Re: CLL in tissue .. where is yours?

[Guest guest]

A few years ago I told my (CLL specialist) doctor that I

understood CLL could be 3 places: peripheral blood, lymph

nodes, & bone marrow. I asked him where mine was. Not

surprisingly, he said " all three. " My 'maintenance' Revlimid

is keeping my nodes hidden, my blood counts normal, and is

(as I understand it) normalizing the bone marrow. It's the

bone marrow where my understanding is the foggiest --

perhaps total darkness, ha!

Ozark wayne

[Guest guest]

Secondary infiltration is rare but it does occur in CLL.

Mine is in my kidneys and should respond to CLL treatment.

(Glomerulonephritis (GN))

http://www.biomedcentral.com/content/pdf/1471-2369-12-33.pdf

Other places are the liver, colon, prostate, lungs, stomach,

eyes, spinal column, skin, breast, mouth.

There are a number of site specific studies in the research

on this topic.

~chris

[Guest guest]

And thanks to all who are replying. I was interested in

those now participating on the forums and how frequently

this infiltration actually occurred.

Lynn

[Guest guest]

Hi Lynn,

My SLL/CLL has gone for the throat. My tonsils, adenoids

and an extended area of tissue down to the voice box is

affected. I also feel that my sinuses have been affected

too because I have constant symptoms of sinusitis and

monster sinus headaches occasionally. My head always feels

cloudy which is probably my worst symptom as I have always

loved to have clear, uplifting thoughts. My presentation is

very rare. My nodes are unremarkable to this date. My hope

is that when it because time to do chemotherapy, these

symptoms will ease.

Good Luck to you.

Peggy

[Guest guest]

How is it discovered that CLL may be located in solid

tissue: incidental findings, directed search (examination),

or noticeable " lumps and bumps " ?

What would be the cellular morphological differences between

CLL cells which have invaded tissue or (for example)

squamous cells or other cells which have invaded " host

tissue " ?

O

[Guest guest]

Hi Peggy and Group

I was diagnosed with CLL in April. I am 30 yrs old with 13q

del, -cd38 and -zap70. My blood counts are pretty normal

except wbc are slightly elevated 20k. I do have some lymph

node involvement in my neck. I have no symptoms and feel

fine except for my throat. I have had a sore throat since

July. I have seen my PCP several times was given antibiotics

though two cultures came back negative. My throat is red and

sore but they can't seem to tell me why. The same pain has

now spread to my tongue and floor of my mouth. Those areas

look normal. I was wondering how you found out that your CLL

had infiltrated your throat and surrounding areas? My

hem/onc suggested seeing an ENT which I will probably do,

but I am tired of going to the Dr and never getting an

answer. Just sort of learning to live with it.

Thanks,

[Guest guest]

,

In my case, I had a breast mass excised which then had FLOW

analysis done as it was biopsied. (I assume, based on the

way the results read.) The path lab knew I had CLL so

probably knew what to test for in addition to other types of

cancerous cells. My results read " Small lymphocytes are

increased in number within the surrounding tissues, seen as

patchy infiltrate. The Lymphocytes are CD20 positive, show

aberrant co-expression of CD5 and are negative for cyclin

D-1. A CD3 stain highlights rare T-cells. The findings

confirm the presence of CLL in the patient's tissues. "

My breast surgeon told me she had seen CLL in biopsies of

the breast tissue of other CLL-ers with cysts or cancerous

growths. Forgot to ask her if this was the usual case for

CLL-ers. It may not be -- I had this cyst coming and going

for over 10 years, so it had plenty of time to acquire my

CLL, sigh, although I've only been dx'ed for 4 years.

For others' experiences: .. that's why I posted this

question, to find out what, where and how their CLL in

tissue was determined.

Lynn

[Guest guest]

In regard to " where is yours " , I thought I had researched

--- still have so much to learn.

Am I understanding correctly. Are yall telling me that

cancerous lymphocytes can " settle in " tissue and organs

other than blood, lymph nodes, liver and spleen?

YuVonna

[Guest guest]

Hi All,

I, too, was recently diagnosed with Stage 2 CLL and am on

Watch and Wait. In addition to the BMB I had a Cat scan of

lungs, abdomen, pelvis, neck and these were the findings. My

doctor said I have lymph cells, which I guess means CLL

cells, in my lower back, hip, neck and shoulders. They are

very small and are not causing symptoms.

" Small paratracheaJ and subcarinaJ nodes largest measuring 6

mm. Evaluation of the hila limited without IV contrast

Multiple bilateral axillary nodes largest measuring 1 cm.

Multiple small mesenteric nodes largest measuring 1.4cm.

Multiple retroperitoneal nodes largest measuring 1.8 cm.

