swollen lymph nodes in my neck. ....very worried
Posted 26 February 2016 - 11:51 AM
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.
Posted 26 February 2016 - 12:19 PM
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.
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.
Posted 27 February 2016 - 04:43 AM
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.
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