Halaven - Day 1
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Amy, three infusions of Halaven, which is all I got before I had to pause it for other stuff, took about 3/4 of my hair. It is still coming out in the comb. I got a shoulder-length cut, but at this point I’m wearing caps, scarves, and bandanas. I also have a really great pixie wig. I wore it to lunch with a group of DH extended family the other day and I passed. I was complimented on my hair cut.
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Hi everyone. Just wanted to stop by and introduce myself. I'll be starting halaven sometime next week. I have leptomeningal mets, nervous but eager to get treatment started.
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Amy, I came into Halaven bald so I can't really comment on the hair issue, other than to say I did get a little fuzz growth on it. I scanned after 3 months, maybe 6 cycles, and scans showed stable. At that point I was pretty wobbly due to fatigue and weight loss, so took a month off. But again, I came into Halaven fresh from dose-dense taxol and gemzar, so wasn't at my peak to begin with. The month off really helped, now I'm back on and will scan again at end of December.
Shetland, like Pajim, I want you to be better RIGHT NOW! Unbelievable the hoops you had to go through to get a hospital bed, much less a CT scan. I'll be praying for a clear path forward for you. In the meantime, I hope you're comfortable and pain free.
Allybee, welcome. Although you wouldn't know it from reading recent posts, many women do quite well on Halaven. It's just that we've been going through some things, many not related to current treatment. The protocol itself is pretty easy, just a 5 minute push. Pre-meds vary, I just do Zofran prior, but some also do steroids. SE's vary, of course, but the most common I read here are fatigue, maybe some nausea, headache. I've had some neuropathy and make sure I ice my hands and feet for at least 20 minutes prior to the push and 5-10 minutes afterward. Good luck, shoot us any questions you have, and we'll look forward to cheering you on!
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Yup, still pain-free right now from the liver biopsy drugs. It looks like tumor growth is the cause of the pain. I think we got enough for foundation one this time! I won’t be surprised if my onc recommends a different chemo. Even though I only had three doses of halaven before I had to go off it for several weeks.
Hello, AllyBee. I recognize your name. Wishing you a great response to Halaven. My onc said that at a recent conference it was reported that response to eribulin/halaven was longer than for many other chemos.
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Thank you Shetlandpony and Jaylea
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AllyBee - welcome to Halaven. We are a small group but have much to share.
So nice to hear from everyone. I must apologize I’m not really able to focus and type but wanted to check with you all; I spent last night in emergency again with a pain event, they got that under control and released me and now I’m trying keep it under control at home. Not very successful yet, as I am having a hard time remaining pain free and awake.
I’m having day 1 cycle 3 tomorrow. My hair loss seems to have levelled off, not bald but need a hat
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Oh, Kayla, that’s awful. The choice between pain relief and being awake is a lousy one. Can you consult a pain specialist? Sending fervent wishes for a good solution so you can get back to living your life.
“Not bald but need a hat” Exactly. Perfect description of me, too.
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I hope everyone is doing well! I got turned upside down today. 🙃
I had to go back in my calendar to see how many cycles I’ve had. I thought I was on 9 or 10 but I’ve actually had 12 cycles. My WBC has stayed in a good range even without those awful shots I was getting for a while. Neuropathy has been my worst side effect as well as those “blah” days for a few days after each treatment especially the second week. Some nausea. Muscle tightness that is so weird - yoga stretches are a little harder each week. I was on Abraxane before Halaven and lost a great deal of hair so I shaved it and started over. It’s much thinner than before but I’ve kept it short. The wigs are still in the closet ready for the next change in treatment.
I was scheduled to start my 13th cycle tomorrow but met with my oncologist today and he had the results of my biopsy that took three weeks to get an appointment. Even after talking to my oncologist the radiologist wanted me to have a mammogram but I finally had the biopsy on Thursday - no mammogram. Genomic testing results won’t be back until next week or so but the lymph nodes came back as triple negative. So I won’t be on Halaven any longer but will continue the faslodex. If I have any PD-L1 expression then I will go on Tencentriq + Abraxane. If not then I will go on a platinum based chemo. At least that’s the plan we discussed today. It wasn’t quite what I was expecting but then I don’t know what I was expecting.
