New Member

Report post · September 18, 2007

Hi, my name is Jane and welcome to our group. All of us have pulmonary fibrosis and we learn from each other by writing about our experiences and also by asking questions. It is pretty neat to learn what others are doing. I have certainly learned a lot from this board that has helped me to choose a new pulmonary doctor and supplements along with discussions about use of oxygen and what equipment everyone is using, etc. We look forward to hearing from you! Jane UIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> I am a 50 year old woman with COPD secondary to mold exposure > about four years ago. I was 46 yrs old and placed on oxygen at that > time and continue to be on O2 now. Many hospitalizations later, slips > and slides, etc. I have been a member of this group for a little under > 2 months. This is my first post. Could someone explain here in the > group or email me and tell me what goes on here and how I maneuver > around and get to know all of you? I would greatly appreciate it. I > have so little support and so few friends because of this. Thanks in > advance for any help you can give me. >

Report post · September 18, 2007

Hi, my name is Jane and welcome to our group. All of us have pulmonary fibrosis and we learn from each other by writing about our experiences and also by asking questions. It is pretty neat to learn what others are doing. I have certainly learned a lot from this board that has helped me to choose a new pulmonary doctor and supplements along with discussions about use of oxygen and what equipment everyone is using, etc. We look forward to hearing from you! Jane UIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> I am a 50 year old woman with COPD secondary to mold exposure > about four years ago. I was 46 yrs old and placed on oxygen at that > time and continue to be on O2 now. Many hospitalizations later, slips > and slides, etc. I have been a member of this group for a little under > 2 months. This is my first post. Could someone explain here in the > group or email me and tell me what goes on here and how I maneuver > around and get to know all of you? I would greatly appreciate it. I > have so little support and so few friends because of this. Thanks in > advance for any help you can give me. >

Report post · September 18, 2007

Hi, my name is Jane and welcome to our group. All of us have pulmonary fibrosis and we learn from each other by writing about our experiences and also by asking questions. It is pretty neat to learn what others are doing. I have certainly learned a lot from this board that has helped me to choose a new pulmonary doctor and supplements along with discussions about use of oxygen and what equipment everyone is using, etc. We look forward to hearing from you! Jane UIP 12/1998 Dalton, Georgia aka pianolady_musicgirl

>> Hi All,> I am a 50 year old woman with COPD secondary to mold exposure > about four years ago. I was 46 yrs old and placed on oxygen at that > time and continue to be on O2 now. Many hospitalizations later, slips > and slides, etc. I have been a member of this group for a little under > 2 months. This is my first post. Could someone explain here in the > group or email me and tell me what goes on here and how I maneuver > around and get to know all of you? I would greatly appreciate it. I > have so little support and so few friends because of this. Thanks in > advance for any help you can give me. >

Report post · September 18, 2007

Hey Ms I

I'm Richie, 45, in Memphis. I have a little piece of

infected right lung that got that way from 3 cancer

surgeries. The left one has the PF.

I have belonged to a few groups & this is the only one

I use regularly. So many of them are just endless

b*tching & griping. These people are wonderful!

They're upbeat & understanding. I'm a big believer in

positive thinking - it's kept me alive for the past 5

yrs - it works!

The only tip I have as far as navigating around is

that I get the digest sent to me. It's one e-mail a

day, sometimes two when it's a real active day. I

prefer it because my inbox doesn't get stuffed so

quickly. The down side is I usually reply to posts a

little late.

kinda Anyway, welcome to the group. I look forward to

hearing from you...

Richie in Memphis

dx w/cancer in right lung 2002, ARDS followed by PF in

the left one 2006.

May the words of my mouth and the meditations of my heart be ever pleasing to

Thee, O L-RD, my Rock, and my Redeemer. Psalms 19:14

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

http://searchmarketing.yahoo.com/

Report post · September 18, 2007

Hey Ms I

I'm Richie, 45, in Memphis. I have a little piece of

infected right lung that got that way from 3 cancer

surgeries. The left one has the PF.

