Halaven - Day 1
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GemStateGirl - hooray on the tumor marker drop, that's wonderful! No swelling for me yet, but I'm going to watch for it. I've been wearing my lymphedema sleeve faithfully and I hate that thing - but I gotta do it. I've been taking vitamin B-6 every morning which has helped me (I guess) with neuropathy since I never got it on Taxol.
SyrMom - I haven't been diagnosed with neutropenia yet, but my numbers have been dropping quicker than before and I fear I may be getting that shot someday. I read somewhere just today (on FB?) that protein is to help with low counts so I'm going to try a little more protein. Who really knows.
Question for you all: either the first or second night after my first dose of Halaven last week, I had the worst heart palpitations ever while sleeping. Painful. I sat up and then went back to sleep on my back with my pillows propped up. They did go away as soon as I sat up, but palpitations is one of those s/e in the literature that says to "contact your Onc ASAP if this occurs". I didn't tell my Onc as I just want this stuff to work so bad, but I'm getting kind of scared of that happening again this week...did anyone ever have this happen to them? Please share, thanks!
L.
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benjnate--I haven't had any heart palpitations on Halaven. I think I would tell my doctor. Maybe it will be end up to be something to watch but not a reason to stop treatment or maybe they can reduce the dosage. I would be like you and worried about it happening again and it sounds like something anxiety could bring on. My experience with things that I kept to myself was that I worried unnecessarily--either because it turned out to be nothing or there turned out to be an easy way to deal with it. I know that my mind (i.e. worrying) often creates symptoms or makes symptoms I have worse.
I also wanted to tell you that I have lymphedema and haven't had any trouble with swelling in my arms--just my lower legs. If I remember correctly the lower leg swelling is a specific side effect although one that is less likely.
I hope the incident you had with the palpitations ends up being a solitary one.
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benjnate--you may have already seen the information below. I copied it from rxlist.com's description of Halaven's side effects. I bolded the sentence about low levels of potassium or magnesium being the cause of changes in heart rhythm. I did develop low levels of potassium from taking Halaven and now take a daily supplement to keep it in normal ranges. I really hope you discuss this with your doctor. Hoping this is an easy fix for you.
Eribulin may cause a condition that affects the heart rhythm (QT prolongation). QT prolongation can infrequently result in serious (rarely fatal) fast/irregular heartbeat and other symptoms (such as severe dizziness, fainting) that need medical attention right away.
The risk of QT prolongation may be increased if you have certain medical conditions or are taking other drugs that may cause QT prolongation. Before using eribulin, tell your doctor or pharmacist of all the drugs you take and if you have any of the following conditions: certain heart problems (heart failure, slow heartbeat, QT prolongation in the EKG), family history of certain heart problems (QT prolongation in the EKG, sudden cardiac death).
Low levels of potassium or magnesium in the blood may also increase your risk of QT prolongation. This risk may increase if you use certain drugs (such as diuretics/"water pills") or if you have conditions such as severe sweating, diarrhea, or vomiting. Talk to your doctor about using eribulin safely.
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Gemstate - wow, impressive drop with the TM's - happy for you!
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Thanks, SyrMom--I have my fingers crossed that things continue to go well on Halaven for awhile. I had a good early response to Xeloda and then at 4 months it all went south. I know I will be nervous about my next scan (probably late May or June) but I am getting a little more used to this roller coaster ride we're all on with this disease. Hope you're doing better these days. How's the neutropenia?
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I just got back from my Halaven infusion. I asked the pharmacist about taking Zofran with it and he said the main concern is that both drugs have a slight possibility of causing heart irregularities so if there's any concern about heart issues, they prescribe a different anti-nausea medication.
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I went today for my Halaven but my counts were at .06 after only 1 treatment. Apparently that changes everything as I will now only be able to have Halaven only ever yother week now and at a lesser dose, according to the nurse. I'm just so down. Gem State Girl, thanks for all of the Zofran information. I didn't even get a chance to ask but the information on these boards seem very valid. I'm going to bed now and will hopefully wake up in a better mood and able to deal with things. I think the fact that my youngest is graduating high school and leaving and me moving 2 hrs away is starting to mess with my emotions too. Sorry bummer post.
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((((Benjnate)))), you've got a lot on your plate. The new Halaven regimen may very well be just as effective, so you haven't lost out on it. Seeing a fledgling moving on can't be easy. Hope you get a good sleep and feel better tomorrow.
xoxoxoxoxox
Calico
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Laura - wow, what a drop! Were you feeling it? I feel like awful when mine drop - no energy & it's been happening more frequently. Are they recommending the injections such as neulasta or neupogen in addition to changing your dose/frequency? Anyone else here had the injections? I understand taking Claritin the day before and for several days helps with the side effects. I believe I will be starting them soon, either after the next round or after scans in May.
