Halaven - Day 1
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SyrMom--I've been scanned differently for all three of the drugs I've been on since my MBC diagnosis. For Faslodex, it was was every 6 months; for Xeloda, it was every 3 months. For this first scan on Halaven, it will be six weeks since I started. I'm not sure what she plans to do after that (in terms of a scan schedule) if it looks like the Halaven is working.
For my first scan on Xeloda, everything looked fantastic at 3 months (lots of regression in my bones and liver) but the second 3 month scan was a disaster--progression in both my liver and especially my bones. It was very disconcerting that the cancer figured out a work around so quickly.
My husband has been looking into Ibrance (Palbociclib) for me and we'll be discussing this with my doctor too. I've never taken any of the aromatase inhibitors (like Femara which most people seem to take Ibrance with) but I have failed on Tamoxifen and Faslodex which are both anti-estrogen drugs. Thankfully, my husband has the kind of brain that understands most of this stuff because my mind usually tunes out at a certain point.
Sorry for rambling on. Hope everyone is having an easy time on Halaven.
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I know, that's what worries me!
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I started Halaven two weeks ago and my onc said it was one of the easier chemos. Yeah right. I've had non stop diarrhea, vomiting and mouth sores. Is anyone else getting mouth sores on Halaven
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in_cognito--Have you ever tried L-Glutamine powder for these side effects? When I first had chemo in 2011, they recommended it to keep these problems in check. I took it and never had any issues you mentioned and I'm very susceptible to mouth sores. I take a heaping teaspoon 2 x a day mixed with water. It's also supposed to help with preventing neuropathy when you're on chemo.
Here's a link to an article about it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC338527.... My doctor said that a lot of their patients are on it to deal with chemo side effects.
You might ask your doctor about it.
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In congnito ... try sucking on ice chips during the infusion - helps to prevent mouth sores. Do you get any premeds for nausea? If not, make sure they give you some; if you already do, maybe something different than what you've been getting. I get Aloxi, works real well. I also get decadron, 10 mg. Don't know if it will help, but maybe they could push the Halaven just a little slower; instead of over 2 min., maybe 5 or 7 min. Worth a try.
Good luck.
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Stage 4 since November started with peritoneal implants. Did Xeloda but progressed. I am scheduled to begin Halaven today. I am waiting now to have my port placed. I failed on Xeloda which was my first stage IV drug and am very discouraged right now as I now have peritoneal implants and malignant pleural effusion. Breathing is difficult. Hoping this chemo knocks it out and my breathing and belly pain improve.
Looking forward to getting advice and cheering you all on!
Lynda
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Lyndamarie, Welcome but sorry you have to be here. Xeloda failed me too, after ruining a Summer on it and also getting hand/foot syndrome - couldn't stand the stuff! So far, in terms of side effects, I've found Halaven to be easier than others. Of course side effects are cumulative and can always change - I just hope it's having an effect cause I've been blowing through chemos lately.
My main side effect so far has been constipation - have to stay ahead of it.
Keep us posted.
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I'm definitely upset; found out my tumor markers went up again! For me the trend up is an indication the treatment isn't working. I just finished the second round of Halaven and get scanned next week. I so wanted this to be effective; so far Halaven has been good to me in terms of side effects, relatively speaking. I actually have lost my previous aversion to most foods which happened on Doxil & Adriamycin & am starting to eat anything. I also realize my options are running out. So, to say the least, my anxiety is high & it will be difficult to enjoy my week off with this over my head.
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SyrMom--I'm sorry you have to wait another week to get your scan done. It's possible that the increased TMs are because the Halaven is actually working and there are more dead cancer cells in your blood stream because of that. Unfortunately, you won't know for sure until you see the scan. I've got everything crossed that the drug is working for you.
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Thank you so much, Gem.
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Hello, all. I have been in a clinical trial with Halaven and Mifepristone since November. Last scan showed decrease in all my 5 liver tumors and next scan is tomorrow. So far it has been an easy chemo for me. My blood counts have stayed good, and the nausea is minimal. The neuropathy is gradually invading my feet. Mainly I feel weak and tired. I get muscle spasms, similar to a charlie horse, but in strange places like my hand or neck. My hair is thin, but still present.
Syrmom, I hope you have great scan results. I'll let you know how mine go.
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JimmieBell, interesting about your trial including Mifepristone - read it's a steroid that blocks progesterone. I wish you continued stability with it. I'm so glad you mentioned the strange spasms (in strange places like hands, neck) as I've had the exact same experience. One day I was driving & my neck area under the jaw started to spasm & I could hardly keep looking at the road! The spasms like a tetany, very strange. They seem alittle less frequent now since I'm off Adriamycin & on Halaven - but it could be that after a period of time on Halaven, cumulative effect. My calcium & magnesium were checked because this type of s/e is often due to electrolytes being off, but mine were all fine. No one has had an answer as to the cause or a solution. I've concluded it's a chemo side effect, but don't know what to do to calm it down. So, if you find any answers, please let me know!!
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The Mifepristone is a PR/progesterone and GR/glucocortoid receptor antagonist. It's believed that blocking them opens up the tumor cells to apoptosis. It's a small trial, but very promising so far. I was gonna do Halaven anyway, so why not?
Yea, the spasm thing is a side effect caused by nerve damage (per my onc). Guess it's not permanent. Let's hope not. I read through the earlier posts and others had the same thing. Sometimes they really hurt!
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Syrmom,
Wishing you luck on the scan. For constipation, ask them to dial back any premeds that are anti-nausea. I did this and it helped a lot. Also on glutamine, so far no issues with neuropathy.
Nancy
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To my Halaven buddies - finally some good news after blowing through 2 chemos since August & beginning Halaven in February, after only 2 rounds of Halaven, the liver mets are responding favorably!!! They are smaller and no new liver mets!! Thank goodness!! It's been so long since I had any good news. So far, since 2010, the only treatments I've responded to are femara, taxol & now Halaven. Scary, risky & weird, if you ask me. Consider myself lucky to be alive to tell about it!
Now if the back pain/spasms can only be figured out. Going on 3 weeks of pain. Little better, but not much - even hurts to drive. Had a MRI of whole spine, although every vertebrae has mets, no worse than the MRI in January. Having bone scan next week just to be sure no new mets in rib/scapula area. Otherwise, trying titrating dose of steroids to see if the inflammation will calm down. I still think it's the Halaven - a side effect. My theory is the chemo makes the muscles so sensitive that the least little thing sets them off, because goodness knows, I didn't do anything strenuous! Anyone else experiencing this? I know we are all different & my back has been a sensitive spot for years.
Anyway, it's nice to have some weight off my shoulders, for now. It's been such a long time! Although I don't minimize the support friends give me and the hand they often extend, bottom line, it's hard doing this when you are dealing with it alone, on a daily basis. So glad you ladies & these boards are here!! Thank you.
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That's great news! I have my first scan after 4 cycles of Halaven (I start Cycle 4 on Thursday) on April 9. The lymph node under my arm is definitely smaller so also hoping for good news.
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Syrmom- glad to hear Havalen is working for you. I have heard so many positive results being on this chemo before I began. I am now on my 4th cycle and was told all of my tumors have shrunk according to the scan results. I am thankful this chemo works with little side effects. I pray we have a long run with Havalen and it kills cancer completely.
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nred, I'm sure you will get good news with your scan, based on the response you can already feel.
Livebyfaith, yes, I agree - would so appreciate a long run with this & would love to hear no trace of mets in the liver! I know it's a lot to hope for, but I've read it on these boards before, so why not!!
I'm having some BLE edema, seems more so on week off, probably cause no decadron on week off. I'm liking the 2 weeks on/1 off, so much better. Also, anyone else having spasms anywhere? I also like having my appetite back!! Yes! We can do this!
Just noticed you two started Halaven at the same time. So, pls, update me, what, if any, side effects are you dealing with? I remember mention of increased neuropathy (Halaven famous for) & constipation (I have to watch that real close, but Linzess works wonders). On week off, no issue with C.
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Syrmom and livebyfaith,
I had some constipation at the beginning. Both the doctor and infusion nurse thought the culprit more likely to be the premeds than the eribulin itself. They adjusted these (I also get the lowest possible dose of decadron) and by also being proactive with Colace and Smooth Move tea (I start these the day before the infusion and take day of and after), things are going much better. My first infusion nurse also gave me her "three w's" --water, walking and washing--and these have also helped.
I have had only minimal side effects so far (begin Cycle 4 this Thursday). My blood counts took a hit the first couple of doses, but seem to have bounced back--on the low end of normal, but still normal. I sleep a bit more the two days after the infusion, but am not fatigued during the day. In fact this am I ran 7 miles. My hair thinned quite a bit the first two cycles, but this has also slowed (still losing strands of hair, though).
Really hoping for a long run with this drug.
