Halaven - Day 1
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Teachermom2, sounds like your cold capping is working - yea! I have lost about 60-70% without cold capping. I never go out without a cotton cap or the wig on big occasions. It is a pain not having hair.
Sounds like a good PET scan. Hopefully Halaven will knock out that tiny liver spot too. Will be also curious to see your next TMs as mine went up 25 points 2 cycles ago, then last cycle it went down 5 points. Halaven has dropped my TMs almost 1100 points since inception (late July 2017.) TMs on my last 3 cycles have been relatively in the same ballpark, so I’m not sure if I will see much of a decrease again. At this point, stable is OK too. Would like to get more out of this chemo as this is my 7th different treatment in 4+ years at Stage IV. My options are starting to dwindle. Yesterday was cycle 14 infusion #2, so TMs will be done in about 2 weeks (after my off week is completed.)
Take care all - enjoy your day! 💕0 -
Well folks, it looks like I'll be moving over the a different chemo - CEF - or FEC in French ha - the first kind I ever had, way back when I was first diagnosed. Sigh. No mastectomy possible until the disease has been cooled down a bit in the right breast.
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Amarantha, so sorry you are leaving us. 😟
Best of luck on CEF - that is not one that I’m familiar with. Hopefully you can find some gals on this forum that are on this treatment too. Take care
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Hi Southern Survivor, I might not have the right name for it - in French FEC but in English CEF-- it is an acronym for Cytoxan, Epirubicin (Ellence) and 5-Fluorouracil. Its the red liquid - quite common I think for neoadjuvant chemo the first time round. It pretty much failed me the first time round (neoadjuvant chemo before first mastectomy in 2014 for Inflammatory Breast Cancer in left side) and my team does know this, but decided to try anyway.
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Hi Halaven ladies!
I had a hard time finding this thread for some reason but I guess it’s a small group.. I may be joining soon as I’m currently trying to decide on my next line of treatment after failing a number of tx (Ibrance/ letrezole/abraxane/Xeloda/Doxil) in just 19 months!
I’m between Halaven and a combo of Faslodex and Verzenio obviously insurance would also play a role somehow... Any words of wisdom and advice is welcome!
How are you all doing?? SE and tolerance??
I’m also interested in cold capping which I did on Abraxane with decent results but now my hair is definitely a lot more wimpy than when I first started abraxane.. I only skimmed through some of comments very quickly but I noticed that Teachermom2 did capping as well, which brand are you using?? What’s your capping schedule??
I have small kids (youngest is 19 months) and I really need to keep things “normal” even though I hated my hair before, now I feel just having some hairgives my kids a break from knowing that I’m dying on them sooner than they ever thought.
Btw, for those who complain about scarce eyebrows, I found that wunder2 wonderbrow gel works really well.. I get it on amazon abd sometimes it goes on sale so I stock up. Still need to figure out something for eyelashes.. I hate fake eyelashes though.
Looking forward to hearing from you
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Welcome Nouzay. Glad you found us.
i have only had one full round of Halaven so far. My side effects have been extreme fatigue, stomach pains, hair loss (about 15% left), mouth sores, loss of appetite. This usually hits day 4 and 5. Having said rhat, I just had my third injection Thursday along with Keytruda and other than sleeping all day Friday Im doing pretty gpod.....so far, we will see tomorrow and Tuesday
Others jere jave jad no problems with Halaven so who knows.How was Doxil for you? Have a friend starting that Monday and she is looking to see what the SE are for that.
Thanks for the eyebrow recommendation. Mine flew the coop after Taxol.
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Hi Milwmama!
Thank you for leading me to this group
I'm sorry you are having a hard time with SE .. those drugs never conform to any norms when it comes to SE or even efficacy.. ugh 😑 Doxil is really easy and I was really hoping I can get it to work fir a year or so but oh well.. nothing ever goes according to plan with this freakish disease! It's a once a month injection with low incidence of allergic reactions, no hair loss mostly, no weird GI stuff either, mainly the only thing is hand foot syndrome which most people are ok with but of course I'm the exception! This can be mostly managed with urea creams before its onset and of course during, I love udderly smooth cream, epsom salt foot bath, full body baths are great too but I didn't have time for that with 3 kiddos, if things get really out of control then decadron and a reduced dosage should improve things. Some people did icing of hand and feet during infusion but I didn't because I felt it didn't make much sense since SE actually show up in the third or fourth week!
