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Halaven - Day 1

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Comments

  • Jeenee
    Jeenee Member Posts: 91
    edited November 2017

    Great news that you are doing well on Halaven! Will be hoping you have continued success!

  • Jeenee
    Jeenee Member Posts: 91
    edited November 2017

    Great news that you are doing well on Halaven! Will be hoping you have continued success!

  • Jeenee
    Jeenee Member Posts: 91
    edited November 2017

    Tenille76 and Southernsurvior,


    Great news that you are both doing well on Halaven! Will be hoping you have continued success!

  • Tennille76
    Tennille76 Member Posts: 79
    edited November 2017

    Anyone had an increase in TM's and LFT's even though scans are good?

  • babs6287
    babs6287 Member Posts: 1,619
    edited November 2017

    Tennille when I was on Halaven my TMs went up but my scans were good. That was the first time that ever happened to me

    Babs


  • Tennille76
    Tennille76 Member Posts: 79
    edited November 2017

    Thanks for the info Babs 😉

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited November 2017

    Tennille, isn't trying to figure out this cancer crazy?? I've never had that happen to me, but glad Babs could provide you her experience.

    I haven't had scans since starting Halaven in July. Haven't pushed it as my TMs keep dropping and they have always been an accurate indicator of my cancer activity. I'm thinking I will ask my MO about it at my next appointment in a week.

    Hope everyone has a great, minimal stress Thanksgiving. I do all the cooking in my household of all boys, so it isn't the easiest.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited November 2017

    Good morning! This thread has been slow so I thought I would check in with y'all.

    Started cycle #7 yeasterday (infusion #13) of Halaven. Biggest change is that the center is running low on saline bags due to the hurricane that hit Puerto Rico, where the majority of the saline bags are made. So, instead of getting saline mixed with my premeds, I got push shots into my port of each premed (Pepcid, dexamethasone, kytril) followed by a a push shot of saline after each one. Same then with Halaven. Not near the saline that I would normally get when it's mixed with the meds in a bag. Hope it works out OK with that method of “infusion." On another note, my TMs only went down 22 points this past cycle. Was hoping for a bigger decline but at least it was a decrease.

    How is everyone else doing on Halaven? Miss hearing from y'all!

  • Tennille76
    Tennille76 Member Posts: 79
    edited November 2017

    I start cycle 5 on Monday and thanks to one of my darling little disease breeders I am already going in a bit unwell. I am hoping it doesnt mess with my bloods too much. I was a little disappointed to see those TM's rise last time. I am tolerating Eribulin so well I want it to work for me as long as possible.

  • babs6287
    babs6287 Member Posts: 1,619
    edited November 2017

    Just had my first infusion of Halaven. I’m back on it cause I had progression while in the study. It’s relatively easy and fast!

    Babs

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2017

    Welcome back, Babs! Sorry to hear about your progression but happy Halaven has worked for you in the past and it was a treatment you could return to.

    Tennille- praying that your TMs decrease this next time!

    Today was Day 3 post-chemo and I was so incredibly tired and overall just didn't feel well. I slept on and off all day, which is highly unusual for me. I have just never taken naps. Hoping tomorrow is a better day.

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2017

    Southernsurvivor. How are you feeling? I’m hoping I don’t have the fatigue you’re experiencing. I need all my energy as I’m on my way down to Florida to see my elderly parents

    Babs


  • Tennille76
    Tennille76 Member Posts: 79
    edited December 2017

    Thanks southernsurvivor. Hope you are feeling better. My infusion is on a Monday and I find Thursday through to Saturday is when I feel a little less energetic than normal plus my mouth gets disgusting. They all rectify pretty quickly though. I dont have any pain but I am a bit headachy and achy post treatment but paracetamol usually fixes it.

  • kaayborg
    kaayborg Member Posts: 576
    edited December 2017

    It seems Halavan has already failed. Just had scans start of Nov and they showed good response...reduction of 2 or 3 cm off largest tumors. But post Thanksgiving symptoms show up. We rescan and I have increase of the same size and new lesions. I am going to try to continue Tues so long as the liver is not at risk. We have not yet had time to gauge whether the pembro eribulin combo can do something different than eribulin alone. Uck.

