Halaven - Day 1
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I will start Halaven on July 30th, 2019. Xeloda(capecitabine) was a total bust: I'm allergic and was sent to the ER burn unit for Stephens/Johnson syndrome, blisters anywhere I was exposed to sun (extreme photosensitivity), on my lips, face, neck, shoulders, arms, legs, feet. Alot of intestinal distress, and Lomotil finally shut that down.
So, on to Halaven and I'm closely reading all your posts. I already suffer from chemo induced peripheral neuropathy and the Perjeta seems to be increasing that SE lately.
Thanks so much for this thread.
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Miriam, welcome!
So I spent the 4th of July weekend playing golf in 85 degree heat. I made it all four days. By the third day I even remembered to keep my head down. But this definitely falls into the "not dead yet" category.
Followed on Monday by port placement. I asked for it -- I am tired of the bruising from ivs. Has anyone noticed different 'hit' of SEs with a port rather than iv? I feel like today's infusion is hitting me a little harder. Maybe it's my imagination. Maybe it's the residual anesthesia.
Maybe it's the mild depression. My tumor markers are rising again. Sigh. I've just made many promises for the last two weeks of September. Hoping Halavan can last that long. . .
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I’m up at 3 am and can’t sleep. Hate the steroids.
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Pajim I sure hope anything you’re feeling is residual. I’ve never had chemo without a port but I can feel it as soon as it’s injected. Different than a drip. A weird feeling in the pit of my stomach. If I don’t eat I get a little woozy feeling. Remember it goes right to the center of your body without traveling through your arm first so it probably hits faster.
Depression hits all of us at some point and I hope your tumor markers are just a flare of some kind. September isn’t that far away and I know you’ll have fun. I keep having to change my plans because of other people’s issues. 🙄 None of them related to my treatment!
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Folks, I'm reading through all your posts and I can only count about 6 of you still here. For those of you that remain, Halaven (eribulin) seems to be working well, in spite of its SE's.
Is this about right?
Paula, who started this thread, along with countless others, only were able to buy about 6-12 months with Halaven. They moved on, but haven't been posting here in years and sadly, are now in the memorium thread.
Is it worth it?
Sorry to be such a wet blanket, but I've just been hospitalized due to Xeloda. The previous drug, Doxil, only gave me a year but I had severe blistering from its "burning" its way from the inside out. I just can't help but wonder about what the quality of life would be for me if I start this on 7/30/19. I have my son's wedding coming up in late November, so I want to make it for that.
Apart from that, I'm uncertain as to how much of this "life support" I'm willing to endure.
Miriam
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Welcome, Miriam, I'm sorry you're here but hope you find good information on this thread. I was on Ibrance/Femara for 18 months before I burned through taxol/gemzar and ended up on Halaven. I naively thought going in I could get a solid year out of it, but the stats frankly don't support that. That said, many women are on it for months, and enjoy a pretty good QOL. Like Pajim, out there golfing for three days. For me personally, it's easier than taxol/gemzar. The biggest SE's are lack of appetite and fatigue. So, yes, worth it for me.
Pajim, yay for the port. I'm thankful for it every time they access it. My poor veins were just shot from the tx. Not sure about the 'hit', but your body was probably vulnerable from the minor surgery.
Wandering, the oncology nurse and I were just talking about how different hospitals have different pre-med protocols. Can you ask to not get the steroids? I do just fine with only zofran. Sorry for decadron yips.
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Wandering,
Are steroids a normal pre-med for Halaven?
I was on them for Doxil, and also hated them.
When they (very briefly) put me on Xeloda (Capecitabine), I wasn't steroided. At all. Liked that but then the Xeloda threw me in the hospital.
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Thanks, Jaylea;
I needed to hear that. I'm prob tired today but also a bit nervous that the Oncologist just rX'd what I think was too high a dose of Xeloda (3,500 mg/day for a 5'6", 155-lb body, it's based on surface area).
