CLL Support Association
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Confused again

I’ve spent over a year worrying that I may have CLL because my GP mentioned it to me when I had blood tests done which revealed raised lymphocytes. The last five months have been the worst because I was referred to a haematologist. I saw the first one in Nov 2017 had bloods taken waited and waited for results. Eventually I called them in jan 2018 to be told that the bloods were too old by the time they got to the lab. I got another appt late jan to see another haematologist. Had more bloods taken was told there is no cure for blood cancer and we don’t treat it. Was told I’ll see you in April I’ll tell you the results then. I had occasion to see a nurse and spoke to her she thought that was a bit long to wait for results she said if it was her she’d be worried. So I called the hospital again first call took my number said they’d call me back.... they didn’t. I called again last mon I got told we can’t give you results over the phone go and see your gp he’ll be able to access them. I’d already seen my GP two weeks after I saw the haematologist he said he would get reception to check every mon to see if results were back so I told her this she still said we can’t give you results over the phone. Two days later I got a call from the haematologist to tell me there was no signs of any malignancy in the cells I didn’t have CLL. I’m thinking brilliant. So I said do I still have to see you again next month..... he said yes he said there are other reasons for raised lymphocytes (lymphocytosis) one of them being smoking do you smoke? I do smoke he told me to stop before I see him next month. I’m feeling very confused and down for some reason. If smoking is a cause of lymphocytosis would it not be something that would be addressed when it first came to light that my lymphocytes were raised. Instead I’ve spent about 15mnths worrying and smoking was never ever mentioned. I don’t get this am I stupid or are they stupid .....I’m at a loss!!!🤔

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Can't you sign up online for membership with your gp? You should be able to view your lab results that way. Are you in the UK? I can't imagine services are too much different than in the US?

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Yes I’m in the U.K. things are done different over here I think. We don’t get to see results as far as I know. What I’m trying to say is it would have made more sense if they asked me in the beginning if I smoked and told me to quit before they do anymore tests.

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Just seems like such a waste of time and money theirs and mine . Is it common knowledge that smoking can cause lymphocytosis does anyone know. Has any off you that has raised lymphocytes and being monitored for CLL been asked if you smoke or not? It’s on my records but was never mentioned to me during the last 15 months of tests etc

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First question I was asked.. do you smoke..which was in 1998.

But smokers are far less now so perhaps its not as much an issue when patients present with elevated WBC counts...

Here is a recent paper from Japan that looks at smoking and elevated blood counts, which are reversable.

sciencedirect.com/science/a...

It took me 4 tries over a year to quit a two pack a day habit, but there is help, so reach out to your GP and get the meds you need...

It was easier than I thought... once I got my head straight to quit

~chris

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Thanks for that Chris.... I only smoke about ten a day planning on vaping CBD instead hoping that will help. They speak of healthy adults in these papers I’m not healthy that’s part of the problem. So tired all the time lots of sweating plus other things . Maybe it is something else somehow I doubt it’s the smoking .

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Have them do more testing with a bone marrow extraction. Mine turned out to be marginal zone lymphoma. A ct was also done.

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Chris, just wondering, you speak of meds to help you stop smoking. Just wondering what meds were they. My brother-in-law is a severe diabetic. Blood clots , fear of losing his leg. He is a smoker and this has impacted his health , greatly. So reaching out to you to maybe find something he has not tried. Thanks J.R

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While you have been put through a difficult time finding out you don't have CLL, knowing that this situation is probably quite rare perhaps may at least explain why this has happened to you. This is the first time I've heard of smoking causing lymphocytosis. When investigating the probable cause of symptoms, doctors understandably look at the most likely reasons first. I expect they were equally surprised by the cause in your case (but they didn't have the stress of waiting, for which it would be good to receive an apology...).

Neil

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I’ll see my GP next week maybe to see what he’s got to say about it all. Don’t know why but I feel they’re not being entirely honest with me somehow. I seem to have to keep persuing them for answers or results. If I hadn’t asked I’d have done a 6hr round trip next month to be asked if I smoke then told to quit it doesn’t make sense to me

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I ask for a copy of my blood test every time I have one (uk). No problems with hospital, though I haven’t asked the GP yet.

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You can get your results on line through your GPS surgery just go in and sign up. I had lymphosytosis for 8 year's before diagnosed through a test called a flow cymatryhope you get results soon l know it's a very anxious time and give up smoking anyway best wishes maggie

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In the UK not all GPs offer an online service. Not only that, even if they do offer one you have to apply. If your HP believes it can be detrimental to your health to have access they can refuse.

I’ve just moved house and as a result GP (I am now about 200 yards outside my old GP’s area). The old GO did not offer patients viewing their records online. The new one does but all I can see so far is what meds I’m on.

Before anyone says, I checked on the distance situation (200 yards outside old GP’s area. They said they’d cover me as out of area patient but that meant no callouts/home visits and no district nurse support. Could not risk needing it.

rob

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Thanks for replying take care Sunflower

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Can’t help with the smoking question I am afraid.

Sorry to hear you are getting poor services in the uk.

Is your haematologist a CLL specialist? If not maybe you should request you see one.

You do not say where in the uk you live. If you did someone may be able to recommend a CLL specialist near you.

As far as accessing your lab results at home on computer it depends where the tests are done. I can access gp tests but not hospital tests. These are given to me at appointment with a follow up letter to my gp and copy to me. Your gp should be able to help. All practices are different.

Sorry I can’t be of more help with the smoking question.

