Jump to content


Photo

panoramic at dentist. ...very odd

cml dentist extra bone?

  • Please log in to reply
15 replies to this topic

#1 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 23 April 2015 - 10:42 AM

Went for my 6 month dental cleaning yesterday. ....no cavities. But. ...my panoramic picture revealed something they had not seen before and wanted me to forward it to my oncologist, which I did. They said it looked like I had hardening of the arteries or calcification(dental office said that). My nurse at my cancer treatment center showed 3 different doc's and said it was not normal but could be my normal? And they don't think it's hardening of the arteries.its the two white spots on the sides of my neck right under my jaw line. Thank goodness because they were talking stroke and everything! They said there going to keep an eye on it but it was to perfect (even) on both sides? Don't you love the nose ring hahaha! they had a good laugh about that! So just wondering if any one else had this experience? ???

Attached Files


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#2 snowbear

snowbear

    Advanced Member

  • Members
  • PipPipPip
  • 176 posts

Posted 23 April 2015 - 11:01 AM

I don't know if it's the same thing, but I have a salivary stone under my jaw.  It was detected by CT scan that my ENT ordered.  Mine is too small to cause problems, but sometimes they need to be removed. 



#3 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 23 April 2015 - 11:03 AM

That's really interesting. I'll ask them? Better then calcified arteries and stroke;)

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#4 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 23 April 2015 - 02:16 PM

Coincidence? Same issue here. Plain old dental X-Ray showed strange bone change in my lower jaw about 6 months before I was diagnosed with cml. Sent me to oral surgeon, biopsies and jaw reconstruction. Turned out to be bad abscess, drain, antibiotics, root canal and new crown finally made the hard lump in my jaw go down. It's weird to me that I wasn't in that much pain from abscess.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#5 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 23 April 2015 - 08:27 PM

Looks like submandibular salivary gland stones.  Interesting Snowybear also has them.  Fascinating.

 

http://www.webmd.com...uses-treatments



#6 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 23 April 2015 - 09:40 PM

Who would I go to with this question if that's what this could be? My doctor at the cancer center? My primary? I don't think going to my dentist about it again would do much. ...after all they're the ones who wanted me too consult my oncologist.do you think they sit to far down my neck to be submandibular salivary stones?

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#7 snowbear

snowbear

    Advanced Member

  • Members
  • PipPipPip
  • 176 posts

Posted 24 April 2015 - 05:55 AM

ENT or primary care doc if you don't have one.  Maybe your primary can make arrangements to have the xray looked at by Radiology.  



#8 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 24 April 2015 - 09:35 PM

My mom who's a nurse and my kids pediatrician have repeatedly said to me, if you have symmetry on both sides it is almost always not something to worry about.
Still interesting, if you figure it out let us know.
Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#9 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 24 April 2015 - 10:47 PM

Calmekucky I have no side affects like they talk about for it to be salivary stones. ....especially as large as they look you would think I would? I guess my nurse showed it to a craniologist who said it was not normal but my normal? I guess that should be expected considering out of 25 million people I don't have one bone marrow match? :) they said my dna strand was super rare? So I guess I'll just keep being rare and unusual:) it has been on my mind so I think I'll just get a second opinion to ease my fears.....

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#10 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 25 April 2015 - 08:32 AM

It is not necessarily fully formed into stones so you could feel it, maybe just a calcification stage.  Because the TKI drugs affect mineral usage in the body they could be related.



#11 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 25 April 2015 - 09:59 AM

Thanks Trey I think I'll get it checked out just to be safe....I'm a worry wort. :)

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#12 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 26 April 2015 - 09:52 AM

I have a fabulous oral surgeon who is a specialist in other disorders affecting teeth or jaw. Maybe a dental specialist? My bone spur became visible due to the abscess but took a specialist to figure out what to do.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#13 Frogiegirl

Frogiegirl

    Advanced Member

  • Members
  • PipPipPip
  • 259 posts

Posted 26 April 2015 - 10:41 AM

Hi Gail! So do you think I would just get a referral from my dentist. It's weird because the cancer center said it was no big deal. ....but when I look at other people's images I don't see the same thing? I hate my high anxiety. ...uhhhggg

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#14 Lisa Lisa

Lisa Lisa

    Advanced Member

  • Members
  • PipPipPip
  • 62 posts
  • LocationNew York

Posted 27 April 2015 - 06:58 PM

I dont know anything about the subject ... just wanted to offer my support to ya. Sending positive energy your way. It is amazing how CML causes us to worry endlessly. Rare and unusual trumps ordinary and common Frogiegal. Hang in there.

Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15

     22%  5/15     0.13% 6/15   PCRU attained 9/15

Initial dose Sprycel 100 mg 3/15  Lowered 80 mg 5/15   Lowered 50 mg 1/16

Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage

Sprycel: Currently 50 mg per day - taken 10 pm

 


#15 Gail's

Gail's

    Advanced Member

  • Members
  • PipPipPip
  • 634 posts

Posted 27 April 2015 - 07:35 PM

I know about worry! I was blissfully ignorant that they even thought it might be bone cancer till they proved it wasn't and told me. I say if you need reassurance ask your dentist for another opinion. Blame it on the confusion after having 3 oncs scratching their heads. If you have a worry, it's ok to voice it.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#16 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 27 April 2015 - 10:47 PM

Hi Frogiegirl,  I have had a hole inside my cheek for 4 years now, it doesn't hurt, I showed it to all my doctors they aren't concerned about it I think it might be an exposed salivary gland according to mr internet. My pcp said I could go to a specialist if I wanted to I said no after 4 years if nothing has happened I'm not going to worry about it.  It appeared after I was on Gleevac for 3 years.

Don't ignore the possibility of blocked arteries. I don't want to scare you but when I was 44 I kept having these annoying things on my left eye( kind of like a grey shade, it lasted about 5 minutes ) I didn't think much of it but I was having TIAs mini strokes for 5 months my left carotid artery was 99% blocked. They did surgery right away but I was real close to having a stroke even at that young age. I get a full work-up every year now, that artery is now 100% blocked and inoperable so I take meds and I guess my blood is rerouted somehow because I'm still here. It wouldn't hurt to get an ultrasound done on your carotid arterys. The docs don't think about that much when your so young,  I was very lucky.  Billie






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users