Help! Slow down the progression of CLL

I could really use some advice. I went for my routine three month checkup yesterday.

My numbers have increased and the doctors say this is an indicator of progression in my CLL. He wants to see me next month to repeat labs.

My ALC doubled, My lymph nodes have increased in size and my LDH has also increased. (Dr. reassured me he did not feel my labs and physical were consistent with a Richters transformation)

He suggests that I get into the routine of running and look into stress reduction.

I am working full time, 4 college kids.

I know there is no quick fix me upper here. However, I would love the advice of my fellow community on how I can slow this CLL. What have you done to help?

I will take all the advice I can get. I will also let you know how my next check up goes.

FYI 52 yo, Dx. Trisomy 12( July 2015 waiting and watching) mutated.

As of 2/22/17

WBC 56

Lymph # 39

Lymph % 59

Platelets 231

LDH 427

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41 Replies

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  • When this disease starts to threaten watch and wait it is a shock and little that you can do to stop progression towards treatment.

    But you can stay healthy. Exercise regularly and eat a healthy diet. You can have the odd sin.

    Getting stress out of your life is important. I don't suggest stopping work but family life could have a detox. 4 college kids can start to take some responsibility at home. Hopefully you have told them. If not it's now time.

    Best wishes for the future

    Do not be afraid of treatment, it works.

  • Besides doing things to feel good and destress and being healthy... there is evidence that green tea helps suppress CLL - it has to be really large concentrated amounts in study. Amounts that would make you sick. But placebo with a little bit of science behind it never hurt anyone!

  • The study you are referring to is one that was done at Mayo Clinic.

    The found that 30% of their treatment naive CLL subjects responded positively to high doses of EGCG found in green tea. I don't believe that conclusions were that placebo was involved.

  • I believe it was 29 of 42 patients... pharmaceutical grade EGCG..not OTC of unknown quality...

    This low dose EGCG chemo was prior to understanding of clonal evolution... this approach may select out more aggressive clones... no proof, but it is something that needs to be considered in my view.

    ~chris

  • Hi Jemisavs,

    I understand your concern because my levels are trending up and I'm due my next consult in less than a week. My ALC and WBC is higher than yours but platelets around the same level. I'm not sure that my LDH is routinely tested here in the U.K. (not sure where you are from but sounds like the States).

    It sounds like your doctor has factored in consideration of your other blood results in reaching his opinion but I can understand your concern at the high LDH.

    'Elevated LDH levels indicate that lymphocytes are dividing, that red blood cells are being damaged, and that lymphoma is developing or progressing, according to Lymphomation.org. However, a rise in LDH levels is a non-specific indicator of lymphoma progression and may arise from unrelated conditions.'

    I understand that there's 5 subtypes of LDH too which complicates it and a raised level can be indicative of a number of conditions including anaemia, thyroid issues, cardiac problems and of course it's used to test for the posssibility of Richters (but doesn't always show elevated in the latter I've heard). Presumably there's no possibility of anaemia?

    I think it's wise to re-test it again in a month because there can even be lab variations.

    My lymphocytes have been taking a hike upwards last two consults and I'm pretty sure stress is an issue plus in my case a stubborn inflammatory eye condition and other inflammatory joint problems.

    I'm sorry if this isn't reaching any conclusions for you but it sounds to me like your doctor is on the ball with this and keeping a closer watching brief.

    Try to take it easier on yourself if you can for the next month and hoping the results will be much better.

    Warm best wishes,

    Newdawn

  • Thank you for the information. I am still confused about lymphoma versus leukemia. I was told I Have leukemia. My doctor is Dr. Rai. He is the doctor that the Rai-Binet was named after.

    I do not have anemia. I do have thyroid issues. Always have.

    I was wondering how high other peoples LDH are.? My lymph nodes are quite large on my neck and under arms. Greater than 4 cm. It is starting to become very noticeable.

  • LDH... it is not the number it is the rapid rise that signals a transformation... but nunbers classically are in the 400-600 range... I have spoken to a number of Richter's patients and the rise is usually quite rapid... over perhaps a month... some patients LDH get very high... for other reasons...

