16 replies to this topic

[Judy2]

Hi Everyone,

I have been feeling anxious lately. Now I am an anxious person to begin with and I know I have a lot on my mind but this feels different to me, this is not connected to any worrisome thoughts, it feels purely physical. I feel sort of hyper, I can't seem to settle. I did not have this feeling on Gleevec or Tasigna although I was probably not on Tasigna long enough to tell. Years ago I tried "Sleepy Time" herbal tea and this is a similar feeling to that except that that was worse. I know then, that the tea was the problem because I experimented with it and when I stopped drinking the tea the feeling went away and when I drank the tea the feeling came back. Unfortunately, I cannot experiment with Sprycel in my LABORATORY. This is a very uncomfortable feeling!!! I was wondering if any of you guys had similar feelings on Sprycel? I know not everythng is connected to our CML or our meds but still, somehow, I can't help but wonder about this and believe me whan I tell you the last thing I need is for Sprycel to make me anxious. Thanks for any help.

Judy

[Judy2]

Hi Billie,

First,  WELCOME HOME !!! Are you glad to be in your own cozy house ? Second of all, you are hysterical. I  could not stop laughing after I read your reply to me  If I were Pam Martin I would be spitting cherry coke all over my monitor right about now.. Seriously, though, an edgy feeling is a good way to describe what is going on with me. I am pretty positive it is the Sprycel that is causing it and yes I do have Xanax in the house. I am driving myself crazy over all this stuff, so much so that if I have a day when the side effects are not that bad I then worry that the Sprycel isn't working. I can not get out of my own way!!! I do have to say my onc takes all my side effects seriously, I am lucky like that. The other thing that is happening to me is I am now getting very dry eyes. Billie, I'll trade you one dry eye, and  one day of shingles for the hole in your cheek. Is it a deal? (I'm not afraid of drowning in my own drool, I love to swim). Thank you Billie, you always make me laugh and cheer me up.

xo,

Judy Judy Judy

[pammartin]

Welcome home Billie! 

[Tedsey]

Dear Judy,

Anxiety is such a crazy thing.  I am not saying that it is not the Sprycel.  There has been some talk here about feeling anxious on some of the TKIs.  I am on Sprycel and also an extremely anxious person.  Sometimes I get the same thing as you.  It just seems to come out of nowhere and for no apparent reason (and I have been dx for a little over 2yrs and on Sprycel around 18mos).  But I have not noticed a "different" kind of anxiety since starting Sprycel.  What I did notice is that after getting my depression and anxiety under very good control, having a baby and CML brought me back to ground zero.  I am working on it all over again with drug therapy and cognitive behavior therapy (talking to a psychologist).  Right now, I cannot imagine ever getting off the drugs.  But I am becoming OK with that.  I am just too scarred and traumatized by the events in my past and CML to even think that  Nevertheless, you are a different person.  You know your body.  I just find that with anxiety, it is not always conscious.  Sometimes, when I am just going through my daily routine, or even during a good time, it strikes.  My therapist says this not uncommon.  If I remember correctly, your CML dx is still pretty recent.  It takes a while to get your emotions back to a somewhat normal state.  It took me a little over year, and I still have flare ups.  Nevertheless, my depression is pretty much gone.  I wish you well.  And I really feel for you.  I understand how uncomfortable this feels.

Take care,

Teds

[pammartin]

Judy,

How funny, I was just thinking as I was reading Billie's post, it's good thing I am not drinking anything.  Well, you know, I mean I wish I was drinking something, but not when I read Billie's posts.  I believe the Sprycel could be causing a bit of anxiety, I have had similar experiences since taking the drug also.  It is a different type of feeling, I have had panic attacks, and this feeling is nothing like that.  Hopefully this side effect will also lesson after a time on the drug.  You are going on your 5th week now, I think?  It took about two weeks for the major effects of the 140 mg to lessen, I was disenchanted on how long it took for me to start feeling better on the 100 mg.  Hope you get a good nights sleep!

Pam

[Judy2]

Hi Pam M.,

It's been 6½ weeks since I started Sprycel but whose counting. I've now developed dry eyes. Have you had this side effect? Are you saying that at a lower dose it took longer for the side effects to diminish? Plus, does it seem strange that a side effect would take 6 weeks to develop after starting the med? Wouldn't you think all side effects would occur within the first two weeks?

Hoping your hall oven becomes a wall oven this weekend.

