Xgeva and Diet

[Ewhite99]

I'm new to this site. Just started reading the Stage 4 prostate cancer posts and finding them extremely helpful. Much appreciated! I was diagnosed with Stage 4 in Aug 2016, chemo in Winter of 2016, I get Lupron and Xgeva shots quarterly. PSA was 0.1 after chemo, is now 5. Is anyone else taking Xgeva? Wondering how vital it is for my treatment, the side effects are lousy, joint pain and back pain. Also, how important do you consider diet in your treatment? My oncologist does not give it much consideration but others says it's huge. Finally, my doc is waiting on Zytega since my bone scans and CT scans are clean but I have read that starting early may be beneficial. Is anyone on Zytega who also had Chemo and currently has clean scans? Thanks!

[pjoshea13]

Is diet huge? The topic is certainly a minefield. Men with PCa often make radical changes, with varying degrees of commitment. Dr. Myers got into trouble for a vlog post on diet. Said that the indignant response from some was akin to a dispute about religion.

Myers has treated some in this group. He himself had very serious PCa almost 20 years ago. Has followed the Mediterranean diet - even co-wrote a book on it. Myers is at pains to say that the Med diet is not low-fat. In fact it is 40% fat. Myers has said that his low-fat patients have not done well.

The Med diet has been proven to be heart-healthy. Men with PCa have excess cardiovascular risk.

A low fat diet is necessarily high-carb (unless one eats a lot of meat).

The Ornish diet is the extreme opposite of the Med. It is 10% fat. It improves most lipids but not triglycerides. Elevated triglycerides are stored as fat - particularly visceral fat. One can lose visible weight on the Ornish, yet accumulate fat around the organs. This fat is hormonally active in a bad way for PCa. Elevated triglycerides are also associated with insulin resistance & elevated levels, which should be avoided in PCa, IMO.

Yes, diet is huge, IMO. There are other views, which you will soon hear.

-Patrick

[RonL]

I’m on Zytiga and Xgeva as well as Lupron but I’ve never had chemo. After 6 months on Xgeva I can’t say I’ve noticed any side effects other than fatigue which has plagued me ever since I started on this merry go round. Best of luck to you.

[George79 in reply to RonL]

I echo what Ron says. Same drugs same experience.

[Scruffybut1]

I was on ADT and still am entering year 4. Dxd Nov '14, 40+ bone Mets, pelvic girdle lymphs gone, seminal vesicles corrupted. No visceral spread. PSA 200. Began 8 months Docetaxel Nov 15 last one May 10 2016. PSA 16. 5 months break add Zytiga. Month 1 PpSa 5.2, month 2 3.8. Full scans again no spread beyond pelvic lymphs and all but 1 bone met gone. Now gone. PSA 0.03 for 12 of 15 readings interspersed with 4 X 0.04. Figure chemo hit the bastard hard and Zytiga + prednisolone added to ADT did the rest. Now we wait! In the past 3 months had groin pains believed to be cancer in the lymphs i.e. CA. back there but no lymphs. Shown to be osteoarthritis, bone hips no cartilage. First real pain for 4 years. What is the chance of PCa eating my cartilage without permission?

[Ewhite99 in reply to Scruffybut1]

Thanks for those details, very helpful. If Zytiga + ADT got your PSA down to 0.03 when it was still at 16 after chemo then Zytiga sure sounds like the way for me to go too. I was at 0.1 after chemo but now at 5 about a year later so I'm going to press my doc on why not Zytiga? Thanks!

[Hidden in reply to Scruffybut1]

Have you been taking glucosamin-chondroitin? I do. Supposed to be good for cartilage and joint health.

[Ewhite99 in reply to Hidden]

No, first I've heard of it. I'll look into it. Thanks!

[Scruffybut1]

Only diagnosed a couple of weeks ago, they though cancer had returned to my hips. Adjusting to 'pain' levels and increasing understanding of when either hip likely to think about breaking from me. Once I am settled will certainly look at your advice. Many thanks. No

[AlanMeyer]

I'm far from expert on any of this and I don't know if anyone is. It seems that specialists in prostate cancer have different opinions.

