CLL leukemia: Just diagnosed, what can be done?

Dear hope you are getting better in the soonest time , At What age did you get CLL?

I am 67 and was just diagnosed with CLL. Awaiting more testing and surgery.

@shirlpat

Hi shirlpat, sounds like you are still in the diagnostic process to determine the treatment plan. Has it already been determined that you’ll have surgery? To remove the spleen? How are you doing?

The only surgery scheduled is Wide Neck Dissection. My age is 87 not 67.

There are no symptoms. So far, ,every year we do general test and till 2021 every things the go well , in the last our test that we do in 2022 showed that there was an increase in the white blood ball and an increase in lymphocytes only, according to a blood test (wrote that mostly CLL), and now I am waiting for the result of the bone marrow and an accurate blood test, you What do you recommend?what we can do for this stage ? It’s dangerous or ..?your reply is highly appreciated dear

Hi @sonia85. You should take some encouragement from the fact that this has progressed very slowly over the years. Truly, I know waiting for results is so frustrating! We want to know the answers so we can take charge!

You’re wondering what to do at this stage. Well, you’ve had the bone marrow biopsy and exam (BMBX). That takes a good week or more for every aspect of that biopsy to be completed. However that’s an important test because it takes samples directly from your body’s blood manufacturing site. That will help give your hematologist/oncologist a clearer picture of what’s going on with your blood cells. The BMBX along with a comprehensive blood test will help them provide you with a firm diagnosis so they can get you started with a directed treatment…if it’s needed.

As I mentioned earlier, CLL is often a slowly developing form of leukemia on the lymphatic side of the blood. Because it is a form of leukemia, a blood cancer, it can be dangerous as it progresses over time. Frequently, when first diagnosed, patients are on a ‘watch and wait’ protocol which can be unnerving because we all want to treat an illness and get it over with. But in the case of CLL it is often better to defer treatment until the hematologist feels it’s to a point where intervention needs to happen. So let’s wait until you actually get a diagnosis to see if you even have to go down that route. From experience, speculating only leads to unwarranted anxiety. ☺️

How did you do during the biopsy? With or without sedation? I’m just curious. We’re a divided camp on that. I’m all for sedation as I’ve had so many. I like waking up and having it over…and being treated to Lorna Doone’s and apple juice. There are other members who think it was a breeze without.

Do you have a consultation appointment soon?

Thanks for your information dear ,yes I did it with sedation, actually in the current time a dont have any love for food cuz you know am worrying about everything because it’s not clear enough , another question am 64 now , at which age u got Cll? And now u are in the which year ? Still u have Cll , or did you take treatment ?sorry for saying that just am wondering about the stage of Cll

Hi Sonia, I can completely understand how all of this uncertainty is messing with your appetite. Even normal activities like eating or trying to relax feel impossible because our brain just won’t let go of the ‘what ifs’…

The best way to get through this phase of waiting for your doctor’s report is to distract yourself with things that bring you joy. Also staying busy with your normal daily routine is important too. You can take control of this anxiety and worry. 🙂

I guess I wasn’t clear about what cancer I did have. I am a leukemia survivor but it wasn’t CLL. At the age of 65, I had Acute Myeloid Leukemia (AML) which is a very aggressive and a rapid onset blood cancer. After treatment with chemo and ultimately a bone marrow transplant I’m happy to say, 3.5 years later, my doctors (and I) are highly optimistic that this is all behind me now and I feel fantastic.

Since my transplant it’s been my privilege to help others who are going through their own blood cancer journeys, to let them see there is hope that this isn’t the end of their story.
One of the members I mentor is featured in this nice story that was in our Mayo Clinic Cancer blog. You can see what I look like! https://cancerblog.mayoclinic.org/2022/09/07/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I know you’re really scared and filled with worry for what might be ahead. But you don’t even have a firm diagnosis yet, so worry about ‘what ifs; is only going to foster more anxiety.

I’m here for you and there are also many more members in our forum who have CLL who will help guide you along this new personal journey. But first let’s find out if you actually need any treatments at this time.
Do you have a spouse, family members and friends around for support?

The "Whole Genome" test and analysis is the real cornerstone of modern personalized medical practice. Most genetics labs, when they look at your genetics, look at tests for individual genes, or sets of genes, or smaller group called exomes. The exomes, such as many labs study, are simple groups of 1% or less of your total package. That total package is called "Whole Genome", and the insurance will want it to be collected and analyzed in the manner prescribed by Medicare. This universalizes the outcome, and gives credibility to the process. A few, such as Nebula Genomics and some others, will do the "whole genome" for a few hundred dollars more, perhaps $500. This is the 100% package, processed 10 times, 30 times, 100 times. The more runs they make through your sample, the longer it takes and the more it costs. Now, I do not know which lab is best, but I have had good luck with Sequencing.com, Ambry.com, etc. They will also send you a variety of reports for a small extra fee, and provide some counseling in the field. I know Ambry is good, and LivingDNA.com, and many others. Just treat this as an opportunity to understand life a little better. oldkarl

Thank you, I was 71 when diagnosed.