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Re-cap of today's Oncologist Visit

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Posted 10/25/2012 1:17 PM (GMT 0)
Jim - I have overloaded the VA with letters and info and such since I filed in 2009. I wasted 1 1/2 years fighting with the VA in SC, before they were forced to send my claim directly to Washington. It's been in a pile waiting to be processed ever since. When the VA county agent checked for me about 2 months ago, she found the person responsible for my file. The problem they claim, that as of 2012, they were still processing claims in 2005. Still 7 years behind!. This is after waiting almost 3 years at that time.

So the agent talked to the person in DC, and was told, that if I send them my summary papers from Social Security Disabilty (which is very compelling) and a letter from my oncologist stating my conditon and prognosis, they would forward this info to the person in DC, and they promised to expidite my claim based on "hardship issues".

I should have the letter from my dr. early next week, then I will take the material to the agent, and get it sent off. I've been told by the agent, that in thes cases, you will get quick approval in 90% of the cases.

Three plus years of back "pay" will be nice to get if this happens.

david
Posted 10/25/2012 1:27 PM (GMT 0)
squirm - i trust my doc's choice on the lexapro. the antidepressent effect will be good for me too, according to my wife. there are all kinds of secondary uses for specific drugs, my dr. knows what ails me, so we will see, if i dont like it or if it doesnt help, i will drop it. he wants me to try it for a full month first

alf - the doc feels the nerve damage is very well spread and distributed, due to the severe radiation damage, and none of will show up even with the most sensitive scans. he said it was extensive enough to where its not reasonable that it will ever heal itself, he considers it perm. in nature

river - it would be a strict diet change, i can only hope it comes back, at least it would be a firm answer and a solution would be there.

sephi - the first gastro dr. said all kinds of thing that didnt pan out. he never drew any blood, so how could he rule out celiac? i didn't realize that at the time. my oncol is still furious with that doc, and felt bad for sending in to me. thats' why my doc ordered the celiac test on the spot, as it would be a quick dx, with a solution possible through diet. he thought that with all the trauma i have experienced the past 12 years, that it made sense.

i wont be getting psa tests every 2 months, even though he is moving up his visits. he doesnt see the point of freqent testing as some men get. i would imagine that he will still stick to 6 month psa testing as we have done in the recent past. however, i guess that will depend how much it jumps up from this latest test. i should have an answer later today on that psa result

david
Posted 10/25/2012 9:44 PM (GMT 0)
You've got a lot going on David. I especially hope the docs can get things sorted out with your pain and give you some relief...and some answers.

As always...Mike

PS: Book that next cruise...it looked like you really enjoyed the last one. We love'em yeah

Posted 10/25/2012 10:36 PM (GMT 0)
David

Did you get your PSA result?

Mel
Posted 10/25/2012 10:43 PM (GMT 0)
Thanks fpr the update David and it sounds like you are in good hands. I take Cymbalta for the nerve damage from PCa surgery and it does help with the pain, except on very bad days. Wishing you the best my friend.

Michael

Posted 10/25/2012 11:48 PM (GMT 0)
mikey - thanks, yeah still eying another cruise in mid Feb, 7 days next time instead of 5

michael - i wish a drug like cymbalta would work, but my damage is very severe and it takes all
of the fentanyl and codiene drugs to make a dent on the pain. even with the meds, there are plenty of times that i am dealing with a lot of pain.
--------------------------------------------------
UPDATE

was expecting a call today with my latest PSA score, but didn't happen, perhaps tommorow

did get an appt with the new gastro doc on nov 15th, that was only after my oncologist found out they wanted me to wait till late dec or early jan, my dr. told the other doc there was no way i could wait that long.

should get results of the celiac test by early next week, they said 5 days typical for results
Posted 10/26/2012 2:10 PM (GMT 0)
Purg,

Good luck with all that you have going on. I hope the antidepressant meds help. You could try going gluten free and see if that helps. Heck you aren't eating that much anyway. Is your weight still dropping?

