8 replies to this topic

[9miler]

I am new here, but wondering if anyone has issues with depression while taking Gleevec. I have a family and personal history with depression anyway, but since starting Gleevec, I have anemia-based fatigue and significant depression/anxiety. I  know it is a reported side effect, but I haven't run into anyone with CML that has depression. Is it just me?

[Tedsey]

Dear  9miler,

I have also had a personal and family history with depression.  After a few years in therapy and finally agreeing to anti-depressants, the fog started to clear.  I was actually conscious that I was very happy for 5 whole years.  Then, CML hit.  It was like going back to square one again (and what I thought was my very clever joke just after diagnosis was: Most people say, "Why me?" after they are diagnosed.  I said, "It figures.").  Talk about an unwanted visit from an old friend.  Before, I wanted to kill myself and I had it all planned (very easy).  After being happy, all I wanted to do was live.  The CML thing was a total nightmare (understatement of the millennium).  Now, I have resumed cognitive-behavioral therapy and take my happy pills.  I am resigned that I will always struggle with depression and anxiety, but I can control it to some extent.  I still get anxiety attacks that seem to come out of nowhere.  It really sucks.  And still, I find that I have many reasons to be happy--talk about a paradox.  Now I am desperate to stay alive (very hard--esp. when you have a disease you have no control over).

I used to suffer from severe anemia on Gleevec.  I needed blood transfusions and these horribly painful and risky shots.  And since my body rejects other people's blood, I almost died on my first transfusion.  Good times...  Anyway, did not help much with the depression and anxiety.  I am not sure if your anemia keeps you from doing your usual activities, bit I couldn't walk across the room without my heart pounding through my chest.  I also had much trouble breathing.  It sucked.  Add that to the anxiety and depression mix...  Now, little victories have become my source of joy.  I know, it is not fair that others will grow old, retire, see their grandkids and never give it a second thought.  But life is never as easy as that.  And there would be something essentially missing from a life if it were.  So, it was either be happy for what I had and what I could still do, or throw myself off the roof--but I probably couldn't have made it up there anyway.  I was thrilled last Dec. to become CCyR after 1 year on two meds (I had horrible anemia and a sub-optimal response to G, so I was switched to Sprycel--it really helped the anemia--another joy).

For some strange reason, I was so sure that my last PCR would come out MMR.  Sprycel seemed to be bringing many discussion board members to MMR and quickly.  I was sure it was going to happen to me too.  BTW, this is not how I usually think.  I am usually of the gloom and doom mind set--an old life habit of mine.  Anyway, when I got the news that it was higher, it felt really bad.  However, as I thought about it, it didn't feel any worse than in the past where I was sure the outcome would be bad.  So, I figured, if I could think the best and it doesn't make me vulnerable to feeling worse when I get the bad news (if I get it), then why the heck not expect the best?  At least I would have a few moments (days, weeks, months) to feel happy and not so scared while I wait.  This CML waiting game is enough to make you crazy.  Tests cannot come in soon enough and neither can interpretations.  We also cannot get lower PCR numbers or MMR fast enough.  The negative could be never-ending.

So, how do we live with all this and attain some semblance of a happy life?  I wish I had an answer for you.  I am not sure yet.  I suppose it is having something to live for.  I have my kids.  I have this board and my BIFs (Best Imaginary Friends, as a member's wife so hilariously called us).  I am sure you must have people and things you love in life.  But I also know how depression can make them feel so insignificant.  I totally get it.

And you will find you are NOT the only one with CML that has depression and anxiety.  I am sure others will chime in if they haven't beat me to it already.

Please take care.  I am here for you if you ever need to talk.

Tedsey

[Taylor]

I've experienced a lot of anxiety since diagnosis and a few moments of depressive feelings.  I'm not sure if it is just the diagnosis and my busy year, the medicine, or both.  I've had a few moments of anxiety in my life but they would last just a week or two (come out of no where), but I've been dealing with problems since April and am now starting to come out of it.

Speaking of CBT, have either of you tried TEA forms?  It stands for thought-error-analysis.  I started this I believe at the first of this month and they have already really helped me.  Just a suggestion, I can give you more info if you'd like.