The major concern for Doxil is cardio toxicity but they monitor that with an echo every three months. There's a maximum number of infusions you can take due to that.There's also a doxil thread, that is active despite only being a small group. Some people on there actually stayed on Doxil for more than a year!!
If you get the brow gel watch some YouTube videos on how to achieve a natural look .. you may have to adjust according to how much hair you have there already .. I found I needed to use more than they recommended as I lost more hair ...it's amazing how there's a YouTube video for anything these days 😜
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Hi NouzayO - welcome!
I’ve been on all the drugs you mentioned, with the exception of Doxil, and then add Faslodex, and the combo Gemzar/carboplatin. So, I have tried a bunch and Halaven has been doable for me. I’ve been on it since late July 2017 and pleased with my huge decrease in TMs so far. The last few cycles my TMs have been more stable, so not sure if my cancer has figured out this drug now. Yes, lost probably 70% of my hair with no cold capping. It’s a quick infusion and side effects are manageable for me. Don’t feel my best on Days 3 & 4 after chemo (Day 1 being chemo day) with fatigue, metallic taste in mouth, and just overall don’t feel well. I try to rest more on those days. Seems fatigue gets me more as I continue on this drug, but I’ll take fatigue over other side effects. (Cycle 1 did hit me harder than all other cycles, so don’t despair after only one cycle. It definitely got better from there.)
Also, thanks for the eyebrow suggestion. My eyebrows are about gone completely along with my eyelashes. Ugh.
Take care and let us know if you start Halaven!
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Hello everyone...
It's been a long time since I've been on this board. When I first signed up I was IIIB TN IBC. I'm now MBC with lung mets and lymph node involvement and still TN. I started on Abraxane in January, but due to progression of the lymph nodes, I'll be switching to Halaven, along with getting rads to my mid sternum now. I just wanted to poke around and check out the forum again.
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Hi All,
Well...after a tumor marker rise at the end of round three ( from 87-96), I had a PETwhich my Onc was happy with, for the most part and urged me to keep going. He said it could have been a hiccup, and we should give it another round, although my markers have always been my accurate red flags, and keep a close eye. End of round four numbers came back Monday, and I am at 86. Sothey are headed back down. Ugh the mental scars and games the shitty disease leaves!!
Today I had the first infusion of round#5 and still cold capping. Boy would I love to give them up, I stopped shedding after round two, but I am afraid. I wonder if we only lose our hair with the initial shock, and then it stops...could I be over the hump? It is filling in a little too, I have sprouts everywhere coming through the longer hair. I am almost ready to roll the dice😬 Especially since I really don't suffer other side effects...other than fatigue. Anyone have any thoughts??
I hope you are all feeling well and tolerating this shitty ride... cancer sucks.
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Welcome, Krimson, to the group! For me Halaven is doable, and I don’t have terrible side effects, but fatigue and a few bad days each cycle. Just read the last few pages on this thread for some info.
Teachermon - yea for lower TMs! I just started Cycle 15 yesterday. Honestly, fatigue had set in quite a bit but part of that is my crazy life these past 2 weeks. My oldest son just graduated from college this past weekend and getting ready for that and going out of town to attend (let alone coordinating hotel, dinners, etc. for everyone including sister’s family, my family, and DH’s and my elderly parents) was exhausting. Also, my youngest has been quite sick lately, so going to doctor appointments and coordinating end of school with teachers due to lots of absences is a whole other issue. Then, of course, my own BC issues and chemo. All of it is enough to drive me crazy!
My TMs did drop 8 points. Mine are much higher than yours but glad they are keeping stable. Last 4 cycles have been stable, so I’m hoping the cancer hasn’t started figuring out a way around this Halaven!
