Xgeva & Calcium/vitamin D: It’s almost... - Advanced Prostate...

Advanced Prostate Cancer
10,774 members12,924 posts

Xgeva & Calcium/vitamin D

Lagovista2018
Lagovista2018

It’s almost been a year since my husband was diagnosed with this terrible disease (stage 4,Mets to bones) his docs put him on casodex and trelstrar injections plus 6 rounds of chemo and 10 rounds of radiation. So far Everything has been going extremely well back in May his oncologist took him off casodex and now has him on zitiga and now he’s has to go and get Xegeva shots every month to strengthen his bones along with taking calcium and vitamin D. My question is anyone on here on the same regimen? Have you had any side effects from Xgeva? So far my husband gets very fatigued and has headaches and a little joint pain.

24 Replies
oldestnewest

Ask his oncologist about adding Celebrex. It works well with Zometa, so it may work with Xgeva too. Send him this link:

ascopubs.org/doi/full/10.12...

Fatigue is the #1 side effect of Zytiga.

Add k-2 also to d3 .. I remember when you came on line here . Keep loving each other .. Good luck ..

I finished my second Xgeva shot and awaiting my third. I'm 75 on a similar regimen. Stage 4, mets to bone, Zytiga,Prednesone, lupron,Avodart,Lupron,Metformin,SBRT, IMRT to the prostate. I'm fatigued from very hard work, takes a day to recover, sometimes joint pain, but get relief from working in the gym. Keep a good diet and stay active. Many days like today, I don't want to workout but feel refreshed when done. Hope this helps.

Bob

If you don’t mind me asking when were you diagnosed?

I was diagnosed in Nov 2017. Just achieved undetectable June 2019

Congrats! Great to hear :)

20 months on Zytiga, Prednisone, Eligard, Xgeva and recently Provenge infusions. The side effects are many with ADT but seldom are all of them. In time you learn to live with the hot flashes, fatigue, joint aches the trade off is its keeping us alive. Never give up never surrender. Leo

I had 6 1/2 years on Lupron (Eligard), 72 radiations over eleven years, no removal of prostate, and every 6 months I had a shot of Xgeva if my bone scan showed weakness of the bone. I had no side effects from Xgeva, it is used by osteoporosis patients. Once I fell in a parking lot and I broke no bones!

I wonder if you are worried about metastases. Cancer cells are often not completely healthy and can fall apart especially if they go into the blood stream. The white blood cells can clean up these cell parts, so stay healthy. These cells can not multiply without testosterone and androgens present. If they connect with bone they may sink into the bone (over time) but they can not multiply without testosterone. So Eligard lowers your testosterone and therefore your PSA. Some of us think that testosterone is only produced in the testes, but it is also made in other areas, including the adrenal medullas (on top of the kidneys). Eligard stops testosterone in all of these areas. One problem is that Eligard "fools" the pituitary gland at the top of the spine in men to stop making Androgens, but this only works for a short time in some men and the pituitary is no longer fooled. These men become "Androgen Resistant" and other drugs must be used. Get a second opinion if this happens.

I no longer have cancer and I am in remission. The side effects of Eligard get better with time. Watch ALL of his lab tests and keep them in a notebook, so later you can look back and see trends. For example my Vitamin D3 reserve became low and I am using large doses of it build back up to the normal levels now. When you see a trend, ask your doctor! Above everything else remember to just keep truckin'.

Thank you for sharing your story. We just saw my husbands oncologist yesterday and his labs turned out great. His psa is .01 and his alkaline phosphate in his bones which is how his oncologist is tracking the Mets in his bones is stabilized. My husband goes in for us MRI and ct scan in November. Fingers crossed they come back clean. Besides fatigue and a little joint pain he’s doing very very well. We have been incredibly blessed

He is in my prayers.

Hidden
Hidden in reply to JimVanHorn

Most us would give our left ball to "be in remission"! Well done! Glad you found the Vit D3 problem, as a shortage is a common precursor for cancer, and I would suspect 95% of the men in this forum have Vit D3 levels below "cancer fighting levels". This guarantees they will never "be in remission". I think 5000 iu a day is enough, but 10,000 iu seems to work better for some. Best partial source (add pills) is moderate exposure to the sun, as this also has other beneficial mechanisms and by-products.

