"Sue Saddened Wife" Continuation Thread 2

Sue, as it turns out, Dave’s oncologist’s recommendation to stop PSA testing at this stage is a completely different topic than the PSA Screening Guidelines you mentioned.

Using the PSA test as a “screening” tool (which means for someone who has never been diagnosed with PC) is completely separate from using the PSA test as a “monitoring” tool (for someone who has already been diagnosed and/or treated for PC).  In fact, the key documents regarding the positions on PSA mass screening state very clearly: “This recommendation…does not include the use of the PSA test for monitoring in men who have been diagnosed with or who are being treated for prostate cancer.”

Dave’s PSA was recently being monitored while he was receiving treatment, not screened. As in Dave’s case, it is common practice to stop monitoring PSA after metastasis has advanced to bones and critical organs while there is a shift from curative to palliative care. PSA monitoring is stopped in advanced stages because other measures which you have now become familiar with—blood platelets, red/white blood cell counts, hemoglobin, liver enzymes, creatinine, BUN, etc.—are far more important to Dave’s care to monitor and manage.



Regarding the ASCO Guidelines for advanced cancer care which I posted above (completely unrelated to anything having to do with PSA), I hope that you can internalize them to better understand the background and training Dave’s oncologist has had which provides the foundation for his current recommendations.


Compassionately and respectfully,
-Jack

Jack as a whole the point in am trying to make is that guidlines are just that a guidline, and should never be viewed as law for status quo. The reverence I made in regards to Psa testing is simply the fact that guidlines don't reflect or treat each person as a individual .There is always a exeption to the rule ! Dave is the one out of three who had been sentenced to die at just 64 Standard of Care that is based on guidlines is not looking atthe person living with the cancer. There is always a few who are offered something outside the set treatments who are offered more years of living. I want to make sure every rock and stone has been turned to find every possible treatment that could be for my Dave. No guidline is going to say give it up and expect me to do what it says. There is nothing just ordinary about facing death each and every day like most of us here .A guidline has no human value or emotional connection to it .

Sue, it seems to me that we may have many similar feelings about medical Guidelines, and also the “standard of care.”     Guidelines, I believe , are just that—a written guide based upon the best available medical wisdom and knowledge.   But every patient is an individual, and should not be treated en masse in a one-size-fits-all approach.   Patient and physician should engage in a dialogue weighing the benefits and harms which may uniquely apply to each individual so that an informed decision can be made on the best individualized next steps considerate of the patient’s values and preferences.   The intent of the best medical Guidelines today is simply to construct a framework which enables doctors to more consistently adhere to these solid principles.   I believe that ASCO Guideline I posted earlier is one of the very best frameworks out there; and I say that only after having directly participated in each and every stage of what is outlined in that Guideline in the case of my late wife who passed away from cancer several years ago at age 51.   The “standard of care” is synonymous with “the best proven treatments available.”   Through the various stages of the journey, the “standard of care” for an individual case shifts.   My wife and I also asked about (and investigated on our own) non-status quo, and at various appropriate stages in my wife’s case we were exposed to various alternative experimental approaches in the context of clinical trials. We chose NOT to participate in one, I recall, because (in discussion with the trial coordinator and her oncologist) we felt that the additional travel required would greatly increase fatigue which would be net counter-productive.   We did participate in another one for only a short time because of the nearly immediate harms it caused her, and another for several months until it was demonstrated simply to not be benefitting her in the big picture.     We wanted to be very careful that our hope and expectations did not drive us to do things that were ultimately not in her best interests, given the values and preferences we had discussed—especially given the unproven nature of “off-label”/non-standard of care approaches—and the oncologist helped us to keep that in-check.   When we were not pursuing the alternative, experimental approach, we followed the standard-of-care.   In the very, very end, she could have been prolonged by essentially (I’ll keep it simple here) by a “machine.”   She did not want that; for her, there was no quality of life in that.   The doctors helped us realize “the cancer has won.” It was time to go home.   The prognosis after failed treatments, and the realization that the cancer has won, is stressful to absorb and difficult to discuss.   But I can tell you how extraordinarily valuable it is to have open and honest conversations with the doctor and health care team to express one’s feelings , preferences and concerns .   The health care team is there to help, and many team members have special skills, experience and knowledge to support patients and their families through the loving approach of advanced care, hopefully guided by the Guidelines set forth by the professional society of oncologists.   Respectfully, Jack

Thanks Mel.

