Halaven - Day 1
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Joining the Halaven group! I just had my first dose today, I liked that there were no premeds, and it was a quick, 5 minute infusion. I'm slowly making my way through the previous posts.
I was on a clinical trial - Abraxane with Tigazumtab - but had moderate progression after my first scans. If I don't see a response to Halaven, I don't have a ton of options, so fingers crossed.0 -
Suze: Get my first dose today too. Praying this bullet will work for awhile. Let's keep in touch here and see what happens/what effects this has on us. I'm running out of options also. This is my 5th chemo in a year.
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Hi Karen - I'm with you on hoping this is our bullet, both of my doctors have seen good results, so I'm keeping my fingers crossed!
So far I have a smidge of nausea, but a small dose of Ativan (0.5 mg) seeme to help. I'm already exhausted from my previous regimen, and am struggling there. My numbers were just at the borderline for a full dose, so my doctor went ahead and gave me one, figuring we can back off a bit next time if need be.
I'm hoping to avoid neuropathy - I never had it with any of the taxanes.
I hope the Halaven treats you well!0 -
The worse side effect for me is fatigue. Other than that no nausea or vomiting. I feel like I have a slight case of the flu without the other physical symptoms. I've been on it since the end of April and my onc advised I'll stay the course as long as it continues to work. I had chemo today and its improved to the point that I dont have to go back until January 5th! I'm hoping that this works for all the ladies that are just beginning. I'm hoping that it also continues to show improvement for me.
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Oh, by the way Suze. I have slight neuropathy. Nothing major and definately not as bad as when I was stage II and had Taxol.
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Karen, it didn't work for me, but so far as the SEs went, it was a breeze compared to abraxane & avastin combo.....about all I had with it was hair loss (not total) constipation big time and some weird muscle spasms and cramps. I will say my prayers that it works for you.
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Thanks Marybe & Elizabeth! I can handle some neuropathy, and I always have constipation on any chemo, so no biggie. LOL Yes, it seems to work great on some; hope I'm one! and Suze too. Mostly love just the 5 minute IV push.... still have 20 mins of decadron and 25 of zophran, but that's ok too. Not like sitting there for 4 hours with the abraxane/avastin.
I'm tired and no appetite tonight, but think I'm still tired from trip to Costa Rica and just getting home yesterday. Maybe I'll sleep in tomorrow...
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Thanks for the input Marybe and Elizabeth! The Abraxane was so easy to tolerate, I was scared to switch! I still have quite a bit of hair, maybe I'll gt to keep it... I already take B vitamins, so I may have to add l-glutamane (sp?) as well.
Karen - I am already on Decadron (trying to wean) so I don't even have to wait for that, or tummy meds. That quick push is definitely nice.
Here's hoping it works *raises alcoholic beverage in salud!*. And get some rest, you lucky woman
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First couple of days after Halaven weren't too bad, but today (day 4) was the pits. Woke up throwing up, diarrhea... don't know if it's the new chemo or a bug. Guess time will tell. Feel totally 'out of it' and disconnected today, can't think, can't do anything. I'll call onc tomorrow if it continues. Maybe it's just the 'bad' day of this treatment. Seems that we get used to a sort of cycle on each of these and get used to a 'bad' day during the week. The Avastin/Abraxane gave me a day of bad body pain around day 6 each week. I just hate feeling this bad; other chemo's haven't been this way. BUT, willing to give it time and see if I can get into the cycle of it.... as long as it WORKS!
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I will be joining the halaven party, can't wait to break out the wigs from my daughter's anime costumes. cried about being bald again but getting over that, curious to know if taste is affected. if it seems to be metallic or like burned tip of tongue. want to go on favorite food outings this week while i still have my buds. i turn 56 on saturday so may need to eat cake and lobster at 54 362/365. it's not. always easy to keep my glass half full but looking forward to those in the halaven boat throwing each other life preservers. thanks and smiles
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i am embarassed can't even get my age right. see what pain meds do , glad i am not in charge of the missile silo combos. any zentanglers on our boards
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TexasKaren..today is about right...I have chemo on Thursday and the first three days are a breeze compared to my 4th, I felt horrible today..I also have the disconnected, surreal type feeling. No nausea or vomiting, just as I've posted before feeling like the flu without those symptoms. I'm accustomed to it now,,,but by all means if you dont feel better call the onc. Sending positive vibes, and hugs that not only you feel better that it works. Penny my taste is definately affected. Not metallic, but nothing tastes good.
