CLL

Hi,

Hi,

I was diagnosed back in 1996 (age 46) at Stage 0.  I have been watch and wait every since. My (bad) counts at their highest have been 40,000+ and they go up and down.  My counts at last check were 18,000. It is the % of lymphocytes you want to watch along with if you’re other critical counts staying good. CLL is very individualistic to the person who has it. If you don’t become severely symptomatic and or have symptoms that impact your quality of health, then it is a wait and sees disease and you would not want to force treatment.  They are learning new things every day. (Be sure if you are getting vaccinated for anything that you ask if it is a live virus -  CLL’ers should not have a live virus vaccination)

 I remember being shocked at finding out I had CLL and I did tons of research. Also the first thing I did was get a very good oncologist. (I am now on my 4^th one)  I am pretty much symptom free but at times have fatigue. I do take very good care of my health and immune system. My career for awhile had me traveling international to countries where you want to be sure you prepare for taking care of your health.  At the time I was diagnosed, I remember a nurse saying it was a 20 year wait and see; well I am at 17 years. I also remember them saying that it opens the door for other cancers to take hold. In 2009 I was diagnosed with breast cancer and did a round of radiation.  I am going on 4 years cancer free of that type of cancer. I watch my skin closely and listen to my body signals. If I hadn’t listened to my body signals, I wouldn’t have caught the breast cancer when I did. Docs could not find it until I insisted on more testing.   I am aware I have CLL but CLL does not have me. I enjoy my life and I don’t focus on having cancer but focus on being a cancer survivor. 

kbelle

tscadron said:

Newly diagnosed: does exercise help?

I was diagnosed with stage 1 CLL on May 1, 2013, at the age of 50, and am still trying to wrap my head around it.  I've had weepy days, and days with a lot of bravado, but over the past month, not a single day that I haven't thought about CLL and what it could mean to me.  I've been a fanatical runner for the past few years, running about 6-8 marathons or ultras a year, and much of my social life is built around that.  The thought of losing that is depressing me to no end.  My oncologist has me on "watch and wait," and told me there's no reason to change anything in my lifestyle for now.  Does anyone have thoughts on whether regular exercise helps with this thing?  I already plan to move to a more green-based diet, perhaps cut out red meat entirely, and get down to my ideal weight.  i just need to know that stellar health habits will be useful to me in some way.  Any advice from people who have been living with CLL would be most welcome.  I do feel kind of isolated because I don't want to unload on my husband every day, or other friends or running buddies. 

I found out that I had CLL at the age  of 42 in 2005. Do not worry about what you have no control over it will just eat you up. Keep positive Do what ever you like. Keep up with your Running. It can only help. I was at a seminar  held by the UW  Hospital Carbone Cancer Center and they stressed exercise. There are  aalot of people that do not have issues for 20 or 25 years.I have had Chemo in 2009 and lost 18 inches of my colon from  another illness I had. Was good fo 18 months and got sick again. Then had I mmunotherapy every 3 to 4 months for a year. Then I had a Stem cell transplant. That did nothing for me and then 3 rounds of Lymphocyte cells. That did nothing Now I am back to Immunotherapy that I finshed up May 31st IT IS NOT THAT BAD. Some time I will get another stem cell or bone marrow transplant. They have not given me a time on that. I just booked 5 musky fishing trips  for the next 5 months. I  am not letting it get to me. I have my days where I think about it  but then I just say stick it CLL.

kbelle said:

CLL and my history

Hi,

Hi,

I was diagnosed back in 1996 (age 46) at Stage 0.  I have been watch and wait every since. My (bad) counts at their highest have been 40,000+ and they go up and down.  My counts at last check were 18,000. It is the % of lymphocytes you want to watch along with if you’re other critical counts staying good. CLL is very individualistic to the person who has it. If you don’t become severely symptomatic and or have symptoms that impact your quality of health, then it is a wait and sees disease and you would not want to force treatment.  They are learning new things every day. (Be sure if you are getting vaccinated for anything that you ask if it is a live virus -  CLL’ers should not have a live virus vaccination)

 I remember being shocked at finding out I had CLL and I did tons of research. Also the first thing I did was get a very good oncologist. (I am now on my 4^th one)  I am pretty much symptom free but at times have fatigue. I do take very good care of my health and immune system. My career for awhile had me traveling international to countries where you want to be sure you prepare for taking care of your health.  At the time I was diagnosed, I remember a nurse saying it was a 20 year wait and see; well I am at 17 years. I also remember them saying that it opens the door for other cancers to take hold. In 2009 I was diagnosed with breast cancer and did a round of radiation.  I am going on 4 years cancer free of that type of cancer. I watch my skin closely and listen to my body signals. If I hadn’t listened to my body signals, I wouldn’t have caught the breast cancer when I did. Docs could not find it until I insisted on more testing.   I am aware I have CLL but CLL does not have me. I enjoy my life and I don’t focus on having cancer but focus on being a cancer survivor. 

kbelle

Love your post! Thank you!

nharmon said:

