Halaven - Day 1
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Jaylea, I’ve seen you on the Ibrance and bone mets threads and was surprised by your esophageal met and how quickly it all happened. I still follow the Ibrance thread even though I haven’t been on it since September. There is a lot of info on that thread! It only lasted 7 cycles and then I went to abraxane until January and it quit. On to doxil and a bad reaction so then to Halaven and finally something that works! Nothing else has shrunk my tumor as much as this. I’m also on faslodex and my MO wants to pair it with an AI after the Halaven, hopefully after a few more cycles.
I hope you get a good response from it and able to move to a hormonal. I understand about burning through treatments- this is my 4th in less than 18 months. Hoping the next one lasts longer!
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skitzblitz, wandering, pajim and Jaylea,
Thank you for your input! I’m grateful for the support we have on these boards for one another!! I hope this treatment works for a long time with minimal side effects and a great qol for all of us! I ordered the cold caps and I’m so not looking forward to going back there .. I did it with Abraxane and it was a piece of hell but I’m trying to keep things « normal » for my little kids as long as possible so I’ll do it. Abraxane was 3 weeks on and one off and by the third week I felt I’m done and don’t want to ever go back to big chair ever again.. hopefully with the more frequent breaks on Halaven I can tolerate it more. Though it seems like fatigue is real with this one.
Pajim, why do you take zantac with Halaven ?? Do you all get premeds as well? I’m also really worried about neutropenia.. I had that on Ibrance in the first month and that landed me in ICU for a week and I had just left the hospital after delivering my baby. So alot of PTSD when it comes to neutropenia!
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NouzayO, I get Colony-Stimulating-Factor shots (csf) for three days following Halaven. I get nivestym, previously was on leukine, and they are similar to neulasta. It really helps me keep my counts up and keeps me going. I don’t like being at the onco clinic 4 days a week but it works.
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Wanderingneedle, you can get the syringes outpatient to give to yourself. I'm getting G-CSF this cycle for precautionary purposes and I'm giving myself the shots. I had to gear myself up for the first one but the rest have been easy. Walking over to the cancer center (well, driving on Saturday) for four days would annoy the heck out of me. I can't imagine driving in there four days in the row. [traffic and parking are horrible]
NouzayO, I just discover that I get more heartburn with Halaven. Usually on Days 3&4 and Day 10-12. So I keep Zantac in my purse. I guess I could just take it every 12 hours for a couple of days but I tend to wait until I need it. I keep advil in my purse too. I've discovered that when I just 'dont feel well' a couple of advil perks me right up. Guess there's a lot of inflammation in the body and tamping it down makes me feel better.
By the 5th day I usually feel better.
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ughh I have a white tongue, probably thrush, and a few sores! My mouth is sooooo dry i feel like I'm sucking on cotton balls. Hard to eat stuff bc I'm not producing any saliva.I am tired but heading into my off week so I should get a little umpf soon.
Does anyone get joint pain,muscle weakness, or back pain? I think I have all three of those. Two are on the more rare side effects list but lucky me! I lifted a 6 pound box they other day and I swore it weighed 50 pound. I thought what the heck I used to lift this like nothing. Bending over makes me a hey as well and worn out.
11:30 am and I'm ready for nap, just when I see the sun finally come out!
Glad for no neuropathy though!
Hope all are well, happy Memorial Day!
Sarah
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Question, does eribulin get through the brain barrier? If it does, does it do any good against BC mets to the brain and brain lining?
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Hi Mike, technically no. But that doesn't mean it can't occasionally help. Very few drugs cross the BBB -- but the oncs still try them in patients with brain mets because sometimes they work. No idea why.
Skitz, I have trouble producing saliva too. Lasts about four days. And this weekend I've had the cotton ball feeling -- it's awful. I found that sucking on ice or cough drops actually helped. Boo to the mouth sores!! I think I escaped them this cycle. But the GCSF is making me feel like dirt.
I am going to ASCO this week. I'm actually working -- manning the booth for my employer. One of the things I want to do is find the Eisai people (probably at their booth) and ask a few questions about eribulin. There's so little published material about this drug. One thing I can do is confirm the statement I just made about the BBB. Is there anything else you all would like me to ask?
There is one abstract [about eribulin] for the meeting. it's the trial of Halaven plus or minus Pembrolizumab. In the early going Pembro doesn't help. The other interesting thing is that the median time to progression was 4 months. Which when you consider they were scanning every three cycles means 'at the second scan'. This twins with what my onc told me. 30% of people respond, 30% more have stable disease, and the rest simply don't respond to the drug. I've been at this almost five months now, with scans in two weeks.
