22 replies to this topic

[Skittles]

I want to thank Trey for all of his time and effort in answering my questions and add that we are all so fortunate to have a fellow CLMer that is so dedicated to researching and above all sharing with us.  He calls himself a CML Geek...how great for us!  Trey, Trey, he's our man ;-)   Skittles

[ROM1212]

Ditto.

Thanks for your patience and desire to help us all, Trey.  We appreciate you.

[reedgirl]

Definitely have to agree with you!  I feel that way toward everyone who takes the time to answer my questions and post thoughts, but esp to Trey who gives such knowledgeable information!

[Beanie]

I totally agree.  Trey knows his stuff and I'm sure everyone has benefitted from his posts.  I had read these posts for months before I finally got up the nerve to post a question.  Several people answered it and I was very thankful, but when I got an answer from Trey, I felt truly honored.  I told my family "Trey answered my post!, Trey answered my post!".  They were like "who the heck is Trey?"  I told them that he was the CML Expert!   They didn't really understand, but I'm sure everyone on here will.  Thanks again Trey.

[Tedsey]

How funny you say that Beanie!   I also tell my family, "Trey answered my post!"  It is quite an honor.  We are very lucky to have you, Trey.

P.S. I edited my post.  Sorry I mixed you up Beanie.

[scuba]

Yeah....yeah...my wife wants to know what "Trey thinks" also....gets me bummed.

I tell her - what about what "PhilB thinks". 

She says - PhilB's the British bloke - no?  I say yeah.   She says, "What does Trey think".

'nuf said.

[fawnc46574]

I don't normally post on here but this is one post I feel very strongly about. We are all very fortunate to have Trey as a freind and a place to get great information It is terrific that he is taken the time to do the research to help all of us deal with our various problems/ concerns. I am sure he will never know the true number of people that he has helped because there are some people like me that jsut "lurk" and read the posts and find comfort in the fact that there is someone else going through the same things we are. SO I agree THANK YOU TREY from me and all of those who just browse the posts

[busdriver]

I agree that Trey has helped me a great deal as well.  There has been many of you that have helped me as well.  I feel very blessed to have all of you in my life!

xox,

Beth

[PhilB]

'Our' CML geek?

He's anybody's CML geek, the tart!

[sandimartini47]

Trey,

You are the greatest!!  Thank you, thank you for all of the time and patience that you take answering our question.   We all can say CCKMA--your fellow cmler, sandi

(Cancer can kiss my Ass)

[Trey]

Hey PhilB,

How's the hibernation going?  I'm not going to say I have missed you -- that would just validate your only popping up to say some smart-butt sharty thing or another.

But I think Hannibellemo might have missed you.  Maybe a couple others.  But I won't say I have missed you -- you do not get that satisfaction from me -- no way, no how.  Or is it know how?  Anyway, as I was saying....

Well, at least I can always count on you to break up an over-the-top thread.  Note that they are all ladies, except Michael, and I think he plays from the red tees on occasion.

So go right ahead and withhold yourself from our presence.  See if we care.  Well, maybe a little, but I'm not talking about me -- no way, no how....

[nadee546]

I agree with all the good comments about Trey. I was so nervous posting a question because I didn't want to sound dumb. But when I finally got up the nerve Trey answered my questions in a straight ,forward and understandable way. Thank you Trey I really really do appreciate all that you do  for everyone on this site. I have learned so much from you.         Nadee

[PhilB]

Thought I'd better intervene.  Good job I happened along before you needed to buy a bigger hat.

I particularly like Nadee's latest posting.  I wouldn't like to comment on the 'straight' but I'd definitely agree about you being a bit forward.  As you point out though, the ladies seem to like it for some unknown reason.

The hibernation is a tricky one.  CML gets me depressed and, after my inital research frenzy, I'm now happiest when not thinking about it.  On the other hand I love all my fellow CaMeL's on here and don't want to lose what my wife calls my 'imaginary friends'.  What to do?  Could we start a cookery forum instead perhaps?

