Radiation with Hormone Therapy-Firmagon

RADIATION HOPEFUL

Kongo said:

Bounce?
Rad Hopeful,

I wonder what your doctor said about the slight increase in the PSA. Bounce is not uncommon for men who have radiation as their only source of treatment but it is much less common in men who are post RP and who have had radiation salvage, particularly when on HT.

It does take a while for the cancer cells to die after treatment--they just don't die when they get zapped--as they need to wait until mitosis tries to occur and then the damaged DNA in the cancer cells can't divide properly and they die. Some scientiests theorize that these dying cells throw off some PSA which causes the bounce but I don't think anyone really knows for sure exactly what causes this. If PSA bounce was caused by cells that were self destructing I think the obvious question is, why doesn't everyone who has radiation get a bounce? Also, the median time for a PSA bounce is about 18 months. You're a bit early for that.

I think a more likely explanation is the botched injection you described which apparently resulted in less of the drug than you should have received. I would be complaining loud and long to the doctor. Interns need to learn, obviously, but they should be very closely supervised.

Best of luck to you,

K

Small Bounce
Thank you KONGO for the reply, both you & V GAMA are great in helping others understand what is happening with this terrible disease.
When I go into the urologist on Monday, I will in a prudent manner let them know how I feel about the last visit.
I tend to agree the botched injection led to the results, although I hope the cancer cells are dying. I'm doing good & physically doing work, the only complaint I have is becoming tired around noon each day & I believe this is from the hormone drug. Other than that, I have no complaints.

I'll post what the doctor tells me about the increase. I never get to see the doctor himself , I always get the Physician Assistant.

Again I THANK YOU fo the reply--bless you in your travels

Cordially
Rad Hopeful

Kongo

RADIATION HOPEFUL said:

Small Bounce
Thank you KONGO for the reply, both you & V GAMA are great in helping others understand what is happening with this terrible disease.
When I go into the urologist on Monday, I will in a prudent manner let them know how I feel about the last visit.
I tend to agree the botched injection led to the results, although I hope the cancer cells are dying. I'm doing good & physically doing work, the only complaint I have is becoming tired around noon each day & I believe this is from the hormone drug. Other than that, I have no complaints.

I'll post what the doctor tells me about the increase. I never get to see the doctor himself , I always get the Physician Assistant.

Again I THANK YOU fo the reply--bless you in your travels

Cordially
Rad Hopeful

Choices
Rad Hopeful,

I know nothing of your doctor arrangements, how your insurance coverage works, or anything else like that but it seems to me that you are paying for a doctor...not a PA. While a PA may be useful in drawing blood and routine things I hope that your get to have an opportunity to express concerns and questions directly to the physician. If that's not the case, I for one, would start shopping for a new medical team.

Good luck.

K

muckdown

positive feelings
I read your entry and it gives alot of confidence going into adiation treatment

RADIATION HOPEFUL

Kongo said:

Choices
Rad Hopeful,

I know nothing of your doctor arrangements, how your insurance coverage works, or anything else like that but it seems to me that you are paying for a doctor...not a PA. While a PA may be useful in drawing blood and routine things I hope that your get to have an opportunity to express concerns and questions directly to the physician. If that's not the case, I for one, would start shopping for a new medical team.

Good luck.

K

UROLOGIST APPOINTMENT
ALL following this blog

Had my monthly shot of Firmagon today & the PA informed me .05 is the margin of error in the labs that I shouldn't get upset until we get the next month report--that not all patients having radiation reach zero PSA.
I had a experienced nurse give me the shot today & I'm also getting a testerone test along with the PSA at the end of this month. I feel better knowing about the margin of error & having the shot being given by someone that knows what they are doing.
I can tell the difference already regarding the proper shot procedure.

Rad HOPEFUL

RADIATION HOPEFUL

muckdown said:

positive feelings
I read your entry and it gives alot of confidence going into adiation treatment

Muckdown
I'm relaying my personal experiences regarding the choice I took & so far I"M pleased with the results. I'm doing a lot of landscaping work & feeling pretty good.
I would never tell anyone this is the only treatment method, you have many choices & all are open to invstigation & decision making--wishing you the best in your decision.

Rad Hopeful

RADIATION HOPEFUL

muckdown said:

positive feelings
I read your entry and it gives alot of confidence going into adiation treatment

Muckdown
I'm relaying my personal experiences regarding the choice I took & so far I"M pleased with the results. I'm doing a lot of landscaping work & feeling pretty good.
I would never tell anyone this is the only treatment method, you have many choices & all are open to invstigation & decision making--wishing you the best in your decision.

