After experiencing pain to what I thought was my left leg, I went in to see an urgent care doctor. They gave me pain meds, told me to also take Advil and sent me away. Months went by and I was now limping and experiencing more pain. After going in for a massage, the therapist indicated that the pain that I was indicating seemed more like a prostate issue. I then went to my PCD. After receiving the results, he told me that my PSA was the highest he had ever seen, he suggested it was cancer.
After visiting the urologist and starting on Lupron, my PSA began to drop significantly; 98, 10.3, 5.3! I am undergoing Zometa monthly and Lupron every four months. I have gained a lot of weight and feel well overall. Sometimes I cannot believe that I have this disease. I want to live. I will fight for as long as I can. If someone out there has positive feedback regarding prognosis, please share your story. When my urologist met with me, he pretty much said "the cat is out of the bag" "have fun with your family" I don't feel like I am dying, I am still working and living a pretty normal life :(
Just found out that my PSA rose from 5.3 to 9.7. First rise since diagnosis. I am going to do a PSA test in two weeks to see what happens. If it rises, I will begin Casodex. Have some pain to lower back and legs. Went on a trip to Mexico in December and enjoyed the time there with family. I began to drink hard liquor and lost track of myself for a bit. Now I am back on track and ready to continue my fight against this disease.
I just wanted to post to let everyone know that my PSA went down 2 points.
It is not much, but this means that I will continue on Lupron only, no additional meds at this time. I have no clue what triggered the change, but I am so glad. Also, I am curious, if anyone out there feels sensitivity with the cold. My bones feel more achey.... Will follow up in a month when I have my PET scan and new PSA reading. April will mark my one year that I found out of this disease. I hope that there are many more years to come...
Just learned that all my scans look the same as they did a few months ago. They do not show further progression (thank god). My doctor is unable to tell if Zometa is helping to restore bone damage.
Overall, I still feel good. I have gained more weight, have a growing appetite. Only bad news is that PSA did go up again (9.7). I will have my next Lupron shot next month, so doctor wants to see what my reading is at that time, before moving to other meds.
After having an unstable PSA, my oncologist suggested that I wait until my Lupron shot to see what the results would yield. While waiting, my original pain returned! I had not felt any pain in 9-months!! Doctor confirmed that PSA went up to 12.5.
I will now start taking Flutamide tomorrow. I hope this works. I am considering radiation for pain, but I have to wait until my x-rays come back to see what is happening to my right leg.
My daughter is researching alternative medicine in Mexico. Any insight would be appreciated.
My doctor put me on Flutamide and my PSA dropped to 3.5!! The lowest it has ever been. My daughter has pushed my insurance to authorize radiation treatment for my right femur and they finally agreed. The doctor says he is 100% sure that this treatment will alleviate my pain and restore my right femur completely. I am waiting for approval from my insurance. Upon approval I will be receiving a total of 3 weeks of radiation daily. The doc says I must lose 30 lbs. Why didn't the other docs tell me this before???
Will keep you all posted.
End of July. Just finished radiation treatment. Ended up traveling to a different county for treatments because my insurance was too stubborn to authorize treatment near my home,ugh. Thank god for my daughters, they made it happen!
My pain to my right femur is GONE! I feel much better, but still taking pain meds for other aches and pains.
I will have my next PSA reading in two weeks. As usual, will keep updating. This fight is like a roller coaster, but I am grateful for every second that I have. One thing that really changes when you have cancer is that you really do not sweat the small stuff.
Later: Just a quick update to say that my PSA went down to 2.5. Lowest ever, I pray that this lasts for a lonnnng time.
Keep your hopes and prayers up!
Amador's latest PSA is still 2.5.
Just wanted to write a quick update to let everyone know that my PSA is about the same 2.8:)
I hope it stays the same for a few more years.
Not so good news for 2010. My PSA is at 6.5 from 2.8. My doctor took me off of Flutamide and put me on Casodex. if PSA does not go down, may have to start chemotherapy.
Later: Two weeks on Casodex. PSA up to 7.2 :(
PSA has gone up again. Last month it was 7.2 and we switched to Casodex from Flutamide. Now it is at 10.0 and the doctor says it is time for chemotherapy.
Do I have to do it this quickly? I want to try to monitor my diet, but the doctor says nothing will change PSA from going up now. I love red meat and eat it every day, plus sweets and have been drinking more on weekends (only). I have gained 30 lbs since diagnosis. The doctor says I should start chemo and clinical trial asap :(
Any advice, input??
Later: As of today, my daughter has convinced my doctor to put me on Ketoconzole. My doctor (as many of you might have read on Discussion Forum) has been hesitant. I have been experiencing kidney pain.
Left message for doc, but haven't heard back yet. Wish me luck on my journey with keto.
Start chemotherapy and trial this Thursday. I have some pain, but continue the fight. Uncertain about what to expect from chemo, will I be able to work?? Should I take time off of work? etc, etc, etc.
Later: PSA was at 47.0 on the day that I started chemo - it is now 98.0.
It has been a week and my symptoms have been fatigue and nausea. Symptoms set in after day 3.
Have lost a lot of hair. Pain seems to be going away, but I do have typical side effects; upset stomach, tired, metallic taste in mouth, still gaining weight.
Before chemotherapy PSA was at 47.0. After second treatment, PSA dropped to 37.0, now at third session, it has gone up to 42.0. Is this not going to work for me?