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Wandering, any news of change of treatment is an emotional challenge, to say the least. You've been on Halaven for a while, and you likely went into the appointment thinking you'd continue. I didn't realize you were also doing a hormonal. I hope your next treatment allows your neuropathy to resolve.
Kayla, so sorry to hear you landed back in the hospital, and that you're struggling to manage the pain. Hopefully you'll hit on the right combination to keep you comfortable and alert. Good luck with cycle 3.
I've been having jaw pain and naturally my thoughts turned dark - jaw mets or ONJ from Zometa. Went to the dentist yesterday, he reassured me that since there has been no trauma (i.e. extraction), the risk of ONJ is very, very low. Because of where the pain is, and its intermittent nature, he thinks it's muscle pain from clenching my teeth at night. Makes sense, it's the most sore first thing in the morning, then disappears during the day. I'll try some home remedies before I think about going to a night guard.
Shetland, a really great wig makes all the difference. It's a confidence booster and an easy fix for those days when you don't want that blaring billboard telling the world you've got cancer.
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Shetland - I can't believe what you have been through this last couple of months?! And although it sounds very similar to my pain, I definitely didn't need stents, bile ducts clear etc. and although liver function blood work show elevated levels nothing outrageous yet. But tumour growth seems to be the common factor between us. My cancer care Dr. showed me a closer look of my last ct; almost half the liver is now taken up but there is a clear part of one tumour protruding and hitting the diaphragm, causing the pain. My pain med doses have been doubled and a different antiinflammatory added and today I feel more on top of the pain. We discussed changing chemo we ultimately agreed on trying one more cycle. Is your chemo drug changing because of the biopsy or because of the accelerated growth? Oh my goodness I have so many questions, Shetland....if you change chemo I'll have to try and keep track of you're progress, lol that might be called stocking eek.
Wandering - Having been on Halaven for so long it must be very stressful to know the cancer has changed and yet another chemo protocol to be started. Is there any idea how quickly that can be started?
Jaylea - hope your jaw pain is resolved asap. I guess relaxation techniques may work, although I've always had trouble being consistent with that. I hope the fires are getting contained and put out.
Regardless, of all our recent setbacks I remain confident Halaven will shrink some of my tumours, which should relieve some pain and hopefully I'll get 12 cycles like Wandering out of it.
Thoughts and prayers to all.
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Jaylea, I wake up with jaw pain on some days. I must be grinding my teeth. Too much stress! Thinking about too many future things.
Shetland, I hope your pain-free days continue after that biopsy! I know how much mine hurt under my arm but the middle of the body has to be greatly uncomfortable. My hair has greatly thinned and if I get another make-your-hair-fall-out chemo I may get another wig to join the 3 already on my shelf. It’s getting to be wintertime and I hate to be cold. I hope you get some good treatment answers from your biopsy. It’s an awful wait.
Kayla, I hope the Halaven works well for you for a long time! It was working so well - my primary tumor shrunk tremendously and the bone mets stopped growing and then the lymph nodes swelled. I was hoping to stay on it at least through the holidays even though the neuropathy is creeping up. Once I quit the steroids and CSF shots it became much more tolerable and side effects were predictable except for my hair shedding. It doesn’t happen every cycle and it’s like the dog shedding - not great amounts of hair but enough to notice. It seems all my dark hair has been falling out and leaving me with lots of gray. 😆
We’re waiting for the genomic test results to come back to see what my options are. If I have a PD-L1 mutation I’ll go on tecentric with abraxane. If not I’ll get a platinum chemo. I’ll stay on the faslodex to deal with the primary cancer that is hormone positive. Triple negative does not have a lot of options and not a great survival rate so I hope for a treatment to give me some time.
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Hello from Stockholm
Halaven/eribulin day one with cold cap and extra Herceptin since I skipped a month from chemo while they re-evaluated what to do next. Darnit, that month off chemo made me feel so much better, it was hard going down the rabbit hole again. Have slept all day bua am stable.
