I am writing on behalf of my husband. PSA after surgery was 0.0. After three months PSA was 0.03 and then 0.2 after six months.
The urologist sent us to radiation oncologist and he had approx 40 days of EBRT (External Beam Radiation Treatment). I can't remember the PSA at the end of EBRT but it was rising after that within six months so then the Lupron started: 4 month depot.
September 2008 PSA - 9.0
January 2009 PSA - 28.0
May 2009 PSA - 1.89
Still on Lupron
September 2009 PSA - 9.18
Still on Lupron
January 2010 PSA - 49.0 Stop Casodex
May 2010 PSA - 152.0 Decided to stop Lupron as HRPC (Hormone-Refractory Prostate Cancer) in play
August 2010 PSA - 210.0
October 2010 PSA - 501.0 start Prednisone 5mg twice a day
November 2010 PSA - 460.0 goes down!
February 2011 PSA - 982.0
When I first posted, I suppose I should have included some good news.
Frank's quality of life is really great. He feels really good most of the time. He still exercises and although he has had to give up golf, he can still fish. He is not working but that is due mainly to complications from a brain tumor that is totally unrelated to the prostate cancer.
I should say that our oncologist has suggested starting chemo but, he understands that we want to reserve that for when Frank has more pain. Right now, the only pain he has is mild from the metastasis in the para-aortic nodes in his lower back. The bone scan last fall was clear.
I am very grateful to have found Yana and the "one man band". Reading stories from others with scary statistics and knowing they are still kicking has been very comforting. Something has been keeping Frank feeling good even with his scary numbers. I believe it is his positive attitude and the fact that he has always been active. He'd probably say its the Mount Gay Rum!
I'm just glad there's only one of us in menopause now!
Well, Things aren't going so well. This is Ann again. Frank has no interest in this kind of communication so I feel that I should share with the prostate cancer community our experience.
About three weeks ago Frank was having some pretty bad back pain that he thought could have been a pulled muscle. I didn't think so. I called the oncologist and they scheduled a bone scan. This pain was so bad, I almost took him to the ER.
Bone scan showed incredible progression of bone lesions: vertebrae, ribs, hips, femurs. shoulders. We are lucky to have a very close friend that is in the radiology group that read his scans. He called me several days before we would have heard anything normally, and told me that things looked not so good. I appreciated that because at this point, We don't want anything candy-coated. Damn! We can deal with it if we know what it is!!!
Bottom line Franks PSA has more than doubled in two and a half months from 980 to 2500. He has significant bone pain. All he can do now is walk on a good day. We have had to hire someone to do the yard work that I can't do. This thing has moved faster than I could have imagined.
Our appointment today with the oncologist left me resigned (because I must make all decisions) to the realisation that Taxotere is our last "bullet".
Frank has said that pain control is what he cares about the most and I think that for anyone in the last stage of cancer, the medical community is very aware of this. They are so great about doing what ever it takes to make sure you don't hurt. So, next week we will need to attend to the left kidney that has been occluded because of the enlarged lymph nodes. This seems to be a common thing at this stage. We will have the urologist insert a stint into the ureter that drains the left kidney into the bladder. This may be all we need to do for this as the chemo should knock the cancer back enough that the lymph nodes will shrink.
I'm so sorry to not have good news for ya'll (I'm from Georgia) What I've been told by doctor friends is that prostate cancer is weird. It can be a kitten or a tiger. Looks like Frank caught a tiger.
When we start the (standard for advanced pc) Taxotere, I will update ya'll on how he does. I am hopeful that it knocks his pain back in a significant way.
Frank finished his third treatment of chemo last Tuesday.
The first went relatively well, although his white cell count dropped quite a bit. After the second treatment, he had a shot for that and within two days was in considerable pain for almost a week. The PSA had dropped to 2,100. I guess that's an ok result.
The third chemo was June 21, 2011 and he is still feeling pretty bad. His legs ache and in his words yesterday he feels (like hell). I do believe that he will begin to feel better after the bones get a break from the injection to make more white cells.