I have belonged to a few groups & this is the only one

I use regularly. So many of them are just endless

b*tching & griping. These people are wonderful!

They're upbeat & understanding. I'm a big believer in

positive thinking - it's kept me alive for the past 5

yrs - it works!

The only tip I have as far as navigating around is

that I get the digest sent to me. It's one e-mail a

day, sometimes two when it's a real active day. I

prefer it because my inbox doesn't get stuffed so

quickly. The down side is I usually reply to posts a

little late.

kinda Anyway, welcome to the group. I look forward to

hearing from you...

Richie in Memphis

dx w/cancer in right lung 2002, ARDS followed by PF in

the left one 2006.

May the words of my mouth and the meditations of my heart be ever pleasing to

Thee, O L-RD, my Rock, and my Redeemer. Psalms 19:14

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

http://searchmarketing.yahoo.com/

Report post · September 18, 2007

Hey Ms I

I'm Richie, 45, in Memphis. I have a little piece of

infected right lung that got that way from 3 cancer

surgeries. The left one has the PF.

I have belonged to a few groups & this is the only one

I use regularly. So many of them are just endless

b*tching & griping. These people are wonderful!

They're upbeat & understanding. I'm a big believer in

positive thinking - it's kept me alive for the past 5

yrs - it works!

The only tip I have as far as navigating around is

that I get the digest sent to me. It's one e-mail a

day, sometimes two when it's a real active day. I

prefer it because my inbox doesn't get stuffed so

quickly. The down side is I usually reply to posts a

little late.

kinda Anyway, welcome to the group. I look forward to

hearing from you...

Richie in Memphis

dx w/cancer in right lung 2002, ARDS followed by PF in

the left one 2006.

May the words of my mouth and the meditations of my heart be ever pleasing to

Thee, O L-RD, my Rock, and my Redeemer. Psalms 19:14

________________________________________________________________________________\

____

Pinpoint customers who are looking for what you sell.

http://searchmarketing.yahoo.com/

Report post · September 23, 2007

Hi Richie, I am reading an awesome book on cancer and I thought of you. It's called "Cancer:50 Essential Things You Can Do" by Greg . It is the best book I've read so far. He is a cancer survivor who interviewed 1500 survivors of terminal cancer and looked for the common denominators. Although I don't have cancer I have found it to be extremely helpful for any "terminal" disease. If you are interested I can mail it to you when I am done. God bless you-Richie wrote: Hey Ms I I'm Richie, 45, in Memphis. I have a little piece of infected right lung that got that way from 3 cancer surgeries. The left one has the PF. I have belonged to a few groups & this is the only one I use regularly. So many of them are just endless b*tching & griping. These people are wonderful! They're upbeat & understanding. I'm a big believer in positive thinking - it's kept me alive for the past 5 yrs - it works! The only tip I have as far as navigating around is that I get the digest sent to me. It's one e-mail a day, sometimes two when it's a real active day. I prefer it because my inbox doesn't get stuffed so quickly. The down side is I usually reply to posts a little late. kinda Anyway, welcome to the group. I look forward to hearing from you... Richie in Memphis Richie in Memphis dx w/cancer in right lung 2002, ARDS

followed by PF in the left one 2006. May the words of my mouth and the meditations of my heart be ever pleasing to Thee, O L-RD, my Rock, and my Redeemer. Psalms 19:14 __________________________________________________________ Pinpoint customers who are looking for what you sell. http://searchmarketing.yahoo.com/ Sarcoid/PF 3/2006

Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.

Report post · October 25, 2008

riversmr wrote:

> Hi all like the rest of you have been diaganosed with prostae

> cancer mine is 4+3 in both lobes I am having laproscopic

> sugery with Dr Dahl at MGH in Boston on Dec 9th From the

> slides & x-rays it does not look like it has spread so they

> are taking it all out I just joined this group to see the info

> it provides from real life Thanks for having me Mr Mike

Welcome to the group Mike, and best of luck with your upcoming

surgery.

