Navelbine-Please Respond

Just got back from oncologist office. They have now switched me from weekly Taxol/Herceptin to Navelbine. Two weeks on, one week off. Would you please let me know what side effects to expect from this drug? The only thing they said was that it does mess up the blood counts.
My PET scan wasn't too good. Everything is growing. Especially retorcrural , para-aortic and intra-aortocaval lymph nodes. Also appears to be in left chest wall, among other masses. I can't believe Navelbine will take care of masses, does anyone out there know?
The only good news is it isn't in my liver or lungs yet.
Am more than a little depressed.

Annemarie,
You have reasons to be down. But I'll bet Navelbine will turn things around. I have liver and bone mets and have been on weekly Navelbine/Herceptin since September. My most recent CT scan showed a 50% REDUCTIION in the liver mets (there were many). Most people tend to tolerate Navelbine well. It was tougher on me at first. Most don't lose their hair, but mine thinned badly, so I shaved my head. Yes, it does decrease your white counts. But I have a Neulasta shot every few weeks which takes care of that. It also can cause stomach upset (not nausea) and constipation. Stay on top of the constipation. After trying many things, I've found that Traditional Medicine's "Smooth Move" tea does the trick. Also, some Navelbine patients do better by getting off gluten for a while. I love breads, but I switched to almond crackers and quinoa/rice pastas, etc. It helped my tummy issues. For the first few weeks, I felt like I'd been hit by a Mack truck, sort of flu like. I don't know whether this was the Herceptin or the Navelbine, but it eventually passed.

Best wished on your new treatment, and keep us posted.

Love and light,

Lisa

My mom takes navelbine/gemzar. has mets to liver and brain and ? has a minor headache from time to time, has upset stomach and bloating. has pains in ribs and back.not much sure how much is due to navlebine/gemzar and how much just to the mets. will pray that it works for you!

I have been on weekly Navelbine/Herceptin for almost a year. Liver, lungs and bones are now clear! I give myself two shots each week of Neupogen to restore my white blood count and twice in the last six months I have needed Procrit for the red. My hair is thinner than I'd like but still okay. I don't have other side effects.

Good luck.
Jane

My wife had 6 months of Taxotere/Navibene. Lowered her blood counts which were countered with Neulasta. She suffered a chemical burn on her arm at the injection site which cause a very painful phlbytis. Seems to have been easy to tollerate early on, but had a cumulative effect. At end of six months she was very tired and worn out. Good news was that drug combo worked very well reducing 7cm tumor in her lung to 2cm and resolving completely 2 1cm tumors in her liver.

Thank you so much for your post. I really need to hear something, anything positive. It has been a very stressful two weeks first with the brain met and now to find out cancer is growing leaps and bounds. Did you get it two weeks on and one week off also?

Lisa, thanks for your response. Guess I am just beside myself. They did order me an antidepressant today so maybe it will help get me through this. Perhaps I should take an antiacid daily just to be on the safe side. I already have problems with constipation so will try and keep it under control. I take 4 colase and a senacot s every day. Problem is, I don't think I drink enough liquids so am going to have to start forcing myself to drink more. Again, thanks for responding.

Sure hope it works on these lymph nodes and masses that are cropping up. And, thanks for your reply.

I, like you was switched from Taxol/Herceptin to Navelbine/Herceptin in November because my lung mets tumor was growing aggressively. I am getting weekly treatments 3 times a month and 1week off. My white and red blood counts have been o.k. but today, I was told my red blood counts are starting to drop but not on Procrit yet. The biggest side effect I have is some bone pain and fatigue. However, my scans in January didn't show any shrinkage but it stopped the growth, so that was encouraging to me. I hope next time, it shows shrinkage. I hope this helps, I;ve been in your shoes and think I know how you feel. I'll pray for you.

Ann,
I had mets to aortic window node, biopsy could not remove it all. Spot on lung, spot on pelvis. My tumor marker had risen to 220.

I had Navelbine/Herceptin for two months, three wks on, then just Herceptin the fourth week. That is all it took to put me NED. My tumor marker dropped to normal and all scans were clear.

I have read of others getting your proposed dosing schedule since then, however.

My side effects were: lots of short jabbing pains throughout my torso area. We here, have called them 'ping pong pains' as they seem to bounce around. This lasted for the first day or two for the first three? weeks. There was also a severe jaw pain/cramp that lasted about 20 mins once, and about 10 mins once.

My hair thinned, but not so anyone else noticed.

My counts got low. I never had any shots tho'. I did however, get a UTI that the first round of anti-biotics did not touch, so that it went to my kidney and sent me to emergency.

The Herceptin is a piece of cake. It is the Navelbine that can cause you some trouble. I can't remember, but really hope you have a port for your infusions.

The Decadron gave me more trouble than it was worth and I asked for it to be discontinued. No promblems.

I became more and more tired, cumulative. Took me about 6 mos to come back after I stopped. I The Decadron gave me more trouble than it was worth and I asked for it to be discontinued. No promblems.was 53 at the time. That was 14 mos ago that I finished and am still NED in body.

You can do this. They even reduced my dosage once, the last time, and that can be done for you, too.

smith had Navelbine, similar side effects and she got her dose reduced as well... I'm sure she will post to you...

loveyou, bighugs,
pattyz

I will offer an option should you need a boost to your red blood cells....aranesp can be administered thru your port every other week, compared to wkly injection of Procrit. They work the same. I get 300mg which did the trick.
Best wishes to you!

I never heard of that, is it something new?

Isn't it ironic that we both have problems with the para aortic lymph nodes and we both ended up with brain tumors.

I was on this combo for a short time because it didn't work for me. Mine was lymph and skin mets. I craved sugar big time, was very tired and my sleep was all messed up. This combo didn't agree with me and was glad to get off it. However, it works wonderful for some people as you can tell. We are all different so must keep the doctors on their toes to figure us all out. Best of luck to you. Blessings and hugs, Sandy

Annamarie,
When I had my recurrence, which was confirmed by biopsy to lymph and skin, I had a mass developing in my remaining breast which became as big as my hand, in addition to the axilla on that side becomming very enlarged and hard. Didn't want to waste any more time so went on to treatment, Navelbine/Herceptin. Within 3 months everything was normal, and after 6 months NED. I think I had a very dramatic response, but I know others have had equally positive results in short order, so don't despair! This is a great combo. I took it weekly, and had very acid stomach so took Pepcid AC, but am now on a prescription acid blocker as GERD seems to be the long term side effect for me. Had low blood counts, and twice got only a half dose of Navelbine which did the trick for getting my counts up for the next treatment. Was of course tired from the low counts, but managed. My hair thinned a little, eyebrows and lashes included, but no one really noticed except my doc, who thought I looked great! I think you'll do fine on it, keep us posted.
Hugs,
Lolly