Halaven - Day 1
Comments
-
i'm liking Halaven.. i have lots energy comparatively... wake up with night sweats and sometimes need a good sleeping nap. not too much appetite. I just have a good attitude.. i have lots to do and don't feel overwhelmed.
I hope everyone feels as good as i do.
oh yeah.. got that constipation thing going on.
0 -
The constipation sneaks up on ya.
Fabulous getaway w old friend on a river in TN. Definite bucket list check- off.
MRI brain clean again which means Halaven is holding mets in local jail.
)
Mostly i feel like Apple (MM). Fortunate.
Every good day is worth ten times the ordinary days before mets. Love to all0 -
Got my Cycle 6 day 1 yesterday. Blood work good except for liver but they are lower each blood draw so OC pleased.
Elizabeth, my OC is blaming my weakness on the neuropathy and it did get better the month I was off treatment. I can now open my own water bottles!! And tired, even this week, my good week, I was falling asleep watching tV in eve and not waking up for 4 hours. My time limit for being out is 2 hours but that is because my feet go numb then and burn.
OC also said we can use Halaven as long as it is working. And scheduled a PET Scan in 3 weeks to see if it is still working. I had my last one on June 1 which had some questionable spots in chest cavity/lung.
Lack of appetite is a major one for me and I live alone so I wasn't cooking and frozen meals get old. I signed up for meals on wheels (I'm 61) so I now get to eat one meal without cooking, and I usually have some left for lunch later. I'm grazing about 6 times a day to control nausea and/or heartburn, except last night when I was eating constantly thanks to the steroid! I also haven't slept yet!
We had a record high of 100 at airport yesterday but the signs downtown said 103-104 and the annual street fair was this week. A cold front came through so our expected high today is 90!
HOTH - don't those low WBC get you! The clinic is finally calling me to tell me whether I can get chemo the next day even though I have to come in anyway to get the needle out of my port. Congratulation on the tumor markers! Keep on Keeping on!
0 -
Glad to hear you guys are tolerating Halaven pretty well. It just wears me down. I'm going for a three day getaway to Eureka Springs AR. tomorrow and hoping that I have the energy to enjoy it. Its been hot here for the past couple of weeks as well. To top it off no rain! When I go outside I'm drained! I'm still praying for the day when one of our Halaven sisters posts that they've met NED!!!!
0 -
i certainly have met the nap times.. egads.. i am going to take one right now. .. actually retiring. - it's not even 8 altho i will stay awake at the tv for at least an hour.
0 -
All of my tumor markers and liver enzmes are within it's normal range !!!! I started Halaven the beginning of April and I'm very happy with the results. I wonder how long I will have to stay at this dosage?
I have my chemo on Monday and I sleep for about 18 hours Wednesday night into Thursday morning. If I do that, I don't have to take many naps during the week.0 -
Ya Eag and Apple, Nancy you're not alone with the amount of rest required. I get less and less of a boost from the ritalin, but I have also fallen from the exercise wagon.
Congrats Spam.... your happiness is ours!
0 -
That's wonderful news, SPAMgirl!
0 -
Dear Friends,
I'm never sure where to post but I think this is the right thread as believe Halaven is working for me.
Last week my brain scan came back : "Terrific, no new or old tumors."
My arm scan revealed no bone cancer, just a tear of some kind.
Yesterday, the ophthalmologist said, "Oh this is wonderful, there is dramatic shrinkage in both tumors" (he's so sweet!)
So my theory is: Gamma Knife, Linear accelerator killed brain and eye tumors, and halaven is keeping new ones from cloning and traveling. Sound good?
Next chest/abd/pelvic CT in August. Expect chest to be same but that's okay.
Hope!
Kathy
0 -
hurray!
0 -
Way to go Spam and Kathy! Now for another nap!
0 -
Way to go gals! Whooping for you all the way! Lx
0 -
WOW! I wished it had work this well for everyone.
0 -
Wonderful!
0 -
Went to receive a Halaven treatment today. Last week when I went, my WBC was 1.8, too low to get treatment. This week WBC was 2.5, so still no treatment.
I am starting to get worried. I know that there are multiple tumors in my liver now, some as large as 2.5 cm, and yet I am receiving no chemo. Thank goodness I am meeting my new onc. next Monday and heading to Johns Hopkins on Wed. I need some answers!
0 -
HOTH,
do they calculate the absolute neutrophil count?
My team says that's wHat matters.
