Weigh in: What are the best and worst gifts for people with breast cancer?
Share with us: What are your proudest moments of 2024 and personal goals for 2025?
Take our poll: How are you feeling as we near the New Year?

Halaven - Day 1

1…4243454748…98

Comments

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2015

    Well, unfortunately, I'm done with Halaven.  After a great initial response, the beast has outsmarted it.  Will be trying Gemzar next.  My understanding is now that I've been on IV chemo for almost 2 yrs the chance of me having a positive response declines rapidly.  I've blown through 3 chemos since September; very depressing.     

    Readingmama, how was Gemzar for you?  What about nausea/vomiting?  I always get premeds for this but they say it's not necessary with Gemzar. 

  • GemStateGirl
    GemStateGirl Member Posts: 55
    edited May 2015

    SyrMom--so sorry to hear this news. That's basically what happened to me on Xeloda. Great response at 3 months and then in the fourth month it all started to go south. I won't be scanned again until probably late June so I'll be on Halaven until then. My neuropathy is slowing getting worse so I wonder how long I'll be able to stay on Halaven anyway. It's always hard to make a change in treatment. I hope you have a successful and easy time with Gemzar. Have you tried all the hormonals? I'm hoping to try Ibrance for my next treatment.

  • CalicoCat
    CalicoCat Member Posts: 299
    edited May 2015

    Hi, SyrMom, I'm so very sorry to hear this news.  I've only been on Halaven for a few months and will have a CT within the next month.  Don't know whether it's helping or not, but I don't think I'm far behind you.  You've been such a wonderful support about the other Red Devil, Doxil.  We had identical reactions to it.  The onc took a look at my hands after the second month on Doxil, and said, "That's not quality of life" and moved me on to Halaven.

    Hugs and prayers for peace flying your way.

    xooxoxoxoxox

    Calico

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2015

    Thanks, ladies.

  • ReadingMama
    ReadingMama Member Posts: 338
    edited May 2015

    Syrmom - I did not have nausea or vomiting on Gemzar.  I was surprised because this was a big problem for me back in 2010 on AC and Taxol. I did get Zofran as part of my pre-meds for Gemzar.  My biggest side effect is the fatigue.  I hope you have minimal side effects.

  • SyrMom
    SyrMom Member Posts: 575
    edited May 2015

    Readingmama - thank you. 

  • thisisme
    thisisme Member Posts: 45
    edited May 2015

    Any more room on the Halaven bus? I start it in 2 weeks. About 3 months ago, my scan showed some small liver mets had returned while on A/A and the scan at beginning of the month showed that they had grown a bit more so MO suggesting Halaven. I have a fun community gala coming up, so I asked to delay starting until early June. i am getting used to the idea of IV chemos, though it has felt like the "beginning of the end". The biggest bummer for me is that it ties me to the cancer agency and impacts my ability to travel. I had a friend with renal failure and he was able to travel by booking dialysis time at the city he was visiting. we should be able to do that, too.

    Thanks to al the great information on this board, I am feeling ok about starting the next phase in the journey......

  • benjnate
    benjnate Member Posts: 105
    edited May 2015

    Hi thisisme, and interesting post. I feel the same way as you about being tied down. I hope Halavan works a long time for you with easy side effects.

    SyrMom, I'm sorry. I know you're really disappointed and I get that. I'm right behind you in everything with this journey, (diagnosis date, tx, etc). I wish we could all go back to the days of the hormonal therapy and never have to leave, so simple then. You don't mention Ibrance, and I don't think you tried that yet, am I correct? Just wondering why. My Onc said we will probably do that next to give my body a break and a chance to regroup. Deep breaths girl, you can do this.

  • pearlady
    pearlady Member Posts: 390
    edited May 2015

    Thisisme I was on Halaven for a little over a year and it was a great drug for me.  Kept everything stable and I felt great except for the nueropathy.  The only words of wisdom I would give you is to stay on top of the neuropathy.  I was on full dose for six months.  In the beginning the neuropathy wasn't an issue so I didn't mention it to my onc.  I was so happy it was working.  Then after six months it got really difficult very quickly.  My onc reduced the dose and gave it every other week.  He told me I should have told him as soon as I noticed the neuropathy getting worse and he would have reduced the dose then.  And the good news is that it still worked at the reduced dose. 

