Halaven - Day 1
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Started Cycle 3 today.... doing pretty good but red blood count is down to 8.9; will get 2 units next week again. Chemo seems to hit that part of my marrow rather than the white cells, but that's ok, I don't need the nasty neulasta!! Was very tired last week, but between the anemia and fighting a cold, I don't think it was all chemo. Some food/taste/appetite issues still, but they vary from day to day and I just try to be flexible. One surprise: After my hair started falling out in handfuls the first two cycles, it has stopped.... I don't think I'm going to lose it. It's very thin, but I don't look like a mangy dog yet, so I'll just wear hats, caps if I think I need to. Will see if this next cycle starts the shedding again or not.
The only other lady who started Halaven at my center when I did (we're the first two patients on it) has had a great response too. She has lung mets and was on oxygen, and after the first cycle, she no longer needs her oxygen !! How is everyone else doing??
I'll have the t-shirt pictures in the next week or so... we can vote and I'll get prices. I don't mind 'taking orders' and mailing them out to everyone who wants them if we can pick one we agree on.
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Hi, gladto know i may keep a little hair. i will start my cycle 3 next week with no premed. I was relieved cycle 2 was not as bad. I am settling into a life that my fulltime job is me. taking care of me as much as i can. hobbies who had time other than reading before am but now i knit and am enjoying sewing class. I need a computer tutor so i can make snapfish books for my young adults. am i the only one running halaven peripherally no port? looking forward to the tee shirts karen. glad you are feeling better. penny weird but i have a good appetite on this drug xeloda i just didn't care towards the end of its' effectiveness.
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soo... what is the scoop on the hair thing? how much do you lose? and how many people have lost hair?
do i need to order a wig?
(i don't think i am going to do miss baldy again.. i'm over the 'be one with the breast cancer look'.)
off to streak my hair while i still have some.
oh.. and btw, i love senna tea for constipation. i buy it from a Chinese grocer under the name slim tea.. you can take a sip, a whole cup or god forbid two.. I hate being irregular and i can be very regular without the runs or explosives
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Mary where do you get the tea in our area??? Any grocery store? My hair is starting to grow back now ...everywhere! Still to thin for me to go with out a wig or scarf. Its growing slowly, but growing none the less. I also was on oxygen due to lung mets, but now I can go anywhere without it. Just praying that it continues to work for all of us.
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I start Halaven tomorrow, this discussion has been invaluable. Thank you everyone!
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eag 1954.. i go to Joonhg Ang Grocery., East of Antioch on Shawnee Mission Parkway. Any oriental grocer has some variation of slim tea.
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I use senna tea sometimes too.... order online (heck, where I live, I have to get a lot of stuff online!) But, I have found it in the big grocery store in Abilene. Many times called "Chinese Diet Tea" because it is a laxative and a 'water pill' sort of thing at the same time.
My hair is still coming out, right after chemo, I can pluck a lot out. Slows down during the 'off week'. I'll still probably be 'bald" (I'll shave my head before I look like a dog with mange!!) in the next 3-4 weeks at this rate. I'm wearing caps and scarves. I have wigs and hubby likes, but they are so hot and itchy! I only wear for short excursions.
Penny... you don't have a port? I have lymphadema and DVT on left side, so I have to have a port to save my veins on my right side... I like it, actually, they can do blood and dye tests and everything through it.
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At food lion it is the "smooth moves" herbal tea. Known in my house as "poo tea". Elka has moved on from it to a morning shake of milk/carnation instant breakfast/miralax. that consistent morning drink has proven to be a solid performer for her.
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Hi all,
I am starting Halaven next week. I'm really glad to find this info so I can (maybe) know what to expect. I have done Taxotere, Adriamyacin, Cytoxan, Abraxane, Avastin, Xeloda, and lastly Navelbein, since I was diagnosed. Obviously, I'm hoping to get some mileage out of the halaven. Good old smooth move tea....at least it doesn't taste too bad. My hair took so long to grow in at all (boo hoo) that I hope this doesn't wipe it completely out. Although bald and living is so much better than hairy and dead, haha.
