New Member

Posted May 26, 2007 · May 26, 2007

Here is further info from my Pathology Report:

" 14-core samples Tested. Microscopic analysis and

analysis: " Poorly differentiated adenocarcinoma (predicted Gleason's

Score 4+4 for a total of 8/10. ) 'Tumor involves greater than 90% of

the soft tissue submitted labled right lateral base and right side

and approximately 40% aof the tissue labled left lateral side and

left lateral base " Tissue from the remaining sites shows no evidence

of malignancy. "

Interpretation?

> Hi All,

>

> My name is Phil W. and I am finishing a course of

> proton radiation treatment at Loma California.

>

> My wife, the more literate one, and I will both be

> posting under this ID.

>

> Gory Details:

> First Clue: PSA Velocity of +.8,then 5 months later .9

> PSA 3.14/3.5 (highest)

> Gleason 3+4

> Stage T1c or T2a depending on whose figer was where

> First 18 core biopsy negative

> Second Biopsy - Color Doppler (by Dr. Bahn) 2 of 7

> cores positive

>

> Phil W.

>

> __________________________________________________________Looking

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>

Posted May 26, 2007 · May 26, 2007

Hi Sonny,

Where do you live? One of an early proton beam patients is Murray

Corwin who was the co founder of the Prostate Forum in Fullerton. I

think he had his treatment shortly after I had my RP in 1992.

You can contact him at MURRAYCORW@...

Aubrey

Well I wasn't really alone, there is Laurel and her husband Gregg,but it will be good to have a new perspective here! Sonny J

I wish you all the bestAubrey Pilgrim, DC (Ret.) Author ofA Revolutionary Approach to Prostate Cancer-Read the original book for FREE at: http://www.prostatepointers.org/prostate/lay/apilgrim/Read new edition for FREE at http://www.cancer.prostate-help.org/capilgr.htmDr. E. Crawford is co-author of the revision See what's free at AOL.com.

Posted May 26, 2007 · May 26, 2007

Phil:

Hang in there, the outages may be a temporary thing. Toward the end

of my stay, they were a bit more often. I however only missed one

treatment, and the synchrotron power supply was down that day, so no

one got treated. Correct, once assigned, you stay with that

assignment. My assignment was the HBL (Horizontal Beam Line) room,

and that is where I stayed. Your records are all in the computer that

controls that room's equipment, and it would not be practical to

change them around.

One recommendation: Submit a written request to the Team Leader of

the gantry you are in to have your treatment as EARLY as possible or

as early as you can stand it if you are a late riser. ( They get going

about 6:30 am I believe) In my experience the " break-downs or

malfunctions were more likely the day goes on.

It may take a while to get moved up in the sequence, but patients

complete their treatment every day, so sooner or later they

should be able to accommodate you. It took me almost a month to get

to my preferred 7am to 8 am time. I really think this will help.

Another thing, if you do get canceled, check back periodically by

calling the gantry control number that you have on your Guest Card.

Make sure that whoever is on duty knows that you want to come in if

there is a no-show, or they get " caught-up. " I would have missed

another treatment if I had not done that; they worked me in at 10 pm

on a Weds. night!

In my view, while frustrating, these problems are minor compared to

the recovery time, pain, and possible complications and side effects

of surgery or even some of the other options.

Keep us posted, and go to the Weds. meetings when you can; you don't

have to stay for the whole time.

Good luck

Sonny

>

Posted May 26, 2007 · May 26, 2007

Hey Man of Spring:

Thanks for that, I am pretty stubborn about this proton treatment

because I felt that same " Rebirth " at the time I first found it. I was

so frightened and confused with all the options and the potential side

effects, then, it was exactly like Bob Marckini says: when you find

proton beam therapy, " You will feel like the weight of the world has

lifted! "

Best, and keep in touch

Sonny

Posted May 26, 2007 · May 26, 2007

Hi Sonny,

I want to thank you for your suggestions, most of which I have already

implemented. I only have several more treatments to go, no matter how

long it takes ;-). There is a very thin line between calling the

treatment room and saying " I am 20 minutes away. When you get the

system back up, please call me " , and being a first class PIA. The

thin line gets thinner because the morning people and the afternoon

people can have entirely different personalities, especially the ones

that normally answer the phone.

I am aware that the mixing of analog computer systems and the digital

control system is akin to herding cats. It matches, in complexity,

telecommunications between real-time computers using different

operating systems, which is the field in which I made my living until

I retired. Having the treatment plans on the separate gantry computers

can be fixed by using a network and central server.

I was unaware of the incentive clause that you mention. The incentive

clause may or may not encourage Optivus to recruit and train the

replacements for the technicians that I have heard were lured away to

newer proton centers. If you finished your treatments in the beginning

of March and the tour you took was in January or February, it appears

to me that the incentives are not totally having their desired effect

in middle/late May. I say that because the gantry to which I am

assigned is having recurring failures, I am told. Also, sevveral weeks

ago my gantry was known to be down on Sunday evening and did not come

back up until Tuesday morning. That was the only missed treatment I

have had, so far. I was shuffled back into the schedule on three other

occasions. These I consider to be " near misses " .

