28 replies to this topic

[LoriC14]

Caroline, I so appreciate anytime someone can make me laugh about this insane disease.  And you did, thanks for that.  I still remember the day I was diagnosed - never heard of CML and I felt so alone, only to discover I really wasn't that alone after all. I truly feel so thankful to have somewhere I can spout off about whatever new things I discover about CML and how it or the Sprycel effect me this month!  Ah for the days when a pain in my shoulder blade was just a pulled muscle and not possibly a new side effect to get paranoid about.  Thanks to you and everyone else for listening and providing the sounding board...

[mariebow]

Lori you have pain in your shoulder blade, I have been having that for a year, have you told your dr about it and what did he say.  I have not told my dr. yet.

[LoriC14]

Hi Marie,

The shoulder blade pain just started the day before yesterday, so I haven't called the doctor yet - waiting to see how it progresses.  It was excruciating the first day, but hasn't been as bad today.  First felt like I had a knife stabbing me and it was difficult to breath, but now it is more of an ache.  How has your's progressed?  Curious as to why you haven't spoken to your doctor yet... I can handle the leg, back and hip pain - but the shoulder pain is horrendous, how have you been surviving?

[mariebow]

It does not bother me all the time just comes and goes, like I will go for a week without the pain.  And you know I really do not want to do the X-ray thing again.  I have taken so many Xrays for the ribcage,hip joint, pulled muscles etc.   I see it as long as it is not every day, I will endure it a little longer.

[LoriC14]

I totally get that - you just treasure those good days when the pain isn't there or not so bad and you feel like life is almost normal again.  But I think I will mention it to my Hematologist when I see him as a new 'site' for the pain - he thinks I have arthritis... can you even get arthritis in your shoulder blades?  But then it moved back to my knee.  I sometimes feel like an idiot when someone asks how the pain is from the last time we talked - and I have to explain, it isn't so bad in my shin anymore, now it is in my shoulder.  Feel like I sound like a lunatic - kind of like where is Waldo for my pain.  Question to all - I go to a New York Oncology Hematology office in upstate NY - from some of the posts, seems like there are certain doctors out there more than one of you are familiar with that seem to be very up on the CML news.  Anyone know of a doctor in upstate NY?  Just found out my doctor canceled my 3 month appointment - he doesn't think it is really needed since my levels are good and 6 months is soon enough - but I really wanted to talk to him about lowering the dosage.  When I mentioned that, he said we could talk about it - the next time I come in.  Another 4 months to wait.  Sorry for the rant, just wondering since I see specific doctor's names mentioned here.

[jrsboo]

Dear Lori,

You should pose a question to the whole board for a new doctor in your location.  Having lived in NY most of my life but now WA, I would highly recommend going all the way to the City, it is only 4 x a year and I would insist that the doctor keep your 3 month interval.  Unless you have been undetectable for years, that is the correct interval.

Caroline

[jrsboo]

Well, the report is in.  I am still undetectable at 2 months of 20 mgs of Sprycel!!!!!!!!!!!!  Woo Hoo!  Not counting any chickens mind you, but am enjoying the omelette!

[LoriC14]

That is fabulous news - good to hear... Congratulations Carolyn!

[LoriC14]

Thanks for the feedback Caroline... Looking into at least a 2nd opinion now in Boston or NYC.  And thanks for the blog tip