Halaven - Day 1
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When they gave it to me bolus, I had instant neuropathy. That went away in a few days. When they infused it, I didn't get any neuropathy, but I did get more heartburn and cramps. That may be just because it's #2.
Oh well, I just hope it works. The only chemo that's worked for me is Navelbine and it wasn't perfect.
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Ann, I got Halaven by push. Got terrible heartburn; took Prilosec for that (like Alesta said--the kind where you think "Am I having a heart attack?"). When I got my first Halaven treatment, it was 100% dosage. That was too much for me to handle. WBC tanked; got dehydrated because I couldn't eat or drink--everything tasted bad and I got a thrush like SE in my mouth; and fever. They reduced my dose to 80%; it still worked and the side effects were more manageable.
Really hoping this works for you, Ann!
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Cool, When I was taking abraxane despite being allergic, one of the remedies was slowing the drip. Somehow, it makes it easier for your body. Maybe the doctor can ask them to slow the drip. Just a thought.
Alesta, so glad to read your post. Sorry about the side effects, sound dreadful . I think the weaker our bodies get, the worse those stupid mouth sores get. I had mouth sores yesterday from xcheva. Makes no sense but there they were . I'm happy to read about the lack of ascites and hoping that you get the good results some of the others are getting.
Doctor says if I need a new chemo, I should go for Halavan. I'm pretty scared of it. KLo, you say you aren't strong, but I think all of you are!
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I did drop to 80% and it was much easier and I think just as effective.
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I've really not had a terrible time on any chemo. Except for fatigue and a bit of heartburn here and there, none have been terrible. None have worked either - I wonder if that's a correlation?
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Where is the thread where we talked about ritalin? Here? My doctor has prescribed it so I need to go pick it up. The problem is getting out of freaking bed to go get it. I sleep until noon now.
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Big questions for you Halevan ladies: My mom has been thru 2 rounds. The first round markers stablilized and the second they went up. All of her white cell counts have been good so no neupogin, thank God. Her liver numbers are good. She says she is feeling really good. I know we can't really know without scans (waiting for her to finish 3rd round) but I havent heard her say shes feeling good and btw acting good in quite a while. Is it possible that in spite of numbers this stuff is working? This is her fourth chemo. Is she running out? Have any of you gone back and forth between chemo and hormonals with any success? Sorry for the many questions.
To Cool- My mom has seemed to be out of breath a few times, which is unusual for her, when she started Halevan. Also she gets hers as a push.
To Alesta- Someone on another thread said Valtrex for mouth sores. Maybe you can aske your onc.
Thanks again. Mary
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Yea, we have talked about Ritalin here. I start with a 5 mg tab, take 1/4 to 1/2 after eating brkfast. Then small amounts up to 4-5 PM. Occasionally I go to the second 5 Mg tab for a bit more.
Pal Care Specialist said, if you skip a day it can be like skipping routine heavy coffee drinking, feeling worse.
I like it it feels natural to me, just like the old me.
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Ann, I bumped the Ritalin thread for you.
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Hey Heavenlies, I hope you are doing relatively well. If I may say so, I had a good week. MO said I can take an extra week off now and then. No scans til after Xmas. My new Physical Therpist kneaded the rotator tear pain clean out of my shoulder.
When nap time comes, I must curl into the fetal positiion and be left alone until the batteries recharge. But in between, I think this sea-sponge microtubule thingy Eribulin is working.
Hope to hear good things from yall. Can we track down Eag.... Apple are you still on Halaven? let us hear , guys.
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K-Lo, I have been off of Halaven for a bit over a month. When I got my tumor marker results yesterday, I was expecting them to have risen. But no! They went from 134 to 112. Not a big drop, but still a drop, and my markers are very accurate for me. Guess the Halaven was continuing to work during that time. I just started Tamoxifen this week. Hoping it will hold things stable. If not, I can go back on Halaven if I need too. Thankful that the Halaven worked so well for me.
I'm so happy the PT was able to help with your shoulder pain!
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My last scan showed that my bone mets are stable and my big lesion on my liver shrunk quite a bit, but there were new lesions on my liver. My tumor markers have been slowly rising so the switched me this week. I was really beginning to enjoy the Halaven and Ritilan. They are also taking me off of arimidex. Now I'll get Falsodex (who doesn't need a few more shots in the fanny?). And I'll be doing the per/herc/taxotere. There goes my hair.
Anyway, I hope this continues to work for you guys. I really liked it.0 -
I am not struggling with halaven now, I think the ritalin really helped. It's become just another chemo. It remains to be seen if it's effective. My shortness of breath is not pleasant and I can definitely feel that tumor burning in my liver now, not great signs. I also have pretty bad back pain but I do think that is cumulative from all my chemos.
It's been easy on my white count and reds too. So, I am fine with it.