Experts used to think that you get the same benefit from a drug no matter when you start using it. If you start Lupron with a PSA of 10, and get one year from it before the PSA starts to climb, you can get the same benefit by waiting until your PSA gets to 100, at which point you can start Lupron and still get one year before your PSA starts to climb again.

I think, but don't know, that opinions on that are changing. I think a lot of oncologists now believe that cancer is easier to control when it's small. They think you'll get the most benefit from Lupron (or most other anti-cancer drugs) if you use them early, before the cancer becomes bigger and more diverse. If you start Lupron when your PSA is 1.0, you'll get more time from it than if you wait until it's 10, and more still than if you wait until it's 100.

If that second theory is true, then I think it would be just as true of Zytiga as of Lupron. I would think you want to start Zytiga no later than as soon as you're sure that the Lupron has stopped working. In your case, since your PSA is going up, that means now.

But my speculation isn't worth much. What I recommend is that you get a second opinion from a medical oncologist specializing in prostate cancer.

Here is a website that may help you to find specialists who are keeping up with current research:

cancer.gov/research/nci-rol...

Best of luck.

Alan

[Ewhite99 in reply to AlanMeyer]

Thanks for the feedback. Definitely getting a second opinion from another Oncologist.

[RonPavluvcik]

Had my first XGEVA shot last week (11/16) due to new bone mets in hip, spine, feet, thorax, skull and yesterday 11/20 I woke up with severe back pain....could barely move.....struggled to get into car and drive to my nearby GP who gave me a mild pain killer (Tylenol with codeine script)....after a painful day and night yesterday, pain is a bit less at 5 AM today 11/21, but will go back to GP for evaluation....he said it might be a pinched nerve, unrelated to the XGEVA and bone mets.....then seeing my Onc afterwards for his opinion...

[JoeKatyT]

My husband is also Stage 4 and doing Xgeva shots. I know for him, frankly, they really suck. His first one was in the hospital and it was the first time his pain couldn't be controlled. Since then he has had two and they've been better but continued joint and bone pain- hard to tease out what pain is from what though.

[ctarleton]

I'm no doctor so I can only offer my own story as a single data point, and a cohort of one.

At original diagnosis I was very metastatic to many, many bones and lymph nodes and had a PSA of 5,006 at age 65. I had had to go to an ER and into the hospital with morphine level pain to my back at L4-L5, and also at a lower left abdominal lymph node enlarged to the size of a golf ball. I went on some Casodex (bicalutamide) to prevent a testosterone "flare", and then on Lupron Depot - 3 months, "for life". My pain melted away within a couple of months, and my subsequent PSA nadir was 1.0 within less than a year. Resistance to Lupron did not develop until almost 2 years. I also got 29 months in a row of IV Zometa (zoledronic acid) (instead of Xgeva (denosumab)), followed by Zometa every 120 days more recently. In year three I did some Provenge, and at the start of year four, I began Xtandi with a PSA of 95. At the end of year four, I am still on Lupron + Xtandi, and my current PSA is 1.4. I have not had any painful bone mets symptoms since the first few months after original diagnosis.

I feel that in many regards I have been just plain lucky, so far, when it comes to the biology of my disease, and to the relative lack of serious symptoms (apart from the usual ADT side effects). I've never had any adverse effects from Zometa, and I take the precautions as listed in the full prescribing information.

[Ewhite99]

I forgot to mention one more annoying Xgeva side effect. It's called "restless leg" syndrome. Drives me nuts! Hard to to describe it but feel free to Google it. So between the restless leg, joint pain and back pain, I'm not a big fan of Xgeva. I'm going to ask my Oncologist if there are alternative medicines I can try that may have less aggressive side effects. I have a feeling the answer is no but it can't hurt to ask.

[erjlg3 in reply to Ewhite99]

There Is Another Type Of Xgeva. I can't remember the name. It Comes In An Infusion And it is cheaper than xgeva. Elgie Has Done Great On Xgeva. The Hospital Wanted To Switch Him From The Injection To Infusion Due To Price. They Allowed Him To Stay With Xgeva Since He was already on it.

[Dan59 in reply to erjlg3]

Jackie , I think you are referring to zometa.

[erjlg3 in reply to Dan59]

That's It Dan! Thanks For The Hand 😉