CLL diagnosis and diet: was Diagnosed... - CLL America Support

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CLL diagnosis and diet

goodtimesman profile image
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was Diagnosed with CLL a day after my 60th birthday party. I hadn't been feeling well for months. I was diagnosed with pneumonia, sinus infection, stomach infection, plugged up ears, I thought I had an ulcer too. I was fatigued, I had night sweats, blistered lips, horrible stomach pains and finally after they thought I had a heart attack they discovered the real problem of CLL. I have a growth in my lung and colon and stomach issues. 10 days ago I couldn't sleep, couldn't breath was nauseated and was soaking my night shirts in sweat. According to the American Cancer Society CLL is not curable and there are no diet reccomendations that will help. I'm waiting on some high tech blood tests to see if I have my chromosomes in tact without the deletion of P17 and other markers along with how fast it is spreading. It is unbelievable that the doctors and American cancer society only promote chemo, radiation and radical stem cell transplants. I don't know how long I'll be around or how well I will fight this but I do know one thing. Changing my diet radically cured almost all of my symptoms in two days and my stomach in 4 days and have felt great for over a week now. If you do some research you will see the symptoms for CLL are basically the exact same as anemia. They should be since leukemia is beating down your red blood cells and they are half the size and depleted of the nutrition they need to transport blood and other functions. I accidently cured my anemia with my diet. I have no idea what it did to my white blood cells but I feel human again and I'm spending quality time with my family now. Talk to your nutritionist about a diet to fight anemia and see what happens. If you are like me it will bring you back to life with more energy than I've had in a long time. I'm eatting all organic superfoods now and I believe all of the Kale, spinach, broccoli and other foods loaded with b vitamins and iron have amazingly healed me against the anemia. I'm no doctor but I can tell you it really worked for me. I went from feeling like I was dying to feeling very good in no time. I wanted to share this. What do you have to lose by eatting healthy this way. Better than nuking yourself with toxic chemo. I may end up having to have chemo but I'm going to delay the chemo as long as I can. If you read the side effects of the chemo's out there when you have CLL it is not good at all. It is more than just your typical side effects. Read those too before you deside on your chemo treatment if needed. Too bad Western medicine doesn't focus on healing your immune system instead of killing all of your cells and hoping the cancer doesn't return after they destroyed your immune system.

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Carrot_Top profile image
Carrot_Top

When I was diagnosed, I changed to a plant-based vegan diet. I don't have any symptoms since I'm early in the W&W, so it is hard to know if it is helping other than my numbers have been stable. So, sometimes it is hard to stick to this diet. Your post is encouraging me to stick to it! Thanks!

goodtimesman profile image
goodtimesman in reply to Carrot_Top

Thank you. I'm eating a lot of dark green veggies to supply lots of B vitamins and iron to fight my anemia and I feel good. If you are not taking green tea extract it has shown a lot of promise in clinical trials. The Mayo clinic lists it as the only non chemo CLL treatment on their website and believe it or not the American Cancer Society even gives it some credit. So for an alternative healthy additive you might try it. It comes in tablet or liquid form and you can get it at GNC and other outlets. As far as my diet goes it is pretty long and consists of 80% veggies. I use a vitamix for lots of healthy smoothies which include veggies. I've got a nice juicer for awesome juice blends. I save the pulp in the juicer and make soup and other dishes with it. All of my stage 4 symptoms have disappeared except for my burning lips. But they are the only thing left and getting better daily. Aloha

Carrot_Top profile image
Carrot_Top in reply to goodtimesman

Thanks. Yes, I take a green tea supplement, drink smoothies, and make juices. I've not tried using the pulp for anything, yet. I am on vacation right now, so eating healthily is tough. Especially since my husband does not eat this way and does not want to spend the extra time to find a place I can eat. So, I've had to make some allowances and eat seafood or vegetarian.