My best to you. I hope you get some answers and relief.
Posted 10/26/2012 3:58 PM (GMT 0)
Purg -

I'd encourage you to read this

www.urotoday.com/Treatment-of-mCRPC/successful-treatment-of-advanced-metastatic-prostate-cancer-following-chemotherapy-based-on-molecular-profiling-beyond-the-abstract-by-charles-e-myers-md.html

Go to the BOTTOM of the abstract where it says "click here to read full text".

It's free. It's the full text corresponding to the abstract posted by RobertCool separately today. This I think puts the question of when to go on HT in a whole new light. This type of approach could really be relevant to your situation.

best,
Posted 10/26/2012 4:11 PM (GMT 0)
David has said many times he will not do HT because it would ruin his QOL.

ed

 

Posted 10/26/2012 4:59 PM (GMT 0)
Hope things go well for you. As for bladder spasms, any thought of "Vesicare"? It worked for me when a nearby cancerous tumor started invading my bladder--calmed it down.

As for the "lazy" oncologist--my dad was an Annapolis man, and especially as a first-year Plebe, he was besieged by upper classmen demanding "knowledge" beyond his present expertise. The answer "I don't know, SIR" was not acceptable. "I don't know, SIR, BUT I'LL FIND OUT" was the ONLY acceptable answer!! Such should be the oncolgogist's answer!!

Posted 10/26/2012 8:22 PM (GMT 0)
gleason - thanks, still losing, but rate has declined, think my body has lost all the easy weight after 2 months. will have the results of the celiac test early next week, if comes back positive, then it will be a strict gluten free diet for life, but least it will be an answer and a solution

pro - thanks, just popped in the house, will read the link/article in its entirity later, then comment back

seq - since my bladder has been cut off from my kidneys and totally non-functional the traditional meds like vesicare or ditropan have no way of helping down there any more. but good sugestion.

my oncologist is not the lazy doct, it was the gastro dr i was sent to. he was a waste of space to me, so have appt with a higher level gastro dr in 2 weeks or so. my oncologist is top notch and on top of all issues pertaining to me
Posted 10/27/2012 7:46 AM (GMT 0)
David, I am so sorry you have had such a difficult journey.  I hope the following weeks will bring you some much needed answers!

He then dictated a letter I needed to send to the VA county office, so that they can expidite my now 3 year old claim with the VA for Agent Orange related Prostate Cancer.

 

I have wondered about this and asked elsewhere.  Have you gotten your United States Congressman or Senator involved.  With a case like yours, I believe pressure from them could help you.  You are in our thoughts and prayers!

 

Hugs,

Aimzee

Posted 10/27/2012 2:08 PM (GMT 0)
yes, about a year ago, i got my U.S. Senator involved, and he's a big in the news name guy. He found my file in a pile of "hardship" cases, but said there were in the tens's of thousands even in that pile. As of July of this year, the VA in Washington was only working on files claimed in 2005, mine was filed in 2009, so after waiting 3 years, they are still 4 years woth of processing away from my 2009 filing. Absolutely nuts, they honestly hope some of us older vets will die, that way they will get out of approving the claim.

david
Posted 10/27/2012 4:26 PM (GMT 0)
David,
I worked in an AO that was completely defoliated with Agent Orange and even got sprayed more than a few times. I don't think for a second that that caused my PC. I simply can't fathom that landing in Danage or serving off shore could even remotely cause AO exposure leading to PC. You would get this type of exposure just by driving by any farm in the US during the 50's and 60's.
JT
Posted 10/27/2012 6:39 PM (GMT 0)

F8 said...
David has said many times he will not do HT because it would ruin his QOL.

ed

 LOL....according to his posts he has no QOL and is in constant pain...Not sure why HT couldnt be of help.  It definatley helped me with pain and reduced my tumor to more than half.   The QOL issues are completely manageable.

Posted 10/27/2012 7:05 PM (GMT 0)
F8, Casper,

See Rule 3.

Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view.

