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Spirituality, faith and religion and their roles in coping, healing and recovery
I am stage 4 dx 6 yrs ago PSA 105 using intermittent hormone ablation until 1 yr ago when I started using prostasol and PSA is nadir plus scans are clear. No idea if this stuff is laced with estrogen but what ever is in it is working. Extensive labs…
Profile Information
- Have you been diagnosed with prostate cancer?
- yes
- What brings you to the New Prostate Cancer InfoLink social network?
- need for connection
- Would you help us grow the network? Would you tell others about it?
- yes
- About Me:
- 64 YO sculptor/social worker: dx stage 4 PCA 7 yrs ago--treated with triple ablation, zometa, diet, supplements. Currently off lupron PSA nadir. using prostasol
Comment Wall (13 comments)
- At 8:10am on March 26, 2009,
Dick McGlynn said…
- I am glad I found this link!
Biking season starts soon.
I would like to talk to you. Can you e-mail me to discuss a project I am working for Gilda's Club
- At 10:23am on January 20, 2009,
Rosa said… - I´m very grateful for your information. His only treatment for necrosis is clohexidina (i don´t know the name in english). Next friday we are going with the doctor and I hope he could stop the actual necrosis. Many thanks to you again for share your experiencia with me. Rosa
pd: don´t worry for writte in english.
- At 4:50am on January 20, 2009,
Rosa said…
- Many thanks for your answer. yes, my husband has jaw necrosis. Zometa was sttoped 3 months ago. And how affect to you in bones when Zometta was stopped? Increase pain? How about the evolution of methastasis? We are waitting now for the result of a ganma, but the pain have increase in the last month. Sorry for all the question but you is the only person I had found with experiencie on it. Many thanks
- At 8:51pm on January 19, 2009,
Chris Graf said… - palettepoet@gmail.com
Your old friend Christine Graf, would love to connect with you and share the healing of ART. I, too, am a cancer survivor.
- At 3:47pm on December 20, 2008,
Rosa said…
- Hello Charles, I´m looking for information about ONJ because my husband after three years treatment with Zometa has it. Zometa was sttoped and now he has a treatement with clorhexidina. I´m very afraid about this matter because I don´t know what will be happen? Could you please tell me more about your experience in bones, pain, jaw.....after supresion of Zometa. Many thanks. Rosa
- At 6:26am on June 10, 2008,
charles roemer said…
- After numerous consultations I had tooth removed. Now it is watch and wait for three months and when it heals I restart zometa.
Charles Roemer
- At 1:14pm on April 21, 2008,
charles roemer said…
- I note Burt Becker's comment, however the protocol recommended by the American Dental Association tells patients to stop taking zometa before oral surgery and the fact that my dentist is already caring for people who have jaw necrosis subsequent to taking infused bisphosphonates and having surgery tells me that where there is smoke there is fire.
Here is a copy of my rredacted letter to the dentist. Thanks Mike for the info:
"Dear Dr._________,
When I last visited you, I thought I heard you say that a lower CTx number is better, but I’ve been doing some research on the Internet and have found some indication that perhaps a higher number is better. Also, Helvi--in trying to make sense out of the two different labs’ results (Quest and Esoterix)--ended up actually speaking with a man Esoterix refers to as its "go to person" for the CTx test who said that anything over 150 indicates a low risk of ONJ and that the higher the number is, the better. To complicate things further, I had an e-mail exchange with Joan Aldrich of the ASCLS (American Society for Clinical Laboratory Science) Consumer Response Team who said that a high CTx number indicates rapid bone breakdown. So I am now confused.
As I see it, I have three problems: (1) prostate cancer; (2) known bone loss and urine calcium, and risk of osteoporosis due to the prostate cancer and the androgen-ablation therapy for the prostate cancer; and (3) need to have a tooth extracted with risk of ONJ. Zometa was given to me to treat both the prostate cancer itself and to head off osteoporosis, but that, in turn, has put me at risk for ONJ.
I stopped the Zometa after my April 13, 2007 infusion, and we have been putting off the extraction to let time pass since then, hoping that that will lower my risk of developing ONJ. Meanwhile, whatever might have been helped by Zometa in the prostate cancer and osteoporosis arenas is not being helped.
My oncologist suggested that I might take myacalcin. I understood him to say that this is an anti-resorptive nasal spray that isn’t as effective as--but also doesn’t have the ONJ risks of--the bisphosphonates. Do you have thoughts about myacalcin with regard to my tooth extraction?
Other questions: Does the root tip become more problematic for removal the longer we wait? Would a CT scan of my head help you better identify the root structure of the tooth so you could remove it with less trauma?
When we last met, I left the office without knowing how the tooth would be monitored for further decay. I continue to use aggressive oral hygiene with chlorhexidine and fluoride and cleaning. Should something else be done? Is there some optimum clinical indication that the extraction has to be performed? If/as the cavity gets larger, does it make surgical removal more traumatic, and, if so, is there then a greater risk of ONJ?
Through a prostate cancer-related website (http://prostatecancerinfolink.ning.com) I made contact with a person (MIke Katz) who, in turn, provided me with the names of Matthew Smith, MD. Ph.D., Assistant Professor, Department of Medicine, Harvard Medical School 617-724-5257; Fax: 617-724-3166; mrsmith@partners.org, whose research focuses on the issues of ONJ in bisphosphonate-treated prostate cancer patients. Dr. Krongrad also referred me to an oral surgeon on Long Island, Salvatore Ruggiero, DMD, (516-775-1818) who evidently has done 30 or 40 extractions in patients like me with various results. Dr Ruggiero may be contacted by e-mail through his assistant Ruth Hand (rhand@nycoms.com).
I have contacted both Dr. Smith and Dr. Ruggiero for information and advice.
Meanwhile, the CTx person at Esoterix is named Rich Kenis. He’s the one who told Helvi that research publications indicate that a value of 150 pg/mL or higher indicates a low risk of ONJ, and the higher the value, the better. He said he’d be happy to speak with my oral surgeon (i.e., you) about this, and he gave my wife his direct line: 818/867-1372.
Sincerely,
Charles Roemer
- At 8:49am on April 17, 2008,
E. Michael D. ("Mike") Scott said… - I note from Burt Becker's comments that he thinks your risk for ONJ may be very small. However, here is what I would like to suggest. After about noon today your time, call 1-800-452-2873. This is the International Myeloma Foundation's hotline. It is staffed by NCI-trained cancer infomation specialists. Tell them Mike Scott told you to call them. Explain that you are looking for an expert on risk for ONJ because of your treatment with Zometa for prostate cancer, but that I thought they might be able to suggest an oncologist or periodontist or similar either in upstate New York OR possibly across the border in Montreal or Toronto. You may have to leave a number, but they WILL call you back.
The one possibility I am certain of in New England is Matthew Smith, MD at Harvard. He is an oncologist who specializes in prostate cancer and bone disease and I know he has studied this issue in prostate cancer patients, but I don't know whether you want to traipse all the way to Boston.
- At 10:33pm on April 16, 2008,
Steve J said… - The incidence of osteonecrosis of the jaw (ONJ) is very small. And bisphosphonates such as Zometa have not been shown to cause ONJ.
They can furnish an opportunity for the condition to develop in the event of a poorly-done tooth extraction that damages the jawbone, poor dental hygiene, and so on.
See this from the FDA website:
http://tinyurl.com/c6kwd
- At 10:21pm on April 16, 2008,
Angie L. Matamoros said… - Welcome to the forum!
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