Proton Sites, Proton Therapy

Trew

There is a proton site in Indiana- here is the address;

http://www.mpri.org:80/


I will add more info on proton therapy as I have time.

-Trew

Trew

Other Proton therapy Sites
Link to Loma Linda Proton Therapy
This site is worth cnsidering:

http://www.protons.com/

Poke around, you'll find a link for requesting info, testimonials, other useful info. This is so much more fun than surgery.

And here is a link to former proton patients worth looking at for sure:

http://www.protonbob.com/proton-treatment-homepage.asp

And Mass General Hospital now has a proton Department- this is cuttng edge tech now being turned on PCa:

http://www.massgeneral.org/cancer/news/multimedia.aspx?id=46

The link above is past their home page. I typed in proton on their search feature and found this link. Proton therapy is new to Mass General. Most proton therapy units are modeled after Loma Linda's- LLU was the first in the US to install and use proton beams to fight cancer.

AVDuke03

Trew said:

Other Proton therapy Sites
Link to Loma Linda Proton Therapy
This site is worth cnsidering:

http://www.protons.com/

Poke around, you'll find a link for requesting info, testimonials, other useful info. This is so much more fun than surgery.

And here is a link to former proton patients worth looking at for sure:

http://www.protonbob.com/proton-treatment-homepage.asp

And Mass General Hospital now has a proton Department- this is cuttng edge tech now being turned on PCa:

http://www.massgeneral.org/cancer/news/multimedia.aspx?id=46

The link above is past their home page. I typed in proton on their search feature and found this link. Proton therapy is new to Mass General. Most proton therapy units are modeled after Loma Linda's- LLU was the first in the US to install and use proton beams to fight cancer.

Proton Therapy
Here is a link to the Proton Therapy Center at M.D. Anderson in Houston. It has been there for 2-3 years.
http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/specialty-and-treatment-centers/proton-therapy/index.html

Trew

New Proton Site in Flint, MI
Well, its not open yet, but it will be- its being built right now. The leading personality in getting this done was a patient at Loma Linda and had proton therapy there. He was so impressed he is bringing a new unit back to Michigan. Here is a news link:

http://www.mlive.com/news/flint/index.ssf/2009/10/mclaren_health_care_to_build_f.html

Proton is so much better than surgery on mid and low gleason score tumors.

Trew

MD Anderson Hospital Cancer CEnter
MD Anderson has a nice page on their proton center.

http://www.mdanderson.org/patient-and-cancer-information/care-centers-and-clinics/specialty-and-treatment-centers/proton-therapy/index.html

Proton treatment takes time, and is expensive. You need housing while you are away for treatment. So what? Look at what you are keeping with proton treatment! No surgery. You get to fire real "bullets" after treatment, no blanks, Ed is minimaul, so is incontinence.

Surgeons always prefer surgery over proton treatment, except for one guy I met at Loma Linda. Whenhe asked his surgeon what he would do if the Doc was in his position, the Doc told him he would go to LLU and get proton treatment. That was enough for that PC patient- he contacted LLU and got the proton treatment.

Treatment is usually 9 weeks- 2 1/2 months and look at what you save.

I see AVD has posted the same link above- I read his post earlier and then forgot about it. Eligard affects the momory. But this is worth posting twice. A big prestigeous cancer center like MD Anderson believes in proton Therapy, too.

Do the research guys.

lewvino

Trew said:

New Proton Site in Flint, MI
Well, its not open yet, but it will be- its being built right now. The leading personality in getting this done was a patient at Loma Linda and had proton therapy there. He was so impressed he is bringing a new unit back to Michigan. Here is a news link:

http://www.mlive.com/news/flint/index.ssf/2009/10/mclaren_health_care_to_build_f.html

Proton is so much better than surgery on mid and low gleason score tumors.

You hit the nail on the head
You hit the nail on the head with your Statement Mid and Low Gleason Scores.
So many think it works for all. My dad had proton back around 1997. They were treating about any Gleason back then as they were learning at Loma Linda. THey now limit it to Gleason 7 or below and then will also mix with Standard radiation.

