Halaven - Day 1

bourscheid

Last time I was on Abraxane I also had Avastin.  This time will just be Abraxane.  I lost my hair, had some neuropathy and was tired especially on Day 3 and 4.  Taste changed, too for a few days.  Other than that, I don't remember other side effects that I had.  It was very tolerable for me.  That said, I also understand that I had not been on any chemo before and now I have been on chemo for almost 4 years straight so it may be a bit tougher this time or maybe easier because my body is used to chemo.  Who knows?

I am thinking about going out on disability at the end of this school year.  Finally decided that it is time for ME to live my life how I want to and not by someone else's schedule.  Thoughts?

eag1954

Take some time for you Lori!  It'll be nice to do some of the things you've been wanting to do and as you said, not have to worry about anyone elses schedule.

penny4cats

Lori, You will not regret your decision at all. I found I missed my patients but not all the other aspects of work. I am working on my legacy piece for my Sarah and Josh...what really matters..my journals..organized family movies..still figuring out snapfish..I live every day and use what energy I have for things that fill my heart..continuing on the path to healing. hugs and can't wait to see fb pictures of you at the beach.

K-Lo

Definitely take your SS benefits, Lori. I miss working but realize this is my chance to enjoy retirement. I put a lot if $$$ into the system. Its OK for me to live on the benefits for the time left.

And the energy I do have can be given to family andfor organizing our lives to make things easier.

So they ran out of halaven Tuesday and had to order some right quick. Got it yesterday so must move day 8. Doubt the WBC's will be high enough by then. Eager to get eye rads. Med Onc convinced all of us to wait for 2 more doses. So, mid-may to rescue retinas.

/p>

bcsurvivor76

Yesterday I was scheduled for my day 8 treatment in round one...but found out my white count was too low, and I am neutropenic so my chemo was delayed. I could not get neulatsa doc said because it was to late..anyone else had this happen? I am worried since I only had one treatment and had an issue. Does this mean I will have to go off often drug?

Bunker2007

Lori sorry to hear about the Halaven...but it is good that Abraxane has worked for you before...keep your chin up girlie...that's an order!

Donese

K-Lo

Hey BC, I've had several.txs cancelled sue to low ANC and never did.anyone mention neulasta..... they always send me home and turn down the dose. With abraxane, the lower dose contd to work.for me. Now with halaven we shall see. I will ask.about neulasta. Do you know how low your absolute neutrophils went?

Anonymous

When I was on Halaven, I did get the neulasta shots.....usually it was after the 2nd treatment and the day after...would get the chemo on Wed. and then the neulasta on Thurs.  The neulasta was harder for me to tolerate than the chemo, made me feel like I had the ful, ached all over and temp, BUT not everyone gets that reaction.  The neulasta took my white count way up, like I think it was 40 one time.  Of course if I would get it would depend on what the blood work showed.  My white count stays at around 2 or 3 with the Adriamycin I am doing now, but for some reason they are not concerned with it.   I don't understand the part about your onco saying it was too late to get it.....too late in the day to do it, too late in the week since weekend was coming up?  

K-Lo

Hello Heavenlies,

Hows the fatigue for yall?   We are having company and it is actually energizing to get ready.

Tomorrow is day 1 of third cycle for this broad, then I wait until May 11 to get eyes checked.  Grrr.   Its just that my imagination focuses on which ever part had been found to be affected last.   So now my eyes and temples hurt. 

Goofy

eag1954

Thursday is day 1 for me.  By Sunday I'll be sleeping at least 8-10 hours.  Day 8 I begin to feel better, then its chemo again!

K-Lo

Went in for day 8. But it was only day 7! because they had to order halaven last week. Oh well at least the blood work is done and counts are adequate. Ill go back tomorrow like a good patient.

penny4cats

loved halaven but colon mets growing after only 4 mos so on to gemzar or affinitor/aromsin...sorry hallie the traveling sponge never left on her journey...will be thinking of you and your halaven hairdos..sorry i didn't get to stay in our club longer

bcsurvivor76

K-LO, I am unclear as to why I did not get any shots.  I thought is was because I was too low.  Plus, they think I had a sinus infection and started me on antibiotics.  I am going in tomorrow for the 2nd treatment of the first cycle.  I am so curious how my counts will be, and IF they will give me  a shot the following day.  I did speak to my doc briefly today, and she mentioned they were going to change my dose.  I asked if that meant the schedule as well, and she was going to get back to me.  So, tomorrow I will have more feedback, and will update everyone as soon as I arrive home :-)

I will say skipping that dose allowed me to recover well, and fuel my body with some food for energy!

K-Lo

Penny, so sorry you need a new drug. Please check back in to tell us how you're doing?

Bc, so many mysteries...

y'all we had our favorite family in this week. I'm exhausted but mostly because we did everything we wanted to do. Crazy birding (hours walking in the heat....felt sick for about 15 minutes ....ate ginger candy, moved on)

It astonishes me how my mental status affects my physical status!

eag1954

Penny, so sorry its on to a new chemo.  I hate this disease...and I cant say that enough.  Today during my fatigue...all I could think of is how I'd love to feel good..Hey Kathy, glad you had a good time.  Me?  Tired...tired..tired..

