I was diagnosed 7 years ago, at the age of 48, with Chronic Lymphocytic Leukaemia. Over the years I have become accustomed to the unfazed response of the haematologist at my regular blood check-ups: all stable, nothing to worry about.
At every occasion though I have been reporting on symptoms, from fatigue through abdominal and muscle pain to blurred vision and mucus build-up, which are affecting me and have contributed to a decreasing quality of life and loss of job. And yet none of these symptoms can be explained, in the opinion of my haematologist, by the CLL. Nor can my GP explain them, suspecting that therefore that they are related to the CLL. It's a draw, so to speak, with each side having exhausted their resources of patience and knowledge.
I am hence in limbo, feeling gradually worse but apparently not unwell enough for any kind of treatment to be administered. Unsurprisingly this has made me quite cynical about and untrusting of the medical profession and health system.
I wonder how many of you find yourselves in this kind of limbo?
Lapo
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Lapo
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if you want a change your probably going to have to get a second opinion form another haemotologist. Some are open to starting therapy like Imbruvica sooner
Mucus can be CLL related, as our IgA levels drop, the mucous membranes or mucosa, seem to go into warp drive, trying to produce antibodies against pathogens... I have experienced this for years.
After treatment, the IgA counts rise and the mucus tsunami subsides.
Vision needs to be assessed buy your opthamologist, since CLL can infiltrate the eyes and it is often very slow...
I'm certainly in limbo as my train slowly pulls into the terminal, but I'm also very positive and quite enjoying myself... 🚂
I hope you will advocate for a few specialist appointments to get a handle on things... hemaetologist often dismiss things they feel are not CLL related, and GPs don't have much depth of knowledge of CLL's finer points.
I’m wondering if some of those symptoms could be attributable to your diagnosed retinopathy and Sjogrens? Did you ever receive a Sjogrens diagnosis? It certainly impacts in terms of some of the things you describe but it’s clear from the mammoth anecdotal evidence we have, that many haematologists still don’t recognise some of the side effects of CLL.
It’s very frustrating I agree but explore the other possibilities too to see if they can be eased.
With regard to Sjogrens it was inconclusive, 50/50 - in any case nothing can be done about Sjogrens, so not much help to know what it is if limbo is maintained.
Lapo, since your are in UK and I in USA, I may not be the best person to help you because the difference in our healthcare systems.
Are you able to get an appointment with an Opthamologist for your vision problems? I think I was around 55 when I had the beginnings of cataracts, and began having that checked every year by an Opthamologist.
For the mucus build-up, I am not sure if you are meaning sinus congestion or chest congestion or both? Is your healthcare situation such that you can see an ENT for sinus?
While it is true, some things may be CLL-related, most often in the years of Watch and Wait, we need to see other Drs. for all the regular things that we have happening just because we are human and aging (even before we consider ourselves "old'.)
If your GP is not listening to your legitimate complaints, is it possible for you to change to a GP who will listen to you and give you some guidance? Several of the members here have had to do that to get care that is helpful to them.
It often takes patients getting angry at the lack of care to get them moving to a place they can get better care. Please don't be shy about talking to the Dr. when you don't get help for a continuing problem.
It seems that I am collecting a series of diagnoses that are CHRONIC. The retinopathy is of a chronic central serous kind, the sinusitis, if that's what it is, is also chronic. The muscle pain is some kind of myalgia, in my GP's assessment ,and the abdominal pain is chronic indigestion....And for none of these things has treatment or medication been prescribed.
I got a second opinion a few weeks back & it’s been a revelation. As @Cllcanada mentioned GPs aren’t necessarily knowledgeable enough & haematologists aren’t specialist enough. All of my symptoms ( that I thought were unconnected) over the last 3yrs, according to the specialist, can be attributed to CLL - blurred vision yes, joint pain, bloated, aching around swollen jaw, tooth ache, ache under diaphragm, exhaustion, lack of stamina, bouts of insomnia & on & on.
I’m back at Christie’s on Friday to sign up for FLAIR having passed muster. A little apprehensive as the time gets nearer & increasingly aching all over the place
I am back the week after at Christie. Mr Bloor's Friday Clinic. I came to him for a second opinion, was very concerned about the first haematologist I saw, who gave me a book about the wrong cancer, and said my breathlessness didnt matter - I couldn't walk more than a few yards without wheezing like a steam engine! I was very very anaemic it turned out when I got to Christie.
