Halaven - Day 1
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I had my port blood draw today and told the nurse about the headache. She thought it was from the anti-nausea drug but checked and I have had that same drug with every chemo infusion so is red flagging it for the onc to review. Am still very tired and tomorrow is day 8! So zoned I missed my first beeper call in waiting room and then left my purse there when I went in for blood draw!
I am still urpy and didn't realize how constipated I was (using daily senna stool softener) until I started going the last couple days! Guess I am having SE I didn't realize.
I feel so bad for all the people on here who have already been stopped from Halaven. My onc is excited about using this drug for my TN. I am his first patient to use it and his colleges who have used Halaven successfully recommended it.
Marybe I have read several of your posts and you are a beautiful person! Hope Adriamycin works for you! I was allergic to Adriamycin so used CT instead and lost all my fingernails. They did come back and look normal, or would if I quit biting them to the quick!
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Nancy, that's scary to be so zoned out. I always wonder what I don't even know I forgot .... make sense? I have more headaches than usual too. Feels like eye strain but eyeglasses okay. Be careful have someone watching out for ya if it gets worse. My DH is keeping an eye on me since I became a head- case.
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They changed my anti nausea pre drug and no head ache!! Feel good after only 3 hours sleep and am hoping my hair falls out!! I really want this to work!!
I live alone as I am divorced (ex has passed away) but my daughter is a college student here in Fargo. She left for a class trip to Europe Friday so I will depending on an older cousin till she gets back. Thanks for the message K-Lo.
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Has anyone developed any type of skin rash on Halaven? Or perhaps a skin issue due to the metastasis? I begin my 3rd round of Halaven on Wednesday. I started to develop bumps on my arms and a few on my tummy about 5 days ago. Now they're becoming itchy and spreading to my upper back, neck, thighs and behind my ears. Really strange. I haven't eaten anything different or had a change of detergent or anything. I'm wondering if this is an autoimmune thing. Anyone else have this? I've researched like crazy. It'd be nice to know of this is cancer related or merely an allergy.
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I'm not sure Elizabeth...my chest is itchy, but I thought it may have been the port. I have chemo on Thurs. and will ask. Haven't seen an actual rash.
Nancy B hoping that it works as well. Give the hair another week after the next infusion. The funny thing with the chemo is my hair started to grow back and has stopped with a fuzz..I have no hair on the crown, so picture me looking like a man who's balding and trying to save that last fuzz...its horrible but funny...still wearing wigs and scarves.
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Elizabeth, that is what my hair has done, too. Very thin on top but the sides and back are still pretty normal. Had my son's fiance buzz it with one of the longer guards and now it looks a little better but breaking out the scarves.
The first dose of Halaven I had a horrible headache for almost a week (thought I had a sinus infection). 2nd dose was a little better (just a couple of days). This time (third dose after a week off) I feel much better.
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Actually I like your picture Lori! I've thought about just cutting mine all off. May do that. I have scans Tues., so you guys keep me in your thoughts!
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Halaven hairdos could be their own thread. I haven't done it but at an art workshop for bc women, one woman used tee shirts, you cut off arms and then wrap, you tube has videos. cheap, colorful and easy to wash and toss out when they loose their shape too much, but looked great, various wways to twist etc. I appreciate that I have not had any headaches or rashes from halaven. I didn't know that in my area non stage 4 are getting fec as the drug cocktail not ac/tax like i did years ago. chemo brain me wondered what the e was it is erublin which is halaven. definitely need sea sponge flat stanley to start making the rounds. do you want me to start aand who wants it first. needs a name any ideas?
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I'd be happy to take it first and pass it on...what about Halle for the name...lol..
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I like Hallie for the name! I'm game!
I do the t-shirt wraps. They're great and so easy...and FREE! You can also get directions on the Look Good Feel Better web page. Felt like crud today...part Halaven flu like symptoms, part time change, part rainy day and part too much fiber for breakfast!
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Mamalizard... I have break outs again as with xeloda. Basically pimple-like on torso and (lady-parts) (embarrassing! )
Eag, think positive. I think I took a year off my life with negative fears before my recent scans. Exhausting, that stinking thinking.
second dose for me tomorrow. Wow don't they push it fast? Barely get port accessed and I'm done. Good thing.
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I know Kathy and agree..this disease leaves so many unknowns..and thank goodness it goes fast...the only thing that holds me up is waiting for stat lab results.
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Finally feeling better from my second shot of cycle one. So tired but as I am home I just take a nap. So far my hair is not shedding. Didn't get neuropathy which is a first for me as with other treatments I have ended up in hospital.Wish food tasted better, they all have a bitter taste!
Mamalizard: I have an itchy spot on my neck which now has bumps. It is at the spot where my port cord disappears. I haven't noticed it any other place.
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waaaaaa, I feel like puppy poop today. Its my week off but nausea and diarhea keep me close to potty. Im taking today off, calling in mierable.
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Hoping you feel better Kathy. I had chemo on Friday and I feel worse then I have in a long time....what are you taking, if anything?
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Zofran 4+4, ativan, Gatorade, immodium, lortab,........ any suggestions? What sx do you have, Eag?
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Just havent bounced back from the chemo Kathy...feel horrible these last few days...tonight lots of tears...gotta have that pity party every once in a while I guess.
