Maybe a little more good news?

CypressCynthia
CypressCynthia Member Posts: 4,014 Member
in Breast Cancer #1

The jaw osteonecrosis ulcer may be healing.  I can feel the thing, but I no longer can see bone.  I had Danny look and he can't see the bone either.  On Nov 6th, I see the oral surgeon again, so please send happy thoughts, prayers, etc.  All of my physicians have warned me that this can take months, if not years, to heal, so I am afraid to get too hopeful.

Comments

  • fauxma
    fauxma Member Posts: 3,577 Member
    #2
    Hoping for healing.  It would

    Hoping for healing.  It would be great if it is healing up so quickly so my good thoughts and prayers are that it is doing just that.

    Stef

  • camul
    camul Member Posts: 2,537
    #3
    Glad it seems to be healing!
    Continue to he as hopeful as you wish. Hope is a good thing, and hope based on positive observance is even better. CC, You have always responded really well (except for some of the side effects) to most of the obsticles that this disease has put in front of you. You must be otherwise healthynto keep fighting back the cancer.
    Whatever it is, it works well for you, so if it is your hopeful demeanor, then just go with it.
    Read an older post! Glad you liked the wedding cake! My neice had a 3 layer, decadent chocolate, carrot cake, and red velvet. I had to try all 3! Hest cake I have ever had!
    So happy for younthat you get to plan with yout daughter. That is one thing, along with someone to shop with that you do not get to do with boys!
    Hugs and glad to hear good news.
    Carol
  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #4
    I just looked up this

    I just looked up this horrible problem you have.  Hope it continues to heal, sounds painful.  May be you may break the rule of long term healing.

  • ladyg
    ladyg Member Posts: 1,577
    #5
    There are always exceptions

    There are always exceptions to the rules. I hope that you are one of those when it comes to your healing. I am sending you positive energy to help you along.

    Hugs,

    Georgia

  • Josie21
    Josie21 Member Posts: 382 Member
    #6
    camul said:

    Glad it seems to be healing!
    Continue to he as hopeful as you wish. Hope is a good thing, and hope based on positive observance is even better. CC, You have always responded really well (except for some of the side effects) to most of the obsticles that this disease has put in front of you. You must be otherwise healthynto keep fighting back the cancer.
    Whatever it is, it works well for you, so if it is your hopeful demeanor, then just go with it.
    Read an older post! Glad you liked the wedding cake! My neice had a 3 layer, decadent chocolate, carrot cake, and red velvet. I had to try all 3! Hest cake I have ever had!
    So happy for younthat you get to plan with yout daughter. That is one thing, along with someone to shop with that you do not get to do with boys!
    Hugs and glad to hear good news.
    Carol

    Hi CC

    Happy thoughts and prayers coming your way CC.!! I could not say it any better than Carol.  Please continue to be as hopeful as you wish.  It's working!

    Keep the good news coming,

    Ginny

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #7
    RozHopkins said:

    I just looked up this

    I just looked up this horrible problem you have.  Hope it continues to heal, sounds painful.  May be you may break the rule of long term healing.

    What is weird about it is it

    What is weird about it is it rarely hurts!  The ulcer of osteonecrosis is different than a usual mouth sore.  A mouth sore is over soft tissue, not hard bone.  This ulcer is located over my lower jaw bone way at the back.  I just felt it with my tongue and, when I looked at it, it looked like a regular mouth ulcer.  Something about it was making me nervous though because I immediately called my dentist.  He told me it was suspicious for osteonecrosis and immediately took photographs and emailed them to my onc and an oral surgeon.

    The oral surgeon confirmed that it was osteonecrosis and I have been on chlorhexidine rinse since.  First, I had to rinse my entire mouth for a week.  Now, I am just applying the rinse directly to the ulcer with a toothette (a small sponge on a stick).  This is because the rinse can turn your teeth brown - ugh!

    Of course, the bisphosphonate, xgeva, was stopped.  I had been on bisphosphonates almost 5 years when I was first diagnosed with rib mets.