I have been to several of the Wednesday evening sessions and find them

to be somewhat repetitious. I know that " I am not here by accident "

(my wife researched everything you never wanted to know about prostate

cancer and found Loma ) and don't need to be reminded of that on

a weekly basis. When they have a speaker whom I want to hear, I now

show up at 6:20 and avoid being irritated.

Don't get me wrong, I know that this is the right treatment for me,

but want to warn potential patients about what to realistically expect.

Phil W.

___________________________________________________________

>

> Phil:

>

> Hang in there, the outages may be a temporary thing. Toward the end

> of my stay, they were a bit more often. I however only missed one

> treatment, and the synchrotron power supply was down that day, so no

> one got treated. Correct, once assigned, you stay with that

> assignment. My assignment was the HBL (Horizontal Beam Line) room,

> and that is where I stayed. Your records are all in the computer that

> controls that room's equipment, and it would not be practical to

> change them around.

>

> One recommendation: Submit a written request to the Team Leader of

> the gantry you are in to have your treatment as EARLY as possible or

> as early as you can stand it if you are a late riser. ( They get going

> about 6:30 am I believe) In my experience the " break-downs or

> malfunctions were more likely the day goes on.

>

> It may take a while to get moved up in the sequence, but patients

> complete their treatment every day, so sooner or later they

> should be able to accommodate you. It took me almost a month to get

> to my preferred 7am to 8 am time. I really think this will help.

>

> Another thing, if you do get canceled, check back periodically by

> calling the gantry control number that you have on your Guest Card.

> Make sure that whoever is on duty knows that you want to come in if

> there is a no-show, or they get " caught-up. " I would have missed

> another treatment if I had not done that; they worked me in at 10 pm

> on a Weds. night!

>

> In my view, while frustrating, these problems are minor compared to

> the recovery time, pain, and possible complications and side effects

> of surgery or even some of the other options.

>

> Keep us posted, and go to the Weds. meetings when you can; you don't

> have to stay for the whole time.

>

> Good luck

>

> Sonny

>

> >

>

Posted September 8, 2009 · September 8, 2009

Hi Tracey,

A person with LBD will appear very normal when talking, and may do

" showtime, "

for other people. How did the first doctor come to the diagnosis of LBD.

You said Dementia and then LBD. Did the first doctor watch him for a spell

before making the LBD diagnosis? Did he have your dad take a mental status

test? Some doctors watch for a time, because it is difficult to make a

correct diagnosis without watching the patient sometimes. I would believe the

first Doctor, and let him change the diagnosis as he has more evidence.

Making a diagnosis without knowing the complete history or having a study

done, would seem rather ludicrous to me. But, then, you may have given the

new doctor the history. Did the new Doctor do a mental status test on your

Dad? How did he come to his diagnosis? Or was it one or two comments made

that sounded like psychosis to the doctor. LBD often appears to present as

psychosis, paranoia, or any one of a number of traits like that.

Hang in there girl, it will all straighten out in your mind in no time.

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 9/8/2009 10:07:59 A.M. Central Daylight Time,

whatifanew@... writes:

Hi Veree:

I recently joined this group too. I can tell you it is a welcome place to

come. When you aren't sure if you are loosing your mind, you can post

here and these people will reassure you in ways no one else can. I don't post

often, but find lots of comfort in reading other posts and knowing I'm not

alone. My dad was diagnosed with dementia, then lewy body dementia. In

taking him to another doctor to try and find something to get rid of his

hallucinations, this new doctor diagnosed him with phycosis and says he

doesn't believe dad has dementia. ly, I don't know what to believe

anymore,

but I can tell you he most fits in with the symptoms that are listed in

the database on this website. I hope it's not LBD and that we can find a med

that will help him back to normal. I will hope for the best and prepare

for the worst.

You've done the best you can and made the best changes as they became

available to you. You have no reason for guilt. Keep reading the posts and

post when you feel the need and trust me, the members here will help you

tons. Glad you found them too.

Tracey

Posted October 6, 2009 · October 6, 2009

Hi all,

I am a 57-yr. old woman whose father was diagnosed with LBD last year. At that

time, he was living in a retirement home, and seeing all sorts of " critters " in

his room...........bugs, frogs, butterflies, caterpillars, etc., etc. He was

put on an anti-pyschotic by his doctor (and after doing some research, I see

that this would NOT be indicated for dementia!) He also has myelodysplastic

syndrome, which is a blood disorder. In Dec. of last year, he was found on the

floor of his room with very low blood pressure, and very low body temp. The

first 48 hrs. were really touch and go, and we thought we would lose him. As a

result, he spent 9 wks. in hospital, and we were never really given any reason

as to what this was or why it happened. He was then placed into a nursing home

(and, incidentally, my mother is in a different nursing home with Alzheimer's).

