10 replies to this topic

[Anwalz]

Hi everyone--I've posted on here before, but long story short, my fiancé was diagnosed with CML in October, following the death of his best friend (grandfather) and close friend in the 3 months prior. Right after his diagnosis he slipped into a depression, as that is completely understandable. He was doing a lot better for quite some time, but has now slipped again -- as the depression goes in waves. His antidepressants are being upped, he's continuing counseling and will be seeing a psychiatrist in April (as this was the earliest opening). It's been an incredibly tough battle and I just feel so helpless for him, as right now he just wants to feel happy and be happy on our wedding day (August 12th), if he isn't feeling better (depression wise) by then, he wants to postpone (which is incredibly difficult because I know this is the depression that is making him see everything as dark and scary). I'm wondering if any of you have experienced psychological issues as a result taking medication for CML? He's currently on Gleevec. How did you cope with your diagnosis? Any tips on how to help him through this or things that can be done? Thank you!

[gerry]

Are you able to get him to join this forum. Being able to talk to others in the same situation, plus getting a better understanding help.

[kat73]

Anwalz - Yes, yes, and yes.  My first two years were on Gleevec, and I never had a good day from the first pill.  Depression is not listed in the Top Ten of side effects, but if you look at the fine print, it's in there - something like 1-2%.  I had a terrible time trying to tease apart the conundrum of why I felt such bleak despair - was it from the Gleevec?  or was it from trying emotionally to come to terms with having CML?  I finally came down on the side of it being mostly the Gleevec, but it might have happened on any of the other TKI's as well.  By that I mean, I think they all do a tapdance on all your cells and systems - everything is whipsawed in your body and you feel . . . different.  Also, mostly you feel BAD.  That takes a toll on your spirits (to always feel sick) especially when you are looking at taking the durn things forever.  Fatigue is a very, very common side effect of all the TKI's, and fatigue breeds depression (and vice versa.)  Also, people tend to look bad on Gleevec - the puffiness of the upper lids and the bags under the eyes make you look pretty sick.  On TKI's people get very pale, because the melanocytes (that make pigment) are inhibited right along with the bad boys we want to kill.  The frustration from not being able to do what you did before makes you begin to doubt your worth and identity - all that leads to depression.

 

So, I would say you and he are doing all the right things - counseling, antidepressants.  Everyone has to find his own way, but what helped me was cognitive behavior/talk therapy (it helped me learn how to check my thoughts for perspective, among many other things), time, and knowledge (as in Trey's blog and here on this forum.)  I worked through the existential stuff - ya know, death - which, fortunately, isn't so much on the table for CML as it used to be, so there's hope - hope is definitely something he needs.  I began to learn how to be happy with a different life from the one I had before.  I know that sounds grim, but it's a gift in a way.  Distilling what really matters in life is much better done early rather than late!  But most of us go rushing around avoiding thinking about it much until maybe it's a little late in the game.  I began to feel physically and look a whole lot better on a drug change - to Sprycel - but as the saying goes, his mileage may vary.  But time is probably the biggest factor in getting out from under depression.  I never took an antidepressant, but I wouldn't rule it out.  It's just that I think CML is a much bigger psychological burden than it seems on the surface like it ought to be.  The ramifications continue to spin out over years and can fill your head as much as you allow it in.  He needs to fill his head with everything he can learn about CML and the various studies going on and give himself a lot - a LOT - of time to ponder it all and feel his feelings all the way out.  The fact that he's getting guidance on that is great.  What you do is give him a listener and, of course, love.  He should be all right.  As he begins to get on top of CML and his numbers start looking good, then better, then best - that really helps the spirits as well.  

 

As to the wedding, hmm.  I'm of two minds.  One is, don't postpone - he's going to be all right by then.  But then I also wonder if that isn't a whole lot of inner pressure for him - to "be happy" - for the big day.  It might work better if you decided right now to open-end the wedding - just take it right off the calendar (this may be difficult or impossible, I know) and tell him, whenever you feel up to it, I'll be right here.  This is entirely your call - just a thought.  One last thing - I was struck by your saying he "just wants to be happy."  I remember getting to the absolute breaking point of depression and saying out loud - "I just want to be happy again.  I just want to feel happiness."  For me, that was sort of the beginning of the road up and out of the hole.  So, a good sign, yes?

[Trey]

A very difficult situation.  It would relieve pressure from him to let him make the decision when he is ready and tell him you would support his decision.  Otherwise there is no right answer.

