Bone Density Treatments

Will Doran

After two years of Lupron, and 8 Weeks of Radiation, following a Radical Prostatectomy, I am now looking at Bone Density concerns in my Femurs.  I had a Bone Density Scan in 2014, it was acceptable.  Two years later, Just two weeks back, I had another bone scan.  All bones have increased in Density by 1 - 2% over the last two years, except for my hemurs. They have decreased 12%.   My doctors had told me that this might happen, because of the Radiation and Lupron.  I am now waiting for replies about treatment.   I was taking Calcium but then my blood Calcium went up to a level that, at that time was listed as above normal.  They have now changed the level of Blood Calcium that is considered too high and I'm fine where I am.    My GP is suggesting treatment for this concern.  What are the medications that are used for this treatment?  I've looked on-line, and found some lists, and most of them are things you see advertised on TV under "Ask you doctor about---"  I am doing all the weight bearing exercises that were suggested two years back and taking Calcium Supliments, Vit.D, Magnesium, Plus Boron in a joint suppliment. So, I guess I need suggestions as to what has / does work for those of us in this situation.  I would appreciate any comments / suggestions so I have ideas when I talk to my doctors.

Thanks for any suggestions

Peace and God Bless

Will 

Old Salt

Osteopenia or osteoporosis?

To respond sensibly (I hope) to your query, we would need to know whether the porosity of your femurs puts them in the osteoporotic, osteopenic, or normal range.

And what about the other bones, like the spine?

Will Doran

Old Salt, I went back to

Old Salt,

I went back to the message my GP sent me through my Medical Portal through the Hospital.  It says My Spine has actually increased in Density by 1.1% over the last two years but my "Femur has decreased by 12.7% and is considered nearly Osteoporotic."  Those are his exact words.  It was the PA at Chemo Oncology who ordered the Bone Density Test.  I haven't heard from Chemo Oncology.  I had copies sent to my GP and My Urologist / Surgeon, and the Radiation Oncology Department. My GP, a former student of mine, is very quick to repond on stuff like this and is the first one to contact me.  I have a call in to my Urologist to get his input.  Both my GP and Urologist were "off" on Friday, and will get back to me Tomorrow (Monday).  As I remember, two years back I was listed as slight  Ostopena and now they say "nearly Ostoporotic".  I think that's why my GP wants to start treatment ASAP.  I was told, by the Radiation Oncology Department, this probably would happen after being on 8 weeks of Radiation and two years of Lupron.  This would be the areas of my legs that were under the Post surgery Radiation Treatments.  Which I was warned about even before I started the treatments. 

Thanks

Peace and God Bless

Will

VascodaGama

Walking is good therapy to make bone

Hi Will Doran

I think that we PCa survivors should be vigilant with our bone health; in particular those guys on long periods of hormonal treatment and those with bone metastases. Pca likes to “spread” in weak bone.

Unfortunately urologists do not care much if we have osteopenia or osteoporosis and blindly (no test requested) pass us prescriptions for hormonal drugs for unlimited periods. It is typical for them to request bone scans with the intent of verifying if cancer is ALREADY in bone, not before, and then, if found to be positive will recommend a protocol of bisphosphonates.

The problem is the hypogonadism status (kind of menopause) we turn into when taking HT. It seems that long periods affect the way we make or lose bone, the balance between osteocast and osteoblast is disrupted in favor of the cancer. Dr. Myers has a video explaining detail and in his book he lists a series of recommendations. The treatment with bisphosphonates has its risks because it may lead to osteonecrosis of the jaw. This is bad for those requiring any tooth or mouth repair.

In my systemic case I will depend much in the future on HT drugs and probably I will endure at some time long periods of hypogonadism. For that purposes I have been careful to incorporating beneficial foods into my diet and some promiscuous affairs in my life style. Figs and almond nuts seem to be good, and so it is cheese, sardines and dark colored cabbages. Oranges are very good and to round up I drink red wine. Vitamin D is a must have. Fortunately all the above is naturally grown in the region I live (The Algarve). The traditional sunshine of this region is also agreeable to an outside life style for long walks and some golf.

I think that Old Salt wants to know your T-score. This is the way we measure our bone status. I last measured T=-1.2 refering to osteopenia. Osteoporosis starts at -2.5.

