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Diagnosed with CML - feeling overwhelmed

Hello,

I hope you don't mind a post about feeling scared.  

I was diagnosed in December last year and started Imatinib about 7 weeks ago.  Up to now, I have felt fine. Not many side effects etc.  But I think the diagnosis has just hit me.  I feel overwhelmed by it.  I'm scared and feeling so shaky.  Did anyone else go through this?

My Dr is good - he tells me that CML can be relatively well controlled but it will almost certainly stay with me for the rest of my life - which I now find terrifying.

I'm sorry for the meaningless rant but this feeling started yesterday and I cannot shake it off. 

Would be grateful for any reassurance right now :-(

Thanks

R

HI Rae,

I was diagnosed last year also. It's perfectly normal to fell overwhelmed, sad, having been dealt this card can seem very unfair and tragic. All of us sent a first post asking for reassurance on this wonderful forum. Mine was very melodramatic hahaha  It took me a few months to adjust and deal with the news properly. This website has people that have had CML for decades and are very healthy, they met partners, conceived , got older, and advanced their carreers if you care for that sort of thing. On this forum people like to say you'll probably die from something else.

Take as much time as you need  to process this. I personnaly think that CML will likely hurt more psychologically than physically, your ability to live despite knowing you have cancer will decide your quality of life. I'm at the point where I understand and accept that I'm no worse off than a diabetic patient that has to take a medication everyday to control his condition.  I can  now spend a whole 24h without thinking about it. Still a process tough . You'll get there as  humans we are very adaptive. 

Hang in there!

Thank you Zaccar

I've spent some time reading the forum and everyone's shared experiences - this is an excellent resource.  I really do appreciate your response and for taking the time to pass on some reassurance to me.  I can see that it's going to be a bumpy ride for the first couple of years - and I hate blood tests! haha

Thanks again,

Rae

 

Hi Rae,

Allow yourself to feel scared- it's normal to feel like this especially so early on from your diagnosis. You are really at an early stage and one thing that helped me when I was first diagnosed was to share my feelings with others - mainly via online forums like this. That was in 1999, and I am still here and still doing well. My diagnosis changed my (and my families) life certainly, but we humans are survivors, we just need to reach out and ask for help.... you can do that here.

Sandy

Thank you Sandy - I really appreciate your insight.  It really is helpful to know that there is life beyond the initial diagnosis.  

I appreciate this website forum more than I can say - it has been a tremendous help already.

Thanks again

R

 

Just a thought here.  You sound a lot like me, back when I started Gleevec (imatinib).  The shakiness, sadness, fear, general not-greatness.  I, too, looked to an emotional answer, as did my then-onc.  With the perspective of a LOT of time (this was in 2009) and experience, a different doctor and drug, I just want to posit that it might just be the imatinib.  There is an extremely small risk of depression on imatinib, but it happened to me, most definitely.  I gave Gleevec the old college try for 2 years and I never had a happy moment from the first pill.  I was driven to psychotherapy, which among other helpful things, gave me the perspective necessary to change doctors and drugs.  When I switched to Sprycel, not all my troubles were over, but just about!  The clinical depression lifted and stayed away.  I was no longer physically miserable.  I'm not telling you to switch meds or doctors, and there are MANY people who have had the exact OPPOSITE experience with imatinib and dasatinib.  I'm just giving you a possible.  It's just that your post sounded like I could have written it c.2009-10.

Hi Rae, as Kat73 said, it may be Imatinib related, but consider the following: 

When you say the diagnosis hit you it sounds your mind has learned a new stimulus, a negative one, and got attached to it. Take a look at the concept of Learned Helplessness:

"When people feel that they have no control over their situation, they may begin to behave in a helpless manner. This inaction can lead people to overlook opportunities for relief or change."

The danger of learned helplessness is when you crave the negative stimulus. It is a stimulus nonetheless.

There is a movie called Memento, by Christopher Nolan, where the main character doesn't want closure to his suffering because he likes the stimulus it brings. You might like this movie if you haven't watched it already.

There is also a quote that can be applied to this situation, unrelated to the above:

"Life is 10% what happens to you and 90% how you react to it."

Best,

Kat - Israel - thank you both very much for responding!

I am feeling a lot better since I posted.  I think it was more delayed reaction to my diagnosis in December.  But I will be 'aware' of how I'm feeling.  I'm generally an optimistic person and don't easily get depressed.  So I do notice when I feel low.

