CLL Support Association
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Bone pain and CLL. Are they related?

I was diagnosed with CLL April 2016. As I only have Stage 0 at this point, doctors don’t seem so concerned. I go every six months for blood work. Recently I’m having much pain in my arm, joints, knee and especially right ribcage. Can this be caused from the CLL? I have fatigue and night sweats and just don’t seem to have any energy to do anything but the necessities. This pain is really getting worse. Can barely used my arm or lay on right side because of pain in bones of right arm and ribcage.

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Hi Obxcll. I am no doctor. And others on this forum know more than me. But in my opinion, if you are experiencing persistent fatigue and night sweats and significant bone pain, then you are probably more advanced than Stage 0, and you should be seen more frequently than every 6 months. Also, be sure you are seeing a CLL specialist, not simply a hematologist who covers all blood disorders or an oncologist who covers all cancers.

Good luck!

kim

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I go to UNC in Chapel Hill NC. They are supposedly good cancer specialists. I’ll see once I see them again. I also agree that my CLL is more advanced. I do know from a recent hospital visit to ER with acute bronchitis that my WBC count doubled in 3 months. I appreciate your interest and response. Many thanks

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Other members may be able to comment about how well CLL patients are managed at UNC, but from what I've read, CLL patients living in your area of the States often find they need to travel a few states away to find a good CLL specialist. CLL is a very heterogeneous illness, so we can really benefit from seeing someone who sees hundreds of CLL patients and can devote sufficient time to keeping across the fast changing developments in CLL management. CLL specialists are far more likely to have seen and successfully helped a patient with a rare complication of CLL than a specialist that looks after a whole range of different cancer patients and struggles to keep across new developments in vastly different cancers.

Neil

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Thanks so much. Yes I live in a remote area. In fact Chapel Hill is almost 4 hours from me. I will check online for CLL Specialists. I totally agree with you.

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That’s great info. Thanks. I see they listed Duke which is a cancer hospital used by people in my area. Thanks again for your help

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Duke has a good CLL program, as well as researchers...

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I’m going to UNC but may transfer to DUKE

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TheCLL Society list of doctors has links to both the ACOR CLL list and Dr. Sharman's list ( the NHL-CLL site). His list is somewhat dated, so it is worth checking against the other two, as some of the people he listed have moved to other locations.

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AussieNeil, Do you have a list of CLL specialists for South Australia?

As I am pretty sure my specialist is a haematologist dealing with bloods.

Thanks CopJen

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The lists are international and do include South Australian specialists.

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kornkamper spoke in his post about CT scans. How many is too many, Neil?

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It depends on the age and capability of the scanner. Check the series by Wayne Wells referenced in this post: healthunlocked.com/cllsuppo...

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cllsociety.org has Doctors in Australia listed and they have a link at the top to the ACOR list which also lists CLL doctors. Both are patient recommended lists. I don't know Australia well enough to know locations related to where you are. I know that Con Tam is a big international name. Asking his office about someone near you might be a starting place.

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You are more than helpful, Neil. Thanks from all of us. Carole

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Hi Obxcll, In my case the bone pain is definitely related to the CLL. The CLL is all over my spine, penetrating the soft tissue. I also have 3 ribs that are broken and caused from the CLL. If I was you I would go see a CLL specialist asap. They should do a CT scan and a MRI to see what is going on with this pain you are having. Best wishes to you. Rob

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Thanks Rob. I have an appointment with a specialist the end of February if I can last that long. I’m in excruciating pain today. Sorry to hear you have this painful disease as well. Best wishes, Dolly

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Dolly dear, so sorry about yr bone pain

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Hi kornkamper, 2 years ago, 4 months prior to being diagnosed with CLL, I had an awful cold and cough, the coughing was so severe, I fractured a rib (right side). My inept PCP told me to take tylenol extra strength. UGGH. Then, after the diagnosis, (where I had to find a hematologist on my own) I fractured another rib by merely reaching across the coffee table! In the event, after connecting with this wonderful, supportive group, I am seeing a CLL specialist at Memorial Sloan Kettering, and am firing my PCP (after she provides the initial one time referral). ;O)

Irregardless of our individual health situations, we all need to do research on our own --thank goodness for the internet, where we're able to share information!