Nancy
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Syrmom & Nred,
I start my second dose of cycle 4 tomorrow. The side effects I deal with are neuropathy, hair and weight loss. Nred, my blood count took a hit as well. My onc has me on neupogen shots.
Syrmom, I do get spasms on the left side of my jaw with a jolt of pain every so often. I didn't discuss it with my doctor because I didn't associate it with the cancer. But since you mentioned it and when I think about it, I didn't have this spasm until I started on Havalen. I guess it is our bodies response from all of the overload. Honestly, I will keep dealing with it if the chemo continues to kill off this cancer. Although my left hand is taking a real beating from the neuropathy, lol.
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Liv4byfaith .. when I started taxol (had an 11 month run on it), I started icing my hands /feet with frozen peas (also mouth to avoid mouth sores, crushed ice, though, not peas! lol). Also began Vit B complex (told B6 important but not more than 100 mg a day) and L-Glutamine,30 gm, powder mixed in liquid more effective. I'm not a prescriber, but learned all of this from the boards. If I hadn't gotten lazy at one point with the L-Glutamine, I may have avoided neuropathy all together. I have some, but am back on this regime, faithfully, & it works for me!! I'll do anything to keep it at bay and keep this Halaven going as it's showing signs of working!! First chemo since August 2015 - I blew through 2 others!! I, personally, checked all these supplements out with an oncologist who also does Complimentary stuff & has special education in it to be sure it was safe for me & wouldn't fight the chemo process - a MD we can consult where I get my treatment. Many onc's have no clue.
The spasms are trickier, but I feel in my case (I'm so sensitive) chemo defin. affects my muscles & we all know all soft tissues. First thing I was checked out for was low calcium/magnesium as that can effect muscles and other electrolyes; if you are having issues with weight loss, etc. your labs might reflect this. Because my back recently took a huge hit with pain, in the last week I've had my usual CT chest/pelvis (routine for effectiveness of chemo), MRI of whole spine (known mets throughout, looking for change) & bone scan. Waiting for bone scan results now, but everything else about the same. So I'm on anti spasmotic & titrating doses of decadon to reduce inflammation & allowing me to take ibruprofen as my platelets are o.k. Hopefully, this will calm things down. This is week 4, I'm better, thank goodness, but at one point couldn't even dress myself! Also, I try to hydrate as much as I can, especially after chemo. You could even ask them for some IV fluid after your Halaven push to help you out.
I will also get swelling of my lower extremities - usually worse towards end of week off; then out of the blue, it will all go away, usually over 2 days after I start next dose - real weird (void it all out, usually at night, unfortunately) . I believe it's called capillary leakage of the chemo; happened to me on Taxol as well.
I've found my appetite again, after having lost it on doxil and Adria - awful stuff for me. So it's been great to be able to eat again. If you are having constipation issues, this could effect your appetite & I've found Halaven defin. has this effect on me, so have to keep on it, closely. I actually read the Halaven leaves the body via stool, so maybe that makes it harder on the intestines, don't know.
Hope this helps some ... hang in there .... also, lots of rest to help build yourself back up.
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Syrmom, thank you for sharing, it definitely helps. I will try the B vit and L-Glutamine combination to see if it makes a difference. Have a beautiful day of peace and lots of rest.
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Hello All - my first time on this board as my scan showed progression to liver and bone on Adriamycin (I'm relieved yet sad that I blew through Adriamycin in 10 weeks) so apparently this is the next one in line...I like what I'm reading on this page and hopefully I can join those of you who have had good luck with this. My Onc is giving me a 3 week break - again, I'm relieved to have some time off, but all the what if's in my head with progression are making me crazy...I'm also getting a liver biopsy next Friday the 27th. My Onc said I'm still doing OK, but we are starting to 'enter the danger zone' with the liver and "need" to have the Eribulin work. I wish there was a way I could "make" it work!
I see where some of you discuss Glutamine as opposed to B-12 for neuropathy - any thoughts on that from anyone?
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benjnate--I don't know for sure if L-Glutamine is the reason I don't have neuropathy. I took it initially when I had ACT in 2011-2012 and never had any problems with neuropathy. I also took it with Xeloda last year and now with Halaven and again no neuropathy at all. Since I can't go back and do it all over again without taking L-Glutamine, it's hard to tell if that's the reason why I never got neuropathy but my oncologist said a lot of their patients are on it to deal with chemo side effects and it's an easy enough supplement to take. I use a heaping tsp of the powder mixed with a class of water twice a day. If you google "l-glutamine for chemo side effects" you'll get a bunch of articles to read on it. The other things it's supposed to help with is certain side effects of the GI system like mouth sores and diarrhea. I'm very susceptible to mouth sores and I haven't had that problem with any of the chemos I've done. At this point, L-Glutamine is like a security blanket for me because overall I've done very well with not having much in the way of troublesome chemo side effects. I would say it's worth a try because I don't think there's a downside to taking it.
