CLL - newly diagnosed

Hello @rmoen,

I would like to add my welcome to @dougmann's. Thank you for sharing your diagnosis with CLL with the other Connect members of the Blood Cancers & Disorders group. I actually merged your discussion with an existing called CLL - Newly Diagnosed. I did this because I wanted to introduce you to the other members who are talking about many of the same experiences as you are currently going through. If you are responding by email, I reccomend you click on VIEW & REPLY and you will be brought to the full discussion.

Once here, you may find it worth your time to read through the other messages and get to know some of the other members who will understand what you are going through. @rmoen, if you don't mind me asking, you were asking about treatments other members have gone through, has your current provider recommended any specific treatments? How are you feeling?

@dougmann

I'm an Australian male aged 69 and live in Queensland Australia.

I was diagnosed with CLL in April 2015 although my white cell count had been just over and just under the Ref Range limit for 18 months prior to that. My GP referred me to a haematologist at The Mater Cancer Care Centre in Brisbane our state capital. He ordered scans, blood tests and a bone marrow biopsy (ouch) which proved the diagnosis.

After a visit to him in August 2015 he authorised my GP to monitor my Full Blood Count blood tests quarterly until the lymphocyte level got to 20. Obviously the Ref. Range in Australia is done differently to the USA. The lymphocyte range here is 1.0-4.0 and the WCC range is 4.0-11.0. Don't know what it means but in both cases the 'Units' are x10^9/L.

My lymphocyte levels have slowly increased over time until 1 November just gone. For instance this year three monthly from January they were 13.08, 13.62, 15.83 and then bang.....jumped to 19.56 which is almost the threshold that the haematologist has allowed my GP to monitor me. She rang me and suggested I have another blood test in early December which would surely put me over the magic 20.

I started to get a little concerned and decided to do an internet search for 'Symptoms of CLL'. Amongst the suggested web sites was Mayo Clinic which I knew to be a respected organisation. I ticked a few boxes with the suggested symptoms and continued reading through treatments to alternative treatments. An extract from green tea, EGCG, has shown promise in killing CLL cells in initial clinical trials so I thought I'd give it a go. I ordered 600mg EGCG capsules and started having one of a morning and one of an evening from about two weeks before a blood test on 6 December. Miraculously the Lymphocyte result dropped from 19.56 on 1 November to 16.40 on 6 December. The reading had never gone down since diagnosis. I told my GP what I was taking and she said 'keep taking them!'. Looking forward to my next quarterly test to see if really is helping.

The White and lymphocyte reference ranges in the US are about the same. 10^9/L is a microliter, which is the same volume of blood used in reporting blood cell counts in the US. The diagnosis of CLL requires a clonal lymphocyte cell count of at least 5K per microliter, and the total lymphocyte count will be higher than that. If lower, and there is no adenopathy (enlarged lymph nodes) it will be classified as monoclonal lymphocytosis, and with adenopathy, SLL (small cell lymphocytic Leukemia).

CLL involves the same kind of malignant lymphocytes as SLL and is therefore essentially the same disease. CLL usually starts with a clonal population in the bone marrow, SLL with a clonal population in a lymph node or in the spleen. CLL spreads to the lymph nodes and spleen, and SLL will migrate to other lymph nodes and then into the blood stream and bone marrow. In most cases, CLL more closely resembles other forms of leukemia than lymphoma in early stages and leads to bone marrow suppression earlier than SLL. But some cases of CLL can look like an advanced lymphoma (SLL) in early Rai stage (old rai stages 0-2).

Given all of the subtypes of CLL/SLL and individual variation in their presentation, there is no such thing as a "typical" case of CLL/SLL. I have a lot more confidence that I will get competent treatment from a CLL specialist than a oncology / hematology generalist. CLL specialists are far more likely to follow standards of care, such as the International Workshop Guidelines for Diagnosis and Treatment of CLL. Some general oncology / hematology practices will not treat early rai stage CLL in the presence of b-grade symptoms, which are an indication for treatment per the IW guidelines and per 2 other widely recognized standards-setting organizations.