Here is a link for results; http://nof.org/articles/743

The problem with bisphosphonates is here;
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/about-bisphosphonates-and-jaw-problems

The link to Dr. Myers video is this;
http://www.prostatepedia.net/blogs/ask-dr-myers/61779651-bone-loss-adt

Here is a link provided by Hopeful for a better way to test bone health;

https://csn.cancer.org/node/261470

Best wishes,

VG

Will Doran

T Scores

VG,

Thanks for your input, and the links.  At this time, I am riding my Spinner Bike up to 90 minutes per day, walking on my treadmill doing free weights here at home, going to the gym twice a week for 1 1/2 hours and working out on the weight machines, doing leg presses, and all the other machines they have there for Abs and Upper Body, and Spine.  My trainers and Physical Therapists are there and make suggestions, as needed, to help me with my exercise.  They are now aware of my bone density concern and advised me on Friday as what to do on the leg press machines to help.  I eat lots of dairy, vegetables, nuts, fruit, fish, and hit the red meat sparingly. I take a Vitamin D supplement every day plus Magnesium, as advised by my GP, Urologist and my Oncologists from Radiation and Chemo. They had me on all that, plus Calcium, before I had any of my 8 weeks of Radiation treatments.  In fact I started those supliments shortly after my Prostateectomy, as they recommended.

As to the scores you refered to, I don't know those.  However I will hear back from my GP, and Urologist /Surgeon, probably, today.  I'll ask my GP for those scores. He said he would send me a copy of the results if I wanted it.  I assume I will also get input from Radiation and Chemo Oncology.  The Bone Density test was ordered by Chemo Oncology.  My GP said the bones looked good from the scans and he didn't suspect there were any signs of bone metastases.  So, he wants to get treatment going, I supposed to prevent further bone loss and the possible spread of any cancer to my bones. (from what he said in his e-mail)

I was asking for types of treatments, because I want to research the possibilities and check for side effects. I'm Just starting to have the side effects of two years of Lupron weaken.  I'm trying to learn what side effects I might be facing with these treatments that are being suggested. 

The links were / are very helpful.  Especially the video.  I have saved those links and will talk about the low dose estrogen patches with my doctors. At some point that was mentioned to me as a possible treatment if we needed to have bone density treatment. 

Thanks again for your input 

Peace and God Bless

Will

Old Salt

Will Doran said:

T Scores

VG,

Thanks for your input, and the links.  At this time, I am riding my Spinner Bike up to 90 minutes per day, walking on my treadmill doing free weights here at home, going to the gym twice a week for 1 1/2 hours and working out on the weight machines, doing leg presses, and all the other machines they have there for Abs and Upper Body, and Spine.  My trainers and Physical Therapists are there and make suggestions, as needed, to help me with my exercise.  They are now aware of my bone density concern and advised me on Friday as what to do on the leg press machines to help.  I eat lots of dairy, vegetables, nuts, fruit, fish, and hit the red meat sparingly. I take a Vitamin D supplement every day plus Magnesium, as advised by my GP, Urologist and my Oncologists from Radiation and Chemo. They had me on all that, plus Calcium, before I had any of my 8 weeks of Radiation treatments.  In fact I started those supliments shortly after my Prostateectomy, as they recommended.

As to the scores you refered to, I don't know those.  However I will hear back from my GP, and Urologist /Surgeon, probably, today.  I'll ask my GP for those scores. He said he would send me a copy of the results if I wanted it.  I assume I will also get input from Radiation and Chemo Oncology.  The Bone Density test was ordered by Chemo Oncology.  My GP said the bones looked good from the scans and he didn't suspect there were any signs of bone metastases.  So, he wants to get treatment going, I supposed to prevent further bone loss and the possible spread of any cancer to my bones. (from what he said in his e-mail)

I was asking for types of treatments, because I want to research the possibilities and check for side effects. I'm Just starting to have the side effects of two years of Lupron weaken.  I'm trying to learn what side effects I might be facing with these treatments that are being suggested. 

The links were / are very helpful.  Especially the video.  I have saved those links and will talk about the low dose estrogen patches with my doctors. At some point that was mentioned to me as a possible treatment if we needed to have bone density treatment. 

Thanks again for your input 

Peace and God Bless

Will

Will

You are doing all the recommended exercises to minimize bone loss from hormone therapy (and age). Good for you! I gather you are also on a proper diet (Ca, vit D).

Now with respect to your bone density results. They are not alarming IMHO but warrant attention. What to do?