I also just found out the Halaven is working for me. I had a CT scan on Monday that showed my liver tumors decreasing or remaining stable. My tumor markers dropped from 1071 in February to 416 now and from my doctor's reading of the scan, my bones are healing. I'm also feeling much better (I had been having bad back pain) so things are looking up. And this is all just after a little over a month on Halaven.
SyrMom--I also had recent swelling of my lower legs and my doctor also said it was a side effect of the Halaven and put me on a diuretic which worked. Unfortunately, despite taking it early in the day, it worked overnight but it is good not to have my legs feeling so heavy.
Here's hoping we all get a long side effect-free run on Halaven!
Pat
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Laura, I take the L-Glutamine & a B complex which has the B6 - was told no more than 100 mg of B6 a day cause that can actually cause symptoms of neuropathy.
Gemstategir - Wow!!! So encouraging & what a drop in markers!! Fabulous! I hope it works on my poor bones cause that's a real QOL issue with pain & I don't really want radiation cause of the drop in hemoglobin it causes that may cause me not to be able to have the Halaven. So, will see. Have a RO consult that will happen & to discuss. In 2 weeks my markers dropped 10 points - now that's not huge, BUT, for me they had been steadily going up since Aug. and 2 weeks prior went up again by a few points, then, down 10! I'll take it! At least heading in the right direction.
The edema can get quite annoying & because I have low BP I don't tolerate water pills, so just wait for it to go away. Often worse on the week off.
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Hey, ladies, had my first Halaven today, so I'm joining this thread. Have read quite a few and appreciate the heads up on things.
I got (and still have) leg swelling on Abraxane (the chemo before Doxil before Havalen . . . . . ) which hasn't completely resolved, and my onc isn't willing to admit it was the chemo. I've been checked for blood clots in my legs and there aren't any.
I got neuropathy in spades with the Abraxane and am going to be watching closely for worsening, which sounds common.
My hair had grown out to about 1/2" after the Abraxane, so here it goes again. Maybe third time is the charm.
I just recently started MiraLAX for constipation, but am ALSO eating 10 prunes and drinking warm prune juice. Whatever the case, I've seen a great deal of improvement. I'm going to next ratchet down on the prunes and juice and see if I can do just as well with MiraLAX alone.
Anyway, thanks for being here!
xoxoxoxox
Calico
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Hang in there, Calico - think you will find this doable! I'd advise keeping ahead of the constipation - it is a known side effect as far as I can tell - I read Halaven is actually excreted by the body through stool. I also find I get feeling very dry, no matter how hard I try to hydrate - just another consideration. Appetite sprang back, which I'm so enjoying. The edema, oh, yes. Comes & goes & I find actually sometimes worse on week off. Neuropathy can be a problem - I continue to ice feet/hands/mouth (to prevent mouth sores). I also take a BComplex & L- Glutamine powder. Have neuropathy from 11 months on taxol & I believe had I been more consistent with the L-Glutamine I would have avoided much of it. Live & learn. I'm exploring the possibility of acupuncture for the feet, but carefully because of the history of hand/foot syndrome, etc. Can't hurt to look into it as I want to stay on Halaven as long as it's having a positive effect!
I'm 2 weeks on/1off & loving that as well.
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Thank you, SyrMom! Once again, I'm just behind you on the path. You and the other ladies are so extremely helpful. This would be a far lonelier journey without you.
xoxoxoxoox
Calico
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Anyone having issues on Halaven with low counts? I have completed two cycles ( 4 treatments). Last treatment was March 13 (last week was off week) and today my ANC was around 250. I am getting 3 shots of neupogen before treatment Friday.
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grahaad1 - I've read Halaven does create that issue. I'm low, but holding for now - course, it's all cumulative, so who knows, bottom can drop at any time. I try to eat decent (including yunk food and goodies) & get as much rest as I can, think for me rest is real important to allow body to recover. Let us know how the neupogen affects you - is that the one that causes bone/body pain? If so, I've read taking claritan before and for few days helps with that. Hang in there!
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