34 replies to this topic

[Dina]

Some CML experts have said that CML is now a chronic and manageable disease whereas only ten years ago was almost always fatal,

they also have said that most of us will have a normal lifespan.

I'm really interested in your opinion on this and how do you see your future?

Thanks

[Ted]

I was diagnosed with CML only a short time ago, but from what I've learned non this board and my limited experience with CML I don't think the word normal has any place here. Lifespan, 5, 10, maybe 15 or 20 years but normal, I don't think so. That's only my opinion, nothing to do with any other person on this discussion board.

Ted

[Pin]

I really, really try to believe that what we have is, for the majority, a manageable chronic disease. There are many other chronic diseases which may or may not shorten your life and perhaps now this is just one of them, albeit with a scarier name.

My genuine, and I think fairly realistic, hope is that I will live long enough for the treatments to continually be modified  to keep me alive as long as I would live otherwise. Ideally, I would love for them to find a cure. I do hope, as others have mentioned, that there will not be serious long-term consequences of using these drugs. So far so good, we have 8 years or so of data. What more can we really ask for at this stage (...apart from a cure).

I see things differently now compared with when I was diagnosed. I now consider myself lucky to be in this position. There are far too many other cancers that do not have prognoses as good as many of us do. Sometimes I forget that.

Since I'm feeling philosophical, I'm going to leave this with my favourite quote:

Bottom line is, even if you see 'em coming, you're not ready for the big moments. No one asks for their life to change, not really. But it does. So what are we, helpless? Puppets? No. The big moments are gonna come. You can't help that. It's what you do afterwards that counts. That's when you find out who you are.

- Whistler.

[tiouki]

Hello Ted

I have a different opinion on the subject

CML kills you if it transforms into a blast crisis. If you do well with ITKs (I mean at least CCR, and of course MMR and PCRU) the chance of this kind of transformation is very low, especially for MMR and CMR.

And the 2 things that can make you stop ITKs (which would lead to a blast crisis after some time) are :

-resistance to ITKs

-intolerance to ITKs.

For the first case only T315I resists to all approved drugs (even though ponatinib deals very well with it so it won't be that much of a problem). There also exists some kind of resistances that are not mutation dependant and lead to ITK resistance but these are very rare. Plus if you are MMR or PCRU for some time the chance to develop these is almost null.

Second, as there are at least 3 ITKs available (and 5 soon with bosutinib and ponatinib) there is little chance that you won't tolerate at least one of them.

In conclusion if everything goes well, which will be the case for most of us, there is no reason that our life expectancy would be reduced by CML. If you have managed to deal with it for the first years where it is the most likely that the processes I described would appear (resistance, blast crisis etc...) there is no reason that you won't be OK after 10 15 20 or more years.

I am 22 and I am convinced that I won't die from CML

[MJB]

Good morning everyone. I have to jump in here! While I am grateful for our current treatment and expected prognosis, I must say that this guinea pig equates tki therapy to whether you'd prefer to survive a tsunami, tornado or earthquake? Between side effects, 100,000 plus per year in drug and treatment costs and the emotional roller coaster of waiting for PCR results to then be told that our disease is merely a chronic condition is patronizing.

We as a community should not become complacent. We need a cure and nothing less!

Just my thought, thanks for listening!

Happy New Year everyone!!

IForget

[tiouki]

Hello MJB,

Sure we need a cure, but as difficult as it is to deal with TKIs, without them we would be dead within a couple years so among all cancers our survival improval has been the most amazing in the recent history of dealing with cancer. I feel blessed not to be born 20 years ago... Plus research is doing  a great job : new papers are published every months and they are very promising for the cure and the new drugs/options to come.

Maybe I am being too optimistic as I don't have any side effect and I live in France so the treatments are paid by the state. But still, compared to other cancers, especially other leukemias, we are rather lucky. I didn't want to sound complacent, I totally agree on how difficult it is to live with CML.

Yesterday I have learned that my 23 year old girlfriend probably has interstitial cystitis which is an almost incurable bladder inflammation causing a lot of pain. I feel so powerless. At least with CML we have efficient treatment options.

Happy new year everyone hang on

Pierre

[Stevea]

April will be 10 years for me and I live a Normal life (I was 19 when diagnosed).  I'm just like my friends, I do everything they do and more!  If I didn't tell people about the CML then no one would know about it and I definitively do not feel as if anything is wrong with me. 

