CLL Support Association
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CLL; when is treatment?

I am a new to this site; My white count was discovered to be 14 by my PCP; she sent me to oncologist; who sent me for blood tests; they took 13 viles; results she said is CLL; we will "wait and see". Eventually went up over 2 years to what it is this week; 69; when at 40 oncologist recommended I take Chemo drug; Leukeran; I went to another for second opinion; she said the dose was very high for 40; and should not be taken. I did not take it; now at 69; still she says "wait and see" til next visit in 3 months. While reading posts on this site I notice most do not mention what their numbers are. Have gradually become very "fatigued" can't seem to stay on "GO" for more than 2 or 3 hours any given day. Simply seeking comments/advice on the subject if the 2 are related.

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Welcome to our community Oldguy (though if you are 68, you aren't old for the CLL community, particularly given the median age of diagnosis for CLL is around 72).

If the 40 and 69 figures are your white blood cell counts, then they are not a reason to start treatment. This informative pinned post covers how specialists decide the right time:

healthunlocked.com/cllsuppo...

In your case, the relevant trigger your current specialist is looking at is the lymphocyte doubling time, with a doubling time of in under 6 months after the count has passed a threshold of 30 being one possible trigger. Your doubling time looks to be around 12 months if I have interpreted your information correctly. Extreme fatigue can also be a trigger for starting treatment, but many of us struggle with fatigue not considered bad enough to start treatment and with lymphocyte counts lower than yours. There's plenty of discussion on how to improve fatigue levels elsewhere, given it is a common challenge faced by those with CLL, despite the dismissal of this symptom by many doctors.

Leukeran/Chlorambucil isn't much used nowadays, particularly just on its own, as there are far more effective treatments available. I recommend you seek a second opinion from a CLL specialist or at least a haematologist specialising in blood cancers. If you are prepared to share roughly where you live, other members living near you may be able to give you some recommendations. Just lock your post (click on the 'v' below it and select Edit and change the setting to 'Who can see my post'.) and add that info into a reply so others are more willing to respond.

Neil

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Hey thanks for the reply actually my age is 69 and yes it has doubled in 6 months from July until last week it has gone from 32 to 69. And my first oncologist isn't quite my age but is in the related to the Houston Cancer Institute the oncologist that I changed to looks like she's 21 to me but anyway so I have the older established oncologist versus the newer more modern who agrees with your comment that Luca ran is not good

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Good Morning OldGuy! Just so you will know that 68 is today’s 58, so you are not old by no means. After almost six months of dragging out of bed to get ready for work and suffering from complete exhaustion during the day, taking a nap instead of eating lunch and after work I would sit in my car until I thought I had the energy to drive the fourteen miles home. Back up to about 1995 when my mother had the same symptoms and it took the doctors over a year to diagnose her CLL. I was her primary caregiver for her next eight years before her death, also heart problems. She was 71 years old when diagnosed, I was 69. What are the odds? My count was also 14 when I finally got so fatigued I physically had to have help getting into my primary care doctors office. I told him what I thought my problem was so he referred me to my late husbands Oncologist/Hematologist - that’s another story. Primary care doctor also shared the my WBC had been up and down for three years. My diagnosis was correct. I also had second opinions from two other doctors. I completed six months of chemo taking Gazyva infusion starting daily, then weekly, to once a month and Leukeran 20 pills every 14 days. and never missed worked except the day of the infusion. My last treatment was December 28, 2015, I worked that day and took the 20 pills while working. Not bragging, I just feel that I got along fantastic through my treatments. I was in decent physical shape, no BP problems. I had Faith that my God was carrying me each minute, love of family and friends. I always had someone by my side during treatments. This December was two years and since my retirement in June 2017, I have gotten along very well. I continue to have my three months checkups. I highly recommend that everyone keep a daily journal through their treatments and make it fun by adding pictures and quotes/jokes. I don’t know about you but I can’t depend on my memory anymore. Good luck and may God continue to bless you!

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You are the first person I have heard from that did take Leukeran; I was supposed to take it similar to you; 20 pills; on and off for 6 weeks; that was when my white count was 40; changed oncologist/hematologist; she said don't take that high dose for such "good numbers" which also referred to my "fish" and others on her computer screen, trying to explain it so I'd understand. As far as Memory; what memory??

I could tell you some jokes, but better not; one of them is in the White House!!!

