I had the surgery on March 15, 2007 and cancer was Gleason 9 and found in tissue outside prostate. I am now now starting radiation - even tough and I have many concerns but I guess we still have to have trust in something that might work.
I hope to ask the doctor about androgen deprivation therapy along with the radiation. The doctors say my cancer is so aggressive my survival rate probably won't be increased with my futher treatment. That is really comforting.
I just finished thirty four treatment of IMRT (Intensity Modulated Radiation Therapy). I guess it's just a shot in the dark that it will help but I had to try something. I hope the radiation doesn't make things worse, if that is even possible.
I'm definitely going to change doctors when my PSA is taken in six weeks. even if the PSA is at the good number I need more support than I am getting from the urologist and oncologists I have now. Most people on line tell me I should be on ADT (Androgen Deprivation Therapy) but my doctors say just wait till the numbers come back. Since my doctors tell me what I'm doing will not help with my survival , I just don't have any confidence with them.
I hope my change in diet and supplements will help with my survival. I have to be positive!!!!!
My PSA rose after radiation so now on to hormonal treatment.
My urologist just uses Eligard nothing else, so finally talked him into getting Casodex but I got it a week after starting Eligard injection.
I have an appointment in January with Dr. Myers hope to get ADT3 with him and much better care than I am getting now.
I get a PSA test around Christmas so hope I get a good present then!
Visited Dr. Charles Myers in Virginia on January 3, 2008 for a consultation. Finally got my triple blockage ADT3. It feels comforting to know I have a doctor who is really interested in helping with my survival. I have a good plan with supplements , diet, and medications.
I return to Virginia in July for my follow-up and then once a year. I probably will only be on ADT3 for a year and then just maintenance after that. I really have not had too bad side effects from the hormone treatment. Just need to exercise more and get off the couch.
I will update later when I get new PSA readings.
My ultrasensitive PSA is now .01 or .02, Depending on Labcorps two different testing they have now. Had my second six month Eligard shot in March 08. Going for my second appointment with Dr. Myers at the end of June. Have been very strict with my diet and supplements advised by Dr. Myers. He put me on 150 mgs. of Casodex from 50 mgs trying to get my PSA; > .01. It is not there yet but close.
My vitamin D level was way low but now is what he wants. Just hope my next PSA will be less than .01, so I can go on the growth arrest program in October. Getting temporary disability from the Veterans Administration for exposure to Agent Orange will serving in Vietnam. They said they will re-evaluate my disability when I go on growth arrest program. The compensation has been a godsend in being able to travel to Virginia to see Dr. Myers. I will update if any changes come up.
Just a quick update , had a good visit with Dr. Myers and PSA; is < .01 finally. He is taking me off in October one year from starting. He said I have reached the benchmarks for survival. Will be just taking Avodart after October.
Stopped the hormonal treatment on Oct. 01, now just taking Avodart plus supplements and diet from Dr. Myers. Psa still <.01 month to month. Just trying to get motivated to start building my muscles back with loss of the testosterone. Still able to work labor intensive job though which is good.
Right now am sick with cold and sinus infection. Have not had any sickness in two years and now this makes me wonder. I had a flu shot for the first time from the VA and then I get sick. I just need to turn down free shots from now on.
Life is good otherwise. My father passed at end of July at age of 97, starting to get better with the grieving. Sure miss him though especially around the holidays. With his good genes and Dr. Charles "Snuffy" Myers maybe I can live as long as him after all.
Went to my Dr. Myers in January and with PSA still <.01 he was very pleased and the next six months are critical.
So bam February PSA .03; March PSA .05; April PSA .04. So I am not in remission after all as my testosterone comes back. Dr. putting me on Celebrex in hopes of suppressing these random cancer cells.
Now hope May brings spring flowers and a lower PSA.
Well just visited Dr. Myers for my six month check up.
My PSA has risen to 0.1 from 0.07 last month. Dr. Myers does not know how aggressively he wants to treat this at this point. He put me on bio-curcumin supplement along with the Celebrex hoping to get some other variant cancer cells.
I worry each month now with my PSA test, where just a few months ago I looked forward when it came back <.01. I feel I will go back on the shot if the PSA keeps rising. Dr. Myers said I did not need to come back for a year now. This worries me - does he think my condition it not going to improve or he just wants to vacation in January like he used to before he had so many patients. I think the latter make more sense.
Have gained weight since off the hormonal treatments where others gained weight while on it. I need to exercise more than just my daily walks. My health spa Bally's shut down so it's either find another gym or do it on my own. Kinda got off my diet and raised my portion sizes so that's a problem.