I am interested to hear that you have stepped out of your limbo. I am reluctant to change my team as this can be a complicated process under the NHS. They have you where they want you..
I didn’t find it complicated at all - my haematologist was relieved that Adrian Bloor was reviewing me ( I said that I would be interested to see if there were any trials open beyond FCR) - I see my regular haematologist tomorrow & Bloor Friday- I haven’t found NHS to be remotely proprietary. What I do know is that unless I push for what I want out of this, I’ll get lowest common denominator.
Yeh but have you specifically asked for second opinion. I found out closest geographical CLL specialist, so came armed with the person I wanted to see. It took 3 -4 weeks for appointment to come through.
I’d love to know how you did that! I have asked several times to be able to see my nearest CLL specialist (90 odd miles away) and have been told flatly it can’t be done, unless I had something the haematologist couldn’t deal with. Frustrating.
Possibly having already had a life threatening incident, everyone is cautious around me (?) - I can only say how I found it. I was prepared to see him privately for consultation, if that’s what it took.
Thank you for the website, I now understand why I won’t get referred to the Cardiff Professor. I have changed to another haem. consultant in the same hospital after an unfortunate appointment with the locum and will have to stay with her. Trouble is, I’ve read on here that those who are under a CLL specialist live longer! 🙁
Sometimes the haematologist feels a sense of professional pride of not wanting to refer on because they feel they are capable of doing just fine.
If you on the other hand just go to your own GP (ideally one that knows you well) with a name (don’t expect them to know who the cll experts are) and say you want a second opinion and explain why, well most decent GPs won’t refuse that and will gladly write a letter.
Mmm. I’m sorry that was their response. It’s not just about the absence of treatment tho. After all the second opinion doctor may not want to treat you either. It’s about your sense of not feeling listened to or understood, and not having sufficient confidence in the way the plan has been communicated to you, and about not unreasonably wanting to be seen by a true expert. Is there a different GP at the same practice you could appeal to? Did you talk about your concerns re sinuses? We’re they at all helpful regarding that? Technically we don’t have a legal right to a second opinion but it is highly unusual for a GP to refuse to facilitate one. It may be that you could use some kind of advocate to help express your concerns. Is there a family member that could help you?
This must be a bit of a frustrating set back. But I hope you can find a way through. Hang in there. I can only imagine how difficult the last few years have been for you. You are not alone. You are not unique. Many of us have similar issues and similar frustrations with both the effects of this illness on us and navigating our way through the NHS. It’s worth keeping on though.
I have expressed my concerns at very occasion and in writing to both GP and haematologist and clinical nurse. It has now got to the point where they believe it's in my head, suggesting cognitive therapy... I don't dare bring anything up anymore, hence this post.
It’s very difficult for you. Have you considered seeing a different Gp? Also changing tack a bit. And moving the focus from getting chemo or other treatment and to requesting a second opinion about the best management of your condition in terms of infections etc? I do believe it is not unreasonable of someone to request a second opinion. And most GPs seem to agree. If you don’t feel you can talk openly even to your GP it does make me question if you should be getting a different one. Do you have a group practice? Could you see the most senior doctor in the practice and appeal to them?
Well if you go to a group practice you can try talking to a different GP. And if you don’t and you feel your GP isn’t helping you, well it may be time to find a different group practice. There is no doubt that in the NHS we often have to be persistent and make our case on more than one occasion and to more than one person.
Of course the issue here is sometimes that GPs feel their hands are tied. And of course it is true that a second opinion doesn’t automatically solve everything. But for sure there are huge variations in practice between different hospitals with this condition on a lot of points and it is a good idea to keep trying to get that second opinion. It helps if you have a specific doctor in mind (GPs won’t know who the real CLL specialists are in their area necessarily. And if you have some specific questions eg I would like another opinion of whether I meet the criteria for treatment of my cll, and also to have a review of the management of my repeated infections. This NHS page may help. And it’s important to understand it’s not an automatic right but it is something you can explore. Often if you calmly state your case on more than one occasion then you are more likely to get the right decision. Oddly we do have an almost absolute right under the nhs to choose where we are treated. But that seems to be enshrined for the first opinion. But involvement of PALs or simply appealing to one of the partners at your GP surgery often gets this sorted for people. If nothing else repeating your request on more than one occasion makes it clear to the doctor how important it is to you.
