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Radiation with Hormone Therapy-Firmagon

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello Kongo ,VGama & ALL wanting to follow my journey. I took the advice of Kongo & will post my journey on this site.

A few details> Original PSA was 55 , Gleason score of 9. Both Bone scan & MRI were clear-no metastasis. Also had a cystoscopy & confirmed nothing spread to the bladder. Had 3 gold seeds inserted into the prostrate January 12,2011 which will act as a GPS to guide the radiation beam to the prostrate. Latest PSA after two shots of Firmagon was>4.1 Got a third shot in the stomach 0n Jan.26th --in a month I'll see what the new PSA reading is--
hoping it goes to zero especially with the radiation treatments helping it along. The prostrate also shrank & was 17 grams vs. original of 30.

Yesterday -January 28,2011 I was told I will be receiving a wide beam dose of radiation (180 Grey) with 80 concentrated to the prostrate. (I was very concerned with the high dosage & questioned it)This will cover the siminal vesicles & lymph nodes in case any microscopic cells are located there. I was also told-The higher dose to the prostrate alone is to help assure the cancer doesn't return in years to come.
After some research, I accepted it & just for info> according to CURE magazine ---radiation is the NEW surgery without using a knife.
Two sessions were held prior to the start of actual radiation. One was to make a form fitting mold of my upper torso, apply 3 very small tattoos(size of a freckle)to the area being treated again for alignment of the form assuring I'm in the same position every day--similar to a jig if your a machinist.
The second was a simulation run to take X-ray pictures for proper mapping of the beam. Treatment day> you undress in a private room (remove everything from the waist down--you can keep your shirt & shoes on)--I was given a gown & a sheet to wrap around myself due to the open rear. I laid on a table with the VARIAN machine directly above me , the technicians adjusted me via moving the sheet around & adjusted the table to line up all the marks,the body cast was installed & the technicians left the room. They stay behind a 5 ft. thick wall but can talk to me with a microphone etc.-pictures are also on monitors they watch. The machine made two 90 degree arcs on both sides of my body --I didn't feel a thing & it was over (time -less than 10 min.) Forgot to mention I had to drink 16oz. of water prior to start --this helps keep the bladder out of the way. Got up, went to dressing room & left. So far so good--no discomfort but realize this was my first treatment. Hopefully this initial dose killed some of the cancer cells. Cordially
Radiation Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Thanks for the reply regarding Flowmax--I took one of the capsules at lunch today---prior to reading your memo. Should of looked for replies first--my mistake. If I have any issues, I''l post them. The radiation technician this morning--suggested I take one after eating my noon meal which is what I did.
UPDATE> March 4th---ended my first week of cone down radiation. I asked the tech if this cone down was IMRT or IGRT & was told what I'm receiving is better it's called RAPID ARC. I was surprised to hear the term as I thought I was getting IMRT all along. Anyhow have been taking FLOMAX for a couple days now & it did allow a better urine stream. I noticed some small stones coming out when I urinated--apparently bladder stones from not voiding totally earlier. Hope this isn't another serious condition. I do feel better lately & got new blood work results. Everthing is within the forcasted reange including my lymphocytes which dropped from 21% to 15% but within range of 14% to 44%. Drop is probably due to body fighting any infection that may be present. Another Blood test in two weeks which will include PSA & Glucose checks. >>>>>>>>>Comments WELCOME
Will keep posting as the saga continues.
Again BLESS all going through these perilous journeys

Rad Hopeful

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Kongo
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Joined: Mar 2010

Hopeful. Rapid Arc is indeed IMRT. It is the name of the Varian equipment (the manufacturer) used to deliver the fractions.

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Kongo
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Joined: Mar 2010

Hopeful. Rapid Arc is indeed IMRT. It is the name of the Varian equipment (the manufacturer) used to deliver the fractions.

