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Old 09-17-2010, 06:56 AM   #1
TriciaK
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serious earaches---navelbine side effect??

I am having really painful earache on both sides, sort of like a really bad toothache, but on both sides of my jaws in and around my ears. I noticed something similar last month when my onc put me on just navlebine, now I just started navelbine and herceptin again after stopping treatment for three weeks for a trip. The pain is constant and excruciating and seems to also be affecting swallowing. I had navelibine with my first 6 months of herceptin 5 years ago and did not have the same problem. I suspect the navelbine rather than the herceptin because I noticed similar but less severe pain after the two navelbine treatments in August. Has anyone else had a similar reaction to navelbine? If it is the navelbine, will herceptin be as affective without it? The BC has returned to the same place it was 5 years ago, in my right lung. I will see the oncologist Tuesday and am scheduled for weekly herceptin/navelbine. Would appreciate any comments or suggestions, as always. Thanks so much! Hugs, Tricia
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Old 09-17-2010, 10:16 AM   #2
ElaineM
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Wink Re: serious earaches---navelbine side effect??

I am sorry you are having pain. Mouth and throat issues are on the side effect list for Navelbine. By all means report the problem to your oncologist. You might want to see an Ear, Nose and Throat (ENT) doctor if your oncologist can't help you with this problem.
I think Navelbine was originally developed for lung cancer, but it can effectively be used for breast cancer. The side effects are supposed to be less intense than some other breast cancer drugs and it is considered to be well tolerated most of the time. Of course each person may experience something different with a drug.
Good luck with the side effects. Take good care of yourself.
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Old 09-17-2010, 11:26 AM   #3
ElaineM
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Wink Re: serious earaches---navelbine side effect??

Here is some information about Navelbine, including some of the possible side effects from the chemo section of our own website at www.her2support.org.

The following side effects are common (occurring in greater than 30%) for patients taking Navelbine:
  • Low blood counts. Your white and red blood cells may temporarily decrease. This can put you at increased risk for infection or anemia.
    Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.
    Onset: 4-7 days
    Nadir: 7-10 days
    Recovery: 14-21 days
  • Nausea or vomiting
  • Muscle weakness
  • Constipation
The following are less common side effects (occurring in 10-29%) for patients receiving Navelbine:
  • Pain along the site where Navelbine was given
  • Peripheral neuropathy (numbness in your fingers and toes) may occur with repeated doses. This should be reported to your healthcare provider.
  • Diarrhea
  • Hair loss
  • Low platelet (these help to clot the blood) counts. This can put you at increased risk for bleeding.
Not all side effects are listed above, some that are rare (occurring in less than 10% of patients) are not listed here. However, you should always inform your health care provider if you experience any unusual symptoms.


When To Contact Your Doctor or Health Care Provider:

Contact your health care provider immediately, day or night, if you should experience any of the following symptoms:
  • Fever of 100.5º F (38º C) or higher, chills (possible signs of infection)
The following symptoms require medical attention, but are not emergency situations. Contact your health care provider within 24 hours of noticing any of the following.
  • Nausea (interferes with ability to eat and unrelieved with prescribed medications)
  • Vomiting (vomiting more than 4-5 times in a 24-hour period)
  • Unusual bleeding or bruising
  • Black or tarry stools, or blood in your stools or urine
  • Constipation
  • Diarrhea (4-6 episodes in a 24-hour period)
  • Lip or mouth sores
Always inform your health care provider if you experience any unusual symptoms.
Navelbine Precautions:

Before starting Navelbine treatment, make sure you tell your doctor, as well as all healthcare providers, about any other medications you are taking (including overthecounter, vitamins, or herbal remedies). Do not take aspirin or products containing aspirin unless your healthcare provider permits this.


Inform your health care professional if you are pregnant or may be pregnant prior to starting this treatment. Pregnancy category D (Navelbine may be hazardous to the fetus. Women who are pregnant or become pregnant must be advised of the potential hazard to the fetus).


