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HAS anyone experience with PROLIA?

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

ALL

HAS anyone taken PROLIA for the bones? Please inform all of us your experiences. Does this drug just keep the bones in the condition they are wjile on hormone treatment, or does it build bone strenghth, especially in the long bones of the arms & legs?
PLEASE REPLY WITH YOUR PERSONAL EXPERIENCES. (I don't like what I read about the side affects)
THANK YOU
RAD HOPEFUL

mrspjd
Posts: 688
Joined: Apr 2010

RH,

I am sorry that you are facing additional challenging and difficult decisions.

Prolia and Xgeva are brand names for the same generic drug “denosumab.” They are Rx’d (prescribed) differently. The following links may be helpful in clarifying the difference:
http://www.cancer.gov/cancertopics/druginfo/fda-denosumab
http://reference.medscape.com/drug/prolia-denosumab-999566

Most experienced PCa oncologists Rx the brand name Xgeva for advanced PCa, so you may wish to ask your PCa onc why he is recommending the brand name Prolia vs Xgeva. You may also wish to expand your inquiries to men who are taking Xgeva. As such, a thread was recently posted by another CSN member asking the same questions as you, but with regard to Xgeva. Here is the link to that thread titled “Xgeva Experiences” http://csn.cancer.org/node/244285 I hope this info is helpful to you. I also hope you receive some replies to your questions about personal experiences with regard to either brand name drug for denosumab.

Best of luck.

mrs pjd

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

RadHope

It will be difficult to get many answers on Prolia experiences because it is a newer drug. You may try to find discussing on the drug in other forums dedicated to the treatment of osteoporosis, probably for women. Prolia is injected on six months periods, used in treating both; osteoporosis in women/men after the menopause and treating bone loss in men having hormonal treatment for prostate cancer.
Below is a link to healingwell;
http://www.healingwell.com/community/default.aspx?f=35&m=2309528
http://www.cancerinplainenglish.com/prolia-a-promising-new-drug-for-prostate-cancer/

Hope for the best.
VG

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Today I had a FIRMAGON shot on the right side of my stomach & a PROLIA shot on the left side.

Will keep posting with any side affects from the PROLIA. The shot with FIRMAGON creates a large lump in the stomach, nothing at the PROLIA site.
I did question the necessity of the PROLIA at my family doctor & he recommended I get the shot due to the results of my dexa-scan.

RAD HOPEFUL

VascodaGama's picture
VascodaGama
Posts: 1508
Joined: Nov 2010

I hope prolia manages to stop and control the bone loss. You need to use diet to "add" bone to your structure. It will take time before you see improvements. Meanwhile care for not breacking a bone.

What was the dose given to you?
What is the regimen to take the drug?
Is there any medication proibitive to take due to interaction with Prolia?

Thanks for sharing your experience.

Best.
VG

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

DEAE VG

I have no idea what the dose was but I get my next shot in March 2013. I am also taking Calcium/Vitamin D and Magnesium daily and added Vitamin K2 (mk4) 5mg.

Along with this, I also eat KALE in a salad daily--no dairy products----primarily chicken & fish.

NO medication necessary to counter interaction with Prolia. I did question the urologist about other patients taking the drug & was told NONE had a reaction. I ASKED IF THE DRUG FIRMAGON affected the bones & he confirmed ---YES---it's not due to cancer

Again I will share my experience as time moves on---THANK YOU for the reply--- APPRECIATE it.

CORDIALLY
RAD HOPEFUL

mrspjd
Posts: 688
Joined: Apr 2010

RH,

In your posts you mention your family doctor and your urologist. I seem to recall you were a G9 with high PSA? With the drugs you're on, I wonder if your care is being managed by an oncologist specializing in PCa.  An experienced and knowledgeable PCa Onc managing your care is extremely important, especially in intermediate to high risk PCa cases such as yours.  If a urologist & a fam doc are providing care, that may explain why, until recently a DEXA scan (or a QCT bone mineral image study) was not ordered by your doc until YOU requested it because of info given you on this site.  Has a baseline cardio work up (with a cardiologist) been ordered as is recommended for heart health when on ADT for extended length of time? I wonder if your current treating doc (a uro, a family doc?) ever ordered imaging tests (other than the standard bone scan & pelvic CT) to rule out bone mets, such as a F-18 PET/CT. If so, I wonder what the test results indicated.  

The knot or lump you feel at the Firmagon (degarelix) injection site (stomach) is from the drug pellet of Firmagon delivered under the skin (subcultaneously/SubQ) and is common for Firmagon.  Lupron & other similar ADT drugs differ in how they are delivered.  There is no drug pellet and they are injected into the muscle (intramuscularly) to the gluteus maximus.

Prolia & Xgeva injections (for bones, no drug pellet) are delivered Sub Q and per the manufacturer (Amgen) may be injected to the upper arm, thigh or stomach. You can read about dosing protocols and possible drug side effects on the url links that I previously gave you in the post above. Supplement with calcium 1000 mg/day and vitamin D 400 IU/day as per the manufacturer's drug guidelines or as your PCa Onc has instructed. 