Annie
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Hi Annie! Hope Halaven helps you too.... it seems to be working on me; I just want something to last more than 5 months.... maybe this one will be the one. I've done all the ones you've done too. Hair is funny.... mine is both growing (can tell by the roots showing, HA!) and falling out. Guess I can just get used to the mangy dog look....lots of scalp showing through. We had a speaker at our recent cancer group meeting; lady has been battling cancer for 10 years, and has been bald 8 times.... her perspective on hair is the same as yours.... better bald than dead and have big hair! LOL
Still working on the t-shirt graphics... trip to Calif. to see my sister took me away for a bit, but it was wonderful. She was adopted (my mom had an oops back in the war years) and we just found each other two years ago. It has been an amazing journey, and it's fun to have a sister, which I never had. I'll get the t-shirt design done soon...!
Off for day 8, cycle 3 chemo today, and 2 units of blood tomorrow... maybe I won't feel so tired by this weekend.
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so.. no Halaven for me after all.. Abraxane is my next cock tail.
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@ Texas Karen - girl you crack me up! The mangy dog look...
It's been a few weeks since I have last posted. Robin is fine. I've just been busy as all get out. I work in a school district and we are back in session, I'm in grad school and it has started up again, my daughter is in every extra curricular event known to man, and I haven't had time to check in.
Like I said Robin is fine and doing so much better. My goodness, she was sooo sick. But so far the chemo (Havalin) is working and the steroids are doing the trick for her respitory system. She's back to work and back to giving me hell so I guess that means she is on the mends!
She has an MRI sometime soon...within the next few weeks. Keep your fingers crossed.
Donese0 -
Donese, so glad Robin is feeling better. Karen glad you were off having fun. I can picture the t shirt my mom/friend went on vacation and all i got was this stupid t shirt with a sea sponge on it. lol. i have awarped sense of humor most days. i am truly looking forward to seeing your designs. i start cycle 3 day 1 tomorrow and think the catch up tv will be to zone on the pbs downtwon abbey. from redbox liked 50-50, ides of march, moneyball, sarah's key, the debt. looking forward to mindless blue crush after watching blue crush 2 on netflix. after 50-50 macaroons anyone?
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This is my week off of Havalen. I wish I felt well enough to actually do something more than laundry (with the help of hubby carrying it). I have had 2 cycles of Havelin after Arixtra stopped working. My CA marker jumped up to over 700 when it had been 400 5 months ago and 55 back in May 2011. Without Avastin I am so worried that my previous brain met will return. It was a miracle to fry that brain tumor last January. I believe the Avastin kept it from coming back since it could cross the blood brain barrier. I'd just hate to go stupider than I already am. Ha Ha Ha.
My lung has been tapped for draining liquid 3 times now. I'm terribly short of breath. Will that get better? I don't know.
At least I don't have as much pain on Havelin!!! Yeah! I, too, need, laughter. I'd be interested in the sea sponge (Havalen) t-shirt. Warm virtual hugs to all. {this is my first post} :-)
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@ hidingfromit: I'm sorry to hear about your lungs. Have you considered getting a catheter? I know just what you wanted to hear. However, my partner Robin had to have a cath put in because of drainage and I will tell you what...it has been so much earlier to handle the fluid. We can drain at home and it is sooo much easier. Fortunately, I think they docs will be taking it out soon. We have not had to drain her in a week and the last time we did it was not enough to measure. I really think it is the Havalen that is helping with the lungs mets and reducing the swelling and inflammation. Here's hoping anyway!
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Had my second round of Halaven last tuesday. This has been my week off but can't seem to shake this fatigue. Not sure if this is normal for it to drag out so long or not but again nothing has been normal for me. Just wondering if I was alone with this or not....and, with the hair issue wondered when to expect the fallout....it bald thing doesn't bother me just like to have an idea of when to expect it... I'm the first Halaven patient my Onc has had.... Thanks for any input at all....{HUGS}
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Welcome alice and hidingfromit, i think i felt the head funny feeling after cycle 1 treatment 2. my head did not hurt as much this time but it is that weird feeling when the hair follicle dies. why not the mustache or armpits oh well. still have enough to do a female comb over lol. look like peter pan with mange. i went from xeloda to halaven with just a week in between. the fatigue was horrible cycle one. talk about naps. cycle 2 better and i'll see what cycle 3 brings. i wish i knew how much energy i would have for a day with a gauge before trying too much and running on fumes, a few times wondering how i would get myself home. my counts never go back to normal so i hate the feeling winded with exertion like stairs. let me know what protocol your onc is doing. i have had no nausea meds. no zofran headaches. alot of us get the weird day3/4 sort flu like. tired,spacey.