  • ReadingMama
    ReadingMama Member Posts: 338
    edited May 2015

    I had second week of first cycle today.  Last week was ok.  Chemo Tues, very awake Wed., sort of crappy feeling on Thurs. and Friday.  Hot flashes increased, didn't see that mentioned as side effect.  Will see how this week goes. 

  • eshinall
    eshinall Member Posts: 41
    edited May 2015

    Hi All,

    I am starting Halaven next week after 3 months on Ibrance. Ibrance only kept me stable for basically 1 month. I also have some ongoing mild neuropathy in my feet left over from Abraxane and Xeloda. What do you all recommend for staying on top of the neuropathy? I'm nervous about neutropenia, also. If any of you have had neutropenia while on Halaven, did you feel bad/get an infection/just randomly find out due to labs? I have not had any neutropenia yet on any of my treatments and am nervous about it.

    Thank you,

    Liz

  • Coopdizzle
    Coopdizzle Member Posts: 29
    edited May 2015

    Just got a call from my doctors office. They are starting me on Halaven on Monday. This is my first chemo since last year when I did Taxol/Carbo and A/C. Feeling nervous, angry and scared. What a great way to start the summer! Any words of wisdom?

  • CalicoCat
    CalicoCat Member Posts: 299
    edited May 2015

    Hi, Eshinall, Coopdizzie, and all, I had Halaven dose #7 on Tuesday.  I felt "flu-ish" on Wednesday, but have been pretty good the last 2 days.  I can tell that the neuropathy in my feet is getting worse (they are feeling more numb, but no pain so far).  My onc specifically asked me about foot pain with the numbness, so I expect he might lower my dose or something if that pops up.  I think the only thing you can do with neuropathy is speak up to the onc and be sure the onc "gets" what's happening with it.

    So far, I haven't had any trouble with neutropenia.  I did run a slight fever (100.5) a few weeks ago, and the onc put me on antibiotics.  The fever left quickly.  I think it was just "what's going around" this little town.  Everybody's been sick.

    I still don't know how to be prepared to have the rug pulled out from under us all too frequently with its gut-wrenching disappointment and frustration, not to mention terror and panic.  I've been doing it for 9 years come November.  There ain't nothin' we can do except to keep going, and take as many mental breaks from "Cancerland" as possible.

    xoxoxoxoxoxo and hang in,

    Calico

     

  • CalicoCat
    CalicoCat Member Posts: 299
    edited June 2015

    Well, as I was saying about having the rug pulled out from under us . . . . .

    Per onc today, tumor marker jumped from 800 to 1,800 in a month. I'm getting a CT chest and abdominal scan on Thursday and will see the onc next Tuesday. No Halaven for me today.

    xoxoxoxoxoo

    Calico


  • Coopdizzle
    Coopdizzle Member Posts: 29
    edited June 2015

    CalicoCat I am so sorry! I hate that chemo does so much damage. Hope they figure something out soon.

    I did my first one today. I had tingly hands and feet for a good 4 hours then it passed. Then my hips hurt. I did just freak out because I couldn't find my anti nausea meds. I found them thank goodness. My doc told me that I have to do chemo 2 days before our family trip to Disney then the day after we get back. BLAH. He also said the bump on my head, that his nurses insisted was nothing, might be cancer too. He says if it doesn't go down with chemo we have to do scans and very firmly told me to call him not talk to his nurses with stuff like that. He sent my lymph nodes from my chest to a testing place and found out only 3 chemo might work. That's scary because one I've already done. Taxol and A/C does nothing. I told him on A/C that I thought my cancer was growing again. I ramble but hey, pain patch is making me loopy.

  • eshinall
    eshinall Member Posts: 41
    edited June 2015

    So sorry to hear that, Calico and Coopdizzle! I certainly know what you are going through. My tumor marker doubled on Ibrance in one month, and since last week I have been having more and more abdominal pain. I wouldn't be surprised if my tumor marker has doubled again since 5/22, I feel so awful. I have giant nodes on my neck that burn, too.

    I sure hope the Halaven works. For those of you who it worked for/is working, does this act quickly? When I took Abraxane, it seemed to help almost immediately. Also, should I take my nausea medicine prior to my infusion (tomorrow/Friday at 230 pm)?

    Liz

  • GemStateGirl
    GemStateGirl Member Posts: 55
    edited June 2015

    Calico Cat--I'm really sorry Halaven isn't working for you and I hope your next treatment is successful for you.

    Coopdizzle--I'm hoping Halaven works for you and you don't have too many side effects on it. Have a great time on your Disney family trip.

