Navigating Navelbine
I am starting this thread for the discussion of all things Navelbine. It's for those currently on it, those who have been on it, or will start it soon. I hope it will be a source of information, a guide to help with side effects, and a place to rant, vent, cry, scream, or cheer!
I had my first treatment this morning. It went smoothly. My new port worked great, and I had a very dear friend along to keep me company and help with my nerves/fears. It took about 1.5 hours for the Zofran, saline, and Navelbine. Not too bad. I had no problems/reactions during the treatment.
Soooo....what can I expect now? The onc said any se's would probably appear soon after infusion so I'm expecting them to hit tomorrow I guess???
Please feel free to chime in with any tips, advice, etc.
Comments
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I've been on Navelbine since November. I have no side effects. When I first started I was given Dexamethazone - which I hate. It's not required, so I opted off of it. I hope you find it as easy as I have.
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Hi Chele!! The only pre-med I had was Zofran. He said I didn't have to have the steriods if I didn't want to and I didn't have lots of nausea to need it. He said this is not known for lots of nausea so he let me try the first one without it. So far, so good, but it's only been a few hours so time will tell I guess.
Thanks for jumping in! Hope more join us!! And, yes, I hope I do as well as you have!!!
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Been on navelbine 10 weeks. Two weeks on one off. SEs fever all the the from 99 to 101.8.fatigue and Gen feeling of unwellness which could be the fever. Really pretty easy compared others I think. Hope it works for you for a long long time.god bless you. Marsha
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I have been on since February. At first it was every 3 weeks with 1 week off. Then it kicked my butt. The nauseau is what got me. I lost a lot of weight and could not eat anything. We got the stomach meds working with a little pot smoking here and there which is GREAT for nauseau. I told my doc and he laughed and said whatever it takes to make you can weight, if it is the munches so be it! My counts tanked so we know do every other week. That has worked so much better for me. Sometimes I have to get the neupugen shot, like this week. Supposed to have it Friday bit WBC was critically low. So just got my Herceptin and Zometa and a shot. I hope to stay on navelbine for awhile.
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I have been on it since last August. At first I was quite tired, but I attribute that to still having Taxol in my system. Since I am very allergic, I have to have lots of Dex and Benadryl. So really, the only side effects I have are from them (the Dex has made me quite bloated...)
The good news is that the Navelbine is working! The nurses tell me that those who get a response with Navelbine usually stay on it for a long time. I met one woman who has been stable with it for 5 years!!
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Thank you all for replying!
Marsha: I had not thought to check for fever. Thanks for the reminder. Glad to hear you find it easy!
TigerBlood: I hope you can stay on it a long time too! I'm curious how my counts will be on this one. I'm not used to worrying over counts since mine were always good on Xeloda.
Lotusblossom: That is great news!! I hope the nurses are right about it working for a long time.
Well it's only been 2 days, but so far I don't feel too bad. I have had some fatigue and some achyness, but only minor. This weekend I did give into it usually and just rested/slept, but if I had something I wanted to do, I'm sure I could have made it. That has given me some hope that it will be manageable.
I have been having some stomach pain though. I call it cramping, but it's really odd. Maybe it's constipation but I had that with Xeloda and this feels different. It's almost like my stomach just hurts, but not because I need to go to the bathroom. Has anyone else had this?
Did anyone lose their hair on this? I hear you can, but many do not. I hope I'm one that does not!! *fingers crossed*
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I am not on navelbine but just want to congratulate Lynn for starting the thread and wish all of you a long ride with minimal side effects
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Thanks for your support, Barb! I really appreciate that!
I had hoped this might be similar to my All about Xeloda thread, but I guess there just aren't many on Navelbine.....??
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I have been on Navelbine since February and have tolerated it pretty well. My most recent scan showed regression:). They were in May.
My biggest complaint is neuropathy but I have been on so many chemos who knows. I also sometimes break out in a horrible sweat like a hot flash but I am almost a very
young (ha ha) sixty. This only lasts a day or two.
I hope we all have a long run on whatever treatment we are on.
Nancy0 -
I did Navelbine for a while too. It's what I was given when liver mets were found, and was what I was supposed to try to shrink the mets pre-resection surgery. It worked.
After my surgery, about a month later, I went back on. Unfortunately, I got c-diff (unrelated except for my low white counts helping it along) and had to stop.
When I restarted chemo, it was Abraxane, easier on the GI tract.
I didn't have many side effects from Navelbine. I did have heartburn, and my muscles jerked a bit and I got cramps. My white count dropped dramatically and my reds too - had to have a transfusion. No hair loss, no other side effects like taste changes, etc.
