8 replies to this topic

[MCPO]

Obviously, the first goal with TKIs is to get a grip on CML.  I am curious if there is a "safest" drug of the TKIs in terms of serious side effects.  I can't shake anxiety about heart complications and sudden death with Tasigna.  And, now that I know that Sprycel carries the same risk, I am terrified to be on Sprycel again, too, which I stopped because of bleeding episodes.  I've been on this CML journey for 4 1/2 years now.  I was on Sprycel for most of that time and while I was slightly anxious about Pulmonary Hypertension (especially since my daughter has secondary PAH and I know too much about it), I never had panic attacks.  With this "sudden death" risk and verbage, I am having panic attacks and then am concerned that a panic attack is going to trigger a heart issue.  I'm terrified to take any anti anxiety medications because it seems like everything has a qt syndrome risk and we don't know enough about combining these drugs in my opinion. So, obviously, I'm just a big mess.  

 

Getting to my question...of the TKIs out there, is Gleevec the safest when it comes to very serious risks of these drugs?  I have an appointment with my oncologist on Wednesday and don't know if my anxiety levels is going to work with Tasigna or not.  Sprycel scares me just as much now that I know it also carries a long qt syndrome risk.  I almost didn't post this because I don't want to feed anyone else who may be struggling with anxiety like me (because a post like this would make me more anxious), but I would love some encouragement from those of you who have been able to shake it off and some input on which of these TKIs is actually the safest.  I am 32 and have a hubby and small children who need a less anxious mama these days.  Thanks!

[mlk210]

Oh, I'll be following this since I feel the same way. I'm terrified of what the TKI's are doing to my body. I too have wondered if Gleevec is the safest and should I have started on that instead of Sprycel, or could I go to that when I become PCRu. I too have anxiety when I think about side effects! Thanks for bringing it up MCPO!

[rcase13]

Yeah, I will be interested as well. I am on Tasigna and I think it is safe to say that Tasigna is not the safest. I would think it would depend largely on your body's acceptance of the drug. But what do I know! Unless it is a server in a datacenter I know very little about anything!

[Trey]

You are worrying about a 1% issue.  They are all safe enough.  Generally the goal should be to first get the CML to very low levels then maybe decrease dosage for the longer term as "maintenance" dosage.  That is what I have done.  Also, maybe more will be able to stop TKIs completely once the dynamics are better understood.

[Damerault]

Have you thought about treating your anxiety? I had a lot of anxiety when I was first diagnosed and Yoga and meditation worked wonders for me. That and a little Adavan. Treat your anxiety and your CML.

[MCPO]

Thanks Diane (and everyone else)!  I'm going to talk to oncologist more.  I agree that treating the anxiety is probably what I need to focus more on right now since I can't change anything else.  Since it's a sudden onset and I did not struggle with panic attacks/anxiety like this before, I don't know if it's maybe the anxiety itself is being caused by tasigna.  I'm glad I'm already scheduled to see oncologist for a followup.  Thankful for this board.  <3

[Pin]

I really appreciate all the things you are saying 100%. I'm super anxious about treatments, and hypervigilant about symptoms and the effects of combining medications (I just started a post this week about it!). But, I have finally come to the conclusion, that the anxiety is not good for my health either, so if I can treat that, then I should. Doctors do know a bit about combining medications, more than we sometimes give them credit for.

 

You're absolutely right, we can't change that we have to be on TKIs, but we can change things around it to live a bit better. Glad you are seeing your doctor soon.

[Billie Murawski]

Hi MC,

It's perfectly normal to feel the way you do. I was dx aug 2007, and put on 400mg Gleevac and first of all just accepting the dx almost threw me over the edge then to have to take a medicine that would cause God knows what, I seriously considered not taking any meds. Very selfish on my part considering I have family and children and grandchildren. I have been on Gleevac and Sprycel G did the trick I reached pcr but I had a lot of stomache problems, so I went on Sprycel, Yes there are side effects but our bodies do adjust to them the best they can, Like Trey said all the really scary side-effects are in the 1% zone. He also told you that they are becoming more familiar with how these drugs work, and they are finding out we can take much lower doses once we reach pcru. That is how I got down to 20 mg Sprycel. I'm very fortunate to have an onc who works with me and has agreed to lowering my dosages over the years.

I believe there is a law now that if one medicine causes a side-effect the drug companies have to list it. Look up baby aspirin if one baby had a s-e from it they have to list it. I have a pill book and I read up on my meds but I never read the side-effects, because I'm crazy enough to have them all within 5 minutes guaranteed.

When I was in my 20s a neighbor showed me a medical dictionary she had, I looked up a few things and within 10 minutes I had 2 months to live, who would raise my babies? What bimbo was going to go after my husband, I can't afford to die, we have no money ,etc.etc.

So I have pretty much gotten control over my fears of changing meds (says me who is on 20mg of Sprycel) but that could change any day. Just because one person has a certain side-effect doesn't mean you will.

In my case I needed help to cope so I am on an anti-depressant (cymbalta) helps with joint pain too, and I have xanax I can take if my anxiety gets to bad. I don't take much because it makes me tired but it sure is nice to have an anti-anxiety med when you really need it. Talk to your doctor about it. Life itself can cause you much more anxiety then cml ever can.    Billie

[MCPO]

Saw my oncologist.  We are going to work on anxiety right now.  Just like after my initial diagnosis, I calmed down after I got "used to CML."  I know I will "get used to Tasigna" and these fears will go on the back burner soon, but in the mean time, we're going to treat the panic attacks as they come until I get back to the place I was before I knew Prolonged QT syndrome existed.  I emailed my MD Anderson oncologist (who many of you see) and he gave me some guidance on frequency of ekg's.  He doesn't do them if things are looking normal and there are no symptoms and I genuinely trust him.  My local oncologist suggested we do ekg's quarterly just to help my anxiety and give me a little more reassurance, which I appreciated.  I think we'll do them quarterly until I chill out and them maybe biannually therafter. So, I'm feeling better, but am glad to have my "in case of emergency, break the glass" prescription if a panic attack arises again.  I think panicking about the next panic attack has been a lot of my anxiety.  Soooo....onward!