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Bundle of Nerves


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#1 pammartin

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Posted 28 January 2012 - 07:28 PM

Boy oh boy, I can't stand myself this week!  Even while I was pushing to have the Sprycel dosage reduced, I worried about how I will respond to the 100 mg again.  I guess it is because I did not respond in October, then the Hydrea and Sprycel, the labs bottoming out, waiting three weeks without meds till they recovered, I am half out of my wits thinking it might happen again.  I have read every post, info, and documentation I can find stating 100 mg is as effective as the 140 mg, but why can't I convince myself is beyond me.  I did not realize how much this would affect me, and how worried I would be.  Today was the first day of the 100 mg, the reaction is interesting if I were looking at it as a counselor, I want to get labs done today, every day, to make sure I am still responding.  How ridiculous this sounds, even as I type it, but trying to convince my inner self is another story!  Geez, it really sucks when I make myself miserable.



#2 Judy2

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Posted 28 January 2012 - 07:50 PM

Hi Pam,

When will you be going for blood work? I know how you feel, after I went into renal failure for the 2nd time (without warning) last June I felt as if I had to have my creatinine tested every week. After 2 months of my kidneys being o.k  I begain to worry less. Hopefully, the same thing will happen to you. If you continue to get good lab results for an extended period of time I'm sure your anxiety will lessen quite a bit. In the meantime, if you start to feel sick call your onc (sometimes hard to tell the difference between emotional and physical symptoms but err on the side of caution) and know that after awhile this to shall pass. Think of how far you have come in the last 3  months, I'm hoping for you that by the summer CML will not be foremost in your mind. Also, try to remember that 100mg is the standard dose so you really should do well on that now that you have got your CML under control.

Judy



#3 Marnie

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Posted 28 January 2012 - 07:53 PM

It's not ridiculous.  Don't keep beating yourself up.  Though you want the labs done now, it wouldn't show anything anyway.  I know how you feel.  When I switched from G to S, I wanted the labs done immediately.  I went crazy when my doc made me wait 3 months for a PCR. It was worth the wait to see the dramatic difference in my numbers.  Sprycel is a powerful drug, and 100 is a good dosage.  I'm confident it will work well for you.  Just keep repeating that to yourself, and try to think about other things (easier said than done).  If you really need some things to distract you, I'll send you some math papers to grade.  I have a stack of them staring me down right now. . .ugh.

Marnie



#4 Lynne D

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Posted 28 January 2012 - 08:15 PM

I was on 400mg of Gleevec for 5 years and tried tasigna which I couldn't tolerate at all. I went back to Gleevec for about a year and started on 100mg of Sprycel. It worked pretty fast bit still had side effects so Dr. Druker dropped to 50mg and we waited 3 months for PCR test and my #s have never been better in 7 years.


Lynne Dagata

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"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#5 pammartin

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Posted 28 January 2012 - 09:08 PM

Thanks everyone, I am my own worst enemy most times, and probably harder on myself than anyone else ever was, is, or will be.  Judy, thanks for the words of encouragement, just posting and getting it out helped, although my family is great and supportive, they do not understand this angle, and perhaps never will.  Ida, one of my secret goals is to be taking 50 mg of Sprycel or less, perhaps one day I will achieve that goal, everyone is wonderful, but hearing from people who have 'been there, done that' for years is especially awesome, thank you.  Marnie, thanks, I love reading your posts, even if you threaten me with math papers.  I just finished 9 weeks of hell concerning algebra, and in seven more days I have another 9 weeks, makes me rethink the choice of taking general math in high school, back then you only took algebra if you were looking into rocket science, which I certainly wasn't.  Can't say thanks enough., you all are great.

Pam



#6 Judy2

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Posted 28 January 2012 - 09:26 PM

Hi Idagata.

Great to know that 50 mg Sprycel did the trick for you. What was your PCR # before you went to the 50 mg dose and what was it after 3 months? I just started on Sprycel 50 mg 1½ weeks ago and I'm afraid that that dose won't bring my # down and I'll have to go up to 100mg.

Judy



#7 Guest_billronm_*

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Posted 29 January 2012 - 12:02 AM

Hi Pam,

   After all you have been through it's only normal to feel like you do. After suffering through 3 years of major gi issues with Gleevac, my onc finally took me off of it. And I had a 5 week break before I started Sprycel

100mg. As soon as I went off G right away I worried about being off it for so long, then I worried about taking a new drug, What if the Sprycel didn't work? Will these side-effects be worse than G . and on and on we all start to get what we want then we're afraid of change.  If you were'nt feeling like this you wouldn't be (Normal)?

  How's your hair doing? On the lower dose it should start growing in pretty fast. I looked up hair loss while on medication one factor is stress another one is eating properly and taking vitamin B/12 and some other vitamins that might help. And anorexia can cause hair loss also. Are you eating okay? I just can't eat I have had no appetite since I wen't on that bp medicine. And down here it's even worse they make these big meals and they eat late. Sometimes I just can't eat with them at all. I've lost 12 lbs since my checkup in Dec. at the CC center. I'm not worried I'll put it back on real fast when I feel better. I had Ron buy me some V8 juice and I started the vitamin B/12 again 2500mcg. a day. So I hope that will thicken up my hair. At  least it stopped falling out again Luckily I had thick hair to start with.

  So hang in there you're headed in the right direction.

   I'm so homesick, I just wan't to go home and wallow in my own misery. It's so beautiful down here but basically all there is to do is go to the beach or shop. I'm not much of a shopper and I have to be so careful of the sun now.

   But Ron is really enjoying himself and his family is so happy to have him here. So I guess we'll be here through 'february'.

Take care I'll stay in touch.  Hi. Everybody don't forget me I'll be back.    LOL  Billie



#8 Lynne D

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Posted 29 January 2012 - 01:18 AM

I don't really know my last 2 sets of numbers because it was verbal on the phone with Druker just letting me know its working well. Plus I am out of town so even if I have them they are home. He seems really promising and maybe will reduce to 40 in a few months if next PCR is good.


Lynne Dagata

ldagata65@gmail.com

 

"Scar tissue is stronger than regular tissue. Realize the strength, move on" ~~ Henry Rollins


#9 Happycat

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Posted 30 January 2012 - 04:56 AM

Marnie, 

You can always grade them the way my dh's grad school buddy graded lab reports. He took the stack and threw them as far as he could, then assigned the highest grades to those that traveled the farthest! 

Traci



#10 pammartin

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Posted 30 January 2012 - 07:14 AM

That's why my grade was always low, it didn't fly very far!



#11 tiouki

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Posted 30 January 2012 - 10:13 AM

Hello Pammartin,

Don't be too hard with yourself CML can be very stressful, you are not ridiculous at all

About the dosage 100mg really do work so don't worry you'll get good results soon And I share your secret goal of taking only 50mg or less per day I think it will come too, this "reduced" dosage works for many people (It's been 5 months for me, 100mg each day, maybe after 9 or 12months I will ask for dose reduction if it works well ).

Good luck with that and let us know

Pierre






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