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Halaven - Day 1

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Comments

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited October 2016

    Renee, all three times I lost my hair were with chemos that caused somewhat gradual hair loss and not the type that the patient gets up in the morning and all their hair is left on their pillow! I'm sure that would have caused way more anxiety. But as you can see, at one point I had very long hair and that was rough to see the clumps coming out. I never shaved my head and didn't have any scalp problems. Right now my hair is only about 2 inches long and so It won't be as drastic. Today, the chemo nurse told me that Halaven causes the gradual hair loss but she said it is pretty much all of it except maybe something on the sides and back of the head. Patchy. I haven't had a chance to read up what other ladies have written here on this thread, but that's what she told me. So I've decided to buy a new wig with a totally different style than my other 2. Have to try to make this exciting in some way!!!

  • hansaim
    hansaim Member Posts: 68
    edited October 2016

    Hello, all. I finished the 4th cycle today. The CA 15-3 has dropped from 200 to 53, so it seems to be working. I find Halaven easier than Abraxane I had last year. I get the infusion on Friday and I feel the worst on Sunday with fatigue. I have neuropathy on my finger tips and feet and some nausea. My white counts always take a beating so I get neupogen after every treatment.

    HAIR-- I did lose my hair, unfortunately. The last two times, I shaved as soon as hair started coming out. This time, as I was hoping that hair would just thin out, I did not shave. I still have some hair left on the sides and back that a hat does the trick. In the first couple of weeks, it was messy as I was shedding everywhere. I vacuumed my head and shoulders and used the lint roller. Hate losing hair! It's the touque season, so it's not as bad as in the summer.

    I have not worked since my dx 3 years ago. I am amazed at the gals who continue to work while coping with stage 4. All the best. Wishing that Halaven does wonders for all of us.

  • Rseman
    Rseman Member Posts: 69
    edited October 2016

    Hello Hansaim!! So I am going to just assume I am going to lose my hair. This will be a first for me. How fast did you start losing your hair? I am trying to prepare for it and I'm not sure how fast it'll happen. I get my first infusion on Tues

  • hansaim
    hansaim Member Posts: 68
    edited October 2016

    Hi, Rseman. Hair started coming out after the second treatment for me. When I combed, there was a bunch off. I found the worst was during the shower as lots of hair came off and I noticed that the hair line actually changed! I had to lint roll my shoulders several times a day. This continued during the 2nd cycle. By the 3rd cycle, I did not have much to lose, so cleaning up became easier.

    The infusion itself is pretty easy. Once you have the IV going, the injection takes about 5 min. Sending you a big hug today.

  • Rseman
    Rseman Member Posts: 69
    edited October 2016

    Hey! I just got finished with 1st infusion today. It's so weird. I feel like nothing happened :). I know it takes a while but I feel like I dropped some LSD and I'm waiting to see what happens (although I've never done LSD!!!) ahaha.

    Anyway, it is so crazy how I am getting conflicting information from medical personnel vs patients on the hair loss issue. Where I am treated the Dr says that no one loses their hair although it thins. However, every person I've spoken to that has taken Halaven has said out right they lost their hair and to assume it will happen. That is the weirdest thing

  • hansaim
    hansaim Member Posts: 68
    edited October 2016

    I guess the question is how much thinning. I had hoped that I would be able to go out without a hat for a while, but by the 2nd cycle, the look was just wrong, people who do not know about my illness would have asked what's up. I am not completely bald, yet. Maybe that's what the doctors mean that we won't be completely bald.

    Hope you sail through the treatment.

  • Rseman
    Rseman Member Posts: 69
    edited October 2016

    Hello-

    So I had my first infusion yesterday. Today seemed fine except I felt like I had mild flu like symptoms but with no fever. Lots of pain in my lower back and really cold. I took ibuprofen and it seemed to help but then this evening it all came back. Maybe I should take the ibuprofen on a schedule. I hope you all are tolerating the Halaven

  • cenglish62
    cenglish62 Member Posts: 14
    edited October 2016

    i had my last dose of this drug yesterday. My Dr reduced the dosage because my white cells have tanked and my insurance company will no longer pay for neupogen because I'm not curable. That was hard to hear. My Dr said the insurance company's recommended protocol is to delay treatment until white cells rebound on their own. We went ahead with treatment and I have strict instructions to go to the ER if I develop chills or a fever of 101.