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2017

    Kaaborg. So sorry to hear of your progression. I feel like I’m also blowing thru treatments way too quickly. Getting anxious! What r they thinking of fir your next treatment

    Babs

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2017

    Hi all - I'm feeling better today after 2 not so great days. Funny that this infusion (#13) reminds of my first few when I really felt the side effects.

    Tennille - glad you are hanging in there. We can all do this together!

    Babs - safe travels to Florida. Nice that you are visiting your parents. I'm sure they appreciate getting to see you. I'm definitely feel like I'm going rough treatments like crazy. It's scary when you know there are limited meds for us.

    Kaayborg - ugh, I hate hearing this! I know you haven't been on Halaven long, so hoping the combo can do some damage to those tumors. Keep us updated - saying a prayer for you and all of us Halaven girls right now for healing.

    Hope each of you can find moments this weekend to enjoy.

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2017

    Kaayborg. . Are you looking into another treatment- y90 Tace etc? I’m meeting with the IR on 12/11. It’s time to try to knock the shit out if my liver mets! They’re defthe most pesky devils for me!

    Bab

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2017

    Hi all - Halaven infusion #14 today. Got the premeds in syringes again instead of mixed in saline bags due to the saline bag shortage. Looks like this will be a way of life for quite some time. I'm tired tonight after my DS's Robotics parent meeting, then officer meeting. I made the "mistake" of volunteering, after I was asked, to be the Secretary for the booster club last May. That was before I had progression in June. Pretty new and active club, so there are a few of us that do quite of bit of work. Nice to be involved but sometimes I just want to lay on the couch.

    Crazy day getting labs too. First I had to wait 35 min to get a finger prick for a CBC prior to chemo. You are not supposed to wait any longer than 20 min. They told me it was lunch time so there was only one tech working....great. Then, they had a flood in the lab before lunch, so all the blood drawn had to be driven to their closest location and be analyzed there. Had to wait over an hour to find that I could have chemo - normally it's about 1/2 hour wait. I am learning patience on this cancer journey! Oh well, could be worse and my nurse was very nice. 😀

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2017

    Hi - who's still here? I'm thinking Babs, Jeenee, and Tennille. Anyone else?

    I have a question for those of us on Halaven. What is your experience with hair loss on this chemo? For me, my hair started majorly falling out after the first 2 infusions, so I shaved it down to just stumble. Then very slowly my hair has grown back, but not all follicles, especially on the top of my head. I bet only 1/2 or less of the follicles are growing on the top, so you can completely see my scalp. I would say about 2/3 to 3/4 of the follicles everywhere else on my head. I had thin hair to begin with, so it's really just annoying right now as I may as well be bald. If I'm lucky enough to ever go off harsh chemo, I would like to think my full head of hair would grow back.

    I'm on my off week so I was planning on doing a lot of shopping. Instead, I've been sick since last Friday. Just finished my Z-pack of antibiotics today, but right now feeling about 75% of how I would normally feel at the end of my off week. Bah humbug! Hoping you all are faring better than I am right now.

  • cling
    cling Member Posts: 263
    edited December 2017

    Southern, I had 7 cycles before stop Halaven( where you are now). Glad it is working for you. Started losing my hair from the first cycle. Because one nurse told me under Halaven my hair will thin out but not totall fall out. So I decided to tough out. At the end of 7 th cycle, my hair is only 10% to 15% left, but not bold. Since I stopped Halaven, some of them start coming back. I think had you not shaved your head you won’t be totally bold either. So just wait for your hair to regrow.

  • danzk
    danzk Member Posts: 4
    edited December 2017

    Hello all,

    Do you know any supplements that enhance eribulin effectiveness?


    Thanks.

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2017

    I just finished my second infusion last week. I was off it for 3 weeks due to rads. Def Hair thinning. Using Toppix now but my wig is ready for action again. Cause I’m going to be away for 3 weeks I had Doxil last night. I’m sure that will speed up the hair loss. Good news though TMs went down 10%. First drop in a long time!

