20 replies to this topic

[Fas]

Hi all,

So sorry I have not been up to frequenting the boards for a while.  Have been feeling really badly for the last few months or so.  My newest issue is related to my breathing.  It isn't exactly that I am struggling to breathe; it is more like I have trouble getting a deep, cleansing breath. I reach for the breath and it just is not there.  I have been doing several breathing exercises which help, but this breathing discomfort has now been with me to varying degrees for over 2 weeks.  It is not the first time I have had this, but it usually last a day or so and goes away.  It is also a rare occurrence.  Once a pulmonologist told me it was a form of seasonal allergy and would get better.  It did, but seems worst this time.  Primary said she has done workups on people with similar complaints and found nothing, but was open to being as aggressive as I wished.  At its worst I also get pains between my shoulder blades, so I also got checked out by my cardiologist- everything fine and she does not believe it to be cardiac related.  Mostly, I am getting the stress/anxiety speech.  I haven't been stressed lately and certainly wasn't when this began over 2 weeks ago.   Just woke up one morning and there it was.  Yawning helps and when I breathe through my nose I don't experience the problem as much.    My breathing just seems to be out of rhythm.  I also noticed the last few days that I seem to have reflux and I am getting what I would describe as a slight spasm in my throat, which I think is related to the reflux.   Regardless, I am also entirely too conscience of my breathing and this automatic function is just not seeming so automatic.   I have an oncologist follow-up next week and will of course address this latest issue with him.

 

A little background- diagnosed 10 years ago and have been on 400mg of Gleevec ever since.  The last few months I have been experiencing a symphony of Gleevec's greatest side effects = muscle and bone pain, reflux, skins issues and rashes, etc.  Not a good time.  Oncologist has been very supportive and encouraging that we will figure it out.

     

I truly value the quality of the information and support on this site, and so before I go through a plethora of tests that may well tell me nothing I thought I would see if anyone has any incite or has experienced the same.  Any and all thoughts would be appreciated.

[Susan61]

Hi:  I go through exactly the same thing as you, and its been going on for years.   I was first told it was Asthma, and it does come and go which could be a seasonal allergy thing.  I was also diagnosed as having COPD.  The pain in between the shoulder blades is from trying to gasp for air.  Mine comes and goes, and I do notice it sometimes to be worse in the spring when everything is blooming.  I have been put through all types of testing, but they never found anything.  I have had this problem since  the 70's way before I was diagnosed with CML or been on Gleevec.

    I also have the reflux problem which started right after I went on Gleevec, and its been under control with Nexium

   I also think if I could lose some weight that it would improve.

   Glad you have been a long time survivor with your CML like me. I remember you posting awhile back.  I was diagnosed 13 years ago.

   If they have tested you for everything, and all is okay.  Do not worry about it, because it most likely is a type of Asthma due to allergies.  Hope this helps you feel a bit better about it.

[Judy2]

Hi Fas,

Interesting. I have had trouble breathing for the last week or so, I feel like I cannot get a good breath, I feel like my breathing is a struggle. I chalked it up to being extremely tired but after reading your post I am not so sure. I know my lungs are clear so it is not to due to  fluid. I do not have any pain between my shoulders nor do I have reflux. If this continues I will bring up the issue with  my onc and let you know what he says. Fas, does your onc think it is unusual to be getting an increasing amount of side effects from Gleevec after 10 years on the meds? Anyway, good luck with the breathing issue, I know how unpleasant this problem is.

Judy

[Fas]

Susan,

Thank you for responding.  I appreciate you sharing your experience regarding this issue.  I needed some encouragement and you are always so wonderful at offering support and hopefulness.  I truly appreciate your input.

