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Radiation myositis

Samsungtech1
Posts: 350
Joined: Jan 2011

Have been experiencing reallymhard core pain and sharp shooting pain, night sweats so bad I bring a towel to bed.  Thought I was getting the feeling back from biopsy.  Found out today I have a rare case of radiation myositis.  My Onc said "man you are really unlucky". Can not get much better than this.  Good thing was I thought I had non hodgkins lymphoma.  Had a marine buddy of mine die of that.  Bad, bad.anyhow when they do radiation, radio surgery for me, I guess it deateoys everything in its path. Severe pain is the result.  I believe it is better to tey and defeat this pain with both mind and exercise as opposed to drugs.  This is really hard core pain.

I would do the radiation again, and probably will, because it stopped the growth for awhile.  This ismamrare occurrence so do not let this influence your thoughts.  It happens. Be aware it can happen.

They told me my PSA was 0.000.  My pain is a nine. Onc said he had something to celebrate, my PSA, if this is as good as,it,gets then God Bless Him for theterrible things he has to go through.

 

Mike

VascodaGama's picture
VascodaGama
Posts: 1515
Joined: Nov 2010

Congratulations on the Zeros. I also celebrate the results but I am sory for your symptoms.

Hope you recover the soonest.

VG

Swingshiftworker
Posts: 616
Joined: Mar 2010

Sorry to hear about your misfortune, Mike.   Although the zero PSA is great, it obviously doesn't help that you now experience so much pain. 

Can you tell us exactly what muscles/tissues were damaged as a result of the radiation myositis and what remedies your doctor suggested?

Samsungtech1
Posts: 350
Joined: Jan 2011

It seems the radiation Onc and I had a chat and I told him the nodule showing up by left armpit was, according to the surgeon, scar tissue from the biopsy.  Rad doc said why take the chance.  I said "ok, do it". Well that was scar tissue and it did not like radiation.  

The biopsy was the most painful thing I had been through, until now.  Evidently I am losing all. My muscle mass, and I think nerve endings are involved.  My left armpit feels like it is raw, but it is not. Nerves firing all over the left side.  Pain moves all over left side.  No control on pain. Just constant.

They said predisone is the treatment for this.  Not sure why.  My Onc has to get with Rad Onc and see what he thinks.  Also asked me if I had been exposed to asbestos.  I said yes and he just nodded.  Who knows.  Thought I had met all the Drs. I needed.

Mike

Swingshiftworker
Posts: 616
Joined: Mar 2010

Sorry, Mike but I've forgotten exactly what PCa treatments you've received but, based on what you just said, your radiation myositis is apparently unrelated to PCa radiation treatment.  Did you have radiation treatment for lung or lympahtic cancer (which may be associated w/the pain in your armpit) too?

Samsungtech1
Posts: 350
Joined: Jan 2011

Swing,

My PCa started with bladder and lung metastisis.  The radiosurgery I had was for the nodules that formed in lung. The biopsy was to determine what type of cancer was in lung, still not sure why, it came back prostate cancer.  Anyhow that is why Ihad the radiosurgery.  

When I started looking this myositis up I found that it can happen anywhere in the body where they use this procedure.  This would include cy er-knife.  It is rare, and if I had options I would have chosen this treatment.  Like the old saying s€€t happens.

I also had RP, and broad spectrum radiation for spread to bladder.  

 

Mi,e

 

Samsungtech1
Posts: 350
Joined: Jan 2011

I quit the bar bells, strechy thing, and eliptical machine.  I still walk, but not sure if the exercise is making it worse. Hopefully this will define the parameters. Pain can get worse, not sure how, but maybe if I quit weights, and that stretchy thing, and let my arm rest it will stop pain.  

Love the marines sense of humor.

When we were building their base at Dong Ha they use to shoot at the revetments we were building.  They said it was snipers, but noone can shoot that bad.  Anyhow because we built things we had the gold standard of Nam, Lumber.  We traded some lumber for beer.  Brought the beer up to Dong Ha and their commander saw us onloading it.  He passed an order that we could only have beer between 1700-1730.  His troops could only chow down for same period.  Of course no one listened to him.  We were selling beer for 10 cents a can. Funny thing was snipers quit shooting at us.

Moral of this story is:Give a marine a beer and you have a friend until the can is empty.

Mike

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