25 replies to this topic

[CML.Mom]

Hello there,

I'm hoping someone out there can help us as this forum has been a tremendous resource in the past.

My son switched from Tasigna to  Sprycel in November and while the numbers have improved, his mental status has not. In searching for an answer for this change he ran across this article http://jco.ascopubs..../2/312.full.pdf which he forwarded to me. The symptoms one of the people described matches his symptoms so well "experienced decreased libido, diminished attention span, disorganization of thoughts, and intense feelings of hopelessness, helplessness, and demotivation" that I need some help trying to decide what next to do.

We've been struggling with this for a few weeks even going back to his oncologist (no recommendations) and seeing his regular physician (who precribed paxil - which he started but then stopped after a few days because it made him feel worse). Ordered more blood work to check his hormone levels, looked at thyroid levels, etc.

The initial diagnosis was hard - and joy returned thanks to the drugs. These last few weeks, watching him fumble through life as he tries to figure out what is wrong with him, and seeing him no longer sure of himself, unable to make a decision  hurts my heart so much more.

Any advice that anyone can give would be greatly appreciated.

Sad again CML.mom

[Trey]

This is a complex subject, but it may help to look at the component issues which can be viewed as separate but can also play into the overall mental health of the patient.  There is the category of "brain fog" including diminished attention span, disorganization of thoughts, etc which can cause the patient to experience a decreased ability to function mentally without suffering clinical depression.  The effects on work and everyday life of this brain fog can be difficult to deal with.  Hormone dysfunction can lead to fatigue, resulting in impacts on mental state.  The issue of decreased libido is another which can affect mental state.  There could be a more direct route to clinical depression caused by TKI drugs, possibly hormonal, or possibly otherwise.  All of these issues can come together, along with the the cancer diagnosis itself (loss of confidence about the future) and create the foundation for clinical depression.

The article describes how some have reversed the depression after drug cessation.  That can provide hope that if the disease is brought under control the future might include reduced dosage or drug cessation.  Something worth looking forward to while in the middle of the battle, and future hope is good for mental health. 

You already know this is a difficult issue to deal with.  I would suggest continuing with a complete hormonal testing to see if there are any drug induced deficiencies.  But sometimes the best answers are small steps, little things, every day. 

[crob20]

Agree with Trey. Paxil would not be a good antidepressant in this situation because it can increase those symptoms. Tiredness is a major side effect.

[CML.Mom]

Thank you both. Will share and bring back updates as I have them.

[JPD]

I just got a scrip for 40mg of Prozac.  Ive had issues with obsessive disorder and depression even before the CML, so its not a big surprise that the CML kicked those things into overdrive.  We'll see how the drugs do on me this time.

One word about Paxil - one of the bigger side effects of it is sexual dysfunction... at least it was for me when I tried going on it 10 years ago.  Thats why my doctor switched me to Prozac (ive been off and on with prozac for a few years).  Depression alone can play hell on a persons libido, so it may not be a result of the TKI drugs at all.  Here is hoping its not!

[Taylor]

Has he tried magnesium? The TKIs deplete electrolytes, particularly magnesium, which is very essential to nervous and mental health. And as Americans we are already deficient in magnesium to begin with due to our diet.

I recently started taking some because I've had so much more heart palpitations (extra heartbeats actually), and it has really helped those. However, my mood and tolerance to anxiety has been increased tremendously.

I've always been kind of blah in the mood department since starting the meds, but recently is the first time in a long time I've felt really good at times mentally.

I take these, and I take three a day (basically one per meal). It is cheap and safe so why not give it a shot? http://www.amazon.co...gnesium citrate

Cutting out refined sugars has helped too, I read that sugar really binds magnesium and makes you excrete it.

[CML.Mom]

Magnesium level good at 1.9

[Taylor]

That's a good level but not indicative of what's actually concentrating in the tissues. My potassium and magnesium showed fine, but I started getting afib and PVCs in the heart when they were on the low end of normal. So I had to begin supplementing (potassium is an Rx from cardio).

I'd still give it a shot. It's not harmful and it's a small investment before harder prescriptions.

[CDW]

Hello, it's a while since i posted on here. I've had similar depressive symptoms and had to really try hard to change my outlook. I can't remember how old your son is (mid-teens?), but i was diagnosed at age 32 - still at a time when i thought i was bullet proof. The meds have taken their toll on me and it ended up with me seeing a mental health professional. As a result, the specific things i changed were:

the nurse helped me realise i have a rucksack on my back with CML; that doesn't mean i can't do anything, it just means i can't quite do everything i used to. therefore I needed to focus on the things i could do and get enjoyment from. I have retired some of my more physically demanding hobbies and have since taken up indoor rock climbing -  this really makes me tick, is not too strenuous and it is quite sociable too (sorting out another evil).