I really appreciate the care you are taking in your replies. The NHS link seems useful.
I have "tested" all the GPs in my group practice. As you know, despite booking double appointments, their time and attention span are limited. There is no continuity, results are never commented upon and it takes so long to have any test carried out that every consultation is a new start.
There may be patient rights but quite frankly I no longer have the energy nor inclination to go and assert them. Like fighting windmills or immovable forces.
In my experience, sometimes you get sympathy, most of the time you are just speedily processed but you rarely get any resolution.
These are the symptoms I am having and am not sure if it’s sll related , I posted on it a day ago. I have lower back pain, generalized mild to moderate abdominal discomfort, and on and off abdominal bloating. I’m not sure if it’s my diverticulitis or my SLL. I have a routine appointment with my local oncologist in 2 weeks and won’t see my cll specialist until April. Like I was saying I had a Ct scan done a month ago and nothing was abnormal. Best wishes John
Different Symptoms but currently going through same dilemma and we are of similar age.
Finally I have a GP who is on side, but she is getting frustrated with consultant. Consultant proving impossible to see unless massive fluctuation in W&W, she just seems to base everything on blood count/works and is uninterested in Symptoms. Yet mine are pretty much text book CLL Symptoms and incapacitating.
Currently seen at Torbay Hospital by general blood consultant. Exeter (nearest City) Hospital have specialist Leukaemia Department. I researched and found the name of CLL Specialist Consultant. Discovered he works one day a week for a Private Hospital. Am in the process of getting an initial private appointment, as well basically you get a much longer and less of a NHS ‘in out production line’ appointment. Intention/hope will then be to be transferred to see him under NHS in Exeter. The £200 for initial Private appointment is a bit steep but in the scheme of things well worth it.
A second opinion is is the way forward. Good luck and all the best.
Can your GP not just refer you to this Exeter doctor on the NHS for a second opinion? I have heard good things about the Exeter service and apparently there are also some outreach clinics that he attends. They even run Flair out of Exeter.
It’s often not even about the treatment plan but about the sense of being listened to understood and taken seriously with a proper explanation of why the plan is what it is. And the reality is sometimes even top experts interpret the treatment guidelines differently. And if you are getting repeated infections those definitely need managing.
It’s a common mistake, however, to think that repeated infections in themselves are an indication for treating the CLL itself. That’s actually not listed as one of the reasons in the iwCLL guidelines because all cll treatments initially make our immune systems even worse.
Thanks for your thoughts Adrian, appreciated. In an ideal world what you suggest is what I would be doing.
Its having a long-ish, unchallenging appointment that I feel I need initially, hence the private route.
It’s not so much starting CLL treatment I am seeking but a general all round medical understanding and acceptance the effect CLL is/could be having in other areas.
For example... I have two herniated spinal discs. One of them constantly trapping a sciatic nerve. I cannot explain the pain this causes. I have had spinal root injections into them with no joy. I did suffer from infections in the spinal area however just from these relative simple procedures. Physio does not help as when I work on one of them it makes the other worse. I am therefore left in constant pain. In general I am unable to heal and would estimate a simple cut I get now takes 5 times longer to heal and scab, usually after a mild infection. The only option left would be an operation, but I have had to pretty much refuse this due to the post infection risk in a rather delicate and internal part of my body. As my current blood consultant considers my CLL Mild and Stable, this decision is considered my choice - hardly the case. My only help will be from the Pain Clinic. I have been waiting 9 months to get in there and will possibly be waiting another 9. The only way this can be brought forward is by confirmation from my blood consultant that in reality there are no other options available. But I can’t even get into see her as again looking only at my blood works like she does she considers my CLL Mild and Stable. My Gp is banging her head against the wall.
