CLL Support Association
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Watch and wait... but for what?

First of all, much respect for all those not so lucky as me. I've been W&W for four years now.

Every time I see the consultant, I'm so quick to get out (in case they notice some quirk in my bloods) that I don't really listen to what they say. I know it ends with "if you feel anything unusual, just come straight in"... but what exactly am I looking out for? Swollen lymphs, I guess. If anyone out there knows what else to look for, please chime in. I'm not going to Google it, cos that way lies hypochondria!

My only real concern is fatigue. It's gotten pretty intense, and I'm thinking I may have to give up full-time work early next year.

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Hi David

I look at it that my hospital Consultant has been on W&W since I was diagnosed in 2006. She won't be thinking about treatment until my circumstances change for the worse.

Meanwhile ...

My GP and I deal with any symptoms of my CLL.

Again, I am blessed with a good GP who actually takes the time to listen and tries to help me in any way that she can.

If she feels that it is better to err on the side of caution, she'll arrange additional blood tests to be taken.

If I feel the need to, I can always directly contact the Haematology Dept at my local hospital.

Don't worry about not wanting to know too much ... I have other 'issues' that affect my daily living so I made a deal with my Consultant in 2006 that I don't need to know all the details, and just to let me know if/when my blood counts start to show some concern.

So, my Consultant is on W&W ... and I pester my GP whenever I am ill.

I hope that you find a way that works for you.

ygtgo

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I really appreciate the reply, ygtgo

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With CLL it's very easy to fall into what I call the CLL SYMPTOMS VORTEX. This is a place in our mind where everything we do or feel has something to do with CLL! To get to the vortex ,we have to first board the CLL CRAZY TRAIN. Although I have only officially had the disease since January 2016, I have learned that the WATCH & WORRY phase can zap our emotional strength sometimes. Being human, we are somewhat analytical by nature and it is this overthinking about what's in store for us NEXT that sometimes weighs heavy on our spirit. The mind, via increased anxiety, can truly affect how our body feels physically. So our W&W time can only be endured well,I believe,if we spend our time learning about our specific version of CLL and focusing on what we can do in real time to feel physically,emotionally and spiritually better. So for me, I try to gather as much information as I can about my particular brand of CLL. Then I try to figure what can i do to possibly slow disease progression and overcome any true symptoms that I have. The symptoms for me have been: Fatigue,anxiety,dry eye,nerve related pain,border line platelets related anemia,increase urination,muscle pulls,node pains,crazy body temperature fluctuations and sweating. Thus far,through a dramatic shift in the way I choose to live my life that incorporates mindfulness,exercise and a complete overhaul of my nutritional practices,I have managed to overcome or dramatically rid myself of all of the symptoms mentioned above. Exercise(especially walking and jogging) and diet really help with relieving anxiety and the fatigue. Using moist heat,lymph massage and heat pads helps to lessen both the node,muscle and bone pains. I have found that doing yoga and martial arts stretching has really helped me with node pain,as well. Also reading what others say on this forum and then taking action has been a god send. I feel much more knowledgeable about my version of CLL and somewhat empowered. I learned about the importance of taking vitamin D,B-12 and folate right here! And I learned about having the extra comfort cushion of assembling a great healthcare team here as well. David--hope this helps you,somewhat.

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Hi jettyguy1 - I have dry eye too. Do you think this is related to CLL? And have you found anything that sorts it? X

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Restasis eye drops and plugs in the lower tear ducts can help.

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Thanks pkenn- will check these out.

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Hi Prudence. I absolutely believe that CLL may affect eye moisture. I can't back that up with any studies. But I do know that while it doesn't happen so often ,CLL can present in the eyes,I have read that on several CLL forums. But chances are that your dry eye is not CLL related. What's helped me: SYSTANE ULTRA Eyedrops. Just great stuff. Also Dr.Christopher's herbal eyebright wash. Resting my eyes and not looking at computer screen for hours at a time,without resting the eyes,helps. And wearing protective glasses when it's windy helps ,too. Having good lighting in your work area and at home. And I eat carrots,like they are going out of style. In the morning when you shower,try holding a warm moist wash cloth on your eyes for a minute. Some people will also gently stroke their eyelashes with the warm wash cloth,in downward motion. And keep your home moist. Hope this helps you.

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Thanks jettyguy1 - interesting. Will check those things out. I guess the warm washcloth has the same function as the eye bag, which is the only thing I’ve found that helps, but a bit of a bore and sometimes impossible when traveling.