I was quite socially withdrawn as i no longer thought i was good enough - i 'simply' had to recalibrate my opinion on what is good enough. this was perhaps the most tricky part; i found interacting with other/new people from outside my previous peer group helped as they had no idea about what i was like before diagnosis and took me at face value.

I was not exercising enough - i made a point of exercising at least 1-2 times a week. anything from a really brisk walk through to gentle gym stuff (cardio, low intensity weights). I think the exercise endorphins and general blood flow really help purge the system (i'm not sure that description would stand Trey's academic scrutiny, but you get my point).

Diet and sunshine - i've tried eating better and I also think sunshine helps immensely with my mood. I realise there's not much you can do about the latter, but make sure you enjoy it when it you can.

there's not much i can do about my mental fog and slowness except try and recognise when my brain is sharpest and when it's at its worst and plan accordingly. When tired my mental acuity is simply awful now, so i ensure i'm not doing anything really important when i know i'm really tired. At least if i can achieve something difficult when i'm at my sharpest it gives me a better sense of achievement - if i do something when tired and it's junk, that definitely brings me down.

I'm so grateful TKIs exist and i can live a somewhat normal life; but it's taken me 3.5 years to come to the realisation that my life can't quite be the same and i need to focus on what i can do and enjoy. I firmly believe the meds and also the psychological effects of knowing you have a malignant dx combine to make a fairly toxic mental combination. Navigating through those and understanding how you can make yourself tick again is half the battle. I appreciate these steps may not do the trick for everyone, but they've certainly helped me.

I hope you can gain something from that experience and I will be buying some magnesium supplements this week (every little helps).

Chris

[LivingWellWithCML]

I second Chris's thoughts on exercise.  I primarily dealt with major anxiety over the first few months of treatment, but I found that daily exercise would really brighten my mood and outlook, and reduce my anxiety to the point that medication was rarely necessary.  As a bonus, it helps with the TKI fatigue.  I know that anxiety isn't the same as depression, but exercise is known to release chemicals in the brain that can help with both conditions.  Consider it as part of the 'treament plan' if possible...

[NotJack?]

I believe that I remember seeing a study that determined that curcumin was as effective as Paxil as an antidepressant.  I had purchased curcumin with Bioperine(black pepper to aid in bioavailability) to take for its apparent positive influence on immune response, antiflocculant properties, and possible future dementia preventative.  (possibly too late for the latter.)  I am still not convinced that it is effective in battling CML because of the flawed MD Anderson study (data good but photos doctored, or both flawed?) and its progeny, but Scuba (Michael) is convinced, and I respect his choice.  (Related thread: http://community.lls...e/155496#155496)   I am currently hovering around MMR, and have been for a year or so.  Who knows, the curcumin might just nudge me past MMR as well, time will tell.  Good luck with the depression,  Jack

[winespritzer]

Dear CML Mom,

I was diagnosed on 1/14/14 and am taking Sprycel. At first I felt elated to be alive and to be withstanding few side effects. My PCR numbers were decreasing and I was making a major effort to eat well. I was tired but assumed it was from the Sprycel.  But soon thereafter, my husband got sick for weeks on end.

My onco advised me not to take the Paxil which the internist had prescribed  - he said I was doing all the right things.  He told me not to 'think' so much, knowing that I am a type AAA!

I've been on the Sprycel for over 3 months and feel really exhausted, cold, and depressed. I rarely accomplish what I used to do, both intellectually and socially. 

Just a week ago I sought the help of a psychologist and also went to the endocrinologist and gastroenterologist.

Bottom lines: getting strategies to cope with the new me; just going to know the naps are vital because  thyroid function is reduced and I cannot increase meds which will affect my osteo;  and going for endoscopy and gall bladder ultrasound.

Below bottom line: forgiving myself for what I cannot manage and trying to get in meditation and little walks.

The blog has helped me so much because friends and relatives give me advice that is well intentioned but really inane. They do not live in the CML world. Perhaps your son can blog on his own.

Winespritzer

[RayT]

Thank you CML.Mom for bringing up this subject!  Thank you's also to CDW (Chris) and Winespritzer for your comments.  I was Dx'd with CML in Mid-January, just finished 3rd month of Gleevec and am waiting for BCR-ABL results from last week's blood draw.  CBC showed some anemia but normal WBC (4.5K.)    That said, I've come to the realization that this Dx has really thrown me for a loop, mentally.  I'm a 31-year Hodgkin's Disease survivor (Stage IIa) who underwent radiation and chemotherapy in the mid-1980s, but that never affected me the way the CML Dx has.  I'm sure it has something to do with the difference of being 22 yrs old and single (then,) versus 54 yrs old with a wife and 10 yr old daughter (now.)  There have been WAAAY too many days during the past 4 months that I've felt like i should just apply for a handicap tag for the car and tour prospective nursing homes.  Other days I have a lot of anger at the world.  In some ways, it was easier with the Hodgkins: "I'll get this treated and then get on with my life."  With CML, I know that the chemotherapy will end only with my death (European studies notwithstanding.) I'm having trouble concentrating on anything other than the CML and even having trouble getting motivated to go to work at a job I've LOVED for 22 years.  I consider myself to have a solid relationship with God, but even that seems to be wavering lately.

