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CLL

teributterfly
Posts: 5
Joined: Aug 2006

I am starting Chemo, for CLL soon would like to get feedback, on what to expect

Lyndawithay
Posts: 14
Joined: Mar 2005

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

vineyardtechie's picture
vineyardtechie
Posts: 1
Joined: Jan 2014

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

library1j
Posts: 6
Joined: Jun 2007

I just signed in for the first time, trying to find someone else with CLL. I was diagnosed in December 2006. I was just wondering how you are doing and how your chemo treatments went?

daisybob
Posts: 1
Joined: Jul 2007

Hey library1j,
This is also my first time on this site. I was diagnosed in Jan. 2006. I'm still at a stage 1 and in the watch and wait. Its so hard to wait, I personally feel that it should be attacked while it is small and I might have a better chance. Does anyone out there know of any clinical trials right now for stage one. I do have enlarged lymph glands, tire easily, but white counts are still under 20,000. Anyway would like ot her from others, at times you feel all alone.

60Patrick's picture
60Patrick
Posts: 6
Joined: Jul 2007

Dear Daisybob: a good site for current developments or clinical trial resources is "CLL Topics" which can be googled. Stage one is like the calm before the storm. I wish the doctors would spell out more clearly what we watch and wait for, and what will then be done, so we had a definite image in our heads instead of, as in my case, a sort of a foggy field in evening twilight. My count is not as high as yours, but we're on the same track.

SandeeG
Posts: 2
Joined: Apr 2009

Hi. I'm new to the site. I have Stage 1 CLL and just last week found out that my count has gone to 20,000 from 12,000 just last July when I was diagnosed. I just want to meet people who are in the same boat as I am and feel like I am not alone. I've kind of given up hope that I will live very long and need help getting past that. From what I read, I will be lucky to live 15 years and I am only 48. Any reply would be appreciated.

virginiapi
Posts: 1
Joined: Jun 2009

Hi, SandeeG. I was diagnosed with CLL in 2002. Still in watch-and-wait. Have no symptoms except elevated WBC. My WBC has been running around 60,000 (with one spike to 80,000 due to a severe bladder infection a couple of years ago). However, my test last week showed a jump to 110,000 (in 3-weeks). My oncologist wants to hold off and test again in two months - then look at treatment possibilites if it's still going up. I know what you are going through, and I want to tell you to hang in there. You are not alone. Statistics are scary, but a large number of patients never need treatment at all. Just a couple of things: Make sure you have a doctor whom you trust completely. Even then, you should get a second opinion. My doctor encouraged this, and even set it up for me. The doctors at Duke Medical Center were in complete agreement with my doctor after extensive examinations there, which makes me feel that I am getting the right care (this matters A LOT!). I'm not a doctor, but I'm in your corner. If I can help you in any way please call on me.

tf168wife
Posts: 21
Joined: Mar 2009

Hi Virginiapi! Just wondering how you are feeling? You have had CLL for 7 years and are still symptom-free? Except for the WBC, of course. I was just diagnosed last November, and my WBC is pretty much the same as it was then, however, everything else is changing. The neutrophil to lymphocyte ratio, RBC, platelets, but even my kidney functions - creatinine and potassium are low. Anyway, I'm very tired, and odd things keep happening - like lightheadedness, or pain in my legs. Anyway, just wondering if all of these things are just the normal flow of CLL.
Please let us know how you come out at your next appt, ok?

tf168wife
Posts: 21
Joined: Mar 2009

Sandee - so happy to meet you. I'm Dori, and I have a very similar story. I am also 48 and was diagnosed with CLL last November. I am not in any treatment, as I am fairly symptom free. My WBC count is 24,000, up from 19,000 in November, so I think that is pretty good. So when were you diagnosed? How do you feel? Please don't give up hope - talk to me.

gonegolfing
Posts: 2
Joined: Oct 2011

Was diagnosed Oct 2009 white cells were 16000,in Oct 2011 white cell at 51000 doc.said I would start chemo at 70000 since I have no other symptoms I went to another doc for another opinion doc said there are other factors to consider blood platelets very important also my point is to be proactive and find out as much info as possible.I am 68 and am wishing you many blessings.

sdeangelo
Posts: 2
Joined: Apr 2012

I was diagnosed at the age of 47. Now, 3yrs later I'm at stage 3 with WBC at 76K and anemia. I had a bone marrow test last summer which confirmed the CLL but was inconclusive about other things going on with my red blood cells. I feel pretty good overall however, I do get tired a lot. I have a feeling that some kind of treatment is around the corner and I'm feeling very apprehensive about it. Does anyone have any advice for me?

flyinglark
Posts: 1
Joined: Aug 2012

i was diagnoed in august 2012 and i go in next month for my next blood test. my doctor said not to worry but nonsense. wish you nothing but the best

jluke
Posts: 2
Joined: Nov 2013

Hi SandeeG..