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello Kongo

Thanks for the reply, today is the 8th cone down treatment & due to some burning & discharge in my urine, I had a urine culture test done at the hospital.

Pleased to report no sign of infection. I was told the problem I'm having may be due to irration of the bladder from the rad treatment. (Glad no infection)
After today I have 11 more cone down treatments & again I'm feeling "OK"-- drive myself to daily treatments, see the rad oncologist every week & pray this approach works for me. "Next week I will have another blood test & will post results"

Bless everyone with whatever your dealing with, wishing the best of outcomes for everyone

Rad Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello All

For those following this venture, I had a complete blood count & PSA results this morning.

PSA is now at 1.6 which is another 37% drop from the 2.64 in February. Although it's going down, I was hoping for a lower number.

Results so far> November 2010 --- 53.99
December 2010 --- 17.87
January 2011 --- 4.18
February 2011 --- 2.64
March 2011 --- 1.66

Next Hormone shot is Monday March 28,2011

The following were shown as low on the blood analysis

Hemoglobin> 13.0 g/dl
Hematocrit> 38.2%
RBC> 3.94 mill/cmm
Absolute Lymph> .9 thous/cmm
Lymphocytes> 16.0%
One item was shown as high& that was something called NEUTROPHILS> 74
All the other readings were within ranges given

Looking forward to input from my friends following this radiation journey
Again Bless everyone with their fight whatever the condition.

Rad Hopeful

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Kongo
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Joined: Mar 2010

Hopeful,

Your PSA numbers are plummeting which is fantastic. I predict you will be below 1 within a few months.

Hang in there. Presumably you've survived the treatment with no ill effects.

K

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VascodaGama
Posts: 1526
Joined: Nov 2010

RadHope
I am glad to read about your positive news. One more week and you receive the title of “Survivor" of PCa treatment. Congratulations.
Your immune system is active in the fight of any infection. The white blood cells (neutrophils) are in abundance and “alert” to guard against any side effect from the treatment.
Firmagon has been “friendly” and did not affect you which is extraordinary too. A few more months and you will receive the last diagnosis.
Have you thought what you are going to do after all this? Retirement?

I hope that you become cancer free and that you will share your experience with other comrades in this bumpy road. Maybe you could write your story at YANA site.

Wishing you the best.
Vgama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Thanks to Vgama & Kongo for replies--appreciate it.
Next week I have 4 more radiation treatments --then done & looking forward to final analysis.
VG--Thanks for the (neutrophil) explanation, I thought it was something bad with a high reading---the range was 40 to 70 & I had 74.
I have been fortunate with the tremendous decline of PSA over the past few months--From 54 to 1.6 is fantastic, I just hope the radiation did it's job in killing the cancer cells. I keep myself busy & last Friday when I got home from the hospital, I shoveled a ton of mulch on a wagon. My strength is good & the only problem I had with the Firmagon is the large welt it leaves on the stomach for several days. I believe I read it takes months to rid the body of the dead cancer cells & that although dead are counted in the PSA readings. If anyone knows this to be true I would appreciate a reply.
Working on the farm keeps me busy all the time & I look forward to Spring & Summer when the temps are better--no more plowing etc.

Again THANKS for the replies & Bless everyone

Rad Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

ALL

It's now 12 days after my last rad treatment & the only issue I have is urgency to urinate especially after doing some physical work. I don't know how long this will last, it also burns when I urinate. anyone have input regarding this affect?

Rad Hopeful

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VascodaGama
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Joined: Nov 2010

RadHope
After radiation treatment is common to experience urgency in urination and burning sensation due to inflammation at the bladder neck (sphincter). The burning is caused by the constant passing of urine at the urethra inner walls.
If left as it is, infection could cause urethral stricture (tightening of the urethra piping) which would require a cystoscopy manoeuver to widen (dilate) the urethra with a widening device or by cutting the stricture (under local anesthesia). Pain could signal such advanced status.

