Starting xgeva next month: Has anybody... - Advanced Prostate...

Advanced Prostate Cancer

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Starting xgeva next month

Muffin2019 profile image
44 Replies

Has anybody had a reaction to xgeva, starting next month, taking prednisone with the abritone . Now castration resistant moving on to the more expensive and stronger drugs. I also read in trials that xgeva kills cancer cells by red flagging the cells so the immune system can kill them. Dr wants to do monthly blood work while on abritone , how long does this last , do you ever go back to three month blood work. Anybody talking it, share if you can.

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Muffin2019
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44 Replies
Tall_Allen profile image
Tall_Allen

Xgeva does not kill cancer cells. Two major RCTs proved that Zometa does not slow progression. However, an RCT showed that the combination of Zometa and Celebrex in men with newly diagnosed metastic PC did increase survival by 22%.

Good idea to check bloodwork more frequently in the beginning. I'm sure he will do it less often when it proves to be stable.

Muffin2019 profile image
Muffin2019 in reply to Tall_Allen

Does not mean it killed the cancer, in the article says it red flags the cells in the bone and your immune system kills them, the oncologist also said it is anti tumor side effect. I thought he will adjust the blood work as time goes by, just glad the abritone has no serious side effects on me so far.

Tall_Allen profile image
Tall_Allen in reply to Muffin2019

It was disproved that there is any survival benefit, with or without the cooperation of the immune system.

Muffin2019 profile image
Muffin2019 in reply to Tall_Allen

That to me makes no sense to me, without the immune system we die, if the immune system attacks the cancer cells and destroys them that to me extends your life.

Tall_Allen profile image
Tall_Allen in reply to Muffin2019

Re-read what I wrote. What I said was that it has been proven that Zometa alone has no effect. It doesn't matter if the immune system supports it or not - it has no effect.

Muffin2019 profile image
Muffin2019 in reply to Tall_Allen

Better look up, not taking zometa, that is by iv and a different compound than xgeva , one in a monocional antibody the other zometa is an acid base. Read the link I put in magnus's reply. The oncologist said it has anti cancer attributes in study's so it is a side benefit, study fairly new that was my impression.

Tall_Allen profile image
Tall_Allen in reply to Muffin2019

Xgeva is a RNKL inhibitor. RNKL is the enzyme responsible for osteoclast formation. Zometa is a direct osteoclast inhibitor, as are other bisphosphonates. So they both strengthen bones by inhibiting osteoclasts, albeit from different routes. It is possible that only Zometa+Celebrex increases survival, but my guess is that Xgeva+Celebrex does too. Zometa has been shown in 2 major RCTs that it does not improve survival when used as a monotherapy.

You may have misunderstood your oncologist. There are no studies, old or new, that prove that Xgeva as a monotherapy fights cancer. The link you provided says nothing of the kind.

Muffin2019 profile image
Muffin2019 in reply to Tall_Allen

I will rest, I am not taking zometa, I will ask him to read what I read and go from there, thanks for the input.

Magnus1964 profile image
Magnus1964

I have been on xgeva four years, no side effects. Xgeva does not kill cancer cells. It is used to strengthen bones making it difficult for cancer to spread to the bones.

Muffin2019 profile image
Muffin2019 in reply to Magnus1964

I will check the arrticle and let you know where I got it.

Muffin2019 profile image
Muffin2019 in reply to Muffin2019

Check out the article on oncolink.org to see what I read in the article and see 6pur interpretation is. Type in xgeva in the search to get to the article.

Magnus1964 profile image
Magnus1964 in reply to Muffin2019

I stand corrected. When I started xgeva I was only told it would strengthen bones and there would be less chance metastasis.

Muffin2019 profile image
Muffin2019 in reply to Magnus1964

Good news, going to take the article in when I get the first shot at the end of December, how much did it cost the insurance and how much did arbitrone bring down your PSA numbers, I imagine it dropped each month.

Magnus1964 profile image
Magnus1964 in reply to Muffin2019

I am on Medicare so along with my suppliment insurance plan I don't pay anything out of pocket. According to my statements xgeva is quite expensive.

I have not been on abiratorone for many years. I was on it for about 3 1/2 years as part of a drug trial. My PSA went down rapidly as I recall.

Muffin2019 profile image
Muffin2019 in reply to Magnus1964

Will continue to follow you, you have good information in your posts.

