Had CLL for about 2 years, Dr is now thinking of treatment

If you start treatment there are other treatments like Rituximab infusion. That is once infused not an on going treatment. You may want to get another option. Can you feel the swelling of your Lymph Nodes? Is it a one time thing or are always swollen? If so then you may want to consider treatment. Just my suggestion.
EM-G

You thoughts about swollen Lymph Nodes in your abdomen is sound!

If you’re working with a local hematologist, see a CLL expert for a second opinion. It can even be virtual. See the CLL Society website.

I fully agree with minnesotajim. I'm in watch and wait and unmutated. I would never start treatment without asking an expert first.

Second opinion recommended by a CLL specialist

I have had CLL/SLL for many years and have not had much treatment, but have found the site HealthUnlocked a really useful place to get information and listen to others with this disease discuss their experience. Might be a good place to pose your question. I have migrated to this site, because I have now been diagnosed with Thrombocytosis, with JAK2 mutation.

Weird for a doctor to "ask" if you would like to start treatment. He's the doctor not you. My numbers were all good for about 7 years when they found a node in my chest right at the intersection of both breathing passages, making me eligible for treatment. I lasted 6 weeks before I came down with Covid and had to stop. Then my numbers were so good I was able to stay off meds for 7 months. I then re-started them as my wbc suddenly was doubling. I lasted another 6 weeks before I recently came down with a severe tick related infection and had to stop again because of auto immune issues related to meds. After being on heavy duty antibiotics for tick bite my labs are very good again and doc wants me to start leukemia meds again (Zanubrutinib). I'm going to do it but I have a really strong auto immune system until I start the meds. I will start them but am not going to enjoy it especially with Covid coming around again. 😳.

Hi @artymarty, welcome to Connect. It’s not as cool as the old treehouse club when we were kids but having a blood cancer gets you an exclusive membership…a dubious distinction to be sure. ☺️ I’m a member myself and though I wish I hadn’t had a serious blood cancer, (in remission) I have met the most amazing people in this group.

As you’ve found out with your CLL/SLL condition there often are no treatments early on in the game and only monitoring of routine labs is necessary. Now you’ve been diagnosed with a new player, the JAK2 mutation which is causing your bone marrow to churn out too many platelets in a condition called Thrombocytosis. There are a number of members who have ET/JAK2 mutation and have shared their stories and experiences with others. Here is one of the discussions you might helpful:

~Essential Thrombocytosis symptoms
https://connect.mayoclinic.org/discussion/essential-thrombocytosis-symptoms/
With @lynn22 @edgy @sandy1959 @sregiani

Here’s an article from one of my favorite sources on the significance of the JAK2 gene and what changes the mutation can bring about. https://www.verywellhealth.com/jak2-mutation-5217909

There are many other references to ET and JAK2 mutation caused conditions in the forum. You can type in either of those two words in the search bar above and it will bring up a large list of relevant conversations for you.

With your newly diagnosed JAK2 mutation and your body making too many platelets, are you now having to start treatment?

Thanks @loribmt. thanks for your reply. Very helpful. I appreciated the references. I have one more ultrasound sound to complete ( abdomen) this week, then see my oncologist/hematologist Aug 22. So, will see what, if any, she thinks will be helpful. I am already on xarelto (5mg/day) and baby aspirin due to a recent peripheral artery disease. All very puzzling, as I keep pretty fit, eat pretty well, so I guess the profile I fit is age ( just turned 80) and being female. Anyhow, doing my best to keep positive and figure out best ways to keep the various disorders under some control. Will post again once I have the Aug 22 conversation. Thanks.

I know from experience how puzzling these blood cancers can be. Similar to you, I’ve lived a very active, healthy lifestyle and still ended up with a shock of a very aggressive form of leukemia. However, I was told repeatedly by my medical teams that it is because of that lifestyle and positive attitude that I recovered so quickly!
Cell mutations are beyond our control. The older we become, the more we’re exposed to a zillion factors that can cause a change. And some just happen randomly. It’s how we cope with the changes that keep up moving forward. HA, we didn’t get to be wise ‘women of age’ by being sissies! ☺️ So keep up your positivity and take this all one day at a time.
I have to ask…Arty Marty…what’s the story behind your name?