Halaven - Day 1
Comments
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Tex, you just had scans? What a mixed bag of tricks .you're getting. Doxil was wicked for me. I hope you get the right tx for you. Radiation.therapy has come a loooong way in the years since I first started. I'm very impressed and glad to hear that p you're in a good facility with the latest. Mmm mmm mm. What a life
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Donese: Great on Robin's skin mets. Mine are on the left side where I already had 35x rads in 07 with my first dx, so I can't get any more rads there. Poop.
I'm so glad Robin is doing better!! And yes, you both have all our support. I've told my DH there is a lot of support for him on this site also, but he's so busy working and in his master's program, he hasn't had a chance to check out all the wonderful caregivers here and the support. I'm not looking forward to Doxil, as it's just another form of that wicked Adriamycin that I took in 07, but... we do what we have to do. My hair will definitely fall out, but it's been sincerely trying to for several months.
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Karen, it must be a common occurrence to have skin mets where the original cancer site originated. Robin's mets also were also on her left side where the cancer originated.
Keep us posted on the new treatment, ok.
Donese0 -
Can't get the Doxil... totally not being manufactured, and they are controlling the remaining doses carefully. Doc can submit a ton of justification for me, but they only send one dose at a time, and you are not promised a second... IS THAT THE MOST STUPID THING YOU'VE EVER HEARD!!??
I will do carboplatin and Camtosar (one of the new PARPs). Looks promising anyway....
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Karen definately praying for this one to work.
Hiding from it, it seems as if we're in that day 3/4 schedule together. I have chemo on Thursday to, so I won't be able to sleep tonight. Its almost 1130pm my time so going to the grocery store. I have to do everything Thursday and Friday. I make sure my bed is perfect for Sunday when I crash..plug the speakers in the laptop, and watch movies and old tv shows or surf the web in between long naps. I begin to feel better on Monday, this coming week is my off week, so I'm looking forward to that.
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I have another question for you ladies..on the FDA website it says:
The study was designed to measure the length of time from when this treatment
started until a patient's death (overall survival). The median overall survival
for patients receiving Halaven was 13.1 months compared with 10.6 months for
those who received a single agent therapy.That doesn't mean Halaven is the last drug tried for us does it?? Because once it quits working they'll try something else right? It just freaked me out ladies because I'm going on almost a year on it..and I got this feeling of fear in the pit of my stomach...talk me down ladies. I get scans again in March and I'm hoping they're still showing stable.
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Elizabeth-
One thing I have learned about the chemo drugs you guys are on is that the FDA and half a dozen other research studies must give out statistics on the relivance of each drug. Halaven states 13.1 months, Xoloda states something like approx 16 months, so there are different drugs that state different success rates.
The fortunate thing for women who have stage IV breast cancer is that there are many drugs and or coctails the onc's can put together to put the disease in remission, put the disease in check, make the disease tolerable. Some statistics are claiming that breast cancer is well on its way of being a disease that is manageable like diabetes and heart disease. So what I am saying in a nutshell is that if one thing fails, there is another one to try. Research and the FDA are finding and approving chemo drugs more now than 10 even 15 years ago. This is exciting because the quality of life may become better.
I want to stress something to you guys, I am a caregiver. I do not have cancer. I have no idea what it is like to face the challenges you women face on a daily basis. But I have found that stage IV women are the strongest women I have ever been around. The mental and physical anguish you experience is humbliing to people like me.
My best advice is not to read everything in the world on the internet. It is a valuable resource, but by no means is it the end all be all on servival rates.
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Those research statistics are "stats", but not FACTS. Yes, just because you're on Halaven now, if it stops working, like me, you'll go on to something else. My bones are STABLE and there is no organ involvement, so I'll keep going and doing whatever they have for me. If I reach the end of the FDA approved, standard treatments, then I'll go to a research center and get into trials of new stuff. There is always something out there.....
Elizabeth; you are very blessed to be a year on this... keep it going, and your scans will be fine, I am sure !!
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Liz all the studies.say that. Time to progression time to mortality. But I will be started on halaven and she told me at least 3 more she had in my list if no good.
Kathy
Diagnosis: 8/30/2010, IDC, Stage IV, ER+/PR-, HER2-0 -
And that bed party sounds good. What if we could all climb into a massive bed and keep each other company? Maybe we should skype. (Ill forget that idea the second.I.log off)
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Hey all! I just have to add my two sense about Halaven. Can I just say I'm in love? I just finished my second round two days ago. The side effects seem so minimal and hardly more than a minor inconvenience. I suppose I'm still comparing this drug to my last chemo cocktail of carboplatin/taxotere---which put me near death! Probably the worst SE is constipation--so I'm trying to just stay on top Of that with laxatives and stool softeners. Per the advice of some earlier comments, I've been taking Astragalus to help with energy and white counts. So far, so good! I'm actually energized!! And my white counts went UP from my third to fourth treatments! (went from 2.5 to 3.86!) I haven't suffered any neuropathy nor any additional bone pain. I get a little nauseous sometimes, but I think it's because of the constipation. All in all, I don't even feel like I'm on chemo!