    I hate insurance companies. Even though I have a PPO plan and pay large premiums, co-pays and additional out of pocket expenses all in an effort to get the best care possible, I'm still being "managed" by an insurance company. I just don't understand why my insurance company thinks the life of a metastatic cancer patient is less valuable than someone else's.

    It's hard to stay positive and focused on fighting disease when you have to battle with insurance too.

    Celeste

  • Hummingbird4
    Hummingbird4 Member Posts: 220
    edited October 2016

    Rseman, I had my second infusion on Tuesday. Like you, I also get lower back pain but on and off. I did better this time than after the first infusion. Felt more fatigue and weakness the first time.

    Celeste, sorry to hear you have to deal with insurance issues on top of everything! I hope that gets resolved soon.

    So on top of chemo, I also have to deal with having belly ascites (fluid), due to my belly mets, drained on Tuesday and I now have a pulmonary embolism to worry about. I took a blood thinner only for a few days but had to stop because of having to get the ascites drained. One thing on top of another!

    Hope you are all doing well on Halaven and that it works for a long time!!

  • Andkeepgoing
    Andkeepgoing Member Posts: 19
    edited February 2017

    Hello everyone! Not sure if this thread is still active - looks like it has been quiet here for the past four months. I am looking for anyone who has had experience with tanking neutrophils on Halaven: just got back from my cancer centre - had to forego my second dose of cycle 1 Halaven/Eribulin, as my Neutrophils tanked to 0.36 from 3.20 the previous week. They had risen from 2.3 the week prior. :-( Thought they would have rescheduled me to next week; however, the chemo nurse said the doctor told her I should omit next week, then start up on the regular cycle; i.e. which is to start on March 7th (I would see her on March 6th for the 'usual' pre-chemo assessment, according to the 'start up on the regular cycle'). Question: has anyone had that experience with their first doseg and was allowed to continue with the drug? She reduced my initial dose to 1.1mg/kg-squared due to mild-moderately elevated liver function tests after failure of previous treatment, and we had hoped that the dosage would be increased in the 2nd cycle. I am wondering if they are going to pull me off Eribulin. Does anyone have any similar experience with this drug?
    Thanks in advance.

  • blainejennifer
    blainejennifer Member Posts: 441
    edited February 2017

    I'm back on Halaven after a five month break on CMF. TMs rising, and the scan said that I have one liver lesion SUV 10.4. Well, that was a nice holiday, but back to being bald and tired.

    AKG: In the 7 cycles I had of Halaven, my counts never dropped. It did take my TMs from about 800 to 20, and when scanned, all my lesions (liver and bone) had resolved. I only quit it because it was kicking my ass.

    It might still do that, but it will be a living fanny :)

  • Andkeepgoing
    Andkeepgoing Member Posts: 19
    edited February 2017

    Good luck on your next round BlaineJennifer. How did Halaven kick your ass the previous time? Hoping I get to stay on it - but will not find out until March 6th. If I do, I am interested in hearing other's experiences.

  • blainejennifer
    blainejennifer Member Posts: 441
    edited February 2017

    The key to Halaven (besides luck, of course) is to keep eating some red meat at least 3-4 times a week. My counts always looked better when I did. Stay hydrated, and eat tons of green veggies.

    And, keep the poops coming, in what ever manner you prefer.

    Exercise for 30 minutes a day. The physical stress causes the bone marrow to do its job. It SUCKS sometimes. I have a small hill near me that I call "My Everest". I may go slow, but I get up that dang thing. I like it best when a group of senior citizens totally outpaces me.

    Hugs from upstate NY.

  • Andkeepgoing
    Andkeepgoing Member Posts: 19
    edited February 2017

    Thanks BlaineJennifer. Had to chuckle about the seniors outpacing you.

    Have a good weekend.

  • Lovestosing
    Lovestosing Member Posts: 49
    edited February 2017

    Hi

    I'm starting Halaven on 22 March - can't say I'm looking forward to it! I had such a great run on Xeloda and wish I had had longer than a year on it. It's only recently been licensed for use in Scotland so I don't know much about it - dreading losing my hair again. Loved having hair for the past year! This is a great link so I catch up with others in the same boat! How is it in relation to other chemos you've been on - how long have you all been on it?