To give some perspective, my personal experience is as follows. I had a DXA (aka DEXA) scan prior to starting hormone therapy. Much to my surprise, I found out that I had osteoporosis in my spine and osteopenia in my hips. Because of the 18 months of Lupron that was in my immediate future, my GP and I agreed that intervention would be advisable. My spouse had an extensive osteoporotic history and I knew about many of the difficulties and side effects associated with taking  bisphosphonates orally. She had been on Fosamax and then Actonel for over a decade. Her stomach suffered, which seems to be a common side effect, but her bone density didn't change much over this time period, which was good. And, most importantly, she didn't break any bones, which may, or may not, be due to the bisphoshonates she took all this time.

I had read that Reclast (another bisphosphonate) can be infused on a once a year basis and my doctor (GP) agreed that that would be a good approach. Reclast is available as a generic (zoledronic acid), at least in the USA, and the cost to me was less than $100. The infusion was done in the doctor's office and took about 2 hours. I took it easy for a day, but experienced no side effects.

A year later (and full blast into the Lupron) another DXA test showed that my bone density had stabilized (hips and spine). I had also joined an exercise group that focussed on bone health (Bone Builders), which may have contributed to the stabilization. My GP recommended another Reclast/zoledronic acid infusion, but I declined, hoping that my exercise program would suffice. I will know in a month or so whether that was correct or not, since I am due for another DXA bone measurement.

Conclusions:

You are doing the right things with respect to bone health, as far as I can tell. Continue!

Your femurs are on the weak side and breaking one will require surgery etc. Not a good prospect.

Consider one of the available drugs to prevent further bone loss in your femurs, at least while on hormone therapy.

The bisphosphonates are a possibilty but there are chemically different drugs as well (Forteo, calcitonin). Your GP (or internist) should help you choose, if you want to go that way.

Will Doran

Thank You

Old Salt,

Thank you for your help and encouragement.  I feel better hearing of what you have done.  I must admit I was sort of in a panic when I got the test results from my doctor.  I had read about the stomach problems from some of these medications, and the possible jaw problems.  I am, and have been for over two years (prior to my prostatectomy) taking Vit D, Calcium , Magnesium and have now added Boron that is in a joint  suppliment.  This is all at the recomendation of my Doctors and Oncologists.  They had me started on this before I even had the prostatectomy, in preparation for the follow up HT and Radiation.  After being on Lupron for two full years, I am now off of that treatment.  If my PSA remains at undetectable, I will stay off of ADT,   However if my PSA comes up to levels that are not acceptable, We are prepared to do an Orchiectomy.  That will also need to have  bone density treatments taken into consideration.  All of my doctors have consulted, and have talked to me about all of this and I am  prepared for the surgery, if needed.  My biggest concern about the bone density treatments is the side effects.  I'm just starting to see some relief from some of the side effects of the Lupron.  However, I've only been off of that for 1 month.  I know that the Lupron will "hang on" for at least 4 months and probably up to a year.  But there are days, now and then, that I can see things changing for the better, as far as my "quality of life".  So, I guess I'm just concerned that I will be sending myself backwards as far as how I feel.  I continue to be hopeful, as do my doctors, that we are ahead of "the Beast", for now, and I can remain off of ADT of any type. 

Thanks again for sharing your situation.  As I said, It makes me feel better to hear your suggestions. 

Peace and God Bless

Will

VascodaGama

Will Doran said:

Thank You

Old Salt,

Thank you for your help and encouragement.  I feel better hearing of what you have done.  I must admit I was sort of in a panic when I got the test results from my doctor.  I had read about the stomach problems from some of these medications, and the possible jaw problems.  I am, and have been for over two years (prior to my prostatectomy) taking Vit D, Calcium , Magnesium and have now added Boron that is in a joint  suppliment.  This is all at the recomendation of my Doctors and Oncologists.  They had me started on this before I even had the prostatectomy, in preparation for the follow up HT and Radiation.  After being on Lupron for two full years, I am now off of that treatment.  If my PSA remains at undetectable, I will stay off of ADT,   However if my PSA comes up to levels that are not acceptable, We are prepared to do an Orchiectomy.  That will also need to have  bone density treatments taken into consideration.  All of my doctors have consulted, and have talked to me about all of this and I am  prepared for the surgery, if needed.  My biggest concern about the bone density treatments is the side effects.  I'm just starting to see some relief from some of the side effects of the Lupron.  However, I've only been off of that for 1 month.  I know that the Lupron will "hang on" for at least 4 months and probably up to a year.  But there are days, now and then, that I can see things changing for the better, as far as my "quality of life".  So, I guess I'm just concerned that I will be sending myself backwards as far as how I feel.  I continue to be hopeful, as do my doctors, that we are ahead of "the Beast", for now, and I can remain off of ADT of any type. 