Larry

Trew

lewvino said:

You hit the nail on the head
You hit the nail on the head with your Statement Mid and Low Gleason Scores.
So many think it works for all. My dad had proton back around 1997. They were treating about any Gleason back then as they were learning at Loma Linda. THey now limit it to Gleason 7 or below and then will also mix with Standard radiation.

Larry

Larry, that is exactly what
Larry, that is exactly what I observed. I had other PC patients who were also getting radiation after some proton treatment, but they still had their prostates in. But those with mid and low grade gleasons- all proton- all happy campers!

Trew

University of Florida Proton Therapy Institute
Here is a new proton treatment center in Florida called the University of Florida Proton Therapy Institute

http://www.floridaproton.org/

This is a growing trend in the treatment of prostate cancer. More of these centers will be showing up in the years ahead and more and more men will be opting for proton therapy than surgery.

On this site there is a link to proton therapy by a leader in proton therapy.

http://mediasite.video.ufl.edu/mediasite/Viewer/?peid=7a3ec6851c4145389688ea45878f62ca

This is worth listening to, especailly abut 20 min into the presentation where the Dr begins explaining how proton therapy works. Very good. The doctor does a nice job explaining the difference between regular radiaiton and proton treatment. Very important information.

As proton patients know, proton therapy can be set to stop at a certain depth, with little spill over to other tissue. The tumor is hit direct like a rifle bullet (my definition now- not his) and the tumor gets killed, surrounding tissue survives. Do not think radiaiton and proton treatment are the same. They are not.

Trew

New Proton Site coming to Orlando, FL
Orlando is also getting a new proton treatment center. The link is to an article annoucing the plans of MD Anderson to build a new proton center at their Orlando facility. The article says there are now 7 such centers in the US.

http://orlando.bizjournals.com/orlando/stories/2010/01/25/story2.html

A new one is now on track for Orlando, and as I mentioned above, one is being built in Flint, MI. That will bring the number to 9. This is good news for prostate cancer treatment.

Trew

Purpose of This posting
One of the reasons I started this thread is because there is a heavy tilt here towards the surgery side of treatment. Men need to know there are other options. Robert Marckini who wrote the book You Can Beat prostate Cancer and you don't Need Surgery to do It began treatment at Loma Linda U medical Center in 2000 for his PCa. He is still a strong advocate of Proton therapy- with no after effects. While I was there for radiation in Dec/Jan 09/10 he came into LLU to talk to one of the support groups. I did not atend his talk, but he is still very much a pro-proton advocate almost ten years after his treatment. What pushed him to proton was seeing his brother come out of the gold standard surgery with tubes attached and the pads and all and Bob determined if ever he got PC he was not going the surgery route. You can request Bob's book free from LLU- just go on their web site and click the link requesting information. LLU will send you the book and a DVD on the procedure.

Balance, brothers, its all about balance! Surgery is not the only option.

Swingshiftworker

Trew said:

University of Florida Proton Therapy Institute
Here is a new proton treatment center in Florida called the University of Florida Proton Therapy Institute

http://www.floridaproton.org/

This is a growing trend in the treatment of prostate cancer. More of these centers will be showing up in the years ahead and more and more men will be opting for proton therapy than surgery.

On this site there is a link to proton therapy by a leader in proton therapy.

http://mediasite.video.ufl.edu/mediasite/Viewer/?peid=7a3ec6851c4145389688ea45878f62ca

This is worth listening to, especailly abut 20 min into the presentation where the Dr begins explaining how proton therapy works. Very good. The doctor does a nice job explaining the difference between regular radiaiton and proton treatment. Very important information.

As proton patients know, proton therapy can be set to stop at a certain depth, with little spill over to other tissue. The tumor is hit direct like a rifle bullet (my definition now- not his) and the tumor gets killed, surrounding tissue survives. Do not think radiaiton and proton treatment are the same. They are not.