I have had such a good run for a long time with my Oncologists and Fox Chase Cancer Ctr. but wonder if I need an integrative Onc who would consider my particular situation more carefully (Doxil also gave me trouble, and they adjust down the dose once you've got 1-inch holes in your skin, LOL).
I'm tempted to tell them, "no Halaven, just Herceptin & Perjeta" until I'm no longer comfortable.
Pajim, I've had the same port since November 2010. It's been a blessing. While my muscle tone on my chest has diminished due to not working out for at least 5-6 years and becoming rather sedentary, it's been very tolerable. Without the muscle tone, you can "see" it sometimes as it is slightly elevated, particularly after infusion. Also, watch your tiredness levels; walk if you can. Walking is easy, and has so many good SE's. Today it's raining cats & dogs in SE Pennsylvania, but we walked the dog early this morning and that often helps me. And yet, I was discouraged this morning. You girls may be the antidote for today. Thank you!
Below are those I'm living for here.
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Miriam, can you delay starting the Halaven if you’re on herceptin and perjeta until you really need it? It’s difficult to know how you’ll react to it. I reacted badly to doxil. Is there nothing else your doctor can consider?
Jaylea, next on my list with my doctor will be to discontinue the steroids. Each cycle seems to be worse than the last and I don’t really understand that but I’ve never had steroids before. I’m still tired today and yesterday was horrible dealing with an attorney, the cable guy and the vet. I’m just looking forward to sleeping in tomorrow and some time to myself! I think it would be tolerable for a longer time if I could even out the ups and downs.
My bloodwork continues to be good without the csf shots so maybe they’ll be even better without the steroids. 😆 Less is more!
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ok where do I start? So much has been going on the past few weeks.. thank you Jaylea and Pajim and those who took the time to chime in and comfort me .. I knew I can count on my BC sisters. I continue to have inexplicable side effects during my off week .. day 1 and 8 of cycle two went relatively fine aside from the usual fatigue, sleeplessness, leg and feet swelling and continued hair thinning.. in addition to one weird episode of horrible pain in my upper stomach closer to the diaphragm.. the pain was too much I almost agreed to going to ER but thank goodness my oncologist friend suggested taking a big dose of nexium first and it worked.
Few days before the start of my third cycle I found a good opportunity to go to the beach with my family for a couple of days. The water helped a lot with the swelling it was almost miraculous! Yet I my eyes started hurting and itching and I developed a bad rash on my chest that kept spreading all over my body.. luckily I had cortisone cream which helped take the itching edge off but my scalp kept itching all night and I couldn't get any sleep that night .. DH went out and got some Benadryl and asked my MO to call in for a steroid pack... half of my already thin hair fell out from all the itching but at least now I got some sleep.
The rash kept spreading all over my body .. every few hours to a new spot while the old spots stop itching and totally disappear. After 3 days on the steroids the rash still persists the same way .. bendaryl seems to be faster in stopping the itching than steroids. My husband who's an eye doctor feared this may lead to Steven Jonson Syndrome and looked it up and found that Halaven has been linked to cases of SJS and TEN after it has been approved!! What a nightmare this would be! When I read yesterday that Miriam had SJS on xeloda I freaked out.
Today I saw my MO who seemed concerned too and said if the rash comes every time during my off week that can mean that I am developing antibodies against the medication and every time could be a little worse so she favored moving on to something different already even though tumor marker is going down and liver functions are slightly improving finally!!
She's suggesting Navelbine .. now I would be officially done with the real treatment options! I tried to buy some time and asked for one more week off to assess and hopefully the rash would improve with some more antihistamines and maybe try again with Halaven but she'll have to add a pack of steroids with every cycle and that comes with its own set of side effects.
I don't know what to do .. I don't want to jump ship so early.. I was really hoping for a run on this one.
Any input is welcome
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My wife had problems with Halaven; though different than yours. Her MO dropped the dosage from 100% to 80% and that did the trick.
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Wandering - my Onc PA agreed to a break in which we just do Herceptin & Perjeta for a cycle. But I think he will push to get me on Halaven.
