10 year survival with CLL, treated or not, comes with significant risk for other cancers

newsmail.wyanokegroup.com/t...

We've heard this for years.  These researchers have now confirmed and enlarged the risk profile.  If the old conception was that chemotherapy was the culprit.  This belief was partially responsible for the aversion to treatment.   Their study shows comparatively little difference in risk between treated patients and never treated. 

Skin cancer for sure, but breast, lung, and many more.  If there's a message for us here is know the risks you came in with prior to your CLL diagnosis and keep a watchful eye on those, but add the ones mentioned in your screenings.  

I just returned from Rochester ny,  my tie up and confirm visit to my central, or lead CLL Doctor. I have two other hematology doctors for CLL and three more who watch, treat and follow up my skin, mandibular/oral cancer and most recently lung cancer . Dr ZENT was at mayo when I first started with him.  He's now got an entire lab dedicated to CLL research at the Wilmot cancer center in Rochester ny.   He's is one of the leading CLL research doctors we have    

Dr ZENT is very thorough. And his physical exam is  long and covers every area, skin, muscle tone,  checks for fluid retention,  feet, hands, mouth, ears scalp etc.  the most thorough physical I get from anyone and that's with no blood work   I brought a full batch of those from the recent past   And he regularly gets updates from my local hematologist oncologist .  Throughout the whole exam he stressed the "other"cancers  

I left with a list of to do's... Of course he sends an exhaustive report to my other doctors. 

One of the most frustrating parts of acquiring other cancers is they nearly always exclude you from participation in a trial .  

second on my list of frustrations is that many if not most of the other cancer doctors view CLL as sligtyly worse than athletes foot.  The old "good cancer" comes to mind as does the avoidance of treatment which probably led to the "good cancer".   It's true that those with the more aggressive or potentially dangerous types of CLL is statistically  smaller than the indolent types, but CLL can change and as newer less costly wide array genetic testing becomes more standard and cones into wider use  that may change.  The wrong  impression of CLL ?  That may be our job to teach our doctors.  

So, now, something to do while in watch and wait   

May good news be yours  

Beth

  

23 Replies

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  • Beth - I just had my first appointment with Dr Zent. I live in a suburb of Rochester. What a gift to have him so accessible. And the examination was thorough! (We are still laughing about me having a big tongue in a small mouth). 

    Virginia

  • So good to hear!!!  You Are very fortunate indeed.  And a nice place to live too.   Yup, that sounds like a Zentism.   Best,  

  • Oh my.  Thank you for the frank information.  

  • Great post Beth... I could not agree more with your frustrations... when I had a Richter's transformation, I could hear the doors slamming closed for clinical trials around the world...with one or two exceptions... 

    Then colon cancer... skillfully removed... caught early with luck...

    And so back to CLL, my 18 year 'good cancer' friend, with absolute lymphocyte count (ALC) moving upwards and treatment options diminishing...

    What next?

    ~chris 

  • Chris,

    Don't lose hope. Remember, you can't hurt steel. 

    Jeff 

  • Just rusting a way like an old car...  🚘

  • Aren't we all, Chris!  Even before CLL we knew we weren't going to get out of here alive.  Please; that was just a little 'tongue in cheek' humor.  Speaking of humor, who was the man who laughed his way through his disease?  He watched funny movies and anything that would make him laugh.  He wrote a book, but I don't recall his name.  Maybe something for us to think about. 

  • Norman Cousins. There is a Norman Cousins Center for psychoneuroimmunology at UCLA.

  • He's the one.  I believe he laughed his way to good health or at least better health.  Carole

  • There's "old"and then there's classic.  That be you Chris.   B

  • Many people have multiple cancers who don't have CLL.   Many people also live many years with CLL and never get another cancer.  I do not see the contribution such negative thinking makes.  Many people get hit by cars also.   We can go on for days with negativity which is not what a support group IMO is for.  You have to also realize many people with CLL are 65 plus years old and many drink and smoke so there are many factors to  be considered.   