Thanks again for sharing your situation.  As I said, It makes me feel better to hear your suggestions. 

Peace and God Bless

Will

Thanks you Old Salt and Will Doran for sharing

Thanks you Old Salt and Will for sharing your knowledge and experiences in regards to bone health.
Both of you give the best guidance to care about the most problematic side effect one may get from hormonal treatments.

Interestingly my wife has suffered with osteoporosis for quite many years since hers 40^th. Fifteen years ago she was found to be at high risk for breaking bones with bone loss close to 33% (?), which made her start taking Fosamax. She acted on the matter since then with diet improvements and constant physical programs (yoga, walking, dancing, etc, 4 days a week) and together with the bisphosphonate managed to keep “a float” (with some improvements) her bone density but recently she tested worse for the Femur and the neck of Femur. Her T-scores in 2011 were Lumbar -3.0, Femur -1.2 and F-neck -0.4; In 2015 these become L-3.3, F-2.6 and nF-2.3.

We have been acting on the problem but couldn’t find any explanation. Her diet is vegetarian based and incorporates milk products and that has increased the cholesterol considerably. Previous values of 257 mg/dL were lowered with milk containing plant sterols to a level of 200 mg/dL, but this may be behind the worsening of the bone health. Still worse is that she had tooth problems for many years, but in the past six months she complained that some teeth are moving and falling. An x-ray reveled jaw bone loss. We are suspicious of the many years taking Fosamax. Her doctor has no proper explanation, however she commented that without Fosamax my wife may have been in a worse situation.

From HT (ADT) survivor’s reports, it seems that the problem with bone loss is more evident when one is on continuous treatment over 2.5 years. This data is from guys not taking bisphosphonates. On the other hand, guys on intermittent HT (IADT) fared better. I recall a famous PCa patient that used only ADT as his prime treatment during a 14 years period, involving three blockades (Lupron, Casodex and Fisnateride plus Celebrex), on an intermittent modality. He never took bisphosphonates but he did engage in gym programs similar to Will’s above program.

Regarding the situation of Will Doran, I am not so sure if orchiectomy is better to control PCa in a patient suffering bone loss. Orchiectomy will drive to hypogonadism that is susceptive directly of bone deterioration. In fact many guys go to TRT (testosterone-replacement) to improve the hypogonadism status. I also read of some guys taking estrogen patches to substitute testosterone in their drive to gain strength, avoiding complications with the cancer (lesser feeding of PCa)

A note on my experience with Leuprolide (Eligrad, Lupron, etc); my shots were of 6-month doses which efficacy were certified via periodical PSA and Testosterone tests. I took three shots covering a period of 18 months. The loss of effect of the last shot was verified through a Testosterone test three months post the end of effectiveness of the drug. Laying that in a time frame; the shot was administered in November 2011 (T=32), its effectiveness lasted 6-months till May 2012 (T=<1) and the increase of T=11 in August 2012.
The above confirms the end of the effectiveness of the Leuprolide, but the end of the hypogonadism symptoms started earlier. I felt lesser symptoms just two month from the end of the drug’s effectiveness in July 2012. You can read my experience in this link;

http://csn.cancer.org/node/244938

Plant Sterols have some “affairs” in the treatment of prostate problems. You may want to read details in this link;

https://heartuk.org.uk/cholesterol-and-diet/healthy-eating/plant-sterols-and-stanols

Thanks for both of your reports.