I didn’t reply to this yesterday as over the last week suddenly every single bone joint - and I mean every single bone joint - in my body is playing up and putting me in the most uncomfortable constant pain. My GP did more bloods last week because of this and rang me yesterday to confirm the Rheumatoid Factor is through the roof and she is trying to get me an emergency appointment with a Rheumatology Consultant. I checked my Patient App and checked the results and realised she had done full blood works at the same time. My white and bloods are spiralling now, compared to my W&W results of only a month or so ago - when for the first time they where ‘recovering’ and going in better directions. I asked If should really be seeing the blood consultant as well as surely there must be a connection, she agreed and said she had tried but guess what ‘Mild and Stable’...
I have a bad reaction to any opiate based pain killers. I already take the absolute highest dose of nerve pain medication already all be it as an Anti Epileptic Drug - War Disablement Acquired Brain Injury, Epilepsy, PTSD is a story for another day. I’m on the maximum dose of Naproxen the GP can subscribe, yet I am well basically in agony every minute of every day at the moment.
It would just really help if I had CLL specialist on side, taking everything into account and advising the specialists as necessary in the other areas at the moment. Not too much to ask in the scheme of things is it?
I have had a GP like that in London, where I live.
She also forcefully made the case for treatment to my Royal Marsden team but was told that my symptoms did not meet the "criteria". So she is now suggesting it's my head as CT scans and the like aren't telling her anything else. In fairness, she did suggest a form of steroid treatment (Prednisone) but because of my retinopathy I can't take it.
Hi, sounds to me like you need a change. Are you in a group GP practice? If so do you tend to see the same doctor each time? I would go and see the most sympathetic doctor in the practice or if that fails one of the senior partners. Book a double appt. And explain how frustrated you are and ask the GP to organise a second opinion with a specialist CLL true expert.
The question is where abouts do you live?
If you are anywhere close to Leeds then obviously Peter Hillmen is a good option (and he does spend quite a long time talking to his patients NHS or private). If you are near enough to London that’s another option as there are several experts you could see there. And elsewhere around the country there are other expert sites most of whom will gladly take you in with a referral from the GP. (If you’ve already asked the Haematologist and been refused a referral go to the GP instead).
I am interested to read some of your symptoms. Fatigue and muscle pain has been a major part of my life since having CLL and there are many other patients with the same story.
Mucus is a big issue for me in the sinuses tho I have it quite well managed at the
Moment by the combination of sterimar nose spray, steroid nose spray, antihistamines at high dose, and regular prophylactic antibiotics.
If your mucus build up is leading to actual infections, it may be that if regular antibiotics didn’t help you could be considered for antibody replacement therapy (IVIG).
Of course none of this is a guarantee that a specialist will feel it is time for your CLL to be treated. But at least you will hopefully find a specialist who takes your symptoms seriously and acknowledges the link between them and CLL.
If you don’t want to share where you live to the group feel free to DM me and I’ll try and help you find a local expert. But if you feel comfortable to just share your nearest big town or city we can make recommendations.
If you have a look at this map I will link below you will see the locations of around 100 sites which at least have some special interest in CLL because they have signed up for the FLAIR trial. If your current hospital is not in this list then you have all the more basis for being referred for a second opinion. Note that there is significant variation in the level of expertise of these sites. But as far as we have been able to ascertain so far there are no true experts in CLL who have not signed up to this particular study. (Not to say of course that Flair is right for every patient, it’s just used here as an indicator of innovative thinking and willingness to take some trouble and extra time on behalf of patients with CLL)
Having written all that I then noticed that you had mentioned that you lived in London. I’m wondering who said you didn’t meet the criteria to be seen at the Marsden? Was it the Marsden or was it your existing specialist?
Most patients who we hear about on here who get stuck like you have seem to have been able to get unstuck by asking the GP to just refer for a second opinion.
Depending on your geography of where in London you are here are a few other options which are also top experts (in addition to the Marsden)
-Dr Nathwani and team at UCLH in Euston
-Dr Patten at Kings College Hospital in Denmark Hill
-Dr John Gribben at St Bart’s Hosptal near St Paul’s
Thank you, Adrian, for taking the time to write such a comprehensive reply.
I have tried some many different avenues over the years, including so of the many useful suggestions posted on this exchange, with no result, that I am quite frankly at a loss and have run out of energy and, dare I say it, confidence.
I have been seen for the past 7 years in Oxford and now in London by CLL specialists. Can't quite imagine what reason i would give to ask my GP for a referral for a second opinion.
That you would like to have a different doctor review your case.