Rad Hopeful

VascodaGama

RADIATION HOPEFUL said:

Muckdown
I'm relaying my personal experiences regarding the choice I took & so far I"M pleased with the results. I'm doing a lot of landscaping work & feeling pretty good.
I would never tell anyone this is the only treatment method, you have many choices & all are open to invstigation & decision making--wishing you the best in your decision.

Rad Hopeful

Time to decide on a private Cancer Care Program
RadHope

Another event, another chapter in your case history. I am glad to know that you are satisfied with the doctor’s opinion and happy again in your continuous journey.
Everybody is subjected to periods of “bad-timing” once caught with prostate cancer. We survivors want to “close” down the chapter on cancer and forget about it, but unfortunately the matter will be part of our life routine forever. We need to be on the vigilance but should not allow such to interfere with our Quality of Life.
Your treatment soon will become a past chapter in your case.

The T test is important for your future reference while on Firmagon. It is not common for doctors suggesting this test because they do not care for patients in a “private” modality. I have learn since diagnosis in 2000, that it is my “duty” to educate myself on the matters of health and keep a record of all medications, treatment and tests taken (I have two samples/slices of my prostate in my file).
We are the vigilantes and the “supervisors” of our own “machine”. We have the responsibility of checking if any “part” is working properly.

Other tests I recommend you to include in your next annual health check-up are a bone density scan to verify for osteopenia/osteoporosis (bone loss) and a cardiac test (ECG and echocardiogram). Both tests are follow-ups of your treatment. Firmagon causes bone loss which may require you to start taking a bisphosphonate (like fosamax), and all medication taken for RT or its side effects (including the daily physical exercises) may cause variations in your heart health.
In my cancer care program, I have these two tests added with a MRI (CT) and a Bone Scintigraphy done every two years. PSA and T are done every three months (because I am on HT), and PAP and Lipids annually.

Diet is an important player and so it is the need of any supplement.
Wishing you the best.

Sincerely
VGama

RADIATION HOPEFUL

VascodaGama said:

Time to decide on a private Cancer Care Program
RadHope

Another event, another chapter in your case history. I am glad to know that you are satisfied with the doctor’s opinion and happy again in your continuous journey.
Everybody is subjected to periods of “bad-timing” once caught with prostate cancer. We survivors want to “close” down the chapter on cancer and forget about it, but unfortunately the matter will be part of our life routine forever. We need to be on the vigilance but should not allow such to interfere with our Quality of Life.
Your treatment soon will become a past chapter in your case.

The T test is important for your future reference while on Firmagon. It is not common for doctors suggesting this test because they do not care for patients in a “private” modality. I have learn since diagnosis in 2000, that it is my “duty” to educate myself on the matters of health and keep a record of all medications, treatment and tests taken (I have two samples/slices of my prostate in my file).
We are the vigilantes and the “supervisors” of our own “machine”. We have the responsibility of checking if any “part” is working properly.

Other tests I recommend you to include in your next annual health check-up are a bone density scan to verify for osteopenia/osteoporosis (bone loss) and a cardiac test (ECG and echocardiogram). Both tests are follow-ups of your treatment. Firmagon causes bone loss which may require you to start taking a bisphosphonate (like fosamax), and all medication taken for RT or its side effects (including the daily physical exercises) may cause variations in your heart health.
In my cancer care program, I have these two tests added with a MRI (CT) and a Bone Scintigraphy done every two years. PSA and T are done every three months (because I am on HT), and PAP and Lipids annually.

Diet is an important player and so it is the need of any supplement.
Wishing you the best.

Sincerely
VGama

Care
VGama
I asked to have the testerone tested ,the doc never suggested it. I;m also having a echo-cardiogram this Friday. I hve to question fosamax at my next visit. Wonder if taking calcium & magnesium pills help with bone loss.
Your suggstions are all valid & I must be more vigilant in what the urologist is prescribing. At least I got the shot given properly & told the doc I don't ever want the tech who gave the improper shot. Again I only see the PA not the doctor himself.

Thanks for the reply --appreciate it

Rad Hopeful

RADIATION HOPEFUL

RADIATION HOPEFUL said:

Care
VGama
I asked to have the testerone tested ,the doc never suggested it. I;m also having a echo-cardiogram this Friday. I hve to question fosamax at my next visit. Wonder if taking calcium & magnesium pills help with bone loss.
Your suggstions are all valid & I must be more vigilant in what the urologist is prescribing. At least I got the shot given properly & told the doc I don't ever want the tech who gave the improper shot. Again I only see the PA not the doctor himself.