Alan

Report post · October 25, 2008

riversmr wrote:

> Hi all like the rest of you have been diaganosed with prostae

> cancer mine is 4+3 in both lobes I am having laproscopic

> sugery with Dr Dahl at MGH in Boston on Dec 9th From the

> slides & x-rays it does not look like it has spread so they

> are taking it all out I just joined this group to see the info

> it provides from real life Thanks for having me Mr Mike

Welcome to the group Mike, and best of luck with your upcoming

surgery.

Alan

Report post · October 25, 2008

riversmr wrote:

> Hi all like the rest of you have been diaganosed with prostae

> cancer mine is 4+3 in both lobes I am having laproscopic

> sugery with Dr Dahl at MGH in Boston on Dec 9th From the

> slides & x-rays it does not look like it has spread so they

> are taking it all out I just joined this group to see the info

> it provides from real life Thanks for having me Mr Mike

Welcome to the group Mike, and best of luck with your upcoming

surgery.

Alan

Report post · October 25, 2008

Mr. Mike, I had the DaVinci procedure done Aug 6 and am feeling great (still incontinent and suffering from ED but vastly improving since I am more able to do the Kegels). A word of advice, start exercising the pelvic floor muscles using the Kegel exercises - NOW! Your recovery will come much faster. I had a major setback due to a back injury and could do no exercises of any kind (even the Kegels caused extreme discomfort). I was at Gleason 6 (3+3) and PSA of 3.8 with Tic stage. I had atrphy in a couple of lobes as well as severe prostatitis. Several things working against me! Fortunately, only 1 core was positive. It was all confirmed with pathology, even though the tumor was considerably larger than thought.Have a great day!Steve S in ArkansasTo: ProstateCancerSupport Sent: Saturday, October 25, 2008 12:09:58 PMSubject: New member

Hi all like the rest of you have been diaganosed with prostae cancer

mine is 4+3 in both lobes I am having laproscopic sugery with Dr Dahl

at MGH in Boston on Dec 9th From the slides & x-rays it does not look

like it has spread so they are taking it all out I just joined this

group to see the info it provides from real life

Thanks for having me Mr Mike

Report post · October 25, 2008

Mr. Mike, I had the DaVinci procedure done Aug 6 and am feeling great (still incontinent and suffering from ED but vastly improving since I am more able to do the Kegels). A word of advice, start exercising the pelvic floor muscles using the Kegel exercises - NOW! Your recovery will come much faster. I had a major setback due to a back injury and could do no exercises of any kind (even the Kegels caused extreme discomfort). I was at Gleason 6 (3+3) and PSA of 3.8 with Tic stage. I had atrphy in a couple of lobes as well as severe prostatitis. Several things working against me! Fortunately, only 1 core was positive. It was all confirmed with pathology, even though the tumor was considerably larger than thought.Have a great day!Steve S in ArkansasTo: ProstateCancerSupport Sent: Saturday, October 25, 2008 12:09:58 PMSubject: New member

Hi all like the rest of you have been diaganosed with prostae cancer

mine is 4+3 in both lobes I am having laproscopic sugery with Dr Dahl

at MGH in Boston on Dec 9th From the slides & x-rays it does not look

like it has spread so they are taking it all out I just joined this

group to see the info it provides from real life

Thanks for having me Mr Mike

Report post · October 25, 2008

Mr. Mike, I had the DaVinci procedure done Aug 6 and am feeling great (still incontinent and suffering from ED but vastly improving since I am more able to do the Kegels). A word of advice, start exercising the pelvic floor muscles using the Kegel exercises - NOW! Your recovery will come much faster. I had a major setback due to a back injury and could do no exercises of any kind (even the Kegels caused extreme discomfort). I was at Gleason 6 (3+3) and PSA of 3.8 with Tic stage. I had atrphy in a couple of lobes as well as severe prostatitis. Several things working against me! Fortunately, only 1 core was positive. It was all confirmed with pathology, even though the tumor was considerably larger than thought.Have a great day!Steve S in ArkansasTo: ProstateCancerSupport Sent: Saturday, October 25, 2008 12:09:58 PMSubject: New member