Are the doctors you see true CLL specialists? Have they published in CLL? Done clinical research?
Even then sometimes it is good to get a different perspective and a fresh pair of eyes looking.
Have you asked them for help about your repeated sinus infections? To test your antibodies and to consider prophylactic antibiotics?
Of course the discouraging thing about this condition is that it is sometimes completely correct NOT to treat it directly even if you have a number of quite debilitating symptoms. And that can be very hard to accept.
I have to say that I couldn’t have got through the last two years without counseling support so if they are offering you that it is in my view worth taking them
up on it.
Sometimes there are no magic wand solutions. But it is not unreasonable for us to want an opportunity for another specialist to review our case with us, even if the eventual conclusion is the same at least the process makes us feel we are being carefully considered for another time.
My haematologist is a leading expert in CLL at the Marsden though I never get
to see her, only her junior colleagues. Their view is that my symptoms are not CLL-related, my GP can't see what else it can be. As I said in limbo.
The counselling is not on offer as such; it it the NHS Talk-Talk group programme which I tried but do not rate. Unless you are suicidal they are not interested. Maggies will listen but have suggested that one should get to the bottom of my symptoms first as they felt the issue was physiological rather than psychological.
You have my every sympathy Lapo, it's hard to argue with a leading CLL specialist.
I really don't know what I would do in your situation but I think the private patient appointment is a step forward for another opinion.
One other thought, if you feel strong enough at your next appointment, you could ask for your case and symptoms to be reviewed at a MDT which would mean that you would get a wider review of your case than just the junior Dr at your appointment.
I get that. But you are struggling. And you feel the need to get answers. Sometimes in the NHS we have to push a bit to get the answers you are looking for. And I think the management of your sinus issues is a good place to start. Hang in there. You are not alone.
Or simply ask for a second opinion elsewhere. It’s perfectly reasonable to ask for another cll specialist opinion even from a different hospital. Or push that you want a more senior review than a junior doctor because of your concerns about your sinuses. It is a shame that we have to really push. But we do. The marsden surely have a formal counseling service for their patients you could ask about that. And also you could ask to speak to a specialist nurse. I have found them to be very helpful and supportive sometimes.
I suffered from fatigue for several years prior to CLL treatment and put it down to slowly decreasing levels of haemoglobin as a result of the CLL. Following a blood test at my GP surgery it was discovered I had an under active thyroid and from then on was prescribed levothyroxin to boost my thyroid and that made a big difference until finally CLL took hold three years ago necessitating the start of treatment.
None of the many exploratory tests I have undergone have uncovered any sign of other problem such as hypothyroidism. So far.
I am thinking that my problem at the moment is one of perception; the doctors' perception is that all investigations have been carried out and, in their process-driven minds, no result is conclusive of "no action required". NA. That is what the nurse tells me over the phone when I call GP surgery for test results...
This may be a long shot, but I had a lot of those symptoms. My nutritionist told me to quit gluton for two weeks to see what happened. To make a long story short, I got drastically better. I never went back.
Yes, I was sent to ENT and they diagnosed Chronic Sinusitis but no medication. Acid reflex was ruled out. I eat very little diary but when I do it has no immediate effect. I have (sadly) cut out wine. Nevertheless I get flue-like symptoms every evening and congestion. Latest CT scan showed lymphadenopathy in the lungs but this was not raised as a concern by my haematologist.
I now get the feeling they just want me to go away...
Chronic sinusitis in someone with CLL to me is a clear indication for intervention either surgically (drainage helps some) or at least by steroid inhalers and/or permanent use of antibiotics). Tried either? Also if that fails IVIG may well be indicated. Seems you have to really push to get that in the UK but it is definitely available for some.
I am also on IVIG for my sinus problems. You may need to lay it on thick with your GP to get some relief, but your Immunoglobulins need to be low to get IVIG. Luckily my ENT surgeon said he didn’t want to to operate as he said I could end up with more infections and scar tissue.
Ok. If you have a friendly GP you can definitely say that you know other patients are treated for their chronic sinusitis with those three treatments.
Basically the sterimar washes out the nose and aims to stop the gunk from building up.
The avamys spray (a steroid) aims to reduce the volume of mucus being produced. Think of it as a bit like an allergic reaction.