Thanks for the reply --appreciate it

Rad Hopeful

AUGUST2,2011 UPDATE
Had a echo done & all is "OK"
Got blood test back yesterday--PSA is now at 0.80-----it's still below 1 but not as low as it once went to 0.78.
I realize this is within the lab tolerance zone so I guess I shouldn't get upset.
I was hoping for a lower reading but it appears to be hovering around 0.80
I also got the testerone test & it is less than 20. I don't know if this is good or bad?
Any insight on results would be appreciated.
BLESS ALL

Cordially
Rad Hopeful

VascodaGama

RADIATION HOPEFUL said:

AUGUST2,2011 UPDATE
Had a echo done & all is "OK"
Got blood test back yesterday--PSA is now at 0.80-----it's still below 1 but not as low as it once went to 0.78.
I realize this is within the lab tolerance zone so I guess I shouldn't get upset.
I was hoping for a lower reading but it appears to be hovering around 0.80
I also got the testerone test & it is less than 20. I don't know if this is good or bad?
Any insight on results would be appreciated.
BLESS ALL

Cordially
Rad Hopeful

Successful Numbers


RadHope

Let’s use logic here. Your IMRT ended at Mar30 which makes it just 4 months since your “system” start cleaning up and return to normalcy. This last PSA (under the influence of HT) of 0.8 (Jul30) comes from a high PSA of 4.12 before starting RT and that should give you confidence on the progress of the treatment. It is too early to draw any final conclusion and too early to see a NADIR.
Firmagon effect on the PSA is confirmed by the low level of Testosterone at 20ng/dl.(normal T is over 260). This may be an added fact behind the decrease of the PSA level but the radiation effect on the cancer, which is demonstrated on the decrease of the PSA, is there too, and that comes from a much higher level of 53.99ng/ml at diagnosis.
We see reports on PSA levels decreasing at a much slower pace in cases of IMRT alone. Some of them are reported to take two years before getting to nadir.

You do not need to continue taking monthly PSA tests any more. You can and they are “wonderful” numbers to watch but they serve no purposes in the assessment of your treatment progress from now on. At this 3-month mile-stone post-RT the lower PSA is the first confirmation of success. Let’s hope it continues its “good” path.

I sense anxiety in your sentences;
“…. so I guess I shouldn't get upset. I was hoping for a lower reading but…”

That may be a side effect typical of HT (Firmagon). They come and stay unnoticed until we realize that have fallen into the “trap”.

This monthly post of yours may as well be giving you stress. Surely you are looking for a ZERO and that will come when the time is right. Relax.
My opinion as a comrade on this “boat” of survivors is for you to stop taking those monthly PSA tests and change to PSAs on 3 to 6 month cycles. They are sufficient to inform on any advance in your case.

I sincerely recommend you to go out and enjoy time with your family and friends. Do some travelling and commemorate your 3-month mile-stone success.

I raise a glass of my dearest red wine to celebrate with you.

Regards
VGama

RADIATION HOPEFUL

VascodaGama said:

Successful Numbers


RadHope

Let’s use logic here. Your IMRT ended at Mar30 which makes it just 4 months since your “system” start cleaning up and return to normalcy. This last PSA (under the influence of HT) of 0.8 (Jul30) comes from a high PSA of 4.12 before starting RT and that should give you confidence on the progress of the treatment. It is too early to draw any final conclusion and too early to see a NADIR.
Firmagon effect on the PSA is confirmed by the low level of Testosterone at 20ng/dl.(normal T is over 260). This may be an added fact behind the decrease of the PSA level but the radiation effect on the cancer, which is demonstrated on the decrease of the PSA, is there too, and that comes from a much higher level of 53.99ng/ml at diagnosis.
We see reports on PSA levels decreasing at a much slower pace in cases of IMRT alone. Some of them are reported to take two years before getting to nadir.

You do not need to continue taking monthly PSA tests any more. You can and they are “wonderful” numbers to watch but they serve no purposes in the assessment of your treatment progress from now on. At this 3-month mile-stone post-RT the lower PSA is the first confirmation of success. Let’s hope it continues its “good” path.

