Finally seeing my new doctor today

[Moonmyst]

Hi, I am going to see my new CLL doc today. It's been almost 2 years since my diagnosis and nearly that long since I have had decent follow-up care because I have spent the last few years taking care of my dad until he passed recently. Now it's time to take care of me and I'm pretty anxious. Until recently, I have had any significant CLL related issues. Since then it seems like things are just spinning out of control and, of course, I assume the worst because, hey, that's what I do. I have enlarged nodes in my neck and abdomen. A CT scan in March showed an enlarged spleen as well. I am absolutely exhausted all the time and have no energy. I frequently feel so overheated that my glasses will actually fog up. Sometimes I wake up at night and my hair is soaked with sweat... and in the last few weeks I have also had shortness of breath with little or no exertion. I'm concerned I may be anemic but, of course, won't know anything for sure until after bloodwork today.

Anyway, just needed to express my worry in a safe place. Thanks for reading!

Moonmyst

[nanasu]

Hope your appt gives you some answers and that you get the relevant treatment. Normal to be anxious, we all get that feeling especially when waiting for blood test results.

Best of luck.......take care.

[MsLockYourPosts Passed Volunteer]

I hope that your appointment went well and that your new doctor is a good match!

[antonb]

it is important he does the right tests , not only FISH if you didn´t have it , but the IGVH mutation is crucial, hope he is a specialist.....

[Milla15]

Goodness you have been having a tough time lately. My sincere condolences on your dad's passing. A refocus on your own wellbeing sounds very timely, and of course you are anxious with the symptoms you are experiencing. I hope your new doctor is lovely and gets you feeling more comfy very soon. Sending hugs xx

[Smakwater]

Commendations on taking care of your dad Moonmyst,

The symptoms that you describe indicate progressive disease. I encourage you to see a specialist and pursue getting better.

You are right, it is time to start taking care of yourself.

JM

[Siberunner]

Good luck to you. I’m sure knowing your labs will help alleviate some of the concern. My prayers it goes well for you.

[LynnB1947]

Let us know how your appt goes. I really like my CLL/SLL specialist of 7 years. He put me on ibrutinib in 2014, & it continues to work. Best wishes from Texas ...