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Just checking in with you gals.....the halaven did not affect my taste buds at all, but then again as we all know I do not get normal SEs.....it was the neulasta shot that hit me hard when I was doing halaven and I think taking the antihistamine before helped, but can't swear to it....it could be my body just adjusted to the neulasta, but recall that lst shot of it was rough. Karen and Suz, If you guys could handle the abraxane, you are going to do just fine on this one.....of course than is just my opinion, but I thought Abraxane was the worst. Right now I am doing adriamycin and have only had one dose, but get #2 tomorrow.....am getting a lower dose weekly.....all it has done so far is make me really really sleepy. I think the hair loss should start the end of this week....this will be the 3rd time. Penny, I did not lose all my hair on halaven.....but one thing you will find even though it is tough to lose your hair, it will come back and that gives you something to look forward to. I think using Nioxin shampoo and scalp conditioner helped me.
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If I had to conpare this to Adriamycin, definately not as bad, at least for me. Everyone is different because I feel better today and will progressively get better. No matter how I look at it chemo isnt a walk in the park for me. I'm thankful right now for something that appears to be working.
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I'm on day 5, and I'd have to say my worst was day 3. I actually vomited once, but didn't really feel nauseated - it just came over me quickly, then passed. I do have that disconnected feeling also - which I hate - and the steroids I'm on don't help that. I'm really, really, REALLY tired - like, fall asleep standing at the kitchen counter tired. I also have that metallic/off taste - food tastes so bland, I end up salting the heck out of it, which then bloats me up even more.
But, I can tell I'm on the upswing because I've been having better mornings. I'm not sure I'll be able to get my Wednesday dose - my numbers were borderline for my last dose (I had to be at 100, and was at 94 for one of them, can't remember what exactly needed to be at 100). I may have to wait a few days, which is fine.
I think it might be helping though - I was only able to sleep on my left side due to my shortness of breath issues, but now I can sleep on both sides comfortably. My bloating has also stablilized, and my tummy is softer, not hard as a rock. I'll take it!
Marybe - AC really kicked my butt the first time around, but I was in curative mode at that point so they were hitting me hard. I remember losing my hair by week 3 on that one. I was mostly tired and nauseas - it really hit my WBCs hard, so the Neulasta was very helpful. I hope you continue to do well with the red devil - it is a very good drug when you can tolerate it.
If Halaven brings me a visit from the Stable Boy, I'll take whatever it dishes out!
Susan
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Susan and Elizabeth: I am better today. Maybe day 3-4 is our "BAD" day.... I can live with that. Same reaction as you; all of a sudden, just wanted to vomit, just once. But felt like absolute crap all day.
My taste is still screwed from Av/Ab, so don't know if it will continue.. only been off those for 2 weeks. Hoping. Yes, tired, But all chemos' fatigue me some. DH laughs when I go to bed at 9 pm. Was supposed to lose hair on Av/Ab too, but it's still hanging in there, thin, but there. "Booger nose" from the abraxane is getting better ! YEA! Hated having to blow my nose all day and night!!! And that once a week strange day of "intense pain all over' while on the av/ab hasn't shown up. I'll trade one day of feeling totally crappy/maybe throwing up for that terrible pain day!
Marybe: Hang in there... low dose Adriamycin should be very good for you...!! I'm praying.
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I am soooo tired I can barely stand it.....got off work a little early and decided I would go look at shirts for my father....the selection was overwhelming and I was just sort of wandering around yawning. I seem to feel the need to reward myself with food whenever I do a new treatments so I stopped at Skyline and got two cheese coneys on the way home. For those of you who are not familiar with Cincinnati, they are famous for their chili and most of these chilli places, have coneys which are so covered with cheese,( providing you get the cheese one of course) that you can barely see the hotdog and bun. Nothing wrong with my appetite. It took almost a month off the abraxane for my taste to get back to normal and the booger nose is from the avastin....that was the part I disliked the most about avastin, the stuff that came out of my nose, but I did not like the watering eyes either. I think you will find halaven easy compared to the A/A combo. I certainly never had an vomiting with halaven....didn't have much of anything with it other than thinning hair and constipation. With this adriamycin, the only problem I am having so far is the extreme fatigue and tomorrow I get it again....I am thinking maybe I am anemic by now since my white count was only 4. when they started me on it. It's amazing how we all have such different SEs.
