Halaven - Day 1
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Thanks Marybe! I'm getting neupogen shots 3 days a week. Hope Xeloda keeps working for you too. I think that is next on my list if Halaven isn't doing the trick. Good thing there are still choices! Take care.
Lorelei0 -
Hi everybody, I have not started halavan yet, but gone trough all the chemosynthesis out there, but abraxine and halavah and ixempra, with no respond. My uncologist pushes more for ixempra. I don't know why it is harder on the body than halavan. I am so grateful for this chat room i don't feel alone anymore. My tumors in the liver are 12 cm in the left lobe and 10 cm in the right lobe, have no clue how my liver is still functioning but very grateful. Marybe what is SSDI? Hope it's all well, I had good results with zeloda and the side effects are manageable with Vit B6 and L Lycine. I will keep reading on. Good luck everyone.
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This may be my next treatment if Abraxane/Avastin fails down the road (so far, so good, on 3rd cycle, but won't get scans for another cycle). I am reading all the Halaven info closely... thanks for sharing.
Funny how all these treatments affect each of us differently... As the doctors I work for say, "there is no longer any "cookie cutter" medicine"; everything needs to be individualized.
Wishing everyone a fun and safe Labor Day weekend !! We who are laboring with this disease deserve a real good time this weekend !!
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oops... did something wrong; ignore this
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Jaleh, the Ixempra IS very hard. Are you getting good results on it? Hope you're able to find something easier that will kick cancer butt....Sending hugs, Paula
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I am not on ixempra or halavan, sorry, but the doctor decided to put me on Hormone blocker for a month with no chemo. It is scary since I feel the liver and bone mets are growing and the pain is worst. I need to get a second opinion. Any thoughts on hormone blocker working with mets in liver so big? what do you think ladies? Have a wonderful labor day weekend. >
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Jaleh, Social Security Disability....I may not have used the correct abbrevaition. Have you done the hormonal route before? They kept my liver mets stable, but they were small at the time.
I talked to a woman last week who had done Ixempra and did not think it was so bad. It is so difficult to predict what SEs we will get. Today I got my 2nd herceptin and I swear it makes me feel like my lips and mouth go numb and I get indigestion really bad, but they just say oh that should not be happeneing with herceptin. I am on my 2nd round of Xeloda...today is day 9 so 5 more to go and then I get a week off. So far so good....sometimes my hands look red, but no peeling or blistering yet.
The hair I lost with halaven is growing back but then the nurse tells me today the being on Xeloda may slow down the growth process!!! No one told me anything about hair and Xeloda before! I love the way they don't tell you things,
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Hi Marybe, the Vit B6 and L Lycine helped me a lot with Zeloda, I had no SE. By the way my son wants to know if you exercise? And have you heard of LDN? He researched it and wants me to go on it. The alternative doctors like it, but my oncologist says he does not know if it helps or not. you should talk to your oncologist about B6 and L Lycine.
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ME? EXERCISE? Last time I did that was getting ready for a class reunion. I am quite active, do yard work, climb around on ladders and strip wallpaper and paint, walk the dogs, but real exercises, No. Yesterday the PA told me to be sure to get anything other than just regular vitamins approved by onco....said sometimes anti-oxidants interfer with the chemo. What does LDN stand for?
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My onc says the same about lots of supplements... they're not sure they don't interfere with the chemo's efficacy. There are few studies out there. I'd rather get the full chemo effect than some partial one. Hit me with your best shot !!
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Decisions...decisions. I've been on Halaven since June and it seems to be doing the trick. Problem is my neuropathy has gone crazy and my legs are feeling it. Numb up to my knees and have fallen three times but no injury. Also running low grade fevers at night. Onc on vacation this week so will have to decide if I want to skip a treatment this week and talk to him about it next week. QOL sucks right now. So tired I can sleep at the drop of a hat and don't want to do much with these noodle legs. Getting close to running out of chemo choices. Getting tired of chemo. AI's didn't work for me and cancer too aggressive for a chemo break. Stuck between a rock and a hard place right now with many things I still want to do. Maybe a different chemo will help.
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Have you tried L-glutamine for the neuropathy? I was also numb to my knees and tried Neurotin but hated the side effects. The L-glutamine was great and took care of most of the problem with no issues. I found Halavan to be a pain in the rear. My doctor thought it would be an easy drug, and I didn't have very intense side effects (other than the neuropathy). However, I never felt really good. I was always achy and tired. Hang in there!
Susan0 -
Thanks Susan I will try that. They just told me today to get a came. Another fun thing to learn to accept. I'm very tired too. Nap all the time. Kind of going I'm almost done with this but hate to wish that as I run out of chemo to try.
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Well I have to stop taking Halaven. My neuropathy is over the top and has gone up to my knees. If I don't stop the chemo it will continue to get worse and I will be in a wheelchair. So I go in today to see what's the next chemo of the month. The three I know of that I haven't had yet is Xeloda, Ixempra and Navelbine. The list is shrinking.