As for my future, I do not see anything changing unless of course they come out with a cure and I don't have to take a pill anymore. 

[kreuz]

i'm 26 yrs old, js dx last yr 17 Oct. i hope i can have a normal life span for me to get married, get a child, get retired, and many many more activities are waiting for me to do...... really hope that one day CML can officially announce as treatable disease just as normal like diabetes, hypertension

[kreuz]

yea...agreed with your statement that we are really lucky "group" among the leukemia. I will never forgotten how desperate i was in first 2 weeks after dx CML. especially while the doctor told me it's a type of cancer.........

[CathyS]

Dina thanks for bringing this to discussion. I often think about this and how will I feel in the future.

I was diagnosed just a few months ago (August) and have been told the same thing it is very manageable and you will have a normal lifespan (this is from someone who works with test results not how the body feels). I do keep a journal everyday how I feel and what is going on that day, I give a copy to my oncologist so she can track good day's verses not so good days etc.

I agree with Ted normal isn't part of how I am feeling unless you call it my new normal. Even though my new normal isn't what it used to be I am still here and can see my grandchildren and that makes me feel very blessed. When I go the cancer center and see many others much worse than I am again thankful that for now all I really need to do is take a chemo pill everyday and deal with the fatigue and a few other symptoms.

Things were very different years ago, 38 years ago my 3 year old son was diagnosed with AML he was given a year to live he died at 4 ½. The treatments were very hard on him but he always kept on playing as hard as he could. I have to keep remembering that. (so strange that now I have CML)

No matter how bad the day is you can always find JOY in something even if it's just someone called to see how I am feeling or I can get out of bed today.

Cathy

[KerriD]

I agree with Cathy...it is a NEW normal.  I say all the time what a dichotomy CML is.  I feel pretty good most days and feel so fortunate to be diagnosed when it is so treatable yet the days I feel yukky I wanna pull my cancer card and tell everyone to leave me alone.

I was just diagnosed in Aug 2011 thru routine bloodwork and I have been on Tasigna since diagnosis.  I reached Hemo remission in 2 weeks and I am very close to undectable.  Again...I feel so lucky.  But..my hair is thinning (I'm 47 and single ugh) I have itchy skin and brain FOG.  And then there is the COST $$$$.  The anxiety of the cost and keeping health insurance is one of the HARDEST things for me.  I have chosen to not share my CML news with my co-workers or a big part of my extended family.   I didnt want people to treat me differently. Some days it is hard because I am different.

[AliceJane]

First, I want to say; Great Question! I am glad you asked this, it has caused me to stop and really think.

This was hard for me, I have been on such a roller coaster with CML from the beginning. How I feels has changed, First I heard I had leukemia, YIKES! I have cancer!  Then I was told, don't worry we have a pill for that! Then I learned, if it did not work or stopped working there were 2 more, Then the first one didn't work, then the 2nd side effects could kill me faster than CML, poof! I was in hospital with chest tube. And all through this I felt I had gotten;

awful news, you have cancer

good news, you won't die, take pill

bad news, you won't die, but you will be sick rest of your life, and feel like crap lots of days. Oh and by the way we don't know what meds are doing to rest of your body, what issues this will cause 15, 20 years down line.

Bottom line, I am in a War. I may not always be on front line, in line of fire, but I always hear the bullets and bombs going off. I just want this war to end, I am exhausted, thrilled to be alive and out of harms way, but I always know, I can be sent back to the front with one bad test result.

[CallMeLucky]

My expectation is that I will die with CML, but not from CML.  My hope is that I die without it because it was cured either through a formal medical cure or by me outliving the CML stem cells.

I'm about a year and a half into this now and it is certainly not an easy ride.  Lots of emotions and the side effects are difficult.  The longer I live the more I realize that sometimes bad stuff happens and that is just the way it is.  I hate qualifying everything in my life with the statement "It could be worse", but the reality is that it could be worse.  When I was diagnosed I really only had one goal and that was to stay alive long enough to see my children grow up.  They were 6 and 4 when I was diagnosed.  I plan to get at least 15 years doing whatever I have to do to stay alive, and hopefully with some luck I will get there.  That will get me to about 52 years old.  Anything after that will be bonus as far as I am concerned and hopefully I'll get some of that too.

