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Battling Depression, Trying to stay hopeful and grateful

Hi everyone.  I feel lame coming to the forum with what can be perceived as minor concerns but after a call with my oncologist yesterday I’m just feeling low, like really low, like hit by a truck low.  I was diagnosed one year ago and have been on this journey of balancing immunosuppression and therapeutic dosing of dasatinib since then.  I’m currently on 50mg and still very low WBC for the entire year.  I’ve been around .8 neutrophils for the majority of the time in fact.   I feel ok -haven’t been sick and my PCR is SLOWLY moving downward, currently .3 from .8 in August.  Here is the thing...my liver function results are slowly rising as well, borderline over normal now at 55 which Dr just wants to keep an eye on.  
 

Shouldnt my PCR be lower by now? What happens if my liver cannot handle the stress?
I didn’t get a great feeling from speaking with my Dr and normally he’s pretty upbeat.   
 

Maybe the isolation of Covid is getting to me or the fact that I turn 50 next week and I had greater expectations for my last PCR results but I am so worried that my 3 daughters will grow up without a mom and this is all starting to really get me down.  

Hi

I'm 13 years in now and some of this is very familiar. I have had a very low WBC for over 30 years - my CML was diagnosed (aged 50 in 2007) after I moved house and changed GP and their "benchmark" blood test gave a high normal WBC. I was put on 400mg imatinib which depressed my WBC even more - I got to neutrophils at 0.4, and was stuck around BCR-ABL 0.5% for 6-9 months. Then all of a sudden 0.02% then 0.005% 3 months later. In those days we didn't have the guidelines of what you "should" achieve by when, so couldn't get stressed about it.

So I'm still here - my TFR attempt lasted 19 months before the BCR-ABL started to rise 6 months ago and I went back on 400mg imatinib. I'm fine on it - I'm back in MMR and hoping to reduce back to 200mg next year.

I'm not an expert on dasatinib, but there are people on here who find 20mg an adequate maintenance dose once they get to MMR - let's hope you're one of them.

Hope that's useful

Thank you so much!  This was very helpful.  My concern was that with white counts not recovering, how could I really ever hit MMR and what if BCR ABL rises?  I know... so many what ifs aren’t useful but I got nervous after my call with oncologist.  He seemed to imply that counts not recovering and being so immunosuppressed means my CML is a harder case.  That scared me. 
 

so yes, this really helps bc I see that I can be ok even with these low counts!  

 

Thanks! 

I have been on a similar road. Liver function (in my case bilirubin) + worried about the future (kids) + worried about slow moving PCR numbers -> anxiety! There are things you can control and others that you cannot. The ones I tried to control: food and liquids intake adjusted for maximum liver performance (e.g. coffee appears to help, healthy diet on solids, soup for dinner); milk thistle as a supplement for improved liver function; taking the TKIs on time every day; work out (in my case not a lot) and generally just bringing down the overall stress level. You cannot control the PCR level/trend nor the Liver values but if one believes to be actively providing positive inputs then in your mind a sense of cause-effect begins to kick in. It worked in my case. There are two things to note: 1- if this approach doesn’t work there are other TKIs that have less of a liver impact that might (and most certainly) will work given your recent PCR evolution and 2- you are in CCyR, still in your 40s (borderline) and 12 months into this disease, the situation is following a somewhat normal course. Don’t take my word for it, look up post related with PCR levels at 12 months and will find that you are out of the woods.

It is definitely the anxiety that is getting the better of me right now.  Thank you for your kind and honest response.  It reminds me to stay present and control what I can, which is a lot.  I really needed to hear all of this.  And I just poured myself a cup of coffee! 

If it’s any help here’s my BCR journey

2.1% (3 months)

0.7% (6 months) >>>> this should’ve been celebrated but no emphasis on CCYR by doctors

0.334% (12 month) (was pissed off at this point)

0.118% (18 month) (ok getting closer but still pissed off)

0.164% (24 months) (UP and mega pissed off, depressed, fatigued, worried sick, tired all the time, this wasn’t TKI this was psychological)

0.072% (30 months) (MMR!! Overjoyed, happy, wide awake, relieved and a new man)

With all that said celebrate CCYR because it has the same survival benefit as MMR.

You’re so close hang in there! At 12 months you are exactly the same as I was. I hope that offers you some hope. This thing goes slowly for a lot of us, I was starting to loose hope and boom.

Alex x

 

Hi!  Yes, angry and frustrated and anxious today, but hearing your journey helps so much.  Immediately after my zoom call with my Dr I came here to reread your posts for reassurance.  I don’t know what I would do without this site and the awesome people on here.  I probably need to give my onc a break and not expect him to be my cheerleader every time. Thank you so much for this! 

