12 replies to this topic

[Mayra]

So yesterday I wake up and my armpit is sore and feels bruised on the inside.  I can't feel any swollen lymph nodes, it's not hot, I don't see any visible streaks.  It just feels bruised when my arm is against my body or I press down on a certain part. 

I don't know how I could have hurt it?? I have a 34lb. 3 year old that I carry around and pick up with that arm sometimes.  I also practiced cart wheels with my 7 year old on Sunday.  

I just don't want to live with this constant worry of another Cancer.  Does it ever go away?  I called my doctor and they said to keep an eye on it and call them if it got red/hot.   Could this be a passing Sprycel side effect? Strained muscle?? 

Any thoughts?? You guys are always a source of comfort so any advice would be appreciated.

[GerryL]

For me, I think once you are diagnosed with a cancer, you are more aware that it can happen to anyone.

One of my side effects from Gleevec is folliculitis, and I occasionally get one under my arm. It starts off as a sore spot and then turns into a hard lump a day or two later. Probably not your issue, you may have just hurt something without realizing it.

[Badger]

I'm not a doctor, but I diagnose you with a moderate case of cartwheelaritis, with a very slight case of hypochondrodism. And, at least for me, every time I used to feel anything out of the ordinary, I thought the worst. Once I stopped googling every symptom I ever had, I stopped worrying as much, since every symptom inevitably lead to some dreaded disease.

[CallMeLucky]

Mayra,

I have been on Sprycel since Nov and I have this exact same side effect.  As soon as I read your post I looked to see which med you were on because I knew it had to be Sprycel.  I've heard of one or two other people describe the same thing.  I get the same pain under arm and it is typically aggregated by physical activity that engages muscles in that area like push-up or bench press etc

I can tell you that I do not believe this is related to anything else I firmly believe it is a side effect of Sprycel.  What I can't tell is if it is just something bothersome or if it something that will cause an issue in long term.  Reducing from 100 mg to 50 mg has helped make the problem very minimal which is another reason why I know it is Sprycel related.  My doctor's current opinion is the that it is muscle pain while acknowledging that we don't know exactly why it is manifesting itself in this way in this particular spot.  I find it odd that I only get it on left side with no issue on right side.

[Mayra]

Thanks everyone!

I do think its a muscle/nerve now.  This morning I woke up feeling better and by tonight I'm feeling it again.  It's nice I can blame it on Sprycel.  Waiting for 5 month PCR next week.  Hopefully if all is well I can ask the doc to lower maybe to 70? I do think I'm a bit of a hypochondriac at the moment.   I have not resumed my exercise routines and now I'm afraid if this is what happens if it stretch my limits a little. 

Still waiting for my thyroid test to come back.

Now for the CML positive:

I've lost a total of 38lbs so far.  I have not been this thin since before I had my babies  almost 8 years ago.

My skinny clothes is now loose:)

My facial hair is now blond so I don't have to wax (I'm Mexican)

I have not had an asthma attack since January

My hair is thinning (it was so thick I had to always asked my hairdresser to thin it)

[Tedsey]

Dear Mayra,

I also lost a lot of weight.  It was a mystery for 3 years until I was dx.  I had never been so skinny in my life!  As for hair, I think it yours will grow back.  I have always had real fine hair, but after the shock of diagnosis, I was thinning.  Stress can do this.  At the 5 month mark I would guess you are still reeling from the diagnosis (and for some reason it seems a million times worse when you have little kids who depend on you---mine were just a couple into 1 and 3 when I was diagnosed).  Wishing you good luck with your next PCR.  Let us know how you are doing if you can.

Take care,

Tedsey

[beverly]

I have no idea yet here's why. I feel like a guinea pig for the drug companies. This would be my 2nd tap. I don't want to have it. Was not ill before I went on Sprycel so my patience rights are I can make my own decisions about my care. I know how my body feels.

A note from my doctor yesterday.

Beverly

Dr Warman is a good doctor

Besides she's also a Pulm doctor

I did talk to her Friday and she says the effusion is back

Unilateral effusions in this situation is worrisome for lung cancer

We can change your cml drug but we still need to make sure this is not lung cancer

So go get the pleural tap she recommends

Also we need to see you this week after tap

So call or email the scheduling gals to make an appointment to come in

30 min visit

You will end up short of breath in ER if you don't get rid of the fluid in the lung

Rama

[alexamay09]

hey mayra - no it doesnt get better. i was dx with breast cancer in 2009 and cml last September! now i get over anxious about every symtom wondering whether the first cancer has metastasised and the issue clouded by cml!! ive had worrying side effects from sprycel 140mg, and i regularly get spots and pain under my arm. unfortunately i gained over 22 lbs since dx and am horribly fat for my tiny height! ive lived with cancer now for 4 years and never really forget it for long. having said that it has been a great gift in strange ways and utterly life changing! g

ood luck and keep well    alex

[Susan61]

Hi Beverly:  Do not think about lung cancer.  Sprycel has done this to many others, as it is one of the side effects.

I doubt very much that you have lung cancer, and that note was uncalled for.  You do not send a patient a note saying it could be lung cancer.  This is something to be discussed in the doctors office when you see her.

I am getting the impression that this doctor is not up on things like she should be.  Are you saying this is a Pulmonologist/Oncologist that you are seeing?

     It does sound like you might need to switch off of the Sprycel, but I would be looking for another doctor if this is the way they do business, and if this Rama is just a nurse or office help I would bring this note to the doctors attention.

    It is hard once your told you have cancer, because other illnesses do come up for us.  We start to think the worst, and it could be something very easy to treat.

  Please keep us up to date.  I think your going to be okay.

Susan

[Susan61]

Hi Mayra:  I have had that type of discomfort, and I am not even on Sprycel.  We get all kinds of aches and pains.  You did say you exercise too.  That could have caused this.  The way you describe it,sounds just like what I was having for awhile.  I went and had my Mammogram to be sure it was not related to my breasts etc.  Everything was okay, and the pain is gone.  You just said you have not had a Asthma attack, and you do not have to wax.  Well, that is a positive thing isn't it, so think Positive with everything else too.

Susan

[beverly]

Thanks Susan I don't think it is lung cancer on top of CML either going to Shands Hospital doc's in Gainesville from now on lost faith in all the ones here.

[beverly]

Thanks Susan I don't think it is lung cancer on top of CML either going to Shands Hospital doc's in Gainesville from now on lost faith in all the ones here.

[MomMom]

Hi  Maya,  (shout out to Susan61)  I have been away from the 'boards" for a long time. I checked in yesterday to see what was going on.  You have my prayers and CML Love and Support.  Susan offers the best encouragment you can ever get.  My CML has been kept at bay for about 3.5 years.  I was diagnosed 7/08 and went on Gleveec immediately.  The side effects from it are still with me and I saw a gastro doc last week.  He is doing tests to see what's going on but it looks like Gleveec may be the culprit.  If so, he and my onocologist will make a decision for me to go off G for a while.  I dread it because I have had such good continuing response to Gleveec AND I do not want to switch TKI's.  In the past 4.5 years I have had every side effect listed on the crimp sheet that comes with the Gleveec Rx.  Lost hair, eye lashes, brows, don't have to shave any where anymore, etc. and the uh Huh places are lovely .  I am praying that you find comfort and peace within.  It is normal to think of CML everyday. Please keep in mind that you have it, it does not have  you.

God Bless,  Kay