There are days when I gripe and moan about things, I certainly have my share of pity days, but there are plenty of good things too.  I made a point on New Year Eve when I was sitting with my wife and kids to have a conversation about the good things that happened in 2011.  The past two years have been really tough and we have another illness in the family diagnosed on Christmas day - my father in law has a stage 4 brain tumor.  No magic bullet TKI, no nothing, just some rough treatments to try and keep him alive a little longer.  It is a sharp contrast to my illness.  In my case, we talk easily about years and potentially decades that I could realistically survive.  With my father in law, who is only 70 and in better health than most people at any age, we are talking about months and anything more than a year or so would be considered a miracle.  So I try to look at it for what it is and accept that this terrible thing happened to me, but I can live with it.

Everyone has something bad to deal with in their life, sometimes it is big, sometimes it is small, sometimes it is horrible and sometimes its just one of those things.  So far for me, CML has been "just one of those things" as long as it doesn't become horrible, I can accept that and acceptance goes a long way towards peace of mind, which brings me to my last point.  If you ask me what is the single thing that CML took away from me, I would say it was peace of mind.  Before dx I had the luxury of being ignorant to these types of things.  Slowly I find I regain a little peace of mind each day, week, month, and year that goes by.  Every good test results makes me feel a little better about things.  Sure there are set backs, I get a cold, feel horrible, get some crazy side effect and think "OMG I must have transformed to blast crisis over night, surely that is why I feel this way"  Then the cold goes away and I get better again and I realize that I can still get better and each time it is less scary.  So I go on, because that is my only option.  When I was diagnosed I told my doctor "I'm not done yet".  We agreed to work together to get me the time I need to finish everything I need to finish.  I have a long list and don't plan on taking anything off it.

[CMLSurvivor]

This is a very good question. In my opinion I have to say that yes it is a manageable desease but it is still a desease. It is not as if we can go about our day like normal people. We have to be very concerned about, did I remember to put on sunscreen so I don't burn the crap out of my skin because the medication I took doesn't allow a lot of sun exposure, do I feel secure that I wont get the sharts, and if I do, is there a bathroom nearby, will I have enough energy to get through the activity of the day, etc., etc., etc..

Yes you can live a long life, if you respond well to the treatment but if you don't then you have a hard time of it. This is still a cancer. To categorize it has anything else is a disservice to us all. It plays if off, like it is no big deal!!! I know we can live a long life if we respond to treatment, but I really would like to have a cure and not have to worry about responding to treatment all the time. Always have in the back of my mind that the treatment could stop working at any time.

I think that because so many resond well, and it is the first medication of its kind to actually work that they are forgetting the big picture. Cure Cancer of all Forms!!!. I hope I am around to see it in my lifetime.

[Stevea]

I honestly think that the problem with a lot of people is that they think to much, I saw you just said "Always have in the back of my mind that the treatment could stop working at any time." Who wouldn't stress themselves out if they always thought that.  The way I see it is if that was going to happen, then it will happen.  There is nothing we can do about it so why think about it every day?

When I was a kid (maybe middle school), the few minutes right before I would fall asleep I would think about being sick and being in the hospital and wonder who would visit me (this thinking went on for years).  Well after high school (19years old) that actually happened to me and believe me I do not think about the bad things that can happen anymore (I know it sounds dumb but it's what happened).

[CallMeLucky]

Some superstitious self-fulfilling prophecy!

It's hard to do but Stevea is right - there is little benefit in expending energy on things that may never happen.  Since energy is a limited resource for me now I have to be more disciplined in how I piss it away.

I think people have to be realistic about how the world works.  We can push to make it better, but there is a certain amount of understanding to keep yourself from being angry all the time.  I hear often that people tend to have this idea that doctors have written off CML as a check in the "Win" box and not interested in solving the final cure.  My experience from what I have seen is quite the opposite.  For a very rare disease, CML gets an awful lot of research.  We are lucky because CML is a very simple disease in the sense that they know how it works and unlike some cancers, there is one primary genetic defect that drives the disease.  This is why they were able to come up with a treatment that works.  Unfortunately it has not gotten at the root and that still requires more research, which does continue.