Not sure about your cold capping. I can tell you that after the initial shedding, mine stopped (I’m not cold capping.) Now my 30% left is growing, which is annoying for me, as I have to keep shaving it down, as the little I have left does me no good. The rest that fell out initially is not growing back, which I don’t intend it to until I get off this Halaven and maybe start one that doesn’t cause hair loss (if that really exists??
Take care all and keep us updated on how you are doing. You are right, Teachermom - this disease and the mind games it plays is really crappy. Hang in there - we can support one another!
💕💕💕
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Hi all. I have been lurking here, ever since my doctor said she wants me to try Halaven. I start this Friday (in three days). I was diagnosed in April 2015, stage four right off the bat. I did chemo - taxotere infusions along with a second drug I cannot remember, then surgery, then radiation. Scans we're good (NED), So I started on Exemastane for awhile with some success, and when that failed, ibrance and letrozole, which also worked for a bit. When that failed, I started Xeloda. The Xeloda kept the tumor on my liver from growing, but no shrinkage. I am thankful that I only have the one tumor (mets from the initial breast cancer), but it is a stubborn one that worries me. They tell me that the plan is to shrink it small enough to where they can go in laproscopically and zap it. Fingers crossed that Halaven will do the trick. I still have my hats and a wig from when the initial chemo killed my hair, so I guess I am ready - just in case I am in the 50% of folks who lose it. Is that right, or are there more than that? Any advice for a newbie? I have stocked up on prunes and apples for the constipation - fun little side effect. They said they will inject a anti nausea drug in with my Halaven, which also causes constipation, so double fun. Sorry if this is too much information, but I am stressed a bit. Apprehensive about this new drug and what my side effects are going to be this time. A little depressed too. I am sure you all can relate. Sorry. Any advice would be welcome. Thank you
--Liz
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Hi Liz:
I just finished my first two rounds of Halaven. It’s the easiest chemo I’ve had so far. For me, nausea has been minimal, and the constipation has been relatively mild. ( It’s better if I stay active and keep hydrated. Stool softeners like Colace help as well. ) I’m cold capping, because I didn’t want to lose my hair for the fourth time. So, I can’t personally speak to the hair loss question. ButI have read that not all people have total hair loss, and that some people’s hair starts to regrow during Halaven treatment. Fatigue can be an issue, and I always feel more energetic if I force myself to get up and move around, rather than taking a nap.
I hope that this will be an easy and effective chemo for you!
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Hi Kriet33 - welcome! As I have said in previous posts, Halaven is doable. I only have side effects for a few days after chemo and don’t have any constipation. I intermittently do have the big D throughout the cycle. Regarding hair loss, if you don’t cold cap (can’t speak to cold capping), almost everyone I have spoken with has had MAJOR hair thinning (I may have 30% left) or sometimes complete hair loss. I may as well be bald as the 30% left that does continue grow isn’t helpful - I have to wear a cap or a wig to look decent. I also haven’t had any nausea. I do get anti -nausea premeds (dexamethasone, kytril and Pepcid) right before chemo but don’t have to take any anti-nausea drugs at home. So nice not to have nausea! Fatigue is a factor, as on all chemos for me, but I do function quite well. Rest when I need to.
It’s scary starting a new chemo but I do think this one has been one of the best ones for me re: side effects. I’ve been on Halaven since last July - 15 cycles I believe. Also watch for neuropathy. I haven’t gotten it yet but one person I know had to stop Halaven because of it. I have seen several, including myself, do quite well on Halaven.
Good luck and keep us posted!
