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Halaven - Day 1

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  • denny10
    denny10 Member Posts: 421
    edited April 2022
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    Hi Sadiesservant, it's sad we have had to stop, I had hopes of getting a year out of halaven.

    I am sorry you are having pain ,it really drags you down . I had radiation on a spine met that was compressing a nerve and giving me pain in my shoulder blade. Luckily it resolved, because I was taking opiods for a while ,they were the only thing that suppressed the pain. I hope you you get some relief soon.

  • denny10
    denny10 Member Posts: 421
    edited May 2022
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    I have seen my Oncologist and after looking at my last biopsy he has decided that Trodlevy is the next treatment for me!

    Good wishes to anyone still getting halaven.

  • nopink2019
    nopink2019 Member Posts: 384
    edited June 2022
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    I had 1st Halaven infusion 4 days ago. I found this thread and read everything posted 2022. MO said positive reaction was 60%, but I'm not getting any warm, fuzzies on its success. So many seem to go off after 3 months with progression. Maybe the nickname for this one should be "Hail Mary"? Also hair loss seems prevalent, not 50/50 chance. But I'd take bald (for 3rd time) to have stable tumors.Any succss stories to share?

  • nopink2019
    nopink2019 Member Posts: 384
    edited July 2022
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    So, bald it is. I also find that I have no appetite. Continue losing weight which drains my energy too. Don't know if lack of interest & motivation is caused by lack of energy or mental fatigue.

  • 50sgirl
    50sgirl Member Posts: 2,071
    edited July 2022
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    Nopink, I noticed that you had posted to this thread and remembered how few people were on Halaven when I was. It can be disappointing when no one else contributes. I am in the same boat now that I am on Ixempra, so I decided to share my Halaven experience with you. I was on the treatment for 6 or 7 months. It was working, but I had a rare painful SE and had to come off of it. (I had severe joint pain and had to use a walker and was unable to grasp things such as toothbrush and eating utensils with my hands.) The SE gradually went away within 6 weeks of stopping Halaven. I was disappointed that I had to change treatment. I think that I would have stayed on Halaven for a long time. it was working and other than one severe bout of mouth sores and the the joint pain, it was an easily tolerated treatment for me. I hope it works for you for a long time. Oh, and yes, I went totally bald for the third time while on Havalen. Ixempra makes it four times! Things could be worse. Good luck. I will be pulling for you.

    Lynn

  • nopink2019
    nopink2019 Member Posts: 384
    edited August 2022
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    After 3 months on eribulin, I have a CT this week. Don't know if it is working, but my appetite is nil, fatigue is skyrocketing & now I have tingling/numbness in toes up to knees. See MO week after scan to discuss. Six weeks ago she said I might take a short break, then restart to see if fatigue & appetite improved. I can still walk, but not always steady feeling. Now with this I wonder if I've got to move on to something else. Yep, bald too.

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited August 2022
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    NoPink, Sorry to hear of your rough sounding se’s. I hope your MO takes some action to lighten the effects. I’m just finishing cycle 2, fatigue, neuropathy are evident, but I also take some pain meds that make me unsteady and foggy. And yes, hair loss. Good luck with the CT. Please post again after you see your MO.


  • nopink2019
    nopink2019 Member Posts: 384
    edited September 2022
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    Good results from CT, tumors in liver show shrinkage & lungs look clear. When we discussed neuropathy & fatigue, she talked about "quality of life issues". No chemo this week! She wanted to schedule a liver biopsy, but found my MBC diagnosis (from another MO) included biopsy from lungs that showed HER2 low. This is what she was hoping. I've got a break until early Oct when I'll start Enhertu. Neuropathy is not common SE and we'll hope this abates somewhat given a 6 week break from treatment. I'm glad the eribulin was effective, but if it causes SE, would probably cause them again. I look forward to a few weeks to regain strength.

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited September 2022
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    NoPink, Great news on the Her2 low finding by your MO. I hope the break is good for you and Enhertu keeps your liver improving. It’s nice to hear your good news especially when we know it’s not always good news. Sending warm thoughts!

