CLL

tf168wife said:

CLL
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!

cooksey23 said:

Keep the faith
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

peachy1 said:

Just breathe
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.

gonegolfing said:

cll
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.

jhartje said:

Watchful waiting
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 said:

Not Waiting but still watchful
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 **** 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 !

gonegolfing said:

cll
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.

haposwald said:

Chemo questions and just wondering
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

jhartje said:

Watchful waiting
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.

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.