Lymphoma and CML. Anybody know anything?

Gitel, 

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.

David.

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

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,

Best

Chrissie

Gitel,

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

David.

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.

Gitel

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

Best

Chrissiexx

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

steff