Thanks so much for your post --- it encouraged me and confirmed the need to seek a CLL specialist!!!

cheers, Emma

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Yes, to ding our own research! And big hooray to whomever organized this website???? I'm new to CLL and "waiting and watching" isn't enough for me. I need a diet and a plan...does the "N of 1" book by Sabin make any suggestions worth trying? Have you heard about his remission and how he obtained it?

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no I haven’t heard of the book but will look it up. I do have The Gersen Therapy which offers a strict diet of smoothies, veggies and other things. Very interesting read but rather unrealistic eating up to 20 lbs of veggies daily even though you drink them.

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Thx fr yr response. I need it. I have read Gerson thearapy, which is a good start. Iodine, vit D, etc.

You are in pain now, so some suggestions from past readings are:

To open up the NRF2 pathways in yr body so you make billions of antioxidants to self mend yr pain. There are three ways to open NRF2 paths. 1) Strong Turmeric/ green tea solutions on an empty stomach, (where ginger makes it palatable, ie without the gyrating dizzy hungry like response in yr stomach) 2) Fasting..I can't fast well, don't really want to lose weight, so intermittent fasting works. So I don't eat from 8 pm til 2 pm the next day, drinking coffee, tea and zero calorie drinks like essiac. You may need to adjust against the caffeine/ hungry feeling, so keep some RAW tangerine sections on hand to pop down as few as possible to keep yrself feeling balanced. Then 3) Exercise. And I mean bust out a sweatie 600 calorie lather of a thermogenic workout, popping tangerine sections if need.

Then at 1:45 you drink the strongest steeped green tea solution you can make, still on that empty stomach, and at 5 mins to 2:00 you start eating RAW fruit, salad with virgin unfiltered olive oil, etc.

ENZYMES. Are in raw food are as important as vitamins..you want to break yr 16 hr fast with raw foods cuz the fast is about allowing the enzymes you have left in yr body a chance to work on the.fires burning in yr bones. Digesting food uses up the enzymes we need to leave free to cure ourselves. So we can stretch the function of the fast by eating raw cuz raw food has the very enzymes in it needed to digest itself.

I did this yesterday cuz I had a dull low back pain, and I feel fantastic today. And I want to share my painlessness with you.

Lots of love to you my precious, Dana

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Wow! Thanks Dana for the abundance of great information! So impressed by your mail. Seems you’ve really done your research! I’ve been thinking about turmeric and you just confirmed it. You are an awesome amazing woman. I can tell already. All the best to you and so happy you are feeling better. Thanks , Dolly

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I can back my pain relief program displayed above from the various sources...NRF2 I got online from the science artcles appended to the marketing of Protandim, which is Turmerc, green tea, bacopa, aswaganda?, and ginger. As always, RAW and fresh ingredients are better than pills.

Howell ? wrote a book on enzymes. Another guy wrote a book on Cat experiments and how long they lived was proportionate to their raw diet like wild cats eat raw mice, vs domestic cats eat cooked meat from tins and dried kibble made from corn and wheat that are round up ready...go figure!

Another important reference for the above is Beyond Aspirin I forget who by somewere in Vermont. All about Cox 2 expression and all kinds of clever anti inflammatory stuff...I admire their intelligence. To summarize that book, green tea, turmeric and ginger work synergistically to do what aspirin does without burning ulcers into yr stomach. Superfood Aspirin evolved from willow bark, and then they had to improve the shelf life, etc. Tulsi, rosemary, holy basil, ginger, turmeric all have anti inflammatory synergies that exist and in varying proportions between each other, as pepper activates turmeric, so I plan to use those fresh ingredients in an array of patterns in future, but for YOU NOW, I suggest green tea, turmeric and ginger on an empty stomach as above...must go out now and pump out a 600 calorie thermo genic workout to get those anti inflammatory ingredients out to every cell..

Nutritional yeast , marmite and lecithin in egg yolks, vit b, sets the lymph to pumping and cleaning itself along with the exercise..

Tell me how it works...Dana

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I used alot of the information from 'Chris Beat Cancer' online to develop my diet and supplements plan. He includes alot of research and has lots of information. I needed to taylor it to my needs though. I feel more hopeful that I am doing what is in my power towards my health as I am watch and wait too. So far, Ive seen some positive results. I've found so much good information and support on this site also!

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Very helpful. Thanks. Dolly

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Just bear in mind that Chris Wark did not beat his cancer through his dietary changes, he had his cancer tumour surgically removed and then refused adjuvant follow-up chemotherapy that would have slightly improved his already very good survival expectations: healthunlocked.com/cllsuppo...

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Thanks so much for sparing me the time. However I do believe some of his diet suggestions may be of help as I’ve read from many resources that raw vegies may help . Certainly can’t hurt. Much better than my chips and pimento cheese. Lol 🤣🤣😂👍

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Yes, I agree with you, but it is my hope, that my best self care nutritionally, might have a role in allowing the progression of my cancer to slow down. At the very least, I feel that I am keeping healthier and this will be beneficial to deal with what is ahead. This helps me cope with watch and wait and not feel so hopeless.

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Thanks Dolly, Good luck and keep in touch. Rob

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I was diagnosed eventually because I thought I had arthritis. I used to say I felt like I had a cold in my bones. Hope you feel better soon.

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Well then that more than likely explains it. I went to an orthopedic doc and he did an X-ray of my knee because I. Hold barely walk. There was no fracture or arthritis. Thanks for your message

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It used to come and go though...does yours?

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When I say come and go, I mean in weeks not days.

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Yes mine comes and goes for weeks.

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Like you, I had that, sweats and belting infections on and off. One consultant dismissed everything but got sorted. Sounds like you're struggling.

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I am struggling. I just looked at my last three tests results and wbc has doubled and looks like monocytes, neutrophils, lymphocytes have all decreased significantly from Aug 2017 to Jan 2018. Is this a bad sign?

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I meant monocytes are lower, and others are much higher

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I'm no Doc but you're struggling and you need a review by someone qualified. If you don't get that, you could think about getting referred to see someone else?

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Yes I definitely will. Thanks

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Fingers crossed for you Dolly x

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Are you looking at percents or absolute counts? Also look at the aLC (absolute lymphocyte count) not the WBC.

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Yes definitely. I pray it goes away real soon

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Hello Obxcll, I have had soreness in all the areas you are talking about. It seems to come and go with me, I have worked construction all my life and and am no stranger to aches and pains, they usally go unnoticed. However I seem to notice these ones not sure if its because I am more aware and conscious of my body or just worring more. I have noticed over that last 8 months or so that whenever I have worked to much and and dont stop to rest or am stressed about work and life in general, that seems to be when I notice it. Today I have hit a wall with regards to fatigue I have been on the go lots and working lots and its like my body is saying stop and rest, although it looks like I have some snow shovelling to do when I get home tonight. I am currently at stage 2 no night sweats and but some sore lymph nodes in my neck and groin. I find trying to keep busy,active and not dwelling on my condition helps alot. Not sure if any of this made sense but I hope you can take something from it. Have a great day and best wishes

Chris

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Yes mine seems to come and go but my knee and ribs have been painful for about 6 weeks. I suffer from daily fatigue no matter how much rest I get. Try to slow down and find someone to help you with that shoveling snow. You can’t afford to get ill. Your immune system can’t hand it. Take care. Best wishes. Dolly

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I am at a zero level as well for nearly four years now. Fatigue is always in the background, night sweats often and my head aches are always there. I get random joint and body pains but that's just age-related probably. Just continue to stay active , stay up on your check up schedule and keep your head out of the internet.

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Yes I agree about keeping my head off the Internet. Seems I hear more negative than positive when I research.

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Ok. "Keep yr head out of the internet" I understand. Study up some, but don't over work it.

Im new to CLL, stage o, but am wondering what is the recommended diet??? Regular exercise I'm figuring is a must cuz it is a stress release...

Regular nutritional yeast cleans lymph. I've been interested in diet for years, and do my fellow CLLers know about this?? Has any body been taking nutritional yeast regularly here..has it helped? All of those sore lymphs about...here???

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My dad recently had bone pain in his shins and shoulder joints, which was CLL related. Are you looking pale, or slightly jaundice? If so, speak to your specialist ASAP. You will need to be seen before the end of February just as a precautionary measure. Better to air on the side of caution.

Gary.

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So that's why I'm not sleeping, very good information. I've been dealing with this pain now for 5 months in my right arm shoulder and left rib cage, I think I need to deal with someone else beside the Va hospital. They are only doing blood count.I was approved by the Va to receive 16 ig, treatments 2yrs ago. I have only had one...