The change in dose/frequency is actually a protocol for Halaven - I read it on their website. So, while I understand why this is upsetting & I know I would be upset too, it doesn't mean it still won't be effective for you. This makes it safer and perhaps more manageable. Who knows, maybe it's a sign of not only knocking the crap out of your immune system, but also knocking the crap out of the "beast."
So hang in there - I know it's scary - stuff like this happens to me all the time. However, there could still be a silver lining here.
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I've been in the hospital off on for the 3 mths...it's either fever of 103.5 or abdominal pain from my colostomy...And the fear that something may happen when I"m home alone...They talked alot to me this time in the hospital about assisting living...I just got this 5th wheel and love living here...I have a caretaker a couple hrs during the week..but not on weekends...I think I'm going down hill...I can hardly eat...walking is difficult...I NEVER FELT LIKE THIS IN MY LIFE...IT FUCKING SUCKS...I WAN'T MY LIFE BACK NOW!!!!!!!!!!!!!!!! Just give me some strength God!!
I had my Halaven fusion last tuesday...was fine all week..and then Sunday boom...hospitalized with sever abdominal pain...
I don't know what to do...being that I"m all alone...Is it my time to call it quits....is that what God is trying to tell me....
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Freebird53,
I am so sorry for what you are going through and it does suck not to have anyone especially at a time like this. If u ever need to talk or just vent you could on me I am here. I hope things get better and turn around for you. Life really does suck especially for us. This disease is a constant battle and you don't know what will happen tomorrow. I tried to give up several times but I continue to fight I am not ready yet there is still so much I have not did. I am sorry and I really hope things get better but we are heat for you... Hugs stella
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Freebird, if sounds like your health care team understands how hard it is for you to deal with this alone. Any affordable plan to get you some companionship sounds like a winner.
I have a friend who lives alone and started treatment in Sept. '13. Her oncologist was very concerned about her living alone and encouraged her to move in with her daughter. For my friend, the better solution was to hire a live-in companion. She could afford it, and my friend felt much safer/more healthful mentally.
If you can, seems like the best solution would be to try one of these approaches before stopping treatment.
xoxxoxoxoxoxox
Calico
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Hello all - thanks for the kind words when I was down last week. And just for the record, my counts were .6 not .06 - sheesh, big difference! I slept a lot this past week, ate really well and drank lots of water. We'll see how tomorrow goes. I'm starting to like the idea of having Halavan only every other week, at least until everything settles down in my life and my nerves get back in order.
Freebird, I'm so sorry for what you're going through. I have my 18 yr old living with me but that's almost like living alone as he is so busy and he is leaving me literally in a few weeks, so I get it. Quick story: a few years ago, I was following a mbc patient on her blog - her name had the word Peach in it - and she lived alone. Finally she went into assisted living and was upset about it. She didn't write for awhile, but when she did, she was doing so well. She showed pics of her 'room' and the friends she had made, the support system she had their, and she seemed much more at peace. She passed away eventually, but she had a real quality of life at the end, with friends and laughter, lots of hugs and hand holding which she enjoyed. I always thought I would have no problem doing that if I had to, after following her blog. Keep us posted on how you're doing, I think of you a lot.
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I have been on Halaven since late Jan and I will say I have hated it almost as much as any chemo I have been on-and that's been 10 drugs over 4 years. The neuropathy in my hands and feet have made me into an invalid. I am on Lyrica which I think has made it not painful like it had been when I was on Kadcyla. My feet and lower legs are like blocks of wood-I am having balance and falling issues. My hands are useless. I have had to quit work which makes me so sad. It just seems like it went from mild to wild overnight.
I really have no good options left but I also am not willing to live like this. I am taking a coupe of weeks off to see if anything changes. We are talking about maybe 1 week on/1 week off. This has been the first drug in a years time that has stabilized my cancer, my brain scan this week looked pretty good and I actually feel good overall-I just can't walk or do anything useful.
I haven't posted in months and I am sorry I picked you guys to dump on but I was just curious if anybody else was this miserable.
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Sorry Peeps!! I have been busy just enjoying my good news that I got yesterday at the Doc's ....Here it goes...My liver tumors have dissipated...My tumor markers are down from 436 to 200....and my white counts are normal...yea isn't that awesome...I get a break from chemo till after Mother's day...So I'm going to enjoy ...anyone what to take me on there back sit for a ride this weekend...let me know ahead of time...I need time to plan...I sure would like too...to celebrate my GREAT NEWS!!! ItSgOOdTObEmE....!!!!!! Love you all...