Hi all, was going to post while Don was in The Chair but we talked most of the time, which is a good thing. What a full day we had - at Moffitt at 7am and home at 4. Labs, a surgeon who needs to remove a growth on Don's arm which may be attached to a tendon, EKG, Onc, Infusion. I got on HW last night, cried and went to bed.

It's quiet here and there's plenty of reason for that. Seems everyone is quite busy caring for their mates/family but remember to save some of that kindness for yourselves. We all need that, right?

Heres to you and the miracles you make every day,
Susan

Great news, Carol! It made me smile when I read your post. It's like a surprise - you were told there is nothing for Steve but you went ahead anyway, made the call and what happened?! He's in the study!!! Wonderful reward for stepping out and finding a way!

You and Steve will be in my thoughts,
Susan

Hi when Steve had radiation to prostate and lymph nodes he got diarrhea he took Imodium three times a day and that took care of it.  He had to take it for about 10 weeks.  Has Don tried it?   Steve has not vomited for three days.  Yeaaa maybe the steroids are working. One thing about medical attention and treatments it is never ever quick.  Carol

 

Moonlit:

I have found equilactin to be helpful. Not sure if it is available in Canada, but it is an OTC drug.
I think it absorbs the liquid.

I know you've tried stuff that is probably much stronger, but it wouldn't hurt to try this.

Mel

Mel, thanks so very much. I will look into this right away.

And, of course, it's not available in Canada.

Post Edited (Moonlitnight) : 8/24/2015 3:51:27 PM (GMT-6)

142, wondering if you moved to palliative due to your liver or not wanting to have chemo? Or just waiting for reevaluation?
All of us here could take a sixteenth and piece together pretty near a half for you ;)
Carol, that's so exciting. Since Gary and Steve seem to be following common lines, would love to hear how it goes.
Sue, agree with 142, thank you for this thread. How is Dave today?
Antonia and Susan..hope your Dons are feeling good today.
Krissy..get your nose outta that book..we miss you! Jus kiddin. Proud of you for being super woman. Go girl!

142 - Good to see you here. Don had a break in between chemo treatments a while back I think thats a good thing. So during this break try to do things that give you some respite from all of this. I wish you well and hope the next line of attack gives a good result. As you have seen there is lots of info here on how to combat the SE's so keep us updated and there are fighters here who will gladly help you out!

Carol - Steroids can do a lot of good. And yes I know there is a downside. BUT for Don they have been a huge help. Steroids have helped with joint pain when he was on Lupron, Zytiga, Xtandi, and chemo. So, therefore as anyone here can tell you - less joint pain = better ability to move = feeling better physically & mentally. That is extremely important to their mental well being. Looking forward to Steve's trial and hoping for the best!

Antonia - can I send you the equalactin-oral? EM me pls.

Sue - Your thought on why don't they do surgery...I have always wondered about that. Don had the surgery, it had already spread but would he had failed quicker if the prostate left in? Who knows.
I'm so sorry Dave and you are having such a difficult time, Sue, and I hope things ease up for you both.
You both need some good sleep so bad. Thinking of you.

Don is on couch going through The Great Constipation following chemo again. Throwing all the remedies at it we can. Should ease up by day's end. Not feeling great but dealing with it. I love him.

Beth, Lisa, Krissy, Theresa - Thinking of you.

Sending love and hope for a better tomorrow

moonlitnight are you in Reno area? looking for M.O.in close area i don't post much i read this thread often from what i have read i will be traveling ??? keep battling good day to all NEPOL

Thanks for come back Moonlitnights!! medical oncologist =M.O.I AM NOT VERY good at this.but learning i was reading your post you said something that hubby was still working on reno stuff thought i could get lucky and find someone with local M.O. experience. keep fighting don't know what i would do with all the help from this gang of fighters!! good day to all NEPOL