I have had CLL for over 10 years now.  I was diagnosed with it during a routine physical, and was told by the doctors (I have visited several) that this was a "wait and see" condition.  My counts were diagnosed at around 9500, and began climbing fairly rapidly.  I was getting some extremely painful joint and muscle pain, and at one time figured that I was going to die in extreme pain.  I am not a wait and see kind of person, so I did thousands of hours of research over the past 10 years and tried many botanicals that might help apoptosis, and it seemed like it was slowing it down, but I hit about 34,000 (stage II) and couldn't control the pain attacks anymore.  Nothing seemed to help, until one day, one last try, I came by a very vague article about "uncara tomatosa" or commonly called "Cat's Claw".  I resolved to try one more time.  MIRACLE!!  Cat's Claw immediately brought the joint and soft tissue attacks under control.  Further research discovered Graviola, which is known to be a cancer killer.  With the combination of the two, I was actually able to push the CLL back into stage 1 at 22,000, with almost no pain.  My doctor believes it is good for his patients to pursue combatting the disease, and has seen others actually push it into remission.  I for one, will continue this struggle as quality of life has increased dramatically, and Cat's Claw and Graviola are about $3 a bottle.  I don't know if this would help you in any way, but I am a firm believer that you have to "own" this disease.

God Speed you on your remission.

Jon

 

60Patrick's picture
60Patrick
Posts: 6
Joined: Jul 2007

Well, I guess this makes 3 of us! I was told by my GP back at Christmas of 2003 that I only had an infection. Then this April the lymphocytes were up again and when my GP sent the results up the ladder the hematologist didn't like the numbers. So much so that my GP called me in class on my cell phone to advise me, much to the caustic amusement of my students of the day(Hey, Sir, no cells in class, eh?!)From there I got referred to the dreaded oncologist. It's the only waiting room where they have juice and cookies and always call you by your first name. The flow cytometry confirmed CLL. The problem is it can have a good or a poor prognosis depending on certain types of chromosome damage; faith on the part of doctors in various tests to determine this vary from time to time and place to place. I'm paying for FISH testing on my own buck to check the chromosomes. My doctor is using "watch and wait", which I can understand. I just want to know more about what we're watching and waiting for! What's your lymphocyte count? Have you had flow cytometry or FISH testing? We may both be a long way from chemo(ugh!). Physically I'm okay. What's hard is telling people close to you that you think should know. They keep crying. Bye the way, have you heard from teributterfly?

library1j
Posts: 6
Joined: Jun 2007

Hi Patrick,
Sorry that your counts are higher. At last check, mine were at 19,000. I also found out that I have a marker called CD38 at 56%. I haven't heard from anyone with CLL that can tell me much about the marker. Have you heard from your FISH testing?

beth51
Posts: 5
Joined: Dec 2007

library1j, there is an excellent article at annals.org (site for Annals of Internal Medicine) that explains everything about early-stage CLL, from diagnosis to prognosis, very thoroughly. I know you will find it very helpful, as I did. Here is the link: http://www.annals.org/cgi/reprint/145/6/435.pdf

library1j
Posts: 6
Joined: Jun 2007

Hi Beth,
Thanks. The site was very helpful. I would still like to hear from someone that has the CD38 marker. Has it caused a quicker progression of the disease? Does anyone out there have a personal experience with it or a realative with it?

60Patrick's picture
60Patrick
Posts: 6
Joined: Jul 2007

I've been out of touch with the site. Sorry about that. All other things equal, a high CD38 increases the chances of a swifter progression of CLL to treatment stage.(http://cll.acor.org/cllfaq/answers/24.html)
Another quote:
True, low CD38 expression was still an indicator of good prognosis, and patients with high CD38 expression typically had more aggressive disease and poorer survival odds. But the two indicators did not track each other exactly, and that was a disappointment.(http://clltopics.org/PI/Type.htm)
I hope this is helpful, and good luck to you all.M y own personal CD38 levels are low; still, you need larger numbers of cases to get patterns.