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Marybe, praying this chemo works for you and knocks the crap out of those mets. With this drug, did you have to have a MUGA scan before you started your chemo? i hated the SE's of the Avastin too. I still have lots of nasal congestion and drainage ever since I did chemo and onto tamoxifen. I am always blowing my nose or having a runny nose. i really hate that. I think my nasal passages were destroyed from the 3 different chemo's I did. LOL. You are my inspiration! Wishing all you ladies doing havalen great success and stability. Dawn
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day 1 2.25 mg 8 hours ago, waiting for the party to start. is neulasta pretty much a given on day 9. i will only do nepogen the pain was a lot less for me than the big#####dose at once. told no sudafed or any related products because of the qt elongation with heart also some anitbiotics can cause problems as well hoping to extent and reach stable at least for a few months to get a quick trip to florida for sunshine and a beach walk with my daughter. the onc has me so frightened that something could change fast so my 19 daughter will be my proxy when my college friend of over 30 years is out of the country. my dental hygenist said no to crest prohealth rinse floss toothpaste due to disrupting the good/bad bacteria if our counts get low. biotene pbf green rinse and toothpaste are my favorites, i have dry mouth from other meds. maybe we should have a traveling halaven shirt like the woman who started the jeans. maybe the shirt could have a facebook page. i do not have a facebook page but now that winterbreak is here. i will guilt my kids into doing it for my birthday. cyeber hugs and smiles, hope your new tx holds you. Penny
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I'm on day 5 of my second week, and definitely feeling more effects from the Halaven. I am more prone to vomiting, without much warning, but the worst is the heartburn, ugh. I wake up in the middle of the night with it, and also the morning. I've been using Zantac, but think I'll have to go to Prilosec. I also have had to start taking Ativan for the mild nausea. Thankfully my off week is coming... I think I was hoping this drug would be like Abraxane was for me, with almost no SEs. Ah well, it is chemo afterall, and if it beats back the cancer for awhile, I'll take it.
I haven't had to have any Neulasta or Neupogen, but it is just my first cycle. But my numbers are holding up well, so I'm hoping I can hold off on the shots for a bit.
Hope everyone else is tolerating the Halaven well!
Susan
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Susan: So sorry you've felt bad! I was prepared for my second round, the "out of the blue' vomiting, but I've been doing pretty well. Not much appetite the first three days, but this was day 4 of second dose, and my appetite came back (still waiting for the taste buds to recouperate from Abraxane), and the tiredness hasn't really set in yet. Could be I'm pumped up for the holidays; we spent all weekend with all our kids and next weekend is a big road trip to visit friends. My counts were good too. I'm on Protonix, 2 x day, and I don't have any heartburn, but boy I did before them. Have you tried them? Worked better than Acifex, zantac, etc. Again, hope you can get a handle on that !! I'll be praying for you and the tummy!! We are strong and we can handle s/e's, but it sure is nicer when they aren't around !!! LOL
Pennycats: Let us know how you do.... we're all starting it kind of together here and it's nice to compare what's happening. I am the first of only 2 patients at my cancer center on the drug; the other lady started the same day as me, so we have no one to talk to about it. It's such a blessing to be on this forum to share !!
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susan sorry to hear about the se from day 8 treatment; mine is thursday and maybe will keep the ativan handy to enjoy christmas dinner. my appetite is not huge other than when on the steroid high. day 4 i crashed and just puttered at home but the previous day was my birthday. when i stop consuming lots of dark chocolate I either got a cafffeine withdrawal ha or halaven ha. the neupogen has been ordered so i'll have it if needed. My fatigue is better today. I have been on nexium and it works for me so much better than the otc or generics. the problem is ins. coverage. I still like the idea of a traveling halaven tee shirt. if there are any takers let me know and i will start one after the holidays. likewise karen i appreciate this board for us to communicate. peace,love and healing and joy that this season brings to us. Penny
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Penny if you guys decide to do the tshirt let me know. I think day 3-4 is the day everybody starts to crash. My doctor gave me ativan...haven't had to take it yet. If I remember correctly is it for anxiety??? Wow, shame..I cannot remember.