Say the anc is 90%. If the cutoff is 1000 anc, id be ok to go with wbc 1.8. Sonebody check me here , im not certain. But thats how it was w abraxane and halaven
i know the oncologist is not wrong, just saying we should try to understand what we can to be our best advocate.... anyone?0 -
Hoth - I just went back and checked my CaringBridge site and I got my cycle 1 day 8 treatment with a WBC of 1.5 but I was also put on Leviquin to fight infections and the Halaven dosage was reduced by 20% the next cycle. But every clinic has their own protocol I'm sure. My MO goes by Absolute SEG and I think the magic number is 1.5. On May 10th I didn"t get chemo and my WBC was 2.9 and absolute SEG 1.160 so maybe there are other SE they also monitor. I don't remember what makes up the Absolute Seg but it does include the immature developing cells Kathy mentioned also.
Kathy, what are you doing up? I never seem to sleep the night before treatment and tonight my daughter has boyfriend problems to add to my sleeplessness. Time to try again to fall asleep but having the needle in my port is as uncomfortable as the drains!
0 -
Thanks for the information, Kathy and Nancy! I haven't heard of what you're referring to. I will definitely ask my new onc. on Monday.
0 -
Hey, Menan, I just woke up! Good to know someone is out there!
0 -
Hello Heavenlies!
Can I b*tch? Can you relate?? This diarrhea is bumming me out. Gotta eat something but then pay the price.......
Tomorrow, its zofran and immodium. Prefer constipation to the hot trots.
Its almost as sudden and severe as on Xeloda. Do you think the more tretaments you take the worse the SE's get?
Thx
0 -
You'd better believe I can relate~~ Your rant is mild. Considering the way I feel after chemo, I could go on and on. I nw have diarrhea to. I've been on Halaven for over a year and I really do think the side effects get worse! I know treatment is a necessary evil, but I dread day 1 on Thursday!!!!
0 -
I'm still on the constipation side of life and I'm 4 months in. My onc told me yesterday that the SE are cumulative. She also told me she's seen a lot of success with patients under 50-60, but patients older than that do not have much success.
0 -
My tumor makers are down another 300 pts. Since going on Halaven they have dropped from over 900 to just over 300. And with having to postpone treatments because of low counts, I have only received 40% of the dosage I should have had during this time period.
I am feeling hopeful!
So sorry to hear about the diarrhea issues. I haven't experienced that yet.
0 -
Hey, yall, have you ever noticed that one or two of the chemo nurses is a rebel? Every other nurse has sat down and patiently pushed this Halaven over 5 minutes. Then Ms. Grumpy comes over and shwooosh , its in as fast as she can push the plunger.
So, last time I had her, I said, " Hey, K____, why is it that some people push Halaven slow and some fast? Whats the reason behind it?" She said, "I dunno, Ill check with pharmacy, but I thought it was just push".
When she got the drug, she sat down and pushed it slowly.
You know, if a rule is stupid or wrong, tell everyone. But if there's a reason for caution, maybe something bad has happened to someone. Like kidney failure, who knows? (I cant find it in literature)
0 -
Good job on being your own advocate. You probably helped others. Good job !
0 -
K-Lo - My last one did the push really fast but seemed distracted and then found out anoter patient had had a reaction to Taxotere. And didn't someone say they had stroke like symptoms from Halavan? I wish we would get the same nurses every time. I might make that request and see what happens.
Do any of you Stage 4/high risk feel like the nurses are stand offish to us? I notice some seem to visit more with other patients and ask about their families. Seems I get different nurses every time.
PET Scan Wed. to see is Halavan is still working. My hair is growing back but I'm still getting flu feeling and tired! See my MO on Thur for results and hopefully another dose. And I'm still at constipation phase but handling it with senna.
These are my good few days so I am going to staRT LIVING. I have been being real conservative - staying away from crowds, avoiding germs and staying home. You all put me to shame so I plan to get more active.
0 -
My nurse just gave it ti me as a flu shot. Not even sub q. Just right in my belly. Head nurse just called me to tell me they know don't know if it will work since it didn't go straight into my blood stream. They are investigating now.
0 -
WOW Spam!!
And I thought it was bad having to remind nurses I'm allergic to tagaderm!! I would call my MO and ask what they found out just to make sure he knows what happened. I worked in a nursing home passing meds so I know alot of nurse's error never get reported to Drs.
Holdontohope- Good work on the markers! Are you sure it isn't a 40% reduction? I was at that up until June and now it is 50%.
And btw, I will be 62 the end of September so hope I'm still unique and Halaven is working. In December, I will be 5 years TNIBC and part of the 40% alive, but who's counting?
0 -
I just want to be sure. Does everyone get their Haleven as a push in their IV into their chemo port, or do you get it like a flu shot. I've always gotten it through my Chemo port, but I feel awful after getting like a flu shot yesterday.
0 -
Spam - through my port And I really would call my Dr. if I had that happen and then felt awful.
0
