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Yesterday was a good day……….
Today is a great day and…………
Tomorrow WILL BE BETTER!
This page has been dedicated almost solely to Tom’s diagnosis of CLL because, when I first started, I was only blogging about “Living With CLL”. Then it dawned on me that all the information on this website should be able to help with all forms of cancer as well as many other illnesses.
My name is Jean, 75. My husband Tom, 77, is a three-time cancer fighter and survivor. His first bout with cancer was in 2008 when he was diagnosed with Prostate cancer. When he came home and told me, it was just too much for our brains to process. You ask yourself “Why me? I don’t smoke, I don’t drink, I eat healthy (or so we thought)!” After getting opinions from several Oncologists, he decided to have the seed implants instead of having the Prostate surgically removed. It took time to heal but no invasive treatment was necessary (no chemo or radiation). Fortunately, he was diagnosed at the early stage of the cancer and fully recovered from it. {In 2008 I didn’t know anything about the information I NOW have on my website. I learned this information after Tom was diagnosed with CLL in 2010. This time he had a very helpful nutritionist and an informative Oncologist. From them we learned what Tom should and should not eat, what type of all natural medications, vitamins and minerals to take and so much more. (In 2008 we were told nothing except to go home and heal. If I had known THEN what I know NOW, maybe Tom wouldn’t have CLL}.
In June 2010, during his quarterly doctor visit, the blood work up results showed Tom’s white blood cell level was elevated indicating he may have cancer again. Our primary doctor told Tom to go to his Oncologist. The next day he had an appointment. After another blood work, the results were in. His Oncologist checked to see if Toms liver, spleen or lymph nodes were larger than normal. The Oncologist told Tom those three things were normal but his blood workup showed he had Stage ‘0’ CLL (Chronic Lymphocytic Leukemia or Chronic Lymphatic Leukemia). CLL causes a slow increase in white blood cells (B lymphosytes or B cells). These cancer cells spread through the blood and bone marrow and can enlarge the lymph nodes, liver and spleen. CLL eventually causes the bone marrow to fail. (2) CLL has 5 stages (or extents): 0 – 4. There is no treatment for Stage ‘0’ CLL. It’s a game of wait and see. In Stage ‘0’ the Leukemia cells function almost normally and CLL symptoms may not appear for a long time. In stages 1 – 4, CLL treatment may include: waiting, monoclonal antibody therapy, chemotherapy, low-dose radiation therapy or a combination of treatments. (1) There is no cure for CLL but since Tom is in Stage ‘0’ he was told by his Oncologist that he could live for many years with CLL without ever having any invasive treatment. Fortunately, again, he caught it in time. There was also a warning. Even type “0” CLL can weaken his immune system making Tom more susceptible to skin cancer (melanoma’s) and other illnesses. In March 2012 Tom had a melanoma removed from his arm
UPDATE 9/22/2016- Tom got the results back from his latest blood work up and they are great. His Oncologist is as happy as we are. There were no changes in this new work up. The results were the same as the one he had done four months ago. Plus, the work up from four months ago barely showed any changes from the previous one. When he was first diagnosed 10 years ago, we caught it early….stage 0. He is now only entering stage 2. Tom’s liver, spleen and lymph nodes are still perfectly normal. The Oncologist told Tom, “I don’t know what you’re doing, but keep doing it”. All we have been doing is following everything I have on my site, which proves it works.
UPDATE (7/1/18)- Tom is still only beginning Stage 2. His white count has gotten higher but his liver, spleen and lymph nodes are still normal. We are still “wait and see”.
