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Posted 6/21/2008 12:48 AM (GMT -5)
Hi Everyone!!!

How long and what PSA number is considered to late for treatment to begin? In other words Rick had his surgery 14 months ago and all along he has said no more treatments, I am not pushing him but I try to encourage him to look at his options and now I wonder at what point will it be to late for him to change his mind? If anyone could help with this I would appreciate any input.

Thanks

Diana

Posted 6/21/2008 2:01 AM (GMT -5)
Anniea,
Try to get him to look at the charts on the Yananow site. You can see at a glance experiences sorted by year of diagnosis, age, Gleason or PSA. It may cause him to rethink his approach if he reads of others with the same details. See here www.yananow.net/progress_chart.html
Bill
Posted 6/21/2008 8:29 AM (GMT -5)
Anniea

In my opinion it would never be to late for some type of treatment but the longer he goes the less options he might have.

If he is afraid of radiation, tell him I can say I have so far had 19 photon radiation treatments and about the only thing I can really say is a little upset stomach.

Keep encouraging him to seek further treatment.  If I can help please don't hesitate to ask.  My email is available.

Richard yeah tongue yeah

Posted 6/21/2008 11:26 AM (GMT -5)

Hi Diana,

I'm so sorry for your situation.  I am no expert here, but I have a couple of thoughts.

Rick may get a boost by seeing a counselor who would help him receive a desire to do all he can to extend his life and to maintain a good quality of life.  In other words, is there a counselor who could find out why the desire isn't there for Rick right now and help to restore it? 

I'm sure Gordy, War Eagle, and Tony have thoughts for you about why they are "fighting the good fight."

If Rick doesn't fell comfortable with a counselor, perhaps there is a urologist or radiologist or other health care professional you could find with an excellent "bed side manner" who Rick would trust and one who would be willing to provide engage in a very caring conversation with Rick.

Just some thoughts. 

'Sending all the positive energy your way we can! yeah

Kind regards,

Posted 6/21/2008 11:58 AM (GMT -5)
I to am sorry to hear about the situation you and Rick are facing. I have a couple of thoughts. I realize we are not suppose to promote other sites here at HW, but in the sake of support I have to mention this. There is an organization called Imerman Angels that connects a fighter with a survivor. They do a great job hooking people up and from what I have heard and experienced it is well worth the time to check out. The website is imermanangels.org

Next, I am wondering why Rick feels as though he doesn't want more treatment? As a metastatic fighter myself I can somewhat understand his reluctance, but then the more I think about it I realize how much I enjoy life. Not knowing the dynamics of which you live it is hard to give sound wisdom. I would personally love the opportunity to chat via email or phone. A life is a precious thing to let go of, and I believe Rick has many good years ahead as long as he stays in front of the battle.
Please know I care very much and do want to be of assistance as I am sure many here would.

peace and much love
Dale
Posted 6/21/2008 1:29 PM (GMT -5)
Diana-

Barry was right - I have to put my 10 cents in.

You say Rick said "no more treatments". Unless I'm reading your signature wrong, I don't see where he's had any treatments so far. As a layman, I can foresee only three kinds of treatments in Rick's future - ADT, RT and chemo. I've already been through the first two. I'm overweight by 40 pounds according to the charts and so out of shape that I huff and puff with the slightest exertion and have been like this for many years. I had no ill effects from the radiation (both IMRT and HDR brachytherapy) except some constipation. And, while I realize some guys have more severe SEs from the ADT, mine were very slight - very mild hot flashes (I have a little fan on my desk) a hard time sleeping through the night without a sleeping pill and and inability to stop snacking. I attribute the last two to the ADT, but am not really sure. I've suffered no ED and no incontinence - not a drop. I can't speak about chemo in the first person yet, but I know it's in my future. I've known many people who've undergone chemo and, yes, it does "wipe you out" for a day or two with each treatment. Apparently the nausea can be made to disappear almost instantaneously by placing some new med (sorry I don't know the name) on your tongue.

Sure, sure, I know some people react worse than others. But, I believe we'll all react pretty much in the same way to end stage metastatic prostate cancer. It's pretty horrible. Horrible for the patient and horrible for his caregivers. I think the patient has to consider his caregivers very seriously. In most cases, and certainly in yours Rick, the caregiver has gone all out, heart and soul, with help, worry and consolation. How fair is it to just give up and, in essence, say to your wife that all she's done for you hasn't mattered a bit?

I've been on anti-depressants for a long time. I'd been taking what doctors referred to as a pediatric dose of Effexor for many years before my diagnosis. During the last three years, my doc has doubled the dose twice and I'm very content to stay at this level. I'm not at all embarrassed to discuss it - it's just a med which my body needs to combat an internal imbalance.

about six months after my Dx I started seeing a therapist. I've mentioned Gina before in several of my posts. She's been wonderful for me. In the beginning, when I had the darkest of dark thoughts, and then again when I learned of my mets, she's been the voice of reason. Every time I've done my little "woe is me" speech for her, she's been able to reason me out of my despair.