GoBucks profile image
GoBucks

Have your Dr. explain what you read. Xgeva does not kill cancer cells. As to your questions, I have received Xgeva shots for 2+ years. No problems. Be sure to have a thorough dental exam. In fact your MO will require a dental clearance letter. Re: bloodwork, it is important to have regular bloodwork while on Abiraterone. That drug can affect your liver. It did mine. I have a monthly CMP for 3 years running. You'd rather find a problem sooner than later.

Muffin2019 profile image
Muffin2019 in reply to GoBucks

He did not say anything on the clearance letter from the dentist but have to watch for that. Monthly blood work is good , I take 10mg of lipitor each night that also affects the liver. Look at that link I posted earlier, it somehow attaches to the cell letting your immune system attack it. That is what I got out of it, he said it was an anticancer as a side effect, just quoting what he said .

GoBucks profile image
GoBucks in reply to Muffin2019

There is no good reason to argue the point about what Xgeva does. Everything you are doing is to fight the cancer. Another reminder: It is important to exercise even if that only means walking. But if you can get to the gym, weight bearing exercises are good for your bones. If you can't go to a gym(or don't want to during Covid), buy some hand weights.

Dropzone profile image
Dropzone

I've been on Xgeva (denosumab) for over a year now. I get joint pain now and then and fatigue, both are said to be a side effect. I had to have a problem tooth extracted in my lower jaw before I started taking it. Apparently Xgeva can cause jaw necroses and my doc was concerned about the inflammation in my jaw caused by my tooth. I was prescribed Xgeva to halt progression of osteoporosis due to ADT treatment but I've also read studies about its positive effect on bone mets.

Muffin2019 profile image
Muffin2019 in reply to Dropzone

That is something to ask about when I go in to get my first shot at the end of the month, good information.

Roscoaus2000 profile image
Roscoaus2000

I have had Xgeva for 4 years with no recognisable side effects. I took it monthly for about 15 months and 3 monthly since. I have had the injection at same time as Zoladex for most of that time. I had it with Cosadex for first year, then with Enzalutamide and Zytiga/prednisolone. However, everyone is different.

Muffin2019 profile image
Muffin2019 in reply to Roscoaus2000

Thank you, good information for me.

john205 profile image
john205

I am in a similar situation, now castrate resistant on Lupron. Just began Xtandi (enzalutamide) as a next generation testosterone blocker. Also beginning Xgeva soon. The Xgeva is to maintain bone strength and to reduce the risk of fractures because of bone loss that occurs with reduced testosterone and because of bone metastasis. It does that in men with castration resistant metastatic prostate cancer involving the bones. While there is no direct effect on the cancer, breaking a hip, for example, is a risk factor for death for anyone, independent of cancer, so preventing that may improve overall survival, but not because of the cancer per se. As far as the blood tests, I will be having PSA anyway to assess the affects of the Xtandi and to monitor for resistance to that to guide the next step. For the Xgeva, it may lower blood calcium and it may cause anemia and low white blood cell counts so those need to be checked. If it does not happen early in the course of Xgeva, testing can probably be spread out less frequently. Also, with Xgeva, make sure you have a dental evaluation. Serious jaw problems, called osteonecrosis, occur in about 3% of people receiving it.

Muffin2019 profile image
Muffin2019 in reply to john205

Good information, I do take calcium citrate supplements but will, ask him if I should take more or just eat more calcium rich foods that sounds like more fun.

john205 profile image
john205 in reply to Muffin2019

Supplements are good but food is better.

Muffin2019 profile image
Muffin2019 in reply to john205

I would agree, I found this year that the body uses the calcium citrate easier than calcium carbonate, the absorbun rate is better and quicker. I also take K2 which is suppose in research help move the calcium to the bones and not the arteries.

Appraiser profile image
Appraiser in reply to Muffin2019

good article last month in life extension magazine regarding K2.....they are now offering it in a high dose, 45 mg I think it was

Muffin2019 profile image
Muffin2019 in reply to Appraiser

Good to know, will CK it out

leo2634 profile image
leo2634

I've been on Zytiga and Xgeva along with Eligard for three years now. I find the Zytiga, Eligard have way more side effects than Xgeva. I'm sure your Doctor will advise you to not have extensive dental work done while on Xgeva but other than that I have zero side effects from it. Leo

Muffin2019 profile image
Muffin2019 in reply to leo2634

I got the eligard instead of lipton last month due to the shortage , still have the small lump. So far so good, no side effects except for the hot flashes that I am used to. Good information, keep fighting and God bless .