Mike - My Oncs think maximum dose, even though there is data that suggests other ways to "skin this cat". Not sure why they believe in pummeling us.
Nouzay - I'm sorry you're going through this. That's terribly wrong. I like what Mike's wife's Onc did, but it bothers me that it only occurs only after she presented problems. Mike, do you mind telling what the dose is that she's presently on that is only 80%? And what were her adverse SE's that prompted her MO to reduce it down?
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She's on 80% and has been for some time. Aside from the SE's her oncologist was concerned that her nephropathy was slowly moving up her legs to her knees. If it went too far she'd be wheelchair bound for the rest of her life. It seemed the 80% all but eliminated the cancer from her body. However, she was given a 3 month break from chemo and it was then that it went to her brain, the dura, (brain lining).
She underwent 11 sessions of Whole Brain Radiation (WBR) which would hold off the cancer for a time. Their is a Blood Brain Barrier (BBB) that acts like a filter and keeps out most everything except cancer and alcohol among other things. Normally it would keep out the Halaven. However, if a patient underwent WBR, it loosens up the BBB and Halaven CAN enter the brain. The brain is a small confined area and cancer can be totally eradicated from it - that's IF the Halaven is still working.
Wife just had a PET scan and we'll get the news good or bad Wednesday. Bad news, especially involving the brain, can be very bad.
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NouzayO, what a crap storm you've been through. Especially frustrating that it's the SE's rather than the tx being ineffective that's causing the potential change in treatment. I'd be inclined to modify the Halaven dosage and pre-meds - even for one cycle - to see if I could wring more time out of it.
Miriam, beautiful family indeed!
Mike, sending up prayers for your wife, you, and family that WBR did its good work.
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So much to catch up on! Miriam, I'm sorry Xeloda sent you into the hospital but I have to say that 3,500 a day is a LOT. I travel[ed] a lot so I was on 2500 a day.
Same with Halaven. I started with the full dose but after the first cycle we lowered the dose by 20% and life is a lot better. I had suggested not starting at the top but agreed to. Cycle 1 was a disaster for a lot of reasons and MO had no trouble saying "never mind". He definitely doesn't believe in pummeling. For Xeloda there is no evidence that a bigger dose works better. If the idea is to keep us on the treatments LONGER, they need to be easy enough to do that.
But you are entitled to say "no" for a while if you wish. It's your body, your decision. If you want to do H&P until you feel better, why not? I would have said so long as you are on something. . .
Nouzay, you've been through the ringer! That weird chest pain? I had it once. It hurt like a gall bladder attack but I decided it was reflux. 11 doctors on my office floor but that noon not a single one of them in the place. LOL. I consulted one of the cardiologists who didn't think it was a heart problem but made me promise to go to the ER if it happened again. Never did.
The rash -- you're allergic to something. Hmmm. Try taking benadryl or claritin as a pre-med? If you're only getting the reaction on your week off it seems odd but maybe tamping things down right away would help.
As for pre-meds, someone asked. I take 4mg dex. I could take 2mg (or 8!) or none. If I took none they would offer Zofran. The steroids are to keep nausea, etc. away. So I certainly don't HAVE to take them. I get chemo in the morning and I like the boost. I'm prepared to pay the one-night-disturbed-sleep price.
Mike, I hope the PET results are good!
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Jaylea, Miriam, Pajim and Mike .. thank you guys fir chiming in and for the support!
So I forgot to mention that I did ask my MO for a dose reduction but she said that’s not going to fix things .. the dose reduction only works if the side effects are among the expected SEs in the pamphlet but in this case rash on the week off is not what they consider “expected” .. she’s suspecting that my body is creating antibodies for Halaven and that means every month it’s just going to get worse. She reluctantly agreed to give it one more month if my rash gets under control and if I take pre meds, cortisone and antihistamines during the month though.
I must say the two antihistamine prescription medications are working now and the rash is definitely improving so I’m hoping that’s a good sign!! I am leaning towards sticking with it for another month then I get my scans anyways so a decision could be clearer.. I just really really hope I don’t get Steven Johnson’s Syndrome by then.