Rick, I don't think what I've written here is the best I've ever done composition-wise, but I hope I've been able to influence you a little. There are so many new discoveries about cancer being announced every day that I'm convinced if I can keep my cancer under control long enough, a cure will be found. I'm not afraid of dying, but I'm certainly not looking forward to living the last few weeks of my life on morphine. The treatments we have available right now are not anywhere near as frightening or horrible as what the disease can do if left untreated.

If you'd like to speak to me, write a little note here and we'll set something up.

-Les
Posted 6/21/2008 4:13 PM (GMT -5)
Hi Diana,

I am recently diagnosed my self with PCa. If I have read your signature correctly Rick has had removal surgery and is showing signs of continued infection with a doubling time of three months give or take. A conference with his urologist would be a good start. The bone scan is a year old and you do not indicate any lung x ray or results. It might be a good idea to do both to try and determine the location. If still in the immediate area of the prostate he may be able to get radiation to take care of the remaining cancer. Another test to gauge the spread is the Prostascint. It is expensive but in Rick's case may provide a cost benefit ratio. Another approach is hormone therapy. I am on this now as my case was considered advanced. I am having the hot flashes and the libido is fading. Otherwise, not intolerable.

I can empathize with Rick on not wanting to pursue any further treatment but only if the situation is hopeless. It does not appear to be so to me at least. In my own case this diagnosis has had a significant impact on my life plan for the future but I am still planning on having a future. I hope that you are able to get Rick to reconsider his position and sooner is better. There are options available and a knowledgable physician should be able to present those to you and Rick. Without knowing Rick's primary reason for not going further it is hard to advise on what may create a change of heart. In any case I hope that he reconsiders. As stated earlier life is a precious thing to let go of especially when there are or may be viable alternatives.

Good luck to both of you.
Don

Diagnosed 4/10/08
PSA at DX 21.5 (first and only so far)
Age 58
DRE palpable tumor left side
Gleason 4+3
100% of 12 cores positive 35% to 85%
Bone scan and lung x ray clear
No symptoms. Diagnosis resulted from trip to urologist for follow up on emergency room visit for kidney stone. (first time for kidney stone too)
Started Casodex on May 2, 2008 completed June 1, 2008
Lupron (4 month dose) May 15, 2008 plan is for two year regimine
Fiducial seed implants scheduled for June 27, 2008
IMRT to start on July 7, 2008 45 treatments
Posted 6/21/2008 11:16 PM (GMT -5)
To Les and all of you... Thank you for showing what this forum is all about!

I'm sure your words of support and kindness help Diana and Rick know that there are many people, though unseen, who really care.

All the best,

Posted 6/22/2008 4:38 PM (GMT -5)

Hi Everyone,

Thank you so much for your replys and for caring. I probally should have given an explaniation as to why Rick wants no further treatments for his cancer. His prostecromy was his 18th major operation since 1988. He has a long history of heart, back and ulcer problems. He had a triple spinal fusion on his back 1 month prior to his prostate surgery and that operation was a total failure. It left him with one leg shorter than the other and he is now in continueous pain. Just to get thru the day he takes tons of pain meds and the dr has said they can do no more for him. We have tried other drs. and the answer is always the same. His daily life is take pills for the pain, ease the pain but feel dizzy and loopy till the pain comes back and he has to take more pills. All of the males in Rick's family died before the age of 54 due to heart problems and other illnesses he feels that he has had a chance to do everything he wanted to do and has outlived all of his male relatives. I am not by any means saying I agree with his lack of cancer treatment but I do understand that when you wake uo in the morning and the 1st thing you have to do is ease the pain it can get dis-heartening to have a will to fight to live longer. I will always encourage him to treat his cancer but I cannot force him. He has always been a very independant, yet loving man and I can only support his wishes and love and care for him till the end of time.

Thanks Again

Diana

Posted 6/22/2008 6:34 PM (GMT -5)
Diana-

One more piece of unsolicited advice: The Hospital For Special Surgery in New York City. I had spinal surgery there in March of this year to have 3 discs repaired. I was walking on the second day and after they took away my morphine drip (also the second day) I had no more pain and refused all pain pills thereafter and can't say enough good things about that place.

I had the names of 6 doctors in NY and New Jersey, but they either didn't do spines or didn't accept my insurance. So I called the hospital referral line and they hooked me up with the man who was to become my surgeon. I'm so grateful to Dr. Huang for giving me my life back, since I could barely walk before the operation.

If it's feasible for you, I highly recommend it.

-Les
Posted 6/23/2008 11:42 PM (GMT -5)

Hi Everyone,

Thank You again for your replys and caring. Gordy I will try calling them, however many Doctors I have spoke to around the country have said they would not touch him after another Dr. has operated due to lawsuits and after 3 back operations the chances get even less. But thank you for the info.

Warm Wishes

Diana

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