We are 185,857 members in 80 forums discussing 140,261 topics.

Help with Abbreviations

All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Swollen tongue/slurred speech and headaches

Topic: Swollen tongue/slurred speech and headaches

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Apr 21, 2017 06:39AM

LindaE54 wrote:

Hi all,

I decided to post to a larger audience for more input.

My tongue started swelling only on the right side some 2 weeks ago and began having a slurred speech. Constant headaches on right side as well for about one month. I was switched to Faslodex on 17 Feb. of this year. Last week's brain scan is clear but MO is ordering MRI as well. Dentist examined tongue, nothing other than swelling. I will also consult a Maxillofacial specialist next week. I tried Benadryl for a few days with no change. I was in Cuba for two weeks end of March, no issues to report on trip other than mild diarrhea upon return for a few days, no fever.

Any similar experience? Thoughts?

Linda - dx at 54 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant)
Log in to post a reply

Page 1 of 1 (14 results)

Posts 1 - 14 (14 total)

Log in to post a reply

Apr 21, 2017 12:01PM blainejennifer wrote:

Linda,

That's so scary and irritating! I'm happy the brain scan is clear, cause I'll bet your dark thoughts went straight there.

I'm awash with questions: Do you still have tonsils, and do they get inflamed with seasonal allergies? Did they run a white count to se if there was an infectious process happening? Do you have difficulty swallowing? Are any other muscle sets in your body acting funny?

I see that you've had radiation - was it anywhere near this area? Are your vocal chords affected at all? Have you been clearing your throat a bunch?

There's a wild chance this could be a neuropathy. An allergy would have been the easy answer, but you report that Benadryl didn't touch it. Look up "idiopathic angioedema" and see if anything rings a bell for you. Idiopathic is just doctor speak for "we have no idea why this is happening".

My mind goes to nerve damage, because I've had two friends with motor neuron disease who had some presentations like this, but you don't seem to have had nerve damaging chemo. Do you have any bone lesions in your cervical spine area?

Sorry for all the questions. In our family, you would be the topic of a lively dinner discussion. Too many doctors hanging around.

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on CMF Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/27/2012 Taxol (paclitaxel) Hormonal Therapy 6/4/2013 Faslodex (fulvestrant) Chemotherapy 6/30/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole)
Log in to post a reply

Apr 21, 2017 12:29PM pajim wrote:

Linda, my mind goes to a different place than blainejennifer. I wonder if this has nothing to do with cancer. You said you went to Cuba, and had diarrhea on your return. I wonder if you picked up a bug? One that is affecting your nervous system?

Have they run an bacterial/viral screen? Tried antibiotics or anti-fungal medication?

Dx 4/20/2008, IDC, 4cm, Stage IIIA, Grade 2, 1/15 nodes, ER+/PR+, HER2- Dx 2/1/2013, Stage IV, mets, ER+/PR+, HER2- Hormonal Therapy 2/26/2013 Femara (letrozole) Hormonal Therapy 4/21/2013 Faslodex (fulvestrant) Targeted Therapy 2/24/2016 Ibrance (palbociclib) Targeted Therapy 2/26/2017 Afinitor (everolimus) Hormonal Therapy 2/26/2017 Aromasin (exemestane)
Log in to post a reply

Apr 21, 2017 12:55PM LindaE54 wrote:

Hey BlaineJ - thanks for your reply. Interesting case huh? Here it goes:

Tonsils are in and no seasonal allergies, white counts are fine, some difficulty swallowing when eating, no other muscles playing free games. No rads in that area, vocal chords OK and no throat clearing. Never had chemo and yes mets to almost all cervical area. I had a bone scan this week, but no results yet, however CT scan of brain, neck and chest last week show no change to mets in cervical area. Yep, looked up idiopathic edema, doesn't help. Other than the switch from Femara to Fas, no other change in meds or supplement, no change in products I use nor in food. I spoke with AstraZeneca pharma co today and they have no reports of tongue issues with Fas.

Even more mysterious right?!

Linda - dx at 54 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant)
Log in to post a reply

Apr 21, 2017 01:57PM blainejennifer wrote:

Is the swelling tender or just present? Do you wear any sort of dental appliance, or a night guard for teeth grinding? Someone here is pulling for a mechanical reason :)

And, just for fun, ask someone to give you a quickie symmetry muscle test - feel the hand grip on right and left hand and see if there is any difference.

Yeah, we are talking about you. Hope you don't mind.

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on CMF Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/27/2012 Taxol (paclitaxel) Hormonal Therapy 6/4/2013 Faslodex (fulvestrant) Chemotherapy 6/30/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole)
Log in to post a reply

Apr 21, 2017 02:04PM LindaE54 wrote:

Swelling is just present. No dental appliance, no teeth gritting and no hearing aid yet! Nobody around for hand grip but that seems ok. No facial asymmetry either. Go ahead and talk all you want!

Linda - dx at 54 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant)
Log in to post a reply

Apr 21, 2017 04:49PM blainejennifer wrote:

Any meds for high blood pressure?

