35 replies to this topic

[luvmybees24]

When I was first DX in November 2011 I was all about the + attitude. The "I'M GONNA BEAT THIS AND BE FINE!" and only talked positive about my disease. Now I'm 3 months in and I'm starting to have panic attacks. These drugs do keep us from progressing into the next phase right? Some things I read make it seem like going from chronic to accelerated to blastic is inevitable.  I'm only 35 and so scared I'm not gonna live to see my 40's. Even tho I'm doing great on Tasigna and all my bloodwork numbers are good.

[Happycat]

What are the stages of grief?  I suspect a cancer diagnosis puts one in the same or similar cycle. Anyway, if you look at those stages, you might recognize the pattern and see yourself simply at a different stage on the way to acceptance.

Nor is it smooth transition from one stage to another. Somedays I'm all the way to acceptance, then on another day, I have a hard time with side effects and I go back a few steps to whining or anger.

Toward your specific concerns, on balance, you should be fine. You have a better than 90% chance to survive 5 yrs.   That's darn good odds. Focus on the 90%, and not the 10%. The glass is way more than half full.

Traci

[tiouki]

Hi Laura

I suggest you to calm, there is no need to panic here.

These drugs DO keep you from progressing to the next stage for almost all of us. Nothing says that progressing to the last phases (blastic) is inevitable if you follow the nilotinib treatment, on the contrary.

Unless your disease evolves into acute leukemia, you lifespan will be normal. I mean totally normal. And your disease will stay controlled during all your life.

Considering the risk of progression of CML, if I remember correctly you have no risk factor: you where caught early, in chronic phase, and you deal well with nilotinib which is probably the most effective drug. I would not be surprised if you have already reached the stages of remission where the risk of blastic crisis is almost null. Considering this your odds are probably closer to 100% than 90%. So yeah the glass is more than half full. Having a "cancer" is difficult to deal with, but in our case the new treatments enable us to live normally, only by taking a pill each day, like people suffering from hypertension or increased cholesterol.

I think you should try to consider CML like having hypertension for instance: you have to keep an eye on it, you have to take your treatment, it is a real problem BUT it is absolutely controlled by your treatment so no stress regarding life expectancy. Personnally I'm 22 and doctors told me that I won't have my lifespan reduced.

I wish you good luck

Pierre

[PhilB]

The key thing here is to be careful what you read!  There is still lots of stuff out there quoting figures and prognoses from the pre-Gleevec days.  These can really put you in a spin if you don't recognise them for what they are.  Also. don't fret when you see things quoted as 5 year survival rates.  That's just an 'industry standard' way of measuring outcomes and tells you nothing about the shape of the curve.  If you don't progress in the first 2 or three years then the odds are tiny that you will later on.  This means that the 5 year figures are pretty well the same as the 10 year figures and what we expect the 15, 20 and thirty year figures to be.

What the numbers show is that close on 90% of people will be fine just on Glivec.

Half of those for whom Glivec doesn't work will be okay with Tasigna or Sprycel

There are new drugs like ponatinib coming through for the reamining 5% or so where the first three drugs didn't work

Even if those don't work for you there is still transplant and the figures for that get better all the time.

Bottom line is that each of heart disease, stroke or another cancer are all still way more likely to kill you than your CML is.  So have fun worrying about them instead!

Phil

[tiouki]

I would add car accidents and domestic accidents on top of the list

[kreuz]

agreed with you

[pammartin]

Hi luvmybees 24,

It's been a while since I read the stages of grief, if I remember correctly Kubler-Ross's model reads like this,

denial

anger

bargaining

depression

acceptance

I believe Traci's statement is so correct, we do go through grieving stages because we have lost something important, our health.  We may have tools to fight the disease but after the day of our diagnosis, our lives change forever.  Nice touch Traci, by pointing out the 90%, for anything we are talking about this would be excellent odds.  Also, Pierre brought up a great point, looking at CML much like high blood pressure, diabetes, or other disorder, one has to take medication to control the disease, and yes there is a chance the meds might fail, but for the most part this disease is treatable.  I was diagnosed  in October of 2011, just a short time before you were, and I still have those panic attacks that begin with 'I have leukemia, to holy crap what happens when if the meds don't work, to how will my family cope if I become very ill.'  I have days where I drive myself insane, then the next day I am disgusted with my behavior.  I keep focusing on the advice I have read from others to others and myself, as time moves along and we move away from the initial diagnosis and our results continue to show response, CML will no longer have such a hold over our every day lives, instead it will take a place in the background of our thoughts.  Phil always has excellent information and advice, most times if I am having a panic attack I head for this site and after reading several posts both previous and current I usually feel better.  We are dealing with a serious disease and if that isn't scary enough, the TKI's are the icing on the cake.  I hope you have a better day today, thinking positive consistantly is a grand idea, but with what we are dealing it is damn near impossible.  Take care

Pam

[JMGrad]

Oh I KNOW what you mean... I have started feeling extremely anxious lately as well - my heart getting nutty (I know it's my anxiety because I have a history). Ive found that getting online -Here!- and reading current/prior posts helps a LOT! Like yours! So thank you for asking because the replies have helped me find a new way to look at this when I am feeling desperate.

If you ever would like to talk, please messsage

Jean

[LivingWellWithCML]

Phil nailed it re: increasing odds.  I'm almost 10 months into Gleevec 400mg with CCyR and a decreasing PCR, so the way I look at it ... if I can get to the two-year mark on treatment and maintain CCyR and a deep PCR response (either MMR or CMR), then the odds go up to 99.8%.  Each set of 3-month test results seems to calm me down further, because the odds are surely going up each time I get an optimal test result.