You’re more than welcome. When I joined the forum nearly 3 years ago I dreamt about one day being in this position that I can offer support to others starting out on their tough journey with CML. I’ve said it before but if you let it this thing can consume you. Rejoice at being in CCYR MMR is around the corner and then you can slowly adjust for your lower panels and “if” needed you can switch. You’re going to be fine, I know you won’t believe it yet but that day will come I am sure.

Hope you feel better soon.

Al

Hi. Do you know what your normal WBC was pre CML? I was diagnosed aged 30 as having a very low WBC, but it has really not been an issue. There is now research which shows if people have always had a low count the white cells they do have are generally enough for the job.

This is a good point, but I don’t know.  After three pregnancies I must be able to find this info somewhere.... I’m going to try and find out.  
 

thank you!

Tater - Not lame.  Feeling low is not trivial.  We may not lose all our hair and throw up all the time, but we're still fighting-fighting-fighting with all our might a rotten foe.  And we get tired and discouraged sometimes.  But let's unpack your troubles and see if they loom as large as they seem:

You appear to not be the speediest responder on record, BUT you are not way out there slow either - not by a long shot.  Many of us longtimers didn't get to MMR before two years and have eventually gotten to double-zero-to-the-right land.  Your white count and neutrophil percentage are also shared by many of us.  It can take YEARS to change, and then decide to stay (forever, probably) just at the bottom of the normal range.  No big whup.  The proof is how you feel or if you have trouble throwing off infections.  If you don't, then your immune system numbers are fine for you.  It's true that the docs like to see at least a 1 for the neuts, so just keep an eye on that.  

The liver numbers I'm not capable of commenting on except to say that a good question for your onc is:  what is considered a very high and dangerous number that would get your attention?  It may be much higher than yours.  Still, a good idea to keep an eye on them, and he is.  I know you're not worried about short-term but rather long-term:  what does all this MEAN?  If it is helpful to your psyche, do as much research as you can.  If research freaks you out, leave it alone and trust that you will have time to react, ponder your next move and you have options, should you need to move on from dasatinib.

You will be around to be Mother of the Brides!  When I was at your point, I found psychotherapy (cognitive behavioral) to be extremely helpful.  I found a therapist who had a lot of experience with cancer patients.  The biggest takeaway I got was how to recognize and deal with catastrophic thinking, anxiety, and fear that are cyclical (like every PCR!).  The feelings you describe will, more or less, always be with you just as the CML is BUT!  The degree to which you can control your life - your thinking, actions, decisions, perspective - is key. That's where an even keel, even happiness (yes, remember that?) lies.  When you feel at least a little bit in control, you feel braver to face stuff. 

Covid makes everything harder.  You're a trouper with three kids' education to manage!  Cut yourself some slack to feel down.  Then do something - anything - that you know is good for you (get outside, take a walk, clean a drawer, do four pushups haha, etc) That gives you the FEELING of control, and leads to good things.  

Wow that’s an amazing response I agree 100%... so well put and describes all our fears. Bravo.

Alex

This means so much to me.  Thank you!  Feeling understood is like medicine, and I really appreciate you taking the time to respond and relate.  I was in a low place a few days ago and coming to this forum helped me find perspective.  oncologist is going to watch the liver enzymes but according to the package insert for the meds, a hold isn’t needed until levels reach 250 so much over where I am now.  We will watch and see... 

I cannot thank everyone enough!
 

 

Hia,

I’ve been on dasatinib for about 2 years now. I can’t speak much for results etc, but for me personally I have found that dasatinib has had an effect in general on my mood. I’m not particularly worried about future prognosis, overall I’ve had a good response to the meds, but yet I definitely feel lower daily and go through periods of something similar to depression. I think it’s a side-effect of the pills. I wasn’t able to confirm that with my doctor so I could be completely wrong, but I wonder if that is contributing to how you feel at all?

Alex - Thanks very much!  Tater - Makes me feel good to help.  Brantastic - It's possible.  I know it was a factor for me on imatinib.  The incidence of depression is usually only reported in the depths and fine print of the package insert and doesn't make it into the research papers much.  And the incidence is ridiculously low (like under 1%).  But, yes, it's possible.  Still, not much to do about it but a drug switch to see, and often by that time someone has made other changes (gotten therapy, changed doctors, started a new exercise regimen, etc) that muck up the result.  The key to depression is to recognize it and not accept it as the way things have to be.