That was in February. At the beginning, there were ups and downs, and he was

back in hospital about a month later, for another 3 wk. stint, and required 3

weekly blood transfusions after that. Anyway, he has improved considerably

since then, but now has started hallucinating and having delusions, in the last

couple months. This time, it is not critters, but he imagines that there is a

nurse at night who treats him very badly, and that there are people who come

into his room dressed weirdly and doing weird things, and that there are wild

parties going on all over the building (by the staff), etc., etc.

Last week, he came down with pneumonia (for the second time this year), and a

bad bladder infection (which he is very prone to..........long-standing history

of gout), and since then, the hallucinations/delusions have increased. He calls

me daily, sometimes twice, very depressed and telling me all of this crazy stuff

that he imagines to be happening. The doctor for the nursing home will be in

this morning, and I have told Dad to tell him what he tells me, so that the

doctor can see for himself what is going on. I have far more faith in this

doctor, who is very well known in the area, than I had for Dad's old doctor! I

understand that Aricept is one of the treatments for LBD, and I hope he puts him

on it. My mother is on it, and it helped her for a long time, and still is.

Oh, and BTW, Dad also has macular degeneration, and some deafness, so

visual/hearing is an issue.

Anyway, I am an only child, and live 30 miles away, so this is difficult for me.

Dad is 83, and has no other family close by, except a sister, and she has too

many medical problems of her own to even be able to visit Dad. I don't know how

to deal with this situation, and was hoping for advice from some who have been

through it.

Thanks in advance,

Lynda Marshall

Wellandport, ON Canada

Posted October 6, 2009 · October 6, 2009

Welcome Lynda, from another Canadian. When Mom developed PDD I had to be front

line for her in Kitchener, from Oakville. It was a very draining 13 years of

doing more and more for her, advocating, making decisions, supporting as best I

could, while working, raising 3 kids, 2 dogs. In hindsight I don't know how I

kept on but we do, know now how much it all took out of me. With 2 parents in

nh you have a lot going on.

Firstly, I know that married couples in Ont can get to the top of waiting lists

to be admitted to the same nh in Ont. Worth looking into. That would make your

task so much easier.

Secondly, passing out from sudden drops in BP can be part of the LBD. Many of

us think we are losing our loved ones and then they come back. I'm not sure

about actual body temp fluctuations, but do know many of our los feel very cold

much of the time.

Yes, the hallucinations, effects of LBD do tend to worsen with any kind of

infection. Hopefully your dad will improve once the antibiotics do their thing.

If he can tolerate Aricept it should help. Once you know if he can tolerate it

and how much it is helping, a low dose of Seroquel, better at night could help

him sleep and help the hallucinations. We always advise starting or stopping 1

med at a time to see the effect, to start low and go slow upping the amount

until you have a good baseline. Namenda is often given with Aricept as the 2

work differently within the brain and work well together. If Aricept isn't

tolerated, there are 2 more cognitive enhancers that can be tried and also work

well with Namenda. Getting the right blend of meds established can take a while

but is certainly worth the caution involved in the end.

Your dad has many medical issues to deal with. Any time you see a sudden change

in behaviour think uti, other kind of infection or pain first. We become the

ones who have to figure out what is going on.

Don't be surprised if your dad was not honest with the doctor this morning.

Showtime is often what the doctor sees, not the real issues. I used to have to

take off work when there was something the doctor needed to know about, so I

could be there and talk in person.

It is all intense so please take care of yourself as well as this journey with

your parents speeds up.

Gibsons BC

Mother died Aug. 12, 2006 at age 92 after a 13 year decline from PDD.

>

> Hi all,

>

> I am a 57-yr. old woman whose father was diagnosed with LBD last year. At

that time, he was living in a retirement home, and seeing all sorts of

" critters " in his room...........bugs, frogs, butterflies, caterpillars, etc.,

etc. He was put on an anti-pyschotic by his doctor (and after doing some

research, I see that this would NOT be indicated for dementia!) He also has

myelodysplastic syndrome, which is a blood disorder. In Dec. of last year, he

was found on the floor of his room with very low blood pressure, and very low

body temp. The first 48 hrs. were really touch and go, and we thought we would

lose him. As a result, he spent 9 wks. in hospital, and we were never really

given any reason as to what this was or why it happened. He was then placed

into a nursing home (and, incidentally, my mother is in a different nursing home

with Alzheimer's). That was in February. At the beginning, there were ups and

downs, and he was back in hospital about a month later, for another 3 wk. stint,

and required 3 weekly blood transfusions after that. Anyway, he has improved

considerably since then, but now has started hallucinating and having delusions,

in the last couple months. This time, it is not critters, but he imagines that

there is a nurse at night who treats him very badly, and that there are people

who come into his room dressed weirdly and doing weird things, and that there

are wild parties going on all over the building (by the staff), etc., etc.

> Last week, he came down with pneumonia (for the second time this year), and a