Internafand external iliac nodes l§[gest measure 1.5 cm. 2.1

cm confluent right common femoral 'ii " ode. Bilateral groin

nodes largest measuring 1.3 cm.

Impression: Thoracic and abdominal adenopathy consistent

with lymphoma " Waiting to see a CLL specialist for a better

interpretation. Not sure what to expect, will these nodes

get bigger, cause trouble, etc. So far I am symptom free

except for a constant sinus infection.

Best wishes to all.

Q

[Guest guest]

Hi - I found that learning about CLL and becoming an

informed patient was the best approach for me when I was

newly diagnosed. Here are some of the best resources that I

found.

* Go to http://www.cllinfogroup.org and download an entire

booklet called " UNDERSTANDING CLL/SLL "

http://tinyurl.com/3l9kevf

This explains much of the CLL basics. You can read it

online, download it or order it (90 plus pages). This

excellent resource is co-sponsered by the CLL Information

Group (CIG) which also is responsible for this wonderful

discussion site tour on now. Thank you for

these invaluable CIG efforts.

1) Other resources for CLL basics (and the latest CLL info)

are

http://www.clltopics.org and

http://cllcanada.ca/2010/index.htm

2) Since you have issues with your CLL - find a CLL expert

(specialist) doc that will work with you, your local PCP &

your local hematologist/oncologist. Local doctors generally

do not have the same level of CLL expertise as a CLL

specialist. CLL is relatively rare so the local community

hematologist/oncologist just does not see enough CLL

patients to be up to date on all the latest CLL

medical/scientific findings.

See the following online resources to help find a CLL expert

doctor close to where you live. See a CLL specialist asap

http://www.cll.acor.org/DRdoctors

http://www.cllfoundation.org/drdirectory

3) find a local hematologist/oncologist (H/O) willing to

work with your CLL expert doc - your primary care physician

(PCP) can probably help with this

4) have you had the following blood tests - FISH analysis,

Flow Cytometry, IvGH analysis, ZAP-70. Have these blood

tests done (I had to virtually force a local H/O to order

these tests -when done they confirmed I had CLL. Then I

quickly found a CLL specialist and a NEW local hem/onc). Get

copies of all the tests and go to

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm to

learn what these tests mean.

5) organize your team with 1, 2, 3 above - then be pro-

active and take good care of yourself

Here's more resource info -

CLL Topics is at

http://www.clltopics.org/PI/PrognosisatDiagnosis.htm and the

article updates are at http://updates.clltopics.org/ Note:

if you register for the updates@ clltopics.org you can then

read and post to the comments section that's after each new

article. Again, it's a lot of interesting information. Some

of the notable posters here are Dr. Hamblin, from CLL

Canada, and a few doctors (general practice) who themselves

have CLL.

Dwyer started the excellent

http://cllcanada.ca/2010/index.htm -again more

scientifically / medically oriented. is one of the

best researchers and nicest people I have encountered on the

lists. This is not a discussion group - it's a source of up

to date information about all things related to CLL. Chris

is also is very active on this discussion group

your now on.

I was Dx with CLL 2 years ago. For me being a pro-active

type A person - learning all I could about CLL helped me to

understand, accept and deal with my situation. Knowing what

to watch out for and how to take care of my CLL put my CLL

in perspective. I'm in watch & wait (w/w) mode but with CLL

one needs to be diligent and have frequent blood testing to

monitor the disease. I see my local hem/onc every 2 months

and my CLL specialist @ UCSD every 3-6 months depending on

how I'm doing.

It really helps me to make every possible effort to stay

mentally, emotionally & spiritually fit. Enjoy life, spend

time with family and loved ones. And good friends are

priceless.

Warm regards - Patti

[Guest guest]

Hi ,

I was diagnosed in Jan 2011 by my ENT. I had a sore throat

prior to my dx for about 1 1/2 yrs. My PCP did a culture

that was negative. He prescribed Flonase and allergy

medication which did not work. He ran a lot of allergy

tests that were all negative. Unfortunately, he never ran a

CBC with differential in that time. In December, I noticed

that my tonsils were swollen especially on the left side so

I made an appointment for an ENT. Best thing I ever did!

He took one look at my throat and saw little growths on the

back of my tongue. He took a biopsy and the local

pathologist sent it to Stanford. Stanford diagnosed my

SLL/CLL. Since my diagnosis, I have been back and forth

between my local onc to a CLL expert at Stanford. I have

tried radiation to get rid of the swelling but that did not

work as well as they thought. I also still see my ENT

because he really physically looks down my throat and

assesses my airway. I am unmutated, CD38-, Zap 70+, with a

weird translocation of chromosome 10 and 14 (no deletion).

