Watch and Wait - Thanks to All

[Sillysand]

Just want to thank Neil, SofiaDeo, CoachVera55, Big-Dee , Newdawn, CLLerinOz AND ALL the folks who contribute. Tomorrow will mark 4 months since being diagnosed . My oncologist finally is referring me to a hematologist which I see tomorrow. After reading different post , yes I do see that its best to see a specialist and that as Neil states "Smart patients get smart care".

Thank you for all your great articles Neil and the user friendly way that you can just click on. One of the many challenges with CLL I find is that I want to learn and apply other folks experiences , but as you pointed out CLL is very heterogeneous . As I read Newdawns's Anniversary update , once again I stress about the possible ( Inevitable ) infections and complications that CLL bring. The complexities of CLL feel overwhelming . As I see my immunoglobulins getting depleted while my WBC's rise , at times I find it so bloody unsettling that I have little to Zero control of it . Yes I am working on improving my over all health and I did have a Prevnar 20 shot. Still stewing about the shingles shot. I will ask the Hematologist tomorrow about what other things he recommends. I will also request a FISH test and a Notch-1 test. I will also ask about seeing a CLL specialist .

Thank you to ALL who share your story and experiences , as Newdawn stated , all the shared camaraderie is very invaluable. I too agree ! As a newcomer I really appreciate hearing from you old timers (lol), folks that have been dealing with CLL for years, your words of encouragement , your words explaining that CLL is not the death sentences that goes through your mine when your first told. I was better at being an advocate as a nurse, than I am at being a patient. The thought of needing very toxic drugs in future is very unsettling to think about . But its become very apparent to me reading HealthUnlocked stories that I need to be appreciative that CLL is now consider a manageable disease . Wish me luck .

Newdawn , you are in my prayers.

Almost midnight , gotta go to bed. Thank you everyone. forgive me for rambling.

[lankisterguy Volunteer]

Hi Seeker090260,

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It's great to hear that you are climbing the learning curve.

Since you are in the USA and considering finding a CLL expert, you may want to use this free service:

cllsociety.org/programs-and...

and then see which CLL expert doctors are near enough to consider:

cllsociety.org/newly-diagno...

Then get some peer support: cllsociety.org/newly-diagno...

Len

[22011]

Seeker, as a nurse you well know stress doesn't help. You say "I stress about the possible ( Inevitable ) infections and complications that CLL bring. " These things are not inevitable, it depends on your particular case. I was diagnosed 14 years ago and warned by my hematologist that because of the immunosuppression I should seek treatment immediately if I were to get sick. Even though my immunoglobulin levels are quite low they are apparently still protective and I have had nothing other than a common cold since then. I don't make many antibodies to the covid vaccine (have had 6 shots now) but I take precautions and have not had covid. I didn't need treatment for the CLL until a couple of years ago when my numbers went up and my spleen enlarged. I started ibuternib with immediate excellent results but the side effects were severe and some remained even after reducing the dose. Although most patients seem to stay on the drug forever I asked to go off it after about a year when my numbers (except for lymphs) were down to almost normal and I was sick of the side effects. I have been off the drug for 1 ½ years now and my numbers have been only slowly climbing so it's back to watch and wait. It may be a long time before I need treatment again. Just to say, please think positively. It may be that the people who contribute to this network are the ones with more severe disease who are looking for help or want to share their insights. People with milder disease are out there though, so try to relax and just see where this disease takes you. Also, new drugs are coming along that have fewer side effects. You may never need a drug considered truly toxic.

[CoachVera55]

Wow that was so insightful 22011. I too am an RN 30yrs & make a better nurse than patient too.

I am so pleased to see my name on the list of those who helped you. Like 22011 said, milder forms must be careful not to be over medicated. Effectiveness & Side Effects must be weighed out. Benefit vs Risk. Educate yourself, bond with your doctor (it makes a big difference), have them answer all your questions, then LIVE your Best Life. Worry doesn’t add anything but it stills your joy. We are fortunate not to have a ‘deadly’ cancer. I was told that CLL is the best cancer to have, surely an oxymoronic statement but I still found peace in knowing that. I just take the best care of myself these days & don’t feel guilty about saying no to people, places or to situation that diminishes my peace or safety. I have always been a Rules & Safety Gurl🤷🏽‍♀️ I literally was in denial until I read that I was stage 4 & when I became too symptomatic to ignore or deny it. I have lost many friends to worst cancers & they did not have the advanced treatment that we do so I push everything to not be depressed but to count my blessings. I employ us all to count our blessings & I bet they outweigh the bad👏🏾👏🏾👏🏾

I don’t go out much but when I do, I turn heads, not just for my beauty but for my Armor🤣