10 replies to this topic

[pammartin]

I continue to be unique or a weirdo with the CML. As of March 6, I have been off TKI for 2 years and my PCR test from West Penn is still undetectable.

The interesting piece to this puzzle is for the first time my vitamin D is low. I have never had an issue with Vitamin D before. My potassium bottoms out every few months but a trip to the ER fixes me up till the next drop.

When I began the diagnosis of CML in 2011, I was scheduled to see a neurologist because the doctors were looking for MS. I had some of the symptoms and two brain scans that showed some lesions and white matter. The neurologist was annoyed the MS testing was dropped when the CML was found. Now she has ordered another MRI and a series of labs and will see me after I have the MRI next week. I am having a few laughs because the oldest reports say abnormal brain scan. I told my husband I have known that for years and at least they found something between my ears.

I do not remember CML and MS testing being similar in any way, and the Philadelphia chromosome was found in the BMB with aspiration, so the CML was a valid diagnosis. This latest issue is being investigated because I have significant sight loss in the upper right quadrant for my perephial vision in my right eye. I have failed two vision field tests in the last six weeks. MS, cyst, or tumor could be pushing on my eye from the inside. Hence the MRI. The nerves look healthy so glaucoma has been ruled out.

I cannot help but be curious as to where this is going, the chances of me having 3 rare diseases is remote. The CML monster sleeps, the PH monster is ever present, but controlled to manageable with the meds. What's next? I am horrible at gambling, not even going to throw the dice on this one.

Interesting stuff.

[kat73]

Is your middle name, by any chance, JOB?  Seriously, you have been dealt way more than your fair burden.  I understand well that horrible "what next" feeling.  In fact, this is one of the key components to the ongoing problem of how to feel grateful for the life I have.  I can never recover that carefree, unspoken confidence in the future I had - in any future - so that the very question doesn't even arise. Instead, it's always with me, always there when I wake up, and it's still there when I close my eyes at night.  "What next."  There's truly something to be said for the unexamined life! I wish I were a dog or a plant.  Medically, with all these super serious things like CML, MS, and PH we are at a point where we can and do find out in great detail all about the train coming down our track.  But we can't turn the train around.  Best we can do is slow it down or try to scrabble out of its way holding our most necessary parts close in for minimum damage.  I feel childish sometimes because all I personally want - and what I'm secretly holding out for - is for the nasty train not to ever, ever come down my track at all.  Like you, I've got several items just as serious as CML hanging over me - for now, things are pretty good, but they're still looming on my track.  I'm waiting right now on a test result, as a matter of fact - my life is a series of scares and accomodations.  I keep trying hard to feel gratitude for what I have.  But I find it hard not to let the wheedling deal-making in to that equation:  If I could just keep things going like they are now, I think I could cope and feel grateful - just please, please, please don't send me anything else!  What next, indeed.

[thatguy]

I wish you all the best, and am so sorry to hear of what you have dealt with..I can't imagine.

[Dona_B]

So sorry to hear, Pam. Praying it's nothing. Two is quite enough.

 

Kat,

Your analogy reminds me of what a coworker once said about the light at the end of the tunnel....it's just the train/another train. As he probably was a leader in a forced resignation/firing, he was right. Thankfully it turned out to be a blessing in disguise as it was the catalyst to get my family and I where we needed to be. I learned a lot from him and I hope he learned a thing or two as well.  

[pammartin]

Without sounding unconcerned or not meaning too, I feel pretty lucky. The CML started off poor but turned around quickly after a few months. The PH is controlled and I am unsure if my shortness of breath when climbing the stairs is all the PH or the widening of my arse from an extra 25 lbs.

The MRI (even the abnormal ones) puts to rest a question my mother dwelled on for years. There really is something between my ears. I am not unsure before becoming concerned about the word 'abnormal' she very well might have first muttered, 'I have known that for years'. Somewhere, I am almost positive she had one heck of a laugh.

[VickiW]

All I can say is wow.   What I can add tho is I had a PA (Physician's assistant) kind of freak when she saw a tremor in my right hand.  After hearing me tell her how it comes and goes, etc. she ordered a cat scan (or MRI not sure which).  I asked her what were the chances it was just the progression of my neuropathy, she just said no.  Results were negative.  My Onc lowered my Sprycel dose and  now the tremor (and the feeling like I just downed an entire pot of espresso) pops up only occasionally.  

[pammartin]

Glad your tremor is only occasional.  I like to know what is going on, I do much better with information and facts.  The unknown drives me nuts.  You mentioned neuropathy, and the reduction in the tremors after the Sprycel dose was reduced.  Did they give you an idea of why the Sprycel may be causing the tremors and how did they rule out the neuropathy? 

 

I get those feelings of drinking a pot of espresso also.  They annoy me because I am not permitted to have caffeine.  I thought for a while it was the PH and the right side of the heart pushing blood to the left side of the heart.  What is odd is my heart rate is high all of the time, even sitting still but this is different.  I have mentioned it a few times but no one seems to take much notice.  I thought for a while it was a panic attack but I don't have any other symptoms.  Although I dislike the feeling I would like it to occur while I am at one of my doctor's offices for an appointment.  Perhaps if they actually checked me during the episode they could look for answers.