I just noticed you signed off with 'Aloha'. I'm in Oahu on vacation!

goodtimesman profile image
goodtimesman in reply to Carrot_Top

Hi, I live over on the Big Island.(Volcano's). I'm feeling better every day and my last symptom is all but gone (Painful blistered lips) My wife has been awesome and although when we got married she was a junk food junky she is helping me juice and cook and eating the same as me. She is feeling great. I eat fish for dinner 5 days per week. Keep up your healthy diet. I went from stage 4 to feeling great. Just 15 days ago I was stage 4. It is like a miracle really. When I changed my diet and put it in my mind I would beat it everything started to change. I read last night that the dark green veggies like Kale not only add the B vitamins and Iron but they also have a lot of oxygen and help balance your PH. Some scientists claim cancer cannot grow in an cell that has the proper oxygen and PH balance. Anyway have a great vacation and thanks for the reply.

234me profile image
234me in reply to goodtimesman

wow, what a miracle from stage 4 to almost being cured in just a few days.

What were your lymphocytes counts? What are your white blood cell count? What did your bone marrow biopsy show?

goodtimesman profile image
goodtimesman in reply to 234me

Well the good news is I feel great, the bad news is my latest test results came back and they are bad. My iron was up in my blood from being low which might explain why I feel good and all the anemia symptoms went away. The bad news is my lymphocite count and white blood cell count is going up although I feel very good. The really bad news is that now I am diagnosed with having a rare form of Mantel Lymphoma and since I have growths in my colon and lung this is not good news at all since that is where Mantel Cell Lymphoma spreads first. My doctor said it is possible to feel very good when things are actually not good at all. It has been a sad day for my wife and me but we will keep fighting and keep this diet that is making me strong. I guess the one positive thing I can say is my white blood cell and Lymphocite cell count only went up 10% in the last 23 days. Before the diet they were going up 3% every day. Aloha

234me profile image
234me in reply to goodtimesman

tks for reply back. Do you mind telling me what the lympo/white blood cell counts were?

Just trying to compare to mine

tks

goodtimesman profile image
goodtimesman in reply to 234me

I'd be glad to share. Since I was just diagnosed I'm learning more every day. Apparently the white blood cells can be very high and you can still feel good and visa versa. I was in the emergency room with an enlarged spleen, enlarged liver, growth in my lung, growth in the colon, bloated painful stomach, shortness of breath, chills and fevers, dizziness, blistered and swollen lips, fatigue and a messed up EKG. My white blood cells were only 32,500 but my Lymphocites were 10x what they should be. As I'm sure you know normally the white blood cells should be 5-10,000. 3 days later my blood cells were at 35,800 and I couldn't sleep and had even more problems, worse nausea, more pain in my stomach. I had another blood test after the first one because I couldn't believe a healthy guy like me could have Leukemia. What my doctors have told me is sometimes you can have stage 4 symptoms with lower whites cells in the 30,000 plus and sometimes you can have higher cell counts and feel good. Even though my latest count is over 38,000 I feel as good as I have in a long time and I really think it is the diet. I just hope the growths in my lung and colon have shrunk or non malignant. I'll also need more tests now and scans for my entire body with the Mantle Cell Lymphoma diagnosis. All the symptoms I had for 3 months are all gone now so that keeps me positive and fighting hard. I would take up a couple more pages to write my entire diet down but it is pretty intense with lots of juicing of lots of different types of organic vegetables. I power swam for 3/4 of a mile in the ocean this morning and lifted weights in the afternoon and I have as much energy as I've had in years. A month ago I would sleep 10 hours and couldn't even get out of bed. I could barely walk to the coffee pot and would drink 4 cups of coffee before I could even get going. I was a mess. Had sinus infections, stomach infections, pneumonia and kept thinking I would get better. I was diagnosed with a possible heart attack and rushed to the emergency room when they finally figured out what was really wrong with me. I'm sure I had leukemia for a long time. At least 9 months, maybe years. I'm 60 years old, have always stayed in good shape. I'm an old Dad and have a 5 year old and 8 month old daughter, a wonderful wife and a lot to live for. So I'm giving it all I've got. Good luck with your fight too. Aloha

234me profile image
234me in reply to goodtimesman

Tks for the reply. I wish you luck in your adventure of this unexpected journey.

