Log in
CLL Support Association
12,084 members18,402 posts

New to CLL

I was just diagnosed with cll in Jan 2018. I was sick with colds most of the fall on antubiotucs x3 and then had a cold in Jan that I couldn't shake turned in to a 5 day hospital stay for bilateral lower lobe pneumonia. During stay spleen 16x24 cms..wbc 85000..plts 60000..several nodes enlarged..transferred to duke for bone marrow biopsy..told I had cll needed some form of treatment now due to spleen enlargement. Chose for therapy. Started yesterday. When I look back my white count had been 12 and 14 15 years prior with mild fatigue and high lymphocyte % for well vists but otherwise had no idea I anything other than sinus/cold now. Almost better to not have had to endure watch and wait bc have traveled over 10 countries..gone on cruises..flown to Texas to see the grandkids (son in airforce) if I had known probably would have stayed home. Also I work in a hospital..germs. I have been thankful to this site for those 2am questions..

13 Replies
oldestnewest

FCR

Reply

A warm welcome to our community where you'll find lots of information and support from everyone.

I hope your FCR goes well and you manage to have the rituximab without any reaction today.

with best wishes

2 likes
Reply

Thank you so much..its been a great resource so far. Forgot to say that I am 55years old mother of 2 grandmother of 2..ob nurse.

Reply

Welcome to the group. I too am an RN and was diagnosed in January. I admire your spirit and am going to adopt a bit of it myself! I am on W&W. I wish for you a smooth course of treatment with excellent results!

1 like
Reply

13Q deletion with mutated ivgh.My dr says good prognostic markers and can start with any therapy

Reply

Thank you for the reply..apparently i had about 14 years before needing treatment..i just didnt know it. Wishing you a long watch and wait

1 like
Reply

Welcome Ircooke....I am also a nurse but now retired. I was diagnosed with CLL in Sept of '07 but my docs think I might have had it for a couple years prior and am still on watch & wait. I recently found out that my spleen is moderately enlarged 11. 9 x 17.3 centimeters. Sometimes there is an aching on the upper left side of my abdomen where I have had a lump/bulge for about a year and other docs ie GI and primary care said it was probably the descending colon. Do you experience any abdominal discomfort? My red cells are holding their own so no treatment unless they start dropping which would indicate the marrow is packed with those rogue B Lymphocytes. Do you know what your markers/mutations are? I'm Trisomy 12 unmutated no 11q or 17p deletion CD38+ and ZAP -70+ all of which are prognostic of an unfavorable outcome but a doctor I talked to via email says they're just numbers and given the indolent nature of my disease don't really mean anything.

Best Regards,

Dianne

Reply

Yes other than having frequent colds and fatigue i noticed a hard lump just beyond my ribcage on the left side just below my sternum. I had indigestion and mild back pain. Occasionally i would have a dull ache in the luq of my abdomen. The hardness gradually spread around my ribcage to just above my left hipbone. Just learned to eat small meals frequently.

Reply

That doctor I talked to is in New York City. I'm in the Tampa, FL area and my hematologist is at H. Lee Moffitt Cancer Center.

Reply

Welcome lrcooke, sounds like you are in states, stay healthy and positive

UK Sparky

Reply

Welcome to the forum Ircooke and I hope your treatment goes well .

Reply

So far going ok.Thanks

Reply

I am also a RN working rehab have a lot of hips and fx. I was concerned at first but we don’t see to many infections. So I think I will be okay for a while. I am on the watch and wait. I am get tired but one foot infront of the other!

Reply

You may also like...