Newly diagnosed. Xtandi side effects?

[GHep]

Can you please supply us with information on Xtandi?

Gary has been diagnosed- not sure of the side effects.

[Patrick Turner]

I have been on Xtandi since last April, and I had Lu177 also last year, and I cannot really identify any side effects.

I'm 72, and my fitness is good because I cycle 200km+ per week. I was diagnosed Dec 2009, Gleason 9, Psa 6, inoperable,

and I also have been on Zytiga in 2017 for 8 months and that gave more side effects with upset heart rate and summer heat affecting my cycling. 

Pca is under control now, Psa < 2.0 but rising and so fight continues when docs know more about what is going on.

It seems Lu177 did not kill all mets, and that 2 bone mets are active, but small, so not a threat yet.

Xtandi may be not working now, and maybe it explains Psa rise. 

Keep well,

Patrick Turner. 

[Kevin Martin]

GHep,

This info is from a document I received when I went onto a Clinical Trial that included Enzalutemide (Xtandi) and Lucrin + radiation.

Side effects for Enzalutemide.

Participants treated with Enzal.for metastatic prostate cancer in clinical trials have reported the following events. These events were also reported in participants who received inactive placebo. Some of these effects may be due to the underlying prostate cancer.

Very common ( more than 1 in 10)

= nausea, vomiting, diarrhoea, constipation, loss of appetite.

= aching joints, back pain, painful muscles and bones

= headache

= cold like symptoms

= fatigue

= muscle weakness

= fluid retention in feet and legs

= hot flushes

= shortness of breath

= loss of weight or weight gain

= low red blood cell count which can make you feel tired or light headed

= loss of libido and impotence

= decrease in white blood cells which might increase the chances of infection

 

Common  ( between 1 in 10 and 1 in 100 )

= abdominal pain

= dizziness, altered taste sensation, tingling in hands and feet

= trouble falling or staying asleep, anxiety, depression

= blood in urine, frequent urination, urinary tract infections

= high blood pressure

= breast tenderness and swelling

 

The page also says that all types of ADT ( androgen deprivation therapy ) have side effects, those shown seem to be the same as above plus osteoporosis, blood sugars and cholesterol. Managed by your GP.

 

From my experience and talking with others, some have very few side effects, others, a lot. Everyone being treated reacts to the same treatment in different ways, some I am aware of have had to cease the Enzal. treatment because the side effects are too severe.

I am coming up to nearly 2 years from when treatment finished and still get the odd hot flush of a night, find it hard to go back to sleep after about 3 am, only in the last 3 months have felt a lot stronger and will have the breast problem forever.

 

I wish Gary all the best and hope that all turns out well for him.

The trial I was on was for 96 weeks weeks of 4 capsules everyday of Enzal, injections every 3 months of Lucrin (ADT) and 39 days of radiation.

That combined seems to have worked for me, remission after 8 months and now have been there for 3 years.

The Oncologist only said yesterday by comment that it looks like Enzo has done it again.

There are several treatments available now and I hope that whichever one he ends up taking works.

 

Regards

Kevin Martin

 

[DiRi]

Hi - my husband has been on Xtandi for about a year now.  He tolerates it pretty well and initially was on 4 tablets and used to get a weird sensation through his body that he described as tingling, but the Oncologist dropped his dose down to 3 and this particular symptom seemed to go away without compromise to his treatment.  He also has a 3 monthly injection of Zoladex.    Fatigue would probably be his worst side effect but it has so far kept his PSA under control.    I wish you well and think this seems to be a very effective treatment. All the very best.  Di

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