbmoss
    mbmoss Member Posts: 5
    edited August 2011

    does your hair stay out the entire time you are on halaven or will it begin to growback in a couple months? scan today to see how it i s working...

  • Unknown
    Unknown
    edited August 2011

      This young woman I know from my onco's office who had excellent results on halaven had hair growing back while she was still on it.  She started it in Jan and when she had scans in April, her liver tumors were just about non-existent.  She quit wearing her bandanna in June and had hair growth of about 1 1/2 in and she looked really cute.  I started it on May 4, and found out it was not working mid July and as I said I have half hair and getting the remaining cut really short....I keep looking for regrowth, but don't see it yet.  Everyone has told me it can start growing back while you are still on it. 

  • ASPtrip
    ASPtrip Member Posts: 3
    edited August 2011

    Marybe: Ixempra is not so tough. I had few problems. slight fatigue for a few days, almost no nausea- but did have slight constipation. The thing that bothered me the most was the disgusting taste that stayed in mouth for like a week 1/2 after infusion. I could not stand to eat or drink anything but water and pancakes for some reason. I sucked on a lot of Ice breakers, and it helped a bit. I lost nearly everybit of my hair, except for wispy on sides and back, but a little thicker on top.

  • eag1954
    eag1954 Member Posts: 119
    edited August 2011

    Mine has started to grow back..

  • FightnF8
    FightnF8 Member Posts: 24
    edited August 2011

    My hair started growing back while I was on Abraxane. Started Halaven after that and hair hasn't fallen out after 6 treatments so I don't think it will.

  • jneumann
    jneumann Member Posts: 24
    edited August 2011

    Wow, there is so much information in all these threads and so many strong great women.  My hat is off to all of you!  We have to keep going and trying although some days it seems like an uphill battle. 

    I was on Halaven, on 2 weeks then off one week.  I finished all but the last dose in the 6th cycle, I just could not do any more I was so weak I had to come in a wheel chair and didn't even have the energy to get up on the table.  That was July 1st when we decided it was time for a break from the Halaven plus from my scans my tumor in my liver shrank from 34 mm to 4 mm so now we just wait and see if it holds, nothing before has ever held my tumors they always regrew.  As far as SE's the worse part is the depression, fatigue, low blood count and dehydration.  I have been in the hospital 5 times for dehydration, in the beginning my kidneys went into failure so we cut the Halaven down by 20% of the dosage and the Halaven worked fine for me, at least for my blood tests.  So let's keep our fingers crossed and prayers coming that my tumor doesn't start growing back, new scans due in a few weeks or longer.  I would love to stay on break forever, I can dream can't I. 

    I hate being tired but I hate the depression more.  Does anyone else have problems with depression?  I have been on Celexa since I was diagnosed in November 2007, so my regular doctor increased my Celexa for the depression and it seems to help, I still have one day a month that I get so depressed I could cry all day even when I was on vacation with lots of people around me.  Getting out shopping or doing lunch with someone helps, working would help but there are too many days I would have to miss because of not feeling good or being too tired.  I can sleep from 9 pm straight thru to 4 pm the next day then go to bed again at 9 pm. 

    I have tried the local support group but it was way too depressing for me, I know you have to be your own advocate and keep fighting, it is just that some days fighting alone stinks.  I have great friends and family plus and mainly my husband but unless you have been thru this you really don't know how it is.  

    But thanks for letting me ramble on and on, I would appreciate any thoughts on the depression and other SEs.  Reading this makes me feel like I am not the only one fighting this.  I was the first in my medical clinic to try Halaven and now they have put another woman on it too.  So I must be a good candidate.

  • eag1954
    eag1954 Member Posts: 119
    edited August 2011

    I've also noticted the depression with this chemo as well..

