HealingWell
Search Close Search
☰

Coming off HT

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/12/2013 6:52 PM (GMT 0)
I know this was mentioned in another thread, but first hand information is such a valuable tool.

I had my last Lupron shot on Feb 7, 2012.

March 12 2013, 13 months later.

Still not sleeping that well.....a lot of cramping(walking 4k a day appears to help)

Some burning when urinating.

Libito has returned, but not quite where it was before.

T level still below the norm(7-20 according to my Family Doctor)

PSA 0.29 slightly up.

I did forget to mention that I started Cialis(one a day), after my consult with my family Doctor, but despite the desired effect, I had to stop after 3 consecutive days because of sever muscle pains. I did start it again just yesterday(We've been walking 4K every day so I'm hoping that will help) and I will try going every second day and see how it works out on the DE and the SE.

Posted 3/13/2013 12:53 AM (GMT 0)
Foxrun -- return to "normal" was quicker for me.  but now that i'm 2.5 years out i feel even better so expect gradual improvement even after you think you feel "normal".  good luck getting it back cool .

ed

 

Posted 3/13/2013 1:45 AM (GMT 0)
Hi Foxrun...I'm confused at what your current T level is. Sorry, but I didn't understand the 7-20 your doctor gave you.

Michael
Posted 3/13/2013 1:51 AM (GMT 0)
Michael,
I think what foxrun is referring to RE: T levels,
anything below 20 shows HT is working.

BOOGEE
Posted 3/13/2013 2:15 AM (GMT 0)

Michael_T said...
Hi Foxrun...I'm confused at what your current T level is. Sorry, but I didn't understand the 7-20 your doctor gave you.

Michael

Mine was 4 and he considers normal to be between 7 and 20.
Posted 3/13/2013 3:16 AM (GMT 0)
I don't know if it is a US vs Canada thing but there are two different sets of units you see for testosterone levels: I believe they are ng/dl (nano-grams per deciliter) and nmol/l (nano-moles per liter). The inconvenient thing about converting between these units is that the conversion factor depends on the molecular weight and there is a different conversion factor for any compound.

For testosterone I think the conversion is
ng/dl = nmol/l * 28.82
and
nmol/l = ng/dl * .0347

So, assuming the normal range of 7 to 20 is in nmol/l then we get a range of 7 * 28.82 to 20 * 28.82 which is 201.74 to 576.4 ng/dl.

And now that I've done the math that range looks a bit low to me, especially at the high end. Before they wrestled me to the ground and gave my my shot my T level was just over 700 ng/dl which is high-ish but not unusual. In nmol/l that comes to 24.3 which is more than 20.
Posted 3/13/2013 11:17 AM (GMT 0)
I did 2 years on zoladex and felt like a Zombie at the end of it,Doc wanted me on it untill i became refractory but by my own choice i stopped the treatment.Six months off now and im feeling pretty much my old self again.Libido....im like a teenager.....muscle mass seems to be struggling to recover even though i work out regularly......most important im NOT depressed anymore.Psa was 40.2 in december and ive had bloods drawn but not asked the doc for my numbers since december.I am still having monthly zometa infusions to help with bone mets but basically i made the choice to drop adt in place of quality of life.Ive rolled the dice here by stopping Adt as i know but i just wanted to feel normal again even if it shortens my life.
PLease be clear im not suggesting anyone else stops receiving adt treatment,this was my own personal choice.Im only 46 years of age and i found the lack of testosterone a bridge too far!!.As my condition progresses i may have no choice but to get more adt shots....for now im enjoying life to the full.
Posted 3/13/2013 12:02 PM (GMT 0)

leeanglo said...
I did 2 years on zoladex and felt like a Zombie at the end of it,Doc wanted me on it untill i became refractory but by my own choice i stopped the treatment.Six months off now and im feeling pretty much my old self again.Libido....im like a teenager.....muscle mass seems to be struggling to recover even though i work out regularly......most important im NOT depressed anymore.Psa was 40.2 in december and ive had bloods drawn but not asked the doc for my numbers since december.I am still having monthly zometa infusions to help with bone mets but basically i made the choice to drop adt in place of quality of life.Ive rolled the dice here by stopping Adt as i know but i just wanted to feel normal again even if it shortens my life.
PLease be clear im not suggesting anyone else stops receiving adt treatment,this was my own personal choice.Im only 46 years of age and i found the lack of testosterone a bridge too far!!.As my condition progresses i may have no choice but to get more adt shots....for now im enjoying life to the full.

I may have walked in your shoes when I originally started my ADT and if it wasn't for my Brachy ONC, I would have stopped my treatment as well.....good luck man!
Posted 3/13/2013 12:47 PM (GMT 0)
FoxRun,

I just stopped Casodex on 3-9-13 and had my last Lupron shot on 2-4-13 (a year behind you). I know that it will take at least 9 to 12 months for that last shot to wear off. I will also write about coming off HT and the new/old SE's. So please keep us updated.

leeanglo,

Good luck! I know that was a diffcult decision to make. I was suppose to be on HT for 24 months but I am done after 19.

Dave

Posted 3/13/2013 12:51 PM (GMT 0)
FoxRun,

"Some burning when urinating"

Are you taking Flomax? This helped me with my burning.

Dave

Post Edited (Dave-Rockville,MD) : 3/13/2013 6:54:44 AM (GMT-6)

Posted 3/13/2013 1:33 PM (GMT 0)
i had the same treatment as you Foxrun and never had any burning until radiation cystitis which progressively got worse but was tolerable, and now it's gone (hopefully forever).
Posted 3/13/2013 1:38 PM (GMT 0)

Dave-Rockville,MD said...
FoxRun,



"Some burning when urinating"



Are you taking Flomax? This helped me with my burning.



Dave

Funny you should ask.....I asked my Family Doctor(I don't see my ONC anymore) the same question and he said it's probably "radiation cystitis" and he would have to refer me to my URO. I said not to bother as it is a small inconvenience in the big scheme of things.
Posted 3/13/2013 1:39 PM (GMT 0)

F8 said...
i had the same treatment as you Foxrun and never had any burning until radiation cystitis which progressively got worse but was tolerable, and now it's gone (hopefully forever).

I'm hoping the same.....and thanks!
Posted 4/3/2013 4:39 PM (GMT 0)

Another SE I have noticed lately is my sensitivity to white light in the office and any cooking at home that involves onions
Posted 4/3/2013 5:02 PM (GMT 0)
leeanglo

Interesting decision, I too need to make a similar decision as to whether or not to stop degarelex. (Zolodex didn't work for me). Oncologist is considering it. There is uncertainty as I have METS as seen through a PET, (not a normal scan). Oncologist is pointing out that in addition to the SEs, at my age i need to consider the harm being done to my body by the HT. I am trending up in weight and starting to lose muscle mass, despite exercising daily - with weights. On the other hand, my PSA is undetectable, and I dont want to wake the monster up... on the other hand, perhaps intermittent Ht will delay onset of refractory...on the other hand.......

Not an easy decision
Posted 4/3/2013 8:37 PM (GMT 0)
Keeping faith,I felt fairly well on Zoladex for about 12 months but dizziness and depression slipped in after this and I found my Qol to be going down hill so decided to quit.If I have to go back to ADt I would do intermittent.....my oncol was talking one month shots and wait for PSA to hit 20 then take another one month shot.....I know this sounds high but I'm just craving a little normality in life .
✚ New Topic ✚ Reply