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swollen lymph nodes in my neck. ....very worried

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#1 Frogiegirl


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Posted 26 February 2016 - 11:51 AM

Hi. ......so a week or so ago I noticed swollen lymph nodes under my jaw. I obviously started to worry because I have no other symptoms relating to a cold or anything. I saw my regular doctor and was sent to radiology for a neck ultra sound, which found no tumors just swelling,also the swelling is lateral. had cbc done and everything is normal! I'm so scarred that this is the beginning of something not so great. ....dare I say lymphoid blast crisis. .....am I off my rocker with this thinking? It doesn't make sense cml is well under control but I can't get this out a my mind. ...uhhhg Trey? Scoobs? Anyone? Oh also I Do have a stye in my eye but the swelling showed up before that. ..I thought the stye was maybe from stress?

Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.

#2 Kellyb333


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Posted 26 February 2016 - 12:19 PM

It may be a salivary gland that is swollen. I also had a cat scan, just swelling was found. I went to an ENT and that gland swells at times!

#3 kat73


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Posted 26 February 2016 - 12:36 PM

Frogiegirl - Yes, it could very well be related to the stye.  Bilateral, as you probably know, is a hopeful sign that it's not a Hodgkin's sort of thing.  I know how scary it is - I once had an enlarged gland right under my jaw - they took it seriously and I had a needle biopsy - all was well (and no real explanation, either) - I remember being super, super scared out of my mind.  And this was a couple of decades before I got CML!  I think I would do a double dive down into despair if it happened now.  HOWEVER.  Get your grip.  Lay all your fears out for your doc and ask for some reassurance.  My bet is on the stye.  Just an aside anecdote here:  I once had conjunctivitis (pinkeye) and was given the standard treatment and it wouldn't go away.  I mentioned on the return visit that my toddler currently was being treated for strep; could it be strep in my eye?  Guess what.  When I took antibiotics for strep, the conjunctivitis went promptly and dramatically away.  All I'm sayin' here is that there can be an unlooked-for reason for an immune reaction.  Let us know the denouement, please!

Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.

#4 Trey


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Posted 26 February 2016 - 07:19 PM

CML very rarely has lymph node swelling associated with it.  Could be the eye issue or some other infection. 

#5 Ladycat1961


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Posted 27 February 2016 - 04:43 AM

Hi,I also had the same issue with swollen lymph nodes along my jawline and behind my ears.But it doesn't stop there, I also have swelling and cysts on my scalp. So I am now wondering if one issue is related to the other. It's pretty scary. Unfortunately I won't have any answers until late April when I get to see a dermatologist. Really glad to be a part of this community and greatful for the opportunity to share information,fears and achievements with others who can relate to my situation.

#6 jmoorhou


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Posted 27 February 2016 - 08:54 PM

Hey, Frogger....A few months ago my neck arm and groin lymph nodes were sensitive.  The GP told me the ones in my neck were were blown out....sounded funny so I stopped worrying about it.  Everything but the neck is gone, and that is still only slightly....


Then I remembered I had a flu shot, so it must have been that....you're body does change as you age, it's not always the CML.


I don't think you should be worried. :)

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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