The first time I had this "not being able to catch a full breath" was after I was first diagnosed.  At that time my hemoglobin level was low, but after I began treatment and my blood levels began to regulate toward normal it got better.  That's why I think checking my iron and magnesium levels might be a good idea.  I have not had any tests done yet, but am planning on talking to my primary and having her run a few blood tests, do a pulmonary study and maybe even a cat scan of the lungs.  I think this will be a case of ruling things out.  Probably something I will just have to learn how to manage.  My bet is on some sort of allergic asthma - I have a lot of coughing at night and that seems to be a symptom.  Hopefully, it will be something that will wax and waned just like the Gleevec side effects.  

God Bless on 13 years - wishing you continued wellness,

Fran

[Fas]

Judy,

Thank you for your response.   It is indeed an unpleasant problem and I am sorry it is one we share.  I think it may be related to an allergic form of asthma.  Just about everyone I know is telling me how horrible their sinuses are right now and we have not even entered spring.  Odd, wonder if all the junk we put into the environment is taking a toll.

The Gleevec side effects come and go.  Sometimes worst and sometimes better.  This has been my pattern since the beginning of treatment.  Either side effects have been bad and gotten better or began mild and got more severe.   This sort of cycling of effects is not usual for me.  On the up side I can go months feeling really well.   It has been a very exciting roller coast ride sometimes - thank goodness I love coasters.   With all the research on tkis and Gleevec specifically I do not think anyone knows the long term effects.  My oncologist has a wait and see attitude on many things that have come up for me over the years.  Documenting and treating the symptoms when I allowed him too- I hate taking meds to mask symptoms when I am not sure of the root cause.    I did not understand or agree with this technique at the beginning.  Then I began to understand that he responded appropriately to things that were concerning, but let my body have time to adjust to other side effects.   Overall we have developed a very good and supportive partnership and working relationship.    The treatment has been very successful and so we will continue this exploratory journey.

Thanks for your support.  Be well,

Fran

[Susan61]

Thanks Fran:  I forgot to say I did have a Pulmonary Function Test, and thats where they said COPD.  Did you ever smoke?  I smoked for years, and I had quit 5 years before my diagnosis of CML.  People that did not know me years ago are surprised when I say I used to be a smoker.  I also used to suffer constantly with Bronchitis.

They have checked my Iron and Magnesium, and they were okay also.

    I hope whatever it is comes down to allergies, which can be bad in themselves.

    Let us know, maybe it will help me and others also.

ALSO WISHING YOU CONTINUED WELLNESS!!

Sue

[Fas]

Thanks Billie.  Appreciate the feedback.  I certainly have considered it as an option.  What I resent is my doctors assuming it as the most likely option without first excluding something physical as the root cause.  I totally agree that is much easier to cope with a problem once you understand it.  I am so appreciative of everyone's feedback as it allows me more options to consider and investigate.  Like most things in life it will get figured out.      

Take care of yourself,

Fran

[chriskuo]

Sprycel has been associated with fluid buildup and more specifically related to breathing, with pleural effusion.

In my case, the fluid around my left lung reduced the size of my lung by almost half.  A smaller amount of

fluid was around the right lung.  It definitely made exertion difficult, even walking at normal speed, let alone

moving quickly.

After stopping Sprycel and taking a diuretic for about 3 weeks the fluid was substantially gone.

I have now started taking Tasigna, which does not seem to cause pleural effusion.

[Fas]

Chrisko,

Thank you for your response.  Gleevec also has pleural effusion listed as a possible side effect.  I do not know however if this is something that happens early in treatment or over time.  Exams by my primary and cardiologist both determined the lungs sounded clear.  However; this week I will be requesting a more aggressive evaluation with scans and blood work.  I have been on Gleevec for 10 years, perhaps it is the culprit.  I am taking this possibility very seriously.  Will be seeing oncologist soon for follow-up and hope to have some tests results to review with him regarding this concern.

I appreciate your feedback and sharing your story with me.

Be well and much luck on Tasigna.

Fran

[hannibellemo]

Wow, I wonder what came first - me reading this post or having my first episode of not being able to breathe deeply enough! Started on Sunday when I stretched in bed (sort of a cobra only laying on my side). I didn't take into account that I sleep on a 5" wedge so that increased the stretch and, twang, something let loose in my right side. That night I started having problems breathing because it hurt on the right side to take a deep breath (thank goodness the pain wasn't on my left side! I would have had to be hospitalized the anxiety would have been so bad).

