We're so nervous.dr said no treatmet is needed now;but isn't there anything that i can do to stop the progression?
Tnx for help😢
Hii everyone.my 52y mother was diagnosed with ... - CLL Support
Hii everyone.my 52y mother was diagnosed with CLL 9months ago,her wbc count is 18k now and 14k lymph.trisomy12+(21%) ang igG hypermutated
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Keyvanlvl
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24 Replies
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without knowing what country your in it's hard to know what options you have.
Keyvanlvl• in reply to
Hii, we live in iran rightnow,but i have american passport so I can go there if it's necessary for any consultation of advice from doctors in usa
lankisterguyVolunteer
There are several "Pinned Posts" on this page that maybe worth reading.
suggest you start with these and after you read them, look for a box labeled "Related posts" on those pages for further reading on the same subject.
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healthunlocked.com/cllsuppo...
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healthunlocked.com/cllsuppo...
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healthunlocked.com/cllsuppo...
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The bottom line is that: CLL is a chronic incurable disease, so like high blood pressure or diabetes, things like improved diet, weight loss and exercise can alter the trajectory of the disease and make your mother much more fit and ready to deal with all the side effects of the disease. But unless she is one of the fortunate 30% that never need treatment, she will probably need to be monitored every 1 to 3 months to track her disease progression.
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Eventually she may need treatment, but likely not for many months or years. When she does need treatment, there are several daily pills (approved in the last 6 years) that are very effective in controlling the disease. Like high blood pressure and diabetes, the doctors will hold off treatment and encourage self help like diet, weight loss and exercise to extend the watch and wait period.
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Len
Thanks for the information...it was really helpful...fortunately she's in a good shape and she exercises 4days/week, but she's so nervous about her health and i always keep saying that no need to freak out.but honestly i'm very concerned about her too
NewdawnAdministrator
Hi Keyvanlvi and welcome.
You’re bound to be concerned about your mum and she’s relatively young. The good news is she’s dodged the worst prognostic factors and being hypermutated Trisomy 12 puts her in the moderate to low risk range. It could be many many years until she requires any treatment but unfortunately, apart from keeping fit and eating healthily, there’s no surefire way to halt progression.
It’s always more useful to describe her Absolute lymphocyte count (not percentage however) than WBC but your mum’s is at a very low level presently. If she’s feeling well with no symptoms my advice would be for her to just live her life well and for you to park that terrible worry for now. It isn’t necessary but we all understand it.
Best wishes,
Newdawn
HI Key
unfortunately they need to wait and see how her CLL progresses as it could progress really slow and 1/3 of patients many never require treatment
Should it progress it can be controlled but not cured with the many possible drugs, But each have risks that require careful consideration by a specialist that understands CLL
Thanks so much...do u know who's the best specialist for cll in usa?or a medical center that i can go there anad gather some more information
Hi Keyvanlvl,
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Here is a list of CLL expert doctors: cllsociety.org/toolbox/cll-...
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Probably the best known and easiest to access geographically from International cities would be the MD Anderson docs in Houston or the New York Presbyterian docs in New York City. There are many other excellent CLL experts on the list, in smaller cities and smaller practices with fewer doctors, so if you prefer a different city or hospital system, please choose from the entire list.
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The CLLSociety site cllsociety.org/ has many resources available if you browse around after viewing the doctor list.
And you can use this HU site to gather lots of information and ideas. Just look for the topics, related posts and pinned posts.
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Len
Thanks alot🌹🙏🏻
Welcome to our community this a great place to be for patient as well as caregiver. We all fully understand where you are at this time. All our life we have been told that you treat cancer immediately but CLL is the exception and that is a very difficult pill to swallow for sure. I was told the day I was diagnosed that I would have no control over the CLL. And the only thing I could do to be proactive would be diet, exercise, attitude and update my immunizations. They gave me my first pneumonia shot and sent me on my way. I saw my doctor every 3 months and had labs done and for 3+ years I in did the Watch and Wait thing just waiting for the shoe to drop. I have had CLL for 30+ years. I have been on treatment for the last 27 years. In January of this year I went on the relatively new Imbruvica 420 and I feel so great!!! There are so many new things out there for us. Your Mom will do great....get her involved in our community as it will give her and you a bunch of support! We are wishing you only the very best....we would love to have you keep us posted on things as that is how we all learn.
🙏😍☘️💕
In the USA you have the cll society and patient power and possibly others but they were all created by and for CLL patients
The CLL society is setup to ensure you can find the correct doctor
While i HATE the term good cancer in the vast majority of cases you have time to find the right doctor and make careful decisions
hi
well, you have been receiving some very good advice. As has been pointed out we all have a tendency to freak out when the word cancer appears. But, the key take away for CLL is the C in the name. It stands for chronic ,,,,chronic meaning a condition is a human health condition or disease that is persistent or otherwise long-lasting in its effects. As you continue to read on this forum ,,you will see many people that have had CLL for very many years. Some of which went for five or 10 years without being treated.