  • Pots
    Pots Member Posts: 189
    edited September 2022
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    I started Erubilin on Monday. CT scan at the beginning of September showed progression in size and number of liver tumours. Plus my lungs are showing cancer progression too. I had a summer off from treatment so now it’s back at it. Day 2 I had fatigue and a fever, today it’s about fatigue and mild nausea. Tomorrow will be something different? When did you typically lose your hair? Anyone else having fevers?
    I haven’t updated my treatment list, the format got in the way. Sigh!
    Be well,

  • newgardener
    newgardener Member Posts: 102
    edited September 2022
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    Hi Pots,

    I started erubilin this week too (on Tuesday). No fevers, but I did take my temperature a couple of times because I developed a headache and earache the first night.

    I had trouble sleeping because of the steriods - I'm hoping they'll cut my dose next time. So I'm very fatigued. No nausea fortunately. I did take odansetron on day 1.

    I lost my hair on the clinical trial I was just on so my hair is very patchy - about 1/8". But my eyebrows and eyelashes have made a teeny appearance - I sure hope to keep them.

    Good luck!


  • nopink2019
    nopink2019 Member Posts: 384
    edited October 2022
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    I'm back to Eribulin. Worked great, in 3 months liver tumors decreased by half. But caused peripheral neuropathy. After a break of a month, numbness is gone, so MO put me back on this at a 10% reduction in dose. Markers still decreased during break, so I might take another one at some point.

  • nopink2019
    nopink2019 Member Posts: 384
    edited October 2022
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    My hair started growing back after 2nd month of treatment, but is stagnant now. Eyebrows & eyelashes are growing back slowly. Waiting to see what restart will do to hair.

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited October 2022
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    NoPink—. Thanks for letting us know how things are going with you and Eribulin. It's very interesting that your neuropathy went away and your markers are still dropping. And the best news is about your liver lesions shrinking. I hope your news continues to be good and that the rest of us on Eribulin get some positive news too.🌻.

  • nopink2019
    nopink2019 Member Posts: 384
    edited November 2022
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    I've had 4 infusions of eribulin since my break. Fatigue seems worse than before. I think some of it is mental fatigue, can't seem to get interested in any activity. Mornings are good then I'm pretty useless, even with things I could or need to do. Maybe my give-a-shit-er is wearing out. No MO visit @next week's infusion, but will discuss mid-Dec. I have a break scheduled @end of Dec before scans early Jan, so this is probably just how I'll be til then. Guess I'm just griping, thanks for symphathetic ears.

  • frand
    frand Member Posts: 2
    edited December 2022
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    Hello Nopink,

    I am scheduled to start Eribulin next month & I'm interested in hearing how your tolerating this drug, side effects & any "helpful hints" (for the last 5 yrs. I've been on target therapies rather than traditional chemo). My infusion schedule will be 2 weeks on & 1 week off). The idea of losing my hair for a third time is definitely not appealing so I am considering trying a coldcap but I'm still not certain. I would appreciate any guidance or feedback. Thanks!



  • newgardener
    newgardener Member Posts: 102
    edited December 2022
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    Hi Frand, I hope you don't mind if I also check in with my eribulin experience so far. I started with no hair because of my last treatment. So far regrowth > thinning so I'm sporting a crew cut that I hate, but it is hair. My eyelashes and brows came in thick but now seem thinner. But I have them.

    I've been lucky on the GI/nausea front and managed to convince them to reduce steroids to a minimum. I've not needed nausea meds.

    I am really tired. Especially the next day.

    The neuropathy has gotten worse...my finger tips feel like they are covered in glue and my feet are numb:( They cut my dose slightly last week because of this.

    I don't know how a cold cap would work. One "upside" of eribulin is how little time it takes...its a shot into my port that takes about 5 minutes. The longest part is waiting for pharmacy to deliver the meds. I've gotten in and out in as little as 45 minutes.

    Good luck and I hope you have a good response.