K-Lo

Hey Eag I'm giving in to " tired" too, now that guests are gone.

problem: I'm short of breath with minimal exertion. The only thing I have changed is no formal workouts, so overall conditioning and muscle tone is down. Any breathing se's with halaven y'all know if? Lungs sounded clear 2 weeks ago. Refuse to give in to MO grimness.

eag1954

That happens to me as well Kathy.  I have lung mets so dont know if its that or a se.

penny4cats

i was sob with minmal exertion because reds/hemoglobin/hematocrit were always in the toliet. loved being anemic, craved barely cooked red meat could have mistaken me for a vampire.

K-Lo

Loved being anemic....oh henny penny

K-Lo

Anything going on? Tired 50% of the time here... can get things done then collapse.

eag1954

Nothing happening here Kathy.  Woke up at 4am.  Today is chemo day..and wouldnt you know it?  I feel better this morning then I have all week..lol.  My onco is horrible..how do I change?  Get 2nd opinion?

eag1954

Last Thursday was day 1 which is the day to see him...in the room next door and never came in.  When he does come, he mumbles a few words and he's gone.  Lost pain meds wouldnt refill, told his nurse to tell me go to the er, maybe they'd give me something, shall I go on?????

K-Lo

Whoa this is substandard. Ask a chemo nurse you trust, who she would go to. In this case, switching would have to be my choice. The other doctors get nervous taking someones patient. But, I find that if you are vague and simply say you need a change, they can move on. You deserve it.

bcsurvivor76

Hi Ladies, just checking in. I had my second treatment from round one. I had a lower dose, and tolerated this one much better. I get my treatment on Fridays, and Saturday's I have a terrible headache, sunday, Monday, Tuesday, nausea and fatigue. Wednesday, I start to feel like I can eat again.

I am going this Friday for the first treatment of cycle 2. My hair is thinning out for sure. I wonder when it will come out in clumps? Can anyone provide their experience with that?

Also, I am wondering how many cycles your docs have you on? I am so clueless how many I will need to have.

Wishing everyone more energy!

K-Lo

Dear BC,

1. My hair has thinned just to the point of looking weird. I have heard that this is the most common effect.   It comes out in my fingers but nothing like Abraxane.   I wear a wig for serious public outings. 

2. I would expect my MO to leave me on halaven indefinitely.  We check chest CT May 29 and expect regression, so it will be day 1, day 8 for months.....

**   My question:  constipation, diarrhea or what?  I'm having weird "bottom" issues, if you get my drift.....    Like I gotta get some of that special bathroom tissue that sounded like a waste of money at first

menan

Cycle 4 this week for me.  I'm on a reduced dosage (2.5) but still having problems with wbc so going to a four week cycle - Halaven days 1 and 8 and then two weeks to recover.  I had severe shortness of breath so was afraid my lung mets were back but my xray was clear.  Never thought of it as a side affect of treatment! 

Sorry I don't check in here more often, but I keep getting told to stay off the chat sights as they get me too depressed.  My hair thinned after second treatment until I looked horrid so I shaved it off.  I do have 3 wigs and lots of scarves.  I saw my chart and I am approved for 99 treatments which means until it stops working.  I'll have a PET scan later in June when we take a break because I have a family reunion in KC.

 About the  bowels, I start my stool softener a day before treatment and drink lots of water.  My secret in case I get constipated, which I did with my first treatment, is pecan pie.  I've not had a problem with diarrhea. 

Eag1954 - You deserve to have a  MO that treats you like a person and answers your questions.  Do they have a patient liaison, or possibly by another name, at the clinic that advocates for you?  When a friend had a similar problem she was advised to talk to this person and did change MO.

Still tired and chemo on Thur!  But I did have a busy past 2 weeks with family here and my daughter graduating from college.

Take care everyone!

Nancy 

eag1954

Hey Nancy B...without a doubt!  My MO came in and talked to me Thursday and really solved nothing.  I'm just trying to check out all my options.  So you're going to be in me and Apples neck of the woods for your family reunion!  Any idea where you're staying?  I know the chat sites can be depressing, but I miss you guys when you dont post and wonder how you're doing.  Like you, I'm on Halaven for the duration, or if it stops working.  Please come back and post just to let me know how you liked KC and what you did...

eag1954

Oh...I've been having weird bowel issues too...at first, constipated, now for the past two cycles diarrhea..you just never know.  I was so fatigued, I didnt get a chance to go out for dinner Mothers Day...that really sucked!

K-Lo

The unpredictability is weird here.  My F&F see me bopping and singing and then I may be in bed all day or looking like a creature from Dark Shadows. 

BTW I cant wait to see that movie.

K-Lo

Helllooooo, anyone still on Halaven?

Im off for >= 6 weeks for radiation and Im scared.  But jeez I look less corpse-like.......

Anyone?