Judy

[pammartin]

Hi Judy,

I mentioned the time frame because it took several weeks for the side effects of the 140 mg Sprycel to begin.  I even posted I was surprised, I thought I would have an immediate reaction when raising the dose.  I would have to go back and look at the posts, but off the top of my head I was on the 140 mg about 8 weeks before it really started to hit me hard.  Some would say it was not the med, but in reverse, since I have been off the 140 mg for a month, I am finally beginning to have energy again, my face has cleared up in the past few weeks, (completely), and my hair has started to peach fuzz in again in the thin spots.  I might not have explained correctly what I was saying in the previous post, I am not convinced all side effects reveal themselves immediately, and I am also unconvinced they are consistent in revealing themselves in any order or fashion.  I feel badly, I am sure it isn't what you wanted to hear, but I hold fast with the concept the side effects diminish as the body adjusts and if they return, even my Sprycel headaches, they are not as bad and do not last very long.  Hopefully this is yet another gremlin that will not last long.  As to the dry eyes, I have always had problems with this, I wear contacts and my eyes will dry out and a light wind can take the lens from my eye.  I have not noticed any additional drying, but maybe because I already have this disorder before the Sprycel.  I use an over the counter eye drop and my contacts are a high grade that are made for dry eyes, but even with those if I have them in over 10 hours they dry up and float around my eye. 

The hall oven is becoming semi famous, I am not sure I want it installed anymore, right now I use the excuse I do not like the convection oven and I dislike food cooked in the microwave.  If we actually install the oven, my cushy days of cooking in the crock pot or stove top will end and once again I will have no excuse not to prepare meals. 

Take care

Pam

[Judy2]

Hi Teds,

Thanks for replying, you are always so compassionate. I am glad your depression is pretty much gone and hopefully your anxiety is getting better also. I am so sorry that you have been traumatized by the events in your past. Teds, if you ever want to talk just private message me. I am here if  you need me.  I know that I have underlying anxiety issues but I do think Sprycel has added an extra edge to things. I was dx 10 months ago but did not have this feeling on Gleevec or Tasigna which leads me to believe it is the Sprycel. Also, my eyes are becoming very dry. Have you had this problem? Thanks again Teds,

Judy

[pammartin]

Wow, didn't realize how much I missed Billie's posts until she is back again!  Next year I forbid you to go to Florida unless you promise to post a new story at least twice a week.  Billie, I would be looking into my history also, I have lived with rumors my entire life I am not the product of my parents union, one of the reasons why I probably do not have a donor match in my family.  I went on a search, it was nothing as interesting as yours, of course that being said, I probably just slammed my biological parent, anyway, singing with Mel, Frank, and skeletons, I can't wait to discover the juicy details!  I am once again considering a new look in doctors, because I am responding, it seemed unnecessary to go further, but I am rethinking my initial rethinking, if that makes any sense.  I need drug out of the wilderness, I washed/dried/folded 9 loads of laundry today and I had only one outfit of clothing, the rest were pajamas, that is what I did all week, shower and don clean pajamas.  I need motivated, so Billie, come drag away, I will put the rope on the porch.  I do feel badly you misplaced your panties, but all I can say is, it happens to the best of us.  Judy, we need to get that story about Billie's ass and Pittsburgh, I promise not to have cherry coke while reading. 

[Judy2]

Hi Pam and Billie,

Pam, I was afraid that the side effects would keep showing up but hopefully they will diminsh over time. I had ocular rosacea years ago and my eyes were unbearably dry. They had been fine for the last 18 years and I just don't want to go through that again but I guess I will have to start using eye drops. I think I have more medicine in my house than my local CVS.

Billie,  I think Pam is doing really well now with her CML, I think she is well on her way. Also,you don't want to know about Shingles, my poor thigh was a mess!!!

I can't believe your father and my mother were both on Broadway (my mother was on Broadway in about 1945). Your father was a singer and my mother was a dancer, together they were talented. I'm ready for you, Pammie and I to go on our quest. Pam travels light, I travel heavy and you travel without underwear. What a team!!!

Judy Judy Judy

[Skittles]

Billie, I don't post often but do read the posts everyday and I have to thank you for the laughs!!  You are so funny and we need a dose of 'Billie' from time to time.  It certainly makes life easier.  Thanks for the laughs!  Hugs, Skittles

[pammartin]

BIllie if you keep writing stories I am not only going to have to give up my precious cherry coke, I am also going to have to start wearing depends so I don't pee my pants while I am laughing!

[Tedsey]

I'm sorry Judy.  You are so sweet.  I didn't mean to blab about myself.  It is your post and it is about you.  I thought explaining my experience with anxiety may help you sort out yours (if your situation was in any way similar).  I cannot tell which came first the chicken or the egg.  And it would be strange if we didn't feel any intense anxiety being diagnosed with an incurable cancer (although hopefully completely controllable).  So, is it life, or is it Sprycel?  What a headache.   Despite what causes the anxiety, it is the pits.  I hope you are feeling better.  BTW, I get dry eyes from time to time.  Allergies, or Sprycel.  Ahhhhhhhhh!

Take care,

Teds

[Judy2]

Hi Teds,

Blab away, I don't consider this just my discussion, it is everyones. If I start a discussion and it gets people to talking about their own experiences than it makes my discussion more valuable. I feel so much better if I can help other people and other peoples insights also help me to solve my problems. It is a win win situation. As for the anxiety, well, I just feel sort of jittery, it is not horrible though and if the Sprycel ends up working than I will learn to live with it. Thanks, Teds, I appreciate your concern.

Hugs,

Judy