CLL - newly diagnosed

God bless you and surround you with a long healthy life to come; fellow CLL Member; I too was diagnosed with the chronic form nine years ago and never had to have treatment until 2016. Best of luck and my prayers are with you. I went with Chemo both times and the first four week treatment was with Rituxan and it was fine, last year, I had Rituxan and Bendamustine, The bendamustine was harsh; I had the shakes, ran a fever and had a few mouth sores but by October, it was winding down; Now, however I have no immune system and could use some help in regaining strength.

I have a similar pattern of symptoms , frequent infections and enlarged lymph nodes and a doctor said I do have Hypogammaglobulinemia. I have suffer for many years and now developed Lymphomas. I knew my immune function was not well but never ever before any doctor suggested that term. I also have been diagnosed with Hashimoto disease and it causes me autoimmune attacks. I would like to know if this Hypogammagobulinemia coud has been caused by the thyroid disease. What doctors do we see for the Hypogammaglobulinemia and if anyone knows where to find a good doctor with that specialty.

I was diagnosed with CLL/SLL and now with Hypogammaglobilinemia...Which doctor see for it and what would be the treatment for Hypogammaglobilinemia? Have anyone visited Mayo Clinic in Arizona?

Hello, I have been diagnosed in 2016 with MBL and after a Lymph nodes biopsy in 2018 they said it is CLL/SLL . I dont have treatment yet but my doctor wants me to start Imbruvica 420 Mg due to symptoms and frequent inflammations. I learned that CLL could be stable but SLL could be manifesting more and not showing in labs as it is in my case. Doctors usually start treatment when symptoms begin causing more limitations, when patients lose weight or experience pain but I am finding out that drugs aren't any easier... I have talked to someone who had the treatment with Imbruvica and she did not tolerate the higher dose. Her doctor had to suspend the medication and treat her with something else for a while. Then he started her with Imbruvica again but 140 Mg which she tolerated better. Her CLL went under remission with the lower dose. She described her tattoos getting red and very sore,, and that she felt very ill with the higher dose. But no one is the same so other people could tolerate a higher dose. My doctor refuses to start me with a lower dose so I refused the drug. Protocols can be an obstacle ,I am very allergic and sensitive and I must be careful with drugs. I am hoping to buy time and see if the Mayo Clinic cancer vaccination gets approved. Seems that some patients under trials went under remission. I hope for better and safer treatments. Meanwhile I try to stay positive , I meditate every day, follow a healthy diet , avoid crowds during Flu season or avoid getting sick by taking precautions. I do wash my veggies well and I eat safe. I learned through other patients experiences. I focus in visualizing myself healthy... Praying for a cure and for safer treatments ! Blessings

Katherine, thank you. On Tuesday the 7th of September I will find out my bone marrow result. I know a treatment will probable be offered at that time. Imbruvica has already been mentioned once by my Nurse Practioner so your words gave me comfort. Thank you.

Hello @tinagibson. Welcome to Mayo Clinic Connect. Waiting is the worst, isn’t it? Today is Sept 5, so two more days until you know your biopsy results. Have you already been diagnosed with CLL and now just waiting to see the the level of the disease? Fortunately CLL is often very slow in developing and can be managed fairly well.

I’m happy to see you’ve discovered Connect and have been helped with some of the information you’ve found from other members who have gone through a similar situation. It really helps to “connect” with people who have walked the walk. That’s what this online forum is all about. Members coming together to offer support, assistance, encouragement and hope to each other.

Will you let me know what you find out with your biopsy?

I will. Thank you

Wishing you only good news on your biopsy results today! Hugs. ☺️

Silly me. It is tomorrow. Thanks

LOL and here I was so proud of myself for actually remembering on time! Well, my wishes have no expiration date… Good luck tomorrow! ☺️