  • I hope this kind of information is seen more as 'being forewarned is to be forarmed' to be honest Landwell. I seriously wouldn't have given that unremarkable mole much of a thought without the warnings I'd read on this site and without being melodramatic, checking it out and finding it was a malignant melanoma probably saved my life.

    I'm in my 50's, have never smoked, am not a heavy drinker and don't sunbathe and I think perhaps I've been unlucky in that my CLL seems to be acting like a 'meeter and greeter' to a host of nasties that it readily attracts. Thankfully many many people do so much better and for that I'm delighted. I'll admit that there are times I read articles on here that could plunge me into a negative mind set but I shake myself off and think, 'their story is not my story'. But I'm still glad I have the information in my armourey in case I need it.

    Regards,

    Newdawn 

  • Certainly we all die one day.  And not everyone dies of CLL, even if they have it.  And drinking to excess and smoking and eating greasy junk food and sitting all day don't help anyone live longer or better lives, still I'll bet we could find someone whose done all that and is alive at 100 and dies in a car accident, or plane crash or earthquake.  

    Some choices we make may make it less likely to get certain diseases, tho not 100%. We rarely have choices of what befalls us disease wise

    It's always the individuals choice what they read and how they deal with that information. It's a personal choice to read or not to read.  

    there are those who want to learn about that which is part of their lives.  That's one reason they read and participate in forums like this.

    Regarding information as negative is always a choice. I'm with Newdawn's approach of knowledge is power.   

    I'm sure no one posts information with the aim of depressing another.

    Those who visit this forum have been touched by CLL., either as a patient or one who cares for someone dear to them.   They come to share and learn and sometimes to offer encouragement  and compassion.  they learn they're not alone, even if they aren't the "same" as another person.   Often they come hoping to find answers they can't find elsewhere. Sometimes Information that even their doctors haven't yet gotten.  That can translate into dealing with something sooner and even saving their lives.  I know it has saved mine, several times.

    Someone once said, "what you don't know can't hurt you". While what you don't know you may not need to know, you won't know that either if you aren't aware it exists.  Another ditty you hear, "no news is good news "  I've found no news is simply no news.  Might be good, or not. News fails to reach us for a myriad of reasons.   personally, I've never found either of those helpful or comforting.  In fact I've seen the shock, disappointment and panic that hits those who prefer that approach.  

    sometimes news isn't what we would like to know, but not knowing it doesn't actually help us.  Yes, sometimes it gets me down to learn what I wish weren't so, but I quickly realize that information may help someone, even if it's me,  and that helps me view it as a good thing.  

    Best,  beth

  • I have had CLL since 2009 and if my doctor came to me now and said it was just a big mistake I would believe her.  Reason nothing has shown up on me except for a slight skin cancer on my nose. So I thank God everyday.  And by the way I'm 65. 😝🎉👍🏽

  • Nice , amen.  I like the positive news.   I am not in  Denial as I have already friended  a beautiful mother of two on this forum that I found out passed way.   That will not be me and if it is someday It was Gods plan for me, I will still tell the next person to stay positive and keep the faith and you will have a better life no matter the Log term outcome.   One day something will eventually take my life but I will never quit living or be negative, I am having too much fun.

  • Read, learn and inwardly digest, then put it to the back of your mind and get on with your life. A positive mental attitude goes a long way to good health, whereas a negative attitude induces bad health. Depressive thoughts are known to affect other health issues such as joint pain, intestinal troubles brought on by constant anxiety turning the gut more acidic and skin condition.

    Spring is here, the sun is out, everything is bursting into bloom, life is reborn. Eat drink and be merry for tomorrow ye may die!!

  • I had some Basel cell skin cancer removed years before my CLL/SLL diagnosis and treatment so I do the annual derm doc body review and I immediately make an appointment if I see anything unusual or new. My long time dentist is a throat cancer survivor so twice a year he is checking me for those symptoms. And my GP treats me like a ticking time bomb, but in a good way. So I get lots of attention..maybe having been treated makes a difference. And since no other cancers (yet) other than Basel cell skin cancer, probably not yet ruled out for future clinical trials. I don't consider I have a good cancer, I just consider I have been fortunate to have responded very well to my first treatment. But it's early. Who knows what the future holds. I need to stay on my guard to give myself a chance at a long rest of my life. Wish I didn't have to but those are the cards I've been dealt.  While the social workers say not to become your cancer, in some ways you need to let the fact you have cancer become how you react to the potential risks. 

  • I am one of those with a secondary cancer....breast cancer diagnosed within 2 years of being diagnosed with CLL.   Fortunately breast cancer was caught at a treatable stage.  I am still in treatment and doing really well.

    Very difficult to find out any information about this combination of cancers.   No one seems to know....not my oncologist, my hematologist or my GP.   They just said treat the breast cancer and once that is cleared up then go back to being monitored for CLL.  The bonus is the chemo for the breast cancer put my CLL into remission.   And the way the drug availability is structured in my province in Canada having had a first line treatment for CLL I am eligible for the second line drugs, i.e. imbruminib (sp?).   There are other factors involved in this but this seems to be the case should I need it in future.

    I am on the alert for other cancers.   Got my skin checked out for skin cancer and have a colonoscopy booked.   Had an ultrasound of my spleen and abdomen.  Slathering on the sunscreen and keeping out of the sun.  I told my GP about the connection to other cancers.   He didn't know this.   He was happy to put the orders in to check for other cancers.  Everyone needs to be proactive in this.   You don't ask, you don't get.

    Sure it is nice to not be negative but it is also good to know that there is a possibility of other cancers when you are diagnosed with CLL.

    You've just got to keep on keeping on and hope that research turns up a cure.

    In the meantime.....

    Enjoying the beautiful spring flowers.   Hope everyone is as well (except you southern hemisphere folks who will be enjoying the autumn colours).

  • Here is a good overview of secondary cancers in CLL, you need to join Medscape to read it...

    medscape.com/viewarticle/56...

  • Great that some people only post  negative post and  some people enjoy reading them.   I for one try and avoid negative post and people .  I suggest this forum has a way to block post from people who only post nagative post.  I believe the medical advise and opinions  should come from the experts.  For myself if the negative post out way the benefits of the positives I read ( thank you those who do write some Great post), I will avoid the forum.   

    If I was 65 plus years old without a Young child at home swimming in every negative thought and fact about CLL probably would be just fine.  But I will choose to continue to only let the positive information in and believe your thoughts today may just be a factor in your future.   

    There is no good cancer but I'll take CLL over most because it's the only cancer I read about  non treated people that  are alive 20 years after diagnoses.   And it's one of the few cancers that have current medicines that are reducing the amount of detectable amount of cancer in the majority of the patience to almost zero.  I will keep focusing on the positive results and if Gods will for me is different, I hope the next person who winds up in my shoes lives every moment they have focusing on the positive results because My days Left on earth are a Hell of lot better for it.

  • Hi

    CClandwell , its not about being negative in the posts , its people giving their accounts of how they are living with this disease and experiencies , most are educational when it come to CLL and can be such a help  .I know every ones disease is individual especially in cll and reading some of the  bad experiences are never nice to read because we may well one day be in that position ,  especially if your on watch and wait and your health is not being effected by cll at the time ......you don't want to see the other side of the coin............... its can be so uplifting when you read the positive posts and things are going well ..it gives every one hope but we really need every ones experiences good or bad and to support each other

    All the best

    stewie

  • Finis vitae - mors.

    We just have to suck it up and enjoy the ride!

    We who are touched by death salute you! :-D

  • My Doctor is well known...Dr. Rai. (Rai staging of leukemia). I asked him is it true that I am at a higher risk for other cancers and he told me NO. He has advised that I keep up on all my Mammograms,colonoscopy, skin checks. So here I am waiting and watching and feeling helpless.

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