21 replies to this topic

[utopiann]

Hey everyone it's been quite awhile!

So I searched through the post histories on this topic but couldn't find anything of note and figured I'd go ahead and start a new thread.

As many of you know, I was diagnosed with CML in the fall of 2009, and am currently doing really well on Sprycel. On Friday I got the word that my father most likely will also be diagnosed this week as well. He's been feeling fine, but got a CBC done last Wednesday during his regular checkup, which revealed his WBC to be at 173K. Thursday's imaging session showed some spleen enlargement as well, so the doctors were confident enough to hint at CML, but are still waiting on the results of a BCR/ABL and BMB to come back early this week for the final confirmation.

How is this possible?

I've always heard and read that CML is a random mutation, and there is no genetic link or hereditary predisposition to it. Have any of you heard of such a thing happening in two family members so closely related?

My family is taking the whole thing in both shock and stride. The thing is, we all feel like we've dealt with and conquered this already with *me*! While we're all sad at the news, there is still this optimistic sense of "better the devil you know than the devil you don't know".

Thanks for any information you find. I'll be sure and followup once we know more, but I am simply floored.

Wish you all peace and good health,

-j

[Susan61]

Hi:  First let me say that I am glad your doing well on the Sprycel.  I just posted to someone on the CML 2 Boards who had a similar question regarding hereditary as he knows someone who is just diagnosed with CML and also has a cousin with Leukemia.

I was told it was just something that happens with a mutation just like the information you have.  I wonder if they will find something later on as research goes on.  My Grandmother and her daughter ( my Aunt) both had Leukemia a few years apart, and it was found too late for both of them.  They died within a short time of each other.  Nobody knows what type they had, or for how long they had it.  This was back in the 60's.  We always wondered if they could have been treated if it was found earlier.

This topic is brought up every now and then.  I also was never asked if I was exposed to anything like Benzene etc.  which I wasn't.

I think its still a mystery for futher evaluation.  Let your family see how well your doing, and maybe your father will be on the same drug as you if that is what in fact he has.  Thank God for our routine blood testing.  I tell everyone that if they are feeling fine that they still should get their yearly work-up.

That is how CML is found in most cases.  Sometimes we work a hectic job, plus life is hectic in itself and we just feel that is why we are fatigued all the time. I had a very demanding job, and never thought much of the bad fatigue I had till they found CML on me with routine testing.

I wish him well on all his other tests.

Take Care

Susan

[jjg]

Hi Jadrian,

Sorry to hear about your Dad. It does seem like a very weird kind of bad luck.

My mother lost two of her brothers (so my uncles) to acute childhood leukemia 20 years apart - one very young, one at 18. I don't know which type. All three of us grew up in different towns so no environmental links. I think that is weird too and it was very sad for my mum when I was diagnosed with CML, but I'm doing well and she is starting to relax. Fortunately CML today is for most people so very different from what it was back in the 1940s 1960s.

Best wishes for you Dad.

J

[Pin]

Hi there Jadrian, it's good to hear that you are doing well on Sprycel. I have a family link too - my father's brother was diagnosed about 13 years ago when he was in his 60s. They say there is no genetic link but it's harder to believe it when you have such salient examples of 'coincidence'. The thing is though, almost everyone else has no family history, so you'd have to think that we are the exceptions. I wish all the best for you and your dad, it must feel very surreal to you. I guess the best part is like what you said - that you know so much about CML and its treatment etc. now that at the very least you know what to expect. Wishing you well.  P. xoxo.

[Tedsey]

Sorry, I won't be much help.  But I totally believe CML is inherited and/or the propensity to develop it is genetically programmed from the start.  What turns on this mutation may always remain a mystery, but I believe we were designed to develop it.  Whether or not other members of our biological family are also diagnosed may have nothing to do with it being passed on.  Since CML rarely occurs, it is hard to track in families.  And we may have to look back many generations to spot it.  Of course, this is just my opinion.

After reading about a recent study that tracked healthy people from their 70s and beyond, very little difference could be found in the lifestyle habits of those who lived 90+ years and those who did not.  As a matter of fact, quite a few 100 and over took rather bad care of themselves (ex. smoked, drank, ate terribly).  I think it is all about the genetic hand you are dealt.  Thank goodness for the TKIs that improve our odds regarding longevity.

I really hope it turns out that your father does not have CML or any other serious illness.  Please let us know how he is doing.

