First posting.

[Chemong]

I'm 74. Have cll for 4 years, just had tests yesterday and in last 3 months my wbc went from 80,000 to 120,000. Doc at stanford has been waiting watching. I hear about a pill that costs about 400 a day that buys a little time but I have no insurance. Meanwhile I'll try mayo clinic stuff where they used large doses of green tea extract. Will alternate it with curcumin. So far only symptoms are pain when I turn my head, some night sweats, and maybe it's cll causing some back pain high in the back. Any advice would be helpful.

[JR1964]

Welcome, you now belong to an amazing group. Now first thing first, is your doctor a CLL Specialist? If not, and you are able to , please get one. Even if you consult with one that would be great. Most Specialists work great with other doctors. Your pain just may be back trouble- more than likely- but always good to bring any concerns up with the doctor. Night sweats are common with CLL. I been on WW for 9 months. I have some issues as well. Sinusitis, bad back and knees( had for years) . On my third doctor for CLL. My last one is in charge of the Leukemia Department at MDA. He is great. Was one of the best decisions I made. The green tea and Curcumin seems to be used by many and people say that it helps. Other members can provide links to previous posts to help you on this subject. So stay true to taking care of yourself. STAY STRONG AND REMEMBER THAT A CURE IS COMING SOONER THAN LATER J.R.

[MsLockYourPosts Passed Volunteer]

Is your doctor at Stanford part of Doctor Coutre's team? He is well known in the CLL world. I assume that the pill you are talking about is Ibrutinib. Is your doctor recommending it? It may be that he / she wants to see whether your count will stabilize, go back down, or continue to go up.

Have you been collecting your lab results since diagnosis? Stanford probably has a portal where they are reported. The number to follow is your absolute lymphocyte count (ALC). It gives a more accurate picture of what is happening than the WBC. Also check your HBC (hemoglobin) and your platelets. You want to look at what those numbers have done over time. Trends are more important than an individual lab result. Those can sometimes just be off for some reason - lab error or whatever.

Unfortunately there aren't many programs for financial aide for those without insurance, but the bigger institutions, like Stanford, usually have social workers or financial aide advisors who are good at finding any help that is available. That would be worth looking into now, so that you have things in place should you need treatment down the line.

If you go with green tea, be sure to have your liver counts checked regularly. It is impossible to get the dose or purity of the pills used in the Mayo study. Several have discussed using green tea here. You might want to read about what others have found about it's use. The lead doctor for the study advises against trying to duplicate it, but there are some who feel that it helps.

[yazbe]

Hi, Chemong ~ pardon me if this seems too personal. At age 74 (assuming you live in the United States), you should have Medicare, parts A, B, and D. Perhaps your statement regarding insurance refers to not having a Medicare supplemental insurance? I am pretty well-versed in health insurance matters and would be happy to discuss this with you if you'd like. Wishing you well

[thompsonellen]

Perhaps ask about a clinical trial. That pill has bought people many years of time, including me. I was charged for ibrutinib but the other meds on the trial that weren't FDA approved were free.

[ladyprescott]

Welcome to our group. Reading the posts above reminds me to ask (if you're in the States) about Medi-Care Part D which is the drug program. At 74 it is a requirement that you have it unless you decide not to. I let mine lapse for a few years and got my hands slapped and now pay an extra fee for letting it go. That being said, Part D will help with your costs along with several institutions that provide help for CLL patients. Call Stanford and ask about help with meds. Also, even though your white count is high (you didn't mention your ALC) doctors don't get too excited about it unless there are other things going on in the blood. My hemoglobin began going down to the point I became anemic. I had to start treatment. Give us some more information on your hemoglobin, platelets, neutrophils. That would help. Also, always ask for a copy of your blood draws. Make a folder so you can look back to see what is progressing. Wish you my best. Carole

[Canuck901]

Did you try a veggie , gluten free and dairy free diet ? What stage is your CLL, are you seeing a CLL specialist ? You also may want to look for trials

[Corkyrissa]

Welcome too an awesome site. I’m 74 also, and because of our age I don’t think we are eligible for a clinical trial. If you live in the US you must have Medicare and a Part D medication insurance . You can contact the Pan Access Network ,known as PAN 1-866-316-7263 or the leukemia and lymphoma society known as LLS 1-800-955-4572 to apply for grants. But if you have served in the military,or were in Vietnam (soldiers who were in Nam and exposed to Agent orange some have cll) the Veterans Hospital in your area can help you. I take imbruvica ,one pill every night . I have a Part D insurance plan, and the grant I have from PAN pays the copay of $579.81 each month directly to Diplomat Pharmacy. In January the copay for the medication was $3038.00. You still might not need any treatment for a while and don’t worry they have so many treatments for us now. Just make sure you have a cll specialist. Wishing you well. 🙏🙏🙏🙏