TimothyCLL
Posts: 1
Joined: Jun 2008

Going with Campath (chemo) for CLL, I caught CMV anyone else?????

library1j
Posts: 6
Joined: Jun 2007

Timothy,
What is CMV?

60Patrick's picture
60Patrick
Posts: 6
Joined: Jul 2007

My FISH results are normal. Of course a #13 deletion would have been good news. However, one might want to read the "FISHing in murky waters" article at the CLL topics website.There is also a big CLL convention in Niagara Falls ON on April 24-26 2009 if you're interested.

toomuchfun
Posts: 1
Joined: Jul 2009

I was told that I have CLL this past Febuary and have gone through 8 chemo treatments so far. The doctor is very happy with the way my blood count is going back to normal. I have read that with this leukemia it will alwys be there is that true. Also due to the cost of my medical insursance, I pay for Cobra now i need to find some place to help cover the cost of this.

tf168wife
Posts: 21
Joined: Mar 2009

HI! I was also recently diagnosed with CLL, although stage 1, so no treatment for me yet. I have also heard that this leukemia cannot be cured, but it can be put into remission. So, we pray for that. It is good therapy, at least for me, to network with others who are going through the same thing. So, hope to hear from you again!

jas1965
Posts: 6
Joined: Jul 2009

Hello all - I am new to the group, but not to the CLL.
Things were good for the last 2 years and now its back.
They are going to put me on a drug call Campath.
Did not know if anyone has heard of this before.
It is one thing to search the web, you can always
find something good about a drug. Its another thing
to speak with someone that has had it.

Thanks in advance

JAS

bkblpp
Posts: 1
Joined: Jun 2009

Hi,

I've had CLL for probably more than 10 years. I see a hematologist/oncologist about every three months or so. Sometimes more often, sometimes less often. I've received chemo maybe about 6 times over the years and and due to be on it again by the end of this year or earlier. I take leukerin which is a pill usually for a couple of months, with checks from the doctor during. So far it has worked and brought down my white count. I have no ill effects from it. Sometimes I take 2 a day, or 1 a day or 1 every other day, whatever the doctor says.

I've also had a melanoma removed about 8 years ago, get checked every year for any reoccurance. I've also had two breast biopsies, but they were only cysts.

It can be scary when you first learn about this, but I am very used to it. Most likely I will not die from it, but from something else. Nevertheless, I need to get checked regularly and eventually may be on a more potent medicine.

I have several other medical problems, the worst being orthopedic. Keep up your courage and be good to yourself.

tf168wife
Posts: 21
Joined: Mar 2009

bkblpp - thank you for the posting. To those of us newly diagnosed, it is a lot to take in. WBC, flow cymetry, FISH, staging, chromozones, etc. it can be alot. And to be honest, I really have to pay attention to what I should and shouldn't....pay attention to! I know symptoms are worse than counts. It is still encouraging to have someone lay things out for you from time to time and I guess personally, I want to know what I am in for!

cooksey23
Posts: 2
Joined: May 2011

In April 2007, I found out I had Prostate cancer. Had the prostate removed in June of 2007.
Clean since. But, when I went for my first blood test after the cancer was removed--my white count started to go up. I found out I had CLL not long after that.No problems until Sept. 2009. I started to have vision problems, more in my left eye than my right. Going through many tests with my eye doctor, we could not figure out the problem. In early Dec. 2009 I found out the white cells attacked the muscles behind my eyes and started to push my eyes outward. Went through 15 treatments of radation to the temples. That solved the problem for about 7 months. After that I started chemo. I have been through four rounds(Dec-Jan-Feb_Mar 2011). The rituxan on my first day would take all the energy from me and I was very tired through the process. I did fine during the first three sessions, just tired.
The fourth session I was not only tired, the nausea came into play. I am four weeks from my last treatment and getting all my energy back. I go through a spinal tap next week to see if the cll is present in the fluid.

I feel the most important thing is a positive mind and your faith. Don't let it stop you from doing anything. No matter what. You are stronger.

A liitle about me, I am 52 years old, I have boy-girl twins that are 6 years old and a grandson that is two. You are stronger.