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I realize that my count was not really high to begin chemo, as did my doctor, but after seeing three doctors and having been the primary caregiver for my mother, I didn’t want to get into the condition that my mother was in. The progress that has been made with the treatments for Leukemia since my mother had treatments ending in 2003 is remarkable. I’ve had two years free of any sign of CLL so I am happy with the results I had with the Gazyva and Leukeran. Every case of cancer in any form is different, as is every person. Good luck! Stay positive!

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I would see Jan Berger at MDA since you're in Houston. He's one if the local CLL experts.

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Hi OldGuy68! I haven’t been on in a very long time. Hope you are doing better!

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My WBC was 229 when I started Imbruvica. Also had swollen lymph nodes. Imbruvica works real well for me, lymph nodes are gone and WBC coming down nicely. It sounds like to early to treat. Best of everything to you. 🙏

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Thanks for the advice I had no idea about sites like this but it's much better to talk to individuals I think then a lot of the nonsense that you can hear in a hospital setting

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Welcome to the site, sorry you have to be here though. I just started treatment last month. My drs has always said that my white count was not as important as other numbers and symptoms. My platelets dropped to the 80’s, I had multiple areas of swollen nodes and my spleen was quite enlarged. It was funny, I felt fine, no fatigue, night sweats, fevers. My white count was 179 when we started treatment.

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I'm going to get my test results on Monday; many people on here refer to other numbers; I don't know what mine are because she hasn't been giving me results to take with me; only the "wait and see" with white count of 69; but previous oncologist told me to take luekaran when it was 40; I've since learned than 40 is way too low for that drug; although this oncologist is connected to the Houston Cancer Institute. It has been suggested to try a Hematologist than specializes in CLL. I have no sweats; weight loss, or lymph node issues; but do have bad case of fatigue; actually have gained about 6 lbs; and had thought it was from not getting enough exercise.

What treatment are you on, if you don't mind chatting.

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I don’t mind at all, I am part of a clinical trial at Dana Farber In Boston. It is Ibrutinib (imbruvica) which is a pill, daily. Every 4 weeks I have a 3 day chemo treatment of FCR. This particular study is for treatment naive patients (patients who have not had treatment yet) that are under 60 and in good health (other than having cancer 😜). I would definitely find a CLL specialist, there are so many new treatments out there. If are treatment naive you may also be a candidate for a clinical trial (if that is something you have interest in). You also want to know what your deletions are and if you are IVHG mutated. I don’t know the intricate details of CLL, but certain deletions and mutations respond better to some medications vs others. A specialist can go through all of that with you. This is a great group, you will find a lot of support here.

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Ooops...just reread your post. I'm quite familiar with the hospitals in Boston as I have a son who was born with cystic fibrosis and wa s diagnosed at 17 months. He is now 36 a registered nurse, a paramedic in Pittsfield and has been going to Mass General since he was 17 months old!

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Hi "OldGuy" Great moniker. Love the car pic (my era). I'm your "Older Guy" having just turned 75. i was on watch and wait for a number of years, until my WBC reached just over 200. On IV chemo for about 4 mths, and then switched to Imbruvica (Ibrutinib) for another 3 months, but had to stop for about 14 months, so they could repair a melanoma. Watch and wait again until count went back to 240+, and restarted Imbruvica. Numbers are normalizing slowly but steadily, so I'm happy. I still work (mostly from home), and still get tired sometimes. Counts are important, but so is how you feel, and the good Drs know that, and consider your overall health and vitality. Find a CLL specialist - knowledgeable and caring. We are all here to help.

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so you think I'm a youngster, I guess I am at a mere 69; the car is a 1970 El Camino; 454; 4 speed automatic; for sale; you can rumble down the street in your neighborhood for a mere $25,000. I bought this toy last year; from a guy who was 80 with lots of health problems; all newly rebuilt; boy was that dumb; I 'm afraid to drive it; don't want to get a scratch on it! Your WBC over 200; mine was 39 in July; going to pick up results today for last weeks test.

As I've seen on this site, a lot of my numbers appear to be not too bad;

although I don't remember what most of them mean.

It appears good that I didn't take the Leukeran; the oncologist I switched to, who really seems to know CLL, (is Methodist West) thought it was way too high a dose for my numbers and not

necessary. It took a while to get that drug; so I had switched Oncologists and hadn't taken it so back to "wait and see". The fatigue that I thought was because of not enough exercise; now seems more likely to be related to CLL. If I'm "busy" for about 3 hours, I need a nap.