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A warm wash cloth and washing your eyelids along the lash line (my specialist recommends baby shampoo and prefers Aveno) are the usual treatments for blepharitis, a build up of oils along the lash line. It can also be very uncomfortable. When I asked about CLL and the eyes I was told that anything that affects the viscosity of the blood can affect the eyes. My doctor mentioned central retinal vein occlusion as a possibility, though not a common one

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Yes I believe there are 2 sorts of blepharitis, anterior and posterior(?) My optician told me I have the sort where there’s no point in the eyelid wiping.

So is the viscosity of our blood affected then? Didn’t know that.

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From his comment my understanding is that it is possible. I didn't pursue the conversation. A good question for my hematologist.

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I got a linseed warm mask from Amazon for about 8 quid and Moorfields are pleased with the results. I use it every couple of days after heating it for 40 seconds in a microwave. I wipe the lashes and lids after with warm water and also night and morning when cleaning my teeth. It’s actually really nice to take time out to rest your eyes and it feels great when its done.

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Yes that’s what I use: a linseed mask. It does help, but I should really do it twice a day. Pretty impossible sometimes if you’re away from home with no microwave though.

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Jettyguy1

I am m66 dx one yr ago. I am keen to learn from u how to know / Learn more about my CLL? As u write that we can take action to slow the progression. What actions you took and did u experience slowing down of your cll progression?

I greatest desire is to have VERY LONG W&W, so that I may never need any treatment.

vinnet

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Vinnet. You'll learn a lot about how to live with CLL,by reading certain CLL forums and being open minded to some of the things suggested by the very smart and savvy CLL patients who post right here! I am not experienced enough to be an authority. But In two short years,i have discovered quite a few things,that seem to be working for me,personally! Everyone is different in the way their body may react to any kind of treatment,whether it be instituting a nutritional regimen, to undergoing some sort of medical intervention. Since we can't even get highly skilled hematologists to 100% agree on what treatments are best for versions of CLL,it's hard for me to say if what I do will help someone else. The reason is that I eat an incredibly healthy diet that specifically is medicinal in nature and geared specifically to reducing certain health problems that I have had. Once I got rid of acid reflux,high Blood pressure,high cholesterol, high glucose,food allergies and lowered my hay fever reactions and reactions to house hold allergies,amazing things happened health wise for me. But its all open to interpretation,as to whether I have somehow slowed disease progression. In all honesty, upon diagnosis, I was extremely fatigued,was sweating profusely at times, was breathless,had decreasing platelets,had larger nodes in my neck and swollen tonsils. I felt anemic! Two years later---my nodes are smaller,I have no fatigue whatsoever and I am jogging 3 miles. Initially after losing 45 lbs all of my blood values improved dramatically--white blood cell counts went down for nine months straight. Then they gradually creeped up. But one great thing my platelets which had been spiraling downwards for a decade actually became stable. Now ,I do technically,according to my CLL specialist have a complex karyotype. I am unmutated trisomy 12,zap-70(supposedly..because one doc says definitely,another says maybe) and I have a BCL gene translocation on 18/14. I have supposedly had CLL according to my docs who have reviewed my Blood tests as far back as 2012,but I managed to avoid official CLL diagnosis until January 2016. ( previously doctors thought i had ITP and that my body was attacking my platelets and I had inconsistent raises of WBCS that bounced to above normal and then back to normal.) More likely that I had a pre-CLL condition at the time, according to one doc,that no one caught,because I really had no B-cell symptoms) So the bottom line---my CLL specialist just told me that my CLL is acting Indolently. In my opinion it is too early for me to tout that I am slowing disease progression---ask me that question in five years and I'll give you a honest report. But I feel great...work 60 hours a week and I have no fatigue or night sweats. I have no infections. And i was prior to going on a macrobiotic diet, jogging and being more mindful,getting all kinds of infections. My ALC was 10.4, 22 months ago....in October 2017 it was 19.2. And my ALC stayed virtually the same as it was six months earlier. So for me, doing the macrobiotic diet,drinking green tea,taking vitamin D,B-12,jogging/walking and reducing gluten seems to be helping to reduce CLL symptoms somewhat. It's all open to one's interpretation,if that would suggest a slowing of disease progression. In my case my IgG measurement is 1400 presently,up from 1380 or so at diagnosis. Perhaps just "constitutional" dumb luck with no guaranty that my antibodies even function at their maximum potential..but still kind of interesting.