VGama

Will Doran

Thanks for sharing

VG

My doctors and I are hoping that after the next three months, My PSA will remain at <0.010.  I have been on Lupron for two years and suffered every possible side effect, except for weight gain. I think that is from my level of activity and my doctors say they are puzzled by that part of my case.   The most bothering has been the loss of strength and the aches in my leg muscles and bones.  That is starting to subside, now that I have been off the Lupron for 1 month.  However, I have been told that the effects will linger up to 12 months after the last shot.  The hopes are that my PSA will stay at "0" and we won't have to do the Orchiectomy. In fact they think my Testosterone may stay very low, because I was on Lupron for 2 years.   We have already talked about  the bone density situation as being the same whether on Lupron or having the Orchiectomy.  We have also talked about intermitnet Lupron treatments and we may do that.  I will have PSA, Testosterone, Liver Function and Kidney Function tests done in May (3 months post Lupron) to assess where we are, before we make the next decision.  If the numbers are OK, then we will wait and go through all the tests again after 6 months post Lupron.  And so on.  Since I am listed as "nearly having Osterposis"  My GP wants to try and stay ahead of more bone density loss.  However he wrote back to me and said he has "No Experience" dealing with cancer patients who have been through all the radiation and chemo (Lupron) I have had.  I admire his honesty and that he isn't afraid to say that.  Of course he is a former student of mine, so we have a rather close relationship.   So, we are going back through the Chemo Oncology Department for advice.  We just got that started today (3/15/16).  Chemo Oncology will be in contact tomorrow after my chemo doctor gets back and goes over my test results.  From my conversation with the nurse at chemo, they can and might suggest an infusion that lasts for 1 year.  Old Salt mentioned that treatment. 

VG, Thanks for your input. It's much appreciated.

So, the battle goes on.

Peace and God Bless

Will

Will Doran

Bone Density Treatments Update

VG & Old Salt

Thank you for your input and help.  My GP and My Chemo Oncologist are in contact once a week.  I was called by my Oncologist this AM, and She is putting me on Prolia.  Two shots per year.  There is the possibility of Jaw problems, But since I only have 4 very tiny fillings in four teeth that were developing as I was having Radiation Treatments when I was in 5th grade, They don't think I should have much of a problem.  Chemo Oncology has been using Prolia on Men in my / our situation and in Women with Breast Cancer, with good results.  They are actually seeing bone density increase  while being on this treatment.  They use the shots instead of the pills to prevent stomach probems.  My doctor said to go back on my Calcium Suppliments up to two pills per day.  I was on those before, but was taken off of it because they thought my blood calcium was getting to high.  The Oncologist that told me that is no longer with Cancer Care Partnership.  Now, they say the levels of Blood Calcium can be higher than first thought, and mine were / are fine,  so I should go back to what I was taking a year ago.  She also talked ot me about my diet and exercise and said I'm doing what I should be doing, and to keep at all of that as I am doing now. 

So, After worrying about this since Friday, in four days time I have been set up for my treatments.  I am so thankful to have doctors who work this fast and work out these things together. And, I'm so thankful to have this site to talk to others and get suggestions and support. 

Peace and God Bless

Will

Rakendra

side effects

If any of the following side effects occur while taking denosumab, check with your doctor or nurse immediately:

More common

• Back pain
• blistering, crusting, irritation, itching, or reddening of the skin
• bloody or cloudy urine
• cracked, dry, or scaly skin
• difficult, burning, or painful urination
• frequent urge to urinate
• muscle or bone pain
• pain in the arms or legs
• rash
• skin rash, encrusted, scaly, and oozing
• swelling

Less common

• Abdominal or stomach cramps
• arm or jaw pain
• bloating or swelling of the face, arms, hands, lower legs, or feet
• body aches or pain
• chest pain or discomfort
• chest tightness or heaviness
• confusion
• congestion
• convulsions
• cough
• difficulty with breathing
• difficulty with moving
• dryness or soreness of the throat
• ear congestion
• fast or irregular heartbeat
• fever or chills
• headache
• hoarseness
• joint pain
• loss of voice
• muscle cramps in the hands, arms, feet, legs, or face
• muscle stiffness
• numbness and tingling around the mouth, fingertips, hands, or feet
• pain in the lower back, bottom, or hips
• pain in the upper leg
• painful blisters on the trunk of the body
• pale skin
• rapid weight gain
• runny or stuffy nose
• sneezing
• swollen joints
• tender, swollen glands in the neck
• tremor
• trouble swallowing
• troubled breathing with exertion
• unusual bleeding or bruising
• unusual tiredness or weakness
• unusual weight gain or loss
• voice changes

