Newly diagnosed.

[Campmack]

Hi, I’m brand new. Was diagnosed with SLL/CLL in Oct. am going for a second opinion at MD Anderson late next week. Have no idea what to expect.

[GMa27]

Welcome! MDAnderson in Houston?

Has a great team and reputation.

Basically they will go over previous tests and draw blood for present results. They may order more tests.

Do u know your markers and whether you are mutated or not? 💕

[lankisterguy Volunteer]

Hi Campmack,-

Since you asked, there's some homework for you to read in preparation for your appointment at MD Anderson.

-

It's on this page in the box labeled "Pinned Posts" and titled "Newly diagnosed...."

healthunlocked.com/cllsuppo...

It's a long read, with many imbedded links. If you work at it dillgently you will be far better prepared to ask better questions and comprehend the answers.

-

To be an exceptional student, write out questions as you study and keep refining the list for clarity. Then print 3 copies to take with you. Give a copy to the nurse to include in your file. Give another to the doctor and keep the 3rd to make notes.

-

Ask the doctor if you can record the session and be prepared to use your cell phone (Easy Voice Recorder on Android or the native feature on iPhone).

-

Len

[EugeneL2]

I went to MD Anderson in 2018 for a second opinion and have visited yearly afterward. My first visit in 2018 took about 3 hrs. They took 14 tubes of blood at the beginning of my visit. The doctors preferred to do all the tests, even if you just had some of them elsewhere. The tests they did were state of the art, especially the 22 CLL gene panel, which looked for mutations in 22 CLL-related genes. The tests included Fish panels, IGVH mutation analysis, CD4/CD8 ratio, AIHA, and detection of various viruses in case treatment is needed. I met two nurses and a CLL specialist. They did a physical exam and looked through my medical records I brought with me. The doctor even wrote down on a paper my treatment option if I need to start the treatment in the next few months. Overall, I was very pleased with the visit, which gave me great hope and confidence in living with CLL.

[stevesmith1964]

HiI had a routine blood test in late October. The Haemoglobin and platlets were low , WBC normal but film looked strange. Within 10 days I had full blood work up, bone marrow and node biopsy, CT and PET scan. After all that I had a 2 unit blood transfusion and was confirmed as stage 4 CLL, which was a relieve to be honest as some of the alternatives were scary. I had no symptoms at all. Started on 3 sessions of Obinutuzumab in 16 days and ibrutinib. 5 weeks on still feel great, bloods improving slightly and enjoying my retirement as daddy day care for my 3 yo and 1 yo.

[estaff01]

You can get a free 2nd opinion thru CLL Society. You should join. I think the firm that confirmed my 2nd opinion was was Infinite

[Big_Dee]

Hello Campmack

I was very fortunate, my GP was well versed in CLL and diagnosed me before referring me on to a H/O. I still see a MDA affiliate CLL Specialist every 6 months. Frist visit at will be lengthy. Blessings.

[Smakwater]

Campmack,

Consider asking the specialist, "What is the greatest factor providing hope for a CLL patient today and in the near future".

Please come back and tell us your view on how it went.

All the best,

JM