[Peanut]

I've been lurking on this board for a few months. I never felt compelled to join or comment until now. I don't have CML, my son-law does. He was diagnosed July 2015, 7 weeks before their wedding. Had to wait 2 more weeks before he saw the onc, got his bmb and started Sprycel. It now 5 weeks before the wedding, beyond the point of no return, with everything paid for, and invitations sent. We did offer to postpone the wedding, but he didn't want to. Those were a rough few weeks physically for him, but he throw himself into wedding plans, wanted things to go as planned, and went to all the parties. He said the wedding is what got him through the dark times. He needed something to keep him from thinking about cml all the time (hard not to with all the dr appts). The wedding was a very fun, casual affair. They even got to go on their honeymoon ( dr wouldn't give go ahead until his blood work came back 3 days before the wedding).

I guess what I'm trying to say is maybe the wedding can give your fiancé something to look forward too. It will be a happy day and a reason to celebrate. Keep it casual. My daughter said his onc was a great help in reassuring them they would be married for a very long time. Your fiancé has had a lot of loss in a short time, some depression is understandable and he his looking for the help he needs. I hope he starts feeling better soon and you have your wedding and a long and happy marriage. Like my daughter, you are a strong person.

[tiredblood]

I think school is what helped me get through my initial diagnosis and treatment. I didn't have time for my mind to dwell on the CML and whether the TKI would work. Thankfully I had already paid the tuition or I would have postponed school and probably would have never gone. Focusing on my studies got my mind off the CML and I feel, sort of empowered me to face it.

[Gail's]

I agree with the comments of others. Would like to add that the cancer support group was a huge help to me for several months after diagnosis. I see a counselor as well but have nothing but good things to say about the cancer support group. Cancer can make you feel like you don't fit in anywhere and sitting in a group with a variety of cancers was good for me. Found out I'm sadly not alone on this awful journey. My friends and family have been great, but there's nothing like the validation you get from someone who has experienced what you're feeling and going thru.

[Judithb]

i am still struggling with depression  6 months after CML diagnosis.  I tried antidepressants.  They just make me sicker than Gleevec does, so I stopped. Having a very few good friends and family to talk to helps as does, and I know thia sounds trite, but trying to be grateful for what i do have and not what has been taken away--my old life.  My new one is not the one I wold have chosen, with its fatigue and unexpected GI issues at the worst times, but neither am I actively dying or undergoing vicious chemo therapy or radiation.  Having something I care about doing also helps.  Last semester when I was teaching there were hours and significant parts of days preparing and lecturing and grading papers that I truly did not even think about the disease.  Even though I am off this semester, I am preparing for and looking forward to fall to begin again.

For me: I have to practice the discipline of gratitude.  It does not always come easily.  a little pinot noir helps, too.

[r06ue1]

The only time I get depressed is when I read or watch the news, but instead of doing nothing about it, I work to educate others in a way to fix the problems that we are faced with.  The events in the media just remind me of how I need to work harder as there is too much to be done.  I don't do this for me, I won't live to see those changes in all likelihood, but I do it for my daughter and future generations.  

 

If you are feeling depressed, watch the below video, it sort of puts things into perspective.  
 
https://www.youtube....h?v=udAL48P5NJU

 

Spoiler

That is just one portion of one galaxy and there are billions of galaxies in the universe. Those little specs that look like dust are stars, each with many planets around them. The reason that everything right around 2:45 in the video looks so bright is because you've reached the galactic core and the stars are so densely packed that it appears you are looking at our star, the Sun.  

When you think about your problems, just remember how small and insignificant they really are in comparison to the cosmos.  Our lives don't even register on its scale of vastness and the time it has been around.  

 

And for those that are curious, I'm a Pantheist and this video sort of describes the reason why though I've been one for much, much longer than the time when this came out.

 

 

Spoiler

As an edit, just in case that made you feel too small and too insignificant, remember this: In all of the vastness of time and space which is our cosmos, there has never been nor will there ever be another you. You are unique and that makes you very beautiful and worth more than all of the diamonds and gold in the universe.

[kat73]

r06ue1 - very cool!

 

JudithB - "practice the discipline of gratitude" - great phrase and concept - will remember it.

[SandyG353]

Even though being in molecular remission, my daughter has had periods of depression.  I contacted Dr. Druker who told me that the best drug for this that does not interfere with Gleevec is Lexepro.   My daughter filled the prescription, but refused to feel that she needed mediation.  She goes to the gym after a full day's work and in between picking up my grandson at aftercare.  She says that the gym helps her with depression.

Sandy