Usually medications for inflammation (antibiotics) do the job. You should inform your medical team about this symptom.

What about any other symptom? Have you experienced soft uncontrollable stools?

These side effects are usually short lived. Hope you get better the soonest.

Wishing you a smooth recovery from treatment.
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello VGama

Once again THANK YOU FOR the response.

Today is day 14 after treatment & the burning is subsiding, I don't have any trouble with stools other than a little burning now & then--eating a lot of apple pie keeps things regular & formed well. The urgency to urinate is bothering me especially after I drink fluids. I'm drinking a lot of craneberry juice.
I will be seeing the urologist at the end of the month, perhaps by then I'll be better, I will also get another blood test. I have to see my primary for the complete blood test, the hospital doesn't monitor it after radiation is complete and my urologist has a business office himself away from the hospital staff. I wiil mention the urgency to all three doctors providing it continues. (I did read on the internet it could take a few weeks to months for the burning & urgency to subside ---I was afraid something else was wrong)
Thanks for the reply--I truly appreciate it.

Rad Hopeful

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Kongo
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Joined: Mar 2010

Hopeful,

As Vasco mentioned, the symptoms you're experiencing are quite common following radiation. Drinking cranberry juice is a smart move as it neutralizes the acid in the urine. Although the urethra is quite tough tissue, radiation sometimes causes temporary inflammation which can be mildly painful and irritating. Besides cranberry juice you may wish to try an OTC anti-inflammatory drug such as Advil which can reduce the inflamed areas, promote quicker healing, and reduce the urgency issues.

I don't think you have anything at all to worry about but please discuss any symptoms with your doctor during your next visit.

In almost every instance, these symptoms subside within a few weeks to a month of treatment.

Best,

K

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Vasco & Kongo are like having access to doctors ---VERY helpful in decscibing in layman terms answers to many of the posts on this site. I can't speak for everyone but> personally THANK both of them VERY much for sharing their knowledge & answering some difficult questions.
Keep up the excellent work --it is truly appreciated by many.
Thanks for enlightening me about the cranberry juice--I will keep drinking it ( I dilute it with a little water due to the bitter taste. I feel beter after reading these posts.

The urologist called back & is prescribing Procet for the burning. I'm going to try the Advil approach first.

Rad Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

AL > Just received my latest PSA report---It continues to go DOWN>>> latest reading is 1.09
last time it was 1.66---a far cry from the original 54.
I assume this is a good sign & I'm elated the trend is still downward. I'm feeling pretty good, working in the yard & the side affects from the radiation are disappearing such as urgency to urinate with burning etc.
"Any comments are welcome"

Rad Hopeful

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VascodaGama
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RadHope

Congratulations on your latest results. I am glad to read about your symptomless progress. PSA takes time to get to nadir after radiation. Some guys report taking two years to get to the lowest level. In my case it took 13 months from the end of treatment.
The adjuvant hormonal therapy (firmagon) is relevant in the level of PSA but the RT is the one that have “blown” the cancer.

Wishing you the best.

VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Thanks to everyone answering & following my journey-(especially Kongo & VGama).
Thought I would let everyone know I'm doing very well, with my last PSA at 1.09 & 46 days post radiation treatments I feel good. Yesterday I loaded,unloaded & stacked two tons of pellets (40 lb. bags). I don't get another Firmagon injection until June & will have my PAS checked before that time again.
Bless everyone fighting this terrible disease.

Rad Hopeful

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VascodaGama
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Joined: Nov 2010

RadHope
I enjoyed reading your post. PSA=1.09 is equal to the previous but it does not surprises me. You may see fluctuations and "plateaus" along the recovery period before it reaches nadir.
The physical exercises from loading those pellets will help in your recovery.

The best to you.
VG

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello V gama
Sorry if I confused anyone but that was the latest PSa reading from last month, I didn't get tested this month yet. I just wanted to inform all how well I was doing. I will post the next blood test reading when I get it later this month.

Rad Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello V gama
Sorry if I confused anyone but that was the latest PSa reading from last month, I didn't get tested this month yet. I just wanted to inform all how well I was doing. I will post the next blood test reading when I get it later this month.

Rad Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

ALL

All following this journey--- (Had my PSA results today & they came back as 0.78)
Also had another shot of Firmagon but the doctor wants me to switch to Eligard.

I'm reluctant to do so based on the side affects I read about on ELIGARD.
GOT a month to think about it---OPen to comments
I'm pleased with the PSA still going down --any thoughts on this milestone?

Bless all
Radiation Hopeful

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VascodaGama
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Joined: Nov 2010

RadHope

I am very pleased to read about your success. Another lower PSA result, and still more to come. I wonder if you have experienced with certain intensity any symptom in regards to HT. Something that you could relate to; Hot flashes, Fatigue, Decrease in the size of the testes, Dizziness, etc.

I say this because you are reluctant to change Firmagon to Eligard and I cannot understand why your doctor would suggest such a thing when your results demonstrate that the actual protocol is correct.
If your lipids or any other health marker is within the limits particularly the liver health, then I do not see a “clear picture” for the change.

Surely Eligard will also do the job, and its side effects are in fact similar if one compares the results from trials in shots of the same grade (1-month shot), however, medication is metabolized differently in different bodies and that leads to side effects being more acute in some guys than in others.
If you are doing ok with Firmagon I would suggest you to continue on that drug. But, if you cannot alter your doctor’s opinion then try to get the 1-month shot of Eligard which seems to be the one with lesser side effects.
Have a look in this site;
http://www.drugs.com/sfx/firmagon-side-effects.html

The worse side effects actually are due to the low testosterone in our body which both drugs cause equally. The drug itself also have reactions directly affecting our pituitary function such as “pituitary apoplexy”, but that usually is reported from cases using the drug continuously in long periods of time over 4 to 5 years.
You can read about the symptoms here; http://www.medscape.com/viewarticle/518323_6

Your case as I recall, it is for a short period of one to two years, or less if your PSA demonstrates a continuous low plateau.
The only justification logic that your doctor may be thinking is to change due to a practical use of a 6-month shot (like mine) that would avoid your monthly visit to the clinic to have a shot as well as avoid the shot reaction in the skin.

I hope my insight is of help to your decision.
Wishing you the best.
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Thank you very much for the reply, The most recent shot was given in my stomach by a new technician & she didn't have enough experience in my opinion. She stuck the needle straight into my stomach instead of on a angle then bent it sideways when the PA came in. I also had to tell her to go slow on the serum insertion--some actually ran down my stomach, the needle wasn't tightened to the syringe properly. I'm going to call MOnday & complain about this, I don't ever want her to give me a shot again. I had pain all night & the lump on my stomach is large. All previous shots were done by another tech who did it properly & I never had any pain. I don'y have any dizziness, do experience an occasional hot flash & minor tiredness.The lipids are all within tolerant ranges.
The PA wants me to go to the 4 month shot of ELIGARD due to it being cheaper & my not having to see him but 3 times a year for 3 years. Personally- I'm content with the monthly Firmagon providing it's given properly. Since I have a choice , I'm rather certain I'm going to stay with the FIRMAGON.
AM I at the point of cancer remission? I don't see the radiation oncologist until November of this year. How will I know when I reach NADIR?? Seldom ever see the urologist doctor only the PA(physician ASsistant)
I'm very Happy with the PSA results & appreciate your reply.