  • nopink2019
    nopink2019 Member Posts: 384
    edited December 2022
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    frand, happy to share my experience. I have infusions every other week . I do not have a port, but have had no problem accessing my veins. My treatment should be about an hour total, but sometimes it's delayed as the nurses are busy or they are waiting for the meds to be delivered. I do have a neupogen patch put on the back of my arm after each infusion. It feels like you got snapped by rubber band and 27 hours later it injects medicine, then you just remove it. They did skip it once as my blood work showed it was unnecessary. My hair fell out almost immediately, so I purchased my third wig from wigs.com! A couple of months later my eyebrows and eyelashes fell out. Hair has all grown back in even though I'm still on eribulin. While it is thick, it doesn't seem to be growing in length. It is very curly and I've always had straight hair, except when growing back from chemo . I have no problem with the steroid pre-meds and it keeps me going for a couple days. I take one Ritalin every day, and add a second on day 3, 4,5 after chemo. Those are the days I am most exhausted. After 3 months I was developing neuropathy in my feet that was crawling up to my knees. MO stopped meds for a month and I restarted at a lower dose. I have slight tingling in my feet now occasionally, but it does not seem to be progressing. I begin taking Phillips tablets for constipation the night before chemo and continue once or twice a day until I feel back to normal, typically 3 days. That was a painful lesson to learn. My drive to the cancer center is 2 1/2 hours. I only see MO, every other visit. I am very lucky to have several friends who go with me and we have lunch and do a little shopping maybe on those short infusion only days. Otherwise DH typically goes with me. I think he wants to make sure I adequately disclose side effects, haha!

    Good luck, hope this works for you for a long time. When I go to chemo by myself, my flippy pillow is my best friend. Three angles, holds a phone or tablet on your lap.

  • nopink2019
    nopink2019 Member Posts: 384
    edited December 2022
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    Anyone having tongue blisters from this chemo?

  • newgardener
    newgardener Member Posts: 102
    edited December 2022
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    Hi Nopink

    I have had one tongue blister since start eribulin in September. I actually used to have more of them when I was on abemaciclib - it's so hard at times to manage eating and speaking with them. I hope yours resolves quickly.

  • nopink2019
    nopink2019 Member Posts: 384
    edited December 2022
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    Thanks, newgardener. I had some mouth sore mouthwash which helped alot. Think 've had it before, but not often.

  • frand
    frand Member Posts: 2
    edited December 2022
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    Thank you Newgardener & Nopink for your feedback. I'm glad to hear that at least the GI symptoms are not of major concern (on many, many of the drugs I've been on, it was often problematic). I'm trying so hard to embrace the holiday season but with chemo "looming" in the near future, it has been "emotionally" challenging. I'm still uncertain about this cold capping (trying find out how effective it is with Halaven)-don't want to repeatedly have "brain freeze" & then still lose 50% of my hair. I don't mean to appear like a whiner but this year has been quite difficult (immunotherapy stopped working, a mass grew in my brachial plexus & neck which rested on nerve bundle causing complete loss of my right hand & incredible nerve pain). So.. onc. is hopeful Halaven will shrink the mass & bring me some improvement (however, the loss of strength & function of my hand appears to be permanent). My initial diagnosis happened back in 2010 & I've been "battling" this disease on & off for 12 years. On one hand (no pun intended), I feel amazingly blessed to still be here to enjoy life, watch my kids grow & achievement & spend time with my husband, family & friends, but on the hand, some days this "battle" leaves me physically & emotionally exhausted! Thanks for letting me vent a bit. Wishing you all a Happy Holiday

  • nopink2019
    nopink2019 Member Posts: 384
    edited January 2023
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    Recent CT revealed growing liver mets and new ascites. Also pleural effusion in lungs, which I knew due to fast expanding SOB. So eribulin isn't working anymore for me. Enhertu next. MO did ask if I felt strong enough to try another chemo, not a good sign. Hope eribulun treats the few of you reading this forum well and for a long time.

  • newgardener
    newgardener Member Posts: 102
    edited January 2023
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    Hi Nopink2019...I am sorry to hear about the progression. Good luck on Enhertu - hope it melts your liver mets away.

    My next scan is at the end of the month. So far I'm still feeling better (breathing better and no cough) so I am hoping I might be able to squeeze more out of eribulin before my next move.

  • nopink2019
    nopink2019 Member Posts: 384
    edited January 2023
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    Better breathing sounds positive. Good luck w/scans

  • jo-jo2018
    jo-jo2018 Member Posts: 139
    edited March 2023
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    Anyone here still doing well on Erubulin? I just started this after Vinorelbine failed me .