[VickiW]

You are a lot like me. I can handle just about anything but not knowing.  Told my onc once  "I can fight any devil if I know it's name".  They didn't rule out the neuropathy, just the opposite.  It wasn't something horrible (like MS or?) like the PA thought, it was just the neuropathy like I tried to tell her.  (I have it in several forms.  Motor, sensory, etc.)  What folks don't realize is one of the side effects of CML is peripheral neuropathy (that was one of the things that told me something wasn't right before I was dxd) and one of the potential side effects of Sprycel is peripheral neuropathy.  Now the Sprycel has caused me to develop T2 diabetes which also causes peripheral neuropathy, BINGO!  I hit the trifecta.  When my onc reduced my Sprycel the last time to the minimum dose, it took some time but I regained my balance, the pain in my feet went away and regained a lot of the sensation I had lost in my hands and feet.  The tremors are most likely the motor neuropathy (haven't bothered with the specific testing, all that would do was verify what my whole med team already is certain of so why waste the expense) .  I still have to do a crazy balancing act between not getting enough exercise (then the legs start burning on my thighs and the pins and needles, shakes, etc. come back) to too much exercise or just general activity like gardening too long then I really get weak and shaky but now days that could be the neuropathy, low blood sugar, (from the T2) or both and if I'm walking too much then the feet decide to get into the act too.  Anyway, you get the picture.  I know what it is and it's nothing I can't live with and I've learned to adjust my life to my "new normal" but I'll tell you, it was like getting a reprieve from a warden when my Onc dropped my Sprycel!!!

 

I hope they find some positive answers for you too!  In the meantime, you might consider doing some research of your own about peripheral neuropathy.  In the beginning I had to dig and find my own answers  even tho I've been blessed with a great onc.  I was lacking the other piece of the puzzle back then, a good internist.  Also, back then no one knew all the potential side effects and complications of these new "wonder drugs".  They we just focused on keeping us alive and had little idea we would actually be living!!!

[pammartin]

Thanks for the info. I am very familiar with neuropathy, both my mother and brother suffered from it. I don't believe I have ever heard of peripheral neuropathy. That is my quest for the day, research. Although, my first quest is to try not to take a nap two hours after I get up every day.

I have been off Sprycel for two years as of March 2014, I try to shy away from blaming everything on the TKI but I am concerned about the long term effects on the body.

14 years ago my friend was diagnosed with lymphoma. After lenghly treatments and a very long year she was finally cancer free. Last summer she was diagnosed with skin cancer, three surgeries could not remove the cancer so she had to do a month of radiation. Her oncologist states the skin cancer is directly related to her chemo and radiation while battling her original cancer.

That opened my eyes even wider to the idea these treatments are life saving but have their own issues. Research. Research. Research. Immediately after my nap.

[VickiW]

Just an FYI

Neuropathy.org has all the definitions.  Peripheral neuropathy is the official name for the form that only effects the nerves in the hands, arms, feet and legs (thus the peripheral).  It's the most common form as opposed to the form(s) that effect the spine, organs, etc. or effects the ability to get the muscles to work. (motor) but you probably already know all of this stuff.  The biggy for me (other than the peripheral) is the nerve bundle that leaves the spine at the base of the neck and runs up the left side of my neck.  Effects the entire left side of my head.  Boy do I know when I forget my gabapentin!

 

I'm not blaming things on the Sprycel.  Something pops up, I  do the research (I start with the reeaallyy long, tiny print, sheet that comes in the Sprycel box that is only supposed to be seen by the physicians) and, at least in my case, it's usually "oh crud it's the Sprycel again" moment.  The newest one, the T2, was stunner for me because there was no reason (I was at zero risk) for me to develop but then I made the connection between the damage that Sprycel does to the pancreas of those on it long term and had the lightbulb moment.  Went to my onc about it and he said, "yep, this is beginning to show up".  Oh goody.  Once again I am ahead of the crowd with the "new stuff".

[Buzzm1]

Just an FYI

Neuropathy.org has all the definitions.  Peripheral neuropathy is the official name for the form that only effects the nerves in the hands, arms, feet and legs (thus the peripheral).  It's the most common form as opposed to the form(s) that effect the spine, organs, etc. or effects the ability to get the muscles to work. (motor) but you probably already know all of this stuff.  The biggy for me (other than the peripheral) is the nerve bundle that leaves the spine at the base of the neck and runs up the left side of my neck.  Effects the entire left side of my head.  Boy do I know when I forget my gabapentin!

 

I'm not blaming things on the Sprycel.  Something pops up, I  do the research (I start with the reeaallyy long, tiny print, sheet that comes in the Sprycel box that is only supposed to be seen by the physicians) and, at least in my case, it's usually "oh crud it's the Sprycel again" moment.  The newest one, the T2, was stunner for me because there was no reason (I was at zero risk) for me to develop but then I made the connection between the damage that Sprycel does to the pancreas of those on it long term and had the lightbulb moment.  Went to my onc about it and he said, "yep, this is beginning to show up".  Oh goody.  Once again I am ahead of the crowd with the "new stuff".

 

I have considerable damage C-4 through T-1; coupled with Gleevec it has presented a real challenge; it was bad enough before.  My kidney function has been negatively effected and at my last annual physical in October my primary physician prescribed all the necessary paraphernalia for me to check my blood sugar every day after a fasting glucose reading of 128 although I haven't started using it yet.  Maybe after I get off the Gleevec.