Newly diagnosed with CLL. Have a question.

[elm1]

I was diagnose with cll in August. I have the 13d and was told my prognosis is good. I have no symptoms but have noticed a couple of tiny swollen glands. I'm going to the hematologist and am scared to death. Anyone have that?

[Lola69]

Hello Elm!

In truth , I was relieved when they diagnosed me.

Finally a diagnosis to my swollen neck.

Yes I was scared and still am scared 😟 but try not to think about it.

[elm1 in reply to Lola69]

Hi Lola69. Were your glands very swollen and that was your only symptom? Thanks for responding.

[Lola69 in reply to elm1]

You are welcome elm!

My cervical nodes were 8 cm and the abdominal ones were around 2.5 cm but they started treatment as it was affecting my hearing , sinuses and that the 8cm node may eventually block my windpipe.

[elm1 in reply to Lola69]

I hope your treatment is working and you are feeling better. This is all very scary.

[Lola69 in reply to elm1]

Treatment is working very well.

Everything is under control now.

The unknown is always scary but CLL IS usually a very manageable disease.

Are you on watch and wait?

[elm1 in reply to Lola69]

I am. I was diagnosed 3 month ago. It was found on a routine blood test. I have a follow up appointment tomorrow. It just freaked me out that I had a pea sized lymph node in my neck. I just think I found another tiny one on my neck. I think getting a CLL diagnosis with zero symptoms was such a shock that I notice every little thing on my body now. I'm so happy that you're doing well.

[Lola69 in reply to elm1]

Thank -You :)!

to my knowledge a normal size lymph node is the size of a pea.

If it was found on a routine blood testing U may go many many many years on watch and wait.

[elm1 in reply to Lola69]

How was yours found? What exactly is sll?

[elm1 in reply to elm1]

Thanks for your encouragement. I'm 67 so many, many years would put me as ancient!

[Lola69 in reply to elm1]

Small lymphocytic lymphoma (SLL) is a type of non-Hodgkin lymphoma. It is similar to and treated in the same way as chronic lymphocytic leukaemia (CLL). SLL develops when the body makes abnormal B-cells – the lymphoma cells. B-cells are white blood cells that fight infection.

SLL is found mainly in the lymph nodes while CLL IS found mainly in the blood with some node involvement

[elm1 in reply to Lola69]

An elderly friend said she has lymphoma and is taking a pill and feels great. I'm thinking she probably has sll. I'll let you know what my doctor says tomorrow. Take care and thanks so much for your help.

[Lola69 in reply to elm1]

U r welcome Cll/SLL same disease. Treated same way. I’m on imbruvica capsules and feel great too!

Plz let us know how the visit went

[elm1 in reply to Lola69]

I will!

[elm1 in reply to Lola69]

Just left the hematologist. All bloodwork was stable and my lymph node that I was worried about is nothing. Whe Thanks to everyone on this site.

[elm1]

Thanks Scottxxoo. I wasn't thinking I was dying just yet but stressed over what could be lurking. The little swollen glad scared me.

[Lola69 in reply to elm1]

If you have found a pea-sized or bean-sized node, this is normal. Normal lymph nodes are smaller than ½ inch or 12 mm. Don't look for lymph nodes, because you can always find some. They are easy to find in the neck and groin.

[elm1 in reply to Lola69]

You are very reassuring Lola69 and Scott! I'll let you know what the hematologist says when I get home. I plan to go out for drinks with my girlfriends later. Wine ok? Hope so!

[Lola69 in reply to elm1]

Wine is fine but champagne is better.

moderation is key.

[elm1 in reply to Lola69]

I used to drink a glass of wine every night. Now I limit myself to once or twice a week. Bourbon does sound good! I think we all need to get together!!

[MsLockYourPosts Passed Volunteer in reply to elm1]

Bourbon? No! Yuck! Scotch! My cousin and I have battled over this for years. I still haven't brought him over to the right side. All things in moderation, except ice cream.

It sounds like you are an officially boring patient - best kind to be! There is no need to make major changes in your life, though many of us have found that our diagnosis has been a good reason to think about healthier eating and exercise.

[elm1 in reply to MsLockYourPosts]

Hi there!

You are right about dietary changes. I lived on sugar! My cholesterol was 297! I changed my diet and it went down to 211 in two months. One less thing to worry about!!!

[elm1]

I have had all the tests. What is your situation?

[elm1]

What is 13q? I was told I had something with the 13th chromosome. They told me it was all positive. I'm sorry you have such fatigue. I thought the 13th chromosome meant a slow progression. I'm 67. How old are you? Thanks for sharing.

[Cllcanada Top Poster CURE Hero in reply to elm1]

13q deletion is damage on one of the long arms of chromosome 13. It is best marker in CLL, and is slow moving and treatments work well. The time to treatment is often years...

~chris

[elm1 in reply to Cllcanada]

Thanks for the info.

[Cllcanada Top Poster CURE Hero]

Decent...hello to Reneé

[Lola69]

My lymph nodes are normal now and happy birthday Scott!🍾

[Lola69]

Wine is good for the blood and arteries. Whiskey bad for liver.

[closh]

I can definitely report that Scott's observation doesn't apply to all CLL patients