I forget who asked about steroids. I had decadron my first treatment and hated it. So I haven't had steroids for my last 3 treatments. I've felt MUCH better and more "normal" without steroids.
About hair loss. I went ahead and had it shaved after my 3rd treatment. My head was just so tender/sore and I was shedding too much. I may have jumped the gun, as it may have only thinned. But I just wanted to be done with it and the hassle (and trauma) of having hairs all over the place. I haven't lost my eyebrows or lashes. To the one who mentioned permanent brows--do it! I had my brows and eyeliner tattooed last year (while on chemo) and am SO glad I did it! Now I don't feel like I always look sickly.
I know everybody's different and has different side effects. My age (36) and the fact that my cancer is widespread throughout my bones only may play a factor into my lack of side effects. I'm so sorry for those with harsher effects. Makes me wonder if this drug isn't working for me. I won't have a scan until after my 4th round.
In the meantime, I'm enjoying Halaven!0 -
So mama, with H you did not lose eyebrows? What about body hair?
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K-lo, I've only had two rounds (4 treatments) so far, but I still have brows & lashes. I haven't had under arm hair since carboplatin/taxotere, so that's been nice. Leg hair is really thin and sporadic. I don't have to shave, since it's so light. But I DID run a razor over my legs last night since I had a massage today! It was the quickest shave ever!
By the way, I just ordered some refills of BarleyLife capsules that I've been taking for a few months. Anyone else take this or barley green powder? I don't have the healthiest diet, and I know that greens are so good for oxygen for the cells. Anyway, I just read some more reviews and BarleyLife is known to increase energy and is often used to decrease nausea for cancer patients. Perhaps this is why I'm handling chemo so well this time around?! Anyone else have input on barley or something similar?0 -
Just had my first Halaven tx yesterday. Feel actually pretty good today! Went to work (I teach 3rd grade) then home to relax and all is well. I am enjoying reading your posts and hope that Halaven is gentle and effective for all of us!
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Mamalizard (aka Liz)-
My partner, Robin, has not had any hair loss with Halaven. I really think the hair loss in patient specific. So many on here have had no hair loss and some have experienced "thinning" and some out and out bald! I'm so happy it is working for you. Robin is on the end of round two (treatment 4 next Friday) and she is having a great response to the drug. Thank you God!
BTW: Robin's chest tube was taken out today! We did a little dance and jig at the hospital. The nurses joined in...what a hoot!
Talk to you guys later!!!!!!0 -
Hi all, I am not a regular contributor to the boards but read it faithfully and find such joy in your successes and such sadness in the setbacks. I am new to Halaven. I wish I had more faith in this drug but have failed so many... I really wanted to try Affinitor\Arimidex, but Onc was vehement about doing Halaven first. She won't even ask for a predetermination with Ins. company... mine just might cover it. I think it is time to go back to Johns Hopkins. It's 7 hours away but I am so afraid that we are going to fool around with this drug and my liver is going to get so weak that I will run out of time. (I am going to be a grandma for first time in October... a great goal to shoot to shoot for.) At least I convinced local Onc. to scan after 2 cycles. My liver tumors doubled in size and number in just 2 1/2 months while staying on abraxine too long. So she agreed.
Wishing everyone the best. I am awfully glad this thread has been running from the beginning, what great advice I have learned about SEs and how to manage them and, of course, what the outcomes have been for those on the drug.
Jackie
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Claygirl (Jackie)
I applaud you for sticking up for yourself with your onc. You are the patient and doctors are not only to take care of you medically but also be your advocate! If they cannot be your advocate, then you do and that is hard when you feel you might not know all the answers.0 -
My onc wants me to try halaven too, but I am hesitant. after um 7 years and 12 diff treatments, I am kind of over trying a new one and dealing with side effects, hair loss etc. So for now I am sticking with gemzar. Went back to doing Gemzar twice a month instead of once so hopefully it will start working again. I just seem to get every weird side effect known to man with all of these drugs and quality of life is becoming more and more important to me.
Your posts on this drug are very helpful though cuz at some point i might change my mind.
And you skin mets gals...mine have broken through the skin and are open wounds now..is Halaven helping those type at all? Just curious. Thanks!
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Toyoungtohavebc:
First, my partner can sympathize with you regarding SE's. I sware, every flippin SE out there she has just about had: constipation, hair loss, sore and dry hands & feet, low blood cell counts, low iron, low vitamin D, and low potassium to name a few.
Second, Robin (my partner), has also had mets that broke through the skin and Halaven is helping. Though to be honest-she had some radiation before Halaven and that gave Halaven an extra boost. However, Halaven works well without the radiation, too.
Third, Halaven has not had some of the bad SE's as other chemo drugs.