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ditto to Alice and Hiding....
I am tired, but, I've found chemo to do that. I nap 4-5 days a week, and am in bed at 10 pm...old fart. My white counts are great, but i get anemic, which makes the fatigue worse. i'm sitting here now in the tranfusion center getting two units of blood.... I'll feel great by the weekend.
Donese; So glad about Robin!! Keep it up.
Apple! Sorry about that, but Abraxane worked good for me... decreased my mets 50%.. just didn't last long (I have a really agressive booger) but lasted 6 months, and I'm grateful. Only bad S/E's were "booger nose" (never had so much mucus in my life!) and taste bud issues. Hoping you do well with out !!
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@ Karen - I think your right about being tired on chemo...I think it is true of just about every chemo cocktail. Robin comes home from work (yes she is still working) takes a nap for a few hours before I get home from work. She manages to have dinner with our daughter, watch a little TV, and then back to bed by 9:00. On the weekends she sleeps in but then has more energy to do things in the afternoons.
In my line of work (I'm an Occupational Therapist), resting is a part of energy conservation. I would recommend it for all of us whether you are a cancer surviver or a caregiver.
Thank you all for being great women and great champions of courage.0 -
Hi Donese, My daughter is studying to be an occupational therapist. i promised her i would live to see her graduate in 2015. Love my new oncologist, she started my line. The joke was on me, i hate steroids so didn't get any, came home, managed to stay awake for about an hour then napped for 2 hours. no wonder people get roid rage. i will not miss the insomnia. glad i decided against going to a movie matinee. i would have been the one snoring in public. in case you haven't seen it please go to pinkwell.org and vote everyday for metavivor. i feel they will make the best use of the money. please pass the info to as many people as you can. hugs from northampton ma penny
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@ Penny- Wow it a small world! Where is your daughter going to school? I'm graduating from graduate school at the end of this year with a masters degree in OT. I'm attending Texas Woman's University. I'm sure you will not only see her graduate but many more things, too.
This Havalen seems to be working for quite a few. Robin's onc says there are many different cocktails to try if this one doesn't do the trick. I sort of hang my hat on that "more cocktails to try". Robin is starting cycle 2 treatment 1 today. Her sister went with her...this should prove to be interesting. Her sister is about as much help as tits on a boar hog (no pun intended). It is my hope that by her sister going with her to treatment that this might wake her sister up enough to make her helpful. Notice I said it was my hope...I don't have a lot of faith in that.
Well my friends, I will talk to you soon.
Donese0 -
My first post...am in my 8th or 9th round of Halaven. Started in July of 2011; my Tumor Marker has been falling like a rock. Have had 2 blips where it went back up 3 points and then went back down again. Pet Scan remarkably better too. Some of my info. may seem a little vague, but then, so am I, "Chemo Fog." I've had most everything out there, starting with Adreamycin in 1995, then remission for 12 years. CA came back in 2008 with mets in lining of right lung and sternum. We were running out of options last year and then in floated the Sea Sponge. My onc is actually talking remission. Never thought I'd hear that word again. All same se's on Halaven. No hair, 3rd time running. Look at bright side, it's easy. Haven't heard anyone complaining about tearing eyes. Will have surgery in few weeks to correct tear duct damage. Eye doc says it was the Taxatere. I think it's the Halaven...I forgive it. Not good to have CA pt. walking around with tears running down cheeks all of the time--depressing. As for fluid in "lining" of lung, had multiple drainings, terrible shortness of breath. Finally, had "Talc Procedure." The surgeon shoots Talc through chest tubes into lining. The Talc causes scarring (not scaring) in the cancer affected areas. Consequently, no room for fluid build-up. Wonderful...no more fluid or SOB. Ask your onc about it. Had heart-lung specialist do procedure. I send him a Christmas card every year. Would like T-Shirt for myself, my onc, my lung surgeon, and the Sea Sponge. "I can be changed by what happens to me. I refuse to be reduced by it." Author, Maya Angelou. Love to all, keep laughing; I don't have to tell you to be strong. Good Luck Hidingfromit. Thank you Paula from Waco. I will pray for you both tonite. OklahomaPaula
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Hey Okla.Paula! I have tear duct problems too... mine started on Abraxane. what's up with that? I'm doing steroid drops first to see if the blockage will break on it's own, but seeing an ocular surgeon on Mar 8... may have to have surgery too. I just tell everyone the tears are "happy tears"...LOL! I'm so glad the sponge is working great for you !!