Taylor

[PhilB]

It's definitely not just you.  A huge percentage of the people on these boards seem to be on antidepressants.  The average CML're ratlles if you shake them.  What's not always so clear is what's causing people to be depressed.  It may be the Gleevec, or it may just be living with the knowledge of the disease and obsessing about your own mortality.  Or it may be from watching Trey try to do maths.  It's probably a combination in most cases.

Hang in there, most people do seem to get better over time - as the saying goes you can get used to hanging if you hang long enough.

All the best

Phil

[LivingWellWithCML]

I can definitely relate to the anxiety side of CML (!), but I don't believe it's directly caused by Gleevec in my case ... it's just dealing with the fact that I have this disease in my early 40's and that I was (supposedly) perfectly healthy, very fit (long distance runner), ate well, etc. I was actually diagnosed the afternoon after running a morning road race! I am 6 months post-dx and am doing much better emotionally, but I lost a ton of weight over the first 6 weeks - and it was likely due to the anxiety. Unexplainable weight loss coupled with a big appetite is pretty scary stuff, especially for a guy who was already thin to begin with!  It was a vicious cycle for me in the beginning ... weight loss, anxiety about losing weight for no good reason, which resulted in more weight loss, then repeat. Ugh.

Another long-time CML survivor recommended Rescue Remedy to me - which is a natural stress relieving spray that you can buy at your local health foods store. I use it from time to time, and although it's very subtle, it does seem to help when CML consumes my mind. Another thing that works for me is exercise ... I feel like regular workouts release chemicals that calm my body and my mind. Running, swimming, biking, basketball, weights - the whole deal. It's also one way to fight the Gleevec anemia. My hemoglobin/RBC's on the low end, but my fitness level is at an all-time high despite the anemia. I've told others this, but the first mile or so of running is always pretty tough, but I grind through it and my body eventually settles in ... and I feel really good afterward!  Find what works for you and make a routine ... even a brisk walk can help clear the mind and help deal with Gleevec anemia.

Hope this helps -

[9miler]

THANK YOU so much to everyone who replied. I think I just need to work some more on acceptance. When you get most of your identity from what you do for a living, it is tough to find out who you really are when work is ripped away. I am on anti-depressants, am having my amenia monitored by my oncologist, and continually try to focus on exercise. After being a long-distance runner most of my life, I can't believe how hard it is to get out and walk my dog these days. I have attempteed suicide 3 times (luckily I was a failure at that!) and don't want to go that route again. I will try volunteering in the community to try to work on my self-esteem. Thank you all for your wonderful replies and supportive words. 9

[simone4]

9miler, your last post made me cry. I am sorry you have felt so

sad that you have attempted suicide. I have maybe "heard" those

words but to actually "read" those words was heartbreaking as well

as profound.  I wish I could say something to help, but alot of days

alot of us feel the difficulity of just putting one foot in front of the other.

You mentioned your dogs, what kind are they?  I live among cats

now, but back home in France I had border collies. One was given

my papa for saving a neighbors's life. He gave me one of his puppies

and he lived for 13 years.  My best friend.  I hope your animals give

you comfort.

All I can say is that music has pulled me out of the darkest of holes.

I hope you find some relief in it as well.

Take care and come back.

Simone

[lala]

Hi....I love Simone's reply.  I, too, was sad when I read your post.  My brother ended his life....so very sad.......I hope you will continue your fight.  It is hard ---  I like your work in the community idea...I know how on a bad day, if I get among the living (my Mom's old phrase!), I always feel better!  I teach so my students FILL me with joy!  Also, at the beginning of cml, it is hard to walk the dogs.....I was couch bound for a very long time.  It does get better.  Many of us have found the side effects seem to cycle......lots to learn from all these great people on this site.  Welcome!  -Lala from Chicago

[9miler]

My new dog is an AUstralian Shephard named Hutch. He likes to be very active and is very smart--he learns ANYTHING quickly. I got him in part to help me out of my depression, but truth be told, when it is hitting hard, I can't even get out of bed to walk him. I am doing better right now--my typically low hemoglobin is a bit higher (10 or 11) so I feel more energetic. I had been on a depression post for a long time--primarily to share songs with folks in similar situations. I agree with you, Simone, music really has a huge impact. That too, though, goes away when the depression sets in. But when I am nto way down in the dumps, I play music all day long. I love trading songs. Here's one I play when I am in between up and down:  http://www.youtube.c...h?v=y7BOr-h95FE

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