14 replies to this topic

[Kali]

I have read past posts about shortness of breath.
I am on Sprycel 100mgm per day since July 2014. Reached MMR in 3 months and have been undetectable or near undetectable for about 9 months at least.

I have been getting shortness of breath even with SATS at 98 and heart rate in the 80's or 90's.

I have one lung since 1977.

Last exam internist said my air was moving very well but did a lung exray to doublecheck everything.

He called back and said I either didn't take a deep enough breathe or I have a very small pleural effusion. I have never had anything like that before In my life.

I called onc and he will have me checked with exray in a month again. Otherwise, he said just keep taking my TKI.

He is a nonbeliever of reducing dose which concerns me. He thinks mutations can happen.
Some of you explained this is old school.

He is a believer in cessation completely in the future if I am eligible.

If this turns out to be pleural effusion and his solution is steroids, water pills and inhalers, who is the best CML expert that I can go see for second opinion. If I have to take off work and fly there, I will.

If the lung exray is clear, why do some struggle with shortness if breath on the drugs?

[Kali]

I forgot to add that I have rarely had to use an inhaler or steroids during my life. I have been on no meds except Zyrtec until CML. I don't even take Tylenol for headache

I dread having meds pumped into my body. I have also not ever needed oxygen to function

I have done quite well with one lung. I am concerned I am heading down a slippery slope. I want to be proactive and reactive to this new problem.

[scuba]

Kali wrote, "He is a nonbeliever of reducing dose which concerns me. He thinks mutations can happen.
Some of you explained this is old school."

 

You need a new doctor if he believes reducing dose causes mutations. He is also out of date regarding dose. Sprycel, in particular, is very potent. Dr. Cortes (M.D. Anderson) did not even start me at full dose. He started me at 70mg. and then reduced to 20mg (where i am now) because I responded on the lower dose. I wasn't even near MMR when he did that. He told me, "Lowest dose is best if it works". It's the opposite thinking of your current doctor.

 

As you have only one lung, I would be most careful regarding Sprycel and pleural effusion. Lowering your dose (even as low as my dose) is the smart way to reduce your pleural effusion risk as you are already at or near PCRU. If you decide to lower dose, you would need to be monitored monthly (PCR)  to 'verify' that you remain below MMR and ideally no change from where you are now. You can always increase dose if you lose response. But I suspect you will be fine.

 

(By the way - if you do have a pleural effusion, the treatment is to STOP taking Sprycel completely until the P.E. resolves. And then re-start on a lower dose. Because you are near PCRU, you have time for P.E. to resolve without any adverse CML relapse. CML is a slow disease when in chronic phase at PCRU. It would take months for it to re-establish if it is going to grow again. Be vigilant on the P.E.)

[Trey]

Xrays cannot see all pleural effusions, especially at the lower lung tip.  You probably have a small pleural effusion.  Symptoms are sometimes better indicators than an Xray for this issue.  Stopping the Sprycel for at least a week would be the best idea. 

[Kali]

Thank you Scuba and Trey for the information. I appreciate it!

[hannibellemo]

Kali,

 

Feeling like you are not getting enough oxygen is the pits! I also have that feeling on occasion. My first pleural effusion was after 2.5 years on 100 mg. Sprycel. It was so small my doctor was surprised that I had any symptoms. He didn't take into account that after 60 years I was pretty well attuned to how it feels to be well oxygenated!

 

Small effusion or not, the worst mistake I made was not stopping Sprycel immediately, two weeks later the effusion was much worse and I was having serious problems breathing. I was the one who suggested steroids after the diuretics did nothing and they helped tremendously. Like you I never took anything until I had to take TKIs on a daily basis but, that is no reason not to take something that may help.

 

After the effusion resolved (almost 9 weeks) I restarted on 50 mg. and have been there ever since, almost 5 years. Can't say I have never had another effusion because the symptoms have been there, but nothing has ever shown on an x-ray. I have stopped Sprycel for a few days, or with the most recent episode, cut my dosage in half. That works for me. I've been PCRU or very low for almost 18 months.

 

Good luck!

[Kali]

I am torn about just stopping Sprycel on my own for one week. I see my onc Jan. 3rd and will get blood tested.

if I do that, I know he isn't going to supportive of reducing dose going forward. So then what do I do. Thaf is where maybe going to a cml expert for advice might be what I should do and my onc can work with him.

Can the pills be cut in half? The bottle says no.

[scuba]

I am torn about just stopping Sprycel on my own for one week. I see my onc Jan. 3rd and will get blood tested.

if I do that, I know he isn't going to supportive of reducing dose going forward. So then what do I do. Thaf is where maybe going to a cml expert for advice might be what I should do and my onc can work with him.

Can the pills be cut in half? The bottle says no.

 

Given your current PCR level, you are at near zero risk (in my mind zero risk) of CML progression if you stop Sprycel for a week. Pleural effusion is a greater risk for you right now. What city do you live in? Someone can suggest a CML expert for you to see. Pat's experience cited above is a good guide for you.

[Kali]

I forgot to add my shortness of breath comes and goes.

Also I appreciate your feedback. This is such an awesome discussion board. It has been so informative and that helps so much in dealing with CML!

[SandyG353]

Hi Kali.

I believe I read somewhere that Sprycel causes pleural effusion.  Someone that I know was taking sprycel and had that problem.  He was switched to Gleevec.  Were you ever on Gleevec?  I believe that it has less side effects than sprycel and tasigna.  What does the group think?  Being your oncologist doesn't want to reduce your doseage, perhaps you can ask him about changing to Gleevec.

[Kali]

The only one I have been on is Sprycel and I haven't had any side effects from it other than mylosuppression when I first started taking it but got over that in about two months.

It is confusing to say the least when they say I either didn't take a deep enough breathe with the lung X-ray or it is very small pleural effusion.

Shortness of breathe isn't all the time. It comes and goes. I have noticed a faster heart rate sometimes with the shortness of breathe

I will talk to my onc about gleevic and also about reduced dose of Sprycel. I see him in two weeks. I like the idea of stopping the TKI for a week but I need a game plan after that.

Gleevic scares me because of what I read about it affecting kidneys. I had some concerning GFR numbers this summer but took the advice to drink more water and my numbers have been great since then.
Gleevic also scares me because of all the aches and pains and edema I read on our discussion board.

It has been nice having no side effects with Sprycel.

Thanks for the suggestions.

[Trey]

If you present the same information to your Onc he should stop the drug.  You can either wait for permission or do what he should do anyway.  But you will not drop over either way.  So it is just a choice to be made. 

[Kali]

Any thoughts about:

Once I I stop the drug for a week then is it better to switch drugs completely or stay on reduced dose of Sprycel?

His nurse told me I can do what I am comfortable with doing.

[Trey]

Better to resume with half dosage, then work back up if needed.  But if PCR remains PCRU then longer term lower dosage would be advisable.

[Kali]

Thank you to all for the input and suggestions. I appreciate all of you so much!