    Eshinall--So far Halaven seems to be working well for me. It will be four months that I've been on it on Tuesday June 9th. The only side effect I have is some neuropathy which right now is controlled well with Neurontin. I'm also taking L-Glutamine powder twice a day for the neuropathy but it's harder to tell how much good that is doing. My doctor also has recommended acupuncture to me for the neuropathy and I will probably try that at some point to see if it helps.

    When I started Halaven back in February I was having a lot of pain--ribs, hips, spine (all places where I had mets). At the same time as starting chemo, I was starting on pain meds. It took me about 6 weeks to finally feel better and be able to taper off the pain meds. Around that time I also had a CT scan which showed regression in my liver and healing in my bones. So while the difference between how I felt in early February and mid-March was dramatic, it was not immediate. In my experience, at least, I think you have to give Halaven a month or more to see if it works.

    I'm very happy with the way I feel now. I'm on the lowest dose of extended release morphine and a small amount of a muscle relaxant that doesn't interfere with my life--I can drive, I'm not drowsy and I can do most of my old activities. I do have a compression fracture at L3 so I have to be careful but I'm not in any pain just a little stiffness sometimes. I ditched the walker and cane I needed in February and March and for the most part can pass as "normal".

    I'm not exactly sure how to answer your question about taking the anti-nausea medicine before your treatment tomorrow. I take one Zofran immediately before my infusion and it's given to me by the nurse. I haven't experienced any nausea on Halaven (and maybe that one Zofran is why) but I don't take any after my infusion at all. I guess if I were you, I'd take my nausea medicine with me to the appointment and ask your doctor or nurse about taking it. From my experience, taking Zofran 2 minutes before I get the infusion seems to work.

    I hope you find a way to keep your pain levels manageable while you're waiting for the Halaven to do its job. I know my oncologist was surprised it took 6 weeks for me to feel better so I got the impression for most people it works sooner than that. Hope that's the case for you!

    Pat

  • freebird53
    freebird53 Member Posts: 141
    edited June 2015

    Well Hello Ladies..been a while...I read daily but my willing to type is useless...I have been on Halaven now for 5 to 6 treatments..each and every one of them have been hard...with fevers up to 103.2 and nausea and vomiting for 3 to 5 days after treatment...this last one on Tuesday OC dropped the dose down to 20...and it stilled ran me a muck...fever/sweats where I woke up soaked to the bones..at 3am shower and stripping the bed...I have out of town guest for the last 2 weeks and I have only been able to enjoy a day with them...other wise I was in bed...UGH...I have lost more weight 15 lbs...I just can't seem to eat ....I literaly force myself to eat but later just "up" it comes for at least the 4-5 days after treatment and I keep up on my Zofran/Lorazapam too...Since April 2014 till now I have lost 85 lbs...I am so tired...fighting to gain weight...

    I need to get stronger going on a trip to Oregon end of this mth...a gift from the Adult Wish Foundation here in Idaho. My OC and others from my clinic, nominated me for this and I got my wish granted..I really want to go to the ocean and my son is coming with me...I just feel like this might be my last time to travel like this for a while...I really need to regain my strength back and about 20 lbs back...Other wise I have been OK...just fighting this Halvalen SE is taking it's toll..

    Again..I know I don't keep up with you all individually ...but listen I read everyday...and today...I got these figures typing cuz I need encouragement or some wisdom and ideas to help me with this journey...I look like a scare crow...just saying...

    I love and miss you all...I am just trying to keep my faith and hope up at this time...Keep writing your experiences with this treatment...I hope I will gain more hope from it all

    Peace and Love Carla


  • DEbeachgirl
    DEbeachgirl Member Posts: 16
    edited June 2015

    HI! I haven't updated recently. Just wanted to say Hi! I'm on my 4th cycle. Doing pretty well. I had really bad nausea that Zofran didn't do anything for the first 3 cycles. They changed to compazine and that seems to help. I haven't had any foot issues. I already had a little neuropathy in my left foot from Gemzar but with the warmer weather it is mostly in my little toe and I'm mostly barefoot which helps.