Take care,

Tedsey

P.S.  BTW, Multiple Sclerosis was never thought to be passed on genetically until recently.  Now there is some support that it may be.  It has shown up in at least 2 people in my family.  And I knew a daughter, mother and grandmother who were all diagnosed.  However, there is still some disagreement about this.

[Trey]

There are only a handful of familial CML leukemia cases reported.  So it is extremely rare.  You only have half of each parent's chromosomes.

[utopiann]

Checking in for my every-couple-of-months followup posts

So yes, my dad is also now diagnosed with CML and is doing very well on Sprycel. We're working with the Creighton University Hereditary Cancer Center under the direction of Henry Lynch to establish a disease pedigree and participate in studies to determine whether there is any causation for this stemming from our blood relation. Will keep you all posted with whatever we discover!

[Trey]

You may be interested in this posting about DNA research.  If anyone would be able to help with familial DNA causal relationships, it would be you and your father.

http://community.lls...e/117834#117834

[matt92711]

Saw this and thought I would pipe in with my 2 cents. I have CML and my father has Essential Thrmobocythemia (JAK 2 Mutuation). Dr Eric Feldman speculated if it is possible there is a genetic connection here as they are both rare myloproliferative diseases. One day I guess the study of genetics will advance enough to determine this conclusively.

[cousineg]

Hi Jadrian,

I found some links about the subject:

http://cf.mc586.mail...SseBVwB/oHTadPk

http://cf.mc586.mail...xQdTJ3AfX5g&f=1

http://health.groups...L2/message/2197

http://asia.groups.y...p/message/82584

http://cf.mc586.mail...Ssd+PwrpLR7Oqug

http://www.ncbi.nlm....les/PMC2754952/

http://www.ncbi.nlm....les/PMC2805753/

If I was a doctor, I will check the JAK2 mutation (you and your father). 

Hydrea reduce the JAK2 mutation

Girodon F, Schaeffer C, Cleyrat et al. Frequent reduction or absence of detection of the JAK2-mutated clone in JAKV617F-positive patients within the first years of hydroxyurea therapy. Haematologica 2008;93:1723-27.

http://www.france-he...ro=338&num=4203

Your case is extremely interesting for the research. I hope that the CML specialists will find something. If you have a brother or sister, it would be a good idea to consult your doctor about.

Best wishes for you and your family.

                                                                   Gilles

[Berkalvee]

Hi Jadrian, just wanted to put in my two cents here on this subject.  First off I am glad to hear that your father is doing well with the treatment, and from reading your previous posts, it sounds like you are doing good as well. Not sure if you found any of my previous posts on this subject but I felt the need to let you know my story as well regarding familial relations and CML.  I had an older half-brother pass away from complications from leukemia in 1996 and then I was dx'd with CML in April of 2007. Not long after that, I did my research to figure out that my older brother did indeed have CML in '96 also.  I knew he had leukemia but never knew which type until after I was diagnosed, just to cover all the bases you know? Like Trey has said, there are only a handful of cases like ours and I know from experience, trust me. My oncologist had never come across two brothers (not to mention the fact that he was 26 and I 30 at dx respectively) that both had CML in his 30+ years of practicing medicine nor had any of his colleagues. It will be interesting to see what your doctors find out and if they can indeed find a link between you and your dad. I may not be much help since my brother is gone, but if there is any way I can contribute to their research I would surely be interested. Good luck!

Berkley

Oh, one last question, did your dad serve in Vietnam? My half-brother had a different mom but we had the same dad and ours' served in Vietnam and was exposed to some questionable stuff over there, i.e. Agent Orange, etc. Just curious, since there have been some links to that and different types of cancers including AML, just not CML, yet...

[Harleysmummy]

utopian..

There is more and more evidence of blood cancers being genetic/hereditary than we realise..

There is research continuing especially in sweden and they are finding more and more evidence to suggest that it is infact the more i research it the more i find private hospitals who state one of the main causes of lymphoma is genetic

My grandmother has HL stage 4 and i am waiting for a diagnosis for my son, i have also been contacted by a man who is in remission and who's son has also recently been diagnosed

[tiouki]

hello utopian,

I am quite in the same situation than you. I am 22 and was dxed this summer. My grand father had CML from 1996 to his death in 2007.

We were also worried about the hereditary of the disease. My doctor who is a CML specialist told me his opinion about it I think it might be interesting to you. He says that if CML was strongly hereditary, considering the number of cases, they would have seen it already. This does not totally exclude that some people may be a little bit more likely to develop CML, but it has not been proven so if this effect exists it is very limited.