U of Florida and Marckini's Book
FYI, I contacted the U of Florida Proton Therapy Institute.

They sent me an info packet and a FREE copy of Marckini's book. The book is definitely biased towards proton beam therapy and is a puff-piece for Loma Linda U. where Marckini received his treatment. But, it's a good read and gives a lot of info about proton bean therapy in general and the treatment experience at Loma Linda in particular.

Thought it was odd that the U of Florida would send out a book promoting treatment at Loma Linda to a guy in CA, but I guess they've got enough profit margin in the procedure to send out copies of the book to potential clients where ever they can find them.

Swingshiftworker

Trew said:

Purpose of This posting
One of the reasons I started this thread is because there is a heavy tilt here towards the surgery side of treatment. Men need to know there are other options. Robert Marckini who wrote the book You Can Beat prostate Cancer and you don't Need Surgery to do It began treatment at Loma Linda U medical Center in 2000 for his PCa. He is still a strong advocate of Proton therapy- with no after effects. While I was there for radiation in Dec/Jan 09/10 he came into LLU to talk to one of the support groups. I did not atend his talk, but he is still very much a pro-proton advocate almost ten years after his treatment. What pushed him to proton was seeing his brother come out of the gold standard surgery with tubes attached and the pads and all and Bob determined if ever he got PC he was not going the surgery route. You can request Bob's book free from LLU- just go on their web site and click the link requesting information. LLU will send you the book and a DVD on the procedure.

Balance, brothers, its all about balance! Surgery is not the only option.

Proton After effects
I read Marckini's book (which I got free from U of Florida)and, as I recall, he didn't say that there are NO after effects from proton beam therapy.

He mentioned urination urgency and a slight burning feeling during and for a short time after treatment, as well as some bleeding from his rectum about 1 year after treatment and some blood in his stools for 18 months following treatment, which diminished gradually over that time period. On the positive side, he reported no ED (for him) and a consistent reduction in PSA level (with one upward blip which is not uncommon) down to below 1 in 22 months. See pages 129-131.

These after effects beat the heck out of what happens after surgery -- ED for up to 2 years and incontinence for up to 1 year are just the tip of the iceberg for surgical problems w/the alleged "gold standard" of DaVinci laproscopic prostate surgery.

Trew

Swingshiftworker said:

U of Florida and Marckini's Book
FYI, I contacted the U of Florida Proton Therapy Institute.

They sent me an info packet and a FREE copy of Marckini's book. The book is definitely biased towards proton beam therapy and is a puff-piece for Loma Linda U. where Marckini received his treatment. But, it's a good read and gives a lot of info about proton bean therapy in general and the treatment experience at Loma Linda in particular.

Thought it was odd that the U of Florida would send out a book promoting treatment at Loma Linda to a guy in CA, but I guess they've got enough profit margin in the procedure to send out copies of the book to potential clients where ever they can find them.

Loma Linda
Loma Linda was the pioneer in Proton therapy. Other proton centers learned about protons from LLU. the fact that other proton centers are being developed is evidence that the early stats is very good. If the stats were so/so other centers would not be spending their $millions to build new units.

Marckini's book is about his treatment at LLU but it would also apply to all proton centers. U of Florida canprobbly give the book out because they know that housing is an important part of treatment and they probably won't lose too many patients now to CA.

lewvino

Swingshiftworker said:

Proton After effects
I read Marckini's book (which I got free from U of Florida)and, as I recall, he didn't say that there are NO after effects from proton beam therapy.

He mentioned urination urgency and a slight burning feeling during and for a short time after treatment, as well as some bleeding from his rectum about 1 year after treatment and some blood in his stools for 18 months following treatment, which diminished gradually over that time period. On the positive side, he reported no ED (for him) and a consistent reduction in PSA level (with one upward blip which is not uncommon) down to below 1 in 22 months. See pages 129-131.