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Hi, Lilylady, I've been on a 2 weeks on/1 week off with Halaven. I have swollen legs/ankles/feet with numbness/balance issues, have lost feeling/dexterity/strength in my left arm/hand, and am very breathless. Typing and walking are great challenges. All in all, I'm pretty damn miserable, but I'm not sure how much to blame on Halaven or something else. I had my first brain scan and get the results on Monday.
I think a chemo vacation is a great idea, and getting Halaven every other week is, too. You may see your side effects improve quite a bit. I think it's worth trying and reserving judgment for a few months to see how it goes if you can tolerate it.
In a situation like this, i really hate it that I'm the only person who can answer the question. Isn't there an Oracle someplace we can consult for the imponderable?
xoxoxoxoxoxoxo
Calico
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(((((Freebird)))), that is fabulous!!! With everything you've been through, you sooooooooo deserved some good news!!! YAY!!!!!!!
xoxoxoxoxoo!!!!
Calico
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Freebird,
Great news-enjoy yourself. Always makes my day when I can start out with good feeling from reading a happy post.
Calico Cat-seems like you and I are on the same page. I hate feeling like I am 80 years old. It takes me forever to accomplish the smallest task. I still can't believe how fantastic I felt in Dec to where I am now. It will be 3 weeks off on Tuesday and it hasn't gotten any better. I have put a lot of thought into this and I am going to tell my onc I am stopping chemo til thei rights itself then I need an additional month after whenever that is to get things in order. Things I should have taken care of already. it is a huge risk but I feel like this might be my last good summer and I am not spending it like this.
We have been e-mailing over the last weeks and we are each doing our own research on where we can go from here-I am willing to listen to what he will say but I am at peace with the decision I have reached. I do have an apt to see an accupuncture person and I have started some supplements but I find this whole thing pretty unbearable. I am spoiled because I have really sailed thru most chemos with little side effects. This one has me mad at the world!!
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Hi, Lilylady, and so glad you have formulated a plan that feels right to you. Your prioirities are THE No. 1 priority..
xoxoxoxoxox
Calico
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Lilylady I was on Halaven for 13 months. I was okay for the first six months and then the nueropathy just became overwhelming in what seemed like overnight. I was afraid to walk down the street and could barely climb a flight of stairs. So after six months of 2 weeks on and one week off, the dose was reduced to one week on and one week off, at a slightly lower dose. The good news was that the drug still worked and the neuropathy did improve somewhat. I was on the drug for another five months at the lower dose. At least I wasn't afraid to walk down the street and my hands were back to almost normal. Just food for thought.
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pearlady--What happened to your hair over the course of the 13 months you were on Halaven? I've been on it for 3 months now and it's thinned quite a bit on top and I keep wondering if I should just shave it off.
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GemStateGal I was on Abraxane previous to Halaven and lost all of my hair including eyebrows and eyelashes. I was then on Gemzar for two months (unfortunately it didn't work). During those two months my hair started to grow back very nicely. On Halaven my hair continued to grow back, but very slowly and it was thin. I did not shave it since I was so happy to have hair, even though I continued to wear my wigs to work. I'm happy that I didn't shave it because as soon as I switched treatments my hair seemed to get thicker very quickly and I am now able to wear my hair, although it is still quite short. The good news is that my eyebrows and eyelashes grew back while on Halaven.
Good luck to you on Halaven. It was a great drug for me, although the neuropathy was challenging. Other than that I felt great and had lots of energy.0 -
pearlady--thanks for your response. I think I will hang on to what hair I have. At least I feel comfortable sitting around the house without a wig or scarf. I was also glad to hear your eyebrows and eyelashes grew back while you were still on Halaven. I have an oncologist appt today and was going to ask if I could get my eyebrows tattooed. I haven't lost all of them but they seem to be going fast these days. Of all the hair loss, I missed my eyebrows the most when I did ACT and even though they grew back, those weeks without them were hard.
I'm just starting to deal with some neuropathy on Halaven--mostly numb fingertips, arms that fall asleep easily, and some numbness in my lower legs. My feet don't seem too bad. I got sloppy for awhile and stopped taking l-glutamine regularly. Not sure if that anything to do with it but I'm back to taking it twice a day just in case and it does seem to have stabilized.