For both men and women: Do not conceive a child (get pregnant) while taking Navelbine. Barrier methods of contraception, such as condoms, are recommended. Discuss with your doctor when you may safely become pregnant or conceive a child after therapy.


Do not breast feed while taking Navelbine.


Navelbine Self Care Tips:
  • Apply warm compress if you have any pain, redness or swelling at the IV site, and notify your doctor.
  • Keep your bowels moving. Your health care provider may prescribe a stool softener to help prevent constipation that may be caused by Navelbine.
  • If you experience diarrhea of greater than 3- 5 stools per day, contact your healthcare provider and increase your fluid intake.
  • Drink 2 to 3 quarts of fluid every 24 hours, unless you were told to restrict your fluid intake, and maintain good nutrition. This will decrease your chances of being constipated, and prevent dehydration.
  • You may be at risk of infection so try to avoid crowds or people with colds, and report fever or any other signs of infection immediately to your healthcare provider.
  • Wash your hands often.
  • Use an electric razor and soft toothbrush to minimize bleeding.
  • Avoid contact sports or activities that could cause injury.
  • Avoid sun exposure. Wear SPF 15 (or higher) sun block and protective clothing.
  • To reduce nausea, take anti-nausea medications as prescribed by your doctor, and eat small, frequent meals.
  • Keep your mouth clean with baking soda and salt rinses. You can mix 1/4 tsp. of baking soda and 1/4 tsp. salt in 8 ounces of water, and use as a mouthwash, to avoid or decrease the severity of mouth sores.
  • In general, drinking alcoholic beverages should be minimized or avoided. You should discuss this with your doctor.
  • If you experience symptoms or side effects, be sure to discuss them with your health care team. They can prescribe medications and/or offer other suggestions that are effective in managing such problems.
Monitoring and Testing While Taking Navelbine:

Periodic blood work will be obtained to monitor your complete blood count (CBC). Your doctor will order blood tests and other tests as needed to monitor side effects and check your response to therapy.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 09-18-2010, 11:35 PM   #4
TriciaK
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Re: serious earaches---navelbine side effect??

Thank you for your helpful comments! I did call my oncologist's NP (whom I really like) yesterday (Friday).She thought the problem was indeed with the navelbine. She suspects that my white cells are dropping and causing allergy-like problems. She recommended that I start benedryl right away and if I need to, come right in for my blood tests that day.Since Friday is the clinic's half day it would have necessitated oncolgy nurses staying late. Besides I was dressed in my jammies and it would have taken awhile to get ready. My blood tests are scheduled for Monday anyway, so I opted to wait until then, but started the benedryl right away. The benedryl helped somewhat and along with extra tylenol has helped me get through the weekend with less anxiety and discomfort. I will get the blood tests Monday and then see my oncologist Tuesday, when I am also scheduled to start my herceptin infusion. (Either the onc or the NP see me each time I have herceptin/chemo). It is somewhat up in the air, of course, what the final decision will be about continuing the navelbine with the herceptin or adding something else to raise the WB cells. Has anyone taken herceptin alone? I need to do the strongest defense I can because the chances are very possible that my ejection fraction may start dropping again with the herceptin treatment. I am hoping I can keep it up at least 6 months, and every month longer would be a bonus. There are many variables, but I trust my team. This website is also very valuable to me and the things I share and learn about here give me a lot of confidence. I am most grateful! I'll post here or on the main site when I find out the results Monday and Tuesday. At least at this point I feel I have options! Hugs, Tricia
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Old 09-19-2010, 01:00 AM   #5
Chelee
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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
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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...
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Old 09-19-2010, 01:12 AM   #6
Chelee
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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
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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.
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Old 09-19-2010, 11:44 AM   #7
TriciaK
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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
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Old 09-19-2010, 02:09 PM   #8
Chelee
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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.
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