Cordially
Rad Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Thank you very much for the reply, The most recent shot was given in my stomach by a new technician & she didn't have enough experience in my opinion. She stuck the needle straight into my stomach instead of on a angle then bent it sideways when the PA came in. I also had to tell her to go slow on the serum insertion--some actually ran down my stomach, the needle wasn't tightened to the syringe properly. I'm going to call MOnday & complain about this, I don't ever want her to give me a shot again. I had pain all night & the lump on my stomach is large. All previous shots were done by another tech who did it properly & I never had any pain. I don't have any dizziness, do experience an occasional hot flash & minor tiredness.The lipids are all within tolerant ranges.
The PA wants me to go to the 4 month shot of ELIGARD due to it being cheaper & my not having to see him but 3 times a year for 3 years. Personally- I'm content with the monthly Firmagon providing it's given properly. Since I have a choice , I'm rather certain I'm going to stay with the FIRMAGON.
AM I at the point of cancer remission? I don't see the radiation oncologist until November of this year. How will I know when I reach NADIR?? Seldom ever see the urologist doctor only the PA(physician ASsistant)
I'm very Happy with the PSA results & appreciate your reply.

Cordially
Rad Hopeful

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VascodaGama
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Joined: Nov 2010

RadHope

Firmagon in the stomach? You mean that she “perforated” the skin and stomach and injected the medicine inside the stomach? Do you really mean that or abdomen?

What an experience you had with that “lady”. I hope the PA has taken notice of the problem and that you get a clear response from them on Monday about the matter. If your doctor is not available then see another one but do not leave the matter unchecked.
I know that agonists should avoid to be injected in veins due to bad reaction.

In my last shot the nurse was new to hormonal depots. She did not know that the two syringes (A with atrigel and B with leuprolide) should be mixed connecting the two syringes and actionating the plunger back and forth about 60 times. I had to instruct her in all the steps. I also had it done in the abdomen without any pain.

I did not know that your protocol is for 3 years. Many guys with similar treatments as yours have HT for periods of 6 to 18 months, and some of them stop HT earlier once the PSA stabilizes. Your doctor may want to have you on a longer period because of your diagnosis prior to treatment. Nevertheless, you have not reached nadir yet.

It is logic that a monthly injection is bothersome if one could avail it of a longer span. Eligard 4-month depot is also friendly when looking into its side effects and you could try with an initial 1-month shot, moving up latter.
If you get nasty symptoms you can go back to the Firmagon again. The medication intent is to keep your testicles “out of service” for a low testosterone level in your body.
The drug has no effect on the cancer itself.

The major side effects for Eligard 4-month shot are described as; hot flashes, fatigue, nausea, joint pain, itching and urinary frequency. Eligard has been friendly to me, being fatigue the most annoying. You can read about it here;
http://www.eligard.com/side-effects/eligard-side-effects.aspx

The point of “Remission” is difficult to define. In another forum I wrote like this:

“Keep a close eye and be prudent in your decisions” may be the best translation for Remission. A number is just another “marker” which does not reflect the whole spectrum of one guys’ status. Remission could be taken with the meaning as absence of symptoms which indicates a successful treatment”.

That said, you are in remission but the success of your treatment can only be certified when your PSA plateaus (stabilizes) and stays there for a long period.

In regards to “Nadir”, you have to be patient and wait for that to come. In my case it occurred 13 months after ending IMRT. I am different than you because I have no prostate, so the curve declines quicker.
In your case under HT after IMRT with a prostate, you will also get a nadir. The difference will be that yours may take longer time to reach. HT can also affect the PSA level (lower PSA) but the number is REAL. A PSA under the influence of HT is not a “faked” value. The important is that the PSA stays continuously low, once the treatment effectiveness ends.
Expect your PSA to go still much father down than 0.78 ng/ml.

I hope you could understand my layman’s explanation.

VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

V Gama
Thank you for the reply--I truly appreciate it.
The shot was given in the abdomen next to the belly button.
I look forward to reaching Nadir & understand your layman explanation. My radiation treatment ended March30 of this year. (I'm looking forward to stabilization) Is it possible to reach 0.0 PSA if you still have your prostrate?
I'm rather certain I will stay on the monthly Firmagon shots since it is friendly to me when administered properly. (Why change when something is working "OK")
How much lower do you think it's possible to go with PSA readings while taking the hormone drugs?
I appreciate your reply & look forward to a another response.