God Bless
Willie Teague
cooksey23@cox.net

cattycatty
Posts: 1
Joined: Aug 2011

hi all. i am the wife of a 51year old diagnosed yestersday with cll. he is experienceing fatigue early in the day, and has night sweats. i don't know what else to tell you. he has been told he has the short stcik, young adn short prognosis. i guess i am asking what to expect. i want to help him in whatevr way i can, but i dont want to baby him. i am so upset my typng sucks. sorry. i want to help him. and my children 18 and 21.

we have to wait 6 months for the specialist to tell us what stage it is....

anything. anything. thanks.

peachy1
Posts: 1
Joined: Aug 2011

Six month for staging sounds...unusual. Insist on a FISH panel.

My mom was diagnosed stage IV in November 2010...started chemo in May and has one more chemo left to go...her numbers are now normal and she is doing well.

You don't know where he is in this yet...just see where you are and hang on...he may just be in a very early watch and wait and you may not have to do anything to treat this for years...

The first thing you need to do is find a hematologist that is very very familiar with CLL, preferably into research, or find a doctor willing to consult with a CLL expert...perhaps Dr. John Byrd at Ohio State University James Cancer Hospital or for example, another at MD Anderson in Texas ...just throwing those out because I know OSU does consults with other doctors if they request it and they and MD Anderson are two of the big CLL treatment experts/researchers in the country. I am going to give you the number for Ohio State University's James Cancer Center...I get that you may not be close enough to use them but call this number and ask to speak to a nurse on the James Cancer line...tell her your husband's situation and she will answer the basic questions, plus perhaps can help connect you with the very best people in your area. Number is 1-800-293-5066, ask to talk with someone that can give you CLL information and a possible help with a referral...if they don't know of someone, have them call Dr. John Byrd's office at OSU and ask him for a referral for someone in your area. Byrd is one of the top CLL researchers anywhere.

Another place to go to ask questions and be helped with referrals is the LLS (Lymphoma and Leukemia Society)...excellent help here:

1-800-955-4572

Tell them your situation and just talk...they know their stuff and have helped me a time or two in knowing what to expect.

You hang in there. Sending you strength and hoping these resources help.

haposwald
Posts: 2
Joined: Sep 2011

Hello eveyone, I wes diagnosed in 06 will CLL both lukemia and Lymphoma. Stage 4 with a watch and wait treatment plan,btw never made me feel good to watch and wait as I am a pretty aggressive go get them kind of 49 year old husband,father and gradfather. Now five years in I have had spleen enlargement to 14cm with constant stomach pain with increasing intescity daily and edema in both legs. My oncolosgist says it's now time to pull the trigger and start Chemo. I am 6ft 240lb causaion male and honestly wondering what I can expect for Rituxan,Cytoxan chemo thrapy. I don't see my oncologist for 2 months and thats the time I'm starting Chemo. What can I expect,what can I look forward for good and bad.......... any and all would be greatly appreceiated thanks

spazzzz
Posts: 1
Joined: Nov 2012

Hi! I'm at stage 4 and I did 28 weeks of campath chemo. I am waiting on an alergenic stem cell transplant. Well not sure if the chemo will be the same kind for you but it just about took me to be honest. I'm 5'11" and at my max I was 205lbs and took me to 123lbs and I have just gotten back up to 155 lbs. It's been a year now and I am still dealing with it one step at a time. A good supportive and loving team is VERY important. I'm a single man with no family and very few friends and a 2 yr old son. I went from being a healthy "normal" man to not being able to function..walking cleaning working etc just daily occurrences would wear me out for days. Being sick was just awful. Being alone with nobody to talk to or that has ever experienced anything like this made me feel like giving up. Don't give up and make sure you have people behind you to give you that push when you need it. I since have met an amazing woman who has gone through this as her mother and younger brother both passed from this. She helps me push on and encouraged me to come here to speak to others that can somewhat understand what I'm going through.

misujlh
Posts: 4
Joined: Oct 2012

I also have both CLL and follicular Lymphoma how are you doing I found out in march this year 2012 having 2 kinds causes double worry as how do the 2 work together

jhartje
Posts: 2
Joined: Apr 2012

I am a 67 year old male with newly diagnosed CLL and in watchful waiting (Stage 0). Previous experiences with cancer are Melanoma (sucessfully removed) and Prostate (radical excision, clean for 13 years). In both cases, I had immediate options and exercised them, without regret. Now I am being told there's nothing to do. However, I cannot do nothing. I have read that a Mayo Clinc study on Green Tea Extract has shown promise in killing the cancer cells of CLL. I have also read about diet changes to more plant based and I have adopted that wholeheartedly. My queston to CLL survivors is: does anyone have experience with alternatives and what else can I do?