Hi all like the rest of you have been diaganosed with prostae cancer

mine is 4+3 in both lobes I am having laproscopic sugery with Dr Dahl

at MGH in Boston on Dec 9th From the slides & x-rays it does not look

like it has spread so they are taking it all out I just joined this

group to see the info it provides from real life

Thanks for having me Mr Mike

Report post · October 26, 2008

Dr. Dahl performed my surgery in 2001. I was one of his first surgeries at MGH. Good Luck

Hi all like the rest of you have been diaganosed with prostae cancer mine is 4+3 in both lobes I am having laproscopic sugery with Dr Dahl at MGH in Boston on Dec 9th From the slides & x-rays it does not look

like it has spread so they are taking it all out I just joined this group to see the info it provides from real life Thanks for having me Mr Mike -- T NowakTo learn about the Petition to Make Prostate Cancer a National Priority

go to http://www.prostatecancerpetition.org

Report post · October 26, 2008

Dr. Dahl performed my surgery in 2001. I was one of his first surgeries at MGH. Good Luck

Hi all like the rest of you have been diaganosed with prostae cancer mine is 4+3 in both lobes I am having laproscopic sugery with Dr Dahl at MGH in Boston on Dec 9th From the slides & x-rays it does not look

like it has spread so they are taking it all out I just joined this group to see the info it provides from real life Thanks for having me Mr Mike -- T NowakTo learn about the Petition to Make Prostate Cancer a National Priority

go to http://www.prostatecancerpetition.org

Report post · October 26, 2008

Dr. Dahl performed my surgery in 2001. I was one of his first surgeries at MGH. Good Luck

Hi all like the rest of you have been diaganosed with prostae cancer mine is 4+3 in both lobes I am having laproscopic sugery with Dr Dahl at MGH in Boston on Dec 9th From the slides & x-rays it does not look

like it has spread so they are taking it all out I just joined this group to see the info it provides from real life Thanks for having me Mr Mike -- T NowakTo learn about the Petition to Make Prostate Cancer a National Priority

go to http://www.prostatecancerpetition.org

Report post · February 18, 2009

-- you've come to the right place. You'll hear a lot of sound advice and information here from people who are very well informed -- much better than I am, that's for sure. You'll also hear that while we all have or have had prostate cancer (PCa), we're also all different and you should take anecdotal stories with a grain of salt. That said, I can tell you that my initial diagnosis was similar to what you've told us about yours thus far. I had the Da Vinci surgery one year ago, never had any incontinence and erectile function is now about 70 - 90% with no medication. PSA is so far undetectable. When you get all your numbers, however, there will be a other treatments to consider and something besides Da Vinci might end up as your preference. I don't regret my choice, but knowing what I do now from reading this forum, I'm aware of other equally viable and attractive options. I was diagnosed at 59, and waited eight months before surgery -- with no change in my cancer, gleason, etc., as a reslut of waiting. Again, we're all different, but if your numbers show that the cancer has been caught early and is not of an aggresive kind, time is on your side. So take it, take your time and get to know about PCa and its treatments so you can make the choice that is right for you. Sorry about your diagnosis, but know that while its a hassle and annoyance and serious matter, there's plenty of good and quality life after PCa. NowlinAltadena, CA> To: ProstateCancerSupport > Date: Thu, 19 Feb 2009 00:09:35 +0000> Subject: New Member> > Hi,> > For my details, I am 58 years old, my first high PSA test was 4.25 and the followup I > requested was 4.13. My brother and cousin both were diagnosed at about my same age so I > decided on a biopsy. My Dr phoned me this am with my results. Of the 12 sample, 3 on each > side showed involved tissue and my Gleason score is 6. I do not yet know the 2 numbers of > which it is comprised but will call tomorrow and find out. I have been researching on the web > since my first over 4 results and so far am leaning toward the Da Vinci robotic surgery, but > am open to all options.> > Thanks for being here,> See how Windows connects the people, information, and fun that are part of your life. See Now

