Advanced Prostate Cancer

I have read some of the messages on this site ... I don't find too many that talk about advanced prostate cancer ... Stage IV, metastasized, hormonal resistant, etc ... I would be interested in how people in late stage PC manifest their symptoms ...

I am eleven years at stage IV, and pretty much have run the gamut of the regimens available ... I have a J stent in the left ureter to help with the issue of emptying the bladder ... as the cancer is effecting the pelvic area, and cancer in the spine, and other bone areas ...

I go to the oncologist every week ... and have a urologist that takes care of the bladder issues (J stent replacement)

Anything other's have to share in terms of 'late stage' or advanced PC is helpful to hear ... carry on ...

In reply to what my history has been ... unlike what I read in most of the posting here, I discovered I had advanced prostate cancer after experiencing many, many months of extreme pain. The pain was in the bones, and came mostly at night (I later found out that cancer pain does manifest itself mostly at night) ... that was back in the year 2000. Finally I submitted myself to go to a doctor, and they ordered an MRI ... they quickly discovered that I had multiple tumors, or 'hot spots' in my bones... the one in the spine was giving me the extreme pain.

Intitially they put me in the hospital to evaluate further and to determine if spinal compression was of immediate concern. All this was new to me ... the medical jargon .. PSA, bone scans, prostate cancer was all new to me  ... but, I learned quickly what it all meant .. what they told me was 'they can't cure me, it is too late, but they can buy me a lot of time' ... and time it has been ...

My initial PSA was 4,900 (four thousand nine hundred) ... the initial treatment of Lupron, and radiation to the bones, and some other things brought the PSA down to almost a normal reading for a few years ... eventually, (after a few years) I became hormonal resistant (as all will do eventually) ... for the past 5 or 6 years my PSA level has been between 500 and 1000 for the most part.

I had chemotherapy for 4 years ... taxol, and Cytoxan ... that stopped when I developed 'chemotherapy induced peripheral neuropathy' (nerve damage from the chemo) ...

My lastest bone scan (bone scans are done twice a year) shows increaased activity in the bones ... the bone scans have always come back positive even with the treatments.

The other area of the body that is effected mostly is the pelvic area .. the bones in there, and the mass itself intruding into the bladder causing urinary problems ... that is why I have a J stent in place.

That is basically my story ... I am interested in other people's experience in the symptoms of PC .. most talk about their PSA .. that in itself is not cancer .. it is a specific marker, and indicator of the level of possible cancer activity ... but, it is the symptoms that describe the clinical significance ...

My symptoms continue to be pain to the bones (not as intense as initially) and urinary problems (that is constant) ... I see the oncologist every week.

I am 58 now, this journey started when I was 47.

    Carry on for now ...    Bill

Have you investigated getting into a clinical trial that is evaluating one of the new drugs or treatments? There are 3 or 4 new drugs that have shown great promise..You have already survived longer than most of your peers...Don't quit now!

There are members here who are on or are familiar with the new meds such as:

cabozantinib formerly XL184
MDV3100
TAK-700
Zytiga
Provenge
other off-label medicines

There is some knowledge here. Sometimes the advanced information is not posted every day.

robertcool said...
There are members here who are on or are familiar with the new meds such as:

cabozantinib formerly XL184
MDV3100
TAK-700
Zytiga
Provenge
other off-label medicines

There is some knowledge here. Sometimes the advanced information is not posted every day.

Thank you for the info. ... I am taking Zytiga now. That is the option I took after 4 years of chemo. Zytiga was FDA approved last May. I have seen many new options come along in the 11 years I have been under treatment. I dismissed Provenge as an option. One of the criteria for that is not to be too symptomatic .. I have too many symtoms for that, plus I don't think too much of Provenge as an immune therapy. I know that MDV3100 is in the pipe lines, it is similar to Zytiga (an hormonal manipulation approach) ....

 

Thanks for the clarification. I thought you met with the oncologist once a week!

