Navelbin--hope I spelled it right.

D.W. · 09-27-2008, 06:53 AM

Just wondering what results people have gotten on this drug. I'm starting it on Thursday. My onc. took me off of Tykerb and Xeloda--too many nasty side effects.

Pam P · 09-27-2008, 08:16 AM

I was on Navelbine & herceptin for 12 months. I had good results with it. Side effects were slight nausea for a couple days after treatment & low white blood counts so I had to give myself neuposen shots for 3 days after each treatment - that wasn't too bad. Otherwise I felt pretty good on it. Good luck with it.

ElaineM · 09-27-2008, 04:44 PM

I took Navelbine with Herceptin successfully. No hair loss, only slight hair thinning. No nausea. I took special supplements for my white and red blood counts instead of shots. The I. V. infusion is supposed to be in 10 minutes or less,which means you might be in the chemo room for a shorter period of time, depending on what else you are going to get with it. I did experience fatique, but my naturopath told me the original source of Navelbine was the periwinkle plant and the American Indians used that plant as a sedative, so I needed to get some extra rest afterwards.
I think you will like it compared to other medicines with more side effects. The main thing is that it will work and you will have less cancer someday. Good luck with it.

pattyz · 09-30-2008, 09:15 AM

D.W.

I was hoping you'd get more input on this...

I had complete success with Navelbine/ Herceptin for mediastinal nodal mets/spot on pelvis and lung. That was late in 2002. I only did four rounds to reach NED in body.

Since you've also had brain mets: with your Xeloda/Tykerb, did you try reductions in dosage?? Many others have found that by reducing dose totally eliminates or very much lessens the side effects. Since both of these drugs cross the bbb, seems it would be more of a 'targeted' therapy for you.

Some have also reported a 'boost' to reactivating Herceptin when it has stopped working, by adding Tykerb to the mix.

Since this is not a mets only site, I am offering you and invitation to bcmets.org. "We" also have a sister site: brainmetsbc.org devoted exclusively to those with breast ca brain mets.

Best wishes in whatever tx's are ahead for you,
pattyz

Stephanie B. · 09-30-2008, 09:22 AM

I just finished my 2nd round on Nevalbine yesterday. Maybe we can compare notes. After my first round I was a little nauseated, but I took the meds and was fine. This morning i went ahead and took the nausea meds with my other meds to stay ahead of the nausea. The main thing I have noticed is some neuropathy in my fingers which my onc nurse said is normal.

Good luck
Stephanie B.

laurie2007 · 09-30-2008, 09:36 AM

I have been on Navelbine and Herceptin weekly since January 2008. Other that low white blood cells counts that resulted in them skipping a week here and there, I only had one signficant side effect. I had severe muscle pain in my quads, hamstrings, calves, and feet - cramping. It was debilitating and it took nearly six weeks after Navelbine was stopped for the pain to get to about 10% of what is was. Strange side effect - doc (Dana Farber trained) was stumped but we're all differently. Minor side effects were some slight fatigue, and one incident of thrush that went away within a week with treatment. Best of luck with your treatment!

D.W. · 10-02-2008, 08:53 AM

Pattyz,

Yes, the onc. did reduce the dose of Xeloda, but sadly my hand/foot syndrome just continued to be yucko. Thanks for the web info!!!

D.W.

Stephanie B,

Yes, we should compare notes on the medication. Great idea. I start this afternoon with my first dose of Navelbine and herceptin. Yippy. I used herceptin for a long time before and tolerated that with no side effects.

D.W.

08-11-2010, 02:25 PM

I just had my first session with Herceptin and Navelbine today. I have had Herceptin for one year in 08/09. Then again this year starting 6 months ago together with Xyloda whic I tolerated badly and had to go from 4150 mg per day to 2150 mg per day. Sadly the mets had grown as of my last scan last week so hence the change. I get this treatment every 3 weeks and I wonder why some of you get it every week and what the dose is then. I would also like to find out why and when Tyverb is added to the "coctail" - ready to take anything now.... mets in both lungs, can't remember the sizes but scary all the same...
Wishing you all the very best!
Lena in Sweden

08-22-2011, 10:37 PM

Hi Iwant to know that till now the mets hava disappeared and how is the condition health wise as for my wife we will be starting navelbine and avasthin on sunday..reply to khozemabad@yahoo.com

Dianedack · 08-24-2011, 02:19 AM

Yes I am on Navelbine and Herceptin/Zometa. I am not really enjoying this chemo treatment although currently it seems to work I have had two rounds of two weekly doses and then a two week break. I think I would prefer it three weekly which I will discuss with doctor. I dont generally do well with side effects of chemo treatments so maybe I am just unlucky. Anyway if it works that is good. Good luck with the treatment the side effects are managable.

Regards

Diane

08-28-2011, 12:55 PM

Hi
I have just had my second Navelbine @ 75% & 85% respectively. I was previously on Xeloda and Tykerb (at great expense) for two and a half months, which did not work and the mets progressed in my lungs. The year of Herceptin previously, evidently did not work. My Onc stated that if Herceptin did not work "it" usually will return in one year.
In asking the Onc why they didn't give a cat scan to those after the year of Herceptin, she she said they don't like to give too many cat scans. And yet I have had two cat scans in three months!!
Go figure. I think it would be good preventative.

Gail

D.W. · 08-29-2011, 04:30 PM

Gail,

Thank you for responding to my message, Gail. My onc. schedules me for a CAT scan every six months. If the brain tumors are really tumors and not necrosis; my onc. will have to change up my meds. We won't know until the surgery. It will be Sept. 20th or 27th.

Take care,
D.W.

09-20-2011, 01:39 PM

Hi
Just finished my fourth scheduled treatment. (At 85%) so far I've had the tiredness for the four days after, my neurapathy has increased from my previous run with taxal three years ago (that's why my oncol hasn't increased the dosage to 100), and now I have the mouth sores.
What has anyone done to help them, I don't see my oncol for another week.

Gail

09-20-2011, 09:55 PM

Hi Gail . Thanks my wife went for 2nd cycle of navelbine only thing sha has acute back pain .. hope her mets are under control may be after 3 or 4 cycles they will again examine let us see and hope for the best.. thanks for yur update .. I will also keep update on this post..

Khozema

Jackie07 · 09-21-2011, 07:35 AM

Gail,

You should be able to call the oncology nurse to get a prescription called in to the pharmacy. There are different stuff you can use. When I had real bad mouth sores I was given the 'thrush' - a mix of Malox, Lidocaine, and Benedryl locally made by the hospital pharmacy.

The nurse might need to see you first. But either the oncology nurse or an oncologist on-call should see you immediately and give you the right advice.

http://her2support.org/vbulletin/sho...ht=mouth+sores