I just finished(2 days ago) 6 mths of FCR treatment for stage 4 cll and like you have always ate very well, no junk food, in excellent shape and weight ,never been sick, only ever saw a Dr a few times in my life . So being diagnosed with this was a surprise but I knew something was wrong the last couple of yrs, fatigue etc.

Funny how we can keep going even though we are really ill, that is a fighter attitude . FCR treatment has worked well for me with partial remission and hope for a year or 2/3 before it comes back to effect me. I am 63. The exhaustion is gone but not the fatigue.

I just take the attitude that this is just another part of a journey I must take in this lifetime. I don't like it but it is my destiny I believe and so I make each day count for the coming year/s.

I wish you well.

goodtimesman profile image
goodtimesman in reply to 234me

Thank you so much for your reply. It sounds like we have a lot in common. 25 years in Hawaii and I never went to the doctor. Like you I knew something was wrong. Last Summer I told my wife I didn't understand why I was so fatigued in the morning. Then I thought I had an ulcer. I'm an entertainer in Colorado in the heart of the winter and it was a rough winter. I do a 4 hour show on a lot of nights and it takes a lot of energy. The night before I ended up in the emergency room I had to walk off the stage early as I had nothing left and was very nauseated. Like you I just couldn't believe I could have Leukemia and now mantel cell Lymphoma. What does FCR treatment stand for? I sure wish you the best with your treatments and hope you stay in remission for a long long time. Lots of Aloha..

234me profile image
234me in reply to goodtimesman

cll-nhl.com/2012/09/what-is...

grace2017 profile image
grace2017 in reply to Carrot_Top

Hi My Dad has CLL and I am on this site for help for our family. What kind of Green Tea extract are you taking is it a pill? He can not handle caffeine and I know the research not only Mayo Clinic but, MD Anderson has also done trials of Curcumin it needs to be only the bio-available . People with CLL have a hard time with the absorption. I put my Dad on it as well as Boswella it helps the lungs, sinus ect.

Carrot_Top profile image
Carrot_Top in reply to grace2017

I take LifeExtension Mega Green Tea Extract (Decaffeinated). You can find it on Amazon. For Curcumin, my integrative doctor has me taking Bosmeric-SR, which you can find at Sanjeveni.net. It is independently tested. From reading this site, it looks like other ingredients are part of this to make it bio-available: bosmeric-sr.com. It also includes Boswellia. I hope for the best for you and your dad!

grace2017 profile image
grace2017 in reply to Carrot_Top

Thank you so much!! Thank you for all your information as well. How long have you been taking the green tea and Curcumin?? How has it worked for you?

Carrot_Top profile image
Carrot_Top in reply to grace2017

I've been taking them both for a year. My numbers are stable. I had hoped they would go down. But, they were not horrible to begin with. I think my CLL was found pretty early. My WBC is 17K and I'm 50 years old. I am also trying to do all the healthy living things goodtimesman talks about, but I'm definitely not perfect. I'm reading N of 1 right now about Glenn Sabin who is now CLL free. He was diagnosed at age 28 and had to have his spleen removed at that time.

grace2017 profile image
grace2017 in reply to Carrot_Top

Wow. Is he in remission? I am watching Dr. Sunil Pai thank you much. I am learning for my Dad. I believe the good food helps. I read Kale was one of the best things to help anemia for natural iron.

Carrot_Top profile image
Carrot_Top in reply to grace2017

He was actually cured. He had a bone marrow biopsy that showed no leukemia cells!!

grace2017 profile image
grace2017 in reply to Carrot_Top

Wow! What did they do for treatment how did that happen??

Carrot_Top profile image
Carrot_Top in reply to grace2017

His treatment did not include any drugs nor chemo. He did lots of different things. I recommend reading N of 1 - it is a quick read.

grace2017 profile image
grace2017

I forgot to tell you. My Dad's Oncologist told my Aunt who also has CLL my Dad's sister (they have the same doctor and was diagnosed 1 year apart with CLL) that to make sure to keep her protein up. Plant protein is best too. Thank you talking with me today. Thank you for the great information. I appreciate it very much. I will pray that your numbers will be even better your next check up and that God will be with you always.