22 replies to this topic

[Dina]

HI there,

I know that CML's prognosis is a way better now then only 10 years ago.

However the doctor who did my BMB while I was in the hospital has told me when I've asked him

"How long I can live with this disease?", He looked at me and said: 8-10 years,

I've started to cry, then he looked at me once again and said: What did you hear from

your first doctor?(my oncologist now), I said years and years, even decades, then he goes:

How does 15 sounds to you, 20, 30, do you like 50(years)???

I really didn't like that doctor, but for some reason I just can't get him out of my head

and his first early prognosis which was 8-10 years.

I was dx three months ago, on Tasigna for two months, so far so good.

Wonder what's your opinion on this and what are you hearing from your doctors?

Thanks, I just had to share my story!

[GerryL]

My first hematologist told me I only had to worry about having an accident now - I wondered at first did he mean I was more likely to bleed to death from a cut. What he meant was to just make sure I didn't get hit by a bus etc. The expectation nowadays is that most of us will more than likely die from something else rather than CML. Just forget this doctor, he sounds a bit like a sadist anyway.

[Judy2]

Hi Dina. I  was dx in May by top onc. at top hospital. He said  CML will not shorten my life span. If I were you I wouldn't listen to the doc. who did your BMB. Hopefully, you'll never have to see him again.

Judy

[Lizzybee]

My onc said that CML should not shorten my life.  In a webinar, Dr. Druker said they are optimistic that people can live for 30 years with current meds.  With all that's going on in CML research, I would not be surprised if there's a cure in our lifetime.

[Dina]

Thank you all for your responses.

My BMB was done by a hematologist/oncologist.

He works at the same office where I go to see my oncologist, they are partners.

I know that most of us been told that CML shouldn't shorten our life span,

but what bothers me is that he should know better and isn't he aware of all of the recent advances regarding the CML,

my case is not any different, he told me that without looking at my final BMB results.

I'm 36 years old female, 8-10 years was certainly a shock.

[Trey]

CML prognosis is now 95% survival rate.  You may want to read this:

http://community.lls.org/docs/DOC-1271

[momruns]

Dina,

I got my Dx in Feb 2011, shocked like the rest of the group.  My onc was very calm about everything, just a pill a day and blood work on a regular basis and no big deal.  I was flipping out and this guy said no big deal.  I was started on Gleevac 400 and in a couple months the side effects were brutal.  After I basically told him he was nuts and there are side effects he talked with another onc and they cut my dose to 300mg/qd and now he listens to my concerns.  He used to say, "I never heard of anyone having that problem".  leg and hand cramps, the big D, fatigue beyond belief.  I told him my concerns and what I was going to do about them.  He then started to listen and realize that this is life altering and scary.  8-10 is what I heard and he told me he has had great success and a long life is very possible if I take care of myself.  I was blessed to be in great shape  the right weight and with no other health problems.  This web site has been my savior.  I think just knowing I am not alone and just some lab result numbers lets me live my life. 

Take care,

Loreta

[Dina]

Hi Loreta,

Just wonder where did you hear/told 8-10 years?

[markmendonca]

what is dx can someone tell me

[Dina]

Thank You Trey for the link.

I've read it few times already, great information.

To add some positivity at least, when I was dx shortly after I went to see a transplant dr. for a consultation only

and for possible HLA typing. He has advised me that as of now that is completely unnecessary and

he thinks that with today drugs he expects me to be around to raise my kids, see them graduating from college, and most importantly

maybe even have a normal life span. Great News guys.

But, you kind of remember your first doctor following the dx and those first words, so his words/numbers are still bothering me, what if he was right?

[markmendonca]

i allso have cml now for 2 months  and i have a women friend she is older then me i am 42 and she told me she has been with this for 10 years now and doing well ... we need to keep talking to each other... this doc and more of them are very dump... GOD is the one that knows so keep going don't look back Mark from Boston Ma.

love to all

[Judy2]

HI Mark. Dx stands for diagnosis.

Judy

[pammartin]

The concept I am learning is not to blindly trust any information.  It does not matter if it is from a doctor or other source.  Asking people on here, like you did, seems to be one of the best sources of information us newbies can get.  No one will say they are more knowledgeable than the experts, but many of these people have been living the CML life for many, many years.  In two months I have been told two separate times my counts were so low I could not go out in public or be around people, I had virtually no immune system and would risk becoming seriously ill or contract an infection that would take my life.  I posted both times here and there were many replies, all stating either the 'specialists' needed their ears boxed for telling me, or the doctors had better read up on white counts and how low they can go with people still working, living, and being productive in society.  Each time I left thinking I was the cause of my family having to stay home or go without me to some function, the recent one Thanksgiving dinner, only to discover people here live with white counts much lower than mine and still go through daily lives without closeting themselves in a germ free room or wear a bubble suit if they go out.  

It is a cliche' but none of us know how much longer we have on this earth, like one person stated, stay out of the bus traffic, it is dangerous, but that doctor was ridiculous, there are people here who are going on much longer than the 8 - 10 years.  He/she probably had a fight with the significant other that day and decided to take it out on you.  I hope you are feeling a bit better, and continue to most forward, believing we are all going to be here for a long time!

Take care

[Trey]

The reason for this bad information about life expectancy is that until Gleevec came along, the prognosis for CML was poor.  But Gleevec changed everything, and very quickly.  Many websites still have not changed their old, outdated information to reflect the 95% survival rate.  And most Oncs don't see CML very often, so they remember the outdated information from years ago.  So because the prognosis changed so quickly and dramatically since Gleevec, many who should know better have not kept up with the latest information.  That is inexcusable, but reality.

[CallMeLucky]

Hi Dina - Sorry that jerk got into your head.  I think you know better now and people much smarter than him know better.  I don't know how much you like to mix it up, but if it was me I would print the following article http://www.medpageto.../Leukemia/25534

Highlight the title "Imatinib Normalizes Life Expectancy in CML" and then maybe a few other parts like ""Patients in this population are more likely to die of causes unrelated" to chronic myeloid leukemia, Gambacorti-Passerini and colleagues argued."

I would then mail it to him with a note that says "I figured if you were going to be treating people with CML, then you should be up to date on the facts".

Doctors are typically some of the most arrogant people you will meet.  If you really want to get under their skin prove they were wrong and let them stew on it.

[markmendonca]

trey thanks u help so many of us  GOD bless u ... Mark from boston

[markmendonca]

you r right they r arrogant thats y i am finding a new doctor now .. we have great people here that can help u find your way

[PhilB]

Hi Dina,

I know what you mean about keep fretting on the one medico who did give you a bad prognosis.  When I was dx the doctors were all pretty positive.  As soon as they had left the room, the senior nurse started talking to me about making sure my life insurance papers were in order!  I remembered that many times in the small hours. I keep meaning to go back and give him a thorough kicking.

In their defence, as Trey has said it's a rare disease that has changed a lot in the last few years and you can't expect everyone to keep up with it.  When I was dx in 2009 even the website of one of the biggest cancer charities in Britain was still quoting the pre-Gleevec prognosis until I had words with them!

[Dina]

Hi Lucky,

Couldn't agree with you more. He was the most arrogant doctor I've ever met and also very rude.

For some reason I've always thought that oncologist should be very nice and polite to it's patients.

He would walk into my room and after he realizes that I was crying, (I was in shock like all of us)

he turns back and say "I'll come back when you calm down". What a jerk.

But I'm going to live forever and proof him WRONG!

[random]

Haha go go Dina!