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Latest Doctor Visit and a real shocker PSA reading

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Posted 4/12/2012 2:18 PM (GMT 0)
Never mind then

Post Edited (gibson00) : 4/12/2012 8:57:03 AM (GMT-6)

Posted 4/12/2012 2:20 PM (GMT 0)
Hi David, I haven't had time to read through the posts here, so forgive me if this has been asked, but at one time you said they were going to do a PET scan. Have they ordered that for you?

I'm sorry to read about you latest psa results, on the other hand, I'm glad to see they're really trying to find where the source of your pain is coming from.
Posted 4/12/2012 2:38 PM (GMT 0)
David -
-sorry to hear the bad news about the new numbers -
-whatever your choice of treatment or absence of such - you have our support - you have chosen your path and pathways in life -
- for some reason, when reading your first posting of this thread - my initial response was - "keep rockin" - you will do your best.
hugs,
Bronson
Posted 4/12/2012 2:45 PM (GMT 0)
Sorry to hear the bad news Dave, you sure can't get a break.


Rick

Post Edited (Ziggy9) : 4/12/2012 10:09:40 AM (GMT-6)

Posted 4/12/2012 2:45 PM (GMT 0)
David...stay strong and positive...I"ll keep you in my prayers,prayer absolutely can work miracles...I fully believe that!
Posted 4/12/2012 2:52 PM (GMT 0)
David, so sorry to hear about the news.  I have no advice -- just sending you positive thoughts, best wishes and prayers.

Tudpock (Jim)

Posted 4/12/2012 3:04 PM (GMT 0)
David: I'm very sorry to hear about your bad report. I will keep you in my thoughts and prayers. Stay positive and take the fight to the next level. I know you will beat it.
Posted 4/12/2012 3:16 PM (GMT 0)
David,

What a disappointment. Wishing you the best as you move forward with your decision-making, and in your treatment protocol.

Juliet
Posted 4/12/2012 3:22 PM (GMT 0)
Deepest respect to you David, continue to follow the course you feel is best for you and continue to do it with great gusto.
Hat off to you Sir!
Susan and Jeff
xx
Posted 4/12/2012 4:42 PM (GMT 0)
my thanks to bud, golf, renee, squirm, bronson, ziggy, icecat, tud, desert, juliet and susan, i feel your positive vibes

sonny, looks like i was determined to win the race for the highest post treatment psa between us, i just passed you in high speed, lol. havent heard about lynn in awhile, hope she is still holding her own.

david
Posted 4/12/2012 6:13 PM (GMT 0)
David,

I am disappointed to hear of the latest PSA test. I agree with Tony that it is getting pretty late to continue with no therapy plan so anything your doctor suggests is probably better than the current plan. But frankly I really don't understand the logic of not even trying HT before Chemo since the latter is likely to have a far greater negative impact on your QOL than the former. It is your decision to make but for sure I would be getting a second opinion on this from another oncologist if it were me. I understand that there may be no really great answers in your situation, hope you make the best one possible.

San Carlos
Posted 4/12/2012 6:55 PM (GMT 0)
David,

I as others have followed your journey. I do not post often but visit the forum frequently to read. Sorry for your news and wishing you and your family the best as you continue your fight.

lewvino

Posted 4/12/2012 7:28 PM (GMT 0)
San Carlos, the side effects of chemo would be harsh, but they would be short term. I am already dealing with severe QOL issues as it it, my dr. is sensitive to that fact. Side effects from HT would be longer lasting for starters. It's not that there isn't any treatment plan in place, it's still a question of when to pull the trigger. It's a calculated gamble at best as to when to pull it. His thought is to shock the cancer at some point, with some powerful chemo, in hopes of stunning and slowing it down. People will argue this point, but the way it was explained to me, HT still has a masking effect, while slowing down PC growth. Neither method is going to give a cure, so it's a complicated choice, and perhaps in the end, the lesser of evils. I have such poor QOL right now, so I am willing to gamble some more on avoiding either choice. We are going to re-group after the latest scans are done next week, depending on the outcome, action may come sooner rather than later. If the doctor was calling for immediate action, I would be heeding his advice, but he's not at this point. I feel that some here get too intimidated by the actual PSA number they are dealing with. Seen folks get all wigged out because their PSA moves up .05 less at the time, and personally, feel that is an over reaction in many cases. My doctor feels that too many men jump the gun on SRT, HT, and other treatments, and admitted that there are doctors that push their patients into treatments before they are warranted. If he were that type, was trying to make money off of me (like the radiation folks did), he has had every opportunity to do so, and he hasn't.