Rare

• Abdominal or stomach discomfort
• blood in the stool
• change in bowel habits
• clear or bloody discharge from the nipple
• constipation
• darkened urine
• difficulty with swallowing or eating
• dimpling of the breast skin
• indigestion
• inverted nipple
• itching, pain, redness, swelling, tenderness, or warmth on the skin
• loss of appetite
• lower back or side pain
• lump in the breast or under the arm
• lump or swelling in the abdomen or stomach
• nausea
• pains in the stomach, side, or abdomen, possibly radiating to the back
• persistent crusting or scaling of the nipple
• raised, firm, and bright red patches of the skin on the arm or leg
• redness or swelling of the breast
• sore on the skin of the breast that does not heal
• unexplained weight loss
• vomiting
• yellow eyes or skin

Incidence not known

• Heavy feeling in the jaw
• loose teeth
• pain, swelling, or numbness in the mouth or jaw

Some denosumab side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. 

love, swami rakendra

Old Salt

Rakendra said:

side effects

If any of the following side effects occur while taking denosumab, check with your doctor or nurse immediately:

More common

• Back pain
• blistering, crusting, irritation, itching, or reddening of the skin
• bloody or cloudy urine
• cracked, dry, or scaly skin
• difficult, burning, or painful urination
• frequent urge to urinate
• muscle or bone pain
• pain in the arms or legs
• rash
• skin rash, encrusted, scaly, and oozing
• swelling

Less common

• Abdominal or stomach cramps
• arm or jaw pain
• bloating or swelling of the face, arms, hands, lower legs, or feet
• body aches or pain
• chest pain or discomfort
• chest tightness or heaviness
• confusion
• congestion
• convulsions
• cough
• difficulty with breathing
• difficulty with moving
• dryness or soreness of the throat
• ear congestion
• fast or irregular heartbeat
• fever or chills
• headache
• hoarseness
• joint pain
• loss of voice
• muscle cramps in the hands, arms, feet, legs, or face
• muscle stiffness
• numbness and tingling around the mouth, fingertips, hands, or feet
• pain in the lower back, bottom, or hips
• pain in the upper leg
• painful blisters on the trunk of the body
• pale skin
• rapid weight gain
• runny or stuffy nose
• sneezing
• swollen joints
• tender, swollen glands in the neck
• tremor
• trouble swallowing
• troubled breathing with exertion
• unusual bleeding or bruising
• unusual tiredness or weakness
• unusual weight gain or loss
• voice changes

Rare

• Abdominal or stomach discomfort
• blood in the stool
• change in bowel habits
• clear or bloody discharge from the nipple
• constipation
• darkened urine
• difficulty with swallowing or eating
• dimpling of the breast skin
• indigestion
• inverted nipple
• itching, pain, redness, swelling, tenderness, or warmth on the skin
• loss of appetite
• lower back or side pain
• lump in the breast or under the arm
• lump or swelling in the abdomen or stomach
• nausea
• pains in the stomach, side, or abdomen, possibly radiating to the back
• persistent crusting or scaling of the nipple
• raised, firm, and bright red patches of the skin on the arm or leg
• redness or swelling of the breast
• sore on the skin of the breast that does not heal
• unexplained weight loss
• vomiting
• yellow eyes or skin

Incidence not known

• Heavy feeling in the jaw
• loose teeth
• pain, swelling, or numbness in the mouth or jaw

Some denosumab side effects may not need any medical attention. As your body gets used to the medicine these side effects may disappear. 

love, swami rakendra

To prevent confusion

Denosumab is the 'official' name for Prolia and Xgeva (both Amgen products).

Hence, to find 'scientific' studies in the medical literature (PubMed etc), use denosumab as the key word.

The mechanism of action is different from that of the bisphosphonates.

Max Former Hodgkins Stage 3

Old Salt said:

To prevent confusion

Denosumab is the 'official' name for Prolia and Xgeva (both Amgen products).

Hence, to find 'scientific' studies in the medical literature (PubMed etc), use denosumab as the key word.

The mechanism of action is different from that of the bisphosphonates.

Hopefully of assistance

 

This site has excellent, Medical Center drug information (mostly linked to The Cleveland Clinic) on all chemotherapy and most HT drugs FDA approved for use in the US.  It is a public service initiative of Scott Hamilton, Olympic Ice skating champion.

http://chemocare.com/chemotherapy/drug-info/Xgeva.aspx

https://scottcares.org/

 

max

Will Doran

Thanks to all

To all,

Thank You.  I was on the Mayo Clinic site and  a couple others, including Cleveland Clinic, and saw all of the possible side effects.  And, I must admit, it scares the hell out of me.  However I guess under the circumstances, I have to try this with the blessings of all of my doctors, with the hope that this prevents further bone density loss and the possibility that if the cancer comes back that it could move into my bones.  As I may have said, I'm just starting to feel a little relief from the mess of side effects I've dealt with from the Lupron.  And, now here we go with some other possible side effects. 

