Halaven - Day 1
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They gave me Dex too! I talked them down from 8mg to 4mg. I was told it's to prevent nausea and if I don't get any they can go to zero.
Of course I have a coughing cold and an ear infection so I now have a complete pharmacy swimming in my veins. They gave the Halaven anyway.
So far it just feels like I have a cold. And an ear infection. Cancer? What's that?
Edited to add: P.S. I declined the cold caps. If this was only 8 infusions it'll be worth the money but I'm hoping to be on this drug for a long long time so would rather spend the money on something more fun.
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Teachermom, Abraxane was pretty tolerable. Hair loss was the biggest side effect. Over time, toward the end (7 months of treatment), the neuropathy was a challenge in my feet/ankles but not too many side effects. A bit of fatigue but it was minor. The 3 week schedule is certainly convenient and my blood counts remained in good shape the entire time. Halaven will be my first "weekly" chemo although I know there is a week break every two weeks. Still, it is going to be a challenge for me with work, mostly due to the cold caps. I am thinking of ditching the cold caps and switching to icing my feet instead.
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How long did it take, for those here who have had Halaven work, to see the results? I have scans at the end of January so that puts me at 4 infusions on Halaven. Hoping it works quick!!! Skin mets have started to get gross. On the plus side I found a great concealer so i can try to wear normal shirts again.
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JFL I found Halaven doable, some fatigue, and of coarse hair loss. Even with capping I did thin but not too bad, I was able to manage without a wig, and shedding was only intitially and then completely stopped...to the point where I considered ditching the caps, but was afraid to undo all my efforts.
My MO was insistent that I start abaraxane with carbo three weeks on one off. I will cold cap, but I am really afraid that this combo will not be successful. I hate cancer more everyday.
Feel well!
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Parrynd1, My wife's case is very complex and it all started in November of 2012. She was diagnosed right off with 3 different breast cancers at once. In her right breast was a large ER/PR+, 100% estrogen, Grade 1 tumor. Inside that was an ER/PR+ 30% grade 3 tumor. In 9 of her 19 lymph nodes removed was triple negative metaplastic breast cancer. Lifetime AC and radiation got rid of that mess. Some 18 months of various estrogen blockers failed to stop the cancers return. A biopsy was done on a metastasis to her hip which showed it 2% ER/PR+ and the rest TNBC. I'm leaving out some other things like operations on a huge ovarian cyst and a large benign tumor on her kidney.
She was on capecitabine (Xeloda) for about 18 months and that kept her extensive spinal and hip metastasis in check. Eventually, it stopped working altogether. The Dr. said her spine lit up solid red from top to bottom. Next, her oncologist tried eribulin (Halaven). He related that it seemed to work well on TNBC when capecitabine failed. SE's on eribulin were hard for her, especially this roving pain; you know three days of painful forearms, then a knee, etc.
Wow, did it work though! Her last PET scan from 3 months-ago showed she was completely clear of cancer. NED! She gets another scan in two weeks then, if that's clear 2 months off.
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Oh Mike that’s incredible! I can’t imagine how crazy scary this has been for you as 1 cancer is complicated enough. I also have TN so im hoping Halaven kicks butt and takes names. When did she start to see results from the Halaven? Is her spine feeling ok? I don’t have bone mets but I know they work a little different than tissue mets
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Parrynd1,She knew for sure after about the second or third cycle it was working then confirmed with a clean PET scan at 3 months into Halaven. Yes, her spine feels fine now, no sharp needle like jabs.
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Mike, your wife's experience with Halaven is encouraging! I am hoping Halaven works quickly and effectively on me as well.
