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Lymphoma and CML. Anybody know anything?


CML diagnosed December 2018. 303,000 wbc. Imaginable resistant. On Dasatinib 80 mg.  Slow responder. December bcr abl 5% int scale.  CBC normal, platelets 130.  Very fatigued.

8 days ago trouble focusing eyes while doing taxes. Then seeing double . Itching of left eye and swelling beneath lower lid. Swelling now over an inch across. Socket painful. Today  Opthamologist and opth surgeon suspect Lymphoma.  Plan biopsy for next week!

I feel like the Plagues of Egypt are upon me.  Anybody experience anything like this double trouble?  Scared.  Gitel  in USA, Minnesota.



That terrible to hear - even if it turns out to be nothing, it will be a lot of stress for you.

I can't offer any practical help for you, but of course leukaemia can cause eye problems too - however usually prior to diagnosis.

I really really hope this ends up nothing more than a nasty scare for you. Please do keep us up to date.


Hoping for your trouble to be something easily taken care of.  Keep us informed.


Dear Friends.  I have spent the last week in hospitals, first in Minneapolis, then Mayo Clinic in Minnesota.  The do not know if the growth under the left eye and in the orbital area is from an infection or from Lymphoma.  Antibiotics in first hospital had no effect. All sorts of imaging and then biopsy at Mayo Clinic.  Current information is that CML is not involved. This, so far is separate.  

Pathology will be finished they think by Thursday to see if it is Lymphoma , infection, or something else.  My oncologist and a Lymphoma specialist are on the medical team. I am fortunate in the excellence of Mayo Clinic and that traditional Medicare and my supplemental gap insurance with Blue Cross Blue Shield will probably cover everything.  Dasatinib is still $15,000 a year out of pocket, Medicare picks up the other $130,000.  Crazy health system in the USA.

I really do not want Lymphoma...with all that follows.  Thanks  for caring. I’ll let you know what they find.  Gitel


Thank you for the update. I second other comments and hope it is nothing. Try not to think about worst case scenarios but wait and see. Mayo is world class place to be. Hoping for a good result and keep us posted.

Hi Gitel,

I so hope all is clear for you on the lymphona front and that this is something minor. So sorry to read about it but it sounds as if you are in good hands with your medical care. Keep in touch

In my thoughts,



Gitel - All my fingers and toes are crossed for you.


Thinking of you, and really really hope this turns out to be something mundane, easy to treat and just an awful scare.


Hearing from all of you lifts my spirits. Thank you. Gitel

hurrah   It is NOT lymphoma.  It is not an infection.  Not related to CML.  Many lab tests

many pathologists. It is idiopathic, some kind of granuloma.  

They will try a prednisone injection next week.  I am Relieved. But here I am, again a unicorn.  They did a BCR ABL. I dropped from 8% to 5% in the last 3 months.  Turtle   

I Thank all of you for support.






That is fab news. I can only imagine how scary it must have been, but super to hear that it did turn out to be something more mundane. Hopefully the prednisone will do the trick.


So very pleased to hear your news. What a relief ! Enjoy your weekend,



Thank God! Very happy to hear the good news.  I'm sure like me, many people have had you on their minds and it is great news that you can move forward and find the right treatment/steroid to get rid of that once and for all.  Have a great weekend.

Hurray!  Hurray! Hurray!  I know what you mean about unicorn-ness.  My bazillion year old MIL has disasters, but they all get diagnosed and - amazingly - FIXED.  And she just goes on as before.  Detached retina, colon cancer, pneumonia, sciatica, some weird contracture of a finger - all of these, they ID the cause, give her a treatment, voila - she's cured and it never comes back.  Me?  I get the unicorn shrug - "we don't know why or what - try this" and nothing works, it never goes away, and I just add it in.  Except Sprycel, of course!  That works, so, yay.  At any rate, SOOOOO glad this monkey is off your back.  You really aren't such a terrible turtle, either - you're below 10% and heading for the next milestone.  I think you'll see the other side of the decimal point at about a year.  I didn't hit MMR until 22 months and now I'm 0.006 (coming up on 10 years).

SWEET !!!  Great news G.  Very happy for you




















Very happy for you that it is not lymphoma!! What a relief you must feel. I wish you the best!