Well playing more golf and enjoying life which is what is important.
Just returned from Virginia with my appointment with Dr Myers.
He was happy with my progress. He says my disease is arrested with my PSA stabilizing. It's 0.47 now but it's been bouncing up and down for about 6 months. He said it was nice to have a patient like me since most of his patients' cancers have metastasized. He put me on nitrogyclerin patches a few months ago and that has stabilized my PSA.
Well that is about all I have for now.
Traveled to Sand Lake Imaging in Orlando for a scan to pinpoint where my cancer is now. They found it in the left Illac chain of lymph nodes and it is contained. They said I could have that area radiated for a possible cure. So I am off to Dr. Dattoli in Sarasota for two months of radiation to that area starting in June.
I am currently on Hormonal therapy before I start the radiation. I will update my story when I get back from Florida.
Let's see last we chatted I was going to Sand Lake imaging where they found two lymph nodes with cancer. Said they were contained so off to Dr. Dattoli to have radiation to those areas. I was very happy with the treatment and expected to be cured. But that was not to be. Nov.2011 had severe pain in side had a bonescan and they found metatasis in my ribs. So off again to Sand Lake and they did their thing and so I am going back for more radiation with Dattoli in August through September. Will post again with any important finding later. Peace!
It seems that after my visit to Dr. Myers I am in total remission. And off all hormonal drugs. My PSA; has been <0.015 for 5 months now. I lost my wife on Thanksgiving 2012 and still grieving. Just need to get my cardio back to normal and lose some pounds.
Let's see just back from my 6 month visit with Dr. Myers. It seems my cancer is holding steady with my PSA; staying about the same each month. He has put me on Metformin which helps eradicate any remaining cancer. With the loss of my wife and retiring I have fallen into the depression state which I am having trouble getting out of. I have gained about 20 pounds since retiring a year ago. Need to get moving and get some structure in my life. So I am good to go for another 6 months. He said if the Metformin doesn't work he is going to put me on a statin. That's it for now Go Brown"s!
Well I am still here alive and kicking. Dr. Myers has put me on Xtandi because he says my PSA is not going down lower. The only problem is I am having trouble getting it. I contacted PAN organization and they have provided me with eleven thousand to pay for it. I finally talked with a person at my insurance saying it has been approved and someone would be calling me with payment questions. My copay is $1055.00 per month. So hope to get it soon !
I am on second line hormonal treatment with Xtandi. I have been on this for just over a year. But getting someone to pay for this drug has been difficult. My Patient Assistance Network ( PAN ) had covered the $1000.00 copay until October then my assistance ran out but they didn't tell me. So I got a bill from CVS Specialty Pharmacy For two months of copay the day before Christmas. I called PAN and they gave me a number to call to get assistance directly from the Xtandi drug company. I filled out the paperwork and Dr. Myers filled out his part but have not heard back from them. If approved I will get the drug without going through insurance. In the news CVS has said they will stop having certain cancer drugs on their formulary list, which includes Xtandi. This drug has kept my PSA number down after it was rising on first line hormonal treatment. So I guess my continuing fight depends if I can get this drug ! When people read this they will say wow your PSA number is low now. But when diagnosed in 2006 I had a PSA of 1.4 with a Gleason of 8 which turned into a Gleason of 9 after surgery. My type of aggressive cancer does not express much PSA numbers. This is typical of Men who served in Vietnam and subjected to all the Agent Orange defoliant sprayed in country. The sad thing is that the agent orange changes my DNA and continues in the DNA of my next five generations. I battle depression since my wife passed and retired from my job. Other than that I don't think much about what the future holds for me, Just live one day at a time. I did try to go down to Dr. Dattoli and Dr. Bravo to go back through the scans and see where the cancer is and if it can be radiated as before but with Medicare and a Medicare advantage plan it was not covered. If I knew how bad Medicare was I would have stayed working and stayed with my insurance. I did change from a local advantage plan MediGold for Aetna. Dr. Dattoli is in Aetna's network so If I decide to go down in 2017 I will be covered. I am 100 % disabled for my cancer through the Veterans Administration so I really use them for all my medical care except going to Dr. Myers every 6 months. Without them I wouldn't be able to get my bloodwork done every month that Dr. Myers prescribes. So anyway I get my Eligard shot from the VA , avodart from CVS but they only pay for generic and Xtandi from CVS. As my supply of Xtandi runs out in a week I pray that the drug company comes through soon. Oh well wishing everyone a Happy and Healthy New Year !
John's e-mail address is: john-lerch AT sbcglobal.net (replace "AT" with "@")