    I was very aware that this was a risk and the longer a cancer patient is on zometa or xgeva, the higher the risk.  It is very important to maintain good oral hygiene and I have been fanatical about flossing, brushing and mouthwash.  I have seen my dentist every 6 months since (except this past time was 8 months because of my low white blood count).

    Would I take xgeva or zometa again?  Absolutely!  They have done such a great job with my ribs.  In fact, if I ever get the ok, I'll try again, as long as it helps.

    This was long (probably tmi...lol), but I hope it helps someone else to be vigilant.  My advice is don't quit the drug but do be watchful and conscientious.

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #8
    camul said:

    Glad it seems to be healing!
    Continue to he as hopeful as you wish. Hope is a good thing, and hope based on positive observance is even better. CC, You have always responded really well (except for some of the side effects) to most of the obsticles that this disease has put in front of you. You must be otherwise healthynto keep fighting back the cancer.
    Whatever it is, it works well for you, so if it is your hopeful demeanor, then just go with it.
    Read an older post! Glad you liked the wedding cake! My neice had a 3 layer, decadent chocolate, carrot cake, and red velvet. I had to try all 3! Hest cake I have ever had!
    So happy for younthat you get to plan with yout daughter. That is one thing, along with someone to shop with that you do not get to do with boys!
    Hugs and glad to hear good news.
    Carol

    Carol, you are a sweetheart

    Carol, you are a sweetheart and I am praying hard for you.  I honestly don't know why I keep responding like I do.  No matter what, I try and walk some every day and try and keep my weight down. I am very adherent to therapy, but so, so many others are too.  

    I sincerely believe I have been fortunate with good healthcare and a responsive cancer.  Not that it has been easy battling 3 mets...lol.  But I am aware that I am what is now called an "outlier", someone who lives longer than expected with cancer.  So many wonderful kindreds have lost this battle and I miss them and wish there were more answers. 

  • grannabeth
    grannabeth Member Posts: 95
    #9
    So glad to hear this news

    CC, I am so glad to hear this news from you.  You are a fighter and we are praying that you will continue to heal.  Hoping is is healed so you can really enjoy the cake at the wedding!!! Keep your hope alive.

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #10
    pixie dust heading your

    pixie dust heading your way..

    Denise

  • SIROD
    SIROD Member Posts: 2,194 Member
    #11
    Hoping

    Hoping that you are correct and that it is healing quickly.

    Hugs to you,

    Doris

  • RozHopkins
    RozHopkins Member Posts: 578 Member
    #12
    CypressCyntjhis could you

    CypressCyntjhis could you help me

     

    looks like diagnosed with Chronic Fibrosing Osteomyelitis and Ischemic Bone Disease of the jaw.  Originally thought TMJ.  Just feel sick as this been going on for a long, long, time.  No lesions yet but another X-ray before final treatment to be discussed. May have had before chemo etc or have been exacerbated by chemo and Tamoxifen.  The jaw is misaligned and painful to sleep on.  All began with sensitive teeth, route canals, nothing stopped pain because it was the jaw not the teeth.  Any info would be appreciated.  Does is ever end.

  • New Flower
    New Flower Member Posts: 4,294
    #13
    RozHopkins said:

    CypressCyntjhis could you

    CypressCyntjhis could you help me

     

    looks like diagnosed with Chronic Fibrosing Osteomyelitis and Ischemic Bone Disease of the jaw.  Originally thought TMJ.  Just feel sick as this been going on for a long, long, time.  No lesions yet but another X-ray before final treatment to be discussed. May have had before chemo etc or have been exacerbated by chemo and Tamoxifen.  The jaw is misaligned and painful to sleep on.  All began with sensitive teeth, route canals, nothing stopped pain because it was the jaw not the teeth.  Any info would be appreciated.  Does is ever end.

    I had a consultation on Monday

    Hi Had a consultation on Monday for the similar issue. Panoramic X-ray did not show anything significant. Since I do not have an open bone, it is not a Jaw necrosis yet. However I have a mibility (not sure if term is correct) in wto teeth. Going to my primiry dentist who will try to stabilize them following to discussion  recommendation with UCLA professor. i will post when I learn more.

     Sorry Roz that you are having pain

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