Navigating Navelbine
Comments
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Learnin: I think she means Herceptin.
Tiger: The ony pre-meds I get is Zofran.
Chele: Glad you had a good vacation!! Thanks for all the info!! I'm sorry that your xray showed progresssion. So you'll get scans get the results of those on the 14th? Sending good vibes your way as you wait!! HUGS!
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Learning- yes we sometimes nickname Herceptin Vitamin H
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Lynn, I don't know if I'll get scans or not. For some reason I just don't care. Odd, huh? I've been playing this game just long enough to get bored with it.
I'm pretty sure my oncologist is on vacation for the next couple of weeks. Maybe he'll call when he gets back. It would be nice to get the scans done and the results back before my visit with him.
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I have been on it, once a week since the begining of June with no breaks. It is not bad but boy, am I tired! Onc wants me to continue through September. Anyone else not getting a break?
I am happy to report that my hair is filling in, finally!
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Vickib: I'm not getting a break till we scan again. 12 weeks, every week, no breaks. If the scans show it's working after the 12 weeks, then he said we'd go to an every other week schedule.
Great to hear about your hair! I keep getting this tingling sort of feeling on my scalp so I keep worrying it's going to fall out, but so far *knock on wood* it is firmly staying put!!
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Hi Lynn - You are the only other person I have seen on a weekly schedule. Heck, if it is working, I would would have no problem staying on it forever but I would like a break here and there.
My hair was extremely thin from the Taxotere, I had several bald spots and only a couple of eyebrows and lashes but the spots are filling in and my lashes and brows are starting grow as well. Of course the fur all over my face came in better than anything else! Knocking on wood as well that your hair stays! I disliked the lack of lashes and brows more than anything because I looked sickley.
Thanks for starting this and I hope all of us get great results!
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Chele: That would be nice to have the scans already done before your next visit with him. I hope that works out for you!!
Vicki: I would love to stay on it long-term if it's working too! I just keep telling myself that if I can make it through this first 12 weeks with no breaks, that the every other week schedule will be much more tolerable. I know what you mean -- I missed my hair lots, but I think I missed my eyelashes most. Hope yours continues to fill in!!
I've started noticing a little tingling in my fingers so I got some L-Glutamine this weekend. Does anyone know how long till it starts working?
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I've just been taken off navelbine. I had it for a few months before my mastectomy and then resumed it February. From the 4 th cycle my White blood cells were struggling. 1.0 hovering thereabouts until a few weeks ago. I began cycle 7 and it knocked my count to 0.32. Iv antibiotics for a week and hospital for that time too. I took my treatment on Friday and had got used to temperature spikes but over the weekend they peaked at 39.2 c. I hadn't realised that you don't have the usual symptoms of fever because your body can't make them. I didn't realise how ill I was. 8-(. Don't ignore a raised temp is my advise. My hair is coming out too. Hopefully that will stop soon. I see onc on Thursday to see what he wants to do to me next. I'm just a little bit frightened as hospital traumatised me and I still haven't recovered my appetite. Sorry to moan.
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Can I join the navelbine bus. Had my first infusion today. Had steroids first and I haven't been able to stop eating all day . This is not good! I also felt fairly sick on my way home from the hospital but I took an anti sickness and don't feel so bad now
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Also sorry cromercrab60 that you are feeling down. Moan away, we were here for u.
Thanks for the advise on raised temp, mine has been up and down all day.0 -
Cromercrab: You go right ahead and moan! This is the place for it! Sorry you had to be hospitalized for low counts too! They told me about the fever thing and how you can't see normal signs of infection, so I've been checking mine several times a day. I do notice some flucuation, but nothing too high yet, thank goodness.
Katie: Welcome aboard!! Can you opt out of the steroids? Mine gives me a choice - I can have them if I want them, but I said no, so all I get is Zofran as a pre-meds. I'm so glad the anti-nausea meds worked quickly for you! Please keep us posted on how you are doing!
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Lynn - thanks for starting this thread. Very helpful. For example - Got my first dose today. I didn't remember about checking temp until I checked this site.
BTW - They didnt give me any premeds. No nausea yet - touch wood.0 -
Watch out for those steroids. I gained 40# on them. I can't imagine how much money I spent on food.
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Yay! I'm so glad there is a thread on Navelbine. I was just informed today that this will be my next drug of choice. I'm just getting off of my 7 month stretch with Halaven, but now it's time to try something new as my mets are increasing. Boo hoo. I really loved my gentle Halaven. But it looks like the SE of Navelbine are pretty minor and manageable! I'm so glad. I will be starting on the 22nd, because of a vacation and so I can also recover from the Gamma Knife I just had yesterday. I always try to do some research on each new drug, so I'm glad and grateful for this thread. I will be checking in regularly. More power to all of you!!