Good luck

Ann

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Thankyou all for replying. I’m quite surprised to see that aussieneil was never asked about smoking. Just feel it would be or should be one of the first questions when you have a raised WBC ...I’m confused 🤷‍♀️

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I actually had a normal WBC at diagnosis; my CLL started off as SLL.

Doctors ask patients whether they smoke all the time, given how many illnesses can be caused or worsened by smoking, so I well may have been asked. I just don't offhand recall smoking being found to be the cause of someone's raised WBC before.

Importantly, as Chris points out, your raised WBC is reversible by quitting smoking. And while that can be very difficult to do, the rest of us don't have that option!

Neil

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Sorry Ann but he says I don’t have CLL. I’m in the far north of Scotland and have to do a 6hr round trip to see the hematologist I haven’t heard of any CLL specialists this far north.

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Sorry my misunderstanding. I can’t help with specialist in your area. I hope someone else here can. Keep us updated on how things go. Sorry I can’t be of any more help at the moment.

Ann

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Thanks Ann feel a bit of a fraud being here really but they led me to believe we were looking at CLL. Last time I spoke to my GP he was speaking to me about chemo.

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Don’t worry about “feeling like a fraud”! You had legitimate reasons to be both concerned and confused. Glad you found this group! Hope you find a way to quit smoking so you don’t become a bonafide member. :-)

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Hi you are not a fraud just confused as you said and understandably. I was happy to respond hope I was of some assistance. This is a good website so you came to the right place.

Take care

Ann

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Seriously, somebody needs to speak up! In the US, hozpital not giving access to your medical records is a big no- no. I would flopping elevate my voice...

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I'm so sorry to hear you've had such a run-around at that haematologist or hospital.

I'm also sorry to say that if a hospital neglects to send a blood sample out to be tested, it shows that the staff may be in some disarray. I would wonder whether other test results from there be trusted? Usually, immediately after blood is drawn, a preservative is added. It depends on the test, though. Samples can survive in a refrigerator for several days or longer, so that weekends should not be a problem. During end of year holidays and severe weather, problems can develop due to staff absences, closed roads, and airports. The practice should be expected to have a system to detect the problem, and immediately inform the patient to come in for a new blood draw, though.

I'm an American, but the Google Bird told me that my Scottish cousins have a right to see their medical records just as Americans do:

nhsinform.scot/care-support...

I make a practice of getting my medical records in writing as soon as possible after a visit, and keep them in a notebook binder. It's worth filling out the form to make the request. I've worked in medical IT in the U.S. for 10 years, and have seen tragic losses of digital records that were not discovered until all backup tapes had expired or due to software upgrades where old data can no longer be read from tapes. It doesn't happen often, but it happens.

They key thing to concentrate on at this point, I think, is whether did any sort of testing to look for mutations or other signs of abnormalities. These could be the protein tests you mentioned in an earlier post. They may be shipped off to another lab, since most smaller hospitals and clinics do not have the lab equipment to do them.

As a worrier, I think that the worry can take its own toll that can be worse than CLL itself, depending on the mutations, of course. I encourage you to seek a counselor who can help you with the worry, and inquire about any sort of healthcare advocate who can help you navigate your NHS. I think that navigation of health systems is a worldwide problem.

best wishes,

=seymour=

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Keeping a notebook for my husband and now myself, has been a life saver! When you see a multitude of Drs. or just one, you must be proactive !

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Hi

I’m both sorry and angry to hear about your experience with this and know what a worrying time the period of the unknown can be. This is a perfect example of the division in our NHS and how different trusts work but should apparently work to the same rules.

I live in the south of the UK and can say that I have been treated exceptionally.

The reason for my anger is there is a protocol in the NHS that if there is any suspicion of any kind of cancer the patient is put on the “2 week rule” this means you are seen and tested within this period

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Sorry hit send before I was finished 🙄

Your local hospital should have a PALs department which you can raise your concerns and if needed make a complaint about your shoddy treatment as I promise you it has been.

Good Luck for the future.

Dell

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Gosh, I am feeling SOOO cross reading about your experience here in the UK and feel disgusted by it. I am so sorry you had all that time to worry - is this down to the lack of resources in NHS currently, or to pure incompetence and lack of empathy of your GP/consultant?

In regard to not getting results here in the UK, well I am afraid I have been very robust in demanding my results. I have had CLL for 11 years now and have the results of every blood test from the beginning. I ask for them and write them down and I have had them over the phone too!

I have found you really do have to be your own advocate in dealing with all the medics and need to get some background knowledge from reputable websites too.

I do not know about smoking and its effect on lymphocytes but, I think in your situation, I would be penning a detailed letter of complaint outlining the series of events, and non-events, that you describe above. It is not good enough.

I wish you all the best and hope you get sorted out soon! Holly

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Sounds like you MUST be in the NHS uk, because this is exactly how the nhs works ( or doesn't work in most cases). They only treat the most severe, or the most well known patients, and its impossible to get result print outs or a definite diagnosis. I have the same, raised lympocytes found by accident during a full blood count because of tiredness. I have never smoked, so the smoking they told you as a cause is nonsense. I have also been told that it may be cll or it may not, that was over a year ago. The Hematology ( trainee) said my count was not enough to do a flow cytometry ( expense of course). I was told to watch n wait, have 6 monthly bloods, and was discharged! Ifeel ok but have itchy raised supraclavicle and my thyroid level is quadruple what it was a few years ago when I felt good. Again the nhs refuses to treat thyroid tsh unless a certain high level over 5, mine is just under. The nhs is a disