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WHY don't we pay attention to this? (Read 133554 times)
plateglass
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Re: WHY don't we pay attention to this?
Reply #300 - Dec 15th, 2010 at 5:31pm
 
sorry I havent been around in a while.  Glad to report NO ha's since my last update.  My doc is having me cut the clomiphene tabs in half now.  My test level was over 900 with no gel and just the clomiphene.  Erics parents... I have my fingers crossed for you and your son.

Steve
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Wouldn't it be easier if we just cut off your head?
 
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alleyoop
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Re: WHY don't we pay attention to this?
Reply #301 - Dec 15th, 2010 at 10:47pm
 
Thanks for the update Steve, and glad you are still PF.  Please keep us posted on how the 25mg doses go.

Bobb
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Re: WHY don't we pay attention to this?
Reply #302 - Dec 17th, 2010 at 7:19am
 
plateglass wrote on Dec 15th, 2010 at 5:31pm:
sorry I havent been around in a while.  Glad to report NO ha's since my last update.  My doc is having me cut the clomiphene tabs in half now.  My test level was over 900 with no gel and just the clomiphene.  Erics parents... I have my fingers crossed for you and your son.

Steve





Excellent news Steve.



Paul
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Paul
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Callico
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Re: WHY don't we pay attention to this?
Reply #303 - Dec 17th, 2010 at 11:56am
 
Really glad to hear it Steve.  Hope it lasts forever.

Jerry
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
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Re: WHY don't we pay attention to this?
Reply #304 - Dec 20th, 2010 at 5:49pm
 
Thanks all I hope it lasts forever too.  As of now this Clomiphene Citrate is the best medication I've ever taken.  Not even one shadow!!  Thanks again all.   Grin

Steve
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Re: WHY don't we pay attention to this?
Reply #305 - Dec 31st, 2010 at 12:53am
 
Hey Alleyoop - I just noticed your from PTC.  We are in Senoia.  What Dr. do you use?  We just went to see a Dr. in PTC for a 2nd opinion and she told me that my Expectations were to high and asked me what I expect her to do.....I was SOOOOOOOO mad.

Anyway, I don't know if the Cholmid is working.  It seems he was getting CH but he was able to abort them easier.  Until the last couple of days.  The only thing that I know has been working has been the Melentonin that he was taking; 9 mg. of reg. and 3 mg. of Time released (2 staged).  This had taken away ALL of his night time hits, which in turn made less day time hits, and not as hard.

Well, he ran out of time released so we got another brand but it was 5mg and it was just time released.  The first night on the new melantonin he got a hit at 8am the next day, took O2 and it went away for the rest of the day.  The next day he got a MAJOR hit at 6am and he look horrible for the rest of the day and got more hits.  He was afraid to fall asleep but some times he would lay his head back and he was instantly asleep.  But the weird and scary thing is that the time he was asleep his eyes lids would flutter constantly and his eyes would roll back in his head.

I went instantly to get the stuff I usually use and he was able to sleep through the night without a hit but because of the day before, he was not 100%.  Well see how tonight is?

The one thing I have not posted is that Eric is a wrestler, a really good wrestler.  He has worked all summer to have a great year.  It has been his choice to try and work through this but I don't see his wrestling career to continue, which is very very sad.  He was good enough to have a chance for a scholarship by the time he graduated.  His dad and I have told him that we are ok if he can't do it anymore and that he should continue just so he won't disappoint us. He's still  having a tough time with this.  With all my heart, I wished I could be the one to get the CHs and not him. 
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bejeeber
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Re: WHY don't we pay attention to this?
Reply #306 - Dec 31st, 2010 at 9:06pm
 
Well glad to hear that at least the melatonin has been working for Eric.

Winning a battle on one front like that makes it sound like things are moving in the right direction anyway, and that a more comprehensive victory could be achievable in 2011.
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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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DennisM1045
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Re: WHY don't we pay attention to this?
Reply #307 - Jan 14th, 2011 at 10:24am
 
Hi,

It's almost a year now since I started HRT with TGel (1/21/2009).  This has easily been the most pain free year of the last 15.  I am very grateful and try to make the most out of every PF moment.

I went to my Urologist today for another PSA screening.  He has become increasingly concerned with the velocity of my PSA #s.  They've gone from a 1.5 to a 2.5 and no up to a 3.5 since starting HRT.  Based on the rate of change he wants me to have a prostate biopsy.  The procedure is scheduled for 2/1.

