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anyone have addictions - drugs or alcohol - and CML?


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#1 survivor77

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Posted 16 January 2011 - 04:24 PM

I have not drank in over 15 years.  But since getting CML, Oct. 2004, I have not been sober.  I've had to take Adivan which can make you altered.  So I'm trying the pot thing.  Just trying to see if there are other friends of Bill W. out there.



#2 hannibellemo

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Posted 16 January 2011 - 07:03 PM

First off, congratulations on your 15 years of sobriety - that is a tremendous milestone! I'm sorry CML has complicated your life in this manner.

Many of us take anxiety reducing drugs for the obvious reason that this can be a very anxiety producing disease. I must ask you if you have shared your addiction history with your physician or if you have shared your health situation with your sponsor (I assume you are a member of AA since you mentioned "friends of Bill W")? I do not have an addiction myself, but a family member does - all I can encourage you to do is make contact with a substance abuse treatment counselor or perhaps a mental health professional who may be able to teach you cognitive behavior techniques to help you deal with the anxiety so you can eliminate or reduce the amount of drug you are taking, if that is a problem for you.

I don't know if using pot for the nausea puts you on a slippery slope or not, but in your situation I would try to get all the professional guidance you can and not do this alone.

Good luck and I'm glad you found this site!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#3 hannibellemo

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Posted 16 January 2011 - 07:12 PM

You know, I just reread my post and realized I didn't offer any practical help for your nausea that you've mentioned in a couple of other posts. Are you using Gleevec, Tasigna, Sprycel? If you are taking Gleevec you can split your dosage and take half in the morning and half in the evening. Do you take it on a full stomach? Do you drink lots of water? Some people find that taking it with carbs helps, others prefer protein. If you do a search in the top right corner for nausea, you may find some ideas that could help you with your nausea.

What has your response been to your drug? Are you PCRU? If so and you've been there for awhile you could talk to your doc about lowering your dosage. You could consider switching to a different TKI if the side effects are becoming so difficult. You have options. It would help us to know more about your CML history.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#4 survivor77

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Posted 16 January 2011 - 08:45 PM

I am on Sprycel 100mg.  dx 10/04. Have reached 0 copies 2 months ago.  Previously, I was on 500mgs.of Gleevec but was really suffering from side effects.  Then I got put on Sprycel right away and felt much better.  But now  I have a lot of gut issues.  It's like having IBS and hungover tummy at the same time.  My pills seem to make it worse and then add more side-effects to my problem, like constipation or diarreha.  I like the "natural" idea of using grass and that it does not give side effects accept good ones.  I just really want to talk to someone who might be in recovery who is dealing with this same issues of being so sick and not enjoying quality of life but also may tread on thin waters.  I've already tried the grass project for over a month now and have had no desire to drink.  That is my worst drug of choice that will take me to a bottom of no return.  but since using the grass route and not have it trigger, oh, I've got to use everything now, I'm loosing it.  Going to relapse big time.  but it's not doing that thank God.  Maybe it's just giving me the help I need and wont interfere with my alcoholic sobriety which has been just over 15 years.  the last thing I want to do is throw alcohol down my stomach, just thinking about that makes me want to puke.

I have two young children and am raising them by myself.  I do have parents and the schools close by.  I have the recovery group to help me on that side and I have this chat room to help me with this other side.  Please feel free to pass this onto someone you know who's in a similar situation.  can contact me directly.  Thanks



#5 hannibellemo

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Posted 17 January 2011 - 07:39 AM

Survivor,

Glad to hear that pot is not a trigger for you - sounds like you have the support you need for recovery. You might also want to post on www.newcmldrug.com. This is also a great site with supportive people. You can post under CML Talk or Sprycel Talk and see if you get a bigger response then you have gotten on this site.

I had IBS to a small degree before I was diagnosed. I loved Gleevec and Sprycel because it was the most regular I had ever been. However, after about a year on Sprycel I started becoming less regular. I found that adding metamucil once a day helps (it also helped with occasional Gleevec "sharts"). I will also take Colace, but I'm going to drop down to the 50 mg. level from the 100 mg.

The great thing about this site is, as you can see, we can talk about most everything!

Best regards, Survivor.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#6 susanlathers

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Posted 18 January 2011 - 01:11 AM

Your post has been on my mind all day.  At first I thought, I have nothing to say.  then I thought, I must have something to share.  I have been sober for 30 years, diagnosed CML 1/05. Gleevec 2 yrs, Sprycel 2.5 yrs and now Tasigna for 6 months.  2 yrs before CML I  had breast cancer so, for 2 yrs was on Geevec and breast cancer chemo drug.  Would I have taken what ever was offered me for relief, hell yes!  In no way am I  saying you shouldn't.  But I will share what my personal fears and experience have been  when it comes to mind altering medications.

   One reason I didn't answer your post right away was I felt like there was much more to your question that you didn't say.  Why are you really asking?  How involved, or are you involved in A.A.?Kind of hard to get support in an A.A, meeting when your smoking pot and taking Ativan for what ever reason.  And you already know how dangerous "secrets" are.  Maybe what you are wanting is someone who has sobriety (alcohol) and uses mind altering drugs and is able to maintain their sobriety and not progress with the drugs??  I would hope there are others who could respond to this also.

   A few years ago while on the breast cancer drug I couldn't sleep and a Dr, said to me that sleep is essential to healing and feeling better, here, take this sleeping pill.  I still take it and am grateful for a fair night of sleep.  I haven't increased it or take it when I'm not suppose to (warning signs as you know).  But I am dependent on it.

   this year I had a resurgance of severe anxiety( which is a depression trigger for me) because of being totally burned out at work and needing to retire and was given Ativan, works great, but I try really hard to only take it when absolutely necessary.

  Am I comfortable with these two meds????  Yes, for the relief.  and, No, because I know enough to know that should they stop working or I can no longer get them and I am miserable and want relief I know alcohol will work and it is easy to get.  We know it will ony work for a short, few hour time, but that won't stop me if I am desperate.  And even after 30 yrs I, as you, know where that will take us. I have heard of so many stories of people who relapsed after taking mind altering drugs. It is a slippery slope.  My best friend for one, on Vicodin.  She had 30 yrs sobriety and took it for legitimate pain and after  a yr of being on it, drank and ended up  in treament again.  She now has 9 yrs this week, but oh, so hard to come back.

   What's the answer, caution, honesty,keep talking about it,  try other solutions. Look into switching to Tasinga to lessen side effects. I do have someone in recovery that knows everything about me, accepts it and keeps me on the staight and narrow.  Do you have anyone (professional to talk to)?.  I am finding I am at a place where trugging this CML road it getting weary. I am old (69),  my heart breaks when I hear of young people like you having to deal with it, especially when there are children involved that you are responsible for.  Some days you just want to escape and be someone else.     But,  we have to be more careful about how we do that escaping.  Nothing wrong with escaping for a while, just have to be sure it is done in a way that will not bring us further damage.

  If I can help you in any way and you want to e-mail me, feel free to do so.

Susan






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