That was all it took, I started favoring my breathing, forgot to breath, etc. and, like Fas said, all of sudden the natural breath became very unnatural! I haven't died in the night so it must kick in sometimes, I've also discovered that if something distracts me, I'm fine (until I remember)! I have to remind myself to breathe when I'm climbing stairs or I get really winded and then I have an anxiety attack! (That sounds so pathetic when I read it back to myself).

Anyway, I have my "big" doctor appt. this Thursday with BMB and PCR. I'm sure that adds to the anxiety. Maybe I'll find something out then. Or, maybe it will magically disappear as soon as I walk out of the bldg. and head to my car!

Pat

[Judy2]

Hi Pat,

Good luck on Thursday, please let us know how it goes.

Judy

[GerryL]

Hi Pat,

Wishing you a good result for you PCR test.

[hannibellemo]

Thanks, Judy and Gerry! Trust me, you guys will be the first to hear!

Pat

[GerryL]

I look forward to doing a happy dance with you.

[Susan61]

Hi Pat: I just saw your post about what happened.  It does not sound like anything serious, but you pulled something because of the way you were laying down.  Its been 2 years this past Oct that I just moved in a funny way, and I felt a pull in my neck.  I could not straighten it out for days, and then  developed a lump on the collarbone a few days later.

It just popped up out of nowhere.  I went for tests, and it turned out I had a Calcium Deposit forming on the collarbone.

Its still there, and if you look closely at my neck its visible.  ITs amazing what our body does.

I hope they make you comfortable when you get the BMB, and let them just check out some other things with the breathing problem.  ITs too much of a conincidence that you stretched and then could not breathe.

Please let us know how things go.  The other thing is that anxiety can do so much to the body, because it tightens up all the muscles. I suffer with anxiety issues constantly.

Susan

[Fas]

Hi Pat,

Thank you for sharing your experience.  Sounds like you pulled a muscle and may have begun to unconsciously control your breathing to minimize the pain.  I do have some Costochondritis pain in my ribs and chest wall and so I maybe breathing shallower to control the pain - definite possibility.  I find that when I breathe in through my nose and out through my mouth with my lips pursed I am getting a much fuller more comfortable breath.  I am having some tests done to rule out lung issues and while I wait I am dealing with this new adventure best I can.

   

Best of luck on Thursday and wishes for good results,

Fran

[Fas]

Susan,

I have never smoked.   Just had a cat scan of the lungs done last night and waiting on the result.  Is it just me or doesn't it feel like we spend years of our lives waiting on results of one test or another? LOL.  I have always thought one of my greatest challenges in life was my impatience - well I guess the universe is teaching me patience.  Recent blood tests showed magnesium and iron level were good.  I will update this post when I get the scan results or have some resolution.   

Thank you,

Fran

[Fas]

Thank you all for sharing your experiences and suggestions.  I am now better able to address this with my doctors.  Most appreciative of the input and I will repost on this discuss if anything interesting comes up in my tests results. 

Best wishes,

Fran

[hannibellemo]

Hi, all!

I just wanted to give an update on the sharp pain I experience when taking a really deep breath. I had an X-ray this morning and saw my local onc.; he is going to have the radiologist review the image. IF I have a PE it is very, very small, think the very pointy tip on the right side is obscured - certainly not large enough to cause any symptoms. Also, because my pain is so close to my pelvic girdle he is inclined to think that it may be due to some muscle irritation. I'm very short waisted so I don't know if that would make a difference or not, in that my diaphram and rib cage at the lowest point is pretty close to my waist, too (yet another thing to thank my mom for) .

At any rate, it is nothing that he would make any changes to my medication on at this point but it will probably bear following. I see him again in about 5 weeks for my regular appointment.

So at this point, no news is...no news!   At least it isn't bad news!

Pat