Zometa update

I have been off of Zometa for a year and a half. After meeting with an oral specialist I have learned that I will never be able to have dental work involving bone exposure for the rest of my life. I am a high risk for Osteonecrosisis of the jaw bone. I am sharing what I learned at my appointment hoping that this may help others in the decision process prior to starting Zometa and other bone strengthening treatments.

   It was always my understanding that if I required dental work in the future that I could stop Zometa infusions and then have dental work completed. This is not the case. Zometa has a half life of 10 years! Really!!!! Ten years. It stays in your bones that long. Research has shown that no patient should be on the treatment longer than 2 years. I was on it for 5. If you have 6 or less infusions you are considered to be low risk for necrosis. 6-12 infusions puts you in the moderate risk category. Over 12 infusions you are definitely high risk for necrosis. My jaw shows bone density consistent with high risk for necrosis.    

   I cannot stress the need to ask questions when making treatment decisions. I cannot stress the need for second opinions. We must also be diligent about researching potential treatments. 

   I have no doubt that there will one day be a ton of misinformed former Zometa patients filing a class action lawsuit in the future. I can already picture the T.V. Commercial. Were you or someone you love taking the bone strengthener Zometa? Have you at your loved one experienced negative side affects? Blah blah blah. Please call the Law offices Cheatem and Steal. You may be entitled to

Compensation.

   On a positive note, I can still have root canals and fillings, cleanings, and routine dental work that does not require exposing bone of the jaw. I will take care of what I have left, fill in the gaps with a partial denture, and hope that I do not develope gum disease. I wonder how long it will take for jaw bone replacement to become common place.

 

   In other news, my knee surgery was successful and after a 5 week recovery I am back at work today. Hawaii was a total blast and I found myself checking into real estate on the big island. We finally got the snowmobiles out last weekend and we tore up the mountains. I have decided that my drug of choice is horse power fueled adrenaline. 

   Life is good, live it large. Todd

February Update

   As the month of March begins I have been told that it is time for an update. I had an oncology appointment a couple of weeks ago and it was rather uneventful. There was no blood work as my Liver and Kidney function must no longer be monitored. I had a PSA test a couple of weeks before so my doctor did not feel that was necessary. He poked and prodded a little, listened to my lungs, and said see you in 4 months. I am not complaining. It just seems so weird. I am simply use to monthly blood draws and appointments. I am use to having my doctor talk to me about what we do next after treatment fails. This is a new chapter in the story and it is very chillax. 

   I had knee surgery 4 weeks ago. I am recovering nicely. It was not a replacement procedure, just a little orthoscopic. clean up of the meniscus. As usual, I am rushing recovery. I tried snow shoeing a couple weeks ago and spent the next to two days on the sofa with an ice pack on my knee. 

   Mandy was worried we would not be able to take the vacation we had been planning for months but everything was okay. We left for Hawaii on the 22nd and returned just last night. We had a wonderful time on the big island. Our youngest daughter was able to join us for a few days and it was nice to see her. The house has been quiet without her living at home. .

   I am beginning to notice subtle changes since going off treatment. Nothing rather shattering. My libido is still in the toilet but I have been having morning glory fairly regularly. That is so weird. My urine stream might be a little weaker. It may also be in my head. My PSA is still at an undetectable level which is nice. I won’t have another blood draw until May. It makes it extremely difficult to write a Prostate Cancer Blog when there is nothing to write about.

   It is 4:30 in the morning and I couldn’t sleep. I don’t know why but here I am sitting in my robe surrounded by cats writing this post. I am sun burned/tanned and peeling and feel fantastic. My inability to sleep must have something to do with time changes and jet lag. We went to bed pretty early Hawaiian time so I suppose that might account for my restlessness.

   Anyway, that is all I have for now. Mahalo

First PSA Since vacation began.

Today I will get my blood drawn for CBC, Testosterone, and PSA! It will be my first since stopping treatment 6 weeks ago. I don’t anticipate any changes but I never really know for certain. I am not nervous. I suppose I am a little curious but that is all. I should have the results by the dinner hour.

  I have been grouchy lately. I have also been short tempered and very impatient. I think part of the reason is that I am in a bit of pain due to a tear in my meniscus. I will have surgery on the 7th to correct it. Here’s to hoping for positive numbers.

My Story in Men’s Health Magazine

https://www.menshealth.com/health/a25305425/prostate-cancer-survival-story/

Please read and share.

Drug withdrawal

   I am a little more than two weeks into this new chapter of my journey with advanced prostate cancer. 16 days ago was the last time I had any Zytiga. I continue to take prednisone daily. It has been a fairly smooth transition. The mild nausea I had grown accustom to is gone. It was never really bad to begin with but it was always there. So far, my adrenal system has not started up yet. I am suppose to begin weening myself off of the Prednisone but when I try I feel extremely fatigued. I will try again in another few weeks. Another positive note is that my mental cognitivity appears to be getting a little better. 