UPDATE (6/2019)- We got a real scare today. Even though Toms CLL is still in stage 2 and his lymphosytes hadn’t gotten any higher, his anemia was so bad the Dr was afraid he wouldn’t make it. Chemo was recommended. (His bone marrow overproduced abnormal lymphocytes. These abnormal lymphocytes crowded out his healthy blood cells, in the bone marrow, that put oxygen in the blood. Tom was given
IV chemo medications meant for his type of CLL. The treatment killed off the lymphocytes making more room for normal healthy white blood cells. The lymphosytes jumped to 300,000, which is very high. After 4 IV treatments his count was back to 5,700 which was perfect. The first treatment was the hardest. He was given almost double the medication to “kick the lymphocytes in their butt”. It did the job. He was just extremely tired for a couple of days but, by the third day, you would never know he had a treatment. The following week he went in for his next treatment. The blood test showed the first treatment worked. His lymphocyte count dropped dramatically. He only had to have 4 treatments because, with each treatment, the lymphocyte count was lower & lower. He never threw up, still ate and was up and moving the next day except after the first treatment. His Oncologist told Tom that he wished all his patients responded to treatment as well as he did. There is no cure for CLL. He will have to live with it for the rest of his life but, keeping him on his restricted diet and taking the all-natural vitamins and minerals has worked. His anemia has improved a lot.
UPDATE (February 2022)- Tom went in for his quarterly Oncologist appointment and discovered his lymphosytes had gotten high again. They went from 5,700 to 90,000. He’s still in Stage 2 though. There are still no swollen lymph nodes in his liver, kidney or spleen. He was put on Imbruvica which treats CLL in a different way than ordinary cancer treatments. In April he went in each week for a blood test. At his last appointment the lymphosytes had gone from 90,000 to 25,000.
Symptoms of CLL are usually mild at first and progress gradually over time. Many cases are detected by blood tests done for other reasons (like in Tom’s case). Tom had no physical or painful symptoms. Just the white cell count being higher than normal. This is why you need to see your doctor regularly.
Symptoms of CLL may include one or more of the following:
abnormal bruising,
excessive sweating or night sweats,
fatigue,
fever,
chills,
infections that keep coming back,
loss of appetite or becoming full too quickly, (2)
painless swelling of the lymph nodes in the neck, underarm, stomach or groin, pain or fullness below the ribs or weight loss for no known reason (1)
chest and/or *throat congestion (causing coughing) that won’t go away.
(These symptoms are often present in a variety of other cancers and illnesses so, make sure to see your doctor regularly).
Toms symptoms include night sweats, chills, fatigue, bruising and *throat congestion. (like an Upper Respiratory Infection that refuses to go away.) {*Tom was told by our friend that works at VDC that he should try organic Oregano tea for his congestion. Since he couldn’t shake the congestion and nothing we tried was working, we figured, “why not??” So, that night, he made a cup of Oregano tea and for the first time in months, he woke up the following morning with no congestion. It really works}.
As soon as I learned of Tom’s diagnosis, I was on the computer googling everything I could about CLL, (like, what type of cancer it was as I had never heard of it before). I didn’t have time to be scared or upset. It may sound awful, but I didn’t allow myself to feel sorry for him and I never allowed him to feel sorry for himself. We ALWAYS keep a POSITIVE attitude. Even though he was diagnosed nine years ago, I am still on the computer getting any updates and putting this new information on my website. I love google. There is a never-ending supply of information for you to read and learn from.
I realize that everything I read is “that persons’ opinion” whether it be a doctor or a non-professional like myself, but from those opinions you can still learn.
After the diagnosis, Tom talked to his Oncologist and Nutritionist to find out what the next step was. The next step was HUGE. Tom was put on a VERY strict diet (or a change in eating habits as we call it). It is actually easier to tell you what he IS allowed to eat than what he isn’t allowed to eat.
As I stated before, these are MY THOUGHTS, IDEAS, VIEWPOINTS and OPINIONS. ALWAYS consult your Oncologist before making any changes to your diet. I believe all the information on this website has helped keep Tom’s cancer from getting worse.
(1) www.leukemia.emedtv.com
(2) www.health.nytimes.com
“ALWAYS STAY POSITIVE”
I heard a Chinese proverb by Confucius that I had to share. “Don’t be afraid of going slow………..Just be afraid of stopping“. It loosely translates to……..NEVER GIVE UP. No matter how long or hard the fight is…………………Never lose hope!! NEVER GIVE UP!!