JimVanHorn
JimVanHorn in reply to Hidden

Thanks for your comments. I was trying to explain that Vit D 3 has a reserve in your body that must be built up when it is almost empty. By me taking 50,000 units twice a week I am building up my reserve. I think 5,000 units is sufficient when your reserve is OK. That would mean your Vit D3 is above 50 on a regular basis. Also, When you take high doses like 50,000 units it effects you brain. For a day or two you have slight mental forgetfulness, like going into the kitchen and opening the microwave door instead of the cloths dryer door and being confused for a couple of seconds. This is because calcium is released in the brain and effects the speed of the neurons.

Hidden
Hidden in reply to JimVanHorn

Jim - since you seem to have achieved what the rest of us have chased for years, you may have another way of killing cancer cells. I have always understood D3 to be a necessary thing to get right (or you will go down hill), but I have never thought of very high doses actually killing cancer cells directly. I have known that D3 kills cancer in a petri dish, but then so does orange juice - so I have always discarded these hundreds of "cures" that litter the Internet and waste so much of our time following up. Now your evidence is that very high doses (50,000 iu - is this via injection - it would be more effective?) actually does hang around long enough to kill cancer in the body. A temporary calcium induced brain fog is not a serious side effect, and it may be controllable with magnesium or potassium adjustments. So please - let us know exactly what your story is so the brave among us can see if the same thing works for others. I am getting more and more suspicious that artificial vitamins are "below par" and harmful (like E and Folic), so your source of D3 is also important. Thanks.

JimVanHorn
JimVanHorn in reply to Hidden

I never meant to infer to I used Vit D3 in high doses to kill cancer cells. I believe that using Lupron injections every 3 months for 6 1/2 years caused my Vit 3 reserve in my body to go to near zero. When I stopped Lupron in April of 2018 my Vit D3 level was 14. It should be near 50 or above. I was using 2000 IU daily while I was on Lupron. I do not claim that my Vit D3 levels effected my cancer recovery. After 6 months of 50,000 units twice a week my Vit D3 level is 27. The reason I take a high dose twice a week instead of 14,000 units daily is that I am trying to build up my reserve of Vit D3. After my reserve is built back up I will reduce the daily dose to 5000 unit daily. Thank you for your concern.

Hidden
Hidden in reply to JimVanHorn

Jim - It is just that you are "in remission" which is an extremely rare bird indeed, so anything you have done that is "different" could be very important information. So you are saying that you cannot see any connection between the 6 months of high dose Vit D3 after you stopped using Lupron, and your continued low PSA numbers? In the usual case, stopping Lupron soon has the PSA on the rise, so even if Vit D3 is high doses can offer a "holiday" off Lupron for a few months, that time can be used to rebuild our rotund bodies and get some muscles back. The only "trick" to do that at the moment is to use estrogen patches and grow boobs.

If some brave reader (who has a measurable steady PSA) would like to test this possibility, a PSA test the day after taking the 50,000 iu high dose Vit D3 should show some increase in the PSA if there was any "kill" taking place. I would do this, but I am in the middle of another experiment.

JimVanHorn
JimVanHorn in reply to Hidden

I understand what you are saying and I would also do anything to survive this disease. In July 2019 my PSA was .06 and my testosterone went up from 14 to 47. My testes have enlarged, I get horny, I have hair on my chest, and occasionally I can have a dry orgasm. My penis is about half the size it was eleven years ago when I started therapy. You understand I am in remission at this time, so I do not know the future. I also have diabetes (180 units of insulin daily), stage 5 kidney disease, and a bad heart (stint on the left side and fibrillation on the right). I am taking 19 medications daily including two blood thinners. My diet is strange, and I have to avoid Vit K foods (Coumadin), no Potassium or Phosphates (kidney), low sodium (kidney), low simple carbohydrates (diabetes), only eat chicken or fish (not more than 3 ounces) and one-half gallon of water daily (kidney). I have sleep apnea and during my cancer therapy (all eleven years) I use a CPAP machine to increase my oxygen levels when I sleep or nap. This gave me more energy when I was tired. I was feeling like an old man until I used Vit B12 sublingual tablets under the tongue. So I watch my B-12 levels. I used Tylenol Generic 650 mg 8 hour timed release to help sleep at night. I used it for hip pain and night sweats. It is timed released so I could sleep all night. I only used Tylenol when I needed it. I go to church (I am a gay man and found a gay church). They prayed for me and gave me a positive friendly place to talk to people. We had three men with prostate cancer, one moved a way and one died. I was the music director for a while. The cancer doctor gave me 2 years to live in 2012 and told me to get my affairs in order. I found a lover and we used crack cocaine for about 3 years. I lost my job at the church and my mother died in 2013. I quit cocaine, moved near the church, and I help others get off of drugs in Narcotics Anonymous. I was a pharmacist. I still go to meetings. I have many friends in these communities. I believe that God cured my cancer and saved me from drug addiction. The church prayed for me all of these years. This month I moved from a condominium into a retirement home in downtown Orlando, so I can get medical attention when I need it. I really do not know why I survived and wish I could tell you, but just remember to just keep truckin'.