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I agree that you should go and see a specialist asap. I'm not a doctor, but with all those symptoms, it seems like you are overdue to be in treatment. No bone pain, but I've had "wandering" joint pain, and before I went into treatment, I was getting to the point where the fatigue was getting pretty severe. New treatment options aren't that bad, but you should see a specialist to figure out if you have any particular mutations that would dictate treatment options.

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Hi Obxcll, I am wondering the same thing. I have been seeing many different types of pain md’s, have had many different treatments and drugs. NOTHING has helped my neck pain and headaches. Now I’m starting to have a bit more pain in other joints/bones. My hemotologist always tells me anything I ask about is NEVER associated with CLL. I’m beginning to wonder. My pain is increasing, nobody can figure it out. He is not a CLL specialist. I’m wondering like you. I’ve been feeling like the pain MD’s have been sending me to a psychiatrist because they think it is not real and all in my head. I’m at a loss. Not giving you answers but just wanting to say you are not alone.

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Have had similar experiences with my doctors --- and feel as though I'm being passed around like a bag of peanuts! They just shuffle me around because they don't know what the dickens they are doing! Other than collecting $$$ from me and insurance. Cha-Ching, Cha-Ching, Cha-Ching.

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Sounds so familiar. Not glad it happened but gives me a sense of validation of what I have been going through the last 12 years and having no answers.

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I was just told in an email from my oncologist that it’s degenerative arthritis and nothing to do with CLL and for me to take Motrin every 6 hrs.

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hmmm, interesting. Motrin?! Is that helping you at all?

Have decided to visit a CLL specialist. My current hematology oncologist is not helping me at all, and have decided to "fire" her.

I experience daily hot sweats, as though my entire body is a radiator! It's debilitating. My current dr. says there is "nothing that can be done" ---- which is crazy! Why should I suffer like this?! I broke down in tears.

Have been researching physicians on line, and checking their patients' reviews.

Don't give up! WOW you've been suffering for 12 YEARS? WOW!

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Emma, dear, I hate to hear that you broke to tears. Im new, and when the night sweats come like a radiator, does a cool bath help? Obviously something goes wrong with our thermogenesis, which must be regulated by something in our blood??? Has anyone tried a cool bath at that stage?? They do cool baths for people with runaway high fevers.... ?

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I get the same answer from my hematologist everytime I ask about a symptom it's never related to my cll

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Then he will say something this is a good thing like I actually want something to happen. Of course I don’t you dumb shit but I also want to be validated for my day in and day out pain!

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Nobody looks after YOU as well as you do. What you wrote is insightful...I wonder if there is a CLL specialist associated with this clever website. I see a survey for another disease popping up when I enter this site, I do a survey for CLL here for free... I'm new and am looking for a specific diet plan???

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Yes I could use a diet plan myself

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Hi Obxcll and DanaNicholson,

I see you’re both new here, and are looking for diet plans. Sorry I can’t help with specific diets, but there are other things that can help us on our CLL journey.

A couple of years ago, I gathered together suggestions for "things we can do". They’re not complicated - just simple things based on the experiences of many folk on this site.

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Not everything will be relevant to you, but you might find some useful suggestions here .

best wishes,

Paula (in England)

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Yes. Most likely related to CLL. most people with CLL will experience these symptoms. It does sound like you are more advanced than stage 0. But a CLL specialist will be able to determine this.

Best Wishes to you,

BC

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Hi Obxcll ..

I was diagnosed with CLL

July 9th 2013..my wbc was 36,000.....had been in bone pain since yr 2000...pushed myself working as management in housekeeper in retirement home...I switched to sandwich maker in subway restaurant. ...until I could no longer deal with pain /tiredness /nite sweats thru out the day/not much appetite ect...my dr sent me to specialist in June 2013 ..within 3 days I had a bone marrow biopsy. ...CT scan with constrat/without constrat too..Within week I was dignosed with CLL Stage 1...

In 2017 I'm stage 2...in soo much PAIN everywhere. ..my lymph nodes swell in my neck and stomach on and off but not enough for surgery. ...

I also been tested for fibromyigia and also hav degenerative spinal stenosis...

So I feel you...I live in a small farmers town in Illinois. ..I hav to travel every 6 months 30 miles to state of the arts DECATUR CANCER CENTER. .WHERE I HAVE A VERY QUIFIY SPECIALIST WHO IS HIGHLY RECOMMENDED. ..

I've learned you hav to try to enjoy life with a grain of salt ..meaning do little at a time. ..take your time...bcus STRESS is your enemy. .