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have you heard of WSN Nerve Support Formula? It helps neuropathy and has special form and high doses of Vit B1, B2, B6, B12, Folic acid (100mcg) and D3 (250 IU). if you call them they will mail u the information. I just ordered it on line. it is worth looking into it.
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Hi Marybe, LDN stands for Low Dose Naltrexone, if you search LDN there is a link for MS and Cancer. May be your oncologist knows. it is used in low dose up to 4.5 for Cancer, Chron's and MS. God knows but I try to get as much info as possible out side chemo options so far chemo did not help me, but i will not give up. My son takes it for Chron's and it is helping him. I don't know and wish they would study more these inexpensive therapies more. I copied and pasted from the link, LDN helps:
- By inducing increases of metenkephalin (an endorphin produced in large amounts in the adrenal medulla) and beta endorphin in the blood stream;
- By inducing an increase in the number and density of opiate receptors on the tumor cell membranes, thereby making them more responsive to the growth-inhibiting effects of the already-present levels of endorphins, which induce apoptosis (cell death) in the cancer cells; and
- By increasing the natural killer (NK) cell numbers and NK cell activity and lymphocyte activated CD8 numbers, which are quite responsive to increased levels of endorphins.1 (abstract)
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After having been on Abraxane/Avastin for the past 12 months I have now had slight progression so I am switching to Halaven beginning this Monday. This thread has been very helpful with lots of information on this drug. I am hoping to get my sense of taste back as well as no longer having lifting fingernails and watery eyes. Has anyone had nail problems on this treatment? I know some have mentioned issues with taste but I am hoping that will at least improve a little as right now most foods are just so bland! Fruits and veggies taste ok so I suppose that's a good thing. Hoping Halaven will at least not be so harsh on the sense of taste.
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Thanks for the info Jaleh. Ngarcia: had a lack of appetite so food taste was not an issue. It did take a few days after chemo to want to eat and I was pretty hung up on mashed potatoes because they would fill me up for the day and tasted normal. Oh the watery eyes sucked for me but went away after three months on this. That was a pain. My toenails got loose but didn't fall off and fingernails were fine. Good luck to you!!
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ngarcia:
I was on this drug for 2 1/2 cycles, off on Doxil, and I'm back completing a cycle of this Monday. I'm on reduced dosages but have never had a problem with food or my fingernails on this one. I was on Xeloda/Ixempra for two years and had to fight to hang onto 7 fingernails but managed to do it. My biggest problem on this one has been the constipation - really bad for me.
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Buttercup, how did you tolerate Doxil?
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Very easy but it did not work for me. What I really like was no SE's and it's once a month - that was the best part - one session in four weeks, I felt good, and I had time off in between. I had 3 cycles - 3 months on this one.
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Hi fellow fighters, I just had my first Halavan and after 3 hours I am starting to have funny feelings in my finger tips. Hugs and cheers to all of u strong ladies.
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Paula we haven't heard from u since sep 2. Is everything ok?
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Thank you for the replies, I had my first dose yesterday and everything seems good so far. I did have a bit of a flushed face this evening, not sure what that is about but otherwise things are going good so far.
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Bump for Idlevy.
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Jaleh, Thanks for checking on me! I haven't been on this thread too much lately (as sadly, the Halaven wasn't my magic bullet). Was recently on Taxotere and have been dealing with some pretty major side effects from that bugger. But it did shrink things, so I guess I'll take the SEs to get the results. Had to leave the Taxotere because of the SEs and now am hoping Faslodex will work.
Dang, Buttercup, ixempra and xeloda for two years? Those were BEARS for me as far as side effects. I'm so impressed!
Hugs to all of you, whether new to Halaven (crossing fingers it works great) or having to switch onto something else (dang, but this is supposed to be the one, right?).... Paula
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Paula, Sorry for your nasty Se's. I had some from Taxol (cardiac/respiratory rx and EMS was called),Abraxane and a little from Gemzar. I hope the Faslodex works for you and makes you stable or NED. I am doing Tamoxifen and hope I have a long road on that drug because I dread doing chemo again.Sigh...Can you go back to Taxotere when the SE's get better sincce it worked? I did Gemzar for 8 months and became stable but my onc said the time frame before progression was the average 8 months with Gemzar. Sending you cyber hugs because you are always so cheerful and kind no matter what you have thrown your way. Dawn Marybeth and you are real warriors!!!!
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oops Marybe, sorry, I have left over chemo brain. Today I put the brown sugar in the recycle bin because I was thinking of the things I had to recycle on the kitchen counter and was cooking. Dawn.
My DH found it later in the day when he put the recycle stuff out for me.
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Bump for a Halaven newbie.
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WELL.... I join the Halaven group tomorrow also !!! After 7 months of success with Abraxane and Avastin, with mimimal side effects, it has stopped working and my cancer is growing again. POOP. That makes 5 chemo's down. I am re-reading all these halaven posts.... what to look forward to! haha.
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