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I have some mints I bought in the dental care section - they have xylitol and help with the dry mouth. I have mints in my car, my purse, my knitting bag and my sewing room and take a water bottle with me in the car and drink water all day. 💦 I think the water would be harder if I was working but the mints are easy.
Soak up all that info at ASCO and enjoy yourself
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So I went down to Eisai to ask about Halaven. They wouldn't talk to me because I'm not a health care provider. They feel that according to the FDA rules giving me any data, particularly data that are "off-label" is marketing to patients and that's not allowed.
I was frustrated but I sort of understand their position. However they can't be marketing to someone who is already TAKING the drug. Sigh.
My MO is here at the meeting. I haven't decided whether to ask him to get whatever they wouldn't give me. It's probably not worth it.
One thing I found interesting -- in front of them was a patient on one of their drugs. But they weren't interested in asking ME about my experience with their drug. That I think is a mistake on their part.
Grump. Two days left of the conference. Tomorrow I'm going to the MBC poster session before I have to go to work.
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How frustrating! I hope the rest of your time there has been educational. That looks like a really big conference. Is this your week without a treatment? What a way to spend your good days
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It's a huge conference. I haven't had a chance to go to the Breast Cancer sessions because I'm working and I have to go to the sessions for the papers we are publishing. Not to mention time spent at the booth. I'm hoping to get to the genomics of breast cancer session this afternoon but we'll see.
I did walk the MBC poster session. Only had an hour (it opened before the booths do) but I took some pictures. There was a lot on the drug that just got approved. Apelisib?(sp??) Apparently 1/3 of women have the mutation and the drug will work for them. Foundation One had a poster about the most common mutations. I took a picture of the table and will post it for everyone. There were also several posters from South America and Asia on oral taxanes.
One thing is for sure -- I'm doing way more walking than usual. getting out of bed is an interesting experience. I plant my feet on the floor and hope I don't go down when I stand up. So far, so good.
Yes, it's my week off. And I'm getting an extra week off because Thursday and Friday of this week I'm running events. This coming weekend is also my college reunion. I'm really interested to see how I feel with an extra week off. Maybe my hair will grow.
I described my experience with Eisai to our oncology editor. He pointed out that the people in the booth won't know anything anyway and probably don't even work for the company! Just hired for the day and given a script. I was definitely off their script. But that makes a lot more sense. She couldn't tell me anything on label because she didn't KNOW anything! All she probably knew was how to scan a badge and promise someone will send something. I'll be interested to see if anything shows up in the mail.
Hope you all have a great week!
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Pooh on them for not helping you but hope you get sent some good info. I’ve seen a few pics and it’s a really huge conference! I don’t know how you don’t get lost!
Do your feet hurt? My neuropathy has increased over the last two cycles. 😕
It will be interesting to hear how you do with two weeks off - side effects, mood, sleep, etc. And fun activities!
The Piqray is on my list to ask my MO about. I’ll be staying on the faslodex after Halaven but he mentioned an AI also but not which one so maybe this will be somewhere in the mix. My SE’s after chemo/shots are extending into more days so would like to get that addressed. Now that school is out I really need my energy! 😂
Have a great time at your reunion!
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I too find it harder to bounce back with each cycle. It seems to take longer than it used to. Maybe it's the six weeks of rain and summer will help.
Actually, I'm really hoping that the extra week off will 'reset' some things. I'm starting to trip. I've fallen once here in Chicago and almost a second time. At this point if I'm walking I can't do anything else. I have to pay attention.
What form of neuropathy do you have? My toes are OK but I'm sort of numb on the padded part of the foot right below them if you know what I mean. Fingertips feel a bit off but they aren't numb. Nothing tingles, thank heavens. I don't know how anyone survives that.
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Please be careful! You can really get hurt from a fall!
My feet are starting to tingle and feel like they’re falling asleep. I’m constantly wiggling my toes to try to wake them up even though I know it won’t work. My legs and now my arms feel numb on the outside like when you get really cold. They don’t hurt but I don’t like the numbness. It all came on during my previous cycle and this last one I’ve felt awful. I see my MO on Wednesday and I hope to hear some changes in my treatment plan, either starting something else or maybe asking for a break. I wouldn’t mind just skipping the next cycle! I hope your break gives you some relief and you’re able to enjoy yourself.