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I have completed five cycles of halaven. After day 8 I am more tired andmy muscles scream for more oxygen but i am getting used to it. I don't think blood transfusions are an option unless my crit gets really super low. I hope they adjust your dose or figureout if it is something beside the halaven. I have no steroid or antinausea. I was alot worse when the old onc. forced decadron on me.Eliazabeth will I get to meet you at LBBC next month? Pity party serve a purpose. I started crying during a reiki that my son came with me and we were on adjacent tables holding hands and the energy wasso powerful my tears kept flowing. I could only think about how a mother holds her childs hand and now he is 23 and how I never hold his hand anymore., but could picture down the road and the final touch and letting go. I had to move to a visual of the japanese gardens i have visited. it was really hard to stay with the koi, trees, flowers, rocks, water when my mind kept trying to stray i raked the sand. Does any one here embrace reiki as well? You will feel better soon. It's hard to figure out the cycle but it's like remembering which days you got the worst cramps etc. HUgs and smiles.
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will work on halle. it will probably be open to my artistic interpretation
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Yes Penny!!! We get a chance to meet! Can't wait...how does reiki work? Is it similiar to yoga? I'm for anything that can give me inner peace. Feel so much better today! I knew I would...
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reiki is energy healing and involves practioner who works on you, very little physical touching, table like a comfy massage table, blanket, soothing music. no talking during the session. at cancer camps i have had treatments by reki volunteers and now at my cancer connection i can have a complimentary treatment of complementary care each week. i prefer massage but their are so different, sometimes not being touched is better. some would consider it hocus pocus and i might have a hard time payin 65-75 for an hour out of pocket but it helps to reduce my pain physical and emotional. at open reikki night i had 3 practioners working on me. if you feel nothing i would say that is not the person for you. there are all several levels- i would opt for reiki master. crickets answer for cancer may not cover reiki but they would cover a massage or 2 for you depending on cost. halle signing in phillie!
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Hello Halaven Heavenly Heroines
who's enjoying their week off? I had a great day today but then I've had decadron.. worked out at the Y. Dh agrees to drive to beach tomorrow.
I bet my counts are down tho. Can any of you tell when they are low? I could predict with abraxane, even knew when they would cancel my tx. All OK it happened twice but t was empowering.
ANY appetite issues, what's shaking with y'all?0 -
Hallo from Halaven five o my # of cycles completed. i do 3 days of neupogen 9-11 so whites stay ok. the hit to my reds and perpetual sob with exertion or feeling like every muscle fiber is screaming for oxygen is not fun, glad i don't mind eating red meat. i think it has to get really low before a transfusion. procrit isn't used anymore is it? saw hunger games with my daughter-loved it-michelle lawrence was the right one cast-especially after i saw her in winter's bone.- any helpful hints on dealing with low reds? my onc has none other than this is the life on constant chemo. tumor markers coming up and she is checking ldh level, i asked why and someting about halaven and kidneys, but hadn't read that anywhere. will have bard power port slim design installed soon. happy halle days except for 2-3 right after infusion.
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Hey Halaven ladies...chemo Thursday..so today feeling that fluish, yucky feeling. Off next week and cant wait!!! Means I have 11 days to regroup. How is everyone and are we all still holding steady with our treatments??? Anemia detected Thursday. Thursday evening felt good, again because of the Decadron. Whats happening with everybody else??? When I dont hear from you guys I miss you!
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Hi, Halaven-Honeys,
Tell me I'm crazy but id prefer all of the hair to fall out than this slow trickle to semi-baldness. And is it just the scalp? Still got plenty on legs at beach... here I am wishing it was like abraxane - OUT and done with.
Anyone get this hot feeling in the face? It doesn't feel like a fever, just severe blushing.
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Oh Kathy I'm so sorry..laughing at you this morning. I feel the same way. I'd rather be bald than have this semi-fuzz thing I've got going on. lol...To make it worse, as I've said before it's like a man going bald. I've got fuzz and then the crown and my nape are bald. I'm so thankful though..I have brows!!! Thought about getting eyelash extensions, but nothing to hold on to..
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Forgot to ask...I may have asked before. Excuse the chemo brain. If you have chemo on Thursday with Decadron, etc. by Sunday, do you guys feel as horrible as I do? Then Monday, and going forward, you start feeling better? Just curious. On Saturday and Sunday, sometimes the steroids make me feel so confused and just weird. Is it just me? I'm sure we all have different side effects.
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Good morning, Looking forward to meeting you in Phil; instead of in Avatar form. I no longer use steroids much better days 3/4 without decadron. I think most of us are fine day2 and then 3/4 vary. I sometimes feel flulike to just weird. I usually don't drive until day 5, stock up and wait to get whacked again on day 8. My fatigue is getting worse each cycle but i was trying to get up with my 19y/o. I usually need a down day if I have an active one. Has anyone heard from Donese and Robin?
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I was going to ask the same thing...wondering where Donese, Robin, and the other Elizabeth are. Can you believe it...we actually get to meet in person!
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Forgot to ask...again...Penny4cats..so its an option not to have the decadron? I cant take it. Drove to the store this am and was so thankful that I went at 5 when there was no traffic!
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