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Nice to meet you and hear about how the sea sponge has worked for you. Maybe we should get seaweed hair to go with our shirts? Should we boycott sushi? are people eating our sponges relatives? i had the worst dry eyes from xeloda but new onc asked about excessive lacrimation none to report so far other than the intentional cry. back to my new trash forsensic thriller. laughed when pain np and onc thought i should read romance to distract myself. never read the genre and haven't run out of mystery authors yet. enjoy the book thread on this sight. wonder what our sponge eats. grow your own halaven at home in your tank send 89.95 now and we'll throw in a free sea dragon. i better stop, i must be feeling better.
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Penny: you crack me up!!!!!!
Okla-Paula: your story is inspiring....
To my blog friends,
I'm not doing so well this evening. I'm exhausted. I have been working, taking care of my daughter and my Robin, going to grad school, and living. I'm exhausted. No particular thing wrong, but I find myself depressed and feeling crappy. I would like to have a break from life or at least a vacation from life...0 -
Donese, have you requested materials for caregivers from advanced breast cancer. i think they are listed on the mbcn,org website under wellness community maybe/ i ordered excelllent free of charge materials. i don't know what it is like for our caregivers but nuture yourself. the materials spell things out but in one of the besst manners i've seen. hugs, smiles and it's a new month with hopefully lots of chocolate- hearts, caramel nut turtles no sponges although who remembers the molasses sponge candy covered with chocolate, okay a kind of sponge i could go fot.
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Thank you Penny. I'll go look for the resources.
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Penny: You keep me in stitches.... I have lots of stuff growing in my fish tank, since I haven't cleaned it in about 6 mos, but the fish don't seem to mind, but I don't think sponges are there yet.
Donese: It' VERY important, imperative! that you schedule some YOU time... find someone else to take the load for the day and go fishing, or drive in the hill country, go golfing, whatever you enjoy. Robin will totally understand. You will burn out fast if you "try to do it all". You are not superman, neither are we super women, although we like to think we are (LOL). Exercise is important too, but don't know if you can work that into your busy schedule!
All: I read a very inspiring book by Ken Wilber, "Grace and Grit", about his wife's journey through cancer. He was the 'ultimate' caregiver, even giving up his own career, and there was a time when he became a closet alcholic and totally resentful for her and all of it... and she had unknowinghly become totally codependent on him also; it was a bad time for both, but they confronted it and realized that they had to find balance, and worked it out. I have friends who are caregivers for their parents with Alzheimers, and I often see the same 'resentment' building. Don't allow that to happen. We, the cancer patient, don't want any of our loved ones to harm themselves (mentally, physically or spiritually) in their care of us. There are too many other resources out there; just have to ask for help and find it.
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Hey gals,
I might have to switch to Halaven soon. Just wondering what is the longest that any of you have been on this one? I know it is a new drug, but from all I have read it seems to work, but like most of the others, patients end up switching off it after a period of time so wondering who has been on it the longest.
Just curious...thanks for your help!
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Hello my Havalen buddies!
I am better. I had a moment...well more than a moment but I'm better.
Karen- thanks for the book idea. I have been looking at a couple and couldn't decide which one to read and now I do.
As along as we are the book ideas: there is a book about Alzheimer's patience and their travels through each stage of dementia. It is called "Moments of Joy" by Jolene Brackley. This is the best book ever and I feel that it is a good book for any caregiver and puts things in perspective. It is an incredibly easy read! I about read the whole thing in an evening.
Take care my friends,
Donese0