Was a candidate for the SYD-985 TULIP study but rejected because they assign me as HER2- though my hospital is very sure I am HER2+. Both did the full analysis including ISH but it gave radically different HER2/CHR17 scores. Since I was originally HER2- the oncologist thinks this means I have a highly heterogeneous bunch of cells mutating differently, which makes me a poor candidate for targeted therapies, conjugates and anything else that doesn't have horrible side effects. Sigh!
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Hello and welcome, arolsson. You're the first person I've seen do the cold cap with halaven. I'll be curious to see how it works. I'm with you on the chemo break, I'm just off a month break myself. I'd forgotten what feeling normal/good is like. It's hard to give that up, but I figured the cancer cells didn't get the memo to take a month off, so back on treatment we go.
How frustrating that you're presenting as both Her2 positive and negative. You're sure making your cancer center earn their salary. I hope eribulin is just the ticket to keep you stable with minimal SE's.
Kayla, so glad to hear you're pain is more manageable. May every day be slightly better.
Sending hugs to Wandering, Shetland, Pajim, Amy, Allybee, and all those my chemo brain missed.
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Wanderingneedle, You have bone mets like me right? I get really severe muscle cramps in short bursts that my physical therapist says may be my muscles trying to compensate for the decreased stability they sense in the bones. On the other hand the cramps have lessened since stopping Kadcyla...
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Arolsson, I think many of these drugs have side effects not mentioned in the information because of a buildup in the body. A tolerable toxicity? Also, other things that would have no effect if you weren’t on these drugs such as, not enough water, or protein or a particular vitamin or too much alcohol or caffeine or any number of little things that would affect each of us differently. My muscles feel very tight and every week when I go to yoga I have to work harder to stretch them. The only good thing about this diagnosis is time off chemo. It ma not be much time but I’ll take a week when I can get it!
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Ha ha, Kayla, please feel free to stalk me. When I knew my chemo would change, I immediately regretted that I would no longer be an official member of this little Halaven group. Such lovely people! My chemo is changing because of the growth. My onc and I feel we can’t afford to wait and see if Halaven kicks in. The recent growth seems faster than has been typical, and may be going to scarier places. I start Doxil next week, unless — wait for it—- my Clostridium dificile test comes back positive. I’m sorry you have so much pain. I hope Halaven does it’s job of tumor shrinking fast, which should relieve the pain.
Wandering, I’m confused. If the cancer has turned triple negative, why would you stay on the Faslodex? Does your onc suspect there are two subtypes happening at the same time? Here’s hoping the genomic testing provides clear guidance on your chemo choice. If that triple negative cancer has a BRCA mutation (in the tumor, not you), you could use a PARP inhibitor, which can be quite effective.
I have Foundation One in the works, from this week’s liver biopsy, and also got my onc to agree that we should order Guardant 360 liquid biopsy as well. We tried G360 three months ago, and there was not enough circulating tumor DNA to give clear results but there were hints of three actionable mutations (MET, BRCA, Her2). Now with the progression, maybe it will be clearer.
Yes! like a dog or cat shedding, and Halaven seems to take only the dark hair and leave the gray ones my DH so tactfully calls “blonde”. The hair that is left sticks out like straw. My new chemo is supposed to cause alopecia in 20% of patients. Guess who will be in that 20%.
Jaylea, I hope to hear you have tried the night guard and solved your jaw problem.
Hello, arolsson and welcome. Hugs all around, including Pajim, AllyBee, Amy.
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Okay Shetland, I will officially start stalking the doxil thread lol. If Halaven is not working for me (ct will be in December) my next is taxol, and then options start running out. I wish you good luck on Doxil and I truly hope we both find that one drug that slows or even stops progression, better yet tumour death.
Arolsson - nice to meet you. my major side effect seems to be extreme fatigue as well, just for the couple of days following the injection and a little nausea day 4-6 but other than that nothing; we all suspect my major complaints are caused by tumour location.
I also wish to confirm, Halaven targets dark hair only.
Thoughts and prayers to all
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I guess I'm joining you ladies here. I see quite a few familiar names here from over the years. I've been on a palbociclib trial (30cycles), alpelisib trial (10days, horrible drug for me), fulvestrant (10cycles) and xeloda (6 cycles). We're going to try Halaven & see if that does anything for me. Not sure when I will start as my cancer centre is about 6 hours away so they are trying to get me hooked up closer to home so I don't travel 12 hours for a 5 minute infusion.