Thanks.

haposwald
Posts: 2
Joined: Sep 2011

My last post did'nt get any replies and since have had my Gall Bladder removed. Feel great besides the fatigue. I have changed diet to a much more greener diet and started taking a bunch of supplements to help stengthen immune system and reduce WBC. My oncologist has stated that CHEMO would start around 200K wbc. I had been hovering around 120K. Now with taking L-arginine,Hemp protein powder,and Zeollite my WBC has been around 19K quite a drop . In the supplement area taking b-12,Coq10,vit C,NK-3,vit D3 and a herbalmedicine Lyphatonic. Still suffering from fatigue and edema in the lower legs, but I feel I have kicked Cancers ASS for the time being and I don't give it much thought just keep moving forward as I as well have kids a wife and a grandson. So to you Jhartje and others looking stay focused and positive and keep your faith close @ hand as I do daily along with the supplements ..............Hap

PS make sure to check with your oncologist as we are all different what I am doing is working for me so I hope that you find something that does the same for you !

mrb
Posts: 4
Joined: Apr 2012

Thank you for the tips and sharing your information. I will start chemo next week. I'm not nearly as informed about my condition as you. I think I will ask for that info at my next meeting. I do know my platelet count is 57 and my spleen is enlarged. 21something was the size. I do have an extra problem that I will share. I was suppose to start chemo 5 weeks ago but it was discovered that I have TB also. It is latent but as soon as the chemo starts, the Tuberculosis will become active and very contagious. I will probably start a thread on this site talking about it. I don't imagine that too many people have this particular problem so I thought I might share (just as you have) incase someone down the road comes up with the same situation. Again, thank you for sharing. I will start looking at a change in my diet now. Mike

jhartje
Posts: 2
Joined: Apr 2012

Thanks, Hap, for your response. It is really great information and I'm really encouraged by the drop in your WBC. While my WBC is still around 15K, I don't want to wait until I start doing something about it. Was your gall bladder removal as a result of the CLL? Are you seeing a naturopath or an integrative oncologist? Did they prescribe the herbals and vitamins you're taking? Or, did you find that combo on your own? As I stated, I've BEATEN cancer twice before. I'm going to beat this one too! Jim

runabe
Posts: 53
Joined: Aug 2009

My name is Abe and i have CLL!!!!!!!!!!!!!!!!!!!!!!!!! Was diagnosed about 8 months ago Swelling in my groin nodes and neck nodes was VERY NOTICABLE Just compleated round 2 of cemo Rutixin ans Bedamustin are the drugs of choise Got a VERY BAD rash from the bedamustin had to have it treated with a skin doctor Could not do rutixin first cemo white blood count was to high 250k+ With first round of kemo knocked white blood count to 3300 Have lost a lot of weight about 17 lbs only weigh now 156 I was not that big to start with
Please get back to me and tell me long time reactions to this cemo I still have 6 more treatments over the next 6 months

Thanks for letting me speak
Abe

walkingspirit33
Posts: 2
Joined: Aug 2012

I have just joined th forum so I am just learning to get around. while in the hospital following a heart attack;I was diagnosied with CLL and also diabetes.All went well for a couple of months until my wbc went way down..so comes 6 treatments of chem..no real side effects,so that was good.I am so far still in remission,and grateful for this.Then in Feb. of this year they diagnosed me as having Myelo fibrosis. This goes up and down .I had to have several units of blood ,as My hemoglobin was critcally low...Since then my rb count started going down but after starting some vitamins it has gone up each of last two tests...due next week to see where i stand...trouble is I am confused....I don't know if one is related to another...and so i feel my life is just in limbo.As many of you know fatique and general malaise make life less fun and hard to have jobs and such..and of course any relationships suffer.I am single and although it is lonely, I do not wish any until I know what lies ahead.But haos is right a positive attitude lies as the foundation of our well being.
All have a grand day,
rob

nharmon
Posts: 2
Joined: Jun 2012

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.

 

 

jluke
Posts: 2
Joined: Nov 2013

Dear Nharmon...