   I had an MRI on my right knee on the 13th. The results came back yesterday and it appears that orthoscopic surgery is in my future. I have what is referred to as a bucket handle meniscus tear. I googled it... I looked at some photos but that is pretty much all I know about it. I know it hurts and surgery will make the pain go away. 

   I have only been under the knife twice in my life. Once for tonsils and another time to remove a bladder stone. I love the euphoric feeling of waking up from anesthesia. Feels like I have slept for a month. 

   It appears old age is taking its toll. Both of my knees are about shot as well as my left shoulder. I have lived long enough to fall apart. It’s kind of wept but that makes me happy.

A new chapter

   I have expressed in the past how difficult it has been to keep my blog fresh when quite frankly, I have had absolutely nothing to write about.. For the last five years, nothing has changed. 

   Finally, I have something to write about. Last Monday at my oncology appointment, my oncologist and I agreed that if my PSA test came back as undetectable again then I would be taken off of treatment. Five hours later, the results were in and once again my PSA was less than 0.01! Tuesday morning was the first day in 63 months that didn’t start with 4  Zytiga pills. I did not receive a Lupron shot at my oncology appointment. Hopefully I will not be receiving one for a long time.

    My last treatment holiday began in January 2010 and lasted for a little over a year. During that time, my testosterone never really came back all that much but my PSA begin to double every six weeks. I went back on androgen deprivation therapy in the early spring of 2011 and have been on it ever since. Currently I have no detectable testosterone in my system. I have not known what it’s like to have a libido in 12 1/2 years. I don’t know what to expect from this treatment holiday so I will be keeping my expectations relatively low. I have hopes! I will just have to see if any of them come to fruition.

   Going on holiday is not without risk. That is the reason my physicians have been reluctant to allow this in the past. You may ask, what has changed? The answer is nothing. Nothing has changed. There are still risks. It is possible that the cancer could mutate and be harder to control in the future. Nobody really knows.

   There are also benefits to a treatment holiday. It is fairly well documented that androgen deprivation is hard on a mans cardiovascular system. Men’s body’s are designed to run on Testosterone. Without it, nothing works as it is suppose to.  An ADT holiday, if it lasts for a while, could help me shed pounds, build muscle, and increase depressed mental cognitivity. 

   So far blnothing feels different. I would appreciate any prayers or positive thoughts Y’all want to send my way. Todd

Bisphosphonates

   If you have bone metastasis or have been on Androgen Deprivation Therapy for any length of time, your Physician may prescribe Bisphosphonates to strengthen your bones and delay onset of osteoporosis.

Bisphosphonates are a class of drugs that prevent the loss of bone density and are used to treat osteoporosis and similar diseases. They are the most commonly prescribed drugs used to treat osteoporosis. Evidence shows that they reduce the risk of fracture.

Bone tissue undergoes constant rebuilding and is kept balanced by (osteoblast creating bone) and (osteoclasts Destroying bone). Bisphosphonates keep bone matter from being absorbed by encouraging osteoclasts to undergo cell death,  slowing bone loss.

The uses of bisphosphonates include the prevention and treatment of osteoporosis , bone metastasis , and other conditions that cause bone fragility.

Bisphosphonates, when administered intravenously for the treatment of cancer, have been associated with osteonecrosis ( Bone Death ) of  the jaw with most cases occurring following high-dose intravenous administration used for some cancer patients. Some 60% of cases are preceded by a dental surgical procedure (that involves the bone), and it has been suggested that bisphosphonate treatment should be postponed until after any dental work to eliminate potential sites of infection. A number of cases of severe bone, joint, or musculoskeletal pain have also been reported. Common Bisphosphonate names are Pamidronate, Neridronate  Olpadronate  Fosamax Boniva Actonel and Zometa. There are others. 

    How doctors prescribe Bisphosphonates has evolved over time. Standard practice several years ago called for monthly ongoing infusions. It was then discovered that patients received the same benefit if they only received an infusion every 4 months. Recently studied have shown patients should receive Bisphosphonates no more than two years. Longer use can lead to bone softening and fracture risks. It appears that after 2 years the drug has the potential to do more harm than good.

   If  your doctor feels you may need Bisphosphonates, it is important to have a complete Dental Examination to determine if you are in need of any dental work requiring bone involvement. Examples include, extractions, implants, and gum tissue grafts. If you require dental work it is important to have it all work completed prior to starting treatment. Bisphosphonates have a half life of 10 years or so and you cannot have any dental work involving bone until the medication is no longer in your bones.

   Bisphosphonates are a very effective treatment and are well tolerated by most patients. They are effective against osteoporosis and treating bone metastasis by slowing the growth of tumors on the bone.