Nacelbine & Radiation Pain

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nectarinepony37
New Member


Date Joined Apr 2004
Total Posts : 6
   Posted 7/18/2005 11:51 PM (GMT -7)   
confused
I was changed to a chemo called Navelbine several weeks ago because my tumor markers were going up.  Has anyone else with IBC had experience with this chemo?  Also I am having increased abdominal pain. My surgeon opened me up and said it was inflammed scar tissue probably from rads I had last year.  Has anyone had any experience with this? 
 
Sorry I am so full of questions but I'm sure I can get the straight stuff from you guys.
 
Prayers,
Maggie

debbiR
Veteran Member


Date Joined Feb 2005
Total Posts : 730
   Posted 7/19/2005 5:36 AM (GMT -7)   

Hi Maggie! I have been on Navelbine and herceptin for almost 2 years. I have found that the navelbine is a fairly easy chemo. I take it weekly and only takes about 30 mins to administer. The only bad side effects are your hair will thin out (but you won't lose it all like w/ the other chemos) and muscle cramps (we call them "charlie horses" around here). Your onco can give you some meds that help with this. Also I have found that very hot baths w/ bath salts helped ease the spasams. You will also probably experience some neuropathy in your feet and hands. Be careful and watch this very closely. My onco will give me a break about every 4 months from the Navelbine because of this. Watch for signs of diabetes also. Not that this is a listed side effect from the Navelbine (or any other chemo for that fact) but I did develop it once I had to go back on the chemo. Not everyone does but something to watch for. The combination of the 2 chemos brought my cea counts down from 29 to 2.8 - 3.2 range. It does work. You might also talk w/ your onco about getting something to help strengthen your bones, if you aren't already. I get an IV med every 3 weeks.

As for the scar tissue. I have scar tissue from the rads in my chest wall area. I believe that is a pretty common side effect from rad. I go to a manipulative therapist and she is able to loosen up the scar tissue to where I can move w/out pain. I am sorry that you had to have surgery to discover this but it is good that there wasn't anything else in the area.

How long have you been off chemo? Has your onco ordered any tests to see if he/she can discover why your tag count has gone up?

Let me know if there are any other questions that I can help you with.

Gentle hugs...Deb



 

Post Edited (debbiR) : 7/19/2005 6:41:05 AM (GMT-6)


nectarinepony37
New Member


Date Joined Apr 2004
Total Posts : 6
   Posted 7/19/2005 10:07 AM (GMT -7)   
Deb,
Thanks for the help. For some reason I can read all about this stuff and hear it from the docs but I always feel more informed when I hear about them from someone who has been through it.

Hugs & Payers,
Maggie

gma
Veteran Member


Date Joined Jul 2003
Total Posts : 2921
   Posted 7/19/2005 10:35 AM (GMT -7)   
Maggie, I am sorry to hear your numbers went up. There are more who have taken Navelbine but not for IBC necessarily. I hope it does the best job possible getting those numbers back down. You are in my prayers. Hugs MK


MNlady13
Veteran Member


Date Joined Jul 2003
Total Posts : 2044
   Posted 7/19/2005 11:18 AM (GMT -7)   
Hi Maggie, I remember you posting at iVillage.  Glad to hear from you again. Can't help with your questions, however. But, I am sure others will. Best wishes and good luck. Hugs, Lauri

"Go confidently into the direction of your dreams. Live the life you always imagined" Thoreau
 
Life is not measured by the number of breaths we take, but by the moments that take our breath away.

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