    I just had my LDH done last week and it is 285... which interestingly is higher than it was when I had a Richter's transformation... at that time it was 218 as I recall... so it doesn't always follow a true course.

    Certainly wouldn't concern me... but you could request a PET scan perhaps...

    ~chris

  • LDH can be tested in the UK. Mine is tested each time. The consultant just writes LDH in the right hand box. Yes it is another indicator of progression or not. Had the test with my very high count and now when in remission.

  • I have CLL and now dealing with Richters Transformation... I've never seen platelets that high with CLL white cells at 56? I remember mine in the 50s and my platelets were in the 80/90s. The only think I might suggest is tty the Marajuana "Hemp oil", the Rick Stevens is potentially the best. This could bring your #s back if you can get going on it and see what a few weeks or a months might do. The THC goes right to blood stream and claims to have and effect in the bad cells. I did not try as it wasn't availsble to me in 2012. Otherwise sounds like to you doctors up to speed and wish you well.

  • I am currently attempting an RSO (rick simpson oil) treatment. I currently am unable to take it as advised by Rick Simpson. Go to Medicaljane.com It is suppose to be taken 3x a day for 90 days. I know I will pop positive on a drug test, however, I don't take it the night before or the days I work. Hemp oil is different from RSO please read and don't be taken advantage of.

    My wbc 53k and lymph 91% my dr still has me on wait and see. So this is the perfect time for me to try and slow this crap down. I take it right before bed, as I do not want a high feeling. I feel rested ( more so than many months) when I wake. my bones don't hurt at night (or I am too high to feel it when I sleep, either way I am noticing small changes. ) perhaps this is placebo, but my dr agrees with my interest in the treatment.

    In Florida you can only get Mary Jane as a complementary drug and not smokeable form. You must be on a registry and the holes to jump through make you feel like YOU are doing something bad. It may be rough to find what you are looking for, BUT LOOK AND YOU WILL FIND SUPPORTIVE PEOPLE AND GET WHAT YOU NEED!.

    I will keep all informed when my next bloodwork is completed. I am looking for a pause not a cure this treatment, since I am not taking as recommended. If there is a positive result, I will take a leave of absence at work and do the complete recommended treatment

    Reference to RSO website removed by admin as Rick Simpson encourages the dangerous use of industrial grade solvents

  • Dear Jemisavs...

    It sounds to me like you have got lots going on working full time and college kids.

    Are you able to reduce working hours and take some time for yourself?

    Can you slow down a bit and put in gentle exercise and relaxation?

    I am accessing some alternative therapies at my local hospital in Bracknell via a charity, and I am making ME time to do regular walks etc (having never exercised- being a couch potatoe who enjoys a drink)

    If I can make myself feel happier in my head it all helps

    Anne

  • Thank you everyone. I am unable to slow down with work at this time. It keeps me busy and I need to pay my bills.

    I started taking vitamin C and vitamin D. I drank two glasses of green tea yesterday. I also took a two mile walk and I downloaded some Mindful Mediation Apps and will begin today

    I am looking for suggestions that have worked for some of you

    Thank you!

  • Hi

    I was diagnosed CLL/SLL end of January this year. Beginning of February I started on the goji berries in salads every day and Matcha green tea (2 cups a day) - must be Matcha powder as it uses the whole leaf (and it is much much nicer than other green teas). A week after I started taking these my night sweats stopped and my swollen lymph nodes in neck and head don't ache as much. So worth a try for you!

    Good luck.

  • Hi. Glad to see you are jumping on the wagon, paying attention to your health and how food helps. :)

    I take Mega Green Tea Extract from a company called LIFE EXTENSION they are reputable. (They are behind the testing that the American Government finally acknowledged, taking 81mg aspirin is suggested to prevent MI and DVT. )

    You can purchase decaffeinated on Amazon. :)

  • Jemisavs5 wrote: My ALC doubled, My lymph nodes have increased in size and my LDH has also increased. FYI 52 yo, Dx. Trisomy 12( July 2015 waiting and watching) mutated. WBC 56 Lymph # 39 LDH 427

    Hi Jemisavs5: Just looking at your numbers a few things stand out:

    Most doctors do NOT consider ALC doubling until you are over Lymph# 30k. Since you are just now at #39k, you can start tracking your future numbers, your past does not count.