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hi, ativan is used for anxiety or as my new mets(10 yr) metavivor fiend calls them the stop me crying pill. it is also used for nausea will work for the "mild" chemo or for me to try because of the gi tract mets. my insurer also classifies drobinalol/marinol as an antiemitic. i have not seen posts on medical marijuana on these boards, haven't tried mine yet but the generic copay is much more appealing than the high copay others and i don't want to revisit the zofran ha. I may have missed because this is such a long thread. Are you on Halaven? I have a bright green metavivor t shirt or could find an offbeat noncancer related one to start. any preference?
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Yep Penny. I am...I had a break this month. Had chemo two weeks ago and dont go back until 1/5/ 12 as my day 1. I've had a good deal of improvement with it. My next scan is March 12', so I'm hoping it continues..I asked my onc for a break...just wanted to feel good or at least ok for the holidays.
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Karen - thanks for the suggestion on Protonix - I'll have to give that a try! So far, if I take the Zantac twice a day, I do okay. I have a feeling though it will only get worse, as heartburn was my one really bad SE the first time I did chemo. So I'm sure I will need something different down the road.
I'm definitely on my upswing, so days 3-5 will be the baddies it looks like. But I was still functional, so I'll take that. My cough is showing signs of improvement, which is great! I don't have to take as much morphine (it suppresses my cough), so I'm not as tired. My doctor also gave me Ritalin, which has helped with my energy levels. Never thought I'd be on that, lol!
eag - I use Ativan for nausea in small doses - 0.5 mg. I also use it to help sleep at night (1 mg). So either way works. I find that if I put the tablet under my tongue, it works faster for the nausea.
I'm getting an extra 2 days off on my "off week" because we are out of town for Christmas, so I'm happy I'll be feeling my best for the holiday.
I hope everyone is doing well, and that Halaven is kicking butt! I know my MO loves this drug, and thinks it will buy me a good chunk of time. I won't be getting any scans soon - we will go by my tumor markers and SEs for now - but I'm feeling pretty positive.
Susan
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Suze: Great.... after reading your post about heartburn, I had it for a day and night! LOL Seriously, I was so constipated (reg. from the chemo PLUS traveling the weekend) that was the problem. I am very tired; but, all the holiday running around I'm sure isn't helping. Had MRI of eye/brain today; there is a lump in my eye socket we're not sure what it is, but I'm believing it's a cyst from a blocked tear duct, which I also have. I hate all these little 'things' that pop up and we have to check them out (my onc is very pro-active) but you feel like a darned ol' hypochondriac if you mention something..,.. URGH! BUT, we have to keep on top of things too to catch something early.
Will probably be my last post before holidays. I am praying that all my sisters in this have most wonderful times with family and loved ones, that everyone feels good and that blessings come to all of us !! MERRY CHRISTMAS !!
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Happy Halaven holidays. I had to post something because i accidentally deleted from my favorites. We'll tee shirt in2012
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Ok, started 2nd cycle, day 1. Doing pretty good. Blood counts staying good, Hct down a little, but I tend to need blood every 8-10 weeks lately. I suspect I'll get a couple more units in a couple of weeks when it gets down to 8. Feeling fairly well; no worse than any other chemo. Had a bad 'nadir' day last week, but I think we all get those, when it just all falls down for awile and you can't even get out of bed; exhausted feeling, can't function, etc.
My worst problem now is a plumbing issue.... with my HOUSE! LOL if that's all that life can hand me, I'm doin' just fine!!
I am wishing all of you a very blessed New Year. I pray for strength, courage, and most of all, God's healing light to shine through all of you. Even though we've never met, or are likely to, we all have a deeper connection than we know, and I am blessed every day to have found you.
LET'S KICK BUTT AND CANCER IN 2012 !!
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Happy New Year Karen! Hoping you continue to feel good. I don't go back for my next round until the 12th of January and beleive me I'm enjoying the break! I'm with you..praying for strength and courage through it all. Please keep postiing how you feel as I'm hoping you make it through the 4th day fatigue ok.
Elizabeth
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