More Questions About Zometa

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Stage III Breast Cancer

I know about all of the good info coming out about  prophylactic Zometa for  hormone positive breast cancer.  I am going to be having my third infusion next month and feel good that I am on it.  But I've heard that some women are afraid to take Zometa infusions for fear of not being able to go to a dentist.  One woman told me her cousin is a dentist and it's not a good drug to be on.  IMO I think this drug is of great value to women with breast cancer and shouldn' t be scared off from it by a dentist in their family.  Any thoughts ladies?

image

Barb

Comments

  • Flamin_nora
    Flamin_nora Member Posts: 52
    edited May 2010

    I'm with you----discussed it myself with my dentist (who is very respected here where I live) and the conclusion was solidly that the benefits for me outweigh the risks

     Personally I am over the moon that I am having these treatments----Number 2 will be in July. 

  • negirly
    negirly Member Posts: 318
    edited May 2010

    Barb - I am a dentist and I'm taking bisphosphonates.  More is known now than in the past.  There are a small number of people who have problems, mainly after tooth extractions and there is a test (CDX - I think) that can predict who may have issues with healing.  They have found cases of osteonecrosis of the jaw in patients who weren't on bisphosphonates as well.  I have a good friend who is an oral surgeon and very knowledgeable on the subject (he lectures about it) and can provide anyone with his contact informaiton if you PM me.

    Karyn 

  • Marion
    Marion Member Posts: 207
    edited May 2010

    Hello!

    I did infusion number 5 last week.

    I talked to my dentist about the worst possible side effect: necrosis of the jaw.

    He said that necrosis of the jaw was really rare and only happened if there was a tooth extracted and an infection started. He said that he's seen people on bone drugs who got extractions and did not get necrosis of the jaw.

    He said having regular cleanings was fine as well as getting a filling. He did not seem concerned at all.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

    hello all,

    Im seeing the top oral surgeon on OsteoN. I dont have it, but they dont want me to either! I have needed multiple extractions since last yr and cannot seem to pass the C Telopeptide test, AKA CTX. My numbers are less than 150 (135 in May), and have been taking one test every month. The reason is the Zometa takes 2 yrs to leave your system. I had no idea it would take this long.. Im also not a candidate for dental implants because of OsteoN. Dentures are my only option.  Chemo can cause decay and tooth loss.. onco's hardly touch on this subject enuff. Please people--get regular dental checkups and take care of your teeth!

  • clariceak
    clariceak Member Posts: 752
    edited May 2010

    Here's my really stupid question.Embarassed

    Suppose rogue cancer cells are circulating in my body looking for an hospitable place to settle down.  Zometa puts out the unwelcome mat and then they move on to liver. lungs or somewhere worse.  Bone mets seem easier to control than mets in other parts of the body.

    In a very simplistic way, by using Zometa to stop bone mets are we just hoping the cancer cells die on the long hard journey to another body part?

  • andersonsrus
    andersonsrus Member Posts: 39
    edited May 2010

    I am some what thinking of asking for this. I am opteoenia(spelling). Or she may suggest this or Fosamax.

    The bone density  may be worse now since I have been on Arimidec for 5 years. Last Bone Density test was in 2006 and I am having one in July. Is this a insurance issue. Also what is the cost of this since I have to pay everything up to our max out of pocket.

    Also do any labsor other tests  need to run while on this or for a screening  before hand etc.

    I keep all labs to minium if  at all.

  • andersonsrus
    andersonsrus Member Posts: 39
    edited May 2010

    also is a clinical trial

  • KerryMac
    KerryMac Member Posts: 3,529
    edited May 2010

    Clarice - that is a theory I have heard from other people as well. The trouble is, the trials are still underway, so no one really knows at this point. It is just from a "best guess"  that we are getting it now.