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so I have officially joined this group.. today is my fifth day after my first dose. Days 2,3,4 were tough or at least very different..I’m just tired and I’m already feeling the neuropathy creeping in .. I’ve had residual neuropathy from previous meds but I have a feeling this is going to get real .. maybe I should go back to Lgluthamin .. that helped a lot while on Abraxane.
What’s bothering me the most is the weird soreness in my jaw and upper neck.. I’m really worried about it .. it feels like a bruise or sore muscles after a tough workout.. not sure if it’s Halaven or jaw necrosis from xgeva .. anyone else got that?? My shoulders started hurting today as well do I don’t know what to make of it.
Also I feel like my breasts are getting stiffer or lumpier .. I can’t believe this is all from one little shot!!
I really wanted to get my liver biopsyed before starting Halaven but scheduling was tough and my MO didn’t think it’s a good idea anyways so most probably that’s not going to happen .. now it’s more risky with getting into possible neutropenia. Oh w
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NouzayO, welcome!
What you’re feeling may be your body adjusting to this new medication. If possible keep track of what your feeling on what days and after a cycle or two you’ll see a pattern. Some of your muscle aches could be from stress. I know I get steroids with the anti nausea meds they give me before Halaven and I can’t sleep for a day or two and it makes me feel awful. Add that to zometa and faslodex side effects! Blah
I take nivestym shots for 3 days after chemo to build white blood cells but not everyone gets them. They come with their own set of side effects. I use cold socks/hand ice and l-glutamine but still developing neuropathy after the 4th cycle. I also had residual neuropathy after abraxane but it wasn’t bad.
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My wife isn't much for computers; well except for Amazon and eBay.
I'm leaving out a whole lot of detail to get to the situation now. Halaven is the only chemo she's done wonderfully on. It quickly wiped out all of her extensive bone mets in no time. She even had two NED PET scans. Then the bombshell, the cancer has gone to the lining of her brain, the dura. She's getting WBR to give her some relief from seizures due to pressure on the brain from the inflamed dura.
It's maddening that Halaven works so well for her but it does not cross Blood Brain Barrier. Does anyone know if the company that makes this stuff is developing a variation that does cross the BBB?
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Mike, I visited the Eisai booth at ASCO. The people I tried to talk with knew next to zero about Halaven much less anything else. But I looked at their pipeline board. There was a compound in Phase 2 trials for breast cancer. But she wouldn't or couldn't tell me anything about it.
Did you try going to their website and reading about what's in the pipeline?
I'm so sorry about the brain mets. A friend has them. But the WBR beat them back and they went away for quite a while. Crpssing my fingers for you and your wife.
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Thanks pajim. Here's what I wrote:
"It's maddening that Halaven works so well for her but it does not cross Blood Brain Barrier. Does anyone know if the company that makes this stuff is developing a variation that does cross the BBB?"
I found out is does to some extent and, if the person has Whole Brain Radiation (WBR) it DOES cross the Blood Brain Barrier (BBB). My wife is just finishing up her WBR next week AND she's to resume her eribulin push infusions two weeks later. Sooooo the Halaven should do the trick.
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nouzay0- not glad your here on the chemo train but we don’t have many of us.
I have all the less common side effects listed for halaven. Backache, muscle and joint pain, bone pain. I take nothing for it but some days I just cringe at the crappy non stop feeling! My doctor did say some could be coming off Lipton. I have read horror stories about that. I do agree, it could be. Some could also be the neulesta shot, but they didn’t really bother me before.
Neuropathy for me seems like it comes and goes? Some days my toes feel numb and others I’m ok. I know, I’m not right! After my first dose of halaven it was bad and I thought uh-oh finally getting the dreaded neuropathy. I only got one dose first round and it never got to bad.
I get constipated! White blood cells counts low but reds seem to hold up well.
I’m off an extra week bc of scheduling. My doctor was gone last week and I should have started round four this tues. next tues I’ll have a scan and if ok I’ll have chemo. I’m up in the air to knowing if this is working. So many other side effects, it’s hard to tell.
Tired a lot, blah!
I really only had a total of 5 doses and two extra weeks off so I don’t know accurate a scan would be. I’m just waiting for one good scan, all I ask. I’m sick of going and being crushed! I’m leaving for Florida next Friday. I’ll either go as it being a happy, celebrate trip or a I’m about out of options here, make memories with my daughter while I can trip. I just went to Colorado in March and had that kind of trip. I had a scan right before we left. It wasn’t great, ac didn’t do much for me. It wasn’t horrible though. I didn’t tell anyone that I went with, or my son when I got there, I was moving to a new chemo when I got back. Kept it to myself and cried every night when they slept.