We all have to way out the gambles in our own lives, as long as I feel comfortable with the situation, it's not hurting anyone else.

As far as any other opinions at this point, not real keen on that. I have seen how that goes with some guys here at HW. You see three different doctors and get three different opinions. Then what? Which one is right? My guy is already a specialist in this field, and unless he gives me reason to doubt his advice, or if I were to lose confidence, then of course I would seek others. He has spent nearly a year now on my case, and has invested a lot of time in researching my specific situation.

David

Post Edited (Purgatory) : 4/12/2012 1:34:37 PM (GMT-6)

Posted 4/12/2012 7:31 PM (GMT 0)
thank you, lewvino, appreciate that
Posted 4/12/2012 8:36 PM (GMT 0)
Dear David, sorry about your PSA, but once you start the therapy or therapies, it will be going down, and most likely there will be years between now and another 37 result. Also, wanted to say that when my father had a regular bone scan it identified 1 hotspot, however when he did a follow-up MRI scan, it identified the spot from the bone scan + another smaller one, so although not 100% specific, MR seems to identify more changes than the traditional bone scan. This was MR of the bones. All the best, seems you have a big and extremely caring family on this forum.
Posted 4/13/2012 12:20 AM (GMT 0)
David,

I'm sorry to hear of your latest developments. I only want to continue to convey my thoughts and prayers to you. I continue to wish that you are able to find a favorable development in the near future, you certainly deserve it. You have been an immense support to me personally with integrity and honesty. Only you know what is the best course of treatment for you in consultation with your medical team and I wish you peace of mind in your decision and most of all, a superior outcome.

God Bless
Posted 4/13/2012 12:24 AM (GMT 0)
special lady (like that name, i am married to one mysef, lol) My doctor's opinions of MRI's for this use is mixed. He said he has patients that show up some serious spots, and should produce a lot of pain, yet the patient's feel nothing. He also has patients, that keep coming up with clean scans, yet are plagued with serious chronic pain. He's sees MRI's having a limited use, but still another tool in his diagnositic and treatment bag.

bd - thanks for your support, and care, all of them mean a lot to me, feel kind of less alone when talking with my peers here at HW, as we are truly fighting the same monster, even though it takes on different manifistations among us. my best to you too.

david
Posted 4/13/2012 2:33 AM (GMT 0)
David, I support you 100%. That doesn't mean that I don't want the advise from you and all the others in my threads. That is why I came here in the first place and then somehow began to return the favors. But in this thread, your thread, you have my support in whatever you decide. Best wishes and thank you for sharing your journey.

Greg
Posted 4/13/2012 4:18 AM (GMT 0)
Greg, I appreciate that attitude of yours, that's how we should treat each other here. There are no experts here, I am certainly not one. We are all equal sufferers of the curse of PC, or representatives of someone that has it. My best to you.

david
Posted 4/13/2012 4:41 AM (GMT 0)
"the side effects of chemo would be harsh, but they would be short term."

This is not good information. It's possible that many SE's of chemo can and do become permanent. Most times it is first attempted in small doses and then increased to try to improve cancer control. Docetaxel (Taxotere) and Cabazataxel (JEVTANA) with prednisone (to help ease some SE's) are excellent therapies but there is a very real reason that they are prescribed late in PCa journeys.

Some clinical trials were run on the use of early chemo, I considered it, but the doses in these cases were very light (60mgDL in a median BMI). Most patients would do well with it but the results of those studies is still pending.

David I have some material on these drugs if you would like to have it It was provided to me by Sanofi Aventis. You need to compare SE's and then talk to your doctors...Sanofi Aventis is also the maker of Eligard (an LHRH Agonist) and they always recommend in their literature that chemo should come after HT for QoL reasons.

Note the Side effects listed here:

en.wikipedia.org/wiki/Docetaxel#Metastatic_prostate_cancer

David you are not right about your assessment of SE's between HT and chemo, HT is far less the harsh. For comparative purposes HT is a bunker buster bomb. Docetaxel is a nuclear weapon...

Tony

Post Edited (TC-LasVegas) : 4/12/2012 11:40:22 PM (GMT-6)

Posted 4/13/2012 5:29 AM (GMT 0)
I would also like to point out some sites that can better define what patients need to know about chemo...

www.hrpca.org/chemotaxoteresideeffects.pdf
www.hrpca.org/pnhome.htm
www.cancer.gov/cancertopics/coping/chemo-side-effects
www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000987/
www.taxotere.com/
www.taxotere.com/oncology/professional_resources/educational_materials.aspx

Tony
Posted 4/13/2012 7:38 AM (GMT 0)
David, I am really sorry that you are dealing with such a shocker.