    So, some people (like me) think it is worth the risk....but we may be wrong. There is some research that says it has a general "anti-tumor" effect, not just for bones, but elsewhere as well.  I have also heard that rogue cells hide out in the bone marrow, before becoming active again, and Zometa actually kills them, therefore preventing mets anywhere. I am not sure anyone really knows for sure. My Onc's opinion is it certainly won;t do me any harm, ir will protect my bones, and it may prevent a reoccurance. No promises.

    So, at the end of the day, you have to make a decision you are comfortable with.  If I was earlier Stage, I may not have taken it unproven, but being Stage 3, I am grasping at any straws I can.

  • clariceak
    clariceak Member Posts: 752
    edited May 2010

    I'll definitely be taking Zometa and hoping that it protects more than my bones.  I'm trying to decide if I should have a troublesome tooth yanked prior to first infusion.  It needs a crown, but I think starting Zometa quickly takes priority.

  • ktn
    ktn Member Posts: 181
    edited May 2010

    I had Zometa every 3 months X 5 times. I had a bone density test that showed my bones were in the way above average for a 51 year old range!! Now my onco put zometa on hold as she feels insurance may not cover it. It would cost me nearly $2000.00 out of pocket! She said I will have another bone density scan this fall and we will go from there. I'd prefer to be getting the Zometa if I could. Those of you that are....are you getting it every 3 or 6 months?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

    Hi all -  noticed this Zometa topic - I am trying to get my insurance to approve zometa twice a year.

    Clariceak - I asked my onc. the specific question you posted - if zometa inhibits mets to the bones, do the cancer cells just go to the organs, etc.  KerryMac pretty much stated what my onc said -  which is that is seems to inhibit ANY recurrence, not just bone recurrence.

    Hope it becomes standard of care soon - I know it has some scary potential side effects, but the data of reduced risk of recurrence sure looks great. 

  • LindaLou53
    LindaLou53 Member Posts: 929
    edited May 2010

    I will echo what KerryMac and others have said that the theory is cancer cells migrate to the bone marrow first before they set off to other areas of the body.  If the Zometa can prevent them taking hold in the bone marrow it may well prevent distant metastasis to other areas.

    Clariceak I have been on Zometa for over 3 years, will get my 10th dose this July and have had several broken teeth repaired and crowns placed during that time.  Cleanings, fillings, crowns, even root canals should not present a problem while on Zometa, but having teeth pulled, implants or any invasive procedures into the jawbone should be avoided if possible.  When it can't be avoided make sure your dentist gives you antibiotics and monitors things closely, but even then ONJ is a rare side effect.

    Ktn I started getting Zometa every 3 months in 2006 for 6 doses, then went to every 6 months for 3 doses and am now getting annual doses of Zometa.  The standard schedule for taking Zometa strictly for Osteoporosis is once a year but for women trying to reduce the risk of recurrence or mets I believe they are now recommending every 3-6 months for 3 years.

    I am so very grateful my onc had the foresight to start me on Zometa even before any trial data was officially available.  I know my future will always be at some risk but to have already made it this far with 23 positive nodes seems pretty wonderful to me!  I feel the potential benefit of Zometa is definitely worth the risk.

  • penelopejones
    penelopejones Member Posts: 22
    edited May 2010

    Dear KTN... What ins do you carry?  Check others out...

    . I will be starting zometa 1 hr infusion next Tuesday....along with a faslodex injection.  Both of these once a month.  length of time unknown at this time..... Also radiation for 4-6 weeks.  

     Infiltrating ductal carcinoma stage 2b May 20, 2004...chemo, mastectomy...reconstruction left breast only.

    May 25, 2010  Shoulder, sternum and back rib bone recurrence.. What a rotten thing to happen to anyone... I keep praying for strength to endure whatever comes my way and never, ever losing hope... So depressing to think of the future! !...

  • penelopejones
    penelopejones Member Posts: 22
    edited May 2010

    How long do you think you will be on zometa?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    I have also heard what Kerry mentions about the protective aspects of Zometa. So far everything I've heard about Zometa is positive.  My onc is very pro Zometa infusions to help prevent mets.

    image

    Barb

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