Do people live a near normal life expectancy with CLL if they are CD38 negative??
CLL Indolent: Do people live a near normal life... - CLL Support
CLL Indolent
Written by
J_88
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16 Replies
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Furjj, With or without the more aggressive type of CLL, people are different. More with indolent type of CLL tend to live a more stable type of life while ones with the more aggressive type tend to have a more rougher path. As for myself I am CD38 positive, 13q, Trisomy 12, 17p and unmutated. I was diagnosed last October but my doctor says I have had the disease since 2014. I have had no treatments of any kind. Here as of late I have had a sinus infection once and a slight cold. But for the most part I live my Life. I go to stores, concerts, movies, restaurants, take care of about 10 other people. I stay busy. Life is for the taking and I take every day. I have seen people with the good CLL go straight into treatment while others with the aggressive CLL still going along for years without treatment. Take care of the CLL part but do not let it over come you and define who you are. STAY STRONG AND REMEMBER THAT A CURE IS COMING SOONER THAN LATER J.R. 🤠🤠🤠🤠🤠🤠
JR
Excellent advise. I am 20months W&W and stable. Hope I never need treatment.
Having said that, I feel strange that in our advanced world,we know very little about CLL. Mostly the answer is " EVERY INDIVIDUAL IS UNIQUE AND SO CLL IS MUCH LIKE A GAME OF DICE"
Even if nothing is predictable, there cud be some data to say if CD38 has any significance at all in disease progression?( Based upon analysing large number of CLL patient data...)
I myself feel disressed bcz NOTHING can be said and only alternative is get CBC done every 3 months and keep my fingers crossed ......
My best wishes to u , Furji and all of fellow cllers..
vinnet
Bonnet, the time is coming for when you get diagnosed- you get treated. No more WW. But having said that this should have been done like YESTERDAY!!! As for bloodwork draws and such. Please read my post about Ben + Human Spirit = HOPE. We think of our bloodwork and what the outcome may be. Ben's journey has been an inspiration to me as well as many many others. I had the honor of meeting him and he touched my life. STAY STRONG J.R.
Thanks JR. I will try to see the post u mentioned. I am bad in technology and rqst if u can resend me the post....
vinnet
Vinnet,
I to feel distressed about this monkey we all carry on our shoulders,according to my doctor CLL is the most researched cancer there is. It is just hard to find information that those of us who are not real bright ( only speaking for myself ) can understand. My Doc is great when it come to explaining everything. i just need someone to explain the explanation.
Always remember Every test that you have experienced is the kind that normally comes to people. But God keeps his promise, and he will not allow you to be tested beyond your power to remain firm; at the time you are put to the test, he will give you the strength to endure it, and so provide you with a way out.
Hang in there we all need each other to battle this monkey
james
Thx James. In India, the doctors are too busy and also not being cll specialist, they tell u nothing. Only item is whether or not treatment needs to start. If not, then they tell me to return in 3 months. No discussion on QOL. Even GP not helpful. He says that I am faking my fatigue.
I am hanging on with the hope of getting long w&w and improved qol...
vinnet
Hi Vinnet ,
so sorry that you can not get good information in India, what part of India do you live in?
One word of encouragement is that most Cll is slow growing and many can be on watch and wait for many years. This site is invaluable when it comes to needing information.
As far as your fatigue, have you had your thyroid and vitamins D3 & B12 checked ? Once I was given medicine for all 3 my fatigue is much better.
Please write back and tell me more about yourself and what it is like in India.
you can send me a private message if you prefer
james
James
I value this site enormously because it gives me a feeling of great support. I can read and learn as well as ask questions which get responded very quickly.
I live in city named GURGAON, adjacent to New Delhi. It has attracted big names like GE, Ericsson, Nokia, etc as it is very close to intl Airport of Delhi. It has good pvt hospitals like Fortis , Medanta etc. which are very expensive but attract patients from neighbouring countries like Afghanistan etc .
I was tested and Thyroid, D3( 46) and B12 ( 450) are in normal range. But QOL is not good. I have started B12 and D3 tablets because my homeopath ( i can talk to her on phone, while onco/gp at Fortis are not available.) I also do Yoga and meditation for over 10 years. I am continuing , but low body energy is the most compelling issue. Onco/gp dismiss it as my MENTAL fabrication. I am trying to get actionable advise from this group which I can follow and which have worked for many of us to live neat normal life during wnw. Ofcourse, I wish to do anything that can cure or atleast ensure disease does not progress..
I am 67yr male and retired. So spend most of my time reading.
Where r u based?
regards
vinnet
Vinnet, so glad to hear from you. I live in Butler, Missouri in the USA. we are about 60 miles south of Kansas City. I to am a male 67 and retired. I have been on watch and worry since 2015. My doc told me that I will not have to start any treatment until at least 2020. Hoping for a cure by then. It would be better for me if I could lose 100 pounds but it is so tough when you don't have much energy.
Keep in touch and let me know how things are going
james
James
Good to hear that your doctor says that u will not need treatment till 2020. What is the basis? Is it accepted by cll experts? I am stable for 20 months and very keen to get 10 yr w&w. Treatment in india is too expensive. Ibrutininb are out of reach. So, long w&w is ideal outcome. My onco does not make any such definitive statements. He says that it is a game of dice. I may never need any treatment or i may need it in not too distant future. That is why i need to go every 4 months..
regards
vinnet
Great positive post! 
I don't understand the CD and trisomy what is that?
Hazel
Hazel - Best I can explain. CD 38 is a protein expressed on cells. It has been recognized to be a factor in a number of illnesses from HIV to Type 2 diabetes and others as well as CLL. The significance of it in CLL is that it is used as a factor in determining the course of one's disease. Expression greater than 30 percent could mean a shorter time to treatment and a rougher clinical path. While under 30 percent means possibly a longer time to treatment and smoother path. It has been known to be 70 percent accurate and can change over time. Trisomy 12 is a chromosome and when this is found to be abnormal can indicate a rougher path for clinical treatment. Trisomy 12 can be a on the fence marker. People that have this marker can fall either way. It is also considered not as good as the 13q but way better than the 17p. Both of which are markers. Having said that. With today's treatments any of these markers can be overcome. The treatments are coming at such a pace that the Specialists are finding themselves in a state of confusion of which treatment to use and for how long. I hope this explains things a little better. It can be confusing. Have FAITH AND BELIEVE. STAY STRONG AND REMEMBER THAT A CURE IS COMING SOONER THAN LATER J.R. 🤠🤠🤠🤠🤠🤠
Trisomy 12 means there is a 3rd chromosome 12 instead of the normal 2.
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