Waving hi to everyone. Bunsuela, glad you are doing so well on Halaven! 💕
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Bunsuela. Thank you for your response. They don't seem to offer cold capping here. Maybe that is something that we have to look into individually? I am glad to hear that you are having minimal side effects. I am still working, so I hope the fatigue doesn't knock me out too badly. I always have trouble exercising when I am fatigued, but I need to force myself. I have heard from multiple sources that it does help. Thank you again for your perspective. 😊
Southernsurvivor - I am somewhat relieved now to hear from a few folks that Halaven seems to have milder side effects. And dang, I was hoping I would not lose my hair again. No one talks about cold capping at my clinic. I guess I will have to ask. But, in the scheme of things, if Halaven works, losing my hair is not a big deal. Less work for me to get ready in the morning, yes? Thank you for your advice. ❤️
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You are welcome, Kriet33! Our center seem to “help" you with cold capping but you order it yourself. I heard it's $500/month - insurance doesn't pay. Some people are glad they did it and others, not so much and it doesn't always work so well. Like anything, success seems to be based on individual. I just figured the $ wasn't worth it given my thin hair. If I lost anything, I would have to wear a cap or wig anyway. Plus it's just not sustainable to me when almost every drug/chemo I will take in the future will probably cause hair loss. It's my third time of losing hair - ugh.
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My infusion center doesn’t offer the built-in cold capping systems, but several of us bring our own caps and dry ice and manage the process on our own or with a helper. YouTube videos, along with several discussion threads on this site, give a lot of helpful information on the cold capping process. I couldn’t see $500+ per month for renting the caps, so the DIY info I was able to find online has been invaluable.
I purchased Elastogel caps on Amazon—the long ones that cover your neck, not the helmet caps used by the rental cold cap services. After chilling them in the freezer, I put them in a cooler with 50 pounds of dry ice and freeze them for at least five hours. About an hour before the infusion, I wet my hair, put on a disposable shower cap, and don the first cold cap. I change them about every twenty minutes, and wear a cap for at least an hour after the infusion ends. So far, I’ve kept 80-90% of my hair, and no one has noticed the thinning except me. Since I own the caps, my only cost going forward is $40 per infusion for the dry ice.
My very best wishes to you as you join us in Halaven Land.
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Not to be the downer but, I had mouth sores, extreme fatigue, nausea, loss of appetite with my first Halaven. This 2nd round I did not get mouth sores. My fatigue is just never ending. My loss of appetite is still going strong. I do have hair loss, near 80%. Does seem to be coming back now, but slowly.
I must add that i did start Keytruda as well after 2 injections of Halaven. That brought a torso rash that was near unbearable.
I have been on my break and go back tomorrow for my 3rd round starting with Halaven/Keytruda. Gee, just cant wait to see whats next. Hopefully nothing as my body is getting use to the chemical assault.
Summer is coming and I sure would like to feel "good".
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Milwmama, good to hear from you but sorry to hear about all your side effects, and praying most of them get easier/better as you go along. That Keytruda rash sounds very painful. Hope they can give you some cream or med to get a handle on that. You are absolutely right calling these treatments a “chemical assault.” One day in the future I think people will all look back and think we were crazy to put this poison in humans. But, we do the best we can right now just to live. Best of luck to you on around #3!
It is so interesting how we all get different side effects. Makes it hard for us to have any idea what a chemo may bring to us. I will say my first cycle of Halaven was the very worst and now I’m on cycle 15, so hang in there. Also, I just got my first 2 mouth sores yesterday - what the heck?? I have had nausea 2 times in 10 months, so I’m pleased about that. You have loss of appetite and I seem to be starving. I do have a metallic taste in my mouth that makes me want to eat or suck on candy ALL THE TIME. It’s terrible as it’s the first time I’ve really gained weight on a chemo in 4 1/2 years. Not fun when you can’t fit into your clothes. I’m sure loss of appetite isn’t fun either. Ugh.
Fatigue and hair loss do seem to be consistent among many of us on Halaven. Fatigue definitely accumulates and gets harder the longer we are on chemo. I’ll be curious to hear if your hair does grow back while on Halaven. Mine is growing, but only the 30% of follicles that remained on my head, so that’s not helpful. So, I keep shaving those hairs down to about 1/4 inch or a bit longer. Frustrating for sure. More trouble than its worth!
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Saying Hi to all of you on the Halaven thread as my oncologist just recommended it for me as the next step. I’ve read some of the posts but plan to continue. Know that I am very greatful to you for sharing your journey - it gives me support and hope on this sometimes lonely road that I have been on since first DX in 1999.
To share with you, DX with MBC (liver and bones) 2/2018 after going through all of the AIs. I’ve had IDC 1999 and ILC 2015 both new primaries ... yup that’s right. I didn’t even buy a ticket. Was on Ibrance and Faslodex since 3/18 and PET scan this week showed “mixed treatment response” with some liver lesions responding well and some growing. Yup and I checked to make sure it was my scan cause of course the panic sets in. So having a biopsy of the growing liver site and staring Halaven next week.
Sounds like the infusion is quick but wondering if I need a PICC line - my veins aren’t the best. Hate to lose the hair but that sounds like it will happen too at least to some degree... it really thinned out on the I/F too- so guess what the heck. We sure put up with a lot don’t we? But it is worth it. I feel strongly that every step we take will help the medical community learn more so future women won’t have to have to takeany steps down this road.
Kind wishes to you all!
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Ann,
I am a huge fan of ports. I have a Bard Power Port, and that thing rocks. PICC lines are hard to maintain because of the opening in the skin. A port is installed so that the skin grows over the device, and it is accessed with a special needle for each treatment. Much less chance of infection that way.
I maintained my Mom's PICC line during her cancer treatment, and it is a huge pain in the fanny compared to a port. As I recall, she had to be careful bathing and showering, and she got at last two staph infections that I recall. I've had the port six years with no issues at all.
I loved Halaven. I had a complete response to it - it's the only chemo that has gotten me to a total remission. It is tough on the veins though, so if you are a hard stick, talk to your medical team about ports.
Jennifer
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Thanks Jennifer! I’ll look into getting a port. Given everything probably will need it in the future. I’m so glad Halavan was successful for you- gives me hope!!!!
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Hi ann1999 - welcome! I agree 100% with Jennifer, the port is the way to go. Saves your veins and mine doesn’t hurt at all. You just put this prescription cream, called Emla cream, on your port about an hour before you have chemo. Numbs it so well, I don’t even feel any pain when they access the port.
Glad you read some of the recent posts, as there seem to be several new to Halaven here lately. I’ve detailed my experience with Halaven in the last day or two, but definitely let me know if you have any further questions.
Best of luck to you on Halaven and we look forward to keeping up with how you are doing!
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Thanks southernsurvivor! Your info is very helpful - thanks so much! Still haven’t heard when I will have first infusion but have asked for a port. Also waiting to hear when they are going to do the liver biopsy (suppose waiting for insurance approval). Had liver biopsy couple months ago but one lesion grew on I/F and hoping to find out if any receptors changed...
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Add me to the port fans. Wouldn't do it any other way.
Dr appt yesterday had me skip Halaven and only do Keytruda because of the rash I got. Wants to see if it was a reaction between the two. If no rash I get Halaven next week. If a rash I don't know. We may switch to something else?
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Milwmama - I hope you are feeling better today - no rash and good results.
Just thought I would chime in on ports - I love mine. Would not do without it. I don't even use the numbing cream anymore. I hate needles and the port really helps with that.
I did not get my Halaven Friday - my insurance took it's sweet time approving it. They had up to ten days to approve it and they waited the entire 10 before they said ok. Of course day 10 was when I was scheduled for my first dose. They approved it several hours after my appointment. 🤨☹️ So am going in tomorrow morning (Wednesday) to start my first round/cycle.
I have a hair appointment scheduled for Saturday. My stylist said that if my hair comes out within two weeks after, she'll cut it again (really short) for me for free. I expect I will be taking advantage of her offer. Cold capping sounds neat, but the price sounds super pricey for me. The diy method sounds interesting, but a bit involved. Not even sure I know where to get dry ice. Could be I am just unmotivated. Not sure I could deal with the disappointment if I went to all that trouble and it didn't work. I lost it once. I can do it again. I got my big girl panties out and ready to go.
