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This topic contains 12 replies, has 10 voices, and was last updated by  Bridgette Perkins 4 months, 1 week ago.

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    Dear Friends,

    My heart broke into a million pieces yesterday as I found out that my dad continues to secretly smoke without me knowing. Here I am, trying to save my dad’s life or at least find the best treatment plan out there for him, and I find this out. It is so frustrating when it is my father that is doing this to himself!

    I tried to do some research on continued smoking and MDS but it was difficult. I went back through some old posts and smoking and was wondering if anyone out there is in the same situation as I am. I know Synestry mentioned that her mother in law has chosen to continue to smoke.

    My question is, how does smoking affect MDS? I know couple of the members family members may have been a smoker previously but quit about 10-15 yrs ago. But how does continued smoking affect MDS? I know it affects the blood, but that’s about it.

    Second, is anyone else in the same situation as me? Can you please share your experiences and how you are approaching this matter? I don’t know if I should come off angry, sad, frustrated, all of the above to my father. I just wrote him a letter yetserday telling him that I know, but have not confronted him in person yet. I don’t want my mother to know because that will just put her over the top.

    Thank you for all your comments in advance…..



    Hi June, I am sure any of the doctors would tell your Dad to stop smoking even without the MDS. Can’t imagine that it would not be putting him more at risk. Bob smoked prior to being diagnosed, we both did, He was so devistated by the diagnosis he quit cold turkey I don’t know how he did it because he smoked more then I. But MDS really scared him, Even when he had a Small TIA years ago it did not stop him.
    It was harder for me even though I knew I shouldn’t be for Bob’s sake but the nerves etc just got me. Especially at the beginning So I understand how hard it is for your dad . It is a terrible addiction.
    I finally went to a hypnotist and stopped, However you really have to want to stop for the hypnosis to work.

    Now if someone passes us that is smoking it really bothers Bob. I hope you can convince your Dad, however they are the ones battling this disease and sometimes no matter what we say it has to be there decision.
    God Bless, I will keep you both in my prayers.



    This happened to our family last year. My dad was first diagnosed with MDS in Sept 2005 and he still didn’t stop smoking.

    He didn’t want to stop and then he was diagnosed with tuberculosis (Feb 2006) and he obviously had to stop then…

    So after being transfusion independent for a couple of months and his TB was under control and the doctors were happy, he started smoking secretly again some time September/October 2006 and it devastated me and I know EXACTLY how you feel choijk.

    When I was younger I thought smoking was cool (I was tiny then – 8 or so) but when I grew up I realised the harm it did and resented my father for smoking. He wouldn’t smoke in the house which was a rule for him but he’d go out and smoke constantly and who knew how much he smoked in the office.

    Over the years we had tried to stop him.. bugging him about it or showing him pictures, articles, asking him about it but he was always so stubborn and after awhile he got really annoyed at us picking on his habit.

    I always had this fear that it may cause my father much harm and when he got MDS and I read up about how benzene and smoking could be linked to MDS, I was so sad.

    When my father didn’t stop initially I prayed then for something to affect my father so he’d stop smoking… and God, I believe, answered my prayers ‘cos my dad caught TB. Much worse and you’d think it’d change him.

    Even when he started smoking again in Sept/Oct 2006 due to work stress or whatever excuse he gave… he never found it harmful. He used to sneak around us but we somehow picked up on it all the time. We asked him about it but he denied it.

    Stress was also a problem for my father… and a lot of things were happening at his workplace from Sept-Dec 2006 it may have taken a toll but I guess it didn’t help with smoking either.

    I would think he’d treat his lungs a little bit better after contracting TB and almost dying but obviously, he has short term memory.

    So he started smoking again Sept/Oct 2006 and by mid-December 2006 – January 2007 his MDS had become worse and Thalidomide had stopped working… his counts had gone haywire and suddenly he had AML. So he stopped smoking after this.

    Then, he went through induction and then caught bacterial and fungal pneumonia in his right lung (the same lung that had TB) and it almost killed my father twice.

    You can’t discount smoking from all of this. But thank God, my father’s doing better and his left lung is in decent shape.

    My fear is that he might have forgotten all the suffering he went through and start smoking again.



    There is hope.
    I was a heavy smoker for years and figured I would die of a smoke related disease…I just couldn’t quit. Even my doctor said that cigs were worse than heroin. I was smoking during the first 10 years of my MDS and had no desire to quit.

    Then….a miracle happened!!!!!!!!!!!!!!!!
    I had pneumonia…double pneumonia and was hospitalized for a few weeks and in a coma.
    When I awoke, I had lost all desire for cigarettes. I still can’t stand the smell of smoke on people. It was truly a gift from God. It’s been 3 years and I have not even had a puff.

    Sooooooooo….it can happen!




    hi Frankie,
    what do you mean by “the first 10 years” of MDS? What kind of subtype do you have and what chromosomal defect…?
    What kind of therapy are you undergoing?
    Please tell me beside the smoking topic.