For what it's worth, there is my opinion....0 -
Hey Donese, Thanks for the thumbs up... I left the office frightened and frustrated. It is very scary to read those dreaded words on the ct report "multiple lesions scattered through both lobes of liver have significantly increased in size and number since prior scan" (about 2 1/2 months) Yikes. I am going to call the Onc I was working with at Hopkins on Monday. I only left there because the drive was getting to be too much once I started IV chemo. She's a "make it happen person" and I know we can come up with a satisfactory plan.
Thanks again and best of luck to both you and Robin,
Jackie
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Hey Jackie-
Then get your little butt up to John Hopkins and grab that Onc and tell her it's time to "kick cancer's *ss"!!!!! Chica...you are the captin of this ship...steer it on the course you need it to go.
All of this cancer crap is hard to put your head around. It is really easy to get caught up in the weeds and forget the battles you have won. Your still here so your winning!
Just think of me as the rah-rah cheerleader encouraging you guys to continue the fight. Cheerleader-that concept is a little funny. If you really knew me you would know that I am the opposite of a cheerleader.
Jackie, I'm glad I could help you
Donese0 -
First week with Halaven was actually pretty good. Chemo on Thursday, work on Friday, crashed on Sat. and Sun so I just occupied the couch then back to work on Monday. Felt great by Monday afternoon and throughout the week. (except for a nagging sinus headache). Back for #2 tomorrow. Let's hope this week goes as well and I can kick this headache away.
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Lori thats pretty much how it works. my chemo day is Thurs., so Saturday and Sunday I feel the same way.
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Had chemo yesterday. Preparing for the weekend. Noones posted lately so I just wanted to check in and see how everyone is doing. Bunker?? Hows everything going? Tooyoung have you tried the Halaven yet? As I said, just wanted to see how everyone is..any new decisions? Anything...I miss you guys!!!!
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Hey eag...how are you? Sorry, it's been a busy couple of weeks. Robin is doing well. She is tired a lot but overall she is good. She is getting treatment today - Havalen- and then she is having a breathing test performed this afternoon. She is still coughing a lot, but they can't find a root cause - its not cancer which is good.
My daughter has had a lot going on, too.
So, please let me know what's up with you.
Donese
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Hey Bunker,
I was off last week and I felt really good. Had treatment yesterday, so I've been up all night..cant fall asleep at all.. Glad Robin is ok, and even more happy that its not cancer related!
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hi, glad to hear about robin and from you elizabeth. i finished cycle 4 yesterday. anyone taking neupogen day 9/10/11 other than me? still adjusting to the perpetual anemia from the chemo. feel like the dainty ladies of past centuries, drink my tea, read, eat chocolates, write in journals, trying to figure out and actually do snapfish books. stilll think we could do a flat sea sponge like flat stanley where the sponge comes to visit and we sign and send to the next person. we lost karen doing our tshirts due to halaven not working for her. i will try to find out what said sponge looks like. crashing on sat/sun. hugs and smiles. what is in bloom down your way? penny
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Hi eag,
I think I am gonna pass on Halaven for now. I asked to have my evil gemzar dosage and frequency increased again to see it that would help first and I think it is helping a bit. Am sure Onc will push for me to switch to Halaven, but at this point, I am not mentally ready to try another agent. I prefer to deal with the evil I know vs the evil I don't. I just get too many side effects from all these drugs and none of them take all the cancer away..the best I usually get on any of them is stable for a few months. But I do still check the the boards to see how everyone else is doing cuz one day I might be forced to switch. Glad that it's working well for you gals!
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Penny I'm game for whatever you decide. Just wanted to check and see what was going on with everyone...tooyoung I cant blame you. I dont do the Nepougen so far havent had to miss a treatment. Stay in touch everyone we need each other! At least know i do...and i miss everyone when you dont post.
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Hello ladies
I'm also having eribulin but I'm in the uk. I've just completed cycle 3 (had day 8 infusion on Tuesday). I have full ct + bone scans on Tuesday but I'm convinced I've had some significant progression whilst on this chemo
I have found it quite doable in terms of day to day se's. But I've had some pretty serious se's lately- whetger it's the eribulin or the bc, we can't be sure. I have regular chest pain + have developed quite a fast + irregular heartbeat. I'm also having some bone pain + my lower back keep giving in on me, hence next wks bone scan. The scariest symptom I've had so far occured within an hour of my infusion on Tuesday. I suddenly experienced severe numbness + tingling in left side of face + head. It was really bad + ended in bad pins + needles in my face. I think I had a mini stroke (TIA) + my onc agrees but she has never heard of adverse neurological reactions to eribulin (although it is pretty new I guess). I'm having a brain scan on Tuesday, my 1st in 18m so I'm pretty scared in case I have brain mets. I'm triple neg so I'm fairly high risk, I'm told.
Really thought eribulin was a bit of a wonder drug but it doesn't seem so in my case. Nodes at clavical are bulging, beathing is no better, nor is the liver pain.
Think capecetabine is pencilled in as my next treatment + I can access avastin too, using hubby's private health through work.
Just wanted to share my experience to see if anyone else has had anything similar? Cycle 1 was so easy but my body jyst doesn't seem to like this chemo at all
good luck+ best wishes to everyone
tina x0