I guess we are only the few unlucky families who statisticaly got the disease twice.

By the way I am also on sprycel, with no side effects, love this drug

Good luck !

[matt92711]

There are approximately 12,000 members of this board. These members are most lymphomatic leukemia and not CML.

In the US there are estimated 10,500 new cases of AML each year (per wikipedia)

In the US there are estimated 6,000 new cases of ALL each year (per wikipedia)

In the US there are estimated 16,000 new cases of CLL each year (per wikipedia)

I think there are about 4,500 new cases of CML diagnosed each year in the US.

Per these numbers I would assume we make up about 15% of all the people on these boards or about 1,800 members. Now if you only figure active participating members here we are talking about a much smaller number. Now given all this we make up a tiny percentage of the US population (actually there are people here from outside the US so we are even a smaller percentage of the relevant total population). Given all that it just seems to me that there is way too high of an incidence of familial histories of this disease.

I think we can agree that there is no reason to freak out and think anyone else in our families are likely to get this given the rarity, but I do think from a research perspective if there was an interest to understand what makes people susceptible to getting CML by looking at familial cases it may be easier to identify common genealogical factors. Perhaps one day there will be treatments that can repair problems in DNA and thereby remove the risk factor for this.

[tiouki]

I think we have to be very careful with these kind of numbers, since results can be counter intuitive sometimes (for instance in a class of 23 students, there is a 50% chance that 2 will be born on the same day. Quite surprising).

If we try to apply the same reasonning for CML :

If you have CML, let's estimate the probability that you have one relative who also develops CML. We will consider 10 relatives (2 parents 4 gd parents 2 brothers few cousins...), that have a 1/100 000 probability per year to develop the disease. Let's say they are 30 year old in average.

Then each year, the probability that at least one of them also develops CML is equal to

1 minus the probability that none of them develops CML

= 1 - (1-1/100000)^10                         [^10 because you have 10 close relatives)

= 1.10^-4 or 1/10000 approximately.

So each year for 10000 persons with CML one will have at least one relative who also develops CML.

If you multiply this by the mean age of your relatives, let's say 30, you get 0,003
That is 1/300

That is for each 300 persons that have CML, about one of them will have a close relative that have CML also.

I know I did many approximations but the order of magnitude is still quite high

I guess I belong to these 1/300 guys

[matt92711]

I had no head for these type of statistical calculations, but what you are saying sounds right.

[TK77]

I'm new to this group and am likely not posting correctly,sorry. I found this group while researching information about my husband's newly diagnosed MPN, essential thrombocythemia. I am very curious about the heredity factors and the connection between a parent/grandparent with CML and children with an MPN or CML. I am curious if anyone has heard more on this since this discussion and if anyone knows what test can be performed to check for a hereditary factor. I'd be interested in some statistics of CML/MPNs running in families and the likelihood of having it in the family if it wasn't hereditary. Also if those with CML also tend to have the JAK 2 mutation. I know that there is a Philedelphia chromosone present in the CML but wonder how that and the JAK 2 mutation are linked and what is triggering the body to mutate on those specific areas. Okay, I appreciate any input... : )

[tiouki]

Hello and welcome

I actually don't know much about MPN, but for CML there are no hereditary factors at all.

I am 23 and have CML. My grand father also had CML. We are just "unlucky" regarding leukemia.

If you are interested I have written below an estimation of the probability that 2 close relatives both develop CML, the order of magnitude is 1/300.

What I mean is that it is not that unlikely.

Anyway good luck with all of that , but I think that you won't find anything for CML (I don't know about the jak2 mutation)

Pierre

[CathyS]

Hi, I to have wondered for awhile our son passed many years ago (38) he was diagnosed with AML so when I was diagnosed with CML the doc's said that it was not related in any way but it still makes you think about it. My cousin's daughter was also diagnosed with leukemia (I don't know what type) many years ago also.

We have many in our family that have autoimmune disorders also, wonder about that also.

I was diagnosed in Aug 2011 and started with Sprycel and so for doing okay, some good days and some not so good days. One day at a time.

It will be interesting to see if they do find any genetic link or hereditary.

Cathy

[Lynne D]

Have you thought about it being an environmental issue? I know of 3 people from the same small town (population 7,000) with CML. We have a rubber company, a plastic company and a lake that belonged to United Nuclear Corp. and had a plutonium explosion in the 70's. I get stonewalled all the way, but I'm sorry, I am pretty confident it's not a coincidence.