We are in a huge transition to move 500 miles back to Frank's hometown within the month. Our son is with us now to help and getting him back home will be good for all of us.
We will be here to do the fourth treatment but that may be the last. I think his attitude is he is over it. We'll see. The thing with this is every day brings a new vantage point.
I must say that he had some good time between the first and second treatments. He was taking a little walk every day for about two weeks.
When I next post an update, who knows? Things could be much better! That's the thing with this, you know it isn't going to end like you want, but there are victories along the way.
Frank completed three and a half treatments of Taxotere and by mid February it was stopped due to neuropathy in the fingers and toes. His PSA did respond somewhat to a low of around 2000. I realize that doesnt sound low but he truly got a lot of relief from the painful bone mets.
Now, unfortunately, the PSA has surged back to around 5000 and the pain with it. However, we have been going to a palliative care specialty and after some tweaking have found the dosage of Phyntenal that has him very comfortable. The transdermal delivery system works well. It delivers a steady stream of narcotic so there haven't been any peaks and valleys in the pain and we found that keeping up with dosages of oral medication was difficult.
We did consider the Zytiga, but Franks primary concern was pain and as his tumor burden is now so high, we (doctor included) felt that it wouldn't have much significant effect. This pain patch has worked so well Frank has been able to go boating with our son! Three weeks ago I would have never thought it possible. His appetite has improved and he has gained back about five pounds. He'd lost about 30.
Franks prognosis is obviously not good, but, He has a decent quality of life and a great attitude. He sleeps a lot which is to be expected, but when awake, he really is comfortable. I hope this continues a long time.
Frank began with hospice care in mid October and we have been very pleased. I have felt such a relief that we have a partner available weekends and nights to help when he is confused or having issues that require a medical professional. Specifically, these issues include agitation, pain, constipation. These problems are treated well and our hospice nurse is here at least twice a week to make sure we have all the medications we need delivered to the door. no longer do we have to worry that we will run out of some vital medication or make late night runs to the pharmacy. When you rely on opioids, these can be huge issues. In addition, Frank has needed a walker, potty chair, and shower chair that was provided by hospice without me stressing out over ordering, paying and picking it up. Frank is happy knowing that I have a partner in taking care of him.
The complication in his case is his dementia. Whether it is caused by the brain tumor (totally unrelated to the cancer) or the drugs, or the tumor burden, we don't know. He does, however, seem to be less agitated knowing I have help.
In addition to all the practical services, Hospice calls on a regular basis to ask if we need any counseling. These services include pastors, financial services, or physical massage.
In December, we celebrated Franks 60th birthday at the beach with shrimp and oysters all the fixings and a full bar with a huge birthday cake. We have great pictures with him in a silly birthday hat. It was a great day.
Franks journey with prostate cancer is not typical at all. Most men will not die of it. He is one of the very few that becomes a victim. Even now, he is still able to sit up and visit with family and friends and be taken for a ride in the car.
Mercifully, Franks pain is well controlled. The cachexia or wasting away is what is happening now. His appetite is sketchy but the loss of muscle and fat is profound. The biggest concern at this point is a possible spinal cord compression due to his bone mets. He needs help walking and due to the confusion, he can't be left alone at all. Our move back to his hometown a year and a half ago was so great. Our kids are here in town and are with him often. His childhood friends are in touch constantly, and his family are tag team staying with him so that I can get out to exersize or run errands. He's relatively comfortable and has such a wonderful attitude that he amazes all of us and gives all his family and friends comfort so we feel awe instead of sadness. Incredible man indeed.
I am sorry to say that Frank passed away on the morning of March 6 at the Savannah Hospice house. Although the last few weeks were difficult, Frank maintained a positive attitude that was upbeat, strong and brave, rarely complaining and always trying to make other people feel good.
Prostate cancer stole his health but was never able to conquer his character.