I'm not sure that anyone without a very deep knowledge of your mother's health could even guess when your mother might need to start treatment. But, important thing to know is that most if not all of us were in the category of ,,,, watch and wait,,, for some amount of time. That is been clearly said by most of the posts that you have received. Is watch and wait easy ,,,, no ,,,, but it means that your mother is not sick enough to start treatment. That is very good news ,,,, doesn't make the waiting easier,,, but it is very good news.
So,you ask about looking forward . or more specifically who the best CLL specialists in the USA are. This is very, very, very, hard to say. There are some very very good people out there in a variety of institutions. If you were to do a simple Google search on the top 10 cancer treatment facilities you might be starting to get an idea of where to find the best people.
I am 73 years old and had a variety ( like a lot of old people) of things that are or have been wrong with me , Including three different types of cancer.. All of that contributes to who to see and where to go. And in the USA health insurance might also dictate where someone can go. I have no idea of who what or where to go in Iran.
For my more serious health problems I usually try to seek out hospital/clinic that is associated with a university or college. The reason I do that is my feeling is that the doctors and nurses who working these facilities are the better informed professionals.
I'm not going to get into who I see or where. But, the doctor that I see is involved in research, and he only sees patients with CLL/SLL. I'm fortunate to be in a place where I have access to that sort of person. Now, it's probably important to understand that I might receive as good, if not better treatment without seeing that particular Dr. But, seeing him and knowing his experience gives me solace, piece of mind, which is important. It probably is important also to remember that CLL is a very common and well-known disease. So even doctors in the most rural areas probably will subscribe one or two of the top monoclonal drugs that are used in the modern-day treatment of CLL. So, I may be wasting my time driving 2 1/2 hours each way to see my "specialist"
But, as has been pointed out peace of mind is what were all after. And that's not the same thing or the same Dr., or the same Institute or will everybody agreed that a teaching Institute is a better place to get treated then , their local doctor.
It's very easy to say relax don't worry about the watch and wait., But it is much much harder to do.
Probably what you're doing now is the best thing that you can do. Get informed, pass on what you're learning to your mother. And be glad that it's 2019 ,,, there are some great drugs and advancements happening .
sorry I kind of got rambling along ,,,, must've had too much coffee this morning,,
best wishes to both you and your mother.
Michael
73 -year-old mail
watch and wait for 12 months
first-line treatment ,,, a clinical trial which wound up lasting six years
currently relapsed and trying to decide on my next treatment
Thanks a lot,it was really helpful🙏🏻🌹
I am sorry your mom has Cll. I also have the trisomy 12 marker as well as Cd38. I just started Ibrutinib, it has been 7 years since my diagnosis in 2012.
Due to previous lab tests I have had Cll for over 20 years.
I hope this helps your mom feel a little better.
I am 69 and was diagnosed 2 years ago. I read a little and have come to this conclusion that is helping to keep me sane about it. Because it is scary and you naturally seem to wait for the other shoe to drop. There is no evidence that early treatment will help anything. The longer I am on W & W there are better chances of better treatments that can be discovered. Some days of course I worry but I am living my life. Good Luck to your mom.
Sorry about your Mother’s diagnosis! I felt the same fear in 2001 when I was diagnosed! I am now 81 years old and only started taking Ivig infusions last year because of low immune system. My WBC has risen slowly over the 20 years from about 15 to about 50 now and the CLL had not been a life altering thing for nearly 18 years. My Dr said “You will die with CLL but not of it”. I would advise watch and wait without worry as much as possible! Keep healthy in every way possible and perhaps a cure will be found before it becomes a major problem for her! The Lord is my Shepard,
Like your mom I was diagnosed in 2013 with Trisomi 12 & 19 and mutated. It took 5 years for the CLL to require treatment.
I joined the CAPTIVATE clinical trial that combines Ibrutinib and Venetoclax a little over a year ago.
Today the CLL is gone from my blood and bone marrow. I am what they call MRD negative in both. The bone marrow was at the time of treatment infiltrated by 85%, now 0%.
They say CLL is incurable but so far the new treatments might prove this wrong. We'll have to wait another 10 years of data to come to it.
In my case, there is still Duvelisib and even CAR-T if I become resistant to the drugs that worked for me so well.
Tell your mom to chill and relax...stress is probably the first thing she should get rid of as soon as possible. She's going to be ok.
At this point, I would be more concerned about potential secondary cancers due to the weak immune system with CLL. Dermatology appointments every 3-6 months is a must do.
I was really lucky to be diagnosed in 2013 and not 2003. I've seen major progress done in the past 6 years. Tell your mom she's even more lucky...the next 5 years will probably see a cure to eradicate CLL, maybe it's already here.
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