Reading about all the SE's. I just know that hair loss will be one of mine as I am just getting my hair back from thinning on palbo, and I got a really cute cut a week ago!!
I did pretty good with IV chemo the first time around, so fingers crossed for this round. cheers, dee0 -
Shetland, yes there seem to be two subtypes. Nothing else showed up on the CT scan other than the lymph nodes. Even my primary tumor which was hard to get under control from the beginning of treatment didn’t show up. I’m going to ask for a scan maybe this next month - my last PET was in May - and I may seek a second opinion. My MO was thrown by the biopsy results so I think he hasn’t had a lot of experience treating people like me. Also, the imaging place where they do biopsies had a hard time understanding the need for genomic testing without a lot of intervention so had they never done it before? There is a doctor at UCSD who specializes in treating TNBC so I may try to see her to see if what my doctor is doing is the best thing. I wish you luck with doxil - I didn’t get through one treatment with it.
I really don’t know what he tested for - I hope it was everything!
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Dee, hello and welcome. It sounds like you had a good long run on Ibrance. Sorry to hear about your terrible experience with alpelisib. I think SusaninSF had a similar bad reaction to that one. I hope eribulin is an easy treatment for you and that you get a good long stretch out of it. Surely they can set you up with a local infusion so you don't have to make that trek - makes for one helluva long treatment day.
Shetland, don't think I won't be stalking you as well. Wandering, that goes for you, too.
Kayla, hope the pain is better and today is a good day.
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C. Diff test was negative! I had my first Doxil infusion today and it went well.
Wanderingneedle, I think a consult at UCSD is a great idea. As you will know, that is a NCCN center. Once you are established with an oncologist there, you can check in with them from time to time when there are treatment decisions to be made.
Jaylea, I have put you and the others here on my friends list for easier stalking.
FIngers crossed with you, GG27. Here's the baton.
Kayla, Taxol did amazing things for me, so I think it's a good one to have in your future arsenal. In the meantime, wishing you amazing success with Halaven.
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hi all,
thanks for the baton Shetland, I hope your SE's on doxil are mild. C dif is so horrible, so glad the test was negative, i had it when i was on chemo the first time around. I was admitted to hospital for an infection, put in reverse isolation for 5 days.
Jaylea, yes, Susan & I were on alpelisib at about the same time, on the same trial. But she was able to tolerate it for several cycles. I had a locum MO this time & she mentioned that it was a horrible drug, which surprised me she would say that.
still waiting to hear of a start date.... and where. but i guess my body could use a washout time. I've been on some kind of treatment for 11 years.
cheeers, dee
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GG27 - welcome, looks like we're neighbours, I am on V.I. myself. I'll be cycle 3 day 8 on Thursday. I've been lucky no neuropathy, so far. Pretty bad fatigue day 1-3, easily treated nausea day 4-6.
Wandering - such a confusing time. I hope you find the MO who knows the exact treatment you need and you can have full confidence in your health care team and treatment decisions moving forward.
Shetland - thank you your inspiration, I find it amazing you were able to suffer through your pain and yet provide guidance and support to the rest of us on bco. May you have an easy time on Doxil and be free from infections, complication from stents and ER/hospital stays. I lurk the liver thread quite often but find it difficult to keep track; so many personal stories. Even this little input took me at least 45 minutes to type out, eek.
Jaylea - how is the jaw pain, have you tried a night guard? Have you started back up on treatment after a month off yet? Thank you so much for asking, my pain is somewhat under control, i am taking higher doses of pain meds and have an appointment next week with a doctor who specializes in palliative care pain management. I am hoping to get a lot of info from tat appointment.
Have a great rest of the day everyone.
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Kayla, thanks for the heads up on your SE, glad they aren't too bad, a couple of days of fatigue don't sound too bad. Are you getting halavan in Nanaimo? They are trying to get me in there otherwise I would have to go to Vancouver. 2 ferries & 12 hours travel for a 5 min infusion. thx, dee
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Kayla, so glad your pain is lessened. My health care provider has started bringing Palliative care into the equation early on. I was only a year into treatment when my MO said she'd recommended me to a 'pain specialist'. When the call came, from Palliative, I was a little freaked out (wait-is there something my MO is not telling me??), but then they explained that this was part of their new integrative care approach. Sheesh, if my MO had said that from the beginning it would have been better. Nonetheless, I love my Pall doc and she is my go-to for all sorts of things.
My jaw pain has subsided so I'm holding off on the night guard for now. I think just knowing it wasn't cancer related has me clenching less.
Wandering, please keep us posted on your next steps. Thinking of you.
Dee, praying for Nanaimo.
Donnabelle, thinking of you, too.
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Jaylea - yes, hearing palliative care sure made me think worse case scenario too, but after leaving the appointment, i am so full of hope. I maybe pain free but the end of the week. Also, the doctor said that it is his experience that for those patients who have Eribulin work, it works amazing well. He has had a patient who got 2 years out of it. Wow, 2 years is so hopeful, my wish is we all get this gift for Christmas....2 years!
GG27 - feel free to pm me for more info on where we can go for our treatments . I didn't realize there were problems with IV chemos in certain communities. I know when I was navelbine there was a nationwide shortage and the pharmaceutical company had stopped making the drug, but it failed and on to Eribulin for me.
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Hi all! Welcome to you who are new on the drug. I hope it works well for you.
Wandering, Shetland, sorry to see you have to move on.
As for me I'm waking up slowly. As of today I'm off my walker and on to a cane. Rads are done to the right leg. I see my MO on Monday to figure out what to do next. I haven't had chemo in two months so heaven only knows what those little cancer buggers are up to besides eating out my hip joints. I don't suppose they'd go into dormancy whilst we wait out the surgeries? No I guess not.
Whomever mentioned the muscle pain. . .I 100% agree. I think the pain is because the muscles are holding unstable bones together. I should have taken notice of my leg pain long before I did. Should there be a next time I'm going to scream "incipient fracture here!" regardless of what the orthopedics people say.
Hugs to everyone!
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Pajim, so glad to see your post! Here's to chucking the walker, and to continued improvement. I read somewhere that rads help blast open cells that make them susceptible to the body's immune system recognizing and attacking the cancer cells. I hope you've got all kinds of that going on. Please keep us posted on your treatment plan. We're such a small but merry band here I plan on following each of you on your journey.
arolsson, how goes your treatment?
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Just caught up on several pages of posts. Welcome to our new friends. I hope Halaven treats you well and treats your tumors to their demise!
I have been taken off Halaven as of Oct.22. I’m not sure it was this particular drug, but rather an accumulation of two years and six lines of treatment that has just done my body in. It was such a struggle each time to keep my numbers up. I routinely had fevers and ER visits. It was just too much. Not even sure how it has or has not worked for me, because I haven’t been scanned, however my tumor markers have stayed stable. MO decided to give me a break while I got through my first Y90 treatment, which was yesterday and went very smoothly. I love the fact that the Y90 targets the liver exclusively, so it does not effect any other part of the body or cause awful side effects. In fact, today I feel great.
But good things like chemo breaks don’t last forever
MO wants me to start Piqray (alpelisib) ASAP. I got the delivery today. Sounds like several of you have heard negative stories about it. I was already scared and now I’m getting reluctant. I am going to talk to her about delaying for a few more weeks since we have a Thanksgiving trip coming up. And hopefully in the meantime, those little toxic spheres that were injected yesterday are assassinating the evil cancer cells as we speak! Won’t know for a month about that.So, I wish you all well. I will stop in from time to time to catch up. Happy holidays !
Love, Donnabelle
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Donnabelle, I'm so sorry you've gone through this recent rough patch. I love that you got enough of a chemo break to actually feel great. I did the same and the mental and physical rejuvenation was enough to go once more into the breach. And I think its entirely reasonable for you to extend the break through Thanksgiving. It's not like you're completely off treatment - Y90 is doing it's good work. As to alpelisib, I've read mixed responses, too. You can always give it a try and back off if it presents too many issues. Wherever you land, you're on my follow list, too!
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