Poop, I’m crying now!
I can get through halaven bc I’m not willing to give up any working chemo. Abraxane was by far the hardest one on me.
I’m for sure checking into piqray or I found a trial for er+ her2- cancer of Keytruda and carboplatin and northwestern in Chicago.
I’m about talking into trying Dog dewormer as well. Just want to read up on it more. What can it hurt really? I already bark at people, lol!
Hope we are all halaven miracles! I saw one lady that took it almost two year.
Love to u all,
Sarah
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Saw my MO yesterday. Cutting 25% off the dose for Halaven due to side effects. He wouldn’t even discuss another treatment. ☹️ I felt very unlistened to.
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wandering- halaven is working for you right? Did you want to get off it?
My situation may be a bit different than yours but I’m nearing my end of options. I don’t want to throw one away unless it’s not working. I’ll find out tues after my scan. I feel mixed about it working or not. So many side effects i can’t tell if I feel good or not. I’m will to feel like dog do do if it is working bc I don’t have much more out there.
I feel like a tiger some days waiting to pounce bc I’m so miserable with aches. I’m also stubborn as hell and won’t take anything for them. I hate to do any damage to my already damaged liver.
I hope the reduction helps. They did do a trial for giving it every other week and it was just as effective.
Sar
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skitz, the Halaven is working. It’s the only thing that’s shrunk my tumor to almost nothing. It’s my 4th line since I started in January last year. The neuropathy has increased quite a bit in just the last two cycles. Also the fatigue and weakness and headaches. I have a disabled son that I take care of and watch his children after school. Now that school is out I have them every day. My MO told me I could have the reduction or I could quit. Have chemo or have a life?
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wandering- our choices are so wonderful aren't they? That's about what ac chemo was for me. Suffer heart damage maybe or basically death as an option. Either way I could die so one or the other.
First set of scans coming Tuesday.I ache so bad So I figure this one will be the worst side effect so it will work. Well I hope so anyway! If it works then I'm asking for every other week or reduction bc I just about can't take it!
I can see why it would be hard on you with all the other things going on in your life. I work for myself so can take breaks when need be.
Sarah
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Sarah,
If my doctor had not talked about the next treatment like it was just around the corner I wouldn’t be so bothered. Besides the chemo I go back for shots for 3 days after. I called the nurse today and told her I can’t come for shots this week because too much is going on with grandkids and summer. Waiting to see what they come up with for a solution. I asked if I could do them at home and they said not usually because it depends on the insurance and the shots are mixed each day. Whatever. 🙄
The people around us don’t stop what they’re doing because we have this awful disease and I’m not ready to stop either if I don’t have to! I’m glad it’s working but maintaining 4 days a week to the doctor at over 30 minutes each way and all the waiting because they’re usually behind for an indefinite length of time is not doable for me. I’m tired. I was going there for blood draws every week so they could access my port but I get it done at a local lab now. Even if I didn’t take care of my son and grandkids I would still be tired from the driving and waiting. There was no quality of life discussion with the doctor - not an issue for him.
Sarah, if this treatment is working for you I hope it works for a long time! My nurse told me they had a woman on it for 3 years!
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wandering- yeah for three years but omg really three years, I'm so tired after only 5 doses!
Can you get neulesta? I know or is pricey but to me the insurance would only pay one dr office busing i read of 6 in two weeks. The shot lasts in the body 14 days. It boosts me up after the first dose pretty well so I make the second dose. Week off is a staffer thought and I'm low starting the next round too. My whites have been the only issue so far. I didn't mind a transfusion for my red blood counts bc I knew in a couple days I'd be peppy again.
Does anyone know how long halaven stays and works on the body? Just the two weeks when we get the dose?
Sara
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Hello everyone, I hope you don't mind if I join this conversation. I've been on this journey for too long! My onc just started me on Halaven. I was on Xeloda for about 6 mths with no significant results. In May he changed me to Abaxane. After 1st cycle I lost all my hair and ended up in the hospital with fluid on my heart and lungs. Onc was concerned it was a reaction to the Abraxane and didn't want to put me back on it. So here I am on Halaven. I had my first treatment last Monday. Tomorrow will be my second dose. So far it hasn't been too bad and trying to get a grip on the new side effects. I will be interested to see what my counts look like. My sense of taste is totally messed up, bad taste in mouth, and overall blah feeling.