There is no family history of prostate cancer in the family and I'm only 50.  My Father also had an elevated PSA.  He had a biopsy done which was negative.  Though he was at least 15 years older than I am at the time.

I believe that my PSA was artificially low because of my initially very low Testosterone levels (116 then, now 375).  So I'm not overly worried and will report back when I get results.

Why am I telling you this?  Because there may be another clusterhead going through the same thing now or will in the future. 

I have to admit that the thoughts of losing my magic bullet are all I'm really worried about at the moment.  But, if I do then at least I'll have had a great year off from CH.

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Re: WHY don't we pay attention to this?
Reply #308 - Jan 14th, 2011 at 11:53am
 
Praying it comes back normal.

Jerry
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"Political correctness is a doctrine, fostered by a delusional, illogical minority, and rabidly promoted by an unscrupulous mainstream media, which holds forth the proposition that it is entirely possible to pick up a piece of dung by the clean end." Texas A&M Student (unknown)
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alleyoop
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Re: WHY don't we pay attention to this?
Reply #309 - Jan 14th, 2011 at 12:03pm
 
Thanks so much for posting this Dennis!

Although our therapies are different (clomiphene citrate vs TGel), they are also very similar.  Since starting with the clomiphene some two and a half years ago, I have been having my PSA checked semi-annually.  So far, so good.

Wishing you a negative biopsy...

Bob
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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Re: WHY don't we pay attention to this?
Reply #310 - Jan 15th, 2011 at 9:33am
 
Bob,

If you don't mind my asking ...

Did your PSA bump up at the beginning of your therapy? 
How consistent has it been over time?
How many points did you recover on your Testosterone level overall.

-Dennis-
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« Last Edit: Jan 15th, 2011 at 9:34am by DennisM1045 »  

Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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alleyoop
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Re: WHY don't we pay attention to this?
Reply #311 - Jan 15th, 2011 at 10:20am
 
Dennis,

Let me request my past results from my GP and neuro, and I will get back to you.

Bob
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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DennisM1045
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Re: WHY don't we pay attention to this?
Reply #312 - Jan 15th, 2011 at 11:05am
 
No worries Bob.  I was just curious if you knew.

Thanks...

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Re: WHY don't we pay attention to this?
Reply #313 - Jan 16th, 2011 at 7:36pm
 
Dennis, I'm glad you have had a "better" year recently and also that you are monitorring PSA.

I am hoping it is just an adjustment to the therapy and my best wishes are with you.

You bring up a good point regarding PSA and I know I have had mine checked a few times over the past two years and my doc says eveything is OK but I have never asked for the numbers to track any change myself...so i don't know if I did change and it was  still within the "normal" range or whether mine have remained the same. I will ask for my numbers at my next visit.

I too have wondered at what point the rug will pulled out from under me with the HRT as the past two years have been a "gift" to me.

I do hope you share your experience with the psa followup with us either here or through pms especially for those of us in the same Testosterone boat (which includes synthetic testosterone or natural induced by Clomiphene)

Thanks for posting Dennis.

Paul
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DennisM1045
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Re: WHY don't we pay attention to this?
Reply #314 - Jan 16th, 2011 at 8:18pm
 
Count on it paul Wink

If it's just a normal outcome of the body adjusting to normal Testerone levels and I can help another clusterhead avoid the stress of "not knowing" that I'm going through now, I'll be happy to do it.

On the other hand if it turns out that there is something to be concerned about, I'll be very thankful that I turned to HRT and uncovered it as early as possible.  Without the close monitoring over the last year, it might have gone undetected for quite a while.

I've been doing more reading on "PSA velocity" and why it concerns Drs.  Scary stuff.  Any jump of than 2 points or greater in the year preceeding diagnosis of prostate cancer is a bad sign for 3 year survivability.

Still hoping this is all just my body adjusting...

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Jimi
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Re: WHY don't we pay attention to this?
Reply #315 - Jan 16th, 2011 at 11:32pm
 
I don't want to hi-jack the thread but I wanted to add this.

Doctors used to use "as long as it is below a 4.0, it falls under the normal umbrella. They now say that it is more important to be watching if it is rising each year.