I have my second round of Halaven tomorrow. Supposedly, this will be my last and then I will go into the FGFR treatment clinical trial. However, given the debacle with the trial application process to date, and the likelihood that the delays will continue, I am not holding my breath. I also was doing some research and seemed to read in the clinical trial fine print I found online that there is a 4 week washout period before the medicine can be administered. I had to reread the paragraph about the washout numerous times as it is so poorly written and confusing. (And I am a lawyer and spend my days reviewing and interpreting legal fine print.) It seems hard to botch a paragraph on a washout period but the drafters of this text managed to do so. There are various exceptions to the washout, various phases to the trial application process with different washout requirements in each phase (prebiopsy, post biopsy, post initial application, post second application, etc.), and the phases themselves are poorly defined and ambiguous. There are also limited circumstances where a doctor has discretion to waive the washout period for some applicants during some of the phases and the washout period is not applicable if the NCI receives the biopsy in one manner but not another. Clearly, the doctor or researcher wrote this who was more interested in the actual trial than the description of the trial and was probably in a rush. My MO never mentioned the washout. If I would in fact be required to do a washout, I will be annoyed. I came from Doxil which is only given every 4 weeks and a 4 week washout would mean no treatment delay. I would have preferred to simply have another round of Doxil while waiting. i had started to progress but it was keeping most of the cancer in check. After waiting 3 weeks after my last Doxil was due (7 weeks total) to get into the FGFR study, I finally insisted on starting some treatment in the meantime and was put on Halaven. I am not going off Halaven for 4 weeks after that. I am mentally preparing to remain on Halaven indefinitely for now and if the trial actually comes to fruition, then that will be a nice bonus. My bloodwork on my first infusion last week had my liver enzymes (AST and ALT) and alkaline phosphatase elevated - a bit of a jump in all three since being off treatment - but both tumor markers were at a record low, significantly lower than either have ever been in the 12 years since my early stage diagnosis. Secretly, I am hoping that means I am having some sort of spontaneous remission although I know that is not likely. It probably means my liver tumors are too busy building up in the liver that they haven't started shedding into the bloodstream yet.
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JFL trials are can be such a pain in the ass. I also learned about the washout period, but luckily it was very short and ended up not really mattering when I changed treatments. I think they word it ambiguously to give themselves loopholes in case something happens. They also make sure to word it so the things they need are very specific, as with, biopsy collection technique & handling. How are you feeling on the Halaven so far? I have my second round Monday. Maybe the Halaven is working already and that’s why your markers are down? One can hope..
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If I had a dollar for every crappily written consent form I've read. . . It's usually the single center the docs wrote their own that's a problem. Drug companies know how to write this stuff.
I once had to point out that a consent form had some direct contradictions. LOL. I guess the IRB didn't bother to read it either.
Is this the study at NCI where they're doing something like CAR-T cells? Looks interesting.
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OK, I had my second injection today and it was a marathon. I arrived at the cancer center at 8:30am and didn't leave until 5:30pm. For a 5 minute Halaven injection that the nurse pushed into my vein in less than 3 minutes. Total sh#! show. I had to wait nearly 3 hours for the drug to arrive. I learned my cancer center is renovating its pharmacy and is driving all chemo for all patients from its satellite cancer center facility about 15 miles away two times per day only. WTF?! It seems there must be a better way. There were also lots of delays and I ended up wearing the cold cap for 45 minutes longer than the required 4 hours needed due to delays with the nurses. The poor woman next to me put her cold cap on nearly 3 hours before the medicine arrived while I waited until it came to put on the cap. She never complained either. I can't imagine wearing the cap that long. No one told her that the drugs weren't coming any time soon, which seems weird. I would have told her myself but thought she was receiving chemo already when I arrived in the cold cap room.
Parry, I am feeling good so far on Halaven. No side effects yet although it has only been 8 days with my second injection today. When my tumor markers were tested, it was a few hours before I started Halaven so the low markers weren't the result of taking the first dose. However, I did receive some good news today before my second treatment. My liver enzymes (AST and ALT) and alkaline phosphatase all decreased from last week, which is likely due to Halaven! It is nice to know it can work quickly. Not all chemos kick in right away. Have you had any side effects from Halaven yet?