These after effects beat the heck out of what happens after surgery -- ED for up to 2 years and incontinence for up to 1 year are just the tip of the iceberg for surgical problems w/the alleged "gold standard" of DaVinci laproscopic prostate surgery.

Honestly as I have mentioned
Honestly as I have mentioned on other threads I really thought I was going with Proton. Then ended up with Davinci Surgery and happy with the results. Also There are problems with Proton and I know this first hand from my father and a man at the church I attend. My Dad had Proton back in 1997 (Loma Linda). Doing well but he still has very frequent need to urinate and has lost erection ability. Also at times will still get some mucus discharge.

The other man at Church had his Proton about 3 years ago (Loma Linda). He has since developed bladder cancer which he was told they are finding is 'common' after Proton treatments. Not sure on the correlation yet...Is it related to Proton or to the Prostate cancer but at any rate Loma Linda told him they are seeing more of this occuring.

I firmly believe that Proton does have a place for certain types of treatment but is not a 'cure all' for all men. Even Loma Linda told me I was a 'borderline' case for them.

My dad has tried to contact some of the guys from back in 97 in his treatment time frame and the majority have died. Remember though that back in 97 they were treating some very severe Prostate cancers with Proton as they were learning how effective it would be. My dad's cancer was found early and low Gleason.

I also watched a video on the web out of Florida Where a man had Davinci after Proton. It was interesting to see how much 'scaring of tissue' there was from the Proton beam. I believe this was a video from Dr. Patel (Is he in Florida?) They kept pointing out in the video the scar tissue and that it was an extremly difficult surgery due to the scarring.

Best wishes to all on deciding the treatment that they will follow regardless if it is watchful waiting, Surgery, Radiation, Proton, Seed implants, hormones. Gee what a plethora of choices we face with this cancer!



Larry age 55 Davinci in Aug. 2009

Trew

lewvino said:

Honestly as I have mentioned
Honestly as I have mentioned on other threads I really thought I was going with Proton. Then ended up with Davinci Surgery and happy with the results. Also There are problems with Proton and I know this first hand from my father and a man at the church I attend. My Dad had Proton back in 1997 (Loma Linda). Doing well but he still has very frequent need to urinate and has lost erection ability. Also at times will still get some mucus discharge.

The other man at Church had his Proton about 3 years ago (Loma Linda). He has since developed bladder cancer which he was told they are finding is 'common' after Proton treatments. Not sure on the correlation yet...Is it related to Proton or to the Prostate cancer but at any rate Loma Linda told him they are seeing more of this occuring.

I firmly believe that Proton does have a place for certain types of treatment but is not a 'cure all' for all men. Even Loma Linda told me I was a 'borderline' case for them.

My dad has tried to contact some of the guys from back in 97 in his treatment time frame and the majority have died. Remember though that back in 97 they were treating some very severe Prostate cancers with Proton as they were learning how effective it would be. My dad's cancer was found early and low Gleason.

I also watched a video on the web out of Florida Where a man had Davinci after Proton. It was interesting to see how much 'scaring of tissue' there was from the Proton beam. I believe this was a video from Dr. Patel (Is he in Florida?) They kept pointing out in the video the scar tissue and that it was an extremly difficult surgery due to the scarring.

Best wishes to all on deciding the treatment that they will follow regardless if it is watchful waiting, Surgery, Radiation, Proton, Seed implants, hormones. Gee what a plethora of choices we face with this cancer!



Larry age 55 Davinci in Aug. 2009

Cure All and ED
When I finally got diagnoised and all of my material in to LLU they told me to go ahead with surgery, too. My gleason was already a 4+4 and ended up a 5+4. Proton works best for men with mid to low gleasons.

RE the ED problem, it should be noted that older men naturally have ED problems even without being treated for PC. All those Cialis and Viagra commericals aren't just for PC patients. We sometimes forget this important fact. What works well at 60 may not be working so well at 75 naturally. And note, most of the ED and incontinency problems discussed on this borad are after surgery- NOT after proton treatment.