V10fanatic profile image
V10fanatic

I just got my 2nd 3 month shot last week. Besides the usual fatigue and joint pains as others have mentioned, I have noticed that it exacerbates my GERD to the point of needing to double up on my Omeprazole.

monte1111 profile image
monte1111

Hard to tell which drug causes which side effect. And everyone reacts differently. I was switched from every month to every 3 months after 3 years. Apparently advisable to switch to 3 months earlier than that. This is when my doctor famously said "so your teeth don't fall out."

carbide profile image
carbide

Hi, I do not know if Xgeva helps kill pc cells.I do know major side effect is ONJ. Xgeva may cause jaw issues, and I got it.

My oncologist said If I need any dental work done before he would prescribe.

I then had 11 teeth extracted took a number of months for healing but six weeks after extraction I started injections of xgeva.

after 3 months my jaws upper and lower upper only extracted bad pain all day long.

I am now Off Xgeva.

If you have good teeth, may not be issue.

Cynthgob profile image
Cynthgob in reply to carbide

First shot of zgeva resulted in eye inflammation. It’s a rare occurrence but one perhaps you need to be aware of as it was a very scary experience. Switched to another drug.

I will only speak to your concern about monthly PSAs. It just tells me that your medical oncologist just wants to stay on top of your situations. There could be several reasons for fluctuating PSAs.

For example, since December 2002, I have had 94 blood draws measuring many things in addition to PSA and T. Of which 9 were weekly; 26 were monthly; 14 were every two months and the balance were quarterly.

In 2015, I was told that I could go to every six months. I declined preferring to know quarterly.......

Stay on top of your metastatic cancer!

Gourd Dancer

Muffin2019 profile image
Muffin2019 in reply to

You have been at this a long time, that is so encouraging to me. The new meds are not causing any serious reaction, the scans showed no real progression, just a slight uptake in one spot, no soft tissue involvement. He is starting xgeva next month, keep taking the vitamin D with a monthly blood draw for awhile, he thinks I am doing great.

Dropzone profile image
Dropzone

I'm one of the few in which Zytiga didn't work. One of the side effects can be high blood pressure although mine didn't rise very much. I did suffer from heart burn from the prednisone though and fatigue from the Zytiga. If cost is an issue for you you could talk to your doctor about taking only 1 pill with a low fat meal instead of 4 on an empty stomach.

Muffin2019 profile image
Muffin2019 in reply to Dropzone

I asked about the one or two with a meal, but he wanted to start high then adjust the dosage, it had not caused any side effects as far as the empty stomach goes and gad not raised the blood pressure. It did lower the PSA from 12.5 to 1 after about 12 weeks and can afford the full dose, still working part time, good health plan and a good retirement plan . I will see what he does in may when I see him again and ask about a smaller dose with food, I will have been on it 6 months by then and hopefully reach the undetectable figure below 1.

Dropzone profile image
Dropzone

Hoping the best for you brother!

Dropzone profile image
Dropzone

Sorry bud, just realized my reply was based on Zytiga but you were asking about Xgeva. For me Xgeva (denosumab) gave me some joint pain and fatigue. Doc prescribed it for me to try to stop my bone mineral loss which scans showed I would soon be at risk for fractures. For me it's an effective but horrible drug. Once you're on it's risky to go off as you can have a bounce back which can cause vertebrae fractures and with long term use you're at risk of jaw necrosis, how's that for a catch 22. I have read that it has anti cancer effects toward bone mets but can't say I've seen evidence of that in me. If I could do it over again I would have started a regimen of vit D3, Magnesium, vit K2 complex (mk4 & mk7), potassium and boron as soon as I started Lupron with the hopes of avoiding bone loss.

Muffin2019 profile image
Muffin2019 in reply to Dropzone

I take a high dose of D3 and K2 along with vitamins, centrum silver that had the trace minerals, also curcumin and garlic supplement. My family history shows oestroposis and thinning of the bones, I try to walk 13 miles a week . My scan snowed some degeneration in my knees and wrists which could be arthritis or in my part time job I am on my feet for six hours twice a week. I also use my hands and wrists on the job.

Dropzone profile image
Dropzone in reply to Muffin2019

Add magnesium and boron, they all work in synergy. Potassium will help prevent bone loss. I wouldn't supplement calcium, unless your level is low, as too much free calcium in the blood can cause cardiovascular issues.

Muffin2019 profile image
Muffin2019

My calcium is normal with the additional calcium and the oncologist does not want me to stop, says that is why I have faired so well due to the calcium intake. Last few tests monthly had been normal, do not drink milk, like cheese but not every day. I have problems with milk due to a lactose intolerance when too much dairy us consumed in a day.

Dropzone profile image
Dropzone

It's recommended to take a 2:1 ratio of calcium to magnesium.

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