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PROSTATE CANCER SUPPORT SITE

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Robert Ellis and Linda live in Maryland, USA. He was 63 when he was diagnosed on April 11, 2008. His initial PSA was 127.0 ng/ml, he does not know his Gleason Score was and he was staged T4. His choice of treatment was ADT (Androgen Deprivation Therapy). Here is his story.

During the month of March 2008 I was having lower back pain. A visit to Patient First. X-Rays and meds for lower back pain. Next day I received a call to see my Primary care Doc. X-rays detected a problem

Saw my Primary care Doctor - he ordered a bone scan …. results I have hot spots in my pelvis and chest area. He then took blood .. PSA was 127 ng/ml. 15 months ago my PSA was 3.7 (Dec 2006) He then ordered a cat-scan.. confirmed hot spots.. organs are OK.. prostate normal size.

Moving right along (whirlwind like) to an Oncologist.. My Oncologist studied at John Hopkins .. confirmed that I have cancer of the bones as a result of the Prostate. Immediately put me on Casodex..10 days later IV of Zometa.

Next week May 9,'08 going to give me a shot of Lupron. Informed me that this is the standard treatment that they do throughout the Country. Going in for a Bone Biopsy on May 1,'08 to be sent to John Hopkins.. Going to meet with one of their Oncologist (referred to by my oncologist)

Since taking Casodex I have had no pain in my lower back or shoulder.. No other health problems such as heart/lung/liver/b/pressure/diabetes etc. My head is still in a fog .. happened so quick. Been reading other individuals experiences . I do not know what is in store as I have to continue on in the treatments.

I was at the gym doing a little cardio last couple of days. I am afraid to lift weights because one of the guys stated that it will make my Testosterone rise .. did not think to ask my doc about that .. got over the initial denial .. ready to go forward .. stopped working two weeks ago and took off till July 1st .. may go back earlier if the meds (Lupron) permits .. everything I read about Lupron scares the s.... out of me.

 

UPDATED

June 2008

 

 

Since my initial diagnosis (PSA of 127) in the second week of April 2008 I have been on hormone treatment. Prostate cancer mets of the bone - ribs, pelvis area and femur.

Started out with Casodex 50 mg one a day ..3 weeks later a transfusion of Zometa and a follow up with a shot of Lupron. Within the first month my PSA dropped 100 points and I have very little bone pain.

My oncology doctor studied at Johns Hopkins hospital and he recommended that I enter a clinical trial that they currently have. I made contact with them and agreed to do so. I do not have a clue what I am in for. So far I am handling the current meds fairly well - hot flushes, knee and foot pain fairly well.

The clinical trial at Johns Hopkins is going to entail me getting a shot of chemo (Docetaxel) along with the current hormonal treatment. I believe the Mayo Clinic is also having this type of clinical trial done. I will be picked at random trial a & b. One will get the Docetaxel and the other will not. Anybody know anything about this type of treatment??? **.

Later: Since I last made an entry, I met with Dr. Michael Carducci at John Hopkins. I am going to enter the clinical trial I spoke of on my last entry. My current Oncology Doctor thinks I am doing "great". No bone pain and no pain meds. Went back to work and doing ok in the gym.

Only discomfort is the night sweats from the Lupron. They get very intense..been having them for the last two weeks. I did have some pain in my right knee and left foot (prob from the Lupron) I have been taking Aleve for that and it seems to work.

Got a telephone call from my Doc today..I had a blood test on June 12, 2008 and my PSA is 5.0. I guess I am doing good. I am waiting to hear from John Hopkins to start my Clinical trial.

After reading about other individuals with the same problem (bone mets ) I have, I sort of feel guilty. Maybe the worst is yet to come for me. I am still on Casodex..61 days now. My Oncology Doc is very upbeat and supportive..he said he has a very good feeling that I am going to do well..does make me feel good..will give another posting once I get into the Clinical Trial or if I have a a change bad or good. I really like this website.

ot to admit that I still consume my share of beer..don't drink till I drop..do my daily six pack or less. Stress of it all causes this I guess..I may have to curtail once I get into the Clinical Trial..depends what the Doc tells me..so far they did not tell me to stop..I am straight up with them about this.

