Unusual side effect

[Kentucky1]

I have recently started Xtandi, Xgeva, and Xofigo within a week of eachother. I am experiencing an unusual issue and am trying to decide if one of the medications might be responsible for it. My left leg is drawing up, contracting with the quad muscles, with a slight draw across the body. All the quad muscles of the left leg stay in contraction all the time. I can physically manipulate the leg to return it to full extension, but it wants to stay in contraction. Upon arising the left leg does not want to extend, or take pressure to stand. It will, but remains unstable. Sleeping is difficult due to the constant contraction. All the quad muscles are extremely tight and the psoas is extremely tender to touch. Any thoughts. Thanks in advance.

[dico]

My husband had some nasty side effects from Xtandi, but nothing like you are describing. He also takes Xegeva. I would make sure that my doctor was aware of the side effects ASAP. If it were my husband I would probably be considering a trip to emergency. Hopefully someone with more knowledge about this will respond shortly.

[tango65]

Xgeva can decrease the calcium levels and cause muscle “irritability”. Do you know your calcium values in blood?

[Kentucky1 in reply to tango65]

last week it was 9.0mg/dl, so low normal

[dico]

My husband's calcium level is 9.1 and he is having no problems like yours. Perhaps one or more of your medications do not play well with MS?

[Muffin2019]

How is your potassium, might be low.

[Kentucky1 in reply to Muffin2019]

It was 4.1 last week, better than when on Zytiga

[London441]

How much do you move?

[Kentucky1 in reply to London441]

That's a big issue with also having MS. I'm no where as active as I should be or have been in the past. Trying to stay active but it's a struggle recently.

[cesces]

Are you sure you have the right cause?

[Kentucky1 in reply to cesces]

Not at all sure, just trying to figure it all out. Very possible it's totally unrelated the medications.

[Rogersw]

The Xtandi information sheet does mention something called restless legs as a side effect

[Mrtroxely]

I had restless legs, which is muscle spasms nor just in legs.Was at night quietly laying in bed trying to go sleep......

Twitchy muscles,......

I was walking lots, and very active, no change.

Every one is different....

Definately try push speak to the cancer nurses or the oncologist.....

Hope it goes ok.

Felt crap on enzalutamide

After 2 weeks of slow build side effects, took 2 weeks to come of and feel loads better.

But we need try things!

[Kentucky1 in reply to Mrtroxely]

This seems to be more than restless leg syndrome. I see my MO tomorrow and hope he has some insight into what's going on.

[katartizo61]

I favor a trace mineral support as well as myo-fascial therapy to the buttock both sides. Works for me

[de-luke]

I use a electric massager like this, helps a lot! Something like this fab-ent.com/benefits-electr...

[Kentucky1 in reply to de-luke]

I've got a heavy duty percussor, which helps a lot. I'm using it twice a day along with 2 sessions on the inversion table.

[lokibear0803]

This will largely echo/summarize the thoughts of several others here, and add maybe 1-2 extras:

Depending on severity, if it were me — I’d start with checking potassium and other electrolytes, meanwhile doing a ton of stretching and foam roller work, and schedule some massage therapy with someone with sports physiology or neuromuscular expertise (as per my wife, who is a CMT/NMT). I’d keep moving; but nothing strenuous until I know what’s going on. And of course check with MO on possible cause from the meds or combo of meds. I have also used a massage gun and get very nice results from it.

All of above is “if this were me”. I’m not a doctor!

[Kentucky1 in reply to lokibear0803]

Just got back from my MAT guy and he was able to loosen things up a bit. Suggests I do some isometric exercises on the area to hopefully wake things up. Next stop is an NMT, my pilates guy knows a good one and I'm trying to see her soon.

[CAMPSOUPS in reply to Kentucky1]

Hope you'll be able to see your Dr. soon.

[lokibear0803 in reply to Kentucky1]

Best of luck with it!