I sense anxiety in your sentences;
“…. so I guess I shouldn't get upset. I was hoping for a lower reading but…”

That may be a side effect typical of HT (Firmagon). They come and stay unnoticed until we realize that have fallen into the “trap”.

This monthly post of yours may as well be giving you stress. Surely you are looking for a ZERO and that will come when the time is right. Relax.
My opinion as a comrade on this “boat” of survivors is for you to stop taking those monthly PSA tests and change to PSAs on 3 to 6 month cycles. They are sufficient to inform on any advance in your case.

I sincerely recommend you to go out and enjoy time with your family and friends. Do some travelling and commemorate your 3-month mile-stone success.

I raise a glass of my dearest red wine to celebrate with you.

Regards
VGama

VGAMA
I"m VERY HAPPY to see you are truly following my journey & I APPRECIATE your response more than words can say. THANK YOU for the reply ---this really made my day ---THANK YOU -THANK YOU. I only get the monthly blood test because the urologist orders it before I leave his office. My Primary physician also ordered a complete blood analysis which I didn't receive yet, I have to watch the Glucose readings etc. due to the affects of the hormone drug.
Other than that I feel GREAT & I'm going on vacation starting tomorrow.

THANK YOU SO MUCH
Codially
Rad Hopeful

RADIATION HOPEFUL

RADIATION HOPEFUL said:

VGAMA
I"m VERY HAPPY to see you are truly following my journey & I APPRECIATE your response more than words can say. THANK YOU for the reply ---this really made my day ---THANK YOU -THANK YOU. I only get the monthly blood test because the urologist orders it before I leave his office. My Primary physician also ordered a complete blood analysis which I didn't receive yet, I have to watch the Glucose readings etc. due to the affects of the hormone drug.
Other than that I feel GREAT & I'm going on vacation starting tomorrow.

THANK YOU SO MUCH
Codially
Rad Hopeful

LATEST psa RESULT
ALL WHO ARE FOLLOWING MY JOURNEY> i JUST RECEIVED MY psa LAB REPORT FOR aUGUST/SEP'T & IT WENT DOWN AGAIN ---I'M HAPPY WITH THE TREND.
NEW READING IS NOW (0.71) --- I'm very excited about the decline from last month where it was at 0.8----I assume this is a positive indication of the cancer cells dying.
Looking for a response & BLESS everyone that has this terrible condition.
I"m doing good & feel fine---

Rad Hopeful

VascodaGama

RADIATION HOPEFUL said:

LATEST psa RESULT
ALL WHO ARE FOLLOWING MY JOURNEY> i JUST RECEIVED MY psa LAB REPORT FOR aUGUST/SEP'T & IT WENT DOWN AGAIN ---I'M HAPPY WITH THE TREND.
NEW READING IS NOW (0.71) --- I'm very excited about the decline from last month where it was at 0.8----I assume this is a positive indication of the cancer cells dying.
Looking for a response & BLESS everyone that has this terrible condition.
I"m doing good & feel fine---

Rad Hopeful

Thanks for the post
RadHope

I hope that you have enjoyed your vacations and that the MONTHLY firmagon has not interfered with your scheduling.

Where did you go? Europe? Portugal?

Glad to know that the PSA keeps the down "trend" path.

Good luck.
VG

RADIATION HOPEFUL

VascodaGama said:

Thanks for the post
RadHope

I hope that you have enjoyed your vacations and that the MONTHLY firmagon has not interfered with your scheduling.

Where did you go? Europe? Portugal?

Glad to know that the PSA keeps the down "trend" path.

Good luck.
VG

PSA trend
Hello VGama

I enjoyed my vacation but it wasn't out of the U.S.A., I drove to the nothern tier of Pennsylvania & spent time in Potter County which is referred to as God's Country. It is beautiul & unspoiled like going back in time with dirt roads etc.
Regarding my recent PSA score/trend--do you think this downward trend is a sign of good things ahead? I get my next Firmagon shot on the 15th of this month. I believe the tech who gave the shot two months ago --botched it & that is why the reading stayed at 0.8 for two months. Last time the PA gave the shot & now the PSA dropped. "Your thoughts please"

Rad Hopeful

RADIATION HOPEFUL

VascodaGama said:

Thanks for the post
RadHope

I hope that you have enjoyed your vacations and that the MONTHLY firmagon has not interfered with your scheduling.

Where did you go? Europe? Portugal?

Glad to know that the PSA keeps the down "trend" path.

