47 replies to this topic

[Susan61]

Hi Marnie:

     You are one tough lady, and can beat anything.  I suffer with breathing problems for years from COPD/bronchial asthma or whatever.  They never give me a definite diagnosis.  Have had a rough time this summer with it.  More than usual.  I know that feeling of not being able to breathe.

   Just take care of yourself, and do not overdo things if it makes your condition worse.

    I have not been on here due to various other health problems, but trying to catch up again.

    You inspire others who are having issues with their TKI to just go on with life and enjoy it.

Susan

[Marnie]

No reason for inspiration.  I'm just a regular person (maybe a little stranger than most).  My "aha" moment came pretty quickly after diagnosis.  I realized that I could either piss and moan about things and feel sorry for myself, or get on with life.  I chose option B.  Not to say that I never piss and moan. . .but life's too short for spending much time doing that.

 

Seems like lately a bunch of us have been having a tougher time than usual.  I hope things start brightening up for you.  You've been through a lot lately.  Hang in there!

 

Marnie

[Marnie]

Hi, Sunshine, and welcome to the forum!  There are a bunch of wonderful people on here (though sometimes our humor can get out of hand).  This is a great place to get information, compare notes, to vent, and to find VBFFs (BFF = best friends forever, as the younger texting crowd says.  The V for virtual, since we aren't quite sure if we all are real people who actually exist). 

 

Most of us have gone through the stage you are in right now.  You will find your "new normal" and will get pretty comfortable with it, believe it or not.  The fatigue gets tiresome. . .but eventually it just becomes old hat, I guess.  The Sprycel headaches will pass.  Hopefully you won't have to deal with PE or PAH, but (as Trey mentioned), be aware of your body and be insistent when you talk to your oncologist.  They don't always understand the side effects, which can be frustrating.

 

Glad that you found us, and please continue to post. 

Marnie

[VickiW]

Hi Marnie!

just my 2 cents.  Haven't been on here in a very long time.  2 yrs ago I developed both peripheral and paracardial effusion on Sprycel.  Went off for a bit along with some steroids and cleared it up.  Went back on Sprycel lowered dose from 100 to 50 mg.   Worked fine for almost a year but popped up again, last July/August but not as severe. Off again then dropped to 20 mg and doing great for a year..  Forgot to mention I was dxd in 07, went on Sprycel in 2010 after complete failure on Gleevec.  Been in PCRU for 2 1/2 yrs with no change even during the dose changes.

 

Vicki

[Marnie]

Thanks, Vicki. . that's helpful to know.  I'm waiting on a call from my doc.  He wants me to see a heart/lung guy to see why I'm still having tightness in my chest.  Off Sprycel for a full month now.  Hopefully we'll get to the bottom of things soon, and figure out which direction to go. 

 

m

[hannibellemo]

Welcome, Sunshine! I had various minor, but irritating, side effects when I first switched from Gleevec to 100 mg. of Sprycel on Oct. 9, 2009 (but who's keeping track   ), but amazingly, no headache. Burning sensation on my face and upper arms and legs. Even though they looked perfectly normal, I thought they should be bright red to match the sensation. My first night was horrid, won't go there. Then, on Thanksgiving Day I just didn't feel good and that's when the malaise set in. I would want to hide under my desk at work because I felt so horrible. I took my pill with tears in my eyes on many days. I remember telling my husband on several occasions that I was afraid I would die. Then, after about 4 months, I would start to feel "normal" for a few days at a time and then after a couple more weeks I was back to CML normal.

 

I didn't recognize it at the time for what it was but I think I was just incredibly fatigued. Don't let the doctors and nurses try to make you feel like an idiot. I breezed right through Gleevec, loved it, until my liver decided it didn't. These are very powerful drugs that we all seem to experience in our own ways. 

 

Marnie and I developed pleural effusions around the same time, about 2.5 years in. After they resolved we both went on 50 mg. and have done very well. She developed another PE just recently, knock wood, I haven't. Maybe, I won't (I hope).

 

I don't know anyone that hasn't had issues of one sort or another with the drugs. You decide what you can live with and you decide what's the deal breaker and you discuss the deal breakers with your onc and try to figure out a way to make it easier.

 

My onc trusts me when I tell him about things I can't tolerate. I don't go whining to him with every little thing, I save that for all my BIFs (Best Imaginary Friends) on here!  

 

You will probably do great on Sprycel! When you don't feel good, own it, and to hell with what anyone else thinks!

 

Good luck!

 

Pat

[Marnie]

Great advice.  And I knew that VBFF wasn't quite right, but I couldn't come up with the BIF.  Chemo brain?  No, just old age, I'm afraid!

[sunshineC]

Thanks so much to all of you who have not only responded and given great information and advice, but really made me feel welcome.  I can't tell you how much better it feels for me to know you all exist (well, virtually exist, right?  VBBF? BIF? Both sound GOOD to me!)  I wonder why the doctors and nurses try to pretend all these side effects don't exist?  It's really a disservice to us all.  Yes, I am a whiner, but if you tell me the things I'm experiencing are real and may or may not get better, I can deal with that.  Just don't BS me!  Is that what any of us deserve with what we're going thru already?!  Okay, enough of the soap box (for now anyway).  I was getting a little light-headed and dizzy up there anyway.  Hopefully that will get better too, right? Lol!  

You all seem so big and brave, dealing with so much.  I really hope I don't have too many problems.  I'm afraid I'm not as brave as you all.  I have another bone marrow biopsy coming up in Sept and believe me, I'm definitely not looking forward to it.  The first appt I had with the specialist, I got my diagnosis and the bone marrow biopsy and aspiration (which he tried twice & then gave up on) while I was right there in the office (no where to run!).  It was just one thing after another and I was so sick anyway, you just follow directions and go with whatever.  I told my husband this one's going to be worse cause I know what's coming now.  Ahhh, ignorance is bliss!  So much for that now!!

And thank GOD for you having a great sense of humor!  As much as I do whine, get depressed when another handful of hair drops to the floor after a shower, and frustrated that I'm just not able to do the same things I've done for so many years, I'm afraid I wouldn't fit in at all if there was no humor.  Hey, one last thing - so if I take a shower every other Thursday, I won't lose as much hair, right?? 

Thanks again.