Later: Since my last entry I have made my appointment with Johns Hopkins yesterday. Cat Scan and Bone Scan. Still have Mets and my PSA dropped to a 3.8, as I stated before I signed on for the Clinical Trial. The computer picked me to be in the group treating with Hormone Therapy only, which I am currently on. The other group will be Hormone and Docetaxel.

I do not know what to think about that. I do know that Johns Hopkins is a class act just for the short time I have been treating and testing with them. I am fortunate to reside one hour away.

Will keep you posted as I progress..any input from anybody that views this website is appreciated.

 

UPDATED

September 2008

 

 

Since my last entry I have been to Johns Hopkins for the Clinical Trial.

I was picked for the Hormone (Continued Hormone Treatment) no additional Chemo with it. I met with them in July and my PSA dropped to 3.9. Currently on Lupron, Casodex and Zometa. Just had a shot of Lupron 3rd week of August and blood test.

PSA now down to 1.9. It had been four months since I was diagnosed. I have very little bone pain. I do have minor pain in my right thigh (femur) numbness. Am back to work and in the gym on a regular basis - weight lifting and more cardio.

I have an appt with Johns Hopkins 2nd week of Sept for another Cat-Scan, bone scan and blood work. I am feeling good, however, waiting for the other shoe to drop. I know it is coming, don't know when. I will make another entry if any changes.

Oh yeah - side affects from the Lupron are day and night sweats. Doctor gave me a script for Afflexor but I did not fill it because I read the side affects - do not want to deal with that - it is an anti depressant . I am not depressed -I will have to deal with the hot flushes (sweats).

 

UPDATED

October 2008

 

 

Since my last entry I have had my PSA/Blood work taken twice..went up from 1.9 to 3.4 and as of this date to 9.4..all within a 6 week period. Thought I was doing good until today.

My oncologist took me off Casodex 50mg today thinking my PSA will drop. Still on Lupron and Zometa. Scheduled me for another Blood test/PSA one month from now. He stated that he has another treatment in mind..said he was concerned because when first discovered my PSA went from a 3.4 to a 127 in a year..very aggressive

Will check back in next month.

 

UPDATED

December 2008

 

 

PSA rising after on Casodex and Lupron since April 2008. Went off Casodex Oct 15. PSA continued to rise at 10 pts per week. Started Chemo yesterday 12/02/08 at Johns Hopkins (as of yesterday PSA 55) Entered a Clinical Trial on Chemo due to Hormone failure..here is the deal:

SO-421.."Phase Three (3) of this Study..Docetaxel and Atrasentan versus Docetaxel and a Placebo for patients with Advanced Hormone Refractory Prostate Cancer"

Will be 12 Cycles every three weeks..2 dexamethasone on the morning and evening before Chemo..two morning and evening same day of Chemo and two morning and evening the day after. In addition one Prednisone 10 mg for everyday until the end of the cycle.

Started yesterday and no adverse affects to the Chemo..took about an hour and a half..I think the Steriods jacked me up. Came home last night and got severe pain in my right knee..never experienced knee pain before just lower back pain going down my right leg. Took Hydrocodone and went to bed..pain went away but up all night sleeping wide awake..went to work today and came home a little early..very tired..still got to take my steriods tonight..going to be another sleepness night I guess. I was sort of riding this out pretty good until the Hormone Failure..very little pain considering the progression of the Mets..just got back from deer hunting in W.Va..had no problems..still get the sweats from the Lupron..the cold mountain air was good..people at Johns Hopkins are wonderful and I feel very comfortable there..They treat 150-200 patients with Chemo a day..I felt somewhat fortunate after seeing some of the other patients who are very sick. I also feel fortunate to live one hour away..at least I will be here to see my youngest daughter get married this Saturday..thanks to this website and reviewing other individuals experiences - has made it much easier for me to deal with my problem/disease..I have also had contacts on my e-mail from certain individuals with the same treatment (Hormone) I appreciated that and would like to hear from them again..also others..will keep you updated..they will continue to do blood work as they go and cat-scans/bone scans/x-rays every three months I am still taking Zometa every three weeks .

Robert's e-mail address is: lothar8@clearviewcatv.net

**NOTE: THE REGISTERED TRADEMARK OF DOCETAXEL IS TAXOTERE® WHICH HAS BEEN USED FOR THE TREATMENT OF PROSTATE CANCER FOR SOME TIME NOW.