There is a big CLL support group on facebook in which I participate that members of this forum who are dealing with CLL/SLL might want to check out. It is called "CLL Support Group"

Try Milk Thistle you can get it at WalMart and take 2 in the morning and 2 at night for a couple of weeks and then take 1 in the am and 1 at night...it saved my friends life. He was sent home to die by 6 different Drs...and it also save his nurse from a spot on her breast...it cleanses the blood...

It can't hurt anyway...or you can ask your Dr if it's ok first ...

Hi @usacoffeehealth, I did a bit of research into Milk Thistle to find evidence-based information to the claims of its effectiveness in cancer and cleansing the blood.

According to this article by Mayo Clinic https://www.mayoclinic.org/drugs-supplements-milk-thistle/art-20362885
"One of the active ingredients in milk thistle is silymarin, which is extracted from the plant's seeds. Silymarin is a flavonoid believed to have antioxidant properties.
Research on milk thistle use for specific conditions shows:
- Diabetes. Milk thistle might lower blood sugar in people who have type 2 diabetes.
- Indigestion (dyspepsia). Milk thistle, in combination with other supplements, might improve the symptoms of indigestion.
- Liver disease. Research on the effects of milk thistle on liver disease, such as cirrhosis and hepatitis C, has shown mixed results."

Probing further for evidence related to cancer, I found this information:
- National Center for Complementary and Integrative Health (NCCIH) https://nccih.nih.gov/health/milkthistle
- National Cancer Institute (NCI) https://www.cancer.gov/about-cancer/treatment/cam/patient/milk-thistle-pdq
It appears that Milk Thistle has the most promise in disease and side effect involving the liver. It has a long history of use as a complementary and alternative therapy, especially for liver ailments. However, to date, only small studies have been done to look at its effectiveness in treating cancer or reducing the side effects of cancer treatment https://www.cancer.gov/about-cancer/treatment/cam/patient/milk-thistle-pdq#link/_9

As you rightly mention, it is important to talk with one's oncologist when considering complementary medicine's.

Warning: I present the information below without citing any authority and it should not be considered authoritative, although I am sure it is fairly accurate.

Diagnostic criteria for CLL and SLL per International Workshop guidelines changed almost a decade ago with updates in 2007 or 2008. An absolute lymphocyte count of 5,000 per micro-liter was the cut-off between CLL and SLL or monoclonal lymphocytosis. If above 5K at time of diagnosis it was CLL. If below 5K it was SLL (with adenopathy) or monoclonal lymphocytosis (without adenopathy). The term adenopathy refers to enlarged lymph nodes or spleen. Now the threshold for CLL diagnosis is a clonal population of 5K, which is determined by flow cytometry. The absolute lymphocyte count is arrived at with a Complete Blood Count with differential, which is a much cheaper test. The absolute lymphocyte count is the sum of the clonal population plus normal lymphocytes. The threshold has been effectively raised, and fewer newly diagnosed patients will be classified as having CLL, and more will be classified as having SLL or Mono Clonal Lymphocytosis.

SLL is essentially the same malignancy as CLL, but it is staged differently. The Ann Arbor staging system for indolent lymphomas is used. The Ann Arbor system is based on the extent of adenopathy, with stage 1 involving fewer than 3 lymph nodes or clusters above or below the diaphragm. Stage 2 is 3 or more enlarged lymph nodes above or below the diaphragm. Stage 3 more is 3 or more lymph nodes above and below the diaphragm. And stage 4 has the stage 3 criteria plus involvement of the spleen and / or liver. A PET scan is sometimes used to verify the presence of cancer in a lymph node and to select a node for biopsy.

SLL is rarely caught at an early stage, when it is confined to no more than a couple lymph nodes or node clusters. It can usually be cured at that point, much like some other forms of indolent lymphoma when caught very early. You might not have detectable amounts of the cancer in your blood stream in stage one. By stage 3 or 4 it is likely going to be detectable in the blood stream and probably getting established in the bone marrow. If there are grade B symptoms, the letter B is added to the number. B grade symptoms include frequent infection, mouth sores and drenching night sweats. So a stage 3 with B-grade symptoms would be stage 3B. The presence of B grade symptoms is an indication for treatment, and the goal of treatment is to eliminate the B grade symptoms. Stage 4 SLL isn't necessarily treated unless there are b-grade symptoms.