Abraxane has been much the same, except I don't get cramps or heartburn but I do get the jerks and I have a loss of appetite.
Navelbine is known for its constipating effects but that wasn't as issue for me either.
Good luck on it!
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Nancy: Love to hear that word - regression!! Awesome!
Ann: I'm curious what my counts will be on Friday when I go for my next treatment. I never had any issues on Xeloda so this count-watching thing is something new to get used to again. I was on Abraxane in 2010. I had it with Avastin (evil, evil drug in my opinion), but it worked really well. Doc said we could use that one again, and I hope if we do it's not as bad by itself.
I had bad consitpation on X, so I'm sorta used to dealing with that, but I have had to double my stool softeners to get, um, results, so this stuff is quite binding. I now understand it's nickname...navelbind. :-\
My issue lately is jaw pain. I've googled it and see that it is a "less common" side effect (of course I get all the "unique" se's). Not sure what to do about it. I tried Advil yesterday, but that didn't help, so I'm going to try Aleve today. I also left a message this morning on the nurse line to see if they had any tips or suggestions.
Oddly, to me anyway, yesterday seemed to be my worst day. Had tx on Friday, and Monday was my "bad day". I came to work yesterday, but man was I tried and achy and grumpy! Poor coworkers. But I have cleared it with HR now that I can telecommute on Fridays and Mondays now and so hopefully that will help. I feel so much better today - almost normal. Yay!
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I am getting my navelbine now. I had to get a shot Friday cause my WBC was shot. I also get the jaw pain. Advil never touched it so we did pain meds and napraxene for inflammation. I had regression with my first scan. I have another scan Thursday and I am hoping for stable.
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Tiger Blood: Best of luck to you on your scan! Hope you are still with Reggie or Stable Boy!!!!
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Treatment #2 is in the books! This time it seemed to go faster, not sure why, but we got out of there almost 30 minutes faster than last time. Definitely not complaining about that!
I did not have anywhere near the jaw pain as last time, which was a relief. I read online where if you placed the tip of your tongue between your front teeth that this made you relax your jaw muscles - it seemed to work!! You really can't clench with your tongue there and if you still do you press on your tongue, which makes you stop fast!
Still have some consitptation, but working on managing that. No other se's so far except fatigue. It's weird fatigue to me too -- it's like if I had my choice, I'd rather lay down and rest most of the time, BUT if I have something I need/want to do, I can get through it ok. So this weekend was some of each.....do stuff, rest, do stuff, rest. Hopefully as my body adjusts to this it will level out even more. I'm ready for "new normal" to arrive and make itself at home.
I really need to try to exercise again. I haven't since port surgery and I do think it would help with my energy levels. Just wish it were not so HOT here so I could walk outside.
My hair is still hanging in there ok. Just seems more "flat" than usual, but I'm not shedding all over -- no hairs on the pillow, shower, brush, etc. I'm going to get my hair cut really short this week and hope that will help too. It's already short, but I'm going to take it down to a pixie cut so it is towel-dry and go. The less you mess with it, the better.
Sooo...there's my update for this week. Would love to chat with others who are on this same chemo!
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Just found out I will be joining the party. Vinorelbine iv 3 wk on, one week off, in combination with oral cyclophosphamide daily. Anyone else doing that combo?
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Hi Learnin! I'm only on the Navelbine by itself....once a week, every week, no breaks.
When do you start?
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I get a PICC line July 30. Start Navelbine July 31. Meanwhile, starting the referral process for a port.
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I go tomorrow to get a CBC to see if I need the neupogen shot before chemo this Friday. My WBC is whack! I was critical low last week and we had to withhold for 4 days. They gave me the shot so they were stable in a couple of days.
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Learnin: So you're getting a PICC line until you can get the port? That's too bad that you have to do both!
Tiger: Sorry your WBC's are so low! I hope the shot helped and you get the chemo this Friday!
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Lynn - yup, I get to have both. Sounds like it may take a while to get the port organized. But at least I get one eventually.
I had a PICC line for 6 months in 2006. Inconvenient. Had to wrap it in Saran wrap when bathing to keep it dry etc.
What do they advise now about showers/baths and PICC lines? Once the port is in, can it be used immediately? I see there is a thread just on ports - will check that out too.0 -
If I'm not being too nosy, why is it taking so long to get the port? My mom had a PICC line once - she also said it was a bit of a pain.
I think that may be my thread you are referring to on ports. Everyone was so helpful with all my many questions. Yes, you can use the port immediately. Some have the surgery in the morning and 1st chemo in the afternoon.