Later: I just finished 4th round of chemo. Symptoms have been worsening with every session. My PSA rose 2.5 points to 44.5 ng/ml and the doctor says its too early to tell if chemo is failing.
Will be having new scans to determine if something else is going on. Don't understand why my PSA has not dropped???
My PSA continues to rise even though I have had four chemo sessions. My urologist says that I should stop Lupron because it is clearly not working.
Docetaxel did not work, nor did clinical trial. PSAis at 68. I will have two more sessions of it (total of 7) then switching over to new chemo drug. Doctor says the good thing is that nothing hurts and the cancer is still only confined to my bones. Would love to hear from anyone with similar experience.
Have had seven Taxotere treatments, PSA continues to rise. It is at 89.0 and I am waiting to see what CAT scan reveals before moving on to new line therapy.
I lost my treating oncologist (she moved) and I feel that the clinic is dropping the ball. I have not met with my new doc for over a month. In fact, I haven't met him at all. Feel ok, overall, just shocked that Taxotere did nothing to lower PSA.
I was taken off of Taxotere and went without treatment for two months. Two weeks ago I started Jevtana and I was given a shot of Neulasta; a few days later I was unable to walk and went into ER. They gave me morphine that was seven times stronger than the standard morphine - to no avail! Nothing works, not even pain patches.
A fellow patient on YANA told me about Claritin and after doing research online, I found that there is a strong correlation. My daughter rushed to the pharmacy to purchase and I am optimistic that this will help ease the pain. Currently, I cannot walk and don't know what to think or do. Has anyone experienced this? I also had Zometa the day that I had chemo...
I have no idea what my PSA is. My doctors are very standoffish. The last time I had lab work done PSA was at 98. Why are doctor's so unresponsive?
Thanks again to my YANA brothers for all the support and understanding.
Later: It has been three weeks since I had Jevtana and three weeks since I have been unable to walk. That is really the bad news.
The pain is still difficult to tolerate. I am thinking that I might have some compression issues with my lower back/spine. I had x-rays done last week and I was told that if I need radiation I would either have that or the chemo. My doctor just cancelled chemo and I have an appointment to see him on Monday. I am hoping that it is just that because radiation really helped me with my pain the first go-around.
On a more positive note, my PSA went down a couple of points for the first time in almost a year. Therefore, I am hopeful that Jevtana [This drug was only approved in June of 2010] might help me. I am now looking at the possibility of going on disability. I will wait until I see my doctor on Monday to decide.
The past couple of months have been terrible. I am still unable to walk. I use a cane and my daughters are in the process of getting me a wheel chair, which I am not excited about at ALL. I am going in for a bone scan on Friday and hopefully will begin radiation therapy next week.
Another bit of good news is that Jevtana seems to be working. For the first time in over a year, my PSA dropped significantly. As of today, PSA is 60, down from 98. I had a blood transfusion last week and I am still very weak. Doctor says I am anemic. Anyone out there that fails Taxotere has to look into Jevtana.
I am walking again!!!!! The new chemotherapy has dropped my PSA and my pain is more manageable. As of this Monday (April 18, 2011), PSA was at 47. I am also doing radiation therapy to my femur. My weight is still high, but I am working on dropping a few pounds.
I received this mail recently from Amador's daughter, Grace:
First and foremost, I want to thank you so much for being such a giving individual. You have helped so many people (victims, survivors, families, friends and caregivers in general) by maintaining this site. I believe that my father survived for as long as he did (3+ years) because we learned to explore and understand so many treatments and experiences that so many people discussed on the YANA site.
My father tolerated his treatments very well until he began to experience symptoms that his doctor failed to acknowledge. He was in and out of the hospital with severe back pain, extreme swollen feet, etc., for a couple of weeks. The last time he went in, he was told that he was fine and was escorted out of the hospital. He lost the ability to walk and lost all motor function from his waist down as he was escorted out of the hospital. When I realized what had happened, I called the paramedics and demanded that he be taken back to the hospital and that an MRI of his spine be taken. It was, and although they had assured the family on numerous occasions that all of the scans taken of his back were fine, they finally detected a huge mass in his spine. He did not undergo surgery until a few days later. He was subsequently paralyzed, even after undergoing two consecutive spinal cord compression surgeries.
We tried to adapt after the paralysis. Dad was doing well (considering he was no longer going to be able to walk or care for himself independently) and he had just received his first shipment of Zytiga, a medication we fought so hard to get. After the surgeries, he had multiple bed sores that required surgeries, he had a number of UTI's and things went downhill from there.
We were forced to put him in hospice, but never made it out of the hospital. The spinal cord compression happened in June 2011 and he passed on October 23, 2011. If there is anything that readers can take away from this is - TRUST your instincts and educate yourself. Many doctor's and hospital's see and treat cancer patients just like a nuisance. My father was full of life regardless of his diagnosis. He suffered tremendously the last couple of months before his spinal cord compression and only because his doctor did not take the time to order an MRI.
We all know that spinal cord compression can happen to cancer patients when the cancer is in the bone, BUT this happens to less than 3% of patients because of the awareness that is out there. It is so preventable. Dads 3rd leading cause of death on his death certificate was metastatic prostate cancer and I strongly believe that he would still be here with us today if he had not suffered the spinal cord compression.
God Bless and keep fighting. Cancer does not have to be a death sentence. I am free and available to answer any questions at this email address.
Grace's e-mail address is: firstname.lastname@example.org