I am still so new to all of this and am an 'outside the box' thinker, as my body does not respond good to pharmaceuticals, so of course I always work with body, mind, soul, good eating, exercise, supplements, etc.
I was diagnosed with CLL (then Dr. Davids felt I was more SLL) in Feb '22. The only symptoms were swollen nodes in my neck/underarm that appeared 2 days after my Covid vaccine. It took 8 months and my general/thyroid NATUROPATH to be the one that sounded the alarm and sent me to a hematologist for testing.
When I was told, I decided to go with Cancer Treatment Center of America in Phoenix (I live in Tucson) because they use to be state of the art, more integrative in much of their thinking and very caring...boy how times have changed in less than 6 years when I helped a friend move through her cancer treatment (blood as well).
My initial visit there left me feeling like, this will be fine while I'm on W&W, but something will have to give.
The oncologist (director of hematology, but NOT a CLL expert) was putoffish, did not want to give time to my alternative way of thinking and was just rather flippant. He took the FISH test the TP53 and IGHV.
We had a telephone call when the FISH test came back (normal) and he said the other two weren't back, he'd set up a call when they came back to discuss. He did NOT explain what ANY OF THESE TESTS MEAN, indicate, etc.
During this time I contacted the CLL Society and was put with Dr. Davids (what a cool guy) and we did a ZOOM after he reviewed my records. In a 30 minute session with him, I started to GET IT....phew. Then after a month NOTHING from CTCA on the other tests and no response when I inquired. I scheduled with my now naturopathic oncologist and FINALLY got the results of the other 2 tests which put me on the edge....seriously. You don't understand all of this and I'm seeing that I am unmutated IGHV and a NOTCH1 mutation. I immediately contacted the nurse and said, Dr. Schriber needed to call me to explain this cuz I was about suicidal on this. She emailed back saying "it's no big deal, you're fine, he'll discuss it at your June apptmt"...I said, 'nope'. She didn't budge. Back to CLL Society....Dr. Davids reviewed it and sent me his opinion and a better explanation. NOT MY DOCTOR.
So my basic naturopath (who works with my HYPERTHYROID) ordered extensive blood work in April, then CTCA ordered work in June, 3 days after I tested negative for Covid, after having a moderate case of it and still feeling sort of pukey.
My WBC had doubled (35) and my 'cytes' were all elevated... Dr. Schriber gave me 10 minutes of his time on the phone that was suppose to be a 30 minute telemedicine and he played it down (because I feel GOOD). Said we'd retest in 2 months. So 2 months I worry and wonder and freak out.
Today I went there and he comes in and says I am STABLE...that the WBC is a bit higher, but everything else is about the same. He did not offer to show me the results, nor explain anything other then to say this (I took a friend this time). When I got home I brought up my labs and they are not what I would say are stable. It's clear things are progessing...
With a history of hyperthyroidism (took 4 years and a naturopath to get that diagnosed after 6 endocrinologists couldn't....plus a history of 40 years ago of Hep B and my body's hate of pharmaceuticals...these are things I need to understand and have explained.
I have follow ups with both naturopathic doctors and they go over everything carefully, but I need a CLL EXPERT....
If anyone on here is in the U.S. and can throw out some names, thoughts, ideas...good mojo and also help me understand how blood can be in my mind not good, how can it be okay for this doctor.
Do they really just say if you feel good you just hang out?
Tearing my hair out at the moment. Thanks for listening (reading) my emotional rant. Love, Light and Healing. Barbara
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Tirawa
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So sorry your doctor didn’t take the time to explain things better to you. When your hear the word cancer you want to do something about but with CLL indeed we watch and wait. As long as your numbers look good and you don’t have serious b symptoms such as an enlarged spleen, severely swollen lymph nodes, fatigue, night sweats etc. treatment is not needed. Some people’s wbc will go up into the 100’s but as long as rbc, hemoglobin, hematocrit, platelets and neutrophils are in range and patient is feeling good most doctors will wait to start treatment. I would also suggest to look at your ALC which is a better indicator how you are doing than your wbc. Check out the CLL Society website, they have a list of CLL doctors. They also have excellent info about anything you need to know about CLL. It used to be that being unmutated made a difference in which treatment you should get but with the newer drugs on the market it is no longer that much of an issue. I hope you will find a doctor that will work with you. It seems you take great care of yourself which is important, exercise and diet are definitely important while on this journey.
Barbara, I don't live in the USA. I haven't been there and I never will (at least not in this life).
But you should be aware that you have at your disposal the best treatment system for our disease. The NOCH1 mutation is characterized by a non-mutated satus and a higher initial leukocytosis, more pronounced lymphadenopathy. It is more common in trisomy 12 and almost it never combines with a defect in the TP53 gene, which is good.
It matters in that your CLL will be less sensitive to anti-CD20 antibodies.
However, there are more modern approaches with other types of drugs that are less sensitive to unmutated IGHV gene status.
The important thing is to make the most of the opportunities provided by the system in the USA by finding a doctor who deals with CLL.
Here I am sure that our colleagues from the USA will get involved and help you.
You should not worry too much because no one can accurately predict the events here.
Read about CLL, educate yourself. That way you will understand what CLL is.
Be sure of the support you will receive with us.
The admin team is great and will help you tremendously.
Since we all have mental damage from CLL, use your love of nature and animals to relax.
I started walking intensively (according to my understanding) in the mountains and it "resets" me every time.
Share more data from your CLL analysis to get an adequate response to your queries.
There are quite a few people here with experience and deep understanding of CLL.
I am sending you roses from sunny Bulgaria. The rose is the most Bulgarian flower.
Good on your naturopath for encouraging you seek specialist attention. I'm sorry to read how your local CLL specialist didn't meet your reasonable requirements to help you understand the impact of your diagnosis and your prognostic markers. You'll find all that explained in this community. Check out the Pinned Posts section: healthunlocked.com/cllsuppo...
With respect to your markers, even with your understandable NOTCH-1 concerns, the best indication of your likely time in watch and wait is the rate of change in your Absolute Lymphocyte Count, (ALC), your haemoglobin and platelets. Small changes in these are considered stable. Your ALC can also bounce up and down considerably. Specialists don't really begin to take much notice until they climb over 30. Then they monitor the doubling time. If that drops under 6 months, then they look for other, confirming indications. The number of lymphocytes isn't that important - we have members with counts in the several hundreds up to around 600.
You should also consider joining a CLL support group where you will be able to hear how others have handled their CLL diagnosis. I see the closest one, which looks to still be virtual, is the Orange County group, which I know has some very experienced CLL patients
This is an ongoing study at NIH in Bethesda, MD for untreated CLL. They are following people with untreated CLL to see how the different genetic markers affect time to treatment. You pay for your first trip there, then if accepted into the study, they will pay for subsequent trips (including your flight home) My husband’s CLL is very stable on watch and wait, so he only goes once a year, but it’s great just feeling to know there’s another set of eyes and another opinion on your particular case. Susan Soto at NIH is the contact for this study.
Find a Doc that works for your comfort level. CTA is a for-profit organization. Do not expect individual care. See… Company profile page for Cancer Treatment Centers of America Inc including stock price, company news, press releases, executives, board members, and contact information… . Face time costs the corporation money. It seems it's about 'Units" (Patients) per hour. I've had a recent hospital experience with “hospitalist”, never the same person from day-to-day, and all they know about me is what is on their tablet. I have had the best treatment at teaching hospitals. Nothing like 4-6 students pouring over your medical challenge, guided by a teaching physician. It's like having a team of consultants.
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