19 replies to this topic

[Marnie]

Well, darn. . .

 

I had hoped that being back on Sprycel after a break to deal with pleural effusion would bring my numbers back down to that elusive zero.

 

However, that is not the case.  I am a turtle again.  After 3 months on 50 mg Sprycel (starting out with a week of 100 mg to get things kickstarted. . .my doc doesn't know this), my stupid PCR number are about the same at .1351 (odd that there are 4 decimal places this time. . haven't seen that since before my labs switched to this new facility). 

 

And to make matters worse. . .I think I can feel another pleural effusion building up. 

 

At least Christmas break is coming up.  Two whole weeks to relax and eat bon bons.

[pammartin]

Oh crap on the PE. Looking in from outside I am glad your numbers stayed about the same. If the numbers are not rising and you are back to 50mg it might take a while to get you back down to undetectable. When I went from 100mg to 150mg it took weeks before there was a difference. I know I am going to sound like the broken record, but that turtle was a winner. You are too.
How does the bubbly and bon bons taste together? I am becoming enamored with that carbonated wine, just wish it was red.
Take care

[hannibellemo]

I second Pam on the PE!

 

I've often wondered if I could go back to Gleevec, it's been so long since I had the liver issues, and I really didn't have many bad side effects, other than that major one, I mean. At least the sharts were fun to talk about and back then nearly everyone had them because nearly everyone was on Gleevec. (Sigh, I miss the good old days) In your case, I know Gleevec made you miserable, I wonder if it still would? 

 

I also think about it because it will be generic by the time I'm ready for Medicare and that will be a good thing for my wallet.

 

Take care and don't let the PE get too far along before you do something about it. Not that I think you are stubborn or anything - wink!

 

Pat

[pammartin]

Marnie? Stubborn? No way!

[PhilB]

Hi Marnie, sorry your numbers aren't dropping, but always remember that stable is a good place to be - and also very traditional at Christmas.  

 

Pam, have you ever tried any sparkling red?  The Aussies make some interesting sparkling Shiraz which goes rather well with the leftover goose on boxing day.

[jmoorhou]

Due to a rash I cut down Gleevec from 400 mg to 100 mg and slowly build up again.....and never got the pleural effusion or any side effects besides edema around eyes....back...

 

I have had the horrible sharts also   (oh the smell)...then I went on a diet and cut down my lactose intake and now don't have them!

[pammartin]

Phil, I have not found a sparkling red, although now I will look for one, thanks.

Sharts is another of those funny/LOL words! Especially if you are not the one sharting.

[Marnie]

My side effects were not so bad on Gleevec. . .except for that time we went walking on the beach and I went way too far away from a bathroom.  I had to waddle with my cheeks clenched for quite a few miles wondering in terror if I was going to make a spectacle of myself.  Every time I think about that, I picture Billie carrying around a coffee can, which was her solution for long walks. . at least she said she carried one with her!  My numbers however, were not good on Gleevec.

 

Maybe the bad thing about getting to PCRU is that once you've been there, it's really hard to be satisfied with anything else.  I have a feeling that for me, I'll just have to always be content with low numbers.  And I may be stuck with getting my lungs drained every 7 months or so.  Not sure that I have a p.e, but it sure feels like the start of one.  Time will tell.  That said. . .things aren't all that bad, so I won't complain (too much). 

 

Rosemount Shiraz is a really good Australian red wine.  I prefer white, but we have a pretty good stock of the Rosemount.  It's affordable and very nice.  I didn't realize that there was such a thing as a sparkling red.  I may have to give that a try!

[Trey]

Being a turtle is better than being a plastic buffalo in moose country....just sayin'

[Marnie]

Being a plastic buffalo is better than being an iron buffalo . . . at least for the moose. 

[pammartin]

One day I am going to figure out what you guys are talking about.  LOL

[Marnie]

It's Trey's fault.  He posted an . . interesting  . . . picture.  It might have been shortly after my moose and motorcycle story.  Which came just after the monkey butt episode, I think.

 

Surely you were around back then?

[pammartin]

I think at one time I found the thread.  I remember the monkey but powder because Billlie referred to it often and sent me the story.  LOL

 

How are you?

[Marnie]

It's the weekend!  I'm good.  Just sittin' around eating bon bons.

[Msbovee]

Hey you guys.  I'm trying to find my way around this forum.  I've been on Gleevec for 14  years.  My head is spinning around with the news that my doc( of the same amount of years) wants me to go off the drug and join his new trial.  If anyone is interested in such a trial, he, Dr. Charles Schiffer at Karmanos Cancer Center in Detroit is looking for people to join up.I don't want to mess with a good thing.  I have felt well on Gleevec, good numbers and only muscle, joint and bone pain...I'm alive!!!  I was in the original trial at Karmanos.  I am a very lucky woman and what makes me nuts is this insistence that I take a risk and join this trial in the interest of science.  Please talk to me about your feelings on all this.

[Trey]

Seems to me that you already did quite a lot in the "interest of science", being an original Gleevec user.

 

There are three options, all equally acceptable:

 

1) Keep doing what you are doing

2) Reduce dosage to 200mg per day

3) Stop taking Gleevec in a clinical trial

 

There is no wrong answer.  If continuing gives you peace of mind, then that is a good thing.

[Msbovee]

Thanks Trey...I just want to keep doing what I'm doing, but I think I'll have to find a new doc.  I feel it is get in my trial or find someone else.  That's pretty much why we felt he was saying.  I think my doc fired me!

Once I had the luck in 2000 to be chosen  for the original trial there was pretty much no choice.  They estimated I had 3 months to live. It was die or try this STI571 (Imatanib)...not much to think about there!

[Pin]

Hi Marnie, that stinks about your turtley results - how are your lungs feeling today, fingers crossed not another PE.

 

Speaking of Billie, does anyone know where she is at now? I miss her funny stories too.

 

I hope you had a good weekend eating bon bons

[Marnie]

Hi, Pin. . .

 

Billie and her husband are going through a rough time right now.  Send good vibes their way. 

 

Lungs are feeling o.k.  Not sure it's a PE, but I have a feeling that in a few more months they'll be sticking another needle into my back.  I see my onc next week and I'm sure we'll have a good conversation, though he doesn't seem to be great at detecting PEs.  I think this time I'll ask him if I can listen to my lungs.  Maybe I should ask Santa for my very own stethoscope for Christmas.

 

Hope all is well with you!

Marnie

[PhilB]

Am I the only one who thinks of Great A'tuin whenever someone mentions turtles?