My wbc is 79,000 in Oct 2017..

Waiting for my next appointment in Mar 2018..

Good luck and plz keep us updated as well. ...God bless

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I’m so sorry to hear how I’ll you are and how high your wbc count is. Blessings to you. Keep in touch, Dolly

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Hello Separated..., im new and it's nice to hear from an old salt like you..you say yr wbc is 79,000...what units? My wbc is 19, I have no idea what unit yet. Seems like we come from different planets, but may be just a decimal adjustment? Does your wbc only go up? Have you ever seen it come down in all your years of CLL? Have you tried standard cleanses like essiac tea? Do you take nutritional yeast to clean yr lymph? Or do you just believe "them" when the orthodox medicine gang say there is no correlation between diet and cure? I can't just watch and wait. I feel good when I have a self help plan? First plan I'm getting from this site is fid a CLL specialist and what about diet and exercise?? Thanks for being there long timer! You are my rock!

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As explained to me, 19 would be 19 WBC per cubic millimeter and 19,000 would be WBC per liter. I think it was Aussie that explained that to me. I am an engineer so I think in terms of 19K which is thousands. Depends on USA or outside US measurements. I had same question, very normal question. Feel better? Doctors use WBC doubling as guide for CLL progression. The WBC growth is not linear, but exponential. The higher the WBC the faster is raises. I took my WBC test results and calculated that I had 1.33 years before treatment from time of diagnosis. Doctor smiled and reminded me of doubling criteria, be in months, not years.

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Big D used to be a nickname of mine. Exponential eh?? So you only have 1.33 months?? That's no fun! So at stage 3 or 4, they may opt to give us ibriinib?? Which makes you feel better quickly, but only gives you about three years after that. Is that how this goes? Did you see/ hear the BBC broadcast with Dr Peter Hilman in Leeds, UK? 4.5 to 10 is the normal range for WBC. So you have had three tests and you have extrapolated your curve? I've had three tests in the last week cuz the docs can't believe their eyes, and it went from 19.5 to 20.4 and back down to 19.6. So I've seen it go up AND down. Beer made it go up, so I stopped again, and it went down. I feel like experimenting to see what makes the WBC count go down. It must have been tried before. Apparently one or two people have managed to bring their wbc back to normal. Have you read any of these accounts?

How much green tea extract and turmeric per day? Or alternating days? 4g per day seems high?

Thanks Big Dee, Dana

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Hi Dana

Well Dana if you knew me you would probably laugh at the Big Dee nick name. I have had that nick name for years because few people can spell or pronounce my name.

Back to the WBC raise, it will not be 1.33 months hopefully, but under a year start to finish. I am tested every month because my WBC is raising so fast. I go again this coming Monday. Yes 4.5 -10 is normal, some say 4.5 to 11.0, would settle for the 11.0. In spite of the doom and gloom, I feel great! I don't know that the diet can "cure" you, but a healthy diet will go long way in preparing your body for future CLL treatments. I have already had my blood tested with different treatments and doctor say not successful. I would suggest discussions with your doctor on turmeric as it can cause anemia and thins blood as well. I know a guy who ate nothing but tropical fruit + water for 45 days, had non-hodgkin's lymphoma . He has been clear of non-hodgkin's lymphoma for 10+ years. may you be blessed.

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Hi Big_Dee and Dana,

The scale for measurement of ALC and WBC varies around the world, although there are only two in reality. I'm in the UK and might have a count of 19, if you were in the USA that same count would be reported as 19,000. It is very simple, but totally confusing until someone explains it.

Many things can make your WBC or ALC fluctuate, such as illnesses and infections and potentially the environment around us (it always has 'stuff' in it). The important thing with CLL is the trend of your counts. By the way I only mention WBC (white blood count) and ALC (absolute lymphocyte count) as that was what you were talking about, other things such as Neutrophils and Platelets play a part in decisions on your personal treatment journey.

Hope that helps a little, sorry I should have said welcome to our community. I hope you find answers here that help you. However, remember we are patients and carers so we cannot offer medical advice, what we offer is support based on our personal experiences.

best to you both, rob

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hello Rob

I do not know if it makes much difference whether per cubic mm or liter other than it sounds great when someone says my WBC is 19 and your is 19,000, Ha Ha. Being an engineer I would assume the 19,000 would be more accurate than per cubic mm due to percent of error with larger sampling. However, I am sure nobody had one litter blood sample taken. Although they did take 16 vials of blood in one day because they messed up the testing and needed more samples, Ha Ha. All of my WBC are in cubic mm here in USA.