Pajim, the trial is one of many baskets in the NCI MATCH trial which is matching up persons with solid tumors of any type of cancer with drugs that align with a mutation that the person has. No CAR-T cell treatments involved in this basket. It is a basket for FGFR amplifications of any type (there are numbered FGFR alterations) where the patients receive an FGFR inhibitor called erdafitinib, a drug already FDA approved in urothelial cancer with FGFR mutations/amplifications. My MO liked that the drug in this basket is more advanced in that it has already been proven to work in some type of cancer with this mutation. I have FGFR1 and FGF3 amplifications, although I am not sure if this arm covers FGFR (the fibroblast growth factor receptor) alterations only or FGF (the fibroblast growth factor itself) alterations as well. There is also a chance that the FGFR amplifications don't show up in this current biopsy. All in all, I wouldn't be surprised if the genetic test results are significantly different than my previous genetic test. I had the first test on a supraclavical lymph node from the time of diagnosis over 4 years ago, before any treatment and while I was 7 months pregnant with all sorts of female hormones and growth hormones pumping through my body. Also, a mini chunk of my oncology surgeon's finger flesh was cut off and made it into the biopsy sample. (Freak accident, although very, very minor.) Now, I am postmenopausal with no ovaries, heavily pretreated with hormone therapy, targeted therapy and chemo, on my 6th line of treatment and the sample came from one of two liver lesions that stopped responding to Doxil although the rest of my numerous liver tumors were still responding. It is all kind of a crap shoot!
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Oh one of those trials. Those are great! There are actually several of them but I think only the MATCH is doing it based on genomic testing.
I'm sorry about the pharmacy and the entire day spent at the center. I'd have suggested that I come back when the drugs arrived. . . [not that they would have gone for it but you could try]
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Well, an update, I apparently have another Keytruda (immunotherapy) related complication, colitis. I started having diarrhea that was controlled by immodium. That stopped working and I had to switch to Lomotil but the diarrhea turned very watery-could see pills in toilet floating. I was having 3-4 episodes in a day (over norm), a tender abdomen on palpation, and cramps. Friday I was put back on high dose steriods (60mg) which made me MAD (!); I had just tapered down to 2.5mg from the earlier kidney issue. I see a gastroenterologist tomorrow-nice to been seen so soon! They will probably want to do a scope, and we'll see what else. I've heard there is a steriod that just effects the GI tract....I hope they can switch me to that! This systemic steriod, prednisone, I don't like.
I'm actually feeling pretty good overall. Bummer. I was able to get the Halaven (eribulin), so that was good and they thought I was slightly dehydrated so they gave me extra fluids. I have scans in a couple of weeks....it's hard waiting especially with this new complication.
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JFL awesome news about the liver. I hope it keeps working well for you
and so quick! I was worried about how ok I feel whether it Halaven was working so your news is also goods news to me! So far I started to loose my voice the day after first dose and it came back around day 3, but other than that I’ve been just slightly tired. Next dose is tomorrow! I can’t beli how long it took for your infusion. You would think they would want a faster system to get more people in and out...that’s just simple business practices. I have to be at the airport tomorrow by noon with infusion at 8am so I hope it runs on time. I was able to get pre-chemo labs done today to help speed up tomorrow.
KPW hopefully they can do something to resolve the colitis. I always think I’d rather be loose than stopped up, but it plain sucks either way. I had many side effects from Immunotherapy and was pulled from the trial I was on because of it. I even have some swelling (they aren’t sure if it’s swelling or cancer) in my brain lining they think is an immune reaction from the Tx but they have no clue. Even said they’ve never seen this before so everyone is just guessing. Oh the fun things we get to deal with on this ride! Hope you feel better soon and at least they got you an appointment right away gotta look at the positives. 0 -
Does anyone get random, brief shooting pains from Halaven? I have noticed in the last week that I will occasionally have a sharp, shooting pain, that seems to be nerve-based but in the muscles, in a random area of my body. I had one today in my mid-lower back that went across my back horizontally in one razor thin area and the other day, I had one in the muscle on the back of my thigh, right above my knee. They have made me jump when they happened. The pain itself is not so bad as it goes away quickly but it more freaks me out, like I am being zapped. Could this be from Halaven?
KPW, sorry to hear about the recent colitis challenge. These immunotherapies are so tricky with the autoimmune triggers. Would be wonderful if the medical community could figure out how to get them to selectively target cancer cells only. There have been a lot of advancements in treatments for colitis. I hope your doctors can get you on a local steroid or something better than prednisone. Prednisone turns me into a super turbo-charged version of myself in a scary way - my personality completely changes.
Parry, have a good time on your trip. I have generally heard that Halaven is very tolerable. No need to worry if you feel relatively good! Have you lost your eyebrows and eyelashes yet? How is your hair holding up overall?