  • highhopes
    highhopes Member Posts: 51
    edited March 2017

    Hi All,

    I just had my second Halaven treatment today. It was suppose to be on Tuesday but my Neutrophils fell below the normal 1.5. Had to go home, give myself a shot of Neupogen. Today my Neutrophils was at 3.5 so I got my treatment. After the first treatment which was a 5 minute push, my doctor told me not to take the Neupogen as he wanted to see how my body would react to the Halaven. Previously, I was on Taxol and had to take the Neupogen shots 2 a week after Taxol, now I will take the shots 2 days prior to the Halaven treatment. So far, I haven't had any serious side effects. My hair was finally beginning to grow after several months on Taxol and now it will be gone. I have some Neuropathy from the Taxol. Am waiting to see if it will get worse being on Halaven.

    Blainejenni, thanks for the information on how to kick ass on Halaven. Red meat is my favorite and green veggies. I will load up on them. Exercise has become a challenge for me due to my Neuropathy and a DVT. I use to play tennis 2 to 3 times a week and walk 3 to 4 times a week and now I'm reduced to taking a cart and walking the aisles of the supermarket without shopping. It's better than nothing.

    Best wishes to all,

  • KDs-Husband
    KDs-Husband Member Posts: 75
    edited March 2017

    Hello ladies,

    Officially joining this board today, if y'all don't mind. My wife, KD, just experienced progression on Taxol, so we are moving on to Halaven beginning next Monday. KD was diagnosed Stage VI out the gate in Feb., 2016 with extensive liver and bone mets. She maxed out on A/C before moving on to Taxol last June.

    She will be receiving infusions 2 Mondays in a row followed by 1 Monday off. It looks like the side effects may be somewhat similar to her Taxol side effects with perhaps a harder hit to her WBC counts. I am interested in learning as much as I can from you ladies, while sharing her experiences at the same time.

    Thanks,

    Louis

  • blainejennifer
    blainejennifer Member Posts: 441
    edited March 2017

    KDsHusband,

    Halaven feels very much like Taxol, to me. A little more nausea, a little less anaemia. It's definitely a "sofa" chemo, in that I spend a lot of time on the sofa.

    The crash seems to come two days after the infusion, even without steroids, and lasts about two days. The last week of the cycle is infusion-free, so that's when I plan to do more. Otherwise, I do one big thing a day (grocery store, cleaning the frig, grooming the dog, etc.). If I overdo one day, I will pay the price the next. No physical pain, but I will fall steadily asleep by 8:00 while watching TV with the Hubs. Garden season is starting, so the husband has pretty much concluded that he'll be watching TV alone. Not completely alone; I'll be next to him, quietly snoring.

    Everyone waffles on about how important it is to eat a nutritious diet. I agree. I just don't seem to have the energy to cook one. Due to dietary restrictions, prepared food isn't as fun as it could be. My husband seems to think that if he feeds himself, then the job is done. We are working on that. Do keep an eye on your wife's diet. Fatigue can lead to some silly eating choices.

    On the whole, this regimen is effective and not horrible. In Cancerland, that's not so bad.

  • KDs-Husband
    KDs-Husband Member Posts: 75
    edited March 2017

    Thank you Jennifer,

    That helps a lot. And your previous posts help also. Trying to get my wife to eat red meat 3-4 times a week will be like asking her to go for a 5K run though, LOL. Would not hurt me to follow that diet plan.

    Please post some pictures of your garden for us once it is all happy.

    I could use a little inspiration in that area also.

    Hope everyone has a great day,

    Louis

  • cling
    cling Member Posts: 263
    edited May 2017

    Anybody still on Halaven? After 6 years on AI, I have to move to chemo. Will start Halaven after my port is put back in. Would like to know the experience and SEs on the chemo. Thanks

  • blainejennifer
    blainejennifer Member Posts: 441
    edited May 2017

    Cling,

    Still on it. TMs slightly rising, but - so far- still sticking with it.

    The only SEs I've experienced are baldness and anemia. No neuropathy. Some nausea after the infusion, but this one is easy compared to Taxol.

    Jennifer

  • cling
    cling Member Posts: 263
    edited May 2017

    Jennifer, thanks for your reply. I read that you returned to Halaven the second time early this year. Hopefully I can handle it as well as I did with Cytoxin and Texsotere 6 1/2 years ago. Do you have a port or just use vein for the Halavenshort push IV infusion.

  • blainejennifer
    blainejennifer Member Posts: 441
    edited May 2017

    Cling,

    I am a huge port fan. They put the Halaven into a small bag of fluid for me, as I do Much Better with a slow drip. My infusion takes 20 minutes. But, with labs, and pre-meds, my chair time is about 1.5 hours.