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Jetty

Thx for a detailed response. I feel very encouraged to note that you are one of us with CLL and have NO FATIGUE.

While each CLL is unique, it still gives me hope that I can try to take steps to live a good qol. I feel very low and taking rest does not help.

Can u advise how much vitD, vitb12, GreenTea you take?

vinnet

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Vinnet. I take 2500-2900 iu of D daily. B-12 200mcg and I drink 2-3 cups of green tea daily. With the green tea most people take supplements in an effort to truly get a clinical response. They are getting way way more of the ECGC than i wish to get! In my case I drink green tea to support gum and teeth health and if it even minutely influences my nodes and blood values,that's fine with me. I like the taste of it and the caffein boost. Again--I eat an extraordinarily healthy diet and I weigh 140 lbs at five foot nine inches,down from a high of 192lbs,two years ago. It is the exercise and the healthy diet that's getting me results. The vitamins are the cherry on top of the ice-cream. they are enhancing my results for sure. My point is....anything worth doing is worth doing right. Just taking vitamins or supplements are a waste of time ,if you are 50lbs overweight,eating a horrible diet,smoking cigarettes or never doing any kind of aerobic exercise to help oxygenate the blood and move the lymph around. Again though,this is just one man's opinion ,based on my own personal experience. And whatever works for others and at whatever pace they prefer,is fine with me.

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Jetty

Thanks. I take much larger dosage than what u mention. I take very healthy and fresh food. All vegetarian. I also do 30 minutes yoga and one hour pranayama.

However, walking even 10 minutes pulls me down!!!

My one and only one problem is very low body energy. I never seem to feel fresh. Surprising thing is that in June this year I had a great 2 week vacation in bali and australia.. I felt perfect!! No issue with different time zone and long flts from India. WHAT CUD CHANGE IN 4 MONTHS?

In India, there are no CLL specialist. My onco sees me every three months. He did not address my QOL and same attitude of my GP.

Your and several other's story of having a normal QOL is very encouraging and I want to be in same league.

I am M 66 yrs old. How old r u? Any comments on sleep? How many hours etc.

Any articles that may be relevent?

vinnet

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Vinnet, I eat a macrobiotic diet. It is very different than any diet you are eating,I'll guarantee that 100%! Unless you are eating a ton of BROWN RICE,have given up poultry,all meat,all white flour based products and all sugar, and are not eating night shade veggies. Also without knowing your exact Karyotype or whether or not you have any kind of treatment,be it holistic or medical,I can't truly comment on your situation one way or the other,with any true authority. I am 64 years old,this coming February. Exercise can be a very challenging situation for some people,who may just be somewhat not in the best physical conditioning due to just having not been being very active in recent years,etc. In the beginning,aerobic exercise can be difficult and may require months of real effort,before you start to feel stronger and become better conditioned. Here's the thing---if your doctors feel you are healthy enough to begin an exercise regimen,you are good to go. But again,I don't know if you suffer from any other maladies---so slow and steady is the mantra. Vinnet- If you are on Facebook,please friend me. My name is Jay Blatt . Send me a FB request and we'll continue our dialogue,if you'd like. To make it easier for you, feel free to contact me via this site's Private Messaging facility (email address deleted by Admin): support.healthunlocked.com/... In the meantime, If you want to understand the basis (but not precisely what i do) for my health protocols---read these two books- Modern Day Macrobiotics by Simon Brown and The CANCER PREVENTION DIET by MICHIO KUSHI. I use an integrative approach using the best that both traditional western medicine and alternative healing or holistic medicine have to offer. But macrobiotics is the primary tenet of my CLL health related efforts. I can not diagnose,but I will gladly share with you,what has helped me to feel healthier.

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Hi David - I sometimes feel that this diagnosis has made me into a little hypochondriac. I was rarely ill and only saw the doctor annually. I was feeling very fatigued and my blood work has been a pretty steady decline. However when the dr mentioned chemotherapy I suddenly started feeling better. It’s hard not to let every little discomfort become a CLL problem. I see my oncologist every 2 months. I told her unless my blood work gets really bad I do not want treatment. Hang in there, read what people on this site have to say and relax a little. H

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Look for B symptoms. Night sweat that drench you, weight loss, mind numbing fatigue, actually not fatigue but a sick response like flu with no fever... enlarging nodes, pain from nodes on nerves, numbness, fevers.

The numbers game is a doubling of absolute lymphocyte count [ALC] within 6 months. Generally by itself it doesn't trigger treatment, but is combined with symptoms to get an overview.