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Lulubee, it seems my mets have gone into the pericardium too. I would love to hear all you can tell about the operation you underwent. I am currently on Halaven, I will know on Thursday what the oncologist will propose to deal with these latest mets. I'm supposing she'll want to wait and see if the Halaven does it any good.
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Amarantha, I'm so sorry you are dealing with this. My pericardial mets have been stabilized by treatment for over 8 years, except for one episode when Xeloda had been failing for several weeks before we caught on, and then I got caught in an insurance coverage crisis for my next treatment which caused discontinuation of treatment for a few weeks. During that time, the pericardial mets went berserk and I wound up in ER with almost a liter of malignant fluid crammed into a little sac designed to hold an ounce or two of fluid. I had to have an emergency pericardiocentesis, and I had considerable lung damage from it and had to have 24/7 oxygen support for almost two months. I did recover, slowly. Treatment has kept my pericardium quiet ever since then. That was two years ago this month. It is terrifying but do not consult Dr. Google about it. That was a big mistake! I completely panicked, but my MO just shrugged and said, "It's just more of the same. We treat the bones, we treat the pericardium. Onward."
Pericardial mets are extremely rare. In 11 years on these boards, you're maybe the second other person I've run across who had them. PM me if I can be of more help in any way. All the best to you.
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JFL, I have those sharp shooting pains, also. Like you describe, they are random and they do not seem to have any limits for where they can hit.
I am currently experimenting with taking Source Naturals Magnesium Malate in the morning and sometimes also layering in a dose of Natural Calm with Calcium (magnesium citrate in a fizzy powder) before bed. The malate form of magnesium is commonly recommended for people with fibromyalgia and muscle pain, so I figured it was worth a try. The malate form can increase energy so it's best to take it early in the day, whereas the other forms of magnesium help with sleep.
It does maybe seem to be helping. When I slack off on taking it, I get all kinds of spasms. It's really awful.
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Hi everyone,
Thanks for all the info you’ve shared about your experiences with Halaven. I’m starting it next week.
I don’t have a port. Do you think my veins (they’re good) can manage the 5 minute injection?
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Hi Cita, I've had two infusions so far. One with a hand iv and one with a forearm iv. There's been no mention of a port. You'll do fine.
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My wife is a very complex case so here's the simplified version. She was on Xeloda (capecitabine) for her too numerous to count metastases to spine and hip. During the 18 month period she was on it her ER/PR+ turned triple negative. My wife's Oncologist had extremely good luck with another of his TNBC patients while on Halaven (eribulin). My wife tried it and it seemed the Halaven worked real fast and it whipped out all the cancer, everyplace. She's now NED and we await the results of her latest PET scan. Her previous scan 3 months ago showed her to be clear. He indicated that his experience has shown Halaven to work well on TNBC.
Now side effects of this stuff hit my wife hard. A severe "floating" sharp needles pain, that moves around from day to day. Nausea, hair loss, stomach cramps, etc.
WOW! Wife just got off phone from Kaiser and results of yesterday's PET/CT show her clean of all cancer!
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Lulubee, thanks for the magnesium product recommendation. I am going to check it out.
Cita, I have had 2 Halaven doses with no IV. In fact, I have been on IV chemo 1.5 years with no IV and no issues. Hoping I can keep that up. I had a subclavian blood cot related to my cancer when I was early stage and ports in that vein make me nervous due to my history. My IVs are usually done somewhere on my top or outer forearm but range I. different areas between hand and mid arm. Good luck Halaven! I hope it works wonders for you.
Mike, fabuluos news about your wife’s scan results! It gives me hope that Halaven has worked so well for her
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Mike3121 Congratulations on your wife's scan results!!
I've been taking magnesium for some time and I think it helps. I have also been sleeping with a heated blanked around my legs/feet and it has really decreased the amount of leg cramps.
Update on my treatment with Keytruda and Eribulin (Halavan). I had a colonoscopy done yesterday which did show a very small area of colitis and the villi in the start of the small intestine were blunted. So, it is being recommended that with 3 autoimmune toxicities (thyroid, nephritis-resolved and now colitis) to stop the Keytruda trial. I have 8 weeks to stay on the trial before being kicked off due to stopping the pembro....the tentative plan is to stay on trial for the Halavan and depending on scan results go from there. My MO's opinion (and those he has consulted with) is that it might be dangerous to try more at this time, I could potentially have a far more serious autoimmune toxicity. I think he is, unfortunately, correct. He has not ruled out using a different immunotherapy in the future since it appears to be VERY effective in my case. I'm disappointed, but don't want anymore potential toxicities.