I guess I'll take it one day at a time, and see how it goes.  My Oncologist has already talked to me about some of these side effects. 

Hoping for the best.Peace and God Bless to all.

Sincerely,

Will

Will Doran

Treatment Update

Hello to All,

FYI:

I had my Prolia (Denosumad) Infusion on Mar. 18th.  So far, The side effects I've run into have been joint, bone and muscle aches in my legs and arms.  This isn't all the time, it comes and goes.  My Oncologist advised me that this could  / might happen.  I also notice that when I'm exercising my muscles in my legs (especially when on my spinner bike) get a very warm (warmer thant I was used to) feeling in my legs.  The same for my arms as I'm doing weight lifting and using the weight machines at the gym.  I have noticed a little bit of weigh loss on the last 4 weeks.  Not much, but a little.  So, If I have to deal with this little bit of discomfort to help my bone situation, I guess it's woth it.  My doctors said we will see how I react to this substance and decide whether I will need to be on this for a long period or not.  They tell me that as your body adjusts to this drug, the side effects should subside a bit.

 

Take Care

Peace and God Bless

Will

VascodaGama

Lack of Calcium may prejudice the work of Prolia

Will,

Thanks for the details of your treatment. This thread became a good source to bone density "troubles" and its care, in particular to us cancer patients and in ADT therapies.

I would think that Prolia may be behind your symptoms but it could also be a cause of neuromuscular hypocalcemia or hypercalcemia in reaction with the drug. Lack of calcium provides the symptoms you describe.
I recall a patient reporting about his hypocalcemia condition when taking Xgeva and his painful muscle cramps and muscle spasms experiences. Proper levels of calcium are essential for the best action/outcome of denosumab. Some guys may experience the above due to body’s mal absorption of calcium and/or vitamin D from food or even when taking supplements. I think that patients on Prolia/Xgeva or bisphosphanates should have their calcium, D3 and B12 vitamins levels checked together with the periodical PSA tests.
What our bones need are estrogen, calcium, magnesium, Vitamin D3 and regular physical stress.

I would appreciate a note from Old Salt regarding the mechanism of action of denosumab in comparison with that of traditional bisphosphonates used in cancer patients, such as the Alendronic acid/alendronate (Fosamax), Zoledronic acid (Zometa) and Ibandronic acid (Bonviva). I thought that all these drugs work by interfering with RANKL to avoid unbalanced bone remodeling. According to research papers on bisphosphanates, these act to prevent too much resorption (the breakdown phase of normal bone) done by osteoclast cells. I think that these drugs do not help directly osteoblast cells to make bone. They are taken equally as a preventive measure.
As far as I know, Prolia and Xgeva got different names for the same substance (denosumab) because of the way they got approved by FDA. Prolia is for bone loss and Xgeva for metastatic cancer.

Best,

VG

 

Will Doran

Web Site about Prolia

VG,

I found this web Site to be helpful as I was making the decisions about going on Prolia.  This site helped put my mind at ease.  I think you suggested checking the generic name for this substance (Denosumab).  Which I did and this site came up. 

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/denosumab

No matter what treatments we seem to be facing there are always tons of side effects. As you said, Prolia is the name given to the treatment that is given for bone density, and Xgeva is the treatment given to people with Bone Mets.  When it was suggested by my Oncologist that I start these treatments.  I paniced.  I had read and understood that this was given to those who were dealing Bone Mets.  My doctor told me, right out, that I wasn't dealing with Bone Mets and I would be on the once every 6 month treatment that is for those who are dealing with bone density issues from Radiation and Hormone Treatments.  She also told me if I had Bone Mets I'd need to have an infusion once a month, and the first three treatments would be given at two week intervals and then go to once a month.  My Bone Density scan showed bone density gains in all of my bones except my femurs (where the radiation would have hit the strongest).  So, all three of my doctors were in favor on me starting the treatments.  At this point, my good days seem to be increasing, but when I have a bad day (as Sunday was) it's really bad.  Bone and Muscle pain and aches gets pretty bad at times.  These are the most common side effects as is stated in this article.  I had questiosn all of these side effects through my Chemo Oncologist.  She assured me that the side effects that are farther down on the list are very rare.  My GP also talked to me about these side effects, as well, and is telling me the same as my Oncologist.  My Urologist / Surgeon had one of his nurses call me back and she also relayed the same information to me.  As time is going along (I've been on the Prolia for 3 weeks at this point), the bone and muscle aches and pain are getting milder.  My doctors said this should be the case, and so far it is.  My doctors also made sure that my vitamins and suppliments and other medications (Aleve and Tylonol) would not cause any adverse interactions.  I am also back to taking Calcium Suppliments and Vit. D3, to counter act the possibility of developing low blood calcium (which can happen when one is on Prolia).  I have found that hard exercise also helps relieve some of the muscle aches.  Doing my Spinner Bike every day fro 80 - 100 minutes plus doing leg extensions using resistance bands and making those legs muscles really work hard helps.  I also continue to do all of the PT exercise that I was doign for the side effects of the Lupron I was on.

