Navelbine hurts

[Nancy Love]

Hello again dear freinds,
I am just getting ready for Navelbine #2 and I havent
recovered from Navelbine #1..severe jaw pain, its awful.
It wont let up. Im on Darvocet now and Im not one to take
pain meds. If the pain goes down a bit while Im taking the
med, it returns in 4 hours just as bad. My onc says 2% of
people on Navelbine get this rare side effect. I also have
other joint pain that "ping pongs " around, tonite in my
sternum, so bad it made me think my herceptin was
affecting my heart. I had an EKG and it was normal.
Thank you for listening to me whine again, i just dont know
what to do, it is unrelenting. I cant imagine 6 months of
this...im due for weekly Navelbine and Herceptin. I do
tolerate the Herceptin.
nancy Love

[al from Canada]

Hi Nancy,

My heart really goes out to you as my wife Linda also had major pain although it wasn't something we couldn't control with narcotics. My suggestion would be is get the doctor to take a good look at your blood work, it may offer some clues. Otherwise, I woulds ask him for a different dosing schedule, a dosage reduction........ You may want to go off of it completely as I have always maintained that pain is symtomatic of something bigger. Have you tried Xeloda? It works in a different way than the navelbine but is a comperable drug in terms of effectiveness. Another is one of the platinum drugs.

Good Luck,
Al.

[pattyz]

Nancy,
I'm sorry you are experiencing continuous jaw pain... as I said below to your other posting mine was short lived, though severe.

May I suggest that you take your pain med (whatever works) on a regular schedule... atleast for a while. At some point you can try skipping it to see if they jaw pain is gone.

I also had my dosage of Navelbine reduced, without losing effectiveness. Maybe that is a possibility for you, as well?

good wishes to you,
pattyz

[Unregistered]

Have you tried Oxycodone as a pain reliever? I have used it successfully as Darvoset didn't work.

When I was on Navelbine/Herceptin I had severe nerve pain in my lower back. It had to be relieved with a dose of Morphine. It would always come on just before I was done. The Morphine would relieve the pain and then I could go home pain free. I had never had this pain or problems with my back before.

I hope and pray that you and your medical team can work to alleviate your pain. Pain just wears you down.

God's healing to you.

[Unregistered]

Hi,
I am sorry you are having so much jaw pain. I am a dentist and I always suggest to my patients warm moist compresses, massage, you can try a new pain reliever called Combunox. Try to relax and maybe even a bite guard may help. My mom had terrible leg cramps with Taxol but felt better when she took Tylenol with Codeine before her infusion.

Take care
Anne

[Esther]

When I was on Navelbine, in the first infusions I experienced tremendous bone pain. I was already having severe liver pains because my liver was so diseased at the time of my diagnosis.

I used ALL I could get from my onc. I had Morphine, and Oxy-codone (spelling?) Don't be afraid to ask for stronger pain medication if you need it.

My Navelbine schedule was changed, I went to an every other week schedule, and over time the bone pains decreased, until I no longer needed strong pain meds, and could just use Ibuprofen as needed. Once I reached this point, Navelbine was very tolerable for me. I continued on it for 14 months, until reaching NED in both bone and liver mets.

Talk to your onc, make him aware of the pain you are in. Together you can find a solution that will work for you.