The prognosis is so widely different from CLL to CLL patient that it is not advisable to circumvent your doctor. A lot of these OTC remedies can have detrimental effects.

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Hi Big_Dee,

While I can’t comment on the specific I do follow the 19000 vs 19 seems more accurate. However, that could be deceiving if the 000 part is always 000 or the measurement tool is not that accurate. I’ve seen it in the past where a temperature was reported as xx.yy yet when checking the input data it was inly an integer!

Just depends I guess.

best, rob

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Naaa! No calculating life span. I started getting scared when I read what you said. Almost calculated my own. We don't know...and there is always hope.

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Ha Ha Dana

Yes it does sound somewhat morbid to calculate time to treatments and possible demise. The doubling of WBC is common unit of measure use by doctors for CLL. I feel great, but would like some idea how long I will be able to do things I need to do to insure my wife's financial and emotional well being. I am also caregiver with my wife for my mother-in-law. This gives me satisfaction as well as keeping busy as my wife works full time to obtain health insurance as I am retired. You absolutely correct, there is ALWAYS hope, may God bless you and walk with you.

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Yes, the unknown timeline is a concern though it is no different than it was in the free life before diagnosis. We have never known the end date. I take relief from realizing that nothing has changed. But the diagnosis is the kick in the pants that our projects need finishing, we must complete our monumental marks, like write a book/memoire. Decide on the Will. All the things I've always had on my job list need to get done. So I'm more productive now. Yes I should consider how much time will I be lying in a bed wasting away, and how much will that cost. Am I covered? Thanks for opening my eyes. Dana

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My wbc keeps go n up about 20,000 every 6 months..my oncologist specialist said I will b on treatment end of this year or middle of next year..problem is I'm not do n chemo..I'm want alternate treatment. .but I'm on medicare and Medicaid?

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I’m sorry to hear of your progression and know you must be very concerned as I was when I read about your wbc count increasing in a few months. I was diagnosed in 2016. At the time my wbc count was only 11,000, and now almost two years to the day is 26,000. Not sure if that is a good or bad sign, however I’m always concerned when I see it rising. I’m at Stage 1 now with swollen lymph node under one arm and slightly enlarged Spleen. This has frightened me. I am extremely fatigued, nightsweats, and bone pain. No treatment was suggested at this time. Like you though, I don’t want chemo. You are in my thoughts. Keep in touch.

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Yes let's keep in touch often

I go to my oncologist Mar 22nd will knw more then...prayers always

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Good Morning Obxcll

I was diagnosed Aug 2017 and was initially told I was in stage 0 to low 1 based on my WBC and some swelling in neck, arm pit lymph nodes. My personal physician diagnosed me almost right at the onset of CLL. I had drenching night sweats and difficulty sleeping. All that is pretty much gone now. I currently see a hematologist and oncologist. My personal physician has 18 leukemia patients in his care and to certified to do BMB which he has done hundreds. At onset of CLL, was told everything looked rosy with long W&W and possible remission. Now 5 months later and several blood tests later with WBC doubling every 4 months, I have blood tests monthly and doctors are very alarmed at fast increase in WBC. I have very high pain tolerance so I don't pay a lot of attention to pain and feel pretty good. I am 70 years old so don't expect to be a ball of energy, but very active and exercise daily as well as work on houses. I do feel that I am getting good care and do not feel I need to see CLL specialist because it is not like my doctors do not have CLL patients. I wish you the very best doctors you can find and blessings in your journey.

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Thanks so much for taking time to write. Wishing you blessings as well. Thanks for the support

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Hi Obxcll!

I welcome you and don't have anything else to share with you that you haven't already heard from others. I thank you for sharing the bone pain info however, because I hadn't heard of that symptom before. I was diagnosed this past October with stage zero. I'll be going back in March to get my labs done. I do have occasional fleeting pain in my shins and have noticed my shoulder pain increasing. I didn't make a connection to the CLL. Thanks to everyone for sharing. I am very grateful for this great group of caring people. My best to you Obxcll, and everyone else on this thread.

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Thanks Michelle and wishing you blessings.

