Thanks, Jo6, and welcome to my team. I agree with you. These days it appears that only the wealthy can afford to get the best healthcare available. The rest of us have to rely on whatever is available through our insurance coverage, and it's not easy to "doctor shop". I am also amazed at the cost of dental care! If you need major work, or even just a crown, you have to go into credit card debt, and that's just wrong. I looked up the dates and I my lymphocytes started climbing in July of 2020, before vaccines and having Covid in August of 2021. ME/CFS, etc. was diagnosed around that time, but I had been having symptoms for a few years before that and most doctors don't even consider looking at ME/CFS as a diagnosis, or for that matter, even know what it is. It's like, if you don't have a fever, you must not be sick (I've only had a fever a few times in my life). The true fatigue started after I had Covid, but lymphocytes were going up too so I believe it was also a cause for this horrible fatigue that never goes away. When I was actually diagnosed with CLL, I asked for a CLL specialist at Kaiser and was told that the oncologist I had seen (the one who said it doesn't cause fatigue) is a specialist. Oh, well. We moved out of the Kaiser area so have to start the hunt for other insurance soon, and I have no idea which one is best. And, as for your exposure to Agent Orange, I would conclude that it could very well be the cause of CLL! I used RoundUp on my lawn numerous times over the years, and it's been proven to be a cause of leukemia, too. As far as CBD oil, I am going to try it for chronic pain and fibromyalgia. I have to research a good source for it. All this research! Yes, we have to advocate for ourselves because.... back to the conversation about doctors... 🤯. KEEP ON KEEPING ON, I hope you have a good day. When the sun is shining in Seattle, there's nothing like it (my husband is from Seattle).

Hi Laura - I just added myself to your team. Thanks for speaking your truth. Including the Oncologist who diagnosed me in 2015, I've seen 6 different Onc docs - not in Kaiser. One left to work for a pharmaceutical co. which I see as the ultimate betrayal. One was fired, one retired, one I moved on from to my current doc who just tried to push me onto another doctor because his partner left and he took on double work load and I was considered too labor intense. I called him out on it. Our medical system is broken and frankly doctors are so hamstrung and regulated they aren't allowed to give advice. IMHO no caring individual wants to enter into this quagmire of profiteering for billionaires. In fact I was told by my doc that medicine is no longer a "patriarcal" system but we are in the driver's seat about our own treatment. WTF? We now are our own experts. Sorry to be so glum, but it has been my truth and stands to even worsen with the new political greed structure. I can't believe your doc had the gall to say fatigue is not a symptom. It is #1, especially with your other conditions. I'm curious if your ME/CFS & fibromyalgia were diagnosed before your CLL? My GP of 33 years was on the verge of testing for those things right before CLL was diagnosed. Personally I think that my CLL started 38 years before when I was exposed to Agent Orange. I was NEVER the same after. Personally I believe there is ALOT of truths are hidden from us including food contamination in America due to corporate greed and allowed by our gov't. I haven't heard about interaction with CBD oil and use it occasionally. It helps with localized pain. Personally I would be open to any natural solutions that would ease my symptoms. Unfortunately cannabis doesn't agree with me but might be a good solution to my sleep problems. Remember the pharmaceutical industry doesn't make profit from any strains of cannabis, so they would put out studies to curtail its use. Trust your gut.

I did not like "watch & wait" before I even knew what this was and shy I could not get any answers for my questions except "don't worry?" My new medical team (10/23) used "share & care" and answered 90% of my questions and provided my request for medication. My medical team also requested awarded a free grant from Leukemia Society to pay for co-pay $3400 for monthly medication. My medication was FDA approved 12/22 and I had no ill affects from the pills. I think the delay for doctors prescribing medication is more about the cost versus people's illness? I hope you can use th eRESOURCE section to find answers about your illness, medication, treatments. I had read 9/24 that there may be a new medication for CLL which is in the test phase now. I know that leukemia is evolving and changes so that effective medication may not be effective so the "control" of the illness may fail? The new medication does not use the current BTK Inhibitor (this attaches to bad WBC to inactive bad cells and does not attack healthy organs) but in a few year the new BCL-2 (B Cell Leukemia -2) will attack the cell mitochondria to inactive the cells. I hope you are eating health and exercising to improve your physical health and mental health.

Yes ..we can't sit and do nothing we have to help ourselves.. also the Doctors Don't know everything there is about leukemia we have to research it..and see what we can do for ourselves....

Jo6: You mentioned the CEO who was killed in New York. When I read what his "compensation" was for a year ($10 million!!!), I wasn't surprised but was very disgusted. Capitalism is NOT working in America. Nothing ever works when people get greedy, or when the government is run by millionaires who enrich themselves every chance they get (I cancelled my Apple News subscription and haven't looked at the news since election day. I can't bear to watch what will happen the next four years). It sure is NOT a government "for the people". I've horrified people by saying I believe in socialism, but most people don't know what true socialism is. If I were younger I'd consider moving to Sweden where my ancestors are. Anyway, we sold our big house in Vancouver, Wa and are happy little clams living in our RV on Long Beach Peninsula. (Although I'm a run-down fatigued happy little clam....). We loved Seattle, but it's grown way too much since we left in the 80's. If you're retired, go to an RV show. I guarantee you will fall in love with one of them. Good luck finding another GI doctor. Seems like Seattle would have so many options with all of the universities, but I guess it all depends on what coverage you have. Take care, sending hugs.