For me, mine went from a 1.5 to a 2.5 to a 3. My urologist did a biopsy and discovered prostate cancer. My psa would have still been considered normal under the old criteria.

So, yes us guys need to be checking the rise in numbers even if they are still small numbers, especially if you are taking testosterone treatments.
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Re: WHY don't we pay attention to this?
Reply #316 - Jan 20th, 2011 at 6:50pm
 
Jimi,
Thanks for that input.  and Dennis thanks for the information.  I am getting my levels checked now, both bits of info will help in my case, and I am sure others situations as well.  Ohh yeah by the way ... not one headache yet.  Still goin strong.

Steve
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Re: WHY don't we pay attention to this?
Reply #317 - Jan 30th, 2011 at 4:04am
 
Thank you all so much for sharing your info. My first post, my hubby has suffered CH for about 12 yrs now. He tends to go about 2 yrs inbetween his 2-3 wk cycles. He is getting hit again hard now and I started to research again (though didn't find much helper info in the past, i just cant bear to see him in so much pain and feel so helpless) I am soooooooooo thankful to have found this site! I have already gleaned so much on how to be a better supporter and how to be a better advocate for him. I am eternally grateful. Even just talking to him in the "lingo" I have learned here makes such a great difference. Him knowing he is not alone and there is hope and help. No more grasping at straws.(At least we will be grasping at better straws)after reading other post and info, I went out at 2 am night before last and got him four extra ice packs, 2 bottles of melatonin and as much redbull as i could find. next night he actually slept all night (the previous nights he was dancing at 9/10k with with maybe some 2/4 occasionally through the days and always shadows) today was the first day in weeks that I saw him WITHOUT an icepack tucked under his shirt! He has been so afraid of getting a CH he hardly ever goes with out one. Even sleeps with them during his cycle. God bless you all. I am off to study more about the meds. Just found this thread too interesting to put down!

Praying PFD&nights for all of you.
sorry if I rambled....
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Words can not express the gratitude I have for all of you who have, in the midst of such great pain, reached out and helped so many...
 
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Re: WHY don't we pay attention to this?
Reply #318 - Jan 30th, 2011 at 6:05am
 
Hi Dereksgirl!
Welcome to this great place and the caring people within...
He is SO Lucky to have someone like you in his corner, fighting for him!  Wink

It amazes me still about the number of people here that have had CH for 10-20 years even, and have only recently been diagnosed correctly!
I am sure this Forum is and will be, a Major force in getting the Medical world more 'clued up' on this terrible, life-altering problem.

With your research here, you have fast tracked his recovery and eased his suffering!
Well done to you!

Best Wishes

Gary
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Re: WHY don't we pay attention to this?
Reply #319 - Jan 30th, 2011 at 11:11am
 
Prayers going out to you Dennis for a good outcome.  Jimi, I hope you are well too.  Good luck to all others going through something similar and thanks for sharing your experiences.  I'm sure you know you are helping others by doing so.

Welcome Dereksgirl!  I'm a supporter too and as you've learned there is so much great information here.  I know that helpless feeling of watching your loved one suffer.  You've taken the right steps by coming here.  Definitely read up on the O2 and ask away.  The people here are wonderful.   Wink
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Re: WHY don't we pay attention to this?
Reply #320 - Jan 30th, 2011 at 3:22pm
 
Thank you and I will!
Praying for all of you and picking up my oar to row alongside you...
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Words can not express the gratitude I have for all of you who have, in the midst of such great pain, reached out and helped so many...
 
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Re: WHY don't we pay attention to this?
Reply #321 - Jan 30th, 2011 at 5:01pm
 
dereksgirl wrote on Jan 30th, 2011 at 3:22pm:
Praying for all of you and picking up my oar to row alongside you...


That is THE sweetest thing I have heard recently!

Many Thanks

Gary
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Re: WHY don't we pay attention to this?
Reply #322 - Jan 31st, 2011 at 1:03am
 
Thinking of you, Dennis!
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Re: WHY don't we pay attention to this?
Reply #323 - Feb 2nd, 2011 at 5:24pm
 
Biopsy yesterday.  Results in a week.  Fingers crossed Wink

Thanks everyone...

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Re: WHY don't we pay attention to this?
Reply #324 - Feb 2nd, 2011 at 7:09pm
 
We'll be praying for you Dennis...keep us posted.

Joe
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