, do go to an ENT. Even though my ENT doesn't know

much about CLL, he can assess what a normal throat looks

like and what an adequate airway is. You may just have an

allergy to something seasonal...but have it checked out.

Good Luck and email me if you have any questions.

Take care all,

Peggy

[Guest guest]

- Consider having your sinuses cultured. I went for a

year on various antibiotics with my sinuses infected and

blocked. I finally had sinus surgery. I wish I had known

then what I know now. I should have had the sinuses cultured

for both bacterial and fungal infection.

Pat

[Guest guest]

Q .. looks like your report is saying that your CLL is

in your nodes, where it normally would reside. (And from

the report it appears they are quite small, too.)

My post was asking if, for others, their CLL had also been

found in other tissue, as mine had. From the answers I've

seen, some others have had biopsies of other areas that

showed CLL cell infiltration. Some of the places reported

include colon polyps, skin patches, even the central nervous

system in the spinal fluid. When I asked my oncologist, he

responded " the cll cells infiltrate through the whole body

at places where blood flows " . Unless a problem arises, I

imagine we won't know just where our CLL has settled in.

Again, my post was interested in getting an idea of how many

people had experienced something like I did when my breast

cyst biopsy indicated a lining of CLL cells.

Lynn

[Guest guest]

I agree with Peggy, . Go see an ENT. Tom's ENT is

the one who dx his CLL. Tom was having sinus trouble and

his neck had grown almost 3 shirt neck sizes. His ENT

stated that his lymph glands were enlarged and put him on a

10 day antibiotic round. When the glands did not disappear

on the 11th day of antibiotics regime, his ENT scheduled him

for surgery to take the largest lymph node out and biopsy.

The biopsy came back as SLL.

JLOU

[Guest guest]

I just want to thank everyone for their input. I will make

an appointment with an ENT. My Onc gave me a referral to one

of his colleagues.

[Guest guest]

Hi Pat,

My ENT ordered a cat scan of my sinuses. The scan indicated

massive sinus infection and I took an antibiotic for 10 days

which helped a little. Sinus surgery was mentioned as a

possibility if the infection persisted. It is something I am

considering as winter approaches.

Thanks for the information. Was there a long recovery after

the surgery?

Best wishes to all.

Q

[Guest guest]

I've seem several comments in this thread from people that

have frequent sinus infection problems, and those folks may

want to consider a possible cause unrelated to CLL.

My wife had years of sinus infections until her

endocrinologist ran tests that confirmed Sprue/Celiac

disease/Gluten intolerance. My layman's interpretation is

that Gluten depresses her immune system allowing frequent

infections. Since we CLL patients have to preserve all the

immune response possible, the sinus sufferers may want to

consider those tests also.

I realize that this falls into the physician's adage, " When

you hear hoofbeats behind you, think horses, not zebras "

but CLL may not be the cause of every one of our symptoms.

[Guest guest]

A few years ago I asked to have a bump on my back looked at

during a skin check. The NP thought it looked like basal

cell carcinoma and did a biopsy, which showed the presence

of lymphoma cells. No one seemed concerned, so I guess

that's not unusual with CLL.

[Guest guest]

- A biopsy, as Peggy had, seems like what you need

if your ENT has cultured your throat for bacterial and

fungal infections and allergy meds aren't helping.

[Guest guest]

Hi ,

I went thru that surgery 2 years ago, they also removed

lymphatic tissue that had grown in my sinuses. After

surgery I felt as if I had a bad head cold for about 2

weeks, slowly getting better so that at the end of the 2

weeks I had no more pain or swelling in my sinuses and I

could breathe well again, no problems since then. Glad I

did it.

Best wishes,

[Guest guest]

Hi ,

Did you have a cat scan before surgery and did it show

lymphatic tissue? I am seeing my ENT tomorrow afternoon and

will be discussing it with him. Thanks for the information>

Something I never thought of.

Best wishes,

Q

wrote:

> I went thru that surgery 2 years ago, they also removed

> lymphatic tissue that had grown in my sinuses. After

> surgery I felt as if I had a bad head cold for about 2

> weeks, slowly getting better so that at the end of the 2

> weeks I had no more pain or swelling in my sinuses and I

> could breathe well again, no problems since then. Glad I

> did it.

[Guest guest]

Hi , Yes I did have a ct prior and yes it showed

that it was more than the Dr. could see with a scope.

Good luck,

[Guest guest]

Hi ,

Thanks again for the info. My doctor recommended the surgery

again yesterday so if I have frequent infections again this

winter I will go for it. I am seeing Dr. Kanti Rai on Monday

and will get his opinion too.

Best wishes,

wrote:

> Hi , Yes I did have a ct prior and yes it showed

> that it was more than the Dr. could see with a scope.