Scans next week...
susan_02143, how are you?0 -
Mike, congratulations!!! That's just awesome.
I have a couple of questions for all of you. I'm on day 11 of my first cycle. I've had a cold & ear infection most of this time. (Yeah I know, insult to injury) It feels like I wake up in the morning with whatever side effects I'm going to have that day, then by about 11:00am they are gone. For instance, when I got out of bed today, my hands were tingling (wrist to fingertip). But now its gone. Yesterday I was woozy beyond belief but it went away too.
Is this usual?
Second issue is appetite. I have none. In fact I have trouble eating much. And lo, yesterday I develop a mouth sore. Sigh. More insult to injury. Mouth sores aren't on the SE list for this drug are they?
Maybe the antibiotics and the old medicines and everything else is messing with me. Tell me I'm going to feel better by Monday. . .
My experience with new treatments is that it takes me a month to figure out how it's gonna work and what it's gonna do to me. In the meantime I whine and curse a lot. Right now I'm in the middle of the cursing period.
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Pajim, I have had a bit of minor mouth sores and have had some random tingling - like when I went walking today, my back/trunk was tingling. I am relieved it is only transient. I haven't had nausea. My appetite has significantly increased on Halaven - either because I am no longer on Doxil, because my moderate - severe anemia is improving or because Halaven is shrinking the liver tumors. My appetite has been low for a year and a half, since I have been on IV chemo. I have always felt it was mostly driven by the medications rather than the liver tumors. My liver has been much, much worse without impacting my appetite. Some of our experiences may differ based on what we were taking previously. You came from Verzenio? Maybe the already beaten up digestive system is impacted more by the Halaven . . . . If so, that may improve after some time has gone by.
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A question for all of you on Halaven. Did you lose all of your eye brows and lashes? Should I expect that? I have noticed a few hairs have been shedding from my brows. Nothing noticeable yet but I see a stray hair here or there.
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JFL, I had already lost eyebrows and eyelashes on Abraxene when I started Havalen. I'm on such a low dose of Havalen now both are growing back, as well as the hair on my head
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Trying to catch up as we are still out of town. Sorry if I miss anyone.
Still feeling ok after the first 2 weeks. No appetite at all. Two of my toes have started to feel funny, similarly, when neuropathy came on during AC in 2017. Also mouth sores. Drinking something warm with milk helps my mouth feel better for whatever reason. I have shootings pains in the right breast and skin mets, but tht was there before Tx. Hair is still holding strong! I got long extensions put in for our wedding and was worried the extra weight would hasten the hair loss. So far so good. Scans in a few weeks to see if it’s working.
Take care every
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Two weeks in for me too. My cold has still not gone away nor has my ear unblocked. The last three days my cough has caused me to vomit anything I successfully eat, which isn't much.
So today I called in to say I was miserable. Five hours in the cancer center later I have a liter of saline in me, magic mouthwash for the sores and some fancy dancy cough suppressant which seems to be working. The mouthwash makes me retch but miracle of miracles I can eat and drink!
Apparently my lungs are clear but I have next to no neutrophils (hello mouth sores!). So now I just need to wait for the bone marrow to generate more neutrophils.
But. Adding insult to injury, if I run my fingers through my hair I get a fistful of hair. I should just get in the shower and get it all out but funnily, I'm afraid.
Sigh. Should I be grateful for no nausea and no neuropathy? LOL.
In a month I'll wonder what I was whining about.
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When I lost my hair on AC I didn’t want to let it go and held on as long as I could. Funny enough I felt better when it was gone! No more waking up to hair fallen out overnight all over my vest and face in the morning. No more sad pulling chunks of hair out. Plus it was easier to take a shower which i could hardly do at that point so this was a big relief for me. Two of my toes started to feel numb. Glad we can ride this ride together though. It feels like I’m on a roller coaster going up, knowing it will drop off eventually and hoping it’s a positive experience in the end.
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