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Obxcll, I'm not a doctor but you have classic B symptoms if you have night sweats, chronic fatigue, and doubling of your white count in three months. The bone pain is probably the CLL. Please, please get to a reputable and highly regarded CLL specialist ASAP. This condition can be managed if you get the right treatment at the right time. You should also get a FISH test; a CLL specialist will automatically order this for you (you won't have to ask for it). Remember while all of this is going on, your immune system is also taking a hit so you're less able to recover from everyday illnesses. There's no need for you to be suffering like this.

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Thank you for this info claire, so we can keep this under control can we? What diet do you follow? FISH test? Good to know, thx, Dana

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Thanks so much Claire. I had no idea. I’m not familiar with B symptoms. I’ll have to check it out. I have at a FISH test but it’s been over a year ago. I’ll definitely get to my Dr ASAP. I’ve noticed I get sick easier and it lasts much longer than illnesses used to before CLL. I really appreciate your input.

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Please let us know how you're doing and what your oncologist says. Best to you.

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For your immune system, CLA, conjugated linoleic acid on top of vit c of course, is good. Dont buy pills, food is the best. Can u get yr hands on raw milk? Don't heat above 115 degrees Fahrenheit or you kill the enzymes. Raw milk has CLA ,factor x, and CLA, for immune. Extra virgin olive oil has CLA, too, best to find unfiltered, cold pressed, and use it in salad dressings.

Did you see the article someone posted here about vit c intravenous followed by tablets? The article said cll responds quite well to vit c. I'll have to look about this sight to find the benchmark to the article.And keep up on zinc preventatively, lots of zinc in clams.

Good luck, Dana

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Hi Dana,

I would recommend extreme caution with regards to anyone with CLL taking conjugated linoleic acid (CLA), because human studies have been very limited and have provided conflicting results. Of great concern is that CLA has been shown to boost immune system response in animal studies by boosting lymphocyte production - and with CLL that's the last thing we need!

Also, I hope you can find that reference to CLL responding quite well to vitamin C, because I doubt that is correct. I've looked into the scientific evidence behind such claims and if vitamin C can help those with CLL, I think it will be limited to a very small number with the right CLL genetics. Certainly I'm not aware of any verifiable cases where vitamin C has helped CLL patients.

Neil

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I don't take CLA pills. I drink raw milk and unfiltered, cold pressed extra virgin olive oil to fight flu.

GLAD YOU REFER TO SCIENTIFIC ARTICLES, SO OFTEN. ONLY WAY. I wish I could test after that CLA to see if platelets ARE up.

I have that Vit c article in an email. Is it safe to put my email here? I need you to read it cuz there is a down side to C. but we need c with iron for hemoglobin for oxygen. I got the vit c website from this forum. Is it possible to search in here?

Searching for science is my relief and hope.

Dana

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There's a huge difference between gaining essential vitamins from healthy eating and from high dose supplements, particularly when we don't know whether high doses can help or worsen our health. Shortly after my diagnosis, I was given well meaning encouragement to take over the counter supplements to boost my immunity. That ended up with a discussion with my specialist about why my liver function test results skyrocketed from what I was taking and advice that there was no way that I could boost my immunity through taking supplements. (It took several months for my liver function test results to return to healthy levels.) I have since found my specialist's advice to be a very good guiding principle, because time and time again, when I have heard about a supplement that will boost my immunity, I find that if there is any good evidence regarding the claim, it is lymphocyte production that is boosted :( .

Neil

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Did you get the vitC article attached below? Can't wait to see what u say, Dana

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I suggest research on milk whether raw or not. Campbell's "China Study" says the caisin in any milk product promotes cancer. Interesting, controversial book worth checking out. I don't see organic mentioned in this nutrition discussion, hopefully because it goes without saying that sprayed food grown with pesticides Should be avoided along with sugar and all processed food. Thanks to all for the sharing! So good to know we are not alone!

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Milk and olive oil are high in CLA

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OMG! I did it. HERE IS THE VIT C ARTICLE. to be given intravenously and follow up with tablets.

ncbi.nlm.nih.gov/core/lw/2....

Dana

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That figure is from a paper exploring the effect of vitamin C on human leukaemia cell lines which are NOT from the lymphoid cell line from which CLL develops. There are myeloid and lymphoid stem cell lines and the study was restricted to myeloid stem cell lines. So unfortunately the research isn't relevant to CLL.