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Wow - some toy - beautiful. Advice (wanted or not) Go out and enjoy it. You deserve it. Now for the other stuff - When your body says "I'm tired" - go rest I spent so many days "resting", i got to enjoy it). When you're hungry - eat Healthy. There are Leukemia diets because all meds have side effects of some sort (science isn't perfect yet). Most important is the Drs. This site is super informative, but the Drs get to make some of the decisions. You get to make a lot of decisions also, so make sure you get all the info you need to make an informed decision. That's where this site is at it's best. I just found part of the site that has various forms for you to chart your own blood work, and well a other important stuff (heading is Understanding your blood results), as well as a large array of terminology regarding the blood work tests. Take your time, but check it out. Drive carefully.

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I learned to ask for a copy of my results when the doctor walks in the room. It is helpful to have a visual while the doctor is talking. Also take a recording device or use a phone app. It is very helpful to be able to listen to what was said again later.

You might want to go to patientpower.info and watch the videos done by Dr. Susan LeClair about understanding your labs. She is very good at making the complicated more understandable. I used to watch them a couple of times - once to get the general idea and then again to process things better.

Ask if you have had your mutational status tested. You said that you've had a fish test. It will give some important information about which treatments could be best for you ?

Don't let anyone rush you into treatment!!! Ask a lot of questions, make sure you get all of them answered, then consider at least a consult with a specialist before agreeing to anything, especially since your WBC is so low. When to treat is as much an art as a science. Too many doctors rush people into treatment - sometimes too early, sometimes the wrong one. Your choice of treatment the first time around is very important!

It's also worth finding out what trials are available to you, as some of the next generation drugs and / or combinations are showing impressive results. MD Anderson has several running for CLL.

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Hello Mosaicgigi did you have any bulging/pain/discomfort with your enlarged spleen? Mine is diffusely enlarged and there is a bulging there but my GI doctor says it's my sigmoid colon as I have a large colon with alot of loops, twists and turns. My WBC is 127, platelets are 203, hematocrit 32, hemoglobin 11.4 and rbc's 3.94. I was diagnosed in September of 2007 and am still on watch & wait. I'm just getting over sinusitis / bronchitis which began in October of 2017...so 3 months. I am from Western MA but live near Tampa, Florida and go to Moffitt in Tampa. My first visit was this past October 2017. My labs showed my IGg was 586 so I have had 2 ivig infusions so far with another scheduled this January 16th 2018. I think they are finally helping. I do get short of breath every now and then and I have been tired these past 3 1/2 Months. I haven't had any fevers or night sweats. Doctors do indeed watch our red blood cells and if they start dropping below the normal range that can be an indication that it's time to start treatment. Incidentally the ivig infusions have boosted my platelets! If you don't mind, where is your doctor located? Best regards, Dianne

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Hi Dianne, I did have some discomfort with my spleen. I felt like I had a stitch or cramp on my left side frequently and I had to be careful how much I ate as I would feel sick if I ate too much. I had some bulging on my left side as well. I could “see”’that it was enlarged. I go to Dana Farber, I see Dr Brown. I have had such a good experience at DF, I can’t say enough good about them

Beth

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Ask both doctors for copies of all of your medical records, including Doctors" notes. The HIPAA Law guarantees you the right to your medical records in the US.

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Leukeran is a form of Chlorambucil which is an older drug, with a history which means its results are predictable. Usually however it is given together with an monoclonal antibody like Obinutuzuma (Gazyva), which is given by IV infusion. This drug is more specific in its attacks and is less harmful to healthy cells, by binding itself to the proteins that are particular to the clone cells which it then kills. Studies have shown the combination is more effective in terms of progression free survival during remission. You can read studies through Google by asking about Chorambuci (Luekeran) alone versus Obinutuzuma (intravenously) and Chlorambucil (given as a pill) ncbi.nlm.nih.gov/pubmed/255...

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To help you find a CLL specialist:

cll-nhl.com/p/cllnhl-doctor...

cllsociety.org/toolbox/cll-...

Can't stress the importance of this. Most generalist hematologist/oncologists aren't very well versed in CLL. The disease is so variable from person to person, and the treatment landscape and our understanding of CLL are evolving so rapidly--CLL specialists are most current in the whole picture.

Wishing you all the best!

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Find a CLL specialist as others have said. This is more important than any other advice.

The treatment scheme is changing too fast.