I'm hoping I do well on Halaven since Faslodex and Xeloda didn't work for long. My first scan at two months showed a lot of regression in my liver but it's always hard to tell what is going on with the bones on a CT scan. I do know I feel so much better since starting Halaven. I have to ask today when my next scan will be.
I think I've seen you post on the Ibrance threads. If so, I hope you do well on it. I'm hoping that may be an option for me down the road so I've been following those threads.
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GemStateGirl I pray that you do well on the Halaven. I did very well and when I switched to Ibrance it was still working, but I really wanted a change due to the nueropathy. I didn't have a problem with my hands, but really difficult with my feet. Part of my problem is that I had a very bad foot injury prior to Halaven and my right foot was much worse with the nueropathy. But when I had the Halaven reduced to evey other week and a lower dose, the neuropathy did stabilize and the drug still worked. I should also try the l-Glutamine. About the eyebrows, I thought about having them tatooed, but didn't. Someone recommended Elizabath Arden Brow Shaper and Eyeliner. It really did a great job and looked very natural.
I'm sure that the Ibrance would be a great option for you. So far not difficult and the nueropathy is slowly getting better. You are ER/PR+ and Her2nu- which is really who the testing was for. I am so thankful that my insurance approved since I am triple positive. My onc believes very strongly in Ibrance and is trying to get for two patients who are ER/PR- and Her2nu+. Hopefully all that wiill be approved sooner rather than later. They are actually doing trials with Ibrance in combo with several other drugs. Hopefully it will be available for more types of breast cancer in the near future.
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Pearlady,
We discussed what you were doing-lowering the dose and going every other week but I decided it was just too toxic so we stopped it. I am on an extended chemo break til I get some feeling back in my hands, feet and legs. I am not going to spend my summer sitting in a chair because of falling. I am using a cane or walker. I have actually been off of it for 6 weeks and little or no improvement. I know the risk of no treatment but am willing to risk it. I will see my onc again in a month. Not a whole lot left for options. He has suggested we go back to Kadcyla which is the only drug I had ever quit on in 4 years. Same thing -severe neuropathy. I was not on Lyrica at the time so the pain part of it made me nuts. What I have now is very annoying but not really painful.
Thanks for all the info you provide.
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Hello All - Just checking in. I get Halavan again tomorrow after getting it at a reduced dose. My liver has been telling me the past few days that it's time for a real dose. No neuropathy yet but am reading the comments from others and am hoping that I will get it towards end of summer and not during. If only we could tell our bodies what to do! Wishing everyone a great week.
Laura
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Lilylady it sounds as if you are comfortable with your decision. I can certainly understand your decision. I am praying for you.
It did take a while for the nueropathy to get better. I went off of Halaven towards the end of February and it has gotten signifigantly better, but very slowly. I don't think my right foot will every be the same due to a serious injury i had before Halaven, but at least I'm not afraid to walk off the curb and can now get up the subway steps. As I mentioned in a previous post, the deep tissue massage, called rolfing, has honestly been the best thing. Its a long process as she can only do so much in an hour and it is expensive, but I do notice a small difference after each treatment. I also go for acupuncture, but that hasn't been as effective, but its covered by insurance, so I am sticking with it. I am only sorry I didn't start the deep tissue massage while on Halaven.
Praying for you.
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Hi, I am starting Halaven this week or next after Gemzar stopped working. Progression in lung lining. Liver and Sternum & nodes still clear for now. I will read further back to see any tips, SE, etc. I have to say though just reading a page pack, I am getting very nervous!!
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Well...Just like everyone else...I read every post ...but then when it's time to respond...My chemo brain doesn't allow me to remember all your names...but just remember I respect and love all of you and your comments are inspirational...
I have been off treatment for 3 weeks since my last great news I posted a ways back...Liesions have dispated on my liver...tm down from 436 to 200 and blood cts pretty normal...
So I go Thursday to start Havalon again..along with Felex....and my bone booster...I have to say I have enjoyed being NORMAL>>>> ha what ever that is...but in this disease...that's what I call it...I have been able to finish my landscaping and be around my grandboys alot more...
Mother's day was beautiful..spending it with my extended family and my daughter...
I have a bigger surprise happening today..that my daughter doesn't know yet my I am flying in her Dad for 2 weeks ...This is a long story...but something that we both need...We have been very good friends since we split 1998...And have become closer this last couple years just via phone...anyhow...she has NO idea he's coming today...so we are surprising her at work...around 1pm Idaho time...I love doing surprises..especially for my kids...
So Update later...Love you all Carla
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That's wonderful, Freebird, sooooooooooooooooo happy for you!!!
xoxoxoxoxoxoxoxoxo
Calico
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