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#21 Furr

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Posted 23 April 2015 - 05:42 PM

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.

 



#22 hannibellemo

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Posted 23 April 2015 - 06:00 PM

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)


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#23 danno

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Posted 23 April 2015 - 06:27 PM

I posted this in the wrong forum



#24 Furr

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Posted 23 April 2015 - 06:31 PM

I am so glad I opened the door. 



#25 mamawarrior

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Posted 23 April 2015 - 06:55 PM

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.

#26 pammartin

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Posted 23 April 2015 - 06:59 PM

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.



#27 Furr

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Posted 23 April 2015 - 07:03 PM

I should as well.



#28 pammartin

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Posted 23 April 2015 - 07:12 PM

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. 



#29 gerry

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Posted 23 April 2015 - 08:48 PM

Thanks mamawarrior for your input.

 

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



#30 pammartin

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Posted 23 April 2015 - 11:25 PM

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.



#31 JPD

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Posted 23 April 2015 - 11:36 PM

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.


January 15: .53%

April 15:       .78%

July 15:      1.1% - upped dosage to 400mg after this test

Oct 15:       .85%

December 15:  .28%

March 16: .29%

July 16: .34%

October 16: .11%

January 17: .081%

April 17: .055%

July 17: .135%

Oct 17: .008%


#32 gerry

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Posted 23 April 2015 - 11:51 PM

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. :)



#33 gerry

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Posted 23 April 2015 - 11:56 PM

"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

 

 



#34 rcase13

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Posted 24 April 2015 - 06:02 AM

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.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#35 Furr

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Posted 24 April 2015 - 06:04 AM

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

#36 Tedsey

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Posted 24 April 2015 - 10:42 AM

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. 



#37 Billie Murawski

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Posted 24 April 2015 - 08:47 PM

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



#38 Antilogical

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Posted 24 April 2015 - 09:38 PM

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


Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.

Rx: 03/2012-Gleevec400.  Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).

Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.


#39 pammartin

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Posted 24 April 2015 - 11:19 PM

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



#40 Billie Murawski

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Posted 24 April 2015 - 11:41 PM

 

"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






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