Prognosis

jullo234 said:

4th round

Thank you VG , Max and others for your feedback. On Wed Tom goes for fourth round of chemo , hormone , and Xgeva. There is a possibility that he will need 6 rounds of chemo and not 4. I believe that after this round there will be a bone scan to see how effective the treatment has been. My question to you is , do you know what I should be asking the doctor on Wed? This is the first time in about 6 weeks that he will be seeing the Dr and I don't want to miss an opportunity to ask questions that could be helpful. Obviously the chemo has taken a toll but Tom continues to be up for all of the morning and then rests in the Aftn. He keeps himself busy with projects and maintains a positive frame of mind ...

Julia 

 

He has not been face-to-face with the oncologist in six weeks ? This is poor patient care.  Any doctor treating any patient should be available for consultation within a few days of being asked.

I would tell him I wanted a direct update at least once every few weeks.

Some centers use Nurse Practicioners or Physician's Assistants for direct patient interface. These are usually as good as seeing the doctor imself. My friend who died in 2013 of PCa saw only his NP (with me present) for months at a time, so any question you would ask of a doctor, you could just as well ask an NP or PA, if you are seeing such people during his treatments.

I would ask him: are the combination drugs working well ?  They ALWAYS work "some."   MY friend's PSA went from 1,000 to 200 on Taxotere: that was "working," but a man with a PSA of 200 is not doing "well," by any defiinition.   Do not accept a "yes" or "no" answer; make him elaborate.  

Some men in his basic situation live a year, others live 15 or 20 years.  Which way is he trending ?   Some of this will be judgement and guessing, even by the best doctors, but it will give you somehing for the moment.  No guarantees or warranties, but something to lean on for the moment.  Remember: One day at a time.

Two things are very positive: They are finally giving him aggressive treatments, and he is feeling well.

I hope you get good news Wednesday and thereafter,

max

I am sorry that your partner got such bad care with the VA reguarding the PSA score. I was just recently confirmed with prostate cancer also thru the VA. My primary Dr here in Las Vegas monitered my PSA levels and then when it jumped he sent me directly to Urology for a biopsy. The first one in 2009 came up negative and then just a few months ago when my PSA raised again I got another one and they found the cancer. They gave me the option to go to Loma Linda in Ca or go outside the VA, I chose going out of system. I am one of the Lucky ones in a way as i have a very good PCP who understands and takes the time to actually read the tests and talk to me. and some of the VA DRs dont take the time with patients as they have so many. psa scores are just a guideline for further treatment as there are other reasons why a PSA is high. But with your partner and Agent Orange and rising PSA the pcp should have gotten him to urology earlier, but hindsight is 20/20. I really do wish the best for you two and your partner gets better NEVER give up even when it gets bad. You might also want to talk to the Patient Advocate and see if they have a pcp that knows more about agent orange, dont know if it will help but worth a try.  

jullo234 said:

Perhaps the 4th round could

Perhaps the 4th round could be called Chemohell. Up until Wed he was managing quite well with the ability to go out and do things most mornings into early Aftn . Now his appetite is gone and as he lifts the spoon to his mouth he looks off into the distance as if in some other world. It takes effort to get from the sofa to his bed. Perhaps as time goes by it will get better . The Dr. Has stated 6 rounds as clinical trials show 6 as being the most effective. The last treatment being just before Chriatmas.  I did ask the DR if the combination treatments were working well. He reiterated that yes they were because his PSA is now down to around 14 . This is the only measure they use until the 6 treatments are completed. After that there will be a Catscan . Then what ? After all this chemo and a lowered PSA does one go back to living a somewhat normal life ? He will be on hormone treatment for the rest of his life. How long does the PSA stay down and if his cancer is only contained how long before it becomes "uncontained." Is this something the catscan shows? Obviously it must be different for each man.

Best to you all,

julia 

 

 

 

Jullo,

The pending CT will give a static picture of where his tumors are at that moment. Compared to previous scans, that will show how he is trending.

What he will do afterward on HT -- you are correct: "Every man is different."

Some will remain near zero PSA for a long time, even years or a decade or more.  Others will have less success with HT.  Two friends on HT were the latter, and had little successs, and died rapidly (under a year after ending Taxotere).

But many writers here have lived a decade or longer in the same scenario. I will say that his very low PSA curerently has to be a good sign. One friend on chemo never got his PSA below 200, after having been over 1,000.  So it is all relative.

His reaction to chemo that you describe is typical, normal.  I never did chemo for PCa, and was on a different set of five chemo drugs for six months, but there are some side effects that are almost universal for high dose chemos:  Extreme weakness, loss of appetite, and a dozen or more other things that some people just get, and some do not.

After about two months of treatment I slept 15 to 17 hours per day.  My apetite varied a little, but for about two months I mostly just took breakfast drinks and Ensure, no solid food, but I would eat something light like perhaps soup on some days.  Food fetishes (loving only one food, hating everything else) are common, and one of the only thngs I did eat was french fries.  I had a friend who had lymphoma as a youth 30 years ago, and he would not eat anything but pot pie for four months.  Whatever he will eat, give hiim: If he will eat only Hershey bars, give him that, and so forth. He needs calories and whatever energry there is in whatever he will eat. A neighbor, oly in his 30s, did chemo for lymphoma the same time I did. He went from around 300 to around 140...unrecognizable. He did not get out of  bed AT ALL  for months, except to be carried to the infusion center for treatment. WHen I say "carried," I mean it: His room mate was a weight lifter, and had to carry him to the car.  It can be bad, but that guy today, for six years now, is well.

He mightt be receiving Prednisone, a steroid, that boosts energy and appetite in most patients. I was never on Prednisone, but if he is not on it, you might ask the doctor about it.

I have known many guys who entered hell on one side under chemo, and come out the other side months later. Some do not make it to the Exit.  Plus, chemo is not curative for PCa,it is to beat the disease way back so that HT will work better later on.

He (very likely) will be very weak, weaker later than he has been so far.  Expect it.

I hope he has 15 years after this rather than 1 year. Both are possibilities.  I know this is hell for you as well, agonizing.

max

To this:

"The VA doctor said" its just as well it wasnt found earlier because you lived such a high quality of life until now"

I was officially diagnosed 2 years ago with very early stage PC but I would have been diagnosed several years earlier had it not been for a Army medical clinic fouling up a blood test and it being caught in an audit.  The only change in my condition over that period of time is that I would have been worried about it for longer.  My situation isn't nearly as dire as the one described by the poster but there is some sentiment, even in the medical community, that PSA testing and PC diagnosis is "overdone" in the west and leads to all sorts of anxiety and un-necessary treatments with some truly intolerable side effects in many cases.  There is no telling when your partners condition might have been diagnosed and nothing that says it would have made any difference had it been caught earlier.  It sucks.  Good luck and I hope your partner and yourself come out the other end of your shared troubles at a better place in life.   67 is pretty young in this day and age.

Tic,NO,MO,G 8 means that your partner was biopsied and cancer cells were found with needle removing prostate sample (Tic); NO (No cancer cells found in lymph Node), Mo (No cancer has spread beyond the prostate region (ie No Metastasis). Staging apparently is very misleading in some cases. G=Gleason Score by pathologist by comparing the cancer cells with the parents cells to see how different they are. The higher the score the more aggressive the cancer cells. Normally the PCs are very responsive to HT treatment. Keep a positive outlook as I am too in my case.