I won't give you any suggestions, but I will tell you a short story about this lady who worried a lot.

Her 49 year old husband was diagnosed only 4 years after they were married. At diagnosis, his PCa had already escaped the capsule, invaded his bladder, his seminal vesicles, his nerve bundles, and several of his lymph nodes were positive. They said he was in really bad shape and even more so, for being such a young guy.

He and his worrying wife wanted the cancer immediately OUT. After all, it was "emotionally" the right thing to do. The Med Onc, Rad Onc, and Uro Onc wouldn't even consider any other treatment than hormone therapy because the tumor was too big. This worrying couple thought "WTH?" We want it out. Well, 4 months after being on hormone therapy, this worrying couple got news that one of the lymph nodes had resolved and the tumor was shrinking.

At 5 months, SEVERAL of the lymph nodes had resolved, and the tumor shrunk off of his bladder quite a bit. So much so, that they decided to knocked it hard with chemo, while the cells seemed weakened. After chemo, he only had 3 nodes still positive, so the oncologist "suggested" a form of consolidation.

MDA is a great place, but to the worrying couple, removing his bladder along with his prostate seemed drastic and didn't really make sense, knowing he would still have to have radiation for everything outside of the knife. When the couple discussed this, the MDA Med Onc said "Look you guys, I really like you two, and I will do whatever you want."

Well, the worrying couple wasn't there to make friends, and while it was nice that he liked them, they felt MDA left too much of the decision up to them at THAT point.

The worrying wife set up 3 second opinions; one with a pretty well known guy out in California. All THREE of them agreed that surgery was not the route to go due to QOL issues, and the additional need for radiation after. All THREE agreed that at this man's stage, that MDA had absolutely done the right thing by putting this 49 year old man on hormone therapy, even though he had a new bride. His new bride supported him completely while dealing with HT side effects.

This young couple told MDA of the other opinions... and again MDA Med Onc said "I told you guys I will do whatever you want." They decided on radiation as a form of consolidation, and that remaining on HT was probably going to be the BEST lifetime commitment, even though the side effects are pretty sucky.

This worrying couple will stick with MDA for radiation, because of their experience level... but after that, they are going to another oncologist who will actually step up and say "Look, you REALLY need to do this," and not leave ALL of the decisions to them. The worriers are mere laymen, albeit educated on the subject... but laymen, none the less. They don't want a doctor who let them choose "whatever" they want to do. They want the option to be able to make choices, but they want the professionals to give solid options, with reasons for each.

Anyway, this young worrying couple despises the hormone therapy... the man more than the lady. He feels like he is not the same man that she married. She feels grateful beyond measure that he chose to put his masculine fears aside and take the hormone therapy TO extend his life FOR her. Their new motto "Life Over Libido."

Sure he has night sweats, but he told the worrying wife that if she could handle her post menopausal night sweats... he could handle his HT sweats. He has a totally new appreciation for his worrying wife's need to keep the A/C at 65 degrees.

This worrying couple just celebrated their 5th anniversary. They didn't celebrate in the usual way... but they celebrated in a way much more grand. They celebrated with their new appreciation for life. They celebrated with HOPE that wasn't there before the hormone therapy worked its magic. They celebrated that his last DRE was "shockingly" improved.

I know this worrying couple will be praying for you. :)
Posted 4/13/2012 7:51 AM (GMT 0)
One more comment...

You said "My doctor feels that too many men jump the gun on SRT, HT, and other treatments, and admitted that there are doctors that push their patients into treatments before they are warranted. If he were that type, was trying to make money off of me (like the radiation folks did), he has had every opportunity to do so, and he hasn't."

Aren't you at MDA also??

Please, don't let the gun jump the man, either. :)

And remember, if he recommends chemo... that's IS his payday. A HUGE one. If you are at MDA, it's roughly $88,000 per cycle and yes that is in US dollars.
Posted 4/13/2012 11:44 AM (GMT 0)
A comment on the chemo dose:

My adjuvant Taxotere (docetaxel) dose is 60 mg/m2 which translates into 117 mg for my body mass x 6 rounds. It appears the standard/typical dose recommend for castration-resistant metastatic prostate cancer is 75 mg/m2 and probably more like 10 rounds. I understand side effect severity does tend to correlate with dose.

 

Posted 4/13/2012 1:44 PM (GMT 0)
Purg,

Sorry to hear that the PSA is up more than you expected. I hope that the next round of testing finds no more surprises for you. It's a crazy ride with lots of hard, personal decisions to make and a lot of times with conflicting advise. I wish you the best in whatever you decide.
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