ER/PR+, HER2-, Grade 3. Stage 4, July 2012. Currently on CMF Dx 5/2006, IDC, 4cm, Stage IIB, Grade 3, 4/12 nodes, ER+/PR+, HER2- Dx 3/2012, IDC, Stage IV, 4/12 nodes, ER+/PR+, HER2- Chemotherapy 6/27/2012 Taxol (paclitaxel) Hormonal Therapy 6/4/2013 Faslodex (fulvestrant) Chemotherapy 6/30/2014 Xeloda (capecitabine) Hormonal Therapy 8/14/2015 Femara (letrozole)
Log in to post a reply

Apr 21, 2017 06:21PM LindaE54 wrote:

Nope

Linda - dx at 54 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant)
Log in to post a reply

Apr 22, 2017 07:08AM bevin wrote:

I am sorry to barge in here but thought my input may be helpful. This happened to me 6 years ago. swollen tongue, one side only, headache was horrific. would not go away, horrible pain along the side of my head above my ear. I had a Brain and Neck MRI as they were concerned of stroke. They found I had Bells Palsy. The 7th nerve was swollen and compressed effecting facial muscles, speech and tongue. I got it after travelling to the JerseyChanne Islands. They don't know what causes Bells Palsy but my tx was prednisone for 3 months and a strong antiviral. Valciclvar 1Kmg a day.  Could you ask your Neuro about that possibility.  My facial muscles we permanently droopy after the Bells Palsy but speech and pain went normal after about 4 days on tx. But if I came off the prednisone would return. Took about 3 months tx. 

Good luck. I hope it was okay that I chimed in.

Age 45, Oncotype 11, Primary Tumor 2.1 cm, smaller satellite tumor nearby Dx 8/8/2010, IDC, 2cm, Stage II, Grade 3, 0/5 nodes, ER+/PR+, HER2- Surgery 8/9/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 10/9/2010 Breast
Log in to post a reply

Apr 22, 2017 07:21AM LindaE54 wrote:

Thanks so much Bevin. I'm waiting for an MRI this time instead of a brain scan and maybe this test will be more specific and show the cause. I can't wait to find a solution to this!

Linda - dx at 54 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant)
Log in to post a reply

Apr 22, 2017 08:15AM cive wrote:

I'm with pajim, maybe you picked up some unusual virus or microbe in Cuba.  I assume the speech slurring is due to the swollen tongue?

Log in to post a reply

Apr 22, 2017 08:24AM LindaE54 wrote:

Pajm - somehow I missed your post. No specific testing was done for bacterial/viral infection but I sure will bring it up. MO is aware I was in Cuba but didn't put any emphasis on it.

Cive, yes, at least so far. Maybe brain MRI will be more specific than CT scan.


Linda - dx at 54 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant)
Log in to post a reply

Apr 22, 2017 02:28PM - edited Apr 22, 2017 02:29PM by ShetlandPony

Regarding your recent travel, perhaps they should consider parasites as well. Parasites can go some weird places and cause some weird symptoms. I would go beyond a cancer center to a university-affiliated teaching hospital in search of an answer.

2011 Stage I ILC ER+PR+ Her2- 1.5 cm grade 1, ITCs sn. Lumpectomy, radiation, tamoxifen. 2014 Stage IV ILC ER+PR+ Her2- 2 cm grade 2, mets to breast, liver, retroperitoneal nodes. Taxol NEAD. 2015, 2016 Ibrance+letrozole. 2017 Faslodex + Afinitor
Log in to post a reply

Apr 22, 2017 06:56PM 208sandy wrote:

Hi there buddy - Bells Palsy sounds interesting - it attacks when immune system is under stress - knew someone who had it years ago in Montreal - think you should see your PCP - not sure onc is the way to go on this. The Cuba trip could be a possibility but it seems half the country goes every year and I rarely hear of anyone getting sick but it's worth having someone run complete bloodwork just in case. Keeping you in my thoughts, S.

Log in to post a reply

Apr 23, 2017 06:18AM LindaE54 wrote:

Hi Sandy, thanks for chiming in. I never heard of anybody who had problems in Cuba either except for the big D once in a while. Hopefully, the maxillofacial specialist I see Tuesday will have answers or else I will see a GP. Hugs to you!

Linda - dx at 54 Dx 11/26/2013, IDC, Left, 1cm, Stage IV, metastasized to bone/other, Grade 3, mets, ER+/PR+, HER2- Radiation Therapy 12/18/2013 External: Bone Hormonal Therapy 12/29/2013 Femara (letrozole) Hormonal Therapy 5/27/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/28/2014 External: Bone Radiation Therapy 8/27/2014 External: Bone Hormonal Therapy 9/24/2014 Femara (letrozole) Radiation Therapy 12/13/2014 External: Bone Hormonal Therapy 2/16/2017 Faslodex (fulvestrant)

Page 1 of 1 (14 results)