anyone had Navelbine, what side effects??

[Nancy Love]

Hello all, I am new to this forum, I am going thru
breast cancer recurrance after mascectomy, chemo
...last time had AC/Taxotere (couldnt take due to very bad
side effects) and Taxol. Am HER2+++hormone neg, age 46.
This time am on Herceptin weekly and just finished radiation,
and just started chemo with Navelbine. I was told and read it
is tolerated quite well...I am sensitive to meds and here is
what is going on with me...
Right away had mild aches and fatigue which worsened day 2.
Now at day 3 and 4 have severe jaw pain...it feels like someone tried to pull my tongue out, and then punched me in the jaw. Some joint pain continues. This really boggles my mind why my jaw hurts so, i have never had this before and I know it is from the chemo. I read it IS a rare side effect. Figures I would get it. I have no nausea.
Have some constipation. Am drinking alot of water and walking to help. ANyone else experienced this???
HELP! thanks, Nancy Love

[Lolly]

Hi Nancy; I've had Navelbine/Herceptin twice and yes, constipation is a regular companion...Eat LOTS of fiber, that's the best way to stay regular. I even took a psyllium powder while on Navelbine. Some psyllium products, like Metamucil, are flavored. Aches and pains, especially joint pain, also. I never had the jaw pain you describe, that doesn't sound like much fun. Hopefully it will recede as you go along. I DID have severe pain in my shoulder and arm with my first infusion; it lasted about 10-15 minutes and just took my breath away. With the second infusion the following week, I had some pain but not as bad, and by the third week none at all. It never recurred. Hope your jaw pain does the same, and best wishes for you as you go through the ups and downs of adjusting to our "new normal" life You will find lots of friends here.

<3,
Lolly

[mamacze]

Hi Nancy,
Oh, I am so sorry you are experiencing such pain and ugh, that constipation. I imagine we'd have to deal with that even without the chemo, but the navelbiene seems to make it worse. Lolly is right, fiber, fiber, fiber and loads of water.
The infusion also gave me terrible burns in my arm; I ended up with a port which truly was a blessing.
But oh, the joint pain...I went off my navelbine after 9 months and just stayed on Herceptin...but my joint pain has stayed with me; I don't know if you ever get used to that. But take heart; the side effects you experience now are probably the worst it will be while you are on these drugs.
Welcome, Nancy to this forum. We have some incredibly smart and helpful friends and we are always so happy to welcome new members.
Love Kim from CT

Nancy...... Yes! to the jaw pain question. I had it as you describe, but (this is the good news) only after the first two infusions. The second infusion jaw pain was also of shorter duration than the first: from about? 1/2 hr/hr down to 20 mins.

I also had what we've referred to as 'ping-pong' pains. If you have them you know how well the term fits. Short-lived sharp pains that jump all over your body. This also decreases each infusion (in my experience anyway).

Constipation: yes.

Also, a UTI did not respond to first scrip of anti-biotic and went to my kidney sending me screaming to ER from the pain...

Had severe arm pain which remained undiagnosed, but was at first thought to be blood clot. That lasted two? weeks.

Fatigue was cumulative.

This was nearly three yrs ago and my body remains NED. I stopped treatment after scans and bloodwork came back clear and normal. Took just a few months. Good stuff for me this Navelbine/Herceptin combo....

hoping for good results for you, too.
pattyz