You ask about the way the Denosomab works.  This is talked about in the web site I have listed above. It talks about the breakdown of bone and the rebuild and the interference with RANKL.

If Denosmab does the job, I guess I can accept having a bad day now and then. 

Peace and God Bless to all

Will

 

Old Salt

VascodaGama said:

Lack of Calcium may prejudice the work of Prolia

Will,

Thanks for the details of your treatment. This thread became a good source to bone density "troubles" and its care, in particular to us cancer patients and in ADT therapies.

I would think that Prolia may be behind your symptoms but it could also be a cause of neuromuscular hypocalcemia or hypercalcemia in reaction with the drug. Lack of calcium provides the symptoms you describe.
I recall a patient reporting about his hypocalcemia condition when taking Xgeva and his painful muscle cramps and muscle spasms experiences. Proper levels of calcium are essential for the best action/outcome of denosumab. Some guys may experience the above due to body’s mal absorption of calcium and/or vitamin D from food or even when taking supplements. I think that patients on Prolia/Xgeva or bisphosphanates should have their calcium, D3 and B12 vitamins levels checked together with the periodical PSA tests.
What our bones need are estrogen, calcium, magnesium, Vitamin D3 and regular physical stress.

I would appreciate a note from Old Salt regarding the mechanism of action of denosumab in comparison with that of traditional bisphosphonates used in cancer patients, such as the Alendronic acid/alendronate (Fosamax), Zoledronic acid (Zometa) and Ibandronic acid (Bonviva). I thought that all these drugs work by interfering with RANKL to avoid unbalanced bone remodeling. According to research papers on bisphosphanates, these act to prevent too much resorption (the breakdown phase of normal bone) done by osteoclast cells. I think that these drugs do not help directly osteoblast cells to make bone. They are taken equally as a preventive measure.
As far as I know, Prolia and Xgeva got different names for the same substance (denosumab) because of the way they got approved by FDA. Prolia is for bone loss and Xgeva for metastatic cancer.

Best,

VG

 

Mechanism of action

Both the bisphosphonates and denosumab (Prolia) inihibit osteoclast activity. In that sense, the mechanism of action is the same, but on a more detailed level, the mechanism of how these compounds inhibit osteoclasts is different.

Prolia is a monoclonal antibody that binds to RANKL, a transmembrane or soluble protein essential for the formation, function and survival of osteoclasts, the cells responsible for bone resorption. Prolia prevents RANKL from activating its receptor, RANK, on the surface of osteoclasts and their precursors. Prevention of the RANKL/RANK interaction inhibits osteoclast formation, function and survival, thereby decreasing bone resorption and increasing bone mass and strength in both cortical and trabecular bone.

The bisphosphonates bind to osteoclasts in a more general way based on their structural similarity to hydroxyapatite. When osteoclasts begin to resorb bone that is impregnated with bisphosphonate, the bisphosphonate released during resorption impairs the ability of the osteoclasts to form the ruffled border, to adhere to the bony surface, and to produce the protons necessary for continued bone resorption. Bisphosphonates also reduce osteoclast activity by decreasing osteoclast progenitor development and recruitment and by promoting osteoclast apoptosis.

 

PS: I copied most of the above from reputable biomedical sources.

 

VascodaGama

Wonderful information

Thanks you Old Salt and Will for the information.
Most probable the side effects also differ depending on each substance. I wonder if EU national health systems would cover the cost of the denosumab. I know they pay for the bisphosphanates.

Best wishes for Will's improvements.

VG