Since posting I've returned to feeling fairly good.  Physically, the only issues I've noticed so far is a slight thinning of my hair (a bit subjective but it feels thinner) and some intermittent stomach upsets.  But nothing major. In a away I'm feeling quite lucky (*touches wood for luck*)

I've started taking Vitamin D again, Vitamin C, Curcumin and Selenium.  Hoping these will help too.

Pretty sure I'm going to "fail" on imatinib (was only at 75% on my first test, taken about 6 weeks after I started) so preparing myself for a switch in maybe June or July.  But I'm feeling relaxed about it.  My Doctor seems relaxed about it too - according to him its still a downward trend...so no point in stressing myself further at this stage!

Thank you both - I appreciate your words very much indeed!

R

 

It will definitely take time to process everything and I try to avoid using the word “should” as in “I should be feeling better about things”.  Sometimes you have to process through the negative scary feelings a bit before you can fully start to climb out the other side.  No need to feel shame about those negative feelings.  

It does get easier!! The first 6 months I thought about CML all the time, I was 32 with two young daughters at home and it scared me.  However, as the years go buy I promise you will think about it less and less and your outlook will be better!!  

The unfortunate nature of this disease is that we live with it and because it doesn’t go away we learn how to live with fear that can come and go at will. I really do think it makes us stronger and more compassionate people.  You will have so many great days and than a bad day will come out of nowhere and discourage you but just give yourself some grace that you will have a good day again.  

I’ve been on imatinib since 2015, My numbers took a while to drop too but I eventually got to MMR so be patient, your doctor is right that it’s good news that it’s dropping :)

Glad you're feeling better.  It is the experience of many of us that the initial horribleness does indeed wear off and our bodies adjust.  Hope you're over the hump. 

I just had to add a note - don't write imatinib off as a failure quite yet - an astounding number of us oldsters didn't get to MMR at TWO years, and yet went on to double zeroes to the right of the decimal point.  In the old days, they didn't even have 12 months as a benchmark!  I have watched with worry over the years as an emotional shift toward TFR being the goal has occurred.  Anything less feels like a failure and treatment is all seen in that perspective, with a lot of flitting from drug to drug and anxiety over teeny tiny PCR changes.  TFR is great and I'm glad research is ongoing, but the fact remains today exactly where it always did:  only about half of those eligible (which is about 25% of CMLers, still, I think) will achieve a durable TFR.  It's fine to take the risk, don't get me wrong.  But after the early years of being so very unhappy, there is more often a period of peace and quiet that settles in for a lot of us, where we don't think about CML 24/7 anymore.  My worry is that an unnecessary goal takes over life and can spoil it.  Before everybody piles on here, let me say I am just expressing my own view!  I have spoken my two cents and will retreat into the background now - lol.

Hi Kat, don't retreat into the background yet..., your answer is well said and spot on.

I hope you have helped Rae to put things into perspective.

pigeon.

Kat/Pianogrl44

Thank you both for your words. I appreciate everything you've said.

As a newbie at this, I obviously don't want to keep re-hashing the same questions that I'm sure everyone asks, but sometimes the nerves take over.  So your kindness in taking the time to share your experience is so genuinely welcome.  Your posts help me immeasurably. 

I had a written report from my Dr today.  He re-iterated that it is too soon to think about changing from Imatinib and that I'll have another test in around 5-6 weeks.  I think I have bone 'scarring' - a form of fibrosis - which he said isn't common but he has seen it before.  This may mean I will take longer to get to MMR etc. or that I may need to try another TKI in the future.  Time will tell. But he seems to be fairly relaxed and treating everything as 'routine' (I guess for him it is!) 

I have good days and bad days - still getting used to stomach upsets and dry skin and dry eyes. I get hot and cold 'flushes' when I get a bit stressed but they are very quick so don't bother me too much.  However I think I'd rather take the Imatinib for as long as I can, as I am hoping the side effects will reduce over time.  I'm sure I'll be a turtle.

I guess if all else fails, I have an identical twin sister who may yet prove useful (She's always been in my contact list as "spare parts" - I may change that to Spare Bone Marrow now...haha!) 

Thank you again to everyone who has been thoughtful enough to share their thoughts and experience with me!