    Babs

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2017
    Danzk - sorry, I don't have any information on supplements helping the effectiveness. I don't take any.

    Babs - have a wonderful trip! Look forward to hearing all about it when you get back.

    Cling - thanks so much for your insight. I really hate hair loss!
  • Tennille76
    Tennille76 Member Posts: 79
    edited December 2017

    My hair started falling out after the second infusion. It came out in chunks so I cut it short. Now its also completely grey/white. Im 41 so its a bit depressing. Its still growing though but its fluffy so I have to keep it short.

    I just finished cycle 5 and I have noticed my legs are numb. Not hands and feet. I am worried my bone mets on my sacrum are growing and pinching a nerve.

    Still having growth in my breast tumours too.

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2017
    Tennille, are you having problems walking due to numbness in your legs? I have felt the front side of my calves feel really numb/weird when I touch them but haven't had issues walking yet. My onc said today that many times they have to do a dosage reduction of Halaven due to neuropathy side effects, but he also stated that at the same time he doesn't see a reduction in the effectiveness of this drug, which is great news.

    Today I started cycle #8 (infusion #15) of Halaven. I learned today my TMs dropped 53 points on cycle 7. They have dropped almost 1,000 points since starting Halaven in July. I think of this as a "Merry Christmas to me" gift! 🎄

    Praying and wishing for successful treatment for us all! Hope everyone is able to enjoy this holiday season. It's tough after I had progression this year, I'm always wondering in the back of my mind if this will be my last Christmas.
  • smax5
    smax5 Member Posts: 1
    edited December 2017

    Hi friends!

    I completed my first dose of Halaven last Friday 12.15.17 my second dose of round 1 is Friday 12.22.17. My scalp hurts when my hair is the least bit dirty....does this mean I am headed toward hair loss? I haven't lost my hair since the beginning of my mets journey 10.5 years ago...so I can't remember exactly how it went. I have read in various places that many women have lost their hair after their second dose? How long after your second dose? I can't do the hair falling out in patches thing... I am an all or nothing kind of gal. When I was on Taxotere in 2007, I shaved my head the day my hair started falling out. I was never completely bald, but my gray hair grew while my brown hair fell out, so I would just shave it every week until it started to grow back. Do you think I will be in that same boat with Halaven? Thanks in advance for your advice!

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2017
    Hi smax - welcome to the Halaven thread! Glad you found us.

    My experience is that I started losing my hair on Halaven after about 2 to 2 1/2 weeks after my very first infusion. It just started coming out in strands. I couldn't stand it and I shaved my hair really, really short. It's been 5 months now and I've had 15 infusions, and I never have gone bald. My hair has grown back very, very slowly, but not all the hair follicles are growing. Maybe 1/2 the follicles on the top of my head and about 3/4 of the follicles on the sides and back. I had thin hair to begin with, so I have to wear a wig or cap as you can see my scalp through the little amount of hair that I do have. Boo! If I had nice thick hair to begin with, it would probably be OK now without a wig but unfortunately that's not the case with me.

    Hope you have much success with Halaven. It's been harder for me than Ibrance or Xeloda, but not too bad. I've learned to adjust my life around my bad days.

    Keep us posted on how you are feeling.

    Hugs, Southern
  • LindaE54
    LindaE54 Member Posts: 1,379
    edited December 2017

    Hi ladies, I will be joining you, will have my first Halaven tx next week due to more progression.

  • babs6287
    babs6287 Member Posts: 1,619
    edited December 2017

    Linda- I'm finding it an easy treatment- and its been working.

    I hope you get the same results and SEs!

    Babs

  • Southernsurvivor
    Southernsurvivor Member Posts: 569
    edited December 2017
    Linda - welcome! I wish you the absolute best on Halaven. It’s not too bad as far as IV chemo goes, although I don’t think I’m finding it quite as easy as Babs has. I’ve been on it for 6 months now and it has worked well for me so far.

    Babs - I saw on another thread that you have a new grandson! So very happy for you - a true Christmas gift! Congratulations to you and your whole family! 🎉

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