Hidden
Hidden in reply to JimVanHorn

Wow man. And I thought I have been in the wars. No place for a scientific reason for a cure in there, and I can see why you cannot be used as a "How to do it" - at least not on a medical playing field. Thank you for being so candid. Hang in there! I will keep looking.

JimVanHorn
JimVanHorn in reply to Hidden

I wish you well.

j-o-h-n
j-o-h-n in reply to JimVanHorn

" I no longer have cancer and I am in remission." <===<<< Oxmoron

Keep on trucking....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/27/2019 5:27 PM DST

I’ve been on xgeva since a bone met was found in 2017 but I’ve been getting quarterly shots after having a good bone density scan in 12/18. I did notice more fatigue when getting monthly shots but not since dropping down to quarterly.

Bob

I was on Xgeva/Lupron/Casodex for 2 years after diagnosis early 2016. I was one of the unlucky ones that developed Osteonecrosis of the jaw as a side effect of the Xgeva. Have since dropped Xgeva and Casodex and added Xtandi. Have taken calcium and Vitamin D ever since diagnosis. Bone mets were undetectable in year 3 bone scan.

This story is exactly my husband ‘s ,with the exception of radiation

Side effects

Fatigue severe

Muscle pains

Some cardiac arrhythmia

Has had to reduce from four per day to three( enzalutamide)

Effexor is primarily antidepressant

But minimises hot flushes very well he takes one per day

He tries to excercise more as the data reads well for longevity

I wish you and your husband the very best

Hang in there

Xx

Hidden
Hidden in reply to Bebby1

Sorry, this reply is going to be a bit of overkill to your post, but it does contain lots of hope and info that will be new to some.

Xtandi (enzalutamide) causes Potassium imbalance problems, which in turn causes "heart arrythmias", raised pulse and high blood pressure. I am repeating experiments I did nearly 2 years ago, starting with 4 capsules a day for 2 weeks, and decline from there down to (perhaps) 1 capsule per week. I am trying to find (again) the optimum levels of Xtandi and Sodium Ascorbate, as the low dose Xtandi has no real side effects. That 2 weeks dropped my PSA from 2.75 to 1.78, so 2-a-day for now. What these experiments show is a combination of Xtandi and Ascorbate means one can effectively control the PSA for a long period without using any radiation or heavy chemo. My cancer is not "dormant" - it grows at about 5% per day when I am not clobbering it.

I have actually had to halt the Xtandi for a few days because I had forgotten how much 4-a-day also trashes the immune system. I got myself a strep throat, tonsillitis, runny gut, and eye infections. I will sit this out, as an anti-biotic will trash my immune system even further. The immediate effect is for the pulse and blood pressure heading down, and my toes have been added to my feet. But not yet steady enough to walk normally without tending to fall over when turning a corner - that effect seems to linger.

In my case, if the potassium levels are anywhere lower than mid-normal, I get PVC's (premature ventricular contractions) which show up as missing heart beats and a minor "flutter" in the chest. I keep taking potassium (450mg) every day until they go away. Warning - I have been juggling my potassium level for years, so feel I can do this safely, but a mistake can be fatal, As I reduce the Xtandi, I will need less potassium.

Sadly, a big (unknown) percentage of "heart problems" are simply a shortage of potassium, especially in warmer climates. One day the heart doctors will find this out before applying knives and sledgehammers.

Thank you so much for taking the time to write

I just showed your reply to my husband

Talk about timing

On the weekend we travelled to a nearby town( 2 hour away)

Met up with a friend who spoke with me as we were leaving stating she had never seen my husband so uptight

Sullen pale etc

When I spoke with him on the way home he told me he had gone back up to four per day ( enzalutamide )

That explains the increased fatigue

Arrhythmia s

Generally unwell

We are in Australia

I read this site and some of the trials and drugs and treatments are totally foreign

Again thank you so much

We have both gained knowledge and will speak up the oncologist re same very soon

Take good care

You may also like...