23 replies to this topic

[Judy2]

Hi Billie,

You might talk to your doctor about running an amylase test. A lot of people know that a high amalyse can indicate pancreatic trouble but a high amalyse can also indicate inflammation in the salivary glands. I'm not sure how they determine which one it is coming from, your doctor will know. I had a high amalyse in 2010, it was coming from my salivary glands. I attribute this to my Wegeners, though. I'm not sure if this will tell you anything but it is a simple blood test. Anyway, you better get home fast, what with the sharks, stingrays, alligators, red ants and morticians it does seem you are in DANGER!!! Hurry home.

Judy

[Susan61]

Hi Billie:  I cannot believe the things that happen to you.  I have weird things happening to me all the time, and my family  just laughs at me.  I never heard of a hole in your cheek.  Do you mean an actual hole on the inside of your mouth?  Maybe you need a specialist for this.  Your sense of humor always gets you through everything, and you always seem to give mea good laugh when I need it the most.  It does sound like the saliva gland like the one doctor suggested.  I hope you can get it taken care of soon.

Susan

[Susan61]

Billie:  Check out Parotitis which is a inflammation of the Salivary Gland.  You would then need a Head and Neck doctor to evaluate it for you. Just a thought that might help.  Do you have a tendency to chew on the inside of your mouth.  Sometimes people have that problem when they get uptight.  I know some people who do that.

[NotJack?]

Can't help you out with the holy cheek, but I would keep a watchful eye on that sister-in-law!

[pammartin]

Hey Billie!

I was going to ask how you are, but then I read your msg.  I am homebound, darn chest something, compliments of my son, go figure.  So you are hiding from stingrays, alligators, sharks, and while you were sleeping, someone drilled a hole in your cheek!  Geez, I am thinking you guys need to head home.  I have been watching the temps down there, it hasn't been all that pleasant, of course if you look at our 12 degrees over the weekend 50's for high and 30s for low looks pretty darn good!  I know nothing about your cheek situation, but I know ever time I look for information on the Internet I have way too many horrid options to choose from.  The dentist is not a great option either, I have the same reactions to both dentists and snakes, I pee and run.  (Well maybe not always in that order).  Keep us posted with what you find out, sorry you are not feeling well, was hoping your few month trip would be a relaxing event for you.  I owe you an email I think, feel better, ok?

Pam

[hannibellemo]

So, Billie, are you saying this salivary gland is exposed? You truly have the most interesting side effects, hands down, of anyone I know! 

Pat

[VickiW]

Hi Billie!

bet you thought I had kicked the bucket, huh?  Just been too busy with life to get on the board much but I have been "lurking".  See you are still writing your own pages in the medical journals   I've been "cruisin'" down the CML road the past few months.  2 big "O"s in a row and find out if I made a 3rd next month!  Went on a whole grain diet in late December and am finally being able to counteract the weight gain from the drugs (mostly neurontin) and actually had to attack some of my jeans with the sewing machine yesterday so I had some pants that didn't seriously threaten to fall down in public!  (NOT a pretty visual )  14 lbs to go and I will be back to my pre dxd weight!!!!  Feeling so good I get a little guilty about it at times when I go visit my Onc.  Most of the nerve damage and motor loss has been reversed   (took things into my own hands, literally).  Going to start phasing back the neurontin soon and see what happens.  Takes a week or two before you know if it's ok or you need to go back up on the dosage.  Can't just quit cold turkey or you could go psycho (in my case would anyone notice?).  Tried it once but figured out it wasn't a great idea when I started crying at dog food commercials (scared my poor hubby half to death~he thought I was somehow pregnant!). 

Seriously, did some research and even though I definitely was (and am) dealing with peripheral and motor neuropathy caused by both the CML and the drugs needed to treat it, I discovered that the literal years of being on proton pump inhibitors that I was taking so I could tolerate the Gleevec most likely caused a serious depletion of B12.  While on the Gleevec I had few symptoms (except for the foot thing) and other more mild symptoms I didn't recognize at the time, when I was switched to Sprycel, the neuropathy made a roaring (and very painful) surge within months even though I no longer could take the PPI's.  Anyway, long story short, did some dietary adjustments and now ALL my side effects are either much milder or disappeared completely!  yeah, things still cycle, which is common to the Sprycel, but the "cycles" are shorter and much less pronounced than before!  Ok, sccccrrreeeccchhh, dragging my soapbox away now (hehehe) just thought there might be someone out there that needed to hear what I had discovered.  Don't let the sharks get you  (sharks?  we literally had a grey wolf in our yard the other day ~and supposed to snow later, sigh.)

Sooo, glad to hear you are still making sure the researchers are kept busy!

hugs and prayers,  Vicki

[Susan61]

Hi Billie:  I am just getting around to answering your message.  I feel like you do with no more testing.  I always  have some new problem to deal with like you.  I was just getting all my paperwork together for taxes, and 2011 was a horrible year for medical expenses, and all the damn prescriptions for my husband and myself.

     If your drooling does not bother you, and its nothing serious I probably would do the same thing as you.

     I have always been one of those people since I was a child with all these odd ailments.  My mother always asked me why I have to do everything the hard way, and now my  husband says the same thing.

    As long as it does not turn into anything more, then I hope you can live with this problem.

Susan

[Susan61]

Hi Vicki:  I must have missed a lot of your postings, and I find it interesting as to all you have said.  I have been low on B12 for years, but never take any.  I am just so sick of pills.  My Gleevec did make me go on Nexium, which I have also been on for years along with the Gleevec.  I am constantly having those foot cramps and my hands cramp up.  It happens more often now then it did before.  I just live with it.  What kind of trouble did you have with your feet.

Everything just cramps and curls up on me.

     What does your Whole Grain diet consist of on a daily basis? 

Susan

[VickiW]

the lack of B-12 can cause some serious nerve issues (among other things) that can closely mimic that of peripheral neuropathy.  What happens is the PPI's block your ability to absorb B-12 and a B-12 deficiency, long term, can cause some real problems of it's own.  I was on prescription protonix the entire time I was on Gleevec as well as a prescription antihystamine as I had an alergic reaction to the drug (among other things) but it was the only drug they could give me at the time.  I could have used the protonix the first year on Sprycel because my stomach was still such a mess but you can't take a PPI with the 2nd generation drugs.

My foot issues were initially some pretty severe pain whenever I tried to walk too far, especially on concrete, like grocery shopping, which I was often forced to cut short because of the pain.  Just thought it was part of the whole Gleevec thing (since they were forced to keep upping my dosage as the drug began to fail for me) so I never mentioned it to my Onc.  Months later I was switched to Sprycel and started developing numbness in my feet. Then came the nasty searing pins and needles in arms and legs, burning pain at night on the front of my thighs and loss of mobility, strength and control in my right arm.  That's when it became clear to my Onc that I had developed both sensory and motor neuropathy and was put on neurontin and things steadily improved. 

I had the same initial muscle cramping on Gleevec but was able to get that under control by taking magnesium. (I used to talk on here about standing in line at Walmart looking like I was doing the dance from Michael Jackson's Thriller video~then when my face would flush at the same time I would frighten small children!!!) You can also drink tonic water but I personally don't care for it.  It takes a few days, but the magnesium really does help.   Hope this helps.  You can also try doing a search.  I am sure there is lots of information on this in the old threads however I think a lot of my stuff (as well as others) may be lost because it was on the old board.  I am coming up on my 5th anniversary of this journey next month and have been on this board since only a couple of weeks in.  There are amazing and very knowledgeable people on this board who know far more than I but we are all willing to do what we can to help one another.