Bottom line is that I've finally admitted that even though I'm an "invincible" healthcare care professional, I need to talk with an oncology social worker about how the CML is affecting my mental state and well being.  I have my first appointment with her next week.

On a positive note, the side effects of the Gleevec (fatigue, chills, edema) have been minimal for 2 days now and bright sunshine/warm weather the past 3 days has helped immensely.  I'm hoping this is sign that things will improve...

Ray

[PhilB]

Another vote for exercise in the fresh air.  I had already had episodes like those described before CML and was off work for 6 months at one point.  The addition of the brain fog, low attention span and fatigue that come with the drugs means I find I go downhill very rapidly if I don't get my exercise.  A 10 minute cycle to the railway station is enough to make all the difference, or a brisk walk, a paddle down a river, anything at all really - just as long as I do it most days.  It can be really hard to motivate yourself to do it, and it isn't a guaranteed panacea, but it really can make a big difference.

[winespritzer]

Hi Phil,

Yesterday I walked a mall(to avoid the outdoor pollen)  for 2 miles and am certain it helped me!  I did not miss my usual feeling of exhaustion by 1 pm.  Didn't fall asleep all day until 10 pm.  Somehow I will attempt it today. When I came home I had a cup of milk thistle tea - to offset my liver difficulties.

Thanks,

Winespritzer

[winespritzer]

Hi Ray,

So we have to deal with exhaustion or rising oncogenes since our treatment is forever, we hope. I think, in the beginning we spend a lot of time learning everything possible about what we have and in time the focus will lessen. . . although we'll always have to be on low/high alert for the inevitable side effects. Sorry you've already dealt with Hodgkins. YUK.

I thought perhaps my exhaustion was because I am on Sprycel, not Gleevac.  I feel like everyone else starts on Gleevac and hope my onco did not err when he prescribed Sprycel.  Now I worry that anesthesia for an impending endoscopy might not work right with Sprycel.

Hope you get good results from your PCR.  My 3 month PCR was at .38, so I think the onco said it was  'a something molecular response' . Not sure if he said, 'major' but doubt it. Proves I don't hear right.  In any event, the PCR went down from 20 at 1 month. 

Right now part of my exhaustion and feeling cold is from an underactive thryroid, so I will eat more seaweed salad and maybe oysters at Cape Cod or Hilton Head!  How is your thyroid?

I hope you can keep up with your job because the social part is healthy. Hope you don't have to drive too far. I truly miss working but I am 70 and everyone said it was time to give it up.  I just turned down a  part time offer but it needed 3 hrs. of commuting.  I think you are too young probably to go part time and perhaps your job doesn't lend itself to that.

I am sure it must be tough to be raising a youngster while trying to get through each day and that perhaps your family like mine is getting used to the new person. I doubt they know how they are affecting you.  They probably think you'll be all well very soon.  I sought out the help of a psychologist because I knew that no one could listen to me anymore. My sick spouse just about did me in. The psychologist in just 2 visits has helped me tremendously. I wish the same for you.

Now, I am making a daily 'to do/to eat' list to help me remember. And I also try to start each day with meditation. Yesterday's walking helped me lots. . .I plan on making that part of my afternoon when I usually conk out.

I am a new work in progress, thank God.

Good luck for you and hugs to your family,

Winespritzer (who has chosen living over sipping)

[KerriD]

I take tasigna and have had hormonal issues since I started .... I am on a combo of Wellbutrin and Cymbalta.  They have helped considerably with the depression and brain fog ... I started doing yoga 3 -4 times a week 9 months ago and that has helped more than anything else

I hope that helps....

[winespritzer]

Dear Kerri,

Yoga sounds good. I am not really coordinated or 'well balanced' but would like to learn. Meds sound good also. I'm just avoiding more because I've already had elevated liver and pancreatic enzymes.

Going to try to find a yoga place to add to the walking and meditating.

Happy to report 2 whole days of more energy with no napping - could it be the warmer weather and the back to back walking with the back up of a psychologist? Hope so!

Winespritzer

[CML.Mom]

Virtual hug. Curious about your comment about thyroid function reduced. Where would I find that data? Do you take a thyroid support?

[CML.Mom]

Trey do you know where I can find info on how Sprycel affects the thyroid?, and if  there is an impact some options to counteract the effects. Thanks again