In SLL, a malignant B lymphocyte arrives at a germinal site in a lymph node (perhaps other clones were destroyed in the bone marrow and blood or it simply didn't start clonal reproduction until it arrived at a germinal site outside of the bone marrow.) It is also hypothesized that genetic defects characteristic of CLL do occur after the cell has arrived at a germinal site outside of the bone marrow.

In CLL, the clonal population is established in the marrow of a bone, gets into the blood stream and spreads to other bones and to lymph nodes, spleen, liver and just about anywhere the blood will carry it. Lymphocytes are produced by Pleuripotent Hemopoetic stem cells which produce all types of bloods cells: red, white and platelets. CLL is not caused by stem cells churning out viable CLL cells. The stem cells sometimes push out cells that have defects or acquire defects that characterize a CLL/SLL cell. CLL almost always starts out with a single cell that the immune system fails to destroy and fails to keep in check forever. For every person who develops CLL or SLL, there are probably ten persons who have CLL/SLL cells and are never diagnosed with CLL/SLL.

CLL in rai stage 2 can involve the same degree of adenopathy as stage 4 SLL. Of those diagnosed with CLL stage 0,1 or 2, about 10% to 15% have B grade symptoms before they advance to stage 3. Ordinarily CLL is not treated before old Rai stage 3 except when b-grade symptoms are present. The original or old Rai staging went from stages zero to 4 and is still widely used in the US. The new Rai staging system is about the same as the Binet, which is used more in Europe, with stages 1, 2 and 3; early, middle and late stage. The goal of treatment of CLL with B grade symptoms is the same as SLL with B grade symptoms: to eliminate or reduce the symptoms to below b-grade thresholds.

Current treatment protocols are still based on risk / benefit analysis of traditional chemotherapy. Chemo agents such as Chlorambucil, Bendamustine, Fludaribine, and Cyclophosfomide, are less effective and more toxic than some of the targeted treatments that are commercially available. Generally, chemo given early does more harm than good. Until a short term regime is developed that cures CLL/SLL, there isn't much point to treating someone who has no symptoms. But current treatment criteria may be too restrictive given treatment options that are much less toxic than standard chemo. The next step for clinical trials is to determine if there is a benefit to treating when symptoms are present but do not yet meet b-grade criteria or when blood chemistries suggest CLL/SLL will soon progress to the point where treatment will be indicated under current guidelines.

Cost of the newer treatment options is a reason that chemotherapy is favored for some patients. Moreover, the combination of Benamustine and Rituximab and Fludaribine, Cyclophosphomide and Rituxin have produced deep and long lasting remissions in many patients. On the other hand, Ibrutinib and Veneticlax are given indefinitely as single agents. There are clinical trials underway to find out if a combination of these newer agents can be administered on a short term basis and, like standard chemo plus rituxan, produce deep, long-lasting remissions. Short term combinations of newer agents could reduce overall costs of treatment compared to a single agent given indefinitely. It is to be hoped that eventually the cost of the new wonder drugs will come down and will not be so much a factor limiting access.

Has anyone experienced low hemoglobin and platlet count? I have been told I can not change my platelet count but possibly can change my hemoglobin with adding certain foods to my diet. I go back for lab work in 4weeks. My wbc is 41,000 as of now, went down from my last visit. Curious

I was diagnosed with CLL when I was 68 and was kept under surveillance until last year when my spleen had grown substantially. I decided then to have treatment which was chemotherapy with the same drugs mentioned once a month for four months. I had no side effects of any kind during treatment and was able to have my normal life. I’m now 80 and in excellent health. Hope it helps.

Thanks so much for the update, @nellieblue. It always helps to hear from people who have been there.

@ssid, you may wish to view this discussion, https://connect.mayoclinic.org/discussion/i-have-had-cll-for-12-years-without-need-for-treatment-now/ where @eliejose @69holding @bjsdancer and others have written about low hemoglobin and platelet count. Have you asked your doctor about iron infusions?