I was forced on long term disability 2 years after diagnosis and remained on it for 12 years, until age 65 and pension.

Plan well ahead..going to living on a 6 figure salary to $1533 a month is rather grim.

~chris

Glossary

B-symptoms: B-symptoms are constitutional symptoms that are associated with lymphoma. 1. Fever. Unexplained fever with temperature above 38 degrees Celsius. 2. Night sweats. Drenching sweats (e.g., those that require change of bedclothes) 3. Weight loss. Unexplained weight loss of more than 10% of the usual body weight in the 6 months prior to diagnosis Other less common symptoms include: chills, pruiritis, alcohol induced pain or fatigue Source: AJCC 7th Edition Cancer Staging Manual, Chapter 57A:Hodgkin and Non-Hodgkin Lymphomas, A and B Classification (Symptoms)

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We can all think of hundreds of analogies for CLL but to me it’s ‘death by a thousand cuts’ and the trouble is doctors are not primed to deal with or interested in the ‘cuts’ that collectively make up CLL. I honestly believe that because medics are largely unable to address or directly link many of the ailments we suffer, they fail to acknowledge the connection. There’s such a lack of research into CLL and fatigue for instance and because, even if proven, doctors don’t quite know what to do with the information, it isn’t addressed. No one ever died of fatigue, right? Doctors struggle with quality of life issues because they are primed to preservation of life so acute will trump chronic every time. My GP told me as much.

You mention that your fatigue has become ‘very intense’ David and that’s a really major statement because what you’re saying is your CLL is now starting to impact how you live your life and earn your money. However, unless we are having the ‘treatment discussion’, most doctors will shrug their shoulders sympathetically but rarely try to offer up any answers. I often wonder if medics believe CLL brings with it some form of mental illness where thousands of previously sensible, hard working people elect to take to their beds for an afternoon nap as a life choice! Why disregard it otherwise?

I don’t practice denial because I like to know and delve. I want to know my ‘enemy’ because that way it’s less scary so I’ve spent the last 5.5 yrs since dx researching and joining together the dots that I think explain my respective conditions and their link to CLL. What I have learned is to some extent what ygtgo has described. For holistic care I rely on my GP but I’m very selective about what I expect him to do. I try to take some responsibility for my own well-being like JettyGuy and it’s becoming obvious to me that my haematologist sees his responsibility in very narrow terms. If I tell him about my severe dry eyes, excruciating cramp and sore joints, he writes and reports that to my GP (copying me in in case I’d forgotten!). His role is specifically blood cancer related and like many others, I find the limited remit of that frustrating. But he’s concentrating on ‘B symptoms’ and relies on numbers for links. I sometimes ask him how the ‘scores on the doors’ are looking.

Having CLL is the mystery tour of the cancers. You don’t know where you’re heading or when you’ll get there but you’re pretty sure you’d rather not go. None of us are ‘watching and waiting’ in reality. I think we are ‘enduring and agonising’ for the most part but we are expected to do it quietly with lots of naps!

I’d describe CLL like this...’life is good but good life is better’ and I’m not sure feeling permanently below par is good for high quality life and unbridled joy. I’m sorry if that sounds a bit grim and defeatist because it certainly isn’t how I live my life but I’m a realist and this CLL is a complete unrelenting pain in the neck! Oh and a pain in the neck is one of the major symptoms.

When people ask me why I’m on W&W and not ‘some kind of treatment’, I tell them that there’s no underpinning the foundations, it has to be nothing less than a total collapse before the team move in. And it’s a very curious notion for many of us to comprehend so I get the meaning behind your question David. However, you seem to be doing well so keep on doing that for as long as possible. You’ll know when there’s a problem and the doctors will tell you whether it’s serious enough so don’t concern yourself about that. Always listen to your own body and instincts though would be my advice.

Best wishes.

Newdawn

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Brilliant reply.

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Newdawn

Above is extremely accurate summation of my situation. I have wriiten it to jettyguy...

Is there any chance of compiling larger number of stories, like jettyguy? With larger data base and the various ways adopted, more of us can experiment and hope for a better QOL?

vinnet

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Apologies Vinnet but I’m not sure what you’re suggesting. Can you explain please.

Newdawn

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Newdawan

I think that like Jettyguy, there may be many others with cll but who do not suffer the deadly malaise of fatigue/ low energy.They might be taking some actions which help them to enjoy good QOL.

I wish if we can compile larger number of stories, similar to jettyguy...