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Hey Navy Bean gals,
I've been on Navelbine for a whopping 6 weeks now (so can't speak with much authority) and it is going great, though I do have some neuropathy in my feet and hands. It is more than I remember having on Taxol or Abraxane, so I'm wondering if others have this problem. Of course, I don't want to complain for a minute since a little neuropathy is not a big deal and I'm certainly hoping Navelbine kicks some cancer bootie. Still...wondering if anyone else has this and whether, perhaps, dosage changes might help?
The other SE I have is heartburn/reflux, but is okay with twice daily prilosec.
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Hi Nancy! I've only had 2 treatments so just a bit behind you. It's still early so I haven't had any neuropathy yet. Did that just start (at #6)? My onc did warn of that se. I hope mine does not get worse than when I was on Abraxane - I hated that. I can tolerate a little of it ok, but clumsy hands are no fun when you type most of the day at work.
I'm taking Prilosec also. I was already on it from the Xeloda so just continued taking it since I had read some have the heartburn on this. So far so good with just one a day.
Does anyone get gas during infusion? Last time my stomach started rumbling and feeling not so good. I went to the restroom right after they were done and fortunately it was just gas. (Sorry if this is TMI) I was wondering if I took some Gas-X beforehand if that would help?
Have you noticed any hair loss yet at 6 weeks?
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I haven't started yet - but was anyone advised that any vitamins will help prevent neuropathy? Wondering about B vitamins.
Lynn - I think my port delay is because it may take a while to see a surgeon, and then it may take a while to get the OR booked. I live in a rural area, and the cancer center is in a small city a couple hours away. In any case, if a PICC gets me started on treatment faster, I am OK with that.0 -
Learnin: I am still taking the B6 vitamins they recommended for Xeloda. That was for the HFS though, but I find they give me some energy so I continue taking them. If I remember correctly, L Glutamine powder is recommended for neuropathy. Has anyone seen any success with it?
Oh, ok. I see. Yes, good they can get the PICC quickly and then do the port when they can. You definitely don't want Navelbine without one of them!
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At some point a pharmacist from the cancer clinic is going to give me a call. Will add glutamine to my list of questions for him/her. Any other questions anyone is curious about that I could ask the pharmacist for all our benefit?
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Well, no chemo for me today - my ANC is too low. Dang it! And just barely too.....I can get it if it's 1.0 or higher. Today it was 0.9. So close and yet so far I guess.
Part of me is bummed....I know he said this was for 12 weeks regardless of how many treatments I was able to take, and of course we all know it's best to get them all in. But the other part of me is glad I get a little break - been so tired this week and all. I'm hoping this week off will get my counts back up, get my energy back up, and get me back to fighting hard again next Friday!
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Lynn- I have to get the neupugen shot the Tuesday before treatment. I hope your counts return soon. I am getting my Vitamin H and Navelbine right now. Do you do any premeds before? I do 2 Tylenol, anti nausea, zantac, and one Benadryl. What about you guys?
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Vitamin H?
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Sorry to bail out from this topic! I went on a much needed vacation and then cut back on my computer time.
I do have side effects from chemo, but they all started before Navelbine.
Constipation. I've had that with all my chemos. I have been taking my morning and bedtime meds with Prune Juice. It's really not that bad. It keeps everything working, and it's not a drug.
Vitamins. I've been taking Noni to help my immune system/WBC count, I take it two or three times a day. I take calcium/magnesium/zinc, 5000iu vit D3, Centrum Silver, and Fish Oil in the am, along with my Prilosec for acid reflux. After lunch I take B50 - it is a high potency B vitamin complex; it seems to really help me get through the afternoon. At bedtime I take my Rantidine for acid reflux.
Hair loss. None. In fact, my previous chemo had thinned my hair, but it came back in during Navelbine.
Blood counts. Have tanked on every chemo I've ever had. I get the Neulasta shot the day after treatment, which makes for a lot of driving. Because of my counts I get treatment only once every three weeks.
Fatigue. Always. From the onset to now, it never waivers. I can't blame it on Navelbine, but I can say Navelbine has not made it any better.
I've been on it since November. I had xrays this week and I have progression. My last CA27.29 was good, so I'm wondering what next weeks test will show. My long term love affair with the CA27.29 may be over.
I'll see my oncologist August 14th. Not sure if we'll try to increase my treatments or try another chemo.
I think I've covered it all - my Navelbine journey - I've got mixed emotions about maybe having to leave it *sigh* on to the great unknown.
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