HonCode

Go Back   HER2 Support Group Forums > Herceptin / Tykerb
Register Gallery FAQ Members List Calendar Today's Posts

Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb

Reply
 
Thread Tools Display Modes
Old 09-19-2010, 01:00 AM   #1
Chelee
Senior Member
 
Chelee's Avatar
 
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
Re: serious earaches---navelbine side effect??

Tricia,
When I recurred last December I was doing Herceptin/Navelbine I complained of terrible pain on both sides of my jaw...right in front of each ear lobe almost. It really hurt! I also told my onc I had what felt like the beginnings of a mild ear infection in both ears. Both of my inner ears were bothering me...not bad, but just enough to get my attention. The days I had the navelbine infusions I was also waking up around 4:00 AM in the morning and could hear my heart pounding in my ears...it was loud...woke me out of a dead sleep. That really concerned me. I informed my onc but she said she'd never heard of that before. She did start me on Neupogen to raise my WBC...but the jaw and inner ear pain was still there.

I can tell you as time went on the jaw pain improved. It was still there...but very mild...to almost not noticable at times. It's like my body adjusted to Navelbine? Which I was glad because it was much easier to tolerate then other chemo drugs. I know Herceptin/Navelbine is a good combo for lung mets and other recurrence...the two have a good synergy togther. But I can tell you I researched the jaw pain last Dec. I did see it "was" one of the side affects. And it did get better as time went on...hope some of this helps. You have a good medical team so they will figure this out for you.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.

Last edited by Chelee; 09-19-2010 at 01:01 AM.. Reason: Spelling...
Chelee is offline   Reply With Quote
Old 09-19-2010, 01:12 AM   #2
Chelee
Senior Member
 
Chelee's Avatar
 
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
Re: serious earaches---navelbine side effect??

Tricia,
I just found my old post about Navelbine causing jaw pain? When you read that thread you will see a couple other ladies had jaw pain too with Navelbine. Here's the link.

http://her2support.org/vbulletin/showthread.php?t=43161

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
Chelee is offline   Reply With Quote
Old 09-19-2010, 11:44 AM   #3
TriciaK
Senior Member
 
TriciaK's Avatar
 
Join Date: Sep 2005
Location: St. George, UT
Posts: 582
Re: serious earaches---navelbine side effect??

Chelee, thanks so much for your posts! It is so good to have someone else verify a particular problem so you know you aren't alone or crazy!! I hadn't mentioned the pounding-in-my-ears heart beat, but I definitely have that too. Since I have a weakened heart I just assumed it was part of the heart problem! Between the ringing in my ears, the terrible earache and the heartbeat pounding, I am not getting much sleep! Things are a little bit better on the benydrl but not much. I will make it through the day and get the blood tests tomorrow so we can go from there. Since the NP suggested a dropping WBC count may be the problem I am hoping they can counteract that so I can stay on the navelbine. I noticed that the link you sent discussed constipation being another side effect---so far I had the opposite effect. I did have constipation earlier and my oncologist suggested milk of magnesia. My husband was amazed---that was his dear old mom's solution when he was a boy. He said he didn't know it was still used! But just a tablespoon day or night works wonders for me and in a very short time. Plus I can take anything if it is flavored with mint! I'll keep you posted! And again, thanks! I don't know what I'd do without all the great posts on this site! Hugs, Tricia
TriciaK is offline   Reply With Quote
Old 09-19-2010, 02:09 PM   #4
Chelee
Senior Member
 
Chelee's Avatar
 
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
Re: serious earaches---navelbine side effect??

Hi Tricia,
The pounding in my ears had me worried about heart problems too? The strange thing was it happened only on the 1st three days after my Navelbine infusion. Never happened while I was awake...only after I went to sleep...woke me up each morning between 4:00 & 5:00 AM. It was such loud pounding. I didn't mention that I would also have a rapid heart beat when I woke up. My pulmonary doc actually asked, "are you sure your not just having a nightmare?" (Ridiculous question.) Like you...I wasn't getting much sleep either...it was a real problem for me. I sure hope your onc can find out what's going on and make you more comfortable.

The Navelbine is usually known for causing constipation. So in a sense I think your lucky after what I experienced. HA. It was the worse possible constipation I've ever had in my life! I think Shelia was the only other one that experienced the opposite affect like you are. I'm so glad something as simple a milk of magnesia is doing the job for you. Keep me updated...I curious as to what they say about the pounding in your ears? Have you had a rapid heart beat at times? I'll be keeping you in my thoughts and prayers.

Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
Chelee is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 06:34 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter