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Mouth and another issue


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#1 ------

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Posted 23 March 2015 - 11:14 AM

Hello everyone,

 

So I have a lump on the back of my tongue at least that is all I can see and it hurts closer to the front it is kind of lumpy and white.  Other issue is I have to pee every 20 min to 1 hour sometimes I actually have to go and some times I really don't but it always feels like it.  No UTI or anything like that.  I do know that my creatinine last week was 1.21 and my gfr was 50.  (I always thing about gsr (gunshot residue) lol  :rolleyes:  :wacko:

 

I am taking Gleevec 400 once a day.

 

I am going to see my onc nurse in the morning she doesn't want me to wait she said I could end up in the hospital! :o

 

I'm not freaking out or anything just wondering if anyone else's had similar experiences.

 

Thanks in advance!

 

God Bless!

 

MDJ



#2 Busa

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Posted 23 March 2015 - 03:49 PM

Best wishes, I hope it something very minor.



#3 Trey

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Posted 23 March 2015 - 06:02 PM

Mouth sores are a recurring problem for some.  Here is some information:

 

http://community.lls...res#entry163840



#4 Billie Murawski

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Posted 23 March 2015 - 09:46 PM

Hi MDJ,  I get mouth sores it's very common with tkis especially gleevac I think. My onc gave me a script for bmx solution to use when I needed it. I think you don't need a script for it anymore just ask your pharmacist and he'll mix it up for you.

 I had a problem with utis when I was on Gleevac they just about stopped since I went on sprycel. I take a water pill so I'm always running to the br.  My mother used to always say she couldn't pass a bathroom or a mac machine without using it!

 

PS The bmx solution is for the mouth in case I confused you, Kitty and dede gave me brain fog. :huh:



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Posted 24 March 2015 - 07:46 AM

Thanks Busa!

 

Thanks Billie and Trey.

 

I just came from the Nurse she said that it is an ulcer and that salt water swishes should take care of it in a couple of weeks.  She sent urine off for testing.

 

MDJ



#6 jmoorhou

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Posted 27 March 2015 - 11:42 PM

I was having really frequent urination.  I went to a Urologist yesterday and he said I am "spoiling" my bladder, and to wait five minutes and then 10 mins to pee.

 

It is really working.  I sit down when I get the urge and I'm down to about six times a day when is was once every half hour three days ago.


Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis

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Posted 28 March 2015 - 10:55 AM

Thanks jmoorhou. My lave test was fine I was told perhaps I need to see a urologist. I started trying what you just said last week because I'd wasted trips. I will do it more to see if it helps.

Thanks again!

MDJ

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Posted 06 April 2015 - 07:17 PM

Saw my onc today.  I he wants me to see a specialist for my tongue.  :o



#9 pammartin

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Posted 06 April 2015 - 07:38 PM

I had/have reoccurring trouble with mouth ulcers.  My doctor told me they were a virus and not from citrus, although I seem to get them or more of them when I over do it on the fruit.  My dentist told me to take Lysine, an OTC supplement for healthy skin.  He said to take up to 4 a day which is 6 hours apart.

 

This was many years ago, my oncologist did not tell me not to take them, but he didn't tell me I could either.  Pittsburgh and Cleveland didn't have a problem with me taking them but they wanted me to limit it to 2 a day till the ulcers healed. 

 

Because you are headed for specialist I would wait if you wanted to try this method, and I would ask my oncologist but if they agree it is easy, cheap, and seems to work well.  I have passed on this info to several people who are not ill, all have noted their ulcers healed quicker and were less painful after one day on the Lysine.

 

Good luck to you. 



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Posted 06 April 2015 - 07:41 PM

Thanks pammartin I am familiar with Lysine and will ask about using it.



#11 Tedsey

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Posted 06 April 2015 - 09:49 PM

Did you have a previous history of mouth sores?



#12 Tedsey

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Posted 06 April 2015 - 09:50 PM

Sorry!  That was totally redundant!  Did you get sores before CML?



#13 ------

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Posted 06 April 2015 - 10:25 PM

LOL no not at all.   :wacko:



#14 Billie Murawski

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Posted 06 April 2015 - 10:27 PM

Pam I remember lysine  It works great for cold sores too. I forgot all about that.

MDJ I can't think of a reason why you couldn't take it, check with onc first though.



#15 Billie Murawski

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Posted 06 April 2015 - 10:40 PM

Sorry!  That was totally redundant!  Did you get sores before CML?

Hi Tedsey, How are you doing, did the easter bunny come see your babies? They'll always be our babies :wub:

We gotta get everybody back in good health on this board so we can go play in the dirt (if it warms up). Speaking of dirt let's pray that Marnie doesn't break her neck on her new dirt bike or dump bike or whatever she calls it. I'm getting jealous she gets a new toy for her birthday and I got a new furnace, and possibly a new washer.



#16 ------

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Posted 06 April 2015 - 10:56 PM

Ok Billie thanks I will.

#17 Pin

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Posted 07 April 2015 - 12:19 AM

Yes, yes, and yes - I have had both those problems. I went to a urologist and he was going to do some expensive testing, but I decided not to, and it turned out it was just fluid retention deciding that it wanted to be released every now and then - a lot, in one day. I found I could change the frequency depending on what I was eating and how much sodium was in it. Every now and then I take a diuretic now too, which has the same symptoms...but at least I know when it's coming and that seems to keep it quiet for a while.

 

As for the tongue thing, let me know what your doctor finds out - I have what sounds like a very similar thing. Every few weeks or so, I get a very sore tongue in the same spot in the middle towards the back. Usually I have to trim it, or pick bits off with some tweezers (too much information, I know!) because it hurts and I tend to try and scrape it off with my teeth. I figured it has something to do with cell growth now being slower, or it might be something called lichen planus? Which I think can come from lowered immunity.


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#18 gerry

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Posted 07 April 2015 - 02:02 AM

Pin - you're braver than me, just thinking about what you're having to do is making me wince.



#19 Pin

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Posted 07 April 2015 - 02:59 AM

I know, super gross hey :(

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#20 ------

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Posted 07 April 2015 - 01:55 PM

This is not like any sore I have ever had.  It really doesn't hurt and it doesn't come and go it has just been there.  The area around it was irritated but that cleared up for the most part.  I can barely even see the lump as it is so far back on my tongue but sometimes it feels like I a swallowing something but I can tell that I am not.  I have an appointment with the specialist for next Tuesday.  






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