Keytruda /Xtandi trial : i have been on... - Advanced Prostate...

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Keytruda /Xtandi trial

donovan0932 profile image
14 Replies

i have been on this trial for about 5 months with few side affects up until a week age but now have Peripheral Nephropathy in both feet and hands. .Oncologists had me do an MRI and now say it is not as a result of my bone Mets, or the Drugs .I am not so sure, and wonder if anybody has experience with this condition ?

i am 13 years into this Pca with no symptoms ,that is until i started getting side affects for Zytiga (18 months ),but mainly only a little fatigue .Now on the above combo i have more fatigue that is manageable but the numb feet and hands is not .

This site is great and many knowledgeable contributors unselfishly giving their time .Most valuable to us all

14 Replies
Magnus1964 profile image
Magnus1964

Peripheral neuropathy is a side effect of several Pca drugs. I have neuropathy but not from xtandi. I have a list of drugs I take for neuropathy.

1. Mirapex 1 tablet 0.25mg - prescription

2. Gabapentin 2 capsules (300mg) - prescription

3. Acetyl L-Carnitine 1 capsule 500mg - over the counter

4. Leg Cramps (by Hylands) 2 tablets over the counter

5. Aleve PM 2 220mg - over the counter. Because Aleve can cause liver damage with long term use I have substituted Zyflamend 1 capsule.

6. CBD oil 2 drops

I take each of these drugs at least 20 minutes apart in the early evening. This helps me get a good nights sleep. The effects last all day long.

donovan0932 profile image
donovan0932 in reply to Magnus1964

Thanks for your reply .Are you able to tell me lf the Nuropathy stops after taking of the offending drud stops or is it a permanent condition ? I have been trying large doses of B12 once a week(1000mg) but with only minimal effect .I will start on your suggestions .Thanks again

Magnus1964 profile image
Magnus1964 in reply to donovan0932

Unfortunately it is a permanent condition.

depotdoug profile image
depotdoug in reply to donovan0932

My Super Poly neuropathy Dx’d in 2009ish was from nerve damage do to my Excessive Alcohol drinking for many many years. Like 35 years. Two things help or are helping my Neuropathies feet and hands.

1. Super Vitamin B12 complex twice a day.

2. Exercising twice daily especially moving my feet Stair climbing, Eliptical, treadmill incline.

Yes. I’m continuing on B-complex since restart of my Lupron Depot 12 days ago.

donovan0932 profile image
donovan0932 in reply to depotdoug

Thanks for your reply.I am gong to step up my B12 intake to see how it helps .

depotdoug profile image
depotdoug in reply to donovan0932

I’ve stopped drinking Feb 2011!!! Three months later I had a Sudden Cardiac Arrest. It was primarily due to lack of Potassium and Magnesium and a bunch of other minerals feeding my heart muscles. Yeh I was also on ADHT LUPRON and Casodex bicalutimide from 2008-2012. It to probably had something to due with my SCA . I trying and pushing myself exercising twice daily. Good for the heart bad for the PCa. Will see 12 days on 2nd start of Lupron injection.

tango65 profile image
tango65

Keytruda is associated with peripheral neuropathy:

mdedge.com/neurology/articl...

donovan0932 profile image
donovan0932 in reply to tango65

Thanks for your reply .You would think the oncologists controlling mr trial would be aware of that article you attached?

j-o-h-n profile image
j-o-h-n in reply to tango65

I've had neuropathy for many many years before taking Keytruda for my Lung cancer. It has not increased my neuropathy and I still treat it the same with great success. I know it's hard to generalize when it come to meds and individuals... My meds:

1 Neurontin/Gabapentin 600mg twice a day (morning and evening).

1 Duloxetine (Cymbalta) Hcl Dr Caps 30mg once a day.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/22/2019 4:56 PM DST

donovan0932 profile image
donovan0932 in reply to j-o-h-n

Thanks for your help on the Neuropathy,much appreciated

tango65 profile image
tango65 in reply to j-o-h-n

Only 3% of patients taking Keytruda develop neuromuscular disorders. Some of them could be severe complications.

ncbi.nlm.nih.gov/pubmed/288...

Best of luck friend, keep the Good Humor, much appreciated.

donovan0932 profile image
donovan0932 in reply to tango65

Thanks for your reply.very useful

tango65 profile image
tango65 in reply to donovan0932

I have a a small fiber peripheral neuropathy caused by an autoimmune problem which started with the administration of a cancer vaccine. I take gabapentin and 25 mg of CBD twice a day. The CBD helps but only when combined with the gabapentin. The condition is permanent and I can not have further immunotherapy or chemo treatment. This complication is rare but when one gets it, it is 100%.

j-o-h-n profile image
j-o-h-n

1 Neurontin/Gabapentin 600mg twice a day (morning and evening).

1 Duloxetine (Cymbalta) Hcl Dr Caps 30mg once a day.

Try this combination for your neuropathy....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 09/22/2019 4:51 PM DST

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