[wagscure259]

Did I understand that you also have multiple sclerosis? If so it seems you might be describing spasticity or abnormal tone. Have you discussed this new finding with your neurologist? Perhaps your MO will discuss with your neurologist to determine if there are any drug interactions( if you take any MS drugs?) My best wishes for the resolution of these motor symptoms

[Kentucky1 in reply to wagscure259]

Yes, I do have MS, upgraded from RRMS to PPMS about the time my cancer was diagnosed. I'm taking 60-80mg a day of baclofen for spasticity. This doesn't feel like normal spasticity, but could definitely have a neurological cause to it. I was "fired" by my neuro last year when I questioned the reason for repeated MRI's. The only approved MS drug for PPMS is Ocrevus and I did not want to take it. She basically said that if I didn't want to actively treat my MS or do yearly MRI's then she had nothing to offer me. We parted ways cordially and both agreed that my focus should be on my prostate cancer. I'm seeing my MO tomorrow and will go from there.

[Seasid]

I would in de future try to introduce new drugs one by one instead of 3 new drugs at ones.

I believe Xtandi is the most important for you. You could half the dose if you believe it could reduce your side effects.

Definitely talk to your MO as soon as possible.

It could be just an electrolyte imbalance. Can you go to you PCP to do some blood tests so you can show the results to your MO?

[Kentucky1 in reply to Seasid]

I had cbc/cmp, magnesium,phosphorous,PSA, testosterone done last week, everything was within limits. Yeah, I would rethink starting all 3 so close together. I'm sort of leaning towards Xgeva being the culprit if it is one of the new meds. I've had 2 falls in 2 days with legs just buckling at the knees, so got to figure something out.

[Seasid in reply to Kentucky1]

You can half the dose of the Xtandi according to the Xtandi internet site. Of course you should find out what is the cause of your problem. Hopefully your MO can help.

[Kentucky1 in reply to Seasid]

Just returned from my MO. He doesn't think any of the meds are responsible for my problem, but was willing to hold off the Xgeva for a couple of months to see if anything changes. He ordered X-rays of left femur and lumbar spine to rule out any trauma from my recent falls. They came back OK. He suggests returning to neurologist to see what she thinks, otherwise stay the course.

[Seasid in reply to Kentucky1]

Could you please fill out your profile information? It could help you to receive appropriate advice from us here. It is a dangerous game ever with your filled out profile. We just simply don't have all the information.

[Kentucky1 in reply to Seasid]

Thought I had entered it, will take a look.

[Seasid in reply to Kentucky1]

Thanks

[MateoBeach]

Calcium! The Xgeva takes up lots of Calcium into the bones. That is what it does in the process of strengthening the bones. It is a good thing and works especially well with Xofigo.Higher dose calcium supplementation is advised, especially in the first months on Xgeva.

Check with your doctor and have calcium levels monitored. But in the meantime I would be taking 2,000 mg of Calcium, along with 1,000 mg Magnesium - these need to be in balance. This will stop the muscle cramps. And probably also a moderate dose of Vitamin D3 such as 1,000 or 2,000 IU per day. Then your doctor can adjust per blood levels.

You are on a very good regimen with those three "X-drugs". Hoping you can correct this problem and stick with it. Yes, as others have said, reducing Xtandi to 800 mg/day seems to be good for many with lower side effects such as severe fatigue. But take care of the muscle cramps and see how you feel.

The arthritis drug celecoxib (Celebrex) also works synergistically with bone strengtheners, primarily Zometa, but no doubt also with Xgeva. Talk with your doctor about adding it.

I'm gooing to call you the Triple-X Man, if I may! Paul

[Kentucky1 in reply to MateoBeach]

Last week calcium was at 9 and magnesium at 1.9. I've been taking 5,000IU of Vitamin D 3 times a week. Don't get a ton of calcium in my diet, so will probably add that. Thanks

[Seasid in reply to Kentucky1]

Can you change doctor?

[MateoBeach in reply to Kentucky1]

Calcium is low at 9 at most labs. Suspect that is the problem.

[Seasid in reply to MateoBeach]

You are spot on.