Report post · February 18, 2009

-- you've come to the right place. You'll hear a lot of sound advice and information here from people who are very well informed -- much better than I am, that's for sure. You'll also hear that while we all have or have had prostate cancer (PCa), we're also all different and you should take anecdotal stories with a grain of salt. That said, I can tell you that my initial diagnosis was similar to what you've told us about yours thus far. I had the Da Vinci surgery one year ago, never had any incontinence and erectile function is now about 70 - 90% with no medication. PSA is so far undetectable. When you get all your numbers, however, there will be a other treatments to consider and something besides Da Vinci might end up as your preference. I don't regret my choice, but knowing what I do now from reading this forum, I'm aware of other equally viable and attractive options. I was diagnosed at 59, and waited eight months before surgery -- with no change in my cancer, gleason, etc., as a reslut of waiting. Again, we're all different, but if your numbers show that the cancer has been caught early and is not of an aggresive kind, time is on your side. So take it, take your time and get to know about PCa and its treatments so you can make the choice that is right for you. Sorry about your diagnosis, but know that while its a hassle and annoyance and serious matter, there's plenty of good and quality life after PCa. NowlinAltadena, CA> To: ProstateCancerSupport > Date: Thu, 19 Feb 2009 00:09:35 +0000> Subject: New Member> > Hi,> > For my details, I am 58 years old, my first high PSA test was 4.25 and the followup I > requested was 4.13. My brother and cousin both were diagnosed at about my same age so I > decided on a biopsy. My Dr phoned me this am with my results. Of the 12 sample, 3 on each > side showed involved tissue and my Gleason score is 6. I do not yet know the 2 numbers of > which it is comprised but will call tomorrow and find out. I have been researching on the web > since my first over 4 results and so far am leaning toward the Da Vinci robotic surgery, but > am open to all options.> > Thanks for being here,> See how Windows connects the people, information, and fun that are part of your life. See Now

Report post · February 19, 2009

Hi , sorry you are going through this. I would be very surprised

if your Gleason 6 score is anything other than a 3+3.

My husband, Gregg was 57 at the time of his diagnosis. Gleason 3+3,

PSA 4.9 stage T1c. After a couple of weeks of research he took

surgery off the table as a treatment option. We reached the

conclusion that the success rates for all of the currently available

treatment options are virtually equal. We also concluded that the

rate and severity of side effects from surgery are much greater than

with state of the art radiation treatments.

Gregg opted for proton beam radition therapy (PBRT) at Loma

University Medical Center in Loma , CA. We were so convinced

that this was the best treatment option that we paid out of pocket

as our HMO would not pay and does not have the equipment. IMRT would

have been his second choice.

Today, two years after he completed his treatment his PSA is .85.

He's had two side effects. He has reduced volume of ejaculate.

Sometimes there is qute a bit, sometimes there is next to none. He

had some infrequent, minor rectal bleeding about a year after

treatment ended. This lasted about 9 months and has cleared up

without any intervention. His erectile function is unaffected and he

has no urinary issues at all. In fact, he is having to get up less

often in the middle of the night to pee than he did before.

Sometimes he doesn't need to get up at all.

I believe, based on two + years of belonging to several on line

prostate cancer support groups, that urologists are not painting a

realisitic picture of life after a radical prostatectomy.

Recently there was a survey of men who had undergone RP's. It turns

out that men who had robotic surgeries were more disappointed in

their outcomes based on expectations that robotic surgeries would

result in fewer, less severe side effects. This has not proven to be

the case, after all. It is less invasive with a quicker recovery

time, but the cause and effect of side effects is not different.

It would be worth your while to explore all of your options and

consult with doctors who are experts in those options.