[VickiW]

OOPS!  missed the diet question~here goes   basically I just removed everything from my diet that was white.  White bread, white flour, white rice and replaced these with whole grains. I also dumped white potatoes for sweet potatoes (I LOVE sweet potato fries!) I just started removing one thing at a time.  The white bread was easy for me because I never really liked doughy white bread anyway.  I love "wraps" and I can't tell the difference between white flour and whole grain tortillas.  I have hot Kashi cereal for breakfast most mornings (occasionally their cold cereal instead) and I have all the protein and energy I need and it's so filling I have no need to snack .   Now I am working on giving processed meats the boot.

My main motivation was that I have had a consistantly above normal blood glucose (pre-diabetic)since switching to Sprycel and just decided it was time to do something about it.  Figured I had enough problems without risking developing diabetes to boot!  Just by adjusting my diet for that, the weight started to come off!  yippee!!!  Sooo, I thought, ok, I'll just do a bit more "tweeking" like  dumping the white sugar and anything with high fructose corn syrup.  I didn't give up my beloved latte, just switched it to a soy latte which is even better!!!  (Billie and I will both have our coffee cups pried out of our cold, dead hands, hehehe )  Anyway, I feel 100% better, have more energy and losing weight?  What girl doesn't love that?  Can't wait til my onc sees me in a few weeks!

[eithne01]

This is well interesting, I've been on glivec for two years and put on two stone.  I started a college course last september and one of the Modules I am doing is nutrition.I have never touched processed meat since my first nutrition class and have steadily gone off a lot of different foods as the course progresses.  The thing is I have lost two and a half stone since then and apparantley am looking "mighty"  Unfortunatley, I still have awful hand and leg/feet cramp. Five minutes walking and I am howling with pain.  Going shopping with my daughter is a nightmare as I am "on the floor" within the hour.I have taken the vitamin c supplements etc, but no joy.  Would appreciate any advice.  I have never had a day cramp free or a full nights sleep since I started Glivec.  The only thing is it works in every other way. Any suggestions?

[VickiW]

there are many suggestions on here about how to deal with muscle cramps.  The one that worked for me (and others) is the supplement, Magnesium which was recommended by my doctor.  You talk of foot cramps.  I am wondering about those.  Do your feet actually cramp up or just begin to hurt really bad where it seems to go up your legs?  I ask because "toe curling" is cramping, the bottoms of your feet REALLY hurting to the point it makes your legs ache, might be something different as it was for me.  I suggest you do some research into Peripheral Neuropathy.    PN is not only a potential side effect from the CML but the Gleevec you are taking can also cause it (look closely at the large sheet that comes in your drug box or check online and you will see it listed in the fine print.  I recommend talking with your Oncologist about this.  Getting on the correct medication to treat the neuropathy gave me my life, and mobility back!  Let us know what you find out, good luck!

[Susan61]

Thanks for all the information Vicki:  I keep blaming a lot of my foot trouble from not buying good shoes.  My problem is the curling of the toes and fingers.  ITs not pain up in the leg etc.  I am on Gleevec for 11 years, and its just been the constant cramping thing.  You sure have been through a lot, but you found ways to beat a lot of your ailments and thats great.  Keep doing what your doing, because it works for you.  I will try some of your tips.

Susan

[eithne01]

Thank you so much for the reply, I can honestly say I never heard of this condition.  I do have the cramps everyday, but it is the

actual pain in my feet and up my legs that are crippling. I am seeing my onc on the fifth of March and will be asking him about this

Hopefully I will get it sorted as I won't come off the Glivec.

Take care and thanks again..

[Happycat]

Billie,

Sorry, I have resisted answering your post, because I keep having this silly desire to ask if your holy cheek might look anything at all like Jesus or the Virgin Mary.  If so, perhaps you can post a pic on the web and have your cheek become an instant shrine. (Couldn't help myself!)

If the drooling thing is really bothersome, I would imagine they can cauterize the gland so it will stop producing saliva. It would probably hurt like the dickens though, so up to you to decide how much being drool-free is worth to you.

Traci