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.
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??? [The registered trademark of Docetaxel is Taxotere® which has been used for the treatment of prostate cancer for some time now.]
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.
Got 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.
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 effects 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).
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.
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.
Since my last update I have completed two infusions of Chemo/Taxotere. My third one will be on January 13, 2009. When I first started the Chemo/Clinical trial my PSA was at 52. After the first treatment of Taxotere my PSA dropped 30 points to 22 within three weeks.
The first treatment (1 of 12) went fine. The 2nd treatment knocked me down for a couple of days. Tired - sleeping in until 10.00 hours - had to drag myself to the gym etc. Within 7 days I was back to normal - feeling good etc. I suffered memory loss in addition to being tired. I have pain in my ribs both sides - very tolerable - still on the Lupron (with the sweats) and still get Zometa.
I read David Emerson's blog - he and I have exactly the same problem and on the same trial. We even experience the same side effects.
Since on Chemo I have had to have a little life style change. - very little alcohol intake - some red wine - stay at home away from certain temptations. I feel good considering the diagnosis (my Doc at Johns Hopkins said I had some progression mets/bone scan.
Will keep you updated as I progress/regress - either one.
Went to Johns Hopking for my 4th treatment of Taxotere Tuesday Februray 3, '09. To my surprise it went up one point. During the last week I have had some tolerable pain in my ribs and lower back. PSA went from a 16 to a 17.
Tomorrow February 6, '09 I am going to get my Zometa and Lupron. I just started taking Effexor 75 MG because of the sweats. Although my Oncology Doc prescribed the drug (anti-depressent)for me in October I elected to start taking them yesterday. Since taking them, one yesterday morning and one this morning I have had only two outbreak of the sweats.. I was getting as many as two dozen outbreaks a day or better..some very severe..I hope this continues, however, I am very suspect..the Johns Hopkins Doc says I am cruising and doing good on the Taxotere..just an update..
Next week February 17, '09 going to go in for bone scan,x-rays and cat-scan..see what my mets are up to..
For the last 11 days I have been taking Effexor 75 mg for hot flashes due to the Lupron Shots. I was getting them day and night. Some were severe. Since taking the Effexor, one a day, the hot flashes/sweats dimished by 90% The hot flashes I do get now are not as severe and very tolerable. I don't even get them at night any more. My Doc at J. Hopkins suggested I use Effexor...
Due to the use of Taxotere my tearducts scarred over and I had to go to the Wilmer Eye Clinic for surgery. They put stents in my left eye tear duct and will do the right one soon. I have an appointment with them on April 8, 2009.
In addition, my PSA is still going up..it is currently 43.0 as of March 24, 2009. Johns Hopkins may be taking me off of the trial if it continues to go up.
I feel pretty good with the exception of the weakness of the Taxotere 3 days after the therapy. It last for approx 4 days. In addition to the above, I gained 12 lbs. I was informed that this is due to the steroids (Prednisone and Decrodrone)
If they take me off of the trial, my Oncologist is thinking about putting me on Mitoxantrone another Chemo...
On April 14, 2009 I went in for treatment # 7. Got my bloodwork done and my PSA rose to 54. 13 pts in 3 weeks. Some numbness in chin and bottom of right foot from Chemo treatment 6.
On May 5, 2009 went in for treatment # 8. Got bloodwork done and PSA still rising..67.4. Seems like it is steady going up 10-13 pts per treatment.
Going to look at my bone scans on May 19, 2009 before making a decision to take me off of the trial. Some lower back pain from slip disc (I think??)..Still have numbness in left side of chin. Numbness left right foot. Just weakness for 4-5 days after the Chemo and I feel good. Got a little Chemo brain going also..been sleeping pretty good..help of Oxycodon 5 mg. Still taking Effexor 75 mg for the sweats. Best thing I did. Knocked out 75 percent and knocked out 75 percent intensity. Do not have to have the ceiling fan on anymore.
My Doc seems to be more concerned then the Clinical trial Docs????
During the latter part of May 2009 had to get off of Zometa - jaw lesion etc.... On last visit at Clinical trial on June 17, 2009 my PSA was 130. Taxotere not helping - it was the ninth treatment and they took me off of the trial.
In addition, they did an MRI and found tumor pushing on my tri-gem nerve in skull and also a tumor on my spine between 1-3. Currently having brain radiated and also spine. Off of Chemotherapy for now. Going to go back to Chemo a new type on July 6, 2009.
My whole left side of face is numb and my quality of life now sucks. Hard to eat etc. I've been very weak from Radiation and chemo.
Trying to get thru this.
Sadly, we received this message from Robert's family:
It is with a heavy heart that I announce the passing of my father Robert Gene Ellis. He passed away peacefully on September 2, 2009 after an incredibly brave battle. My father never gave up and never lost hope - he fought with all he had. My mother, his wife, Linda was by his side when God called for him.
It is very important that I pass along what an amazing husband, father and friend he was - he was a great man and certainly did not deserve this. It is also important to me - as I know it is to him - to tell you all to never give up hope - be the exception and not the rule - fight with all you have and live each and every day as fully as you can surrounded by the people you love most in the world.
I also want to thank everyone who reached out and supported my dad throughout this horrible ordeal - he appreciated and prayed for each one of you. Take care and good luck.