Be well.

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello mrspjd

My family doctor had his prostrate removed.
YES--I"M under care of a cardiologist & have been since I had LYME disease which is how I found out about the prostrate problem. My oncologist advised that the Pet scan is not used in prostate cancer because it is not effective in detecting it. Prostate cancer is slow growing and this form of imaging does not work like it does for other cancers. They monitor the growth with psa tests and I have not completed the required 3 year hormone shots yet. Therefore, they would not be doing additional bone scans etc.
I"M taking the calcium etc. as you indicated.

THANK YOU FOR THE REPLY & your recall is correct with a G9 & initial PSA of 53.99

Cordially
RAD HOPEFUL

mrspjd
Posts: 688
Joined: Apr 2010

RH,

Glad you're under the care of a good cardiologist and I hope you are getting regular cardio follow ups. IMHO, having ones prostate removed does not qualify them as an expert on PCa, doctor or not, only as an expert on RP, maybe. Perhaps you misread my post as I suggested a F-18 PET/CT, not the standard scans which are often done first & usually find no mets.

Firmagon and other ADT drugs work to inhibit Testosterone & DHT production in your body, both of which fuel PCa, but are also necessary for bone and heart health.  It is the lack of T and its effect on bones that causes bone mineral loss as a result of prolonged continuous use (vs intermittent use) of androgen deprivation therapy (ADT) drugs such as Firmagon. As you may know, along with ADT, your recent osteoporosis dx puts you at increased risk of "skeletal events." that is why Denosumab was Rx'd. If bone mets are present, & I hope they are not and have been ruled out, then dosing protocol for Denosumab may need to be revised. A knowledgeable PCa onc may be helpful here too.

With all due respect, I hope you consider seeing the best PCa Onc you can find/afford, if only for a second opinion and peace of mind that everything is as it should be, and to answer some of the ongoing concerns & questions (in this & previous threads) you seem to have about your care. While this is a good forum for advice from lay persons, it is no substitute for expert advice from world class experienced & knowledgeable medical professionals/specialists, as is stated by CSN admin.

Best of luck.

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello mrspjd

"Thanks again for thr reply"

I'M FEELING GREAT---no Bone pain & I'm considered in remission---my PSA was down to 0.28 & now it's staying around 0.3 whih is fantastic according to the radiation oncologist at the hospital.

I HAVE A INDEPENDANT CARDIOLOGIST MONITORING MY CARDIO & see my primary doctor on a routine basis so I feel blessed that actually 3 doctors are looking after me.

I'll question the F-18 scan you noted to each as I see them. So far I'm glad I took the radiation route, it appears to have done the job. I feel sorry for the people that had SURGERY after reading some of their reports.
ALWAYS wishing the BEST for EVERYONE, sure hope technology comes up with a cure for this disease SOON.
THIS IS A GREAT SITE allowing us to discuss our issues with people such as yourself

Rad Hopeful

mrspjd
Posts: 688
Joined: Apr 2010

Hello RH,

First and most importantly, it’s wonderful to read that you’re feeling great, in no pain, and doing well! Congrats!

While I think it may be a good idea to run the F-18 PET/CT imaging question past your RO, GP, and Cardiologist as you indicated, FWIW, I don’t think you’ll get much good feedback. If anything, your previous threads seem to indicate your dissatisfaction with the lack of feedback and information from your current PCa medical team about addressing your PCa concerns and questions. To obtain relevant and current feedback on the F-18 and other pertinent information about your PCa care and PCa in general, as previously suggested, you may wish to consult with a world class, best of the best, PCa oncologist. Of course, that’s just my lay opinion.

My husband chose a similar (RT and ADT), but slightly different, PCa treatment course than yours after he was dx’d in February 2010 with high risk, high volume, locally advanced T3 stage PCa. His aggressive neo-adjuvant txs included ADT3, HDRB (High Dose Rate Brachy), and IG/IMRT. PJD is doing well and feeling great! He had no health issues prior to, and following, his PCa dx. He continues to remain healthy and active, with a very positive attitude. His main PCa treatment team included two radiation oncologists (RO), and an oncologist who specializes in PCa. Now, almost two years since completing all PCa txs, he checks in with his RO occasionally but, the bottom line is that the RO’s job is done. PJD sees a cardiologist and a GP for annual “healthy” check ups; however, it is his PCa Oncologist who he sees regularly (every 3 months) for PSA and related blood work and who manages his overall health care. For PJD, his PCa Onc is the most knowledgeable and up to date on all aspects of PJD’s PCa case. He is also the most up to date on the latest breaking information about all things PCa—that’s his job, his specialty and what he does best. (Although, sometimes I think my very well-informed husband has been known to share some of the latest breaking PCa headline news with his PCa Onc!)

I realize just how fortunate and lucky I am to have a husband who believes in, and shares, the “Patient Active” concept with me and who understands how important it is not only for him to be well-informed/educated about PCa, but how important my PCa education is as well. Only in this way have we been able to address this “health issue” head on as a cohesive team united in our advocacy to obtain the best possible doctors, treatments and care as we navigate this PCa journey together.