I have been reading all of your posts and was interested to read that some of you are experiencing hair growth while on Halaven. I have razor stubble on my but just told my husband the other day that it feels like it's growing!
NouzayO: You mentioned that you are having weird soreness in your jaw and upper neck. I am having the same thing! I woke up this morning and it was really bad. I took a couple of ibuprofen and it helped.
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Lainey, I was on abraxane before Halaven and I never lost all my hair but a large majority. It’s been growing - slowly - and I’ve had some shedding (the dog still sheds more than I do) but I’m wearing it short and leaving my wigs in the closet. I did okay for the first 3 cycles and started feeling more fatigue after that for a longer period. I’ll be starting my 6th cycle this Wednesday and I just started feeling better from the last cycle on Friday. Not much of a break. I hope you have good results and stay on it for a long time.
Sarah, I’m going to see what the nurse offers me when she calls tomorrow. They have to get approval for everything from insurance and with the doctor being on vacation I’m not sure what they’ll do. If you don’t get a reduction maybe a longer break between doses will be an option. After your scan on Tuesday how long do you have to wait for the results?
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Lainey, welcome! I lost my hair on the first cycle of Halaven (long long story). it's growing back. Very very slowly. About 4 months to get one month's usual growth.
Wandering, last cycle I took the shots. Asked for them in fact. Everyone around me was sick and I have the schedule from hell. The insurance wouldn't approve Neulasta to give myself. They would approve Neulasta if the clinic gave it (odd because it costs them more). But for outpatient use they would approve the generic filgrastim. Pharmacy gave me six syringes -- they go in the refrigerator -- and I gave them to myself. So do ask. And suggest the generic version. I bet your insurance will approve that. Anything is better than driving 30 minutes each way 4 days in a row. I'd just be walking 8 minutes each way and it still drove me crazy.
Sarah, you got scans on Tuesday? I have mine tomorrow. See the doc on Wednesday though he'll probably e-mail the results before that. I wish I was starting at 8:00am but it's 9:30. I'm a gonna be hungry before I get the CT scan done. I expect mine to look pretty good (better than December) and I hope yours do too!!
It was my college reunion this weekend. I went bareheaded inside and baseball cap outside. No one said a word. I had warned my closest friends that's how it would be.
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hi Lainey - I lost my hair to abraxane which didn't work for me. I then moved onto ac chemo and had no hair. For some reason it has grown for me in this treatment. It is slow growing though.
I have my scan coming up tues 6/11. I'm so lucky bc I go and do labs and drink my cat scan stuff and go right downstairs for the scan. My doctor goes down himself to read the scans and tells me right away. I do know someone else goes over them but he wants to read them himself. That waiting for days or weeks, I'd be bonkers.
I think I have some neuropathy and didn't realize. I had two weeks off of halaven bc if scheduling of the cat scan. Now it feels like the numbness is kind of wearing off and I didn't realize I had it.
If all is good and I continue on with this we have to have a serious talk of what I can take for the aches. I feel like I'm 90. I can only sleep so long and I have to get up I ahe so bad. I had this problem on abraxane. I think it was worse on abraxane bc I was awake all night. I'd lay on the floor and sleep if it helped. Is anyone else this bad?
What about the neulesta injection on the arm? Maybe you could do that? My insurance is bad too. This time it was back and forth about getting neulesta. They didn't approve then did then no then yes. It's about all insurance ran now as far as what we can get. The control our lives and determine if we die pretty much anymore. I asked about Verzenio and doctor said well I doubt we could even get insurance to approve it. I thought what i see a lot of people this late in the game get it. They haven't even prescribed yet to anyone at my office bc they haven't had anyone needing it.
My tongue is shot! I don't think it will ever be the same. Numb,hurts when I eat. It horrible! I've tried magic mouth wash which just numbs it. Salt and baking soda mix. Three weeks and it's as bad as it was. I can only eat so long and I'm loosing weight and can't taste and I don't need these problems on top of it all.
On a good note. We went out on the lake on our kayaks with friends and just doinked around. I don't really drink anymore it peaceful.
Ok Pajim, we will both have nothing but good news this week! I'll be with you on Monday.
We can do this! A little harder than the other chemo but no on said it would get easier!
Thinking of you all, always.
Sarah
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