Hope this clarifies?

rgds

vinnet

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I understand what you mean Vinnet and I can see you’re looking to find triggers and common denominators that may lead to certain symptoms in CLL plus ‘positive’ actions that people take which seem to reduce these effects.

Because of the individual and diverse nature of CLL, I think it’s hard to conclude that what one person does may help another. There’s so many factors at play like co-morbidities, stress and emotional factors, weight and inactivity issues, social support and attitudinal issues even before we start on tumour burden and extent of CLL infiltration. We all live with CLL in many different ways and the research doesn’t always assist why some suffer certain symptoms and some don’t. I agree it’s frustrating as my post outlined.

The site is full of such stories with people sharing their personal experiences. You seem to be asking that they be compiled in one place but I’m not sure how that’s possible. Maybe you could gather the ones you find useful and archive them yourself to assist you. If your main issue is how different people manage and deal with fatigue, perhaps you could start a new post but you’ll find that the issue of fatigue has been covered massively on this site.

You could even start a new post asking what actions people take to enjoy good quality of life.

Regards,

Newdawn

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Good idea newdawn!

I will start a new post..

vinnet

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December 14th 2014 is a date l will not forget because that's when I was told by a G P that l had Chronic Lymphoid leukemia.the word leukemia was so scary.l thought my days were numbered l was in a dark place after having lots of infections a flow cymatry blood test resulted in that diagnosis turned out l had had lymphosytosis since 2006 l had never been told so I was oblivious to it until then after that every time I was off colour l put it down to CLL .do l wish I was never told? yes and no,now I have had all the vaccinations and not a lot has changed l get very tired but since l started taking Vitamins D and B l believe it's better,but it's always there and always will be for better or worse. Hope you get some answers David and when you do let me know. Maggie

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Hi David,

I would definitely go part time on the work if you can.

Use the time to try to improve your fitness. It won't fix the fatigue but it will help.

Wishing you a long W+W

Ernest

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For me, the issue is my family. They seem to think that W&W means "wait to get cancer" as opposed to "wait until you really need treatment". So, my easy bruising, slight fatigue, sinus infections are all discounted by them or come as a surprise. I suppose that this has to do with the fact that dads (and moms) simply can't get sick. When I see a 2" bruise I very often cannot even remember bumping myself. It all comes down to managing your symptoms and living life one day at a time. When I think of the wasted days of preoccupation with treatment thoughts during the past four years since diagnosis, and then realize that there has really been nothing for me to do about the CLL, I get a little annoyed with myself and vow to simply live my life today.

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"We can all think of hundreds of analogies for CLL but to me it’s ‘death by a thousand cuts’ and the trouble is doctors are not primed to deal with or interested in the ‘cuts’ that collectively make up CLL"

Newdawn this is so true

While my CLL specialist finds me to be among his healthiest he discounts the effects of it on my total health which was really good before CLL

1. PTSD was in a really good place and while i still function a good nights sleep is long gone

2. I have seen and endocrinologist for a long time and while all is "well"its not near as well as it was

3.The foot is a really big problem i had and issue 10 years ago from fluoroquinolone toxicity which has been fine for 9 years but something woke it up again and after a 1 year program to try and heal it i will have surgery December 6th and hope i can walk correctly again No stress there

4.Left shoulder was reconstructed 22 years ago and its gotten really angry again seeing a different Surgeon and going to PT twice weekly for two months and we will see in January again stress as it would be nice to move my arm pain free

5. I am now allergic to everything outdoors in a pretty big way and the only spray that works has its own issues and bug bites our now a big deal

6. I have to go through and insane twice daily dental care regimen to stop any further abscess from occurring

7. I love the outdoors and competing in difficult trail running events and was how i kept the PTSD in check in a healthy way and if i am lucky and the foot heals after December 6th hopefully i can get some of this back as i also had to drop out of the team i have raced sailboats with for the last 10 years and put my own sailboat away for perhaps the last time

So i am currently seeing and being treated by 7 specialist for real things and nobody can quite put together the beat down this puts on me as each one is able to control there part

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Lots of ‘cuts’ there to contend with Tommy. How I feel for you with the Quinolone toxicity. sparkler on here was similarity affected and now campaigns and supports people who have been affected.

My shoulder is pretty well busted too after fully tearing my rotator cuff nearly 2 years ago. I wake up most mornings and survey what’s still working! However, we keep going and finding positives. It must be hard for you with the PTSD so well done for staying strong and enduring through it.

Regards,

Newdawn

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