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Welcome, deadmanskipping. I went over and checked your blog out. Love that wall graphic in your basement reno! What is the story behind your user name?
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Starting Navelbine next week after progression on Ixempra, xeloda, and abraxane. I really need this one to work for me. Not worried about side effects I just need to get this mobster under control again!
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Welcome Elizabeth and Kita!
Elizabeth: I'm so glad you're going to get a vacation in before you start the new treatment.
Kita: I hope it kicks cancer butt for you!!
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Hello ladies: I am new to this forum. I started Navelbine on June 25. The only side effect was a choking feeling coming up like you can't swallow something. It is weird. I have discovered that Maalox stops that. It has something to do with gas I guess. This medicine makes me have gas. Other than that, I haven't noticed anything much. I start feeling better by the afternoon, and the next day, I feel pretty normal. I notice a little fatigue on the day after the treatment. I am one day a week on for two weeks, and then two weeks later I have another treatment with the Herceptin, the Herceptin is every 3 weeks. I also receive an Xgeva shot to strengthen bones once a month. Anyone else out there have this regimen? Everyone is different. I have not lost any hair, but the constipation is always there after the treatment, but I deal with that and get it going. I find the plant based foods, whole grains, and good ol' southern pinto beans with cornbread does the trick. I have heard good positive news about Navelbine, my mets were small, so I am hoping for remission...I hope all you have remission, healing and good news...
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I just saw this post as I haven't been on this site for awhile. I have been on Navelbine since Feb 2010. My schedule is 3 weeks of treatment and one week off. It is working well for me. Lynn I did lose my hair initially when I started Navelbine. I was trying to remember how long it was before it started coming out. I think that it did after about a month of treatments. The good thing though is that it grew back in quite rapidly as compared to how long it took to get my hair back when I had taxotere 10 years ago. I hope that Navelbine works well for everyone that is starting it. My tumor markers just went up very slightly about 1 month ago. They are in the 90 ish range. I'm sorry I don't remember which one of the tumor marker tests the oncologist did. My tumor markers have been in the 70ish range for the past couple of years. I know that this is a minimal jump and I am waiting to see what the next tumor marker test shows.
I had a thoracentesis to drain my pleural fluid in Jan 2010 and have not needed another one since that time. That is due to the help of Navelbine. I do have peripheral neuropathy in my fingers and toes. I take vitamin b6 for this. I also find that my feet feelf better when I walk regularly.
I have significant problems with constipation. I take meds for this but find that they take a few days to work. That is a big difference for me as before Navelbine constipation was never an issue.
My blood counts are on the low side of normal but I have only had the Navelbine held once in 2 1/2 years for low blood counts.
I haven't had any scans for awhile but my bone mets pain is staying well controlled on the same dose of pain meds for the last year and a half.
Good luck to all of the people on Navelbine. I hope that it works well for all of us for a very long time.
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Aurwhe - thanks for posting - wow - 2 1/2 years and counting! That's encouraging to know it is even possible!
I went for my second dose this week - held due to low WBC count. Try again next week at lower dose.0 -
I go for my first dose of navelbine today. Oh how I wish I could get 2 years or more on it! That would sure buy me done time! Wishing everyone else luck as well!
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Sissyvonvon: That IS a werid SE, glad the Maalox was able to help! It gives me gas too, but mostly just right after infusion. Today, I took a Gas-X before she started the push, and it worked great!! I'm not on Herceptin, but I do take Xgeva once a month. You talk about southern cooking - where are you? I'm in Georgia. It's great that you have so few SE's!!
Aurwhe: Wow! 2.5 years!! That is what I want to hear!! So you're saying your hair fell out and then came back in all while on Navelbine? I have started noticing some slight thinning - even DH can't tell, but I'm wondering how bad it will get. Hair is important to me, I won't even try to hide it.
Kita: Good luck on your 1st treatment. Let us know how it goes!! Thinking of you!
Well, after having Navelbine held for 2 weeks due to low counts (white cells and then platelets), I was able to get treatment today. They reduced the dose by 25%. So I went from 52mg to 39mg. I really hope this will help with the counts and I won't feel so bad this time. It has been 3 weeks since my last treatment and I *just* started feeling better yesterday. So I got one good day out of an entire month. Ugh! I am really hoping the dose reduction will allow me to have it more consistently so it can work better and lessen the SEs. Getting two and missing two is not good. I asked about my TM's and they are still climbing so not sure what to make of that...very small increase, but still - going in the WRONG direction. I am happy to hear these stories of success though and hope that it works!!!!