  • cling
    cling Member Posts: 263
    edited May 2017

    Jennifer: Your info has been very helpful. I am a port fan too. The first thing after Onc told me the planned treatment is IV chemo. My request is to have port back. I am waiting for the procedure to be arranged then start chemo. Onc told me I will be on it until I can't take it. Pretty scary words.

    From my reading, Halaven does not require pre meds. Does the center give you any anti nausea pre med?

  • blainejennifer
    blainejennifer Member Posts: 441
    edited May 2017

    Cling,

    I don't need anti-nausea pre-meds, but I do take the steroids. I tried to do without them, and the whole nausea experience is so very much reduced with them. My Onc also shared that, anecdotally, ER+ women have better outcomes with the steroids.

    My feeling about the treatments is that we will be as bees going from flower to flower. When one treatment runs out, we'll go to another. Fingers crossed they keep making new treatments, but there are plenty of old ones too. Your Onc should have said that you'll be on it till you have some progression, but that he's got plenty of ideas for after Halaven. Some really gifted oncologists have the bedside manner of mules. Golly. Like all the brain room for syntax has been taken up with JAMA articles.

    Good luck with the port procedure. I did feel like a horse had kicked me in the chest for two weeks, but I bruise like a peach.

  • stagefree
    stagefree Member Posts: 360
    edited June 2017

    bump!

  • cling
    cling Member Posts: 263
    edited June 2017

    Finished the first round of infusion. Tolerable!

    Onc is very kin on supplements for each different chemo treatment. For Halaven, my assignment were B-6 300 mg daily dosage split into 2 or 3 times a day ( I could only get 100mg, so use it 3 times a day), and Glutamine 15 mg (one table spoon), twice daily to prevent neuropathy. so, I started my homework the day before chemo. The cancer center started my pre-meds (Dexamethasone & Zophran) for 20 minutes, then started saline for 5 minutes followed with push injection of Halaven in 2 to 5 minutes ( so nurse can watch my reaction). After another flush of saline to clean the IV, then it is Heparin for the port. It is a short IV chemo process.

    My first SE, lost of taste bud, appears about 5 to 6 hours later, and the day after injection, still with steroids in the system, is fine until sleep time. The steroids do affect my sleep. Third and fourth day are the time chemo hits my digestive tracts, usually diarrhea, but not too bad. Walking after lunch and dinner helped to regenerate energy. the first 2 week on one week off is done, and knowing the possible SEs, now I can plan my vacation in September. My hair still hangs on, hope I will still have some hair in September!

  • cling
    cling Member Posts: 263
    edited June 2017

    The worst SEs for me during the first round of Halaven are the revolutions caused by digestive tracts. Each part revolts at different time with different force. For slight nausea I use ginger chew, the difficult battle is diarrhea. I have to find good attack plans to crush such revolutions.

    Today is the first day of the Happy Week (off week), no stomach upset, no intestines rumbling, I can taste food, and no bathroom runs. It is a beautiful day!

  • Nan812
    Nan812 Member Posts: 224
    edited June 2017

    hi....i think i need to join this halaven thread..im due to start on june 9th....im waiting to get funded for a parp inhibitor called lynparza....has any one tried this combo... i havent been on chemo since nov 2015 and now im 3 months from my DD wedding i get to be a big or skinny bald bird...dont get me wrong, i feel blessed to be around for it i just dont want to be bald in all the pics....that was my pitty party...now has anyone been on this combo? i guess the fda approved the lynparza for ovarian cancer (3rd line) but not bc yet and my brain cancer is keeping me from the bc trials so they are trying to find a way to pay for the $12,000.00 a month to hopefully keep me alive for a lil while longer....ill see if i can find a combo thread if they can get me funded....or ill start one and let you all know...keep shining bright... im looking foward to your input.

  • Nan812
    Nan812 Member Posts: 224
    edited June 2017

    hi.....i had my first infusion yesterday.....oh my, im so tired, bone weary.....this could still be SE's of the gamma knife, for some reason that was very difficult this time..even the holes on the back of my head are still painful , swollen, oozing, and red....to top everything off, im still not approved for the parp inhibitor and thats only a matter of time before this cancer hits my ovary if thats all they are waiting for....im troubled :( does anyone have any input or advice?

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