I hope all you guys are having a good evening. Thanks for reading. It is nice to have a place to go where people know exactly what you are going through. Hugs to all of you. ❤️❤️❤️
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Today, around 8:30, I got my first dose of Halaven. 30 minutes prior, they gave me an anti nausea (aloxi) and a steroid (dexamethasone) which helps the aloxi work, so they tell me. I was doing O.K., until I decided, around noon, to eat. Butternut squash soup, some crackers, and corn. Immediately felt bad - nausea and a bit crampy, along with a headache. All normal side effects with this drug. I took two OTC naproxen for the headache - got some small relief, but not total.
I am at work - I want to get a few things done before I go home. But my stomach disagrees. It wants to go home, take a lorazepam (good for nausea) and lay down. Not sure who is going to get their way yet.. I am waiting for it to subside, but not quite sure that that is the direction it is going.
Some people say that the first couple of infusions are the worst, others feel the opposite. Like any of these drugs, everyone seems to have a different experience. You just gotta dive right in to see what you get. Right now, I am not enjoying my individual response. Time will tell, I guess. Thanks for reading. 😊0 -
oh Kriet, sorry for the miserable reaction. My pre-meds are dexamethasone, kytril (for nausea) and Pepcid. They also give me a small dose of Ativan, as they say it helps with nausea too. Honestly, I haven't had any issues at all the day of chemo or the day after. I feel completely “normal" (if there is such a thing!) Chemo hits me that second night and then the next few days, although nausea isn't a problem. I do have a constant metallic taste in my mouth and then just overall don't feel well on those days. Nothing specific- no headache or nausea. Just tired and almost like I'm catching an illness. I do have intermittent diarrhea too, but not too bad. Then after a few days of that, I start to feel better. I usually feel quite well on my week off, which I always look forward to.
I'm one of those that felt worse the first 2 infusions of Halaven on the 1st cycle. Then subsequent cycles got better. Now I'm finishing up my 15th cycle and there are days I just want to lay in bed. You are right - we all react so differently and it's so hard to manage when you don't know what to expect. Hang in there - after a few cycles you will know much better what to expect and will be able to manage easier. I have also found I feel better when I drink lots of fluids with and after the infusion.
Take care - I hope you start feeling better soon. Keep us updated. 💕
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Southernsurvivor - Thank you for the quick response. I am heartened by your experience. Maybe mine will get better over time too. Not looking forward to the fatigue, but one thing at a time, yes?
Update:. After a couple of hours, I started feeling much better. Back to normal, in fact. I finished my work and went home. I even picked up some sandwiches on the way home (mine was vegetarian with whole wheat, artichoke, cucumber, red pepper, etc).
I tentatively ate two bites and waited. Had a couple of chips and waited. Drink of water - waited. It was all good. Ate half of the sandwich because I did not want to tempt fate. Then, still feeling fine, I remembered that I should eat a couple of prunes for the possible constipation S.E. That was my down fall. Not sure if I just crossed the maximum volume my stomach was willing to put up with, maybe the prunes expanded with the water. Maybe it was just coincidence, and I would have had the pain either way. Or some weird thing involving my liver tumor and the sugar from the prunes + Halaven. I doubt that last one, but who knows.
Anyway, right after the prunes, the intense pain kicked in. Stomach, liver area. A little nauseous too, but the pain was incredible. Panting, sweating, hard to talk pain. I tried walking, laying down, sitting - nothing. An hour later and I am a little better. Sweating is better and only a little labored breathing. Tolerable. Live and learn. Next time I will try one fourth a sandwich, more waiting time and one prune. Hey, I could stand to lose some weight, so .... Glass is half full...? Not sure even I believe that, but that is what I am going with. 👍🏼
Sorry for the long post, but typing is distracting me from my discomfort. Hang in there ladies, we can do this! ❤️
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Hi K, I lasted only a few infusions on Halaven, so am no expert. I was concerned about the pain level you were having yesterday, and hope you will call your oncology people about that. Discomfort is one thing, but sweating and feeling acute pain is another. You are a real trooper, but consider checking out this reaction to eating, as it sounds bad to me. Good luck with getting the help you want to reduce the digestive effects of this chemo. Hugs, Mam
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