And Larry, as you point out, there are options.

lewvino

Trew said:

Cure All and ED
When I finally got diagnoised and all of my material in to LLU they told me to go ahead with surgery, too. My gleason was already a 4+4 and ended up a 5+4. Proton works best for men with mid to low gleasons.

RE the ED problem, it should be noted that older men naturally have ED problems even without being treated for PC. All those Cialis and Viagra commericals aren't just for PC patients. We sometimes forget this important fact. What works well at 60 may not be working so well at 75 naturally. And note, most of the ED and incontinency problems discussed on this borad are after surgery- NOT after proton treatment.

And Larry, as you point out, there are options.

Best wishes to you Trew.
Best wishes to you Trew. When did you have your surgery? Have you needed any follow up yet with the Gleason 9?

I used to joke with my wife (Pre prostate cancer) Well at least I don't have a need for those TV ads! Well now I'm glad the little pills work!

Larry

Trew

lewvino said:

Best wishes to you Trew.
Best wishes to you Trew. When did you have your surgery? Have you needed any follow up yet with the Gleason 9?

I used to joke with my wife (Pre prostate cancer) Well at least I don't have a need for those TV ads! Well now I'm glad the little pills work!

Larry

My History
Larry, I had De Vinci surgery in Lansing by Dr. Mashni on March 23, 2009. On march 30 I had the cath removed and got the path report. Dr Mashni informed me I had positive margins (bladder neck invasion) and would need radiaiton. That was the last time I saw Dr Mashni. 3 weeks later in April I got my first hormone shot. Basicly, on a life changer trreatment, I was given no overview what the shot was for, or the side effects. This was the office PA who basicly said,"You are going to get a shot today, lay down on the table and the nurese will come in and give it to you in your stomach." That was my intro to my 1st hormone shot. the emotional impact of the shot hit me hard and with no preparation for what was coming. I went off to Loma Lina in November and finished 15 proton and 24 radiation treatments on Jan 15. Came back from CA for my first appointment in early Feb- still no Dr- just the PA. I am scheduled to see Dr. Mashni on April 22 for the first time in 13 months and get my 3rd 6-month shot of Eligard. All that for a T4 stage cancer.

I am hoping the radiation finished off the cancer- hopeful thinking, but the eligard is powerful stuff and my PSA is still holding at .01. I am thinking seriously about changing doctors but I am uncertain if it is a wise thing to do at this stage of treatment or if another doctor would want me as a patient. Dr. mashni was highly recommended to me and that is why I had him do my surgery but it has not been what I expected.

I am still leaking, but that is because of the radiation and the steroid treatment I was on after radiation for bladder swelling. I was about 98% dry before radiaiton except when I was very active or backpacking.

With some PC patients it seems everything just falls into place perfectly. That has not been my case. Sometimes things just don't turn out like we hoped or planned.

lewvino

Trew said:

My History
Larry, I had De Vinci surgery in Lansing by Dr. Mashni on March 23, 2009. On march 30 I had the cath removed and got the path report. Dr Mashni informed me I had positive margins (bladder neck invasion) and would need radiaiton. That was the last time I saw Dr Mashni. 3 weeks later in April I got my first hormone shot. Basicly, on a life changer trreatment, I was given no overview what the shot was for, or the side effects. This was the office PA who basicly said,"You are going to get a shot today, lay down on the table and the nurese will come in and give it to you in your stomach." That was my intro to my 1st hormone shot. the emotional impact of the shot hit me hard and with no preparation for what was coming. I went off to Loma Lina in November and finished 15 proton and 24 radiation treatments on Jan 15. Came back from CA for my first appointment in early Feb- still no Dr- just the PA. I am scheduled to see Dr. Mashni on April 22 for the first time in 13 months and get my 3rd 6-month shot of Eligard. All that for a T4 stage cancer.