    I did have significant hair thinning after my first and second cycle. I lost about half my hair. fortunately it was very thick. Unfortunately the worst hair loss was around my face and part. I can disguise it with a wide fabric headband. After the third cycle hair loss slowed down and I'm not losing hardly anything. I did get my long hair cut bc it was all over everything. It's chin length now. Which sucks for me bc I hate short hair on me but I have hair so.... I am also using Nioxin shampoo, conditioner and treatment. It seems to be helping some and I do have some "sprouts" filling in at the front of my head so I do go to treatment sometimes w/o the headband bc I don't want to wear them (I got a dozen for cheap on amazon) all the time in case it restricts some hair regrowth!!!

    My tumor markers have gone down 200 points since starting Eribilin too,

  • eshinall
    eshinall Member Posts: 41
    edited June 2015

    Hi Pat (GemStateGirl),

    Thank you for the information. They gave me Zofran and dexamethasone steroid just prior to my infusion of Halaven. I was not expecting the dexamethasone. The pharmacist told me to take Zofran around the clock for 48 hours, which I did. I had just a tiny bit of nausea off and on up until yesterday and today I am feeling fine. The 3rd day after (yesterday/Monday) was the worst for me with the fatigue and some nausea, but today I feel loads better. I don't think my pain is gone at all, but some areas seem a bit better (mainly my neck, which I am thankful for).

    DEBeachgirl--thank you for sharing about the hair loss. My hair grew back after finishing the Abraxane in January, and my oncologist wasn't sure what to tell me, since the other ladies he has taking it now apparently are already bald. The pharmacist told me the exact same thing that happened to you, so I will be curious to see what happens to my hair. It was previously thicker than it is now, but I wouldn't call it thin at this point. We'll see. :)
    Liz

  • thisisme
    thisisme Member Posts: 45
    edited June 2015

    Hi ladies, I just wanted to check-in. I just had my 2nd dose of the first cycle. The first dose made me very very tired and I slept for 2 days. I also had a small flu going into it, so it might have just been that. I am hoping this dose doesn't do the same. So far I would say that I have low energy or am just being lazy as I havent done much today. No nausea, thought I saw more hair in the tub after a shower but then when we start looking for problems, we usually find them.

  • ADJ
    ADJ Member Posts: 203
    edited June 2015
    I don't get it. Finished 2nd noc in hospital, having done some unexplained symptoms including hallucinations. Decreased wbc's , fever, what not. ,
    My hubby is on edge. Please pray for us, I am told to watch out for dehydration, etc.

    I love you all.
    Anita
  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2015

    had my first dose of halaven. Wow. Fever, sweating, chills covered in sweat and bad headache. Called onc and he's putting me on antibiotics. Hope it does the trick

    BTW Onc infuses zofran 1st then halaven then flush


  • thisisme
    thisisme Member Posts: 45
    edited June 2015

    Maureen, I felt the same way after 1st dose. Like the flu. It got a bit better each day, for about 3-4 days. The second dose was better, just felt tired and unmotivated to get off the couch. The break has been really good, feel great. Going into my 3rd dose on Friday so hoping it is an easy one. Lost lots of hair in the shower last week so I guess the thinning is happening. Immediately called a photographer friend and she took a bunch of portrait shots so that I have those with hair! I am hoping I can hold on to most of it.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2015

    I was told you lose all your hair? Does it just thin

  • GemStateGirl
    GemStateGirl Member Posts: 55
    edited June 2015

    Maureen, the prescription insert for Halaven says that in their study only 45% of people lost some or all of their hair so there are definitely a lot of people who don't lose their hair at all. Mine just thinned but mostly near and around my forehead so I need to wear a wig. I would wait to see what happens before shaving your hair off. The hair loss I've had has been erratic and now, four months in, is very minimal. I'm happy to have some hair (I probably lost about 35% of it) and not be completely bald. Hoping you end up being in the 65% that don't experience hair loss.

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2015

    had some severe SE from halaven. Hospital for two days 4 liters of fluid etc.... Go to see Onc tomorrow. Not sure what's next

    Keep on ladies and I hope this is your magic bullet

    Love

    Maureen

  • GemStateGirl
    GemStateGirl Member Posts: 55
    edited June 2015

    Wow, I'm sorry to hear that Maureen. I hope you're doing much better today and that your appointment with your doctor goes well. Thinking of you.

    Pat

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2015

    appointment went ok. They're going to try again Monday with the halaven. I hope it goes well

  • Maureen813
    Maureen813 Member Posts: 1,826
    edited June 2015

    No go again for halaven because count is still too low. So today I get a neupogen shot and we will try again tomorrow. I'm getting discouraged with halaven. Can't do anything if I can't have the infusion

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.