    Smoking is an addiction, some people cannot quit…don’t be too hard to your father, June, how shall he cope with everything. Even if everybody knows how harmful cigarettes are…




    I knew someone in college who told us he had been on every drug imagineable. He said it was harder to get off of nicotine than it was to get off of heroin or cocaine.

    A coworker of mine used to be a chain smoker. She tried lots of different things to quit smoking — accupuncture, hypnosis, sheer will power, chewing gum, etc. What finally worked for her was the nicotine patch, combined with lots of will power. I’ve never smoked, but from what I’ve been told, you have to want to quit for anything to be effective.



    I have MDS RARS with 5q deletion. I am 65.
    I have been on Revlimid for the last year and transfusion free. smile
    Before that I was having transfusions (2 units) every other week.
    I was diagnosed about 14 years ago.




    Thanks for Bergit’s answer. It helped me too. You were just a little older than I was at my DX of 5q-. Sounds like you are still going strong.

    Smoking is hard to give up. I can’t seem to stay quit. I am shooting for quitting again on July 4.



    Alice S

    Dear Friends
    I am not the one with MDS, my mother is, fortunately she has always lived a very healthy(?) lifestyle, never smoked and cannot drink! Now I am trying to get her to drink just a wee bit of Red Wine sometime, for the antioxidents!

    Whilst reading the posts I thought I would just share how I managed to quit cold turkey, 16 years ago and never been tempted!

    My husband had two heart valve replacement operation, doctors messed up the first operation and post operative care, teflon mitral valve became infected and had to be replaced and a healthy aortic valve suddenly gave up too (in two weeks it went from healthy to non existant.) All went well for two weeks after he finally came home all of 63kg! And then he got sick again! That was it, I couldn’t cope anymore, two small children who were petrified of their ‘father’ whom they just recognize, we had just returned to South Africa from Denmark and had moved into a new house.

    I prayed and made a pact with God, I give up smoking and my husband gets better! Recovery was immediate! Well 16 years later he is still here with us, we’ve had our patches with drug resistant pneumonia, overdose of blood thinner, waran (warfarin). Was not always plain sailing but I know that he will always bounce back.

    I gave up chocolates for my mother………

    If we really love someone, just as God loved us, that he sacrificed his son, then I suppose to give up smoking is small fry.

    Take care everyone.




    Believe me. I understand.
    I was smoking close to 3 packs a day…Kools.
    The last time I tried to quit was about 17 years ago. I just couldn’t. I went 3 months without smoking ….everyone told me that if I could go 3 months, I would have it licked.
    I hope you have the same miracle I did.




    Prior to my dad being dx’ed with MDS he had a quad bypass. That experience made him want to change his lifestyle. He wasn’t a smoker but never exercised and had a terribly poor diet.

    The quad was in 2000 and for a year he didn’t eat enough. He picked up on what was healthy, easy to make, inexpensive and only ate a few various items. That choice wasn’t healthy either. A year after surgery he began eating much better….making better choices and exercising daily. He was feeling & looking great.

    As time passed he eventually stopped exercising. Not a good choice but in his defense he had chosen to walk and ended up needing surgery on both feet (which he refuses to have). Long term walking as exercise for him is painful and so he doesn’t. He could try other forms of exercise but for whatever reason he won’t.

    His healthy eating has slipped way off. He still eats healthy things but has added not so good choices to the mix and sometimes eats too much of the bad stuff.

    For about 4 years I was the food & exercise police. It was so exhausting for me and strained our relationship. I was calling daily to see what he was eating….how much he weighed….how long he stayed on the treadmill. I know it more than likely bugged him even though he never said anything. We both knew I was doing it out of love & worry.

    MDS struck last year. I still worry about what he eats/doesn’t eat and secretly cringe when he talks about being out and hitting a fast food drive-thru. But you know what? None of what I say matters. He, (like everyone else) will do what they want no matter who tells them what.

    Being mad at your father will only stress you out, hurt his feelings and make you both miserable. You both need to focus on the bigger picture. He needs not to worry about disappointing you and do all he can to fight this disease. You need to be there for him in any way he needs you to be—without judgement.

    Smoking is terribly bad for an otherwise healthy person. It for sure is not doing him any favors in his current condition. But the reality is…’s not your call. He needs your support, not your anger, no matter where it is coming from. I know why you feel like you do but you can’t physically force-blackmail-belittle anyone into doing something they don’t want to do. All you can hope and pray for is that he decides to make the decision to stop on his own, for his own reasons. Telling him how you feel and why is one thing he needs to hear. He is an adult and I’m sure he knows that smoking is bad.

    Take a deep breath, slow down with the worry and enjoy your dad for as long as you have him…..smoking or not. Stress isn’t going to work in either of your favor.



    Thank you for all your replies. It just feels so good to come here for support and advice from caring friends. I know that ultimately that it isn’t within my power to have my dad quit smoking altogether, it is nice to get the support that I need right now. From the bottom of my heart, thank you ALL again. It REALLY made me feel better.


    Bridgette Perkins

    Frankie.I have mds 5q
    Do u live along.time? Im abt to start the same medicine

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