Navelbine

[Carol]

I would like some feedback from people currently on Navelbine and Herceptin. I'll be starting Navelbine along with the Herceptin and Zometa that I'm currently on, on Friday. I have bone mets, but am now having more problems and will have a PET scan this week. Thanks for any help you can give me. P.S., I've been on Navelbine before and had trouble with blood counts, even with Procrit. thanks

[Lisa]

I've been on Navelbine/Herceptin/Zometa since September. I had several side effects with Navelbine, but the good results have been worth it. I'm curious why you ask, since you say you've been on it before. For me, tummy issues, fatigue, flu-like feelings, loss of appetite. The low white and red blood counts do come with the territory, but Procrit and Neulasta handle those. Oh, and I also lost my hair, although this is rare for Navelbine. My liver and bone mets have responded well so far. I hope to have another CT scan before too long. Let us know about your PET results!

Love and light,

Lisa

[Julie]

Hello...My name is Julie and I have been lurking here for a month or so.....

I have a question for you all...I am looking for others who have been on navel bine and whatever info you care to share.

I had my first navelbine today....was switched to this after 6 treatments of taxotere....

[Lisa]

Hi, Julie!

I've been on Navelbine and Herceptin since mid September for liver and bone mets. The Navelbine has been fairly harsh on me, although for many people, isn't easy. The first several weeks I had stomach issues and constipation, which you'll have to watch closely. Let us know your side effects (if any) and we can maybe help. A couple of things to consider immediately would be L-glutamine powder to help against neuropathy and Achidophilus to help prevent stomach issues.

Even with all the side effects, the Navelbine/Herceptin combo has worked great for me. Mets are reducing so far and tumor markers have steadily declined. I wish the same for you!

Love and healing light,

Lisa

[Pam]

Julie --
I was on taxotere for 6 months, had a 6 month break from chemo, and am now on navelbine. I've had navelbine weekly since early January. It's been easier on me than the taxotere. I haven't lost my hair (although it hadn't had much of a chance to grow since the last taxotere). I have fatigue, trouble with low blood counts, which are being helped by aranesp & neupogen. I also have stomach aches/constipation issues to deal with. Also, achiness/weakness, especially in my legs. I don't know yet how it's working for me, but I have a PET scan next week, so am hoping for good news. What are you experiencing with the navelbine? Pam

[Annamarie16]

I have just had my fifth treatment of navelbine. It is hard for me to figure out whether the side effects are from the navelbine or the MScontin that I take for pain. I do have some nausea and this week they had to give me Aranesp (I think that is what it was called) because my red blood was down. I also get extremely tired. Good luck with this treatment.

[rick]

My wife just finished her first cycle of Navelbine and it has really taken away her energy as well as alot of aches and pains. Also has excruciating pain when getting the IV.

This one was supposed to be easier than her previous regiments(CEF, Taxotere, Xeloda etc.)

The energy piece is really getting her down. Anyone else have this or have any ideas of things she can do. She is 34 yrs old, diagnosed 2 yrs ago, mets one yr ago to skin, sternum, mammary glands and maybe liver(not confirmed-suspicious 11mm spot, no change last 2 scans)

Thanks

[Lisa]

Rick, I've been on Navelbine since Sept., mostly weekly. It can be harsh, but it's been very effective for my liver and bone mets. The first couple of months I felt like a Mack truck hit me. I also had stomach upset/no appetite. I stopped eating gluten for the stomach and had some accupuncture which helped. But for the energy, that's tougher. Just make sure she does take it easy, but moves around some daily. Movement begats energy begats movement. One good multi-vitamin and protein powder in a daily shake would also be helpful. Her white and red blood counts will probably fall. I take Procrit shots every few weeks and Neulasta shots months from the doctor. They help. As for the IV, why has she not had a port "installed" in her chest or arm? I can't imagine getting chemo without it. You might ask.

Love and healing light,

Lisa

[Pam]

Rick - I've been on navelbine/herceptin weekly since January. My experience with it is lots of fatigue; it took my white & red blood counts way down. I get aranesp shots every 2 weeks for the red blood cells, and I give myself neupogen shots 3 days a week for the white counts. The shots have helped the counts & helped my energy too, I think. Although, I'm still fatigued. The nausea hasn't been bad with navelbine, but I do have a lot of body aches. I take either tylenol, ibuprofen, or darvocet sometimes for the achiness. I used to have a lot of stomach cramping in the beginning, but that has subsided (I didn't do anything differently, it just got better) & I think I'm tolerating the navelbine better in general now than I did in the 1st month or so. I have a port, so can't comment on the pain at the IV site. I agree with Lisa..... maybe consider getting a port, it's a real improvement, so much easier. I hope this info helps. Pam

[Linda in MI.]

Hi Rick,

B-complex helps a lot for decreased energy. Also, the protein drinks. I found an excellent one that even tastes good--you can order it on line-I like the chocolate. ALl you have to do is add water. It's 100% whey protein and it has 23 grams of protein in an 8 oz. glass. It's loaded with lots of important amino acids. It's excellent quality. The website is optimumnutrition.com

It also comes in vanilla flavor.

Hope this helps.

P.S. I try to drink 2 a day!!

Blessings and Hugs,

Linda in MI.

[Lolly]

Rick,
My first Navelbine/Herceptin infusion caused me quite a lot of pain in my chest and left shoulder blade and left arm( as far as scans and biopsy could tell I was only dealing with mets to lymph nodes and skin on left side). It subsided as the treatment continued, and the following week's infusion went much easier; by the third infusion I had a port and also no more pain. I don't think there's any way to get around the fatigue, it comes with the territory, she could see about shots to help the blood recover more quickly, but otherwise just get lots of rest and pace herself.
Best Wishes to you both,
Lolly

[Steph N]

Hi -
you ask about what kind of a job Navelbine did for any of us, so I assume that is your new treatment.
Well, it certainly DID the job on my tumors. I had this drug in conjunction with Taxol and Herceptin. A triple whammy to knock the socks off my liver mets. Many women have posted here with good results from Navelbine.
There have been the occasional complaints that it was not enough, but when you add even another chemo drug, as in my case, from the beginning you can get the results you want.
I had a complete response and have been NED for almost 2 years (soon I will be saying OVER two years!). I have never had skin mets, but my med onc said that these have never killed anyone even though not always pleasant or easy to treat.
All best wishes and blessings for a successful treatment.

[Sandy]

That is wonderful that skin mets never killed anyone! I have skin mets. Hugs, Sandy

[Lolly]

Susanne,
I had Navelbine/Herceptin for in 2001 for skin and lymph node mets, and was NED in 6 months. I have been on just Herceptin since then, just started Navelbine again due to second recurrence to lymphs but not the skin this time. If I don't respond as well as the first time, we'll drop Navelbine and move to another chemo with Herceptin, so yes, Herceptin can be combined with a new chemo, some are more synergistic than others.
Love, Lolly

[Lolly]

Ragini, I was started on Navelbine for the second time, this spring. My onc said if it's been over a year since having a chemo that occasionally they will try a repeat to see if there's a good response again, especially if it was tolerated the first time. This time I've had a harder time keeping my blood counts high enough and have had 1/2 doses several times because of low white counts and am on Arenesp for low red counts, which is helping. Otherwise the side effects have been much the same as the first time for me; upset stomach(I get Kytril before the Navelbine), thinning hair, tiredness. All in all, very doable as I'm having a good response again.
However, I was only on it for 6 months that first time, and you were on it for over a year?
When my onc suggested trying it again, it was with the understanding that it might not work again, so it was a bit risky, but since I didn't have mets to organs or bone we thought it was worth a try.
I hope you can rally and get your fighting spirit back, and hope you can find a combo that will work for you.
Love, Lolly

[Lolly]

Lyn, this is a link to a page from "docguide.com", you'll find links to various studies published about Navelbine...I searched on Google, what will pop up first is an advise that google couldn't find the link, but provides another one to try which WILL take you to the page...also did searches on Carboplatin and Taxol, follow the same procedure. I know it's alot of legwork for you, but I'm off to my Herceptin this morning so will help when I return this afternoon, in the meantime good luck!!!

Love, Lolly