I had all kinds of crazy panic-striken moments over the first 4 months of treatment ... I was just waiting for my liver to fail, or the CML to morph into ALL, etc.  Meanwhile, being diagnosed in chronic phase with lower risk factors, I should've spent more time worrying about getting hit by a bus - because the odds of that are probably greater!

[CallMeLucky]

Everyone has given you awesome and accurate advise on this thread, there is little for me to add.  The only thing I can tell you is that unfortunately this a function of time.  The more time that passes, the better you will feel about the disease and your long term.  If nothing else CML has taught me a thing or two about patience that I never understood before.  Know that everything you are feeling is 100% normal and typical.  That is not meant to minimize what you are feeling, rather to help give you perspective that those who have traveled this path before you have done it pretty much the same way.  We feel for you because we know how unsettling it is, but if you look at the people around you in this community (virtually speaking of course) you will see that as a group, we fare very well and so will you.  Hang in there.....

[CallMeLucky]

Oh and one more thing, I have always fealt that the cancer "positive attitude" diatribe is a defense mechanism, so don't be surprised that its wearing off.  The nature of our illness being a chronic disease does not permit an indefinite positive attitude.  I don't know anyone who can be positive all the time without pharmaceutical help .  It's not normal to be positive all the time, its exhausting.  Your return to changing emotions is actually a sign of adjustment and that over time you will get back to being the person you were before, with a normal range of emotions and some new baggage.

[Susan61]

Hi:  First let me say that nobody can be positive all the time.  How can you with just what life throws at you each day?

As for the CML and how you will do.  You are experiencing what everybody else has gone through.  You are no different in how you feel, especially only being into this for about 12 weeks.  It takes time.  A lot of time, but you have the time to watch things get better.  You have days where you feel so disgusted with the side effects, and you go through the WHY ME??  Know that your not alone.  We have so many new people who feel just like you do, and I promise you that it gets better.    I say better, because 5 years from now when you are 40 you will look back at where you were now, and where you will be then..  I post a lot because I like to help people see what these TKI drugs can do.  You are very blessed to have gotten CML now rather than years ago.  That might sound odd, but years ago they did not have the knowledge they do now.  I am at my 13 year mark of Living With CML.  If everything else in your life is going good, then you can think Positive thoughts to keep you on the right track.  Just keep doing what your doing.  Enjoy life.  Your young, and do not think about Accelerated Phase and Blast Phase.  If your doing good on the Tasigna, you should be moving right along to a undetected PCR down the road.  You do have a lot to be smiling about.  Your blood work is good.

[Lisal]

Call Me Lucky-you hit the nail on the head!  Its a chronic disease and hard to stay chronically positive.  We shouldn't be so hard on ourselves. Sometimes I do think that others expect us (and we expect ourselves) to be positive about this disease all the time and it is just not possible!

[Judy2]

Hi Laura,

I can only reiterate what everyone else on this board has said. Of course it is scary to hear the word cancer but know that over time your CML won't be the first thing you think about when you wake up in the morning or the last thing you think about before you go to bed at night. It will be part of  your life but it won't be your whole life. As your blood tests come back consistently in the normal range you will begin to put CML on the back burner and will focus on the things you focused on before you got your dx. This is not to say that you will never have anxious moments regarding your CML but when you do remember this is normal and it will pass. Post as often as you like with any questions you might have or post just to vent, we are all here for you.

Billie,

I am so sorry you are having a terrible time right now. Please let me know if there is anything I can do to help.

Also, I am constantly getting the message proxy error when I type my posts and click on reply, this is beginning to drive me crazy. Is this happening to anyone else?

Judy

[pammartin]

You know frustrated, I just realized something in the past two days.  Even though I have tried to stress the fact the TKI's are called chemotherapy medications, it is because they are a chemical compound.  I am discovering most of the people that know I have CML and am taking Sprycel believe it is only for a period of time, like actual chemotherapy.  I guess I didn't explain things as much as I had thought, because these people think I take the med, I get better, and it is done.  I had to share this after reading your respose about how the people around us and ourselves fall into the trap of thinking we have to be positive all the time.  Hell I wasn't positive all the time before I had CML, I have no idea why I feel like I should be now!

[pammartin]

Yep Judy, proxy error all the time. 

[Judy2]

Hi Pam M.,

This is the weirdest thing. I went back to the board and your answer to me came up before my post was posted...but that couldn't be....I feel like I'm in an episode of "The Twilight Zone".... in more ways than one..

Judy

[luvmybees24]

Thanks everyone!!! You guys have really made me feel better. I, too, am tired of the "Just be positive!" and "It could be worse!" Yes, it could be worse, as could anything anyone complains about. I want to say YOU have this disease and we'll see how positive you are! I'm allowed to whine as much as I want! Somehow I think people think 2 months was enough to "get over it".

Laura.

[pamsouth]

luvmybees,  you go right ahead and whine all you want, I'm right there with you.  I was diagnosed in 2005 and thought I was over the whining until my previous oncologist and I went tick for tac.  Man is it depressing to constantly battle with an oncologist,  so I switched, but now all new test, etc, so I have been whining a bit myself.  Yep 6 years out an I am have reverted back to being a whiner.

PamSouth