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Old 12-08-2010, 03:50 PM   #1
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Christmas coming early....

Well I have posted a few threads relating my experiences concerning the after-effects of radiation therapy and none of them good. I have relunctantly left the management of my issues with the clinic that treated me. I had not been happy with the aftercare I had been receiving. Yet dealing with other urologists and colo-rectal physicians was difficult. You would think that they would be up to speed on the special conditions and precautions in dealing with such a case - but most are not.

I put my trust back with my original care providers and things are starting to turn around. I seem to be gradually regaining my urinary functions. I have been taking a series of medication used to relieve allergies and this time it has worked.

I am a long ways from 100%, maybe at 50%, but a huge improvement. Hopes are that when the colo-rectal issues cool down , that all will return to a level of normalcy that I can live with.

 
Old 12-08-2010, 05:42 PM   #2
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Re: Christmas coming early....

Great news! Glad you are on your way. Complications like yours are, thankfully, rare, and many doctors are inexperienced in dealing with them. The body, given the chance, will try to heal itself, and it sounds like you are giving your body that chance. I wish you a full and speedy recovery.
- Allen

 
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Old 12-09-2010, 05:50 AM   #3
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Re: Christmas coming early....

Hi Bwhitney,

Surely that was an earlier present. Hope that you come to terms with the other 50%, the earliest.
Let’s celebrate for that.
Baptista

 
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Old 12-09-2010, 07:38 AM   #4
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Re: Christmas coming early....

Hi bwhitney,

So glad to hear that you are improving with your post radiation problems. I gave you a post a while back saying that it took me a year and a half to get back to what I considered "normal". Now that more time has passed, I hardly even think about the issues I had that were just like yours in the beginning. In terms of percentage, I would have to say that I'm 99.9% returned to what I was like before the radiation.

From the sounds of it, you are heading in that direction as well. Great news!

Take care. Lionel

 
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Old 12-10-2010, 06:40 AM   #5
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Re: Christmas coming early....

Hi B,

I'm glad that Santa had the right present for you!

Jim

 
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Old 12-13-2010, 11:07 AM   #6
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Re: Christmas coming early....

BWhitney,
I just looked into this forum after a long absence. You and I exchanged emails last year. I was just beginning treatment at Dattoli and you were nearly done. We never had the pleasure of meeting in Sarasota.

In my research, I found only postitives on the Dattoli Clinic, but maybe aftercare is a shortcoming. Here's hoping your problems resolve themselves.

My recent one year checkup was worrisome, as my PSA went up to 2.01. I know the value can jump around a bit for a fairly long period of time after radiation treatment. Still, I would feel lots better if it had went down from the 1.85 reading at the conclusion of treatment. Luckily I'm not dealing with any of the side effects that you are, except for ED and a bit of dribbling. I'm hoping that these don't get any worse. I recently read that 50 to 60% of radition patients have some ED issues. I don't remember seeing that figure before my treatment.

Anyway, the best to you in the future
Mike

 
Old 12-13-2010, 05:55 PM   #7
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Re: Christmas coming early....

Quote:
Originally Posted by FoundryWorker View Post
BWhitney,
I just looked into this forum after a long absence. You and I exchanged emails last year. I was just beginning treatment at Dattoli and you were nearly done. We never had the pleasure of meeting in Sarasota.

In my research, I found only postitives on the Dattoli Clinic, but maybe aftercare is a shortcoming. Here's hoping your problems resolve themselves.

My recent one year checkup was worrisome, as my PSA went up to 2.01. I know the value can jump around a bit for a fairly long period of time after radiation treatment. Still, I would feel lots better if it had went down from the 1.85 reading at the conclusion of treatment. Luckily I'm not dealing with any of the side effects that you are, except for ED and a bit of dribbling. I'm hoping that these don't get any worse. I recently read that 50 to 60% of radition patients have some ED issues. I don't remember seeing that figure before my treatment.

Anyway, the best to you in the future
Mike
Mike, good to hear from you. I am sorry your PSA is where it is at, but I believe that is not uncommon. I think it has a tendency to flutuate initially before settling down , if I recall my research.

As far as the ED issues, yes, unforunately, those are the numbers. They are about the same as a radical. John Hopkins publishes a paper compoaring and contrasting all the variuos treatments. The initial ED may likely be related to hormonal therapy, if you were on it. ED from radiation can come 2 years later. Apparently all the radiation tends to cook all the blood vessels and down the road certain things stop working. That is only in 50% of the patients. With what I am experiencing now from after effects of radiation I woould be surprised if I didn't have an ED issue. So when you can get it up, get out there and enjoy it. Right now my T level is a 4 so it's a mute point.

Watched "the Bucket List" for the first time the other night. Jack Nickolson has a memorable line. His advice to his assistant on getting old, " Never pass up a bathroom, never waste an erection, and never trust a fart". Boy, does that apply!

My conditions thankfully are slowly improving. The rectal pain is the worst issue now and as they tell me, it is going to take time, a long time, as in months. I hope you escape these issues. They are not that common. Mine was a very aggressive treatment. It took care of the cancer, for sure, but OMG, no one ever mentioned these types of side effects as a possibility.

Yes, I was very dissappointed in the follow up care, but I switched nurses, Dr. Dattoli became involved and we seem to be making progress.

Good hearing from you , Mike, my fellow alumni. Good luck and God bless.

 
Old 12-15-2010, 02:31 AM   #8
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Re: Christmas coming early....

Quote:
Originally Posted by FoundryWorker View Post
BWhitney,
......
My recent one year checkup was worrisome, as my PSA went up to 2.01. I know the value can jump around a bit for a fairly long period of time after radiation treatment. Still, I would feel lots better if it had went down from the 1.85 reading at the conclusion of treatment. Luckily I'm not dealing with any of the side effects that you are, except for ED and a bit of dribbling. I'm hoping that these don't get any worse. I recently read that 50 to 60% of radition patients have some ED issues. I don't remember seeing that figure before my treatment.
Mike
Hi Mike
I do not know your status before your RT, but your PSA of 2.01, after radiation, is not considered abnormal. The important is to get your Nadir and start from there the judgement.
In many cases of RT, this “bounce” can take 24 months before it goes down. A quick sharp drop (less than 6 months) followed by a continuous increase is regarded as poor prognosis.
Once one gets to his Nadir (nPSA), the number is kept there for a long period of time. High nPSA numbers of 2, 3, 4 is somehow common.
After Nadir, recurrence is only considered on the third consecutive increase. However, that does not mean you have some urgency on starting a new treatment. PSADT and velocity will be taken to access your status.
In my case I had a PSA of 3.80 before starting RT. I got to nadir (0.05) on the 13th mounth after treatment, and got to biochemical recurrence on the 29th month.
Hope this info helps for a peaceful Christmas.

Take care
Baptista

 
Old 12-15-2010, 05:29 PM   #9
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Re: Christmas coming early....

Baptista,

Thanks for the info, it is helpful.

 
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