Cordially
Rad Hopeful

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VascodaGama
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Joined: Nov 2010

RadHope

Yes, I believe that your nadir will be in the 0.0 range.
My understanding is that guys on HT only (with the prostate and no other treatment) get to levels of 0.07 to 0.1 when they use an LHRH agonist. If they add an anti-agonist (ADT2) such as Casodex then the PSA goes futher lower to the 0.02 to 0.08 bracket. Guys on ADT3 (triple blockade) with added 5-ARI such as finasteride still go futher to the bracket of <0.01.

Nevertheless you have a challenging case with an initial high PSA on the 53th and Gleason score 9 which may give you a different outcome.
The important is that your PSA keeps stable in a level between 0.05 to 0.15.
You could start a new thread to inquire on the experience of other survivors with similar treatment (IMRT + adjuvant HT), in regards to their nadir PSA and the time it took from the end of IMRT.
Have a look on this guy's story. His PSA went down to 0.01 (http://www.yananow.org/Mentors/AlanJ.htm)

Wishing you the best.
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

I received my PSA report today & I'm rather upset. IT actually increased to 0.83 from 0.78 & I'm concerned. IS it because of the way the shot was administered last time by a new trainee? Much of the serum ran down my stomach, the needle wasn't tightened & the new tech didn't apply the needle properly at a angle.
Perhaps I'm reading into this too much I don't know but I did expect the PSA to keep going lower. I will see the urologist on Monday the 11th & inform him I will not accept a shot from the new trainee.
I realize it's not much of a rise -- but shouldn't the PSA keep going down?
"Please respond"
Rad Hopeful

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VascodaGama
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Joined: Nov 2010

RadHope

Do not be upset for the slight increase of PSA. As you commented the cause could have been due to the inappropriate way of the injection but it also could be due to “bounce” which is typical in cases post radiation treatment.
The problematic shot of last month could cause the rise because the quantity of Eligard injected into your belly was not the full dose (your writing; “…Much of the serum ran down my stomach…”). You can check about it with a testosterone test. An increase of PSA in a Low Testosterone status could have a different meaning.
Nevertheless, the increase is not much and you can draw your conclusions in your next PSA checkup.
Just google “PSA Bounce” to read about details of its meaning in the contest of your RT treatment.

I recommend you to check your testosterone levels too, to have it as base data in future.

Regards.
VGama

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

THANK YOU for the reply.I will follow your recommendations.
I typed in PSA bounce after radiation & was surprised to learn ---many men have a psa bounce after radiation & those who have it under a year of hormone therapy have a much less chance of recurrence. Supposedly the dying cancer cells give off their PSA-- I can only hope this is what happened & the cancer cells are dying.
Again THANKS for the reply --I truly appreciate it.
"Bless you"
Rad Hopeful

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Kongo
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Joined: Mar 2010

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

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

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

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Kongo
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Joined: Mar 2010

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

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

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

shadowman
Posts: 16
Joined: Nov 2011

My diagnosis and scheduled treatment is just about the same as yours I see the last post was in July How are you doing now?

shadowman

muckdown
Posts: 27
Joined: Jul 2011

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

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

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
Posts: 206
Joined: Dec 2010

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

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VascodaGama
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Joined: Nov 2010

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
Posts: 206
Joined: Dec 2010

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
Posts: 206
Joined: Dec 2010

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's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

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
Posts: 206
Joined: Dec 2010

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
Posts: 206
Joined: Dec 2010

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's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

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
Posts: 206
Joined: Dec 2010

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
Posts: 206
Joined: Dec 2010

Hello VGama

Repeat deleted

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

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
Posts: 206
Joined: Dec 2010

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

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

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

muckdown
Posts: 27
Joined: Jul 2011

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.

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