Mel

billy,

thanks for this link. i had never seen this site before, and i spent sometime this evening on it, and learned a lot. now that my PC is beyond curative hope, i am learning what i can, while working with my oncologist. i have bookmarked it for future use.

david in sc

billy,

zufus very well may have mentioned of this site in the past, but if so, it didn't catch my eyes at the time. i noticed its a very developed and serious site, with a lot of good, solid information. i think it will come in handy in my own situation.

david

mel, you may or may not be correct in your assumption, but my oncologist would differ with you, talking about my case, not yours.

he believes strongly in the danger of rapid PSA velocity prior to dx. My PSA jumped from 3.5 to 4.2 in 2006, a rise of .7 in one year. then in 2007, it jumped to 5.8, a rise of 1.6 in a year, then in 2008, when dx with PC, it rose from 5.8 to 12.3 in a year, a rise of 6.5. then in just 2 months, it rose from 12.3 to 16.3, another rise of 4.0.

according to my oncologist, my urologist, and experts such as dr. catalona, a psa rise of .75 per year prior to dx is "worrisome", and a rise of 2.0 is a serious sign of an unsually agressive prostate cancer. according to those of that school of thinking, there can be up to a 10 times risk of dying from prostate cancer, regardless of your primary and/or secondary treatments. bear in mind, i never had any evidence of infection, and all DRE's came back negative. according to dr. catlona, the average time to death from dx. because of PC can be as little as 7 years.

my oncologist feels i am in that extreme agressive category, and believes that HT would be a short lived venture at best with me, and also why he has put a pretty low number of additional years as a prognosis for me, especially since I am already slightly over 3 years into the PC thing since dx. he feels that within a year or year and a half from now, i may be in a very serious situation, that could develop pretty quickly. so for me, as long as there is no obvious evidence of bone mets, he doesnt feel that now is the time for HT, and thinks possibly, that HT may be skipped over for chemo when the time comes.

my own urologist feels the same way about the rapid PSA velocity school as well, and was not surprised when my surgery failed so fast.

our two cases are very much different when you get into the particulars.

david

I just wanted to say, Henry3rd, you offer many patients and their beloved ones much needed hope. You seem to have a fighting spirit, that has brought you this far. Having to deal with my dad´s strange PC numbers that do not quite match the diagnosis, I agree with you, each case is unique and perhaps that is why you should keep trying, you never know what may work for you. I believe you will find the right answer soon.

Regarding symptoms you mention, I have been amazed over the last couple of years how many people my wife and I know of (either directly or indirectly) who have been diagnosed with advanced cancer of one sort or another where the only symptom that made them go to the doc in the first place was back ache.
No wonder we now get paranoid as soon as we get an ache in our backs or hips etc. I am trying to blame a new mattress for mine.
(The opposite side to this is of course my mum, who had severe back problems/pain since her 20s and died completely free of cancer aged 80 - and I mean completely free too, as they had to perform an autopsy to determine cause of death and found no cancer anywhere.)

Alf

David .. hmm, something to think about .. or not for now. Just prior to my surgery, my PSA went up from 50.9 to 54.9 in in just under 3 weeks.

HI Henry. I am sorry you have to be here bit glad you found us. I was also diagnosed at stage 4. Psa was 3216.12. I have mets in my lungs bones lymph nodes and brain.. i was diagnosed 66 months ago and was told i had a yeear to live. Lupron and casodex have been my primary forms of treatment. I took an 18 month lupron holiday and went on d.e.s. for a year without a great deal of success.my psa was going down at last check but it has been 5 months since i let the vampires draw my blood. I have been inostrich mode for a while and actually blew off my last onco visit. I just turned 48 have a wonderful wife and I still work hardas a pipe fitter welder at a pulp and paper mill in washington state. I have done remarrkably well. What is my secret? First I would have to say faith. 2nd I refuse to be sick. I drink 8 oz. Pomagranite juice daily. I take 6000 i.u. vitamin d3 daily and extra calcium. I also take 5450 mg. Of pau d' arco daily. If you want more info e mail me. I may take a couple days to get back to you but i will reply. Todd