All the best.

mrs pjd
wife of a PCa Survivor

Samsungtech1
Posts: 350
Joined: Jan 2011

Hopeful,
I guess because my cancer metastisicized my Onc does CT scans every three months. I went to six months and my lung nodules doubled. Back to three months again. As I stated previously my Onc feels that the cancer goes to the bone, or the organs. No guarantee where it will go. Have they done CT scans on you? To me, it seems like a good idea. Having your abdomen and chest scanned gives you a starting point. I realize you are in remission, so am I, but CT scans are easy. Just a thought.

Mike

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

SAMSUNGTECH1

Thank YOU FOR THE ADVICE----I will mention the time period to my ONC-- THANKS FOR THE REPLY

I did have CT scans done & they are clear which is why they felt the drugs caused the dexa scan to have poor readings.

RAD HOPEFUL.

mrspjd
Posts: 688
Joined: Apr 2010

RH,

To avoid any confusion and just to be clear, I was suggesting an imaging test called an F-18 (FDG) PET/CT (different from the standard bone scan & pelvic CT). IMHO, absolutely NO reason to repeat any bone imaging test every 3 mos--that's excessive. The F-18 (FDG) PET/CT uses the technology of both CT and PET to fuse images in order to better identify if bone mets are present.  In patients where bone mets are present, skeletal images may inform the doctor about how the patient is responding to drugs like Denosumab (Prolia/Xgeva). F-18 is a specialized imaging test that's not offered everywhere, but is usually covered by Medicare (at least in most states).  Some larger medical clinics, institutions & medical centers of excellence may offer it.  If you're being treated at a center that doesnt offer it, its likely your RO won't mention it (shame on him).  I also question your doc's recommendation for 3 continuous years of ADT (hormones).  IMHO, his advice is not up to date or based on the latest findings and current thinking about intermittent ADT protocols (IAD) vs continuous (CAD). You can read a recent thread that discussed that topic. All this is where a knowledgeable oncologist who specializes in PCa (outside consult, NOT a colleague of the current medical team) plays a key role and may make recommendations for managing your PCa case independently of the RO, Urologist, etc.  You may even decide to do only a few consultations a year with an expert PCa onc (for peace of mind) while still remaining with your current medical team. While we all pray for a cure, seeking out the best expert medical advice possible should not be overlooked as another crucial part of the "journey."

Here's more info on F-18 imaging, bone scans & other bone imaging that might be helpful:  
http://prostate-cancer.org/PDFs/INSIGHTS/Insights-May-2012-jan.pdf

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Hello MIKE

WOULD you mind telling me what ypur current pSA level is? You stated you are also in remission & i'm curious what you PSA is. I'm relying on what my oncologist told me, that the hormone drug affected my bones & not the cancer.
THANK YOU for the info & reply---I appreciate it

RAD HOPEFUL

Samsungtech1
Posts: 350
Joined: Jan 2011

My PSA after RPwas .035 and rising. Already had nodules geowing in lungs, so not to good of a guide. I had a .0000 after my radiation treatmentsfor lung nodules. Now is .035. I really do not worry about it too much. I am starting to travelandtold them. I might not be around for my shots. I really donot like being on a short leash. Life is good and we need to live it. Not giving up, but am tired of being tied to a leash.
Hope all goes well with you.

Good luck,

Mike

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

Dear Mike

"THANKS FOR THE REPLY"

Wishing you the best in your travels ---Hope they find a cure for our disease

NEVER HAD A .000 even after radiation treatments--lowest I got was a 0.28
Doing a lot of praying

Rad Hopeful

RADIATION HOPEFUL
Posts: 206
Joined: Dec 2010

I got the OCTOBER PSA results today & the number now went down to 0.28 again-----last month it was 0.31.. In JUNE of this year I had a 0.28

LOOKS like I may have hit NADIR---comments appreciated

RAD HOPEFUL

Osirissail
Posts: 1
Joined: Apr 2013

I have Stage IV HRPC and have been on the new Zytiga+Prednisone along with Lupron Depot for about a year after becoming non-responsive to classical Biclutamide treatments.

All of which treatments accelerate osteoporisis significantly which resulted in five of my vertebrae collapsing and fracturing.  Successful Verteplasty operations repaired the fractured vertebrae and when asked on how to slow or stop the osteoporosis, my oconologist prescibed Denosumab treatments with Xgeva (@$3000 per shot per month).  I had to sign a statement recognizing the possibility of Osteonecrosis of the Jaw - that set off warning bells in my mind and I initially looked up the side effects of Denosumab. 

After two shots (2 months) I terminated the treatments as my jaw pain went from zero to off-scale and other adverse side effects made the Denosumab treatment worse than my fractured vertebrae.  Probably a case of the cure being worse than the disease.

Anyway, I just found out how Denosumab works (see: http://www.algaecal.com/Blog/denosumab-aka-prolia-xgeva-even-worse-than-the-bisphosphonates/11454) and suggest anybody considering Denosumab seriously think twice about it.

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