Recently Diagnosed

Just recently diagnosed with CLL Stage 1 - not treatment necessary at this time according to oncologist, anyone else using dietary protocol as a treatment? If so, what type of plan are you following, where did you get your information from? Hope to hear from you. Thanks.

Your doctor should supply you with the information you need; if not ask his nurse; do not be shy.

I was diagnosis April 19, 2002 with CLL, stage 4 (which is the last stage). I had four Chemo treatments of Rituxan, Cyclophosphamide & Fludarabine. Currently I receive Rituxan once a quarter. I am not in remission but the nodes have not grown. March 2004 I had surgery -- diagnosis - LE arterial Thrombus & Commonilice Atery Stenoris -- large blood clots were removed.
It is very important for you to see your doctor as often as he recommended -- at least every three months. Your immune system could be low & could contact all colds/flu that go around the office and/or family.

Good luck and enjoy each day as it happens

Paula Floyd

I was diagnosed 2 years ago with CLL in stage 0, strange, huh? It was discovered while being diagnosed with something else. I am doing well and, like you, have a strong support system. I am a Christian and have the priviledge of working at a Christian camp.

I have been under the care of Cancer Treatment Centers of America, Zion, IL. I am treated with high doses of vitamins, anti-oxidents, EPA (fish oils +), and CoQ10. I feel better than I have for years and have had no other treatment at this time. I am considering transfering to Dr. Michael Keating, M.D. Anderson Hospital. I do feel that my treatment with nutrition has been beneficial and will not discontinue it under any circumstances. Also, M.D. Anderson is only 1 1/2 hr. from my home. I have to fly to Chicago with CTCA. CTCA advised on my last visit that they might do a little chemo within the year; I guess to clean out my bone marrow or something.

Listen, nobody ever dies one day early or one day late. God is the giver and taker of life and my life has always been in His hands (I'm just more aware of it now). CLL has been somewhat of a gift to me. I no longer delude myself regarding time, strength, ability, etc. I make time for my husband and kids and grandkids and my parents, etc. When I do leave this world, I want to have glorified Jesus Christ as much as possible.

If CTCA was closer, I would probably never consider changing. They are efficient, timely, and so considerate. You also know so many of them are believers. I may wind up staying with CTCA if the appointment with Dr. Keating is not really impressive.

Hope this helps.

Hi Suzanne, I just read your post and I am always pleased to find another Cller that is a Christian.

I was diagnosed with CLL June 18, 2003, and am, as far as I know now, still in watch and wait. I am scheduled to go to Mayo Clinic in Rochester next week for my blood work and CT scan, I will know then if everything is still "poking along" which is, obviously, the goal here.

I had numerous lymph nodes start enlarging on Christmas day last year, and had to go back to Mayo 3 or 4 months earlier than planned, but thankfully, I did not have to have treatment then. I was told to come back in six months then so that they can keep closer tabs. I have my blood checked every 3 months here in Iowa by my regular Dr. and she sends the results to Mayo, that way I don't have to go there all the time.

I have to say that I don't know how people who don't have the Lord manage to get through things like this, I am glad that you know Him too.

I would love to hear from you if you have time.

Sincerely, Margaret D.

Hello-

I was recently looking at your message thread on CLL. I was doing a little research on the disease. I have symptoms of CLL and have been wondering for a little while whether I have it or not. My doctor is a little lacking on doing the things I want him to do test-wise. My point in responding to you is simple. I am curious to know what symptoms, if any at first, made you aware of your disease. I am actually planning very soon on having my doctor do a complete blood cell count test. I'm nervous, but it would help if I could get some kind of input from someone who has already been diagnosed. (I'm usually the type of person that stays away from the doctor as best I can, but right now I'm feeling like there's something seriously wrong- a hunch.) Thanks in advance for the reply.

I just joined the "community" and noticed your message. I guess it was posted quite a while ago now.
I was diagnosed in November 2003 with CLL. The oncologist to whom I was referred at University of Michigan hospital stated I should "watch and wait" with no treatment until Stage 3 or 4, estimated to be 10 years hence. The trouble with western medicine, IMO, is that they only think of treatment, not finding the cause.
I have found a Korean MD (schooled in MO) who understands the need to look for the cause: Dr. Simon Yu in St. Louis (web site: preventionand healing.com). My lymphocyte count started around 11.0 and progressed to 16.0; the trend was then reversed and is presently at 9.6...and trending downward.
My advice is to NOT trust the traditional medical doctors. They are brilliant, I assume, in their own way but totally ignorant of causal based cures.

My CLL was suspected by my physicians assistant. I had gone in for my yearly pap test and she asked me how I had been feeling. Lynn (the P.A.) had thankfully, read my chart before my visit. She had noticed that I had been treated for sinus infections on a number of occasions. She had asked how I had been feeling. I mentioned I had no energy and had been very tired. Also, I had been sick often...colds, sinus problems, coughing and the general run down, all-over achey feeling. She had noticed that my white count was elevated on my previous visit for sinus infection and decided that it would be a good thing to re-check. All though I didn't like the news of having CLL I am grateful that I found out what was causing my lack of energy. If your doctor is reluctant to do a simple CBC (complete blood count) I'd be looking for a new doctor.
Good luck to you
stay well
julie

I am replying to your questions on cll. I had swollen Lymph nodes in my neck and face last April 2004, went to Dr. very high white blood cell count. I was exhausted, then they did a chest x-ray which showed something, after investigation and biopsys if turned out to be lung cancer,and CLL- had surgery in Sept 2004, doing real well had 4 rounds of Taxol and Carbo, waited 3 weeks now just finished 4 rounds or Rituxan for the lymph nodes, which have drastically reduced in size, I am still tired, but rest often and am leaving for Florida on Sunday for about 6 weeks, Need to escape from cancer and snow. I live in Mass. Dr. needs to wait to do CAT scans, let the Rituxan do its thing. Keep a positive outlook and if your not satisfied with a Dr. or clinic go to another one. Do not settle for less than 100% from your Drs. Good luck write me anytime Nancy

I am an American living in Japan on business and was just
diagnosed with CLL Stage 1. In Japan only the elderly get CLL. I
may be the youngest person in Japan with the disease (I am
41). I was planning to go back to the USA and look for a job.
Now insurance is my concern. Here in Japan I am covered by
the government for 70% of the cost of treatment and I have a
modest supplemental policy, but I am not covered 100%. I want
to return to the USA (the doctors here are not familiar with CLL
in younger patients). If I go looking for a job (I have been away
for 14 years now and am unfamiliar with things there now) will
I be asked about my health condition? Can I get coverage from
an employer? Will I need to hide my condition? What do you
think? I feel fine by the way.

Hi Paula! I have been fishing around on the internet all morning because my husband just finished his first go-round of Chemo... the same treatment you had, except he was given a shot of Neulasta on his third day of chemo. How are you feeling now? I hope you are well!

He is in great shape and only 50... had a 100% perfect physical on his 50th birthday in August 2005... then the you-know-what hit the fan on December 13th, 2005. His doctor was taking a "wait and watch" course, but we flew to Stanford for a second opinion and they said to get a move on with the treatment, so we did.

I was wondering... the information about vitamins, minerals, herbs during chemo is very conflicting. Do you have any first-hand advise? Have you heard of AHCC... from Japanese mushrooms... "Active Hexose Correlated Compound" in a capsule? It has recently become available in the US and is getting a huge amount of press as one of the safeset and most powerful immune-boosters ever tested on patients fighting breast, liver, prostate, ovarian, and leukemia cancers.

Thanks for your input, and all my best to you.

Cindi