It is easy to say that there is no money in a cure, but that is not entirely true.  There is money in a cure and considerable notoriety.  From a business perspective while it is true that perhaps it would not make sense for Novartis to develop a drug that would undercut one of its largest revenue producing products, we have to keep in mind that Novartis, is not the only entity involved.  An open market provokes competition and it is worthwhile for other companies to produce a product that is better than Novartis' product.  Sometimes, even if that new product will not generate as much revenue for the competing firm, there is a lot to be said for reducing your competition's market share and diminishing their revenues and profits.  So it is not as simple as a couple of people sitting in a board room with the cure to CML and saying "we're not going to let this get out so we can keep all those sick people on TKI drugs instead" (evil laugh).  I trully believe there will be a cure for CML when someone figures it out and I believe it will be pursued because like Gleevec it will be a stepping stone towards better treatments and potential cures for other more complicated and prevalent cancers.

It's also not realistic to say that all cancer must be cured.  That kind of thinking shows a lack of understanding and appreciation for what cancer really is.  Caner is not a single disease, and we have unfortunately been taught to see it as the one big bad monster.  That is how you get people to donate money, not by giving them a list of diseases they can't pronounce.  But cancer is really a list of very different different diseases with different causes and drivers.  The only thing they all share in common are two basic things, either uncontrolled cell growth or cells that don't die when they are supposed to.  The last 30-40 years have shown us that this idea of a single global cure for cancer is just not realistic based on what we know today.  Each one of these diseases needs to treated differently.  Hopefully better stem cell research will open new paths to explore treating these diseases.  But that road is riddled with many obstacles, including the very real reality of costs.  So like it or not, if there is no potential profit, then there is not going to be much investment.

I'm encouraged in what I have seen, mostly I am encouraged by the fact that most people are now living with CML and few are dying from it.  That's really the thing for us to hold on to and recognize that we are getting a second chance, when those who came before us did not have that chance.

[MJB]

Happy New Year Lucky! Your two posts are, as always, right on the money and well said!

I always enjoy reading your thoughts and insights and hope that some day you'll be able to squeeze a blog into your busy schedule!

I read with great sadness the information about your Father - in -law and glioblastoma. A close friend of ours is also dealing with that diagnosis at 53 and it truly puts into perspective how fortunate we are to have the treatment that we do. I saw an article about a new treatment for glioblastoma that has had amazing results. I believe it is in trial now. I will continue to try and find the article to forward to you.

Once again, thank you for sharing your thoughts and feelings here with us. Your insightfulness, knowledge and wonderful ability to communicate make this road easier for me to travel!

IForget (MJB)

[Dina]

CML, such a rare disease that was once called an "old man disease", and here I am 36 years old, a female with two young children.

Before my dx I used to panic about little things, not so important things, where only 4 months later here I am talking about my life, and my life expectancy,

what a turnaround. This disease has taught me not to panic about those stuff anymore, in fact it made me a stronger person, a more confident person.

When we look around and see an elderly people, we couldn't help but not to wonder, "will we get that privilege of getting old", but what should we really concentrate on

is how to enjoy our life now as much as we can, age will bring us its own problems even without CML, so lets live a life right NOW.

I also have chosen not to share my disease with others except my closest relatives, I want to stay normal as much as I can around my kids and other people, even though is so hard to do so.

Thank you my friends.

We have to hope for a better tomorrow!

Dina

[Dina]

Hi Stevea,

Thanks so much for sharing your story,  I wish that others who are doing well like you would come here and

tells us their stories as well.

Positive news and positive thinking are always welcomed!

[Judy2]

Yes, I too am thankful that we have these "wonder drugs" and hopefully we can all have a normal life span but CML is a chronic cancer, this is not a piece of cake.  I have a friend who had ovarian cancer 5 years ago and thank goodness she is fine now 5 years out. Her chemo treatment was brutal but it is done, she's finished with putting all these strong chemicals into her body. For us CML patients it never ends. We don't have to endure intravenous chemo but we have to deal with oral chemo for the rest of our lives. How good can it be for us to be putting these strong chemicals into our bodies day after day, year after year? Of course, I am thankful for these medicines but at the same time I am concerned about the long term consequences of taking these medicines. So while our side effects might not be as debilitating as intravenous chemo some of us have side effects that do affect the quality of our life and for us that do it never ends. So we have CML, we deal with it and go on but I do have to acknowledge it is a chronic cancer with its own set of challenges, it is not -you have CML, you take this pill and you will be fine. Only saying.....

Judy

Judy