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

Highlander56
Posts: 3
Joined: Aug 2012

I was dignosed with CLL in 09-91. This after two bouts of Hodgkins Lymphoma. In 06-96, the CLL went into remission.

I wish you well,

Regards, Glen

srb1956
Posts: 7
Joined: Sep 2012

I was diagnosed in 1999 stage III. 6 months of chemo...cytoxan, fladuribine, rituxameb...went into remission and have been there ever since. I visit my oncologist once a year for blood work...completely normal so far.

I suggest you look up the latest at MD Anderson. They have a list of eight (I think) cancers they expect to have a cure for within the next several years. CLL is on the list.

kbelle
Posts: 1
Joined: Apr 2013

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 4th 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
Posts: 10
Joined: Jun 2013

KBelle:  Thanks for an extremely useful post that came to me at the right time.  I posted earlier this week, and was nervous because I had my second appointment with my oncologist this week, and planned to ask her all the tough questions that had been mulling around my head making me a basket case over the past month (I was just diagnosed on 5/1/13, at age 50).  She was wonderful, and spent an hour with me answering every question I could think of.  One of the things she said that most resonated with me:  cancer takes away the illusion that we have total control over our lives and health, but it was always only that, an illusion.  That much said, I'm going to do everything I can to be a "smart cancer patient."  It sounds like my CLL might follow the same course as yours, kbelle -- she told me I'm at stage 0, and my WBC is 26,000 with % lymphocyte around 60.  I'm still asymptomatic, no swollen lymph nodes. and my energy level is good.  I'm the "fanatical runner" who posted on Tuesday, and my oncologist assured me that I can run as many marathons as I want.  I have to think exercise will help, at least make me stronger to withstand treatment, when and if I need it.  The biggest changes I contemplate:  I'll be much better about sun screen, and plan to pay more attention to my nutrition, focusing more on whole foods.  Good tip about the live vaccinations.  We travel a lot internationally, and I guess I'll avoid street food in third world countries (which I should have been doing anyway).  And while I'm still strong and healthy, I plan to do a couple marathons through Team in Training, which supports leukemia and lymphoma research.  This isn't a club I ever wanted to join -- noone does, I know -- but you all are inspirational.  I hope to follow your example, kbelle and others who have learned to live with this.  And I'm not going to let CLL define the rest of my life.

Fulloflife02
Posts: 1
Joined: Jul 2013

Love your post! Thank you!

tscadron
Posts: 10
Joined: Jun 2013

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. 

NJA1963's picture
NJA1963
Posts: 2
Joined: Feb 2013

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.

 

sealbeach67
Posts: 4
Joined: Nov 2013

Hello tscadron,

I was diagonsed with CLL in June 2012, at the age of 63. I exercise and eat pretty well. I was totally shocked to learn I had CLL. Even the friends that I shared the info with were shocked. I don't know what the answer is, I say keep up the running, exercise and eat better. I've been taking Zumba two times a week for the last 6 yrs. and Belly dancing for one year. I feel great. A little tired sometimes but that could be my life style. I drink green tea and try to stay away from red meat and deep fried foods. I go for blood work and to the doctor every three months. I had a temporary scare and had to go for blood work monthly for a short time. Now this month I'm back to every 3 months. I too have weepy days but they pass. Anything you do for yourself or others that makes you feel good, I say go for it.

God Bless Kiddo

tscadron
Posts: 10
Joined: Jun 2013

Hi Sealbeach67:

I just saw your post -- I haven't been on this forum for a while.  Sadly, I was out of town for several months, with my mom who was battling stage IV breast cancer.  She passed away the day after Christmas.  I'm still grieving pretty badly but have to say, her experience has put my own CLL in perspective.  I'm not symptomatic now, and the true tragedy would be if I spent the next 5, 10, or 20 years -- however long I have on watch and wait -- worrying about what might happen when I DO become symptomatic.  Right now, my CLL is cancer lite compared to what my mom just went through.  So my goal now is to live in the moment, run as many marathons as I want, spend time with family and friends, and not sweat the small stuff.  None of us live forever: the key is to embrace life while you're here to enjoy it.

And to that end, I'm signed up to run a marathon in March as a fundraiser for the Leukemia and Lymphoma Society (LLS), which funds clinical trials and other research.  And I'll run it in memory of my mom, with her picture on my back.  I've already raised $2400 and donations are still coming in.  This is the best response I can think of to my diagnosis this year and my mom's death.

My best to all of you.

 

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