All the best

Phil

[starlago]

Trey, please accept my thanks for the valuable information you've provided to me via this message board.

At my diagnosis in February, I also was a frantic (and frenetic) researcher.  Now, like Phil, I'm happiest when I'm not thinking about it.  As a matter of fact, I was paid a great compliment by my sister who told me "I forget you have cancer.  You're so normal!"  Mind you, she told me this while we were arguing about the best way to winterize a toilet:  Should you or should you not put antifreeze in a toilet tank you have removed all water from?!

It's a wonderment to me that I can forget about it due to the miracle of Sprycel.  (Well, at least most of the time.....)

I like the idea of a cookery forum.....

[sandimartini47]

Hi Starlogo,

Good comment about "she forgot you had cancer."  I find myself not thinking about it for weeks at a time and I actually think that I mentally feel better when I do that--not as depressed.  Of course, it is always there but I was depressed long enough about this disease--a few months--and decided that it was getting me nowhere so I thought, "I better start living while I can live."

Oh and by the way, my brother is a plumber and he says you do put antifreeze in the toilet in the winter if you are not using it.  My husband says he puts windshield washer fluid in the toilet to winterize it if the toilet is not in use.  He says, "it keeps your windshield from freezing so it should work for the toilet."  "Huh" That I am not sure about --Good luck and thank you for your post.  It was really uplifting. sandi

[hannibellemo]

Hmm, now I'm concerned, I'm planning my trip to London for March 2011. If I promise not to mention CML can we still meet for merlotinib and sushi? Of course, I would like to meet your wife - unless she is going to mess with my self esteem and make me feel all imaginary and stuff.   I would especially like to try her adult trifle - that sounded yummy!

BethG, what are you doing in March?

Pat

[PhilB]

Hi Pat,

Would love to meet up, but I think sauvatinib blanc would go better with Sushi.  I've pinged you an email.

The 'imaginary' bit was lifted from a cartoon showing a man hunched over his keyboard whilst the toddler playing behind him shouted out 'Mom, Daddy's talking to his imaginary friends again' and the name stuck.  I definitely promise real, 3 dimensional trifle.

Phil

[Trey]

Since Pat "Hannibellemo" asked, here is where the "Best Imaginary Friends" thingy got started by PhilB....

 

 

Also, in memory of "Reedgirl" who was on this post, who we lost.....

Edited by Trey, 31 January 2018 - 09:00 AM.

[Cathy]

I also have to say I'm very thankful for Trey! He has really been around to help all of us for a longggg time! I so appreciate his 2 cents and help. Always answers quickly my questions and everyone else's.

Thank you for taking your time to help! It is so appreciated. As well as the jokes and bantering with Phil, and everyone its always good to laugh!

 

Thank you Trey please don't stop! much appreciated!

[Jan0080]

Trey, everything said is spot on.  You are the extra 20 minutes time with my Oncologist - who is a super guy but doesn't have the time to go over the nuances of all of the adverse effects but to his credit checked with Dr Shah at UCSF and okayed my dose reduction to 20 mg.

Trey, I gather that you are a full member of this club - coping with CML but I wonder what your real occupation is.  We all owe you a depth of gratitude that cannot be repaid.  last February through April, I went through some terrible muscle pain and then as a CPA during the crucial March 15th to April 15th time period, I had double vision while reading numbers!  I didn't even realize that I had a problem until one of my friends asked why I was keeping one eye shut!  Dose reduction solved that problem. 

 

TKI's are miracle drugs with some serious shortcomings.  Many Doctors don't care about itching issues or headaches unless they get to the point where we threaten to stop taking our meds.  This site has given this community the ability to share stuff that otherwise might not be shared.  You have been wonderful and if you are ever in Los Angeles, please let me take you to dinner!

 

Fred aka Jan0080