45 replies to this topic

[Furr]

I have horrible joint pain, my heart is on fire, I can't catch my breath and I never feel very well. I also have heart disease. I certainly know what it is like to deal with CML, TKI's and the side effects. I must be old-fashioned, or just old because I have never felt the need after taking a crap to post on Facebook or the cml website what it smelled like, turkey gravy or not. Stinky butts, nasty crotches, toe nail uglies, and the like are just not funny to me. Obviously y'all have a different sense of humor than I do. So I have decided that in the future, I will do my best to keep my opinions to myself. Although I do wonder about one thing. If I have an erection lasting longer than four hours, why in the heck should I call a doctor? Furr.

 

[hannibellemo]

Just in case that is a serious question. The condition, called priapism, seems funny only to those who have never suffered it. ... Erections lasting longer than four hours cut off the supply of fresh blood to the penis. Wouldn't want your penis to die! 

 

(And, no, being female I have never had the condition - just in case someone was thinking of making a comment)

[danno]

I posted this in the wrong forum

[Furr]

I am so glad I opened the door. 

[mamawarrior]

Danno,

While others may think you are joking around, you may want to move this to the transplant forum where more complicating transplant related issues do occur and folks that are experiencing things like this can answer without judgement.

I cant answer this but i will say, if you had TBI and more so targeted testicular radiation since the testicles are a sanctuary site for relapse, i certainly would think that it could be possible. Also chronic gvhd can have an effect on skin, hair follicles etc.

I think it would be wise to speak with the oncologist, and it may be worth seeing a urologist.

[pammartin]

I don't know if I should be concerned, entertained, supportive, or just sit here and keep my fingers to myself. 

 

Opting for most of the above.

[Furr]

I should as well.

[pammartin]

I am sorry you are not feeling well.  I have a few heart issues also.  They are not fun or entertaining.  I find humor in most situations, and I use it as a tool when something is not funny.  It is how I have gone through most of my life and it works for me.

 

That being said if my mother knew half of what I have shared on this board as well as the Let's Just Talk one, she would be kicking my arse clear up to my shoulder blades.  You see my mother played the piano/organ for the local Methodist Church in town.  We were not asked if we were going to church, we were ready to leave by 8:40 a.m. 

[gerry]

Thanks mamawarrior for your input.

 

Sometimes things that seem a bit silly can open important discussions for people.

[pammartin]

Billie, I think of your son often.  I am sorry he went through yet another issue because of his condition.  We joke and kid but we also have very serious issues we try to work through via this board or with humor.  And/or both.

 

Thanks for sharing.  Now all I wanna do is give you a big hug.  And drink your wine.

[JPD]

Again, for the record - I've said nothing that isnt 100% true.  Aside from the toe nail fungus, I have no reason to believe that all my other symptoms/maladies are not related to my medication.  Therefore, they have reason to be here.  Now, the manner in which I describe them - and the graphic (yet totally accurate) detail may be a bit much - and Ill try to cut back on that.

 

Also, the door was slung open when many people on the board started talking about gleevac related "sharts" and I, perhaps, took liberties with my expectations of everyone elses sensibilites.

 

No offense was ever intended.

[gerry]

JPD - I love Karl Pilkington.

I skip over anything I don't want to read. 

 

I've been off Gleevec for 17 months now and I'm starting to forget the side effects of Gleevec, (though it took awhile for them to disappear). I keep reading to see if there are any known cures - (even off the TKI we know that the CML may or may not return).

 

I love that Trey and others help everyone with their issues.

 

This is one of the better (active) forums for people to contribute to, There will be a difference of opinions of what is posted, but hopefully people will continue to read and post and repost if a thread is hijacked and they still need a serious answer.

[gerry]

"I've never understood the "things to do before you die" idea. If I was ill, I'd be in no mood to have a swim with a dolphin. - Karl Pilkinton.

 

Or one of my favourites

"I found that being with happy positive people annoys me" - Karl Pilkinton

 

 

[rcase13]

Honestly I hope nothing changes. Its those detail descriptions that helped me to get a better understanding. That the side affects I have are normal and just part of the CML game we are all forced to play. Most of the CML side affects are gross. It is what it is.

[Furr]

Tee, his description word for word. Just so you know.

[Tedsey]

You are always free to start a new topic with your exact question or issue (it doesn't matter if it has already been posted--there are no rules about that).  Starting a new topic is always an option if you feel a thead has become too busy with what you view as off-topic banter.  You are free to read and post what you wish and disregard what doesn't help you. 

[Billie Murawski]

Billie, I think of your son often.  I am sorry he went through yet another issue because of his condition.  We joke and kid but we also have very serious issues we try to work through via this board or with humor.  And/or both.

 

Thanks for sharing.  Now all I wanna do is give you a big hug.  And drink your wine.

Pam, I'll share my wine with you anytime.      Billie

[Antilogical]

I will share my wine with anyone.  No restrictions.  But, as Trey said, balance is good.  Behave yourselves, and you may have another glass....

[pammartin]

Bottles, I was thinking we were drinking bottles.  Who brought the glasses?

[Billie Murawski]

 

"I've never understood the "things to do before you die" idea. If I was ill, I'd be in no mood to have a swim with a dolphin. - Karl Pilkinton.

 

Or one of my favourites

"I found that being with happy positive people annoys me" - Karl Pilkinton

 

 

gerry, I've never heard of Karl Pilkinton sounds like a good read, is it available in the states.     Billie