Mike, praying for comforting news for you and your wife this Wednesday..hoping Halaven crossed the BB and kicked some cancer butt.
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NouzayO, sorry to say this but I need more info on your rash. On Tuesday I started a rash on my chest. It's slowly spreading. Doesn't itch unless I touch it. Then mildly itchy. It consists of red bumps that you can actually feel. t started on the center of my chest and is heading left. Nothing on the radiated right side.
Does this sound familiar? Or not the same at all? I tried a little steroid cream on part of it but it doesn't seem to have any effect.
What I'm really worried about is this isn't a Halaven SE at all but that my port is infected. That would be seriously bad news. I asked my ID doc who said "lets see what it looks like tomorrow". What I was asking him was whether I need to call MO now or can wait until regularly scheduled visit on Wednesday.
Pam
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Pajim and Nouzay, hoping you both get symptom relief from the rash, and that in Pam's case is unrelated to port. But if not, then what the heck is it?
I calculate that in my 21 day cycle, I get about 4 bad days, 13 ok days, and 4 good days right before the next cycle commences. I'm in the middle of that 4 good day stretch and trying to make the most of it. Celebrated our 33rd wedding anniversary last night, and today heading to my sister's 70th birthday. My oldest brother was part of the NASA moon landing so it was a big thing in our family. It was perfect that it happened to coincide with my sisters 20th birthday, and we've celebrated the two together ever since!
Wishing you all a great weekend. Hugs from JL
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JL, so glad you can have all the celebrations while you are feeling good!
I consulted my ID doc. Definitely a drug rash -- not a problem with the port. [He loves looking at rashes] Which means it's a reaction to the Halaven because I'm not taking anything else.. He told me it could wait until my next appointment [Wednesday]. I don't know what happens then. it's not spreading anymore though it's not getting a lot better either.
I looked at the label. Apparently rash is one of the SEs, but it's a rare one. Nouzay, I hope yours is doing better!!
It's 100 degrees outside so I'm hunkered down in the air-conditioning this weekend.
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Pajim, how’s your rash? Is it better?
Nouzay, is yours continuing to get better with the antihistamines? Are they giving you any other side effects?
Mike, how was your wife’s scan?
Jaylea, how nice that your anniversary happened during your good days! I hope you got an extra one or two with the momentum!
Miriam, are you still holding off on the Halaven
I just saw my MO and he agreed to cut off the steroids and I get a CT scan next month. Not having the nivestym shots has definitely made this treatment more tolerable and should be even better without the steroids. Treatment tomorrow and Disneyland on Friday so I really need a good night of sleep!
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Wife's scan was what the Oncologist called a "mixed bag." Some progression yet some signs of cancer lessening. My wife was without any chemo for over 4 months yet the cancer didn't go completely crazy. She's to be on Halaven for the next 2 months then a PET scan.
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Interesting times. My drug rash cleared up on it's own. BUT. I developed a different kind of rash on the line of the port catheter. Runs from my neck to me breast. Nurse who accessed my port asked what I was allergic to. It does seem like a some kind of contact dermatitis. Rubbed against something that irritated the skin. Except I didn't. Sigh.
Anyway, as of this morning I am on a Medrol pack. That should tamp everything down. May prevent the drug rash from coming back too. One can always hope.
And my TMs continue to rise. I am to have scans in three weeks. They'll probably say " a little worse" than the scans two months ago. If so we'll stick it out until early October. If they're a lot worse I'll be changing treatment. Sigh.
Oh, and did I mention possible radiation to my leg? MRI for that tomorrow so that the ROs can look and see whether they can do anything. It only hurts to sleep.
Have fun at Disney! More fun than where I'm going next week -- Raleigh, N.C. [conference and then to visit my Mom]
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Wandering, I hope your treatment goes off without a hitch today.
Mike, it sounds like you're ok with the mixed results, all things considered. I hope the treatment is tolerable and doing good things.