    With a WBC of 56k and ALC of 39k, your Neuts are probably above normal, around 15k and with the high LDH, you may have something else upsetting your immune system. Be alert for a 2nd cause in addition to your CLL, whether bacterial, viral or fungal etc.

    The next 2-3 blood tests will likely be very different than your recent past, so track the long term trends. Your doctor is wise to have you back in one month. Make certain to report any other symptoms, and let your doctor sort them out.

    Your Trisomy 12 mutated means that when you do need treatment, hopefully a few years from now, that treatment will likely give you a long remission.

    Please post your results next month.

    Len

  • Thank you so much Len! I will keep you posted regarding my labs!

  • Hi. I have been on watch and wait for 15 years and it can get frustrating not having any treatment and meantime feeling lousy, no energy and quality of life through the floor. It is something I have had to get used to i.e. no treatment of any kind for the symptoms and being told that the blood levels are "within limits" for CLL and watch and wait. I live in England so have to put up with the NHS so if you are in another part of the world where treatment is offered, I think you may be fortunate when the time comes for treatment. I have 6 monthly blood checks and am almost wanting for them to be extremely bad so that the doctors will provide some sort of treatment which will improve my QOL.

    Sorry to sound so "down" but after 15 years suffering and no treatment offered, I am just warning you, that if you disease is slow growing such as mine is, it will be a long watch and wait length of time!

  • I was diagnosed August 2016 aged 47 and have taken this in my stride thinking I will be in w and w for decades. Sadly following a chest infection this week my consultant asked me to do bloods early. These have shown some hikes in wbc and lymphocytes and I will next week learn my fate with regards to the treatment they need to start "sooner rather than later". I am now worried as to what they are going to tell me. Thoughts of not being there for my 11 yr old daughter won't leave my mind. So if you are willing to swap situations then please do. I am sorry that you don't feel well but I feel that your statement should be reconsidered.

  • KAS8 I'm sorry you may be looking at treatment sooner rather than later. I can relate to your worries about your daughter as I am 36 and have a four month old baby. I hope when you next see your consultant you're given more positive news than you're expecting. Best wishes.

  • Thank you Suzejc. You seem very young for this. Sending you love x

  • i KAS8

    I am 46 years old and was diagnosed CLL/SLL end of January this year. My next blood tests at end of March. I am watch and wait.

    I have two daughters age 10 and 14 so I completely understand what you are feeling. Please try and stay positive. And try the Matcha green tea, turmeric and everything else you can, it can only help.

    Best wishes.

  • Thank you PopEine. I do find some comments frustrating. It we all have our own battles to concur.

  • Your are very early in the process of CLL. I would not reconsider my statement and am very hurt at your comment of swapping situations with you. I have a family at home who depend upon me and the thought of leaving them in the non too distant future is not helped by your comments.

    You appear to be in the fortunate situation of having a doctor who takes notice of you and is ensuring your disease is investigated.

    The point of my comments is the failing NHS not taking any notice of my CLL and having my symptoms passed over by an eminent hematologist to GPs who are not knowledgeable enough to treat the symptoms.

    It would be interesting to know of anyone else with CLL for 15+ years who is not receiving the attention/treatment they should have.

  • Hi Alana397

    Would you be willing to share your blood results and maybe more of yoursymptoms. Someone then might be able to help or maybe suggest a way forward for you. Even if it means changing doctors. You shouldn't be made to feel ignored.

    Best wishes.

    Sue

  • Treatment before you are in need can be very dangerous. If you feel that you are not being listened to or need treatment then ask for another consultant. The NHS have not failed me during this journey or others I have been on. I see posts from many in W&W phase on the CLL support group on Facebook. Perhaps if you are not currently a member you could join.

  • Almost to the point that you don't even want to know that you have CLL?? Hard to know what to dispel as age related!! Hope you can find something to make you feel better soon.