Posted 10/27/2012 7:41 PM (GMT 0)
Caspar

I sent you an email
Posted 10/27/2012 7:44 PM (GMT 0)
143

Is it really disrespectful to state the obvious?

Caspar makes a good point.

Perhaps HT should be back on the table in this situation.

Mel
Posted 10/27/2012 7:51 PM (GMT 0)
Mel,

Not always, but the snide remarks turn a valid comment into something else.

Posted 10/27/2012 8:16 PM (GMT 0)
johnt,

i fully agree with you.

but the point of the agent orange/pc provision with the va, simply means, if you were on the ground, even for a day in south viet nam, and have pc,, you qualify.

i dont think for a second i was ever directly exposed, other than our aircraft, because of their huge capacity, hauled a lot of the stuff from the PI to Viet Nam.
Posted 10/27/2012 8:23 PM (GMT 0)
I see that 3 out of the 4 i have on "ignore" are still going at it with me, and thus they will remain on "ignore".

Some here are hard of hearing, it doesn't matter if I personally don't want to do HT because of QOL issues or not. My oncologist, from the start, without knowing my opinion or preference told me that he didn't believe in early HT intervention, and that with all my existing side effects, extreme chronic pain and chronic fatigue, was not in favor of me going on HT. He said from the start, that when the time comes, he would rather shock the cancer with Taxotere or some other chemo agent.

I am not going to repeat this info again, and yes, 142, thanks for intervening. I don't need that trio or anyone else second guessing my doctor's decisons or my personal motives in treatment choices. I am good hands.

Sonny and I are in almost identical situations, and our doctor's have almost identical views, but I don't see this same trio knocking him for not jumping into HT. If my doctor ever had the reason to change his mind on HT with me, I would be listening with both ears wide open.

That's all I am going to say about it. Sometimes, people should mind their own business, my PC journey is unique to me and my particular circumstances.

David in SC
Posted 10/27/2012 9:24 PM (GMT 0)
{{{{{David}}}}}

{{{{{Sonny}}}}}

Hugs,

Aimzee

Posted 10/28/2012 1:41 AM (GMT 0)
thanks aimzee.

and i am thankful that my bro sonny doesnt have the lingering issues i do, based on his reports, he's feeling strong and healthy, and living his life his way on his terms. i wish i could say the say, but my deal is my deal, and his is his. i am happy for anyone doing well, wish it were that way for all the brothers here.

hope ron is having better days than your last report

david
Posted 10/28/2012 3:40 AM (GMT 0)
David,

Sounds like you had a good visit with the oncologist.

Why did he use the "M" word at this time? Are there some specific tests that have lead him to believe there is metastatic disease, instead of a large local area of PCa?

San Carlos
Posted 10/28/2012 4:03 AM (GMT 0)
San Carlos, my friend, good to hear from you.

Enjoyed our lunch the other day. And btw, there's not a lot left of that NH maple syrup, keeps seeming to disapear. Perhaps evaporation? lol.

The doctor knew what the VA county agent wanted, a serious letter, to attest to my condition. He's alluded to the the "M" word in the past, but as I sat there watching him dictate the letter, he spelled that out in a paragraph and repeated it. Hopefully, on the receiving end, it will get the VA person in Washington's attention to get this matter settled after 3 years of waiting.

He definitely, from the start, does not believe there is any curative hope for my PC situation. I have pretty well known that from the start. Aside from not believing in early HT intervention for most, especially for those with double-BCR events close together and dealing with rapid PSA velocity pre-dx, he's made it clear to me several times, that in these cases, slowing down the cancer, regardless of treatments, will be difficult at best.

He doesn't think there is a large local area, he's feels there might me many mutiple sites, as he put it, "every where and any where", which as the PSA continues to climb, will hopefully be large enough to spot at some point. THough, he has ruled out any future use of radiation, period, even for spot radiation. He feels my body has substained all the radiation damage that it should, from the combination of both major raidation events I have endured so far in 12 years.

Hope you are doing ok yourself. Perhaps we can hook up again in early November.

david
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