Laurel

>

> Hi,

>

> For my details, I am 58 years old, my first high PSA test was 4.25

and the followup I

> requested was 4.13. My brother and cousin both were diagnosed at

about my same age so I

> decided on a biopsy. My Dr phoned me this am with my results. Of

the 12 sample, 3 on each

> side showed involved tissue and my Gleason score is 6. I do not

yet know the 2 numbers of

> which it is comprised but will call tomorrow and find out. I have

been researching on the web

> since my first over 4 results and so far am leaning toward the Da

Vinci robotic surgery, but

> am open to all options.

>

> Thanks for being here,

>

Report post · February 19, 2009

> ... He has reduced volume of ejaculate. Sometimes there is

> qute a bit, sometimes there is next to none. ...

That's interesting. I had the same experience after radiation

(x-rays, not protons). Over time, the volume of ejaculate got

less and less so that now there is never more than a little.

I wonder if this is due to the fact that radiation does not work

all at once. The damaged tumor cells are not killed immediately

by the radiation. They die out over a period of years after

treatment.

I knew that surgery patients have no ejaculate. When I first

noticed that sometimes I had a lot of ejaculate I thought that

maybe the treatment failed. However my PSA has continue to fall

over time (at five years it was < .1) so, at least in my case,

I'm pretty sure that this phenomenon was not an indicator of

treatment failure.

Alan

Report post · February 19, 2009

> ... He has reduced volume of ejaculate. Sometimes there is

> qute a bit, sometimes there is next to none. ...

That's interesting. I had the same experience after radiation

(x-rays, not protons). Over time, the volume of ejaculate got

less and less so that now there is never more than a little.

I wonder if this is due to the fact that radiation does not work

all at once. The damaged tumor cells are not killed immediately

by the radiation. They die out over a period of years after

treatment.

I knew that surgery patients have no ejaculate. When I first

noticed that sometimes I had a lot of ejaculate I thought that

maybe the treatment failed. However my PSA has continue to fall

over time (at five years it was < .1) so, at least in my case,

I'm pretty sure that this phenomenon was not an indicator of

treatment failure.

Alan

Report post · February 19, 2009

I found out today that my Gleason scores are 3+3. After much reading I am

seriously

considering getting a second opinion on my biopsy from Dr. Epstein at s

Hopkins. My

insurance will not pay, but the $225 seems quite reasonable. I am already

planning to get

a second opinion on possible treatments at the University of Wisconsin Hospital.

Madison

near enough to me and are consistently rated as one of the best hospitals in the

country.

And added benefit is that a friend's son works there and will find out who is

the most

trusted and successful urologist there for me. I could also go to Mayo but have

no " inside

contacts there.

For me all options are still under consideration. I have a resurfaced hip and am

contacting

my hip surgeon to see if he would consider any methods more appropriate for me

from

that perspective.

Thanks again,

>

> Hi,

>

> For my details, I am 58 years old, my first high PSA test was 4.25 and the

followup I

> requested was 4.13. My brother and cousin both were diagnosed at about my same

age

so I

> decided on a biopsy. My Dr phoned me this am with my results. Of the 12

sample, 3 on

each

> side showed involved tissue and my Gleason score is 6. I do not yet know the 2

numbers

of

> which it is comprised but will call tomorrow and find out. I have been

researching on the

web

> since my first over 4 results and so far am leaning toward the Da Vinci

robotic surgery,

but

> am open to all options.

>

> Thanks for being here,

>

Report post · February 19, 2009

> ... I am already planning to get a second opinion on possible

> treatments at the University of Wisconsin Hospital. Madison

> ...

,

Since the two main, well accepted therapies are surgery and

radiation, I recommend that you get at least one consultation

with a surgeon and one with a radiation oncologist.

The treatments are, of course, radically different and the two

kinds of specialists don't always understand each other very

well. The surgeon my HMO sent me to told me that radiation was

no good for me, but the radiation oncologists disagreed and, in

fact, my radiation treatment seemed to have worked very well.

I think you may get a better understanding of the options if you

let each kind of specialist talk to you about his own specialty

and how he would treat you rather than having opinions from two

surgeons or two radiation oncologists.

My HMO (Kaiser) agreed with my request for that and paid for

both consultations.

Alan

Report post · February 19, 2009