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I forgot to say one thing about Navelbine. I got Decadron as a premed for Navelbine for about 1 1/2 years. I developed cataracts from the decadron and had them removed in February and March of this year. I am not sure how common of a side effect that is. I am doing fine on the Navelbine without the Decadron premed. They give me Aloxi premed for nausea. I hope that I haven't scared anyone talking about cataracts. During the 10 plus years that I have been dealing with breast cancer I have tended to get the unusual side effects. Hopefully none of the rest of you will get cataracts. If you would happen to the surgery for it was very easy.
Kita-I hope that your first dose of Navelbine goes very well today. Good luck.
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I also got cataracts, mine will be removed in a couple weeks.
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Cromercrab, I just got home from the hospital today. Except for the hip replacement I haven't been in the hospital for cancer. On Wed as soon as I got home from Navelbine and zometa which is over an hour away I got very sick with 103.8 fever. I had low red blood 7.6 and low white,2. Also I got results of ct that day and said lungs looked full of something that looked like groundglass. (you'd think they could come up with a better word). I was pretty scared about the whole thing, could hardly think. I got bag after bag of IV antibiotics, saline and a blood transfusion. Drs couldn't say enough how dangerous a fever is bec of infection. They said I have pneumonia. No cultures grew and they said the fever it was probably Tumor Fever from the liver. I'm pretty clueless again. Never heard of tumor fever. The navelbine seems to be working, from 876liver enzymes to 185 on kita: Wed. I've been on it since June on one schedule or another. Now she's changing it to everyother week on. She said they won't make it higher if it failed, just move on to something else. She told me about someone of hers who gets it once a month now and is still doing fine.
Sissyvovvon when I was in the hosp the dr suggested I might be swallowing wrong causing food to aspirated in the lungs. It doesn't seem like that is what am doing but he sent in a swallowing person to check me out and she did t think so either.
Thank you for this thread. To me it is so very helpful. Praying this works for all of us for a long long time.0 -
Cromercrab60, I just got home from the hospital today. Except for the hip replacement I haven't been in the hospital for cancer. On Wed as soon as I got home from Navelbine and zometa which is over an hour away I got very sick with 103.8 fever. I had low red blood 7.6 and low white,2. Also I got results of ct that day and said lungs looked full of something that looked like groundglass. (you'd think they could come up with a better word). I was pretty scared about the whole thing, could hardly think. I got bag after bag of IV antibiotics, saline and a blood transfusion. Drs couldn't say enough how dangerous a fever is bec of infection. They said I have pneumonia. No cultures grew and they said the fever it was probably Tumor Fever from the liver. I'm pretty clueless again. Never heard of tumor fever. The navelbine seems to be working, from 876liver enzymes to 185 on kita: Wed. I've been on it since June on one schedule or another. Now she's changing it to everyother week on. She said they won't make it higher if it failed, just move on to something else. She told me about someone of hers who gets it once a month now and is still doing fine.
Sissyvovvon when I was in the hosp the dr suggested I might be swallowing wrong causing food to aspirated in the lungs. It doesn't seem like that is what am doing but he sent in a swallowing person to check me out and she did t think so either.
Thank you for this thread. To me it is so very helpful. Praying this works for all of us for a long long time.
Marsha
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Thanks ladies: Hope all are doing well today. Lyn1, I am in East Texas near Texarkana. I love fried okra, tomatoes, squash, barbeque and fried potatoes. Mexican food is a staple here. We like apple pie, cherry pie and chocolate cake. I drink lots of milk (make sure it's hormone free) and onions and peppers are a must. I am hungry all the time. The only thing I am getting with the Navelbine is the anti-nausea med, and I can't tell I take that. I believe my only SE is the gas issue which I intend to deal with by taking the Maalox or Gas-X. There is a mineral that is vital as an immune builder and that is Selenium. We don't get enough minerals in our diets. I plan on getting an extra mineral supplement along with my vitamins. Guess I will ask the DR. about it first. He told me to take B6 too. I don't drink colas unless I need one, lemon juice is a good cleanser for the liver etc. Takes me a while to drink that one...I hope all you ladies do well...
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sissyvonvon: You're making me hungry! Yum!! I grew up here in Georgia so love all that good southern food too!
That's all I get too is anti-nausea (Zofran). I also take B6, but can't really say how much it helps. Guess it doesn't hurt - and I do think it helps a small amount with my energy levels so I keep taking them.
Do you drink just lemon juice? How much? I bet that IS hard to get down. I'd be permanently puckered! LOL!
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Yes, just lemon juice and water to dilute it. I read where lemons are a cancer fighter.
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Doing ok after my first dose. I was just tired as usual and had a sore jaw yesterday and today. Feels better today.
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