  • mbmoss
    mbmoss Member Posts: 5
    edited August 2011

    Well, just found out Halaven wasn't working. Lung tumors continued to grow after 2 cycles. Now Onc wants to start Navelbine. Said 3 in 10 chance it will work. My list keeps shrinking, fast.  I'm thinking why waste the time... Seems like my tumors don't respond to anything anymore! I'm so frustrated. Contimplating if I should go somewhere bigger to see if there is something else out there for me. My onc says there isn't much else out there that is proven (key word). Oh well, my faith is in God  healing me, not these docs or drugs. Whatever he has planned for me and my family will be fine. Have you ladies had much luck with Navelbine or any other cancer centers? Thanks for your input.

  • PJB
    PJB Member Posts: 150
    edited August 2011

    Beth, I think if you search the boards, you'll see women who've had success with Navelbine. I, too, didn't succeed with Halaven, but after almost running out of chemos, went with Taxotere. Crossing fingers it's working; TMs at least are down. 

    I did go have another opinion at MD Anderson. Pretty much the same list of drugs, unless you are interested in trying out trials, which work really well for some of those who are on them. And of course you have to thank them for being bold and trying the trials

    But I was glad I went to MDA and have kept in touch with my doctor down there when it comes to choosing new treatments.

    i'm sorry the Halaven didn't work for you. Hope the Navelbine works greaet. i was on it with Gemzar and didn't think the SEs were too bad.

    Paula 

  • janetwit
    janetwit Member Posts: 15
    edited August 2011
    Hello everyone,  I just found out Monday that after 9 rounds of Halaven since December 2010, it no longer is working for me either.  All my labs, tumor markers and AST went way up in just 2 months. My CT also showed the tumors had increased in size.   I'm guessing the cancer out smarted the haleven.   I'm now going into a study that I tried to get in last December, but my platlets were 99 and they had to be 100 to get in.  The individuals in the study where I receive treatment have all shown 100% positive results.  Not sure of all facilities in the study, but the website is http://www.celldextherapeutics.com/ if anyone is interested.  Good luck to everyone!!
  • FightnF8
    FightnF8 Member Posts: 24
    edited August 2011

    Just finished 7th treatment, 4th round. Tumor Marker dropped from 568 to 469. I'm pretty happy about it since a few months ago the marker was up tp 1,068. Thanks to Abraxane and Halaven I'm buying more time. Got my dripping eyes under control, less nausea and not as tired lately so much happier with Halaven. Hope it lasts like Abraxane did!!

  • ASPtrip
    ASPtrip Member Posts: 3
    edited August 2011

    Well I suppose I will be starting Halaven 8\22, since the parp trials are pretty much all closed now to new participants. Oh well. I refuse to let anything get me down these days. I really haven't seen anyone who is trip neg do very well on Halaven, but my doc says its worth a shot. Doesn't sound real promising, but who knows.

    mbmoss: sorry it did not work for you. I see you also are trip neg. I am curious to see how Navelbine does for you. Hope it kicks cancer butt for you. Keep us posted. Have you tried Ixempra? It worked for me for a few months.  I also would like to know what chemos have worked for you in the past.

    Janetwit: Very good info on the celldextherapeutics. Keep us posted as well on your progress with that.

    FightnF8 & jneuman: so glad to hear Halaven helped you both.

  • FightnF8
    FightnF8 Member Posts: 24
    edited August 2011

    Still plugging away on Halaven! Been having fevers the past week and hope it is not a sign of tumor progression. They can't seem to find out what is causing them. How is everyone else doing on this? How many of us are there??

  • Unknown
    Unknown
    edited August 2011

    FF8,   Keep on plugging away and know that I am others are praying the halaven works for you.  Are you doing neulasta?....that was what would give me the fever and make me feel like I had the flu.

    The hair I lost while on halaven is growing back dark so this should be an interesting look.

    I started my 2nd 14 day cycle of Xeloda this week and so far no hand foot syndrome.  Also since my HER2 status changed I am getting herceptin.   Am hoping that we have finally found one that works, but never know until it is time for scans again. 

    I hope you are all doing well.    Marybe

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