Wife of survivor

[502Nesbit]

My husband was on Xtandi for six months. He all of a sudden developed dropped head syndrome. Has anyone experienced muscle weakness in their neck? Thank you.

[Kaliber]

hi …..

I’ve been on lupron - xtandi for six and a quarter years , and when I’m sitting …sometimes …. Im inclined to drop my head on my chest . I’m very exhausted / tired a lot …. all of the time really, and just letting my head drop on my chest , often slightly napping …just feels right in the moment. I’m in a cancer wheelchair , mets having severely damaged my feet and especially knees so I can’t walk. ADT sapping my strength and contributing to muscle wasting in my legs from weakness and lack of use. To a lesser degree the same thing in my neck ….. Laying my head on my chest , my tired old weak neck getting a break … just feels better sometimes. I do it more and more as time passes.

These from Google :

Yes, Xtandi (enzalutamide) can cause muscle weakness and pain, which can lead to muscle wasting, as it is a known side effect of the ADT treatment :

Androgen deprivation therapy (ADT), which Xtandi is a part of, can lead to loss of muscle substance and gain of fat (sarcopenic obesity).

IMHO ….As with all things like this , checking with your palliative care team is key to helping making things much better for hubby.

Also IMHO, of all the possible SE s from Lupron-Xtandi ( and as a superresponder myself , I have most all of the SEs ) , hubby dropping his head on his chest isn’t too bad of a SE, and checking with your medical palliative team, there are neck braces available to help , if other remedies ( neck exercises come to mind ) don’t work.

All this just from personal experience and strictly IMHO, I’m not a doctor and don’t even play one on TV lol . Your care team should be the last word in his care. Say hello to hubby , and I’ll say your husband is “ very lucky “ to have you in here as his caregiver , asking the questions, ….going to bat for him. A big Ehug out to both of you.

❤️❤️❤️

[502Nesbit in reply to Kaliber]

Thank you all for your care and compassion. My husband has had the best team of doctors since having his prostate removed in 2018. However, things have been going downhill ever since in one way or another. I know God has kept him here for His purpose. He's a Vietnam veteran. Strong and doesn't complain. Need I say more? Thanks for the hugs and kind words and advice. You all are great!!!

[Kaliber in reply to 502Nesbit]

🌹🌺🌼🌹

[Cancer2x in reply to 502Nesbit]

From a fellow Vietnam Veteran with Stage 4 Prostate Cancer, Welcome Home to you both! Tell him to medically keep 360* security! My best to you both!

PAX

[502Nesbit in reply to Cancer2x]

Thank you! I'll share your message. Our best to you as well. Hope you're doing well. God bless you!

[502Nesbit in reply to Cancer2x]

Thanks, also, for the advice about 360* security! Best regards!

[Doctorsceptic]

I strongly recommend you get an accurate diagnosis. A neurologist may be the best person to advise.

This is a muscle problem and it has a number of different causes. Whether it is related to enzalutamide is debatable and depends on establishing a diagnosis.

[Ian99]

I have been on Lynparza for 8 months and noticed tightness in my neck after 3-4 months. When walking I can have difficulty keeping my head up. I have worked around this by continuously lifting my head when doing gym exercises - running and weights. I have found that the more I use the neck muscles, the more supple they become.

[j-o-h-n]

Greetings 502Nesbit,

Would you please update his bio.....all info is voluntary. A bio helps him/you and helps us too. Thank you!!!.....Keep posting.

Good Luck, Good Health and Good Humor.

j-o-h-n

My husband was on Xtandi for six months, why has he suddenly developed dropped head syndrome?

From A I <===<<<

ChatGPT said:

I'm sorry to hear about your husband's condition. Dropped Head Syndrome (DHS) is a condition characterized by severe weakness in the neck muscles, leading to difficulty in holding the head upright. While Xtandi (enzalutamide) is a medication used for prostate cancer, it is not commonly associated with DHS. However, there are a few possible explanations for this sudden onset:

1. Muscle Weakness & Neuropathy

Xtandi can cause fatigue, muscle weakness, and neuropathy (nerve damage), which might contribute to DHS if the neck muscles are affected.

Long-term muscle weakness from cancer itself or hormone therapy-induced sarcopenia (muscle loss) could be a factor.

2. Paraneoplastic Syndrome

Some cancers, including prostate cancer, can trigger paraneoplastic neurological syndromes, leading to neuromuscular weakness.

3. Myopathy from Androgen Deprivation Therapy (ADT)

Xtandi works by blocking androgens, which are essential for muscle strength and maintenance. Over time, this can lead to proximal muscle weakness, affecting the neck muscles.

4. Neurological Causes

Conditions like Parkinson’s disease, myasthenia gravis, or motor neuron disease (ALS) can present with dropped head syndrome.

If he has had any recent strokes or other neurological symptoms, further evaluation is necessary.

5. Spinal or Structural Issues

If he has spinal compression, cervical spondylosis, or metastasis to the spine, these could cause neck weakness.

What to Do Next?

Since DHS can affect breathing, swallowing, and overall quality of life, I strongly recommend:

Seeing a neurologist to rule out neuromuscular causes.

Consulting with his oncologist to assess if Xtandi or cancer progression is contributing.

Physical therapy or a neck brace may help improve function and comfort.

[502Nesbit in reply to j-o-h-n]

Thank you so very much for your detailed answer. It all makes sense. He just completed several types of treatments, including six months IVIG infusions. Nothing has worked. His oncologist abruptly took him off of Xtandi and hormone injections even though my research indicated a possibility that the treatment could have been a contributing factor. At any rate, there is nothing they can do nor is there any answer why he has developed DHS. He's been seen by so many doctors. I just wanted to vent. Again, thank you for taking the time to answer. HealthUnlocked has been a blessing! God bless you all.

[j-o-h-n]

You're welcome..... Stay and post with us...... best sight for information and comradery.

Keep on Keeping on.........(update bio if feasible age? location? meds? doctor(s)? treatment center(s)? Psa score? Gleason score? and etc. )

Good Luck, Good Health and Good Humor.

j-o-h-n

[502Nesbit]

Thank you, j-o-h-n. I will update information. We are still blessed!