Good luck.
VG

PSA trend
Hello VGama

Repeat deleted

VascodaGama

RADIATION HOPEFUL said:

PSA trend
Hello VGama

Repeat deleted

Blessed Vacations on God's Country
Nice to know that you have enjoyed your trip to God’s Country. I would like to visit the place too. My vacations are scheduled for a visit to Japan this autumn and surely we will enjoy the peaceful hot springs close to Mont Fuji. (will return to Portugal very “clean”)

Regarding your last results, I take it as the expected trend of the PSA. Most probably you will see still lower numbers followed by a plateau. The PSA is known to be erratic and fluctuates in guys with the prostate gland “in-place”. Your protocol on HT is for two years but I read in some studies that one year on HT have shown identical results.
I wonder what would be your doctor’s answer to the same question.

The important is that after treatment, with HT stoped, the low level (<0.5) is keept. That may occur in two years.

Best regards,
VGama

RADIATION HOPEFUL

VascodaGama said:

Blessed Vacations on God's Country
Nice to know that you have enjoyed your trip to God’s Country. I would like to visit the place too. My vacations are scheduled for a visit to Japan this autumn and surely we will enjoy the peaceful hot springs close to Mont Fuji. (will return to Portugal very “clean”)

Regarding your last results, I take it as the expected trend of the PSA. Most probably you will see still lower numbers followed by a plateau. The PSA is known to be erratic and fluctuates in guys with the prostate gland “in-place”. Your protocol on HT is for two years but I read in some studies that one year on HT have shown identical results.
I wonder what would be your doctor’s answer to the same question.

The important is that after treatment, with HT stoped, the low level (<0.5) is keept. That may occur in two years.

Best regards,
VGama</p>

PSA/Vacation
Hello VGama

I THANK YOU FOR THE REPLY & wish you a very happy trip to Japan. WE don't care to travel on planes that leave the U.S.A. If you ever get to the states,you are welcome to visit Potter county with us. It's a four hour drive from my home base.
Potter County was given the name GOD's country due to the natural beauty of the mountains & green foilage. Winter is not that great a time to visit, Potter receives a great deal of snow.
Again THANK YOU for the reply & I will question my urologist on the time frame regarding the hormone therapy.

Rad Hopeful

muckdown

good explanation
I wish my urologist did more ,maby the shots(prostate came out in a operation). Just finished the IMRT 39 sessions The tattoos are a major factor. No modesty here .Your issued pants and they are stored in a tray,where you pick them up and change into them modesty goes out the window as you lay on the table under the varian. You hike down the pants and the female techs descretly apply a sheet right down to the public hairs to line up the machine with the tatoos. To me it was a big deal at first .After 16 days in a row.You don,t even think about it.Once the session was finished I used to wait untile the tech came back in the room ,but once the machine started to return to the home position I would have the pants pulled up and ready to leave.

muckdown

good explanation
I wish my urologist did more ,maby the shots(prostate came out in a operation). Just finished the IMRT 39 sessions The tattoos are a major factor. No modesty here .Your issued pants and they are stored in a tray,where you pick them up and change into them modesty goes out the window as you lay on the table under the varian. You hike down the pants and the female techs descretly apply a sheet right down to the public hairs to line up the machine with the tatoos. To me it was a big deal at first .After 16 days in a row.You don,t even think about it.Once the session was finished I used to wait untile the tech came back in the room ,but once the machine started to return to the home position I would have the pants pulled up and ready to leave.

RADIATION HOPEFUL

VascodaGama said:

Blessed Vacations on God's Country
Nice to know that you have enjoyed your trip to God’s Country. I would like to visit the place too. My vacations are scheduled for a visit to Japan this autumn and surely we will enjoy the peaceful hot springs close to Mont Fuji. (will return to Portugal very “clean”)

Regarding your last results, I take it as the expected trend of the PSA. Most probably you will see still lower numbers followed by a plateau. The PSA is known to be erratic and fluctuates in guys with the prostate gland “in-place”. Your protocol on HT is for two years but I read in some studies that one year on HT have shown identical results.
I wonder what would be your doctor’s answer to the same question.

The important is that after treatment, with HT stoped, the low level (<0.5) is keept. That may occur in two years.

Best regards,
VGama</p>

HORMONE THERAPY DURATION
VGAMA

I had my Firmagon shot yesterday & questioned the PA about the length of time I must be on Firmagon. He told me -- normal is 1 to 2 years BUT due to my high Gleason score, I need to stay on the shots for THREE years.
WHat is your opinion?

RAD HOPEFUL