Pajim, sorry to hear about the ongoing rashes. And if radiation can help with leg pain, bring it on. Enjoy the visit with your mom.
I talked to my MO Monday. I thought we were going to scan after three cycles, but no, it's three months. So I'll be in the barrel in September. In the meantime she's pleased with my labs and overall response, so I'll take that for now.
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You guys get the brunt of my frustration. I'm sitting in the chair awaiting the NP. Because apparently we need to have a pow wow about my MRI results (left leg). That CANNOT be good news. But my lovely infusion nurse doesn't want to say anything.
And an hour later we are still sitting here awaiting the NP. I know Liz doesn't want to give me the Halaven in case we call it off.
ARRRRGGGHHHHH!!!!
Why do I foresee a trip to the orthopedic surgeon and OR in my future?
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My wife is back on the Halaven track after being sidelined with breast cancer to the brain. Halaven had worked so wonderful for her in the past. After some violent seizures and then brain surgery to remove the pressure she had WBR. According to what I've read, and her MO confirmed, Halaven can and does get past the Blood Brain Barrier (BBB). It seems the WBR messes up the BBB and the Halaven can get through.
My wife is back in the hospital. Had to take her to the ER as she was getting weaker and weaker. Her red and white count was way low. We thought it was the combination of Halaven, recent brain surgery and several violent seizures however, we discover it was NOT cancer related but a urinary tract infection. Sometimes you get fixated on cancer so much you forget there's other things out their that can get you. Dr. isn't concerned as it's fixable and they are now going to slow drip all kinds of antibiotics into her.
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Pajim, any progress? I would be frustrated too! I hope it’s news that’s easy to listen to and not a big surprise.
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Mike I hope your wife continues to to do well on the Halaven and it does it’s magic on the brain mets. A trip to the ER can be terrifying but so glad to hear it’s something so easily treated and she responds quickly and is able to rest.
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I was out of state for about 12 days so off all of this stuff; sorry for disappearing.
Wandering, I suggested yesterday to my PA that I start Halaven on 8/20. My husband asked me what the dose was that they will start with (it gets adjusted down if neuropathy is too much for me, and I'm a bit concerned about that, not so much the skin rashes... those are bad, but diarrhea that doesn't stop is worse). I just had my biotherapies yesterday (Herceptin & Perjeta).
I want to ramp up some on L-Glutamine (staves off some neuropathy for some) beforehand and see an Integrative Onc on 8/9 and see if he has any ideas before I jump back in the deep end.
Sorry, Mike. But, good to hear that Halaven will work for her. I was in the ER on 6/19 and they DO know what to do for a lot of problems. Keep us posted.
Pajim, Sorry for the rashes. Infusion nurse can't make claims that will get them sued later is my guess. Mine don't know enough to make too many statements on what's going on. Sometimes, they surprise me, though.
Jaylea, that's good news, I think.
Nouzay, any dose reduction is a good idea to me. But I don't know what they "know". This is no easy deal.
love to you all,
Miriam
(I must be nuts to be showing this photo, but it's me at a Georgian party in May). My niece wanted to make all these crazy 1760's foods - good times - and Amazon was a big help for dress, hoop, and wig.
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Miriam, that picture is a hoot, thanks for sharing! I hope you enjoyed your trip.
Pajim, crapiola, I'm hoping there's just a glitch in the system and that no operations are in your future. But will stay tuned to hear what's going on.
Mike and wife, Wandering, thinking of you.
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Mike, I hope your wife is feeling better and you can get out of the hospital soon.
One hour after I wrote you all both my MO and PA showed up. An entire delegation!! But there's nothing really wrong. There's a weird bone growth on the side of my femur. They don't think it's tumor. So he's going off to talk with the ROs and the 'bone guys' to see whether we need or want to do anything. Could be I don't even need radiation.
They did complain that I was making them work. I informed them that otherwise this wouldn't be any fun.
So four [action-packed] hours after I entered the building I got to leave. For a 2 minute infusion.
Truth be told I shouldn't have panicked. If this had been an emergency they would have called me on Friday or Monday.
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