The regular antibiotic aim to keep low grade infections at bay and prevent them becoming fully fledged.
And the uk clearly has guidelines for IVIG that if you are on regular antibiotics and still getting recurring infections you can be considered for this if your serum antibodies are low.
If your GP feels comfortable and that it is appropriate to your specific case they may be willing to try the first three of these ideas themselves. But the fourth will clearly need a specialist and careful consideration. All this gives you a good in to also ask the GP for the second opinion referral it seems you would benefit from.
I do believe that if you saw one of the cll specialists we spoke of earlier they would hopefully be able to take another look at your case. They might not think it’s time to do chemo or other active treatment yet. But they will if nothing else make you feel like someone has listened to your problems.
Many of us on here empathize with how you are feeling.
You are not doing well. Is there a sympathetic GP in your practice ? I have a list of things from ENT but I know that a prophylactic dose of Azithromycin and the Avamys spray help. Also Sterimar over the counter spray.
My lymphadenopathy was present in my neck so it was causing problems so treatment started. I should ask again about yours with your Haematologist. And if you like it there is nothing wrong about a glass or two of wine. I swear by it !
Fair point I guess, but I suppose i take the view these days personally that I need all the little bits of help I can get. And it’s good in a way that it appears on my regular repeat prescriptions. Clearly when you are unable to work due to cll then money becomes more of a concern for many of us. I am personally blessed that I have an income protection insurance policy that is paying out but that’s clearly less than my salary should be...I’m very aware that some people are much less fortunate financially than I am when it comes to the tsunami of cll hitting them.
yes but from what I understand, for some people living with the "toxic" results of treatment is WAY better than living with the symptoms that treatment can alleviate.
I hav CLL (wait & worry) plus Type 2 diabetes. I am also approaching my 70th birthday.
Nowadays, when I feel crap, I have a choice of 4 possibilities:
1. It may be associated with my CLL, or;
2. It could be due to my diabetes, or;
3. It may just be my age, or;
4. None of the above. It’s something else.
So I well understand health quandaries Lapo. Whenever I mention those possibilities to my doctor or other health practitioners, they invariably start to look as though they’re chewing a wasp. Cheers me up no end.
Yes, you have an important question that would be good to discuss at some time and place, but it is not relevant to this thread. You are addressing Lapo here, who is only 55 years old and not had any treatment yet. He's not been told he's about to die. He has some difficult symptoms and is looking for answers.
Paula is quite right in the response to you humaniquarian. This is a site for people looking for answers to preserve and improve quality of life with this condition not a defeatist approach. We have members ranging from their late 20’s onwards and their loved ones. All have life left to live and make no apologies for that.
These comments are therefore insensitive and do not add support or encouragement.
I have changed my diet, work out regularly, I get accupunctureonce once a month which helps the pain in my muscles and take chinese medicine herbs Curcumin is amazing and he also gave me an herb to help with pain which I've been taking for a year. The thing I found out with drs. is they aren't sure about the pain as not everyone does have pain, so take charge of Your health and do what feels good to you. Go alternative and see if that works. I live in Canada, so we also use CBD oil for pain which also helps.
Lapo - I have much sympathy with you. I was diagnosed 9 years ago and have been on W & W ever since. Fatigue has always been a curse and when I first discussed it with my GP and Haematologist it was as though I was considered a malingerer however they now accept it as a common symptom. My eternal frustration is that it seems there is little research in this area. I too have mucus build up but also very puffy eyes - which has been dismissed. Intermittent and unexplained muscle pain can be very debilitating preventing even the simplest of excercise to counter the fatigue. Brain fog and loss of concentration could I suppose be old age at 70! Ho hum - rejoice in all the good work and research being done and the belief by so many eminent people that they will have this licked soon.
Its pretty well established that CLL fatigue is actually a chemical imbalance and we get constantly bombarded by a 'sick' response... so it is sick rather than tired...
Like Paula , my fatigue hit in about years 4 after diagnosis, but then gradually reduced during 10 years of watch and loose weight.
After my first few rounds if treatment my mind numbing fatigue lifted and has never returned, even when my Hgb dropped into the 79s and my absolute lymphocyte count [ALC] was over 450k...
Counterintuitively, daily exercise really reduced my fatigue, to a point of being quite manageable...
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