Nubie

[Mother1943]

Hello, I am new to this site. Although I was diagnosed with CLL 20 years ago.

Currently receiving immunoglobulin infusions monthly

[Jm954 Administrator]

Welcome!

20 years is encouraging for the newly diagnosed members here. I hope you’re well

Jackie

[Mother1943 in reply to Jm954]

Thank you. I am well🙂

[gardening-girl]

Welcome Mother1943,

Have you had treatment for CLL during those 20 years?

gardening-girl

[Mother1943 in reply to gardening-girl]

No, just the immunoglobulin infusions for the last 2 years. I have been very lucky😊

[SlowCLL]

Welcome Mother, 1943 was a very good year.

Owen

[Mother1943 in reply to SlowCLL]

Yes it was😊

[Jacksc06]

Welcome to the family.

[Mother1943 in reply to Jacksc06]

Thanks 🙂

[Mother1943]

Thank you

[Sushibruno in reply to Mother1943]

I love posts like yours, thank u very much. This makes me feel good.

[Palmetto]

Interesting. Although husband has almost nonexistent IGG at 264 has only gotten IVIG when he had autoimmune anemia once. I wonder why some people get it so often? However since covid quarantining he hasn't had any illnesses or infections so that may be why.

[HopeME in reply to Palmetto]

I believe you are correct. His lack of infections is likely the reason he hasn’t received IVIG. The typical criteria for IVIG is low IgG and recurring infections. It’s good to see his immune system remains strong enough to avoid infections albeit likely due in some part to his quarantining.

Best,

Mark

[Mother1943 in reply to Palmetto]

The reason why, I think, is because of the sinusitis that I deal with on a daily basis.

[Palmetto in reply to Mother1943]

Here again I think it is the isolation since we virtually only go out to go to lab visits or infusions because all of his life he has been plagued with sinus infections to the point he had sinusectomy about 30 years ago but still pretty much constantly had issues with it and always had to use a nettie pot which he still does, however, no ENT visits at all since the covid pandemic since he wears masks whenever going out. He hasn't been to an indoor restaurant at all and only once or twice a short visit to the grocery store. This is something positive from the mask wearing! I know how aggravating sinus infections can be! Take care and I hope you stay treatment free another 20 years.

[Mother1943 in reply to Palmetto]

I too had sinus surgery, December 2019, before the pandemic appeared. Did not help my sinus problems.Wear a mask whenever out shopping as well. Stay safe.

[Ellieoak]

Woohoo! Good for you! That is great that you’ve made it through 20 years.

[Mother1943 in reply to Ellieoak]

Thanks 😊

[JigFettler Volunteer]

Hey! Welcome! Pls share with us the wisdom you have gained from 20yrs with CLL!

Jig, from a heat waved UK.

[Mother1943 in reply to JigFettler]

Thank you. I have to say, at first I was worried. But, as life happens I did not worry or think about it. Husband, children and grandchildren to care for.

[Panz]

Welcome to out very special community and I am just so happy to hear you have had CLL for 20 years…it gives hope to a lot of our members. I have had treatment off and on for the 32+ years that I have been diagnosed with CLL. I am currently back on Watch, Wait and Worry! I am also receiving IVIG every 4 weeks and have been for almost 5 years. It keeps me in a very good place,

May you long remain healthy and continued good fortune!!

Panz 🙏🙂💕☘️

[Mother1943 in reply to Panz]

Thank you Panz

[Ashwas in reply to Mother1943]

I am in India. I am also with CLL for last 20 years.However, treated for secondary cancer in rectum wit new adjuvant therapy.

CLL count has now again increased to50000.Platlets down to 1 lakh. But still under wait and watch

[showdog]

Welcome

[Mother1943]

Thank you.

[Grad99]

I was diagnosed 22 years ago and CLL was dormant for 20 years - only stress of daughter getting cancer set it off but I’m still W & W … the way things are going I’ll start some kind of treatment in the next year but welcome …. I was born in 1943

[Mother1943 in reply to Grad99]

Thank you. So sorry about your daughter.