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Good stories all around!
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Hello Halaven Fighters,
I have just read through all your posts concerning your experiences with Halaven. I really appreciate all the information that you have shared. I have had 5 rounds of Halaven and have experienced much of the same side effects that each of you have discussed. Nueropathy, nausea and fatigue have been the side effects that love to knock me down. I have been on 5 different chemos since late 2011. I thought the extraordinary fatigue was from all the previous chemos so it is good to know that Halaven has had some impact on my tiredness.
I will finally get scans on November 12 and learn of the results on November 14. If Halaven hasn't made any headway with the cancer, my onc feels that the cancer is now resistant to the types of chemos that are available. Even though I knew that this would most likely happen at some point, I did find it hard to hear.
I have been Stage IV out the gate for 15 years. I know I have had a good run but I'm not ready to stop fighting. I am saying this on a day that I have felt fairly good. There are days when I am so tired I do not want to move and I think what kind of life is this. I never say those words to anyone but it feels cathartic to type them.
Is anyone doing any complimentary treatments such as Reiki, energy balancing, accupuncture etc.? I was trying Reiki but honestly, the fatigue just makes it so hard for me to go anywhere. I was also not really feeling much of anything and the cost was bothering me. Let me know if anyone is doing anything that makes them feel better.
Thank you for letting me vent. I pray that all of you will get a miracle.
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wow, thats a long time. I dont know what to say to help. I always think Im in controlbut I can see myself in the same predicament. Not ready......
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I was on Taxotere and Cytoxan at the beginning of the year, then I was NED in March. New PET CT in October shows reoccurance and new mets, so they are putting me back into Chemo but this time on Halaven.
Any tips for a newbie starting Halaven after Thanksgiving?
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I am so happy to hear that many of you have had positive results with Halaven. Last August my doctor tried to put me on it. I had one dose and ended up in the hospital for two weeks. It also turned me into a temporary diabetic but then as the Halaven wore off, the diabetes disappeared. I can say that the one dose did help me for my tumor markers were zero for several months. Unfortunately now I have to get back on some kind of aggressive treatment since the ugly cancer has again reared its head and the tumor markers have escalated.
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Does anyone know if there are any foods or OTC meds that conflict with Halaven's effectiveness?
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KARA.....Nope. Sounds like a stretch to me. Of course, they always say eat what you feel like if you have nausea. I just watched a youtube lecture (http://www.youtube.com/watch?v=JPe4HpqkWXY) about Halaven, they say the only side effect is neutropenia, (Hello, I'm 9.8 this week after a week off!) and a little bit of neuropathy.
American Bedu.....Its so weird, I felt like Doxil was going to kill me, like a sick murderer on Law and Order, Major Case...... and many people do fine on it. Now I'm sailing, in murky, sluggish, leech-filled water, but sailing, on Halaven.
Way to hang in there, RJ.
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I was never sick on Halaven. My fingers were number and I slept 20 hours on the 3rd day, but that was it. I really enjoyed my Halaven.
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K-Lo and SpamGirl, thanks for your input. The change in drugs has caught my by surprise so I am trying to get myself prepared for the new treatment. I want to do all that I can to let the drug work its best.
I just hope it is better than the TC.0 -
How's your hair doing, Halaven women? Mine seems to be stuck in a short tight curl, especially at the bottom, back. Better than none for sure. I had low=lights put in which softens the gray, but I really cannot see growth. hmmm
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RJ, 15 years is a long time! I know you aren't ready to hear those words - maybe now it's time to check into a clinical trial or something?
My hair is growing in from the Abraxane. I never lost it all, it just thinned. I had enough so that I had bangs and could wear thick headbands or scarves and nobody would know - I had the male pattern baldness on top and sides.
But, that is all filled in now that I'm on Halaven. I have lashes and brows too. I wouldnt' say my hair is growing fast but it is definitely getting thick and normal looking again. Except, I had curly hair and it's been straight since the first chemo. Oh well. 0 -
So you did not lose your hair on Halaven? I start on it next week and I was going to shave my head to get ready.
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Don't shave your head! I lost some hair on Abraxane (not all of it, it just thinned) and on Halaven it's all growing in, thick and full. My eyelashes and brows are back and I can wear mascara now!
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Really? That is great news. On the Taxotere I lost it all. Thanks for sharing that. Might just get a close cut.
We're there any foods or things to avoid when you were on the Halaven? Things that conflict with the meds doing its job?0 -
I lost my hair in BIG clumps after the first round. I went ahead and shaved what was left because it was a lifeless mess. I also have lost my eyebrows and eyelashes again.
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My hair is there. I look like Christopher Walken... its standing up on the top.
Bought Latisse for eyebrows but don't know if i have the energy to apply it every day...........
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All of my hair fell out on the first few treatments and then it started to grow right back in.
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