  • I take 4500mg of turmeric every day, in capsule form. Green tea his helpful too. I will keep you in my prayers.

  • Nice overview if the risk/benefit of curcumin...

    personal.us.es/mlopezlazaro...

  • Thanks for the link. I take it for the migrating joint pain side effects of Imbruvica, with the sanction of my doctor. Nothing else worked and I don't want to go on prescription pain meds. The pains have disappeared all together, a relief after many months of daily pain. Thanks again!

  • Chris

    Thiswouldn't download for me.

    Sue

  • It works for me... let me see if I can find another version...

    ..

    Try this link

    onlinelibrary.wiley.com/sto...

  • Hello Jemisavs5. I am on watch and wait. 6 months ago my specialist said I was eligible for the Flair trial in UK if I wanted to. I had already found this site by then, and I realised that my blood results were far too low to start thinking of treatment, so I said no. I then started taking turmeric tea - one teaspoon of turmeric, a few grains of black pepper, and a splash of milk. In the 6 months since I last saw him, the lumps on the side of my neck have almost disappeared. Is it the turmeric? Who knows, but I think it is. I haven't changed anything else. Always been on quite a good diet and not overweight. Am I deluding myself? Well I don't know, but certainly there has been a noticeable change since I started taking the turmeric.

  • How much turmeric is safe?

  • Curcumin has very poor bioavailability, most passes right through... you should discuss doses with your doctor, because everyone is different.

    Patients often don't understand the difference between tumeric and curcumin...but one is the active ingredient of the other

    Curcumin is a naturally occurring chemical compound that is found in the spice turmeric. The two words are sometimes used interchangeably, but the technical difference between the two is that turmeric is the yellowish powder used to flavor foods, while curcumin is a chemical contained within turmeric.

    ~chris

  • Definitely recommend accupuncture to de-stress. It helps me a lot. So sorry to hear about your numbers. Healing hugs being sent your way

  • The best thing you can probably do is to contact the Leukemia & Lymphoma Society. They are the largest organization in the country with information specialists who can help with information about your particular disease. Provide financing, lead you to supper groups, drug trials and specialist in oncology and hematology.

    You can reach them at Leukemia&lymphomasociey.org. I am a volunteer for them and have CLL myself. I have some similar readings as you and was diagnosed in 2011. I am 69 years old. My Oncologist told me a general rule of thumb is a 10 yr average life expectancy whether it was treated or not. Having said this it is an average with people living much longer or much shorter. Each individual is different. I don't know how old you are but my Dr. Also says this is a wait and see disease and may never need treatments. You should see your Dr. Often enough to evaluate each lab result. It's not just any one thing that determines if you need treatment in the form of chemo or radiation or bone marrow transplants. Some people have white counts of over 200,000 before treatment was considered. So things like if your anemic and your platlet counts etc. are considered together determinin when you get teated and what with. Hope all my info helps. The only other thing I can say is for the most part when you reach 70yrs of age they general will mandate that chemo be started.

    PS the Leukemia & Lymphoma Society has videos on line and range through a lot of topics as well as videos of people with blood cancers such as CLL, ALL, Meylomas, and others.

  • Sorry about some of my misspellings. I typing this on a smart phone and I'm not use to it as far as predictive typing. I think you can get the meaning of what I typed without my retyping it.

  • 10 year survival rate from starting treatment or does it include wait and watch?

  • I wish I knew, but it's not in our hands. I hope you are seeing one of the CLL specialist at a big research medical center. I go to OSU The James Cancer Center and I had more tests due to what appears as an unexpected rapid progression of my CLL/SLL since Nov. I also am mutated Trisomy 12 but my spleen is very enlarged and some of my enlarged lymph nodes are 11cm x 5cm...big! I return. April 11 to decide on treatment...ibrutinib, FCR, etc. My luck has run out. I was diagnosed 3 years ago. I am currently 65. Let me know if you must have treatment. Good luck.

  • I am being followed at CLL research at North Shore Long Island. Dr. Rai is my doctor. Tomorrow is my appointment. I hope my numbers slow down.

  • Let us know. But it's not just numbers that matter.

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