I am 62, diagnosed 11 years ago with white count at 31k

Did nothing for first 5 years, then in 2006, doc put me on a pill called leukeran - this brought the white count down from near 80k to 20k  - acceptable and without side effects.  Then pill stopped working in 2011, lymph nodes very enlarged, spleen enlarged, white count month by month higher to over 100k, where end of 2011, I had to forget the pill and go on the standard 1st line defense with the 3 chemo drugs -
Cytoxan and Fludarabine and Rituxan  (commonly called CFR).  Before the chemo I felt like crap - light headed, weak, muscle pain,
severe fatigue etc - like the flu without the cough or nose congestion.  The chemo was not bad - 3 days at the end of the month
for 4 months ( 4 cycles as it is called)  Wednesday for 2 hours cause the rituxan is a larger bag takes longer to drip, while other 2 drugs drip in 30 minutes, Thursday only for the 30 minutes for the 2 drugs to drip simultaneously and Friday same thing - only got the rituxan on wednesday -  all at my docs office in a recliner -  Come back in 4 weeks, do it again ---Each 3 day treatment cost $5000 where my insurance paid about $4000.

I think there are places you could go if you don't have insurance and prove you need assistance.
Had to sleep much of the week-end each time cause it does make you real tired.

Right away, after the first 3 day treatment,  it immediately worked -  did the next 3 months so it would continue to work and hopefully put it in remission for at least a few years before you need it again - Mine only worked for a year -
Now 13 months since chemo its all back and lymph nodes glands are even larger! The glands all around my neck were becoming so 
enlarged that 6 months after chemo, in summer of 2012,  had to low dose radiation all around neck to shrink them. 10 days of radiation on neck was hell - lost taste, lost saliva - took 3 months for taste to come back - could only eat mostly soups and wet food till saliva started to come back recently - 6 months later.
Doc wants to do chemo again and mix in a different drug to try to shrink the swollen glands even more cause the first time they didn't shrink enough - but blood was great till now 13 months later-
SO...   feeling like crap, and trying to stall chemo again,  I found APRICOT SEEDS.  Look them up on google. You can get them
from many places about $30 for a 1lb bag - lasts me about a month.  I chew 10 at a time, about 5 times per day  -  about 50
seeds total daily(have to be careful not to overdo it cause too much can cause cynanide poisoning - like 100 per day).I had to work my way up to 50 per day cause they are real bitter and too much - too quick can give me a headace -
Anyway,  since new years,  now about 6 weeks,  my glands have shrunk dramatically,  my white count is coming down
I'll know when I get to my next doc appoinment Feb 25 for sure,   but I feel a whole lot better and can probably put off the chemo.
We'll see what the doc says after I get a blood reading.  I'm surprised no one else is talking about apricot seeds.

They also say that an Indian spice called curcummin  (readily available in any health food store and most grocery stores,
along with green tea extract (drops of green tea concentrate put in water is like 100's of cups of real green brewed tea)
I would drink about a gallon of this green tea water all day,  then at night take capsules of curcummin -  It probably would have worked but the curcummin gave me severe stomach cramps - I have mild gaul stones and if you do, you can't take curcummin.
This is published in American medical school journals as being very effective in specifically fighting CLL.
I'm surprised no one talks about this either - strange.  I'm sticking with the apricot seeds and hoping for the best.

 

 

Dear Nharmon...

Check out Cat's Claw (uncara tomatosa) and graviolal...also, peperine helps the absorption or turmeric by 2000%...

It all depends on what you're starting with. My initial 6 months went fairly well with mild side affects. Should be fine.

Lyndawithay said:

Hi I'm Phil, this is my wife's account, but she doesn't use it. She had CLL stage three found in December 2004. Started chemo one day after bone marrow test to confirmed that it was CLL. (Yes you can get results that fast if your oncologist wants it) . She had 5 rounds of Rituxan, Fludarabine, and Cytoxan (spelling) - the last round was 1/2 strength due to low blood numbers. At first she had all the expected side affects, but the doc added many pills and after the second round she had no side effects but a lot of extra pills to take. The Rituxan goes after the CD20 marker. She did not have CD38 or Zap70. If you have those then the treatment is harder. She is in REMISSION since may 2005. However they found that she also has non small cell lung cancer (NSCLC) for which she had 4 rounds of another chemo and is also in REMISSION for that. The doc is not even checking for the CLL - no bone marrow test - since the NSCLC is much worse. He has told us that the CLL will probably come back but it has been a year now and nothing has showed up. The NSCLC will also come back but so far she is in remission for about 3 months. It took 6mo for her blood to get back to near normal after the CLL chemo, but that was when the NSCLC chemo started and that sent it back down. She still gets shots every two weeks to build up her blood numbers. Do a search on the three chemo drugs I mentioned and you will find out a lot about CLL. ***** PHIL

Hi Phil,

Tks. for your thorough reply with info. for future stage interventions.

I'm newly diagnoses with B CLL (not advanced);

I really do dread the interventions re. side affects,

I am encouraged that meds. can alleviate the

damage from those interventions.

I'm sorry your wife had this disease.

My wife died from emphazema 2010.

My best to you,

Jim