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Aha! And thank you. Do you take green tea extract and turmeric? Dana

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Yes, for 9 years, but I don't recommend it be done without careful consideration because in brief:

- The supplement industry is unregulated in most countries and basically you don't know you are getting what you pay for unless you can find a reputable supplier: healthunlocked.com/cllsuppo...

- Any CLL treatment puts selective pressure on CLL. Clones with copy errors that make the daughter cells less susceptible to treatment survive and CLL can become resistant (Clonal evolution). That's in part why Watch and Wait is still the preferred 'treatment' option. There haven't been any studies into whether CLL can become resistant to green tea extract and turmeric, so we don't know. Active ingredients in both trigger apoptosis in various ways, which may make resistance development less likely, but we just don't know...

Neil

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Thank you for explaining. So it really is watch and wait. Continue life as normal and the food too.

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Hello, and I am so sorry you are in such pain! I was diagnosed a few months before you and I too live in NC. When I started looking for a specialist I found there are two on Dr Sharman’s list for NC. Dr Ryan Jacobs at Levine Cancer Institute in Charlotte, and Dr. Danielle Brander at Duke in Durham. Greensboro, where I live, is halfway between the two. I chose Dr Jacobs in Charlotte because the drive is easier and my son lives in the Charlotte metro area, so I have a place to stay if I need to. Also, I was impressed with the fact that he was trained at MDAnderson. I drive 95 miles each way, but it is well worth it. Dr Brander is very well thought of in the CLL community, and was recently featured in a couple of the videos that we see in the forum. I like what I have seen and heard about Dr Brander; but I like Levine better than Duke because Duke is such a large facility. But I am sure you would get excellent care with Dr Brander.

Hope you get seen soon and can get things sorted out a little better.

BeckyL

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Oh Becky, thanks so much for writing. Prayers you beat this thing also. Blessings Dolly

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Hello obxcll, check out the very recent BBC broadcast about the Dr Peter Hilman from Leeds, UK who has dicovered a drug, Ibrutinib, ?spelling? It is a stage 3 -4 remedy/ recent break through that brings relief in days, may even have brought the patients back down to stage 00??

I'm interested in yr diet..what changes made thing worse and had u been on an exercise diet before???

Thanks, Dana Nicholson from Antigua

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obxcll -

Joint pain can be indirectly connected to CLL as a side effect of some antibiotics - fluorquinolones, such as ciprofloxacin, levofloxacin, pefloxacin, and norfloxacin - are known to cause severe tendon problems in athletes:

ncbi.nlm.nih.gov/pmc/articl...

"Fluoroquinolones display a high affinity for connective tissue, particularly in cartilage and bone. "

What to do about it, then? All I've seen is recommendation for anti-inflammatory drugs and ice packs. I suspect the odd inflammatory signalling of CLL makes it worse, but I can find no proof.

Right arm and rib cage pain can be a symptom of gall stones. Usually it radiates from the right rib cage, around back, up the shoulder, to the arm. I just had my gall bladder removed because of this. I couldn't sleep on my right side. With the recovery from that surgery, and lack of exercise, now my left knee is hurting like crazy again. I had torn the ACL and meniscus a couple of years ago. I ice my knee.

For others with LEFT shoulder and arm pain: I was getting left shoulder, clavicle, and arm pain for awhile. I was convinced that something was happening in the lymph node behind the clavicle, until I realized that in my fatigue, I would put my left elbow on the desk, and rest my head in my hand - stretching everything too much. It's a hard habit to break. I'm right handed. So a similar thing may happen to lefties. The pain shows up where the tendons attach - but may feel like it's in the joints, too.

For all with chronic pain - watch out for the good days without pain! That's the day you may overdo activity and exercise, and injure yourself. Do light exercise only! It's better to do a few repetitions several times a day, than a whole bunch at once. Best to do ridiculously small numbers - 3 leg lifts, 1 or 2 sit-to-stands, 5 marching in place at a time several times a day for a week or two, and increase gradually, especially if you've been in bed or sitting for a long time. Don't go off on long walks after days in bed or days sitting.

Do exercise, but don't overdo. Do gentle stretches. We all miss the days when we could hop and skip ...

Also, watch out for reaching for things on high shelves - you can injure tendons. Get one of those reacher tools:

amazon.com/RMS-Rotating-Mob...

=seymour=

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Very helpful Seymour. Thanks

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