I am hoping the radiation finished off the cancer- hopeful thinking, but the eligard is powerful stuff and my PSA is still holding at .01. I am thinking seriously about changing doctors but I am uncertain if it is a wise thing to do at this stage of treatment or if another doctor would want me as a patient. Dr. mashni was highly recommended to me and that is why I had him do my surgery but it has not been what I expected.

I am still leaking, but that is because of the radiation and the steroid treatment I was on after radiation for bladder swelling. I was about 98% dry before radiaiton except when I was very active or backpacking.

With some PC patients it seems everything just falls into place perfectly. That has not been my case. Sometimes things just don't turn out like we hoped or planned.

What a rough road you have
What a rough road you have been down. There were two basic reasons I did not go with Proton.
1. Insurance denied even on appeal
2. Borderline decision on my treatment with Gleason 4+3 7. I Did have a positive margin in right appex but doing OK so far at 7 months post surgery.

My wifes brother actually works at Loma Linda in their computer area as a DataBase administrator for the tranpslants that are performed so I am very familiar with the hospital plus my dad being a patient out there in 97. (My wifes brother Started with the Heart Transplant team but he now keeps stats on all the transplants)

I had made arrangements to stay with my Wifes Brother if I had the Proton treatments. I was a little turned off by the financial aspect at Loma Linda when I found out that my insurance wouldn't pay. Loma Linda was 'we will finance treatment' but at 24 month payment plan auto deducted from your account - No if's and's or negotiations about the 24 month repay plan.

As you say sometimes things just don't turn out like we hoped or planned!

I remember now reading your post about the 'shot' with no warning.

Larry

Trew

lewvino said:

What a rough road you have
What a rough road you have been down. There were two basic reasons I did not go with Proton.
1. Insurance denied even on appeal
2. Borderline decision on my treatment with Gleason 4+3 7. I Did have a positive margin in right appex but doing OK so far at 7 months post surgery.

My wifes brother actually works at Loma Linda in their computer area as a DataBase administrator for the tranpslants that are performed so I am very familiar with the hospital plus my dad being a patient out there in 97. (My wifes brother Started with the Heart Transplant team but he now keeps stats on all the transplants)

I had made arrangements to stay with my Wifes Brother if I had the Proton treatments. I was a little turned off by the financial aspect at Loma Linda when I found out that my insurance wouldn't pay. Loma Linda was 'we will finance treatment' but at 24 month payment plan auto deducted from your account - No if's and's or negotiations about the 24 month repay plan.

As you say sometimes things just don't turn out like we hoped or planned!

I remember now reading your post about the 'shot' with no warning.

Larry

Wrong Road
From missed PSAs right on down the line, it has been one missed step after another. You could say I am getting a little spooked by now.

And what I know about The Shot I picked up from the internet- not one word from my doctor's office. Back to see the PA again in July 09 for my next 3 month blood draw and check up I mentioned to the PA I was getting hot flashes and my testicles were shrinking. The PA srugged off the hot flashes and told me the other was my imagination. That was the end of his credibility in my mind. I know smaller when I see and feel it. When I got to LLU I mentioned casually to my LLU Dr's nurse I was a little forgetful. "That's the Eligard," she told me. The internet verified that fact. So it has been.

When I see Dr Mashni in April I will tell him, no more PA, I would rather see no one.

My first doctor in Battle Creek didn't even look at the 3rd page of my biopsy report and completely missed the 4+4 gleason- how does a doctor do that? When I got home I called his office and asked about the missed score on the 3rd page- could I please get a return call/explaination. I was ignored. That is why I went up to Lansing and Dr Mshni. and so it goes.

erisian

Trew said:

Wrong Road
From missed PSAs right on down the line, it has been one missed step after another. You could say I am getting a little spooked by now.

And what I know about The Shot I picked up from the internet- not one word from my doctor's office. Back to see the PA again in July 09 for my next 3 month blood draw and check up I mentioned to the PA I was getting hot flashes and my testicles were shrinking. The PA srugged off the hot flashes and told me the other was my imagination. That was the end of his credibility in my mind. I know smaller when I see and feel it. When I got to LLU I mentioned casually to my LLU Dr's nurse I was a little forgetful. "That's the Eligard," she told me. The internet verified that fact. So it has been.