Also, if you are unable to do what you want due to tiredness it is time for treatment. If you have to pull back in work etc. Many who have cll are tired and fatigue but live sedentary lives where they are not so active. They can last longer without treatment. But if you are active and too tired to do what you want it may be time.

Also, CLL is damaging our immune system. It is opening us up for more cancers and infections. Why would we wait? The people on this list and others on the internet usually are the ones with problems. But those who are doing well on Ibrutinib and other drugs aren't reporting here...with a few exceptions.

We have better drugs that do not damage...as far as we know...the treatment guidelines were established from a report in I think 1998 when the treatment landscape was different. The conclave where the specialist decided what was the best time and factors to treat was established 10 years ago. That was a different world and now cancer centers across the US are leading treatment trials for treatment naive patients to see if it makes more sense.

I am still working and very busy. With a absolute lymphocyte count of 109 I may not fit other categories for "time for treatment" but I can only work 2 to 3 hours like you and then I am beat...I will be starting treatment soon. My doctors agree.

So when everyone is shouting time for treatment protocols think about what your quality of life is like, how many more infections you want, and how long so you want to live with a compromised immune system with all that that means.

Just one man's opinion.

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Hi OLD Guy at 68 , I am an old guy at 66 , sounds to me you need to find a good doctor who is a specialist in CLL. There are a lot of good doctors out there but CLL is a different breed and you need a specialist. Feel free to private message me if you need encouragement .......james

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Dear (not) old guy with really cool car (Chevelle??),

I was dx 5 years ago (age 55). Have had high WBC's (over 120K) and am on "watch and wait." I have learned that you can have very high WBC's but also need to take into account your other labs (platelets, lymphocytes, etc) I am a nurse so had the good fortune of knowing who one of the best hematologists was in the area. What I would suggest to you is:

1) find out your chromosome abnormality and gene mutation. (blood test) This is huge. It will tell you what "category" or risk group you are in. This will help determine any future treatment. I am extremely blessed to be a 13q deletion, mutated. (you can Google for a list of "risk groups")

2) I also was very tired at first, some of which may have been a decrease in exercise as I've aged. My one area that helps me the most is rest: I require 9 hrs. of sleep and, if I can't sleep, I have medication that I take. Proper sleep is your body's way of cellular repair, assisting your immune system, etc. In addition, I added a vitamin regimen and juice. But other than that, I don't freak about my diet, I just do "everything in moderation"

3) In addition to monitoring labs, my physician also checks lymph node, spleen involvement. I had my first CT scan last year which showed "mild" spleen and some slight lymph node enlargement.

4) There are so many "target-specific" treatments coming out which move away from chemo. Ibrutinib is a targeted therapy but there are even better ones coming down the pike.

I'm sorry this is so long. I rarely post but wanted you to know there are many of us out there. For me, particularly being in healthcare, it was extremely difficult to wait and see, I'm used to control. Ha But, I have learned only He is in control and I have to give this over to God; having done that, I am at so much more peace.

Best wishes for you in your journey.

Karen

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Well you certainly sound in the know I had the CT scan and the bone marrow biopsy. From all that I've read on this site it's more a question of trying to understand all these different numbers and what they mean. I do find doctors do not tend to want to hear various opinions and stories that do not coincide with what they think at the moment. Also I have a daughter who is a ER nurse and has been for about 10 years she's stressed out and looking to get out of that. I've had numerous blood test with one of them taking 13 vials. So anyway I'm still on the wait and see until the next visit which I'm guessing might start some kind of treatment has the doctor called me herself after that last blood test came in and the white count was 69. And that's not with me fully understanding all the other things that she explains. I realize it's a lot more than the white count as I've seen other people's white count be over 200 and they're still on wait and see. The one thing she pointed out was I've doubled in 6 months as that reading was 32 in July and to her that's a red flag when you double in less than a year. Thanks for the response this is the first time I've been on any site going back and forth with so many different people with the similarly same health issue

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I am new to this site also ... My son was diagnosed in Jun of 2017 , at 27 yrs old WBC over 600 thousand Red blood cell count was 3, and on heart attack watch , white blood cells were bursting and trowing alot of potassium into his system, with pneumonia on top of that. He also did CFR , from June to September and is n a hematologic remission as of now, he goes back in on the 13th for his next blood work, I'm hoping and praying that it's not back. Prayers for you in your CLL journey , my father in law passed away from this at the age of 76.

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