When I see Dr Mashni in April I will tell him, no more PA, I would rather see no one.

My first doctor in Battle Creek didn't even look at the 3rd page of my biopsy report and completely missed the 4+4 gleason- how does a doctor do that? When I got home I called his office and asked about the missed score on the 3rd page- could I please get a return call/explaination. I was ignored. That is why I went up to Lansing and Dr Mshni. and so it goes.

Side Effects?
Oh, did we forget to mention the side effects?
Interesting to hear that I wasn't the only one who was not told ANYTHING about the side effects from hormone therapy. The doctor said nothing, and I did not receive a drug information sheet or any written info at the time. Then later, when all these weird things start happening, I find (from the internet) that these are all known side effects. Hot flashes, crying fits, loss of muscle, loss of libido, impotence, shrinkage of testicles, shrinkage and deformation of the penis. But you won't find shrinkage listed in any of the "official" information. I guess if they told patients prior to starting treatment, a lot of them would refuse to do it. And it's not like these side effects only happen to a small percentage. If you're on this stuff for long enough, they WILL happen.

I've learned to ask a lot of questions and to ask for detailed, specific information on any new drug they want to try on me. If you don't pester them for info, they won't volunteer any. The Lupron isn't the only drug that I didn't get info for when I started treatment with it. High dose dexamethasone was used during radiation treatment for a bone met. They didn't bother to mention that it might make me psychotic, so when I started getting psychotic, we didn't immediately connect it to the dex. My wife thought I was losing my mind, which I was, of course, but we had no idea that it was drug-related. Due to the lack of information, it took much longer than it should have to get the problem taken care of, and it caused a substantial amount of suffering, not only for me, but for my wife and others as well.

Trew

erisian said:

Side Effects?
Oh, did we forget to mention the side effects?
Interesting to hear that I wasn't the only one who was not told ANYTHING about the side effects from hormone therapy. The doctor said nothing, and I did not receive a drug information sheet or any written info at the time. Then later, when all these weird things start happening, I find (from the internet) that these are all known side effects. Hot flashes, crying fits, loss of muscle, loss of libido, impotence, shrinkage of testicles, shrinkage and deformation of the penis. But you won't find shrinkage listed in any of the "official" information. I guess if they told patients prior to starting treatment, a lot of them would refuse to do it. And it's not like these side effects only happen to a small percentage. If you're on this stuff for long enough, they WILL happen.

I've learned to ask a lot of questions and to ask for detailed, specific information on any new drug they want to try on me. If you don't pester them for info, they won't volunteer any. The Lupron isn't the only drug that I didn't get info for when I started treatment with it. High dose dexamethasone was used during radiation treatment for a bone met. They didn't bother to mention that it might make me psychotic, so when I started getting psychotic, we didn't immediately connect it to the dex. My wife thought I was losing my mind, which I was, of course, but we had no idea that it was drug-related. Due to the lack of information, it took much longer than it should have to get the problem taken care of, and it caused a substantial amount of suffering, not only for me, but for my wife and others as well.

Erisian, we are brothers in
Erisian, we are brothers in this. When I get to my doc's office in April I plan to discuss all this with him. I am a real person- NOT somehting simply being processed. I have real emotions, real feelings, and thehormone treatment was really set them on edge. One could never imagine unless they experienced it.

A good friend had radiation at U of Michigan combined with hromone therapy. Before his first shot, he told me, this oncologist told him what he was going to be getting, why he was getting it and what to expect as side effects. So when the mood swings and crying hit, he was not taken by surprise. I told him about my experience and he was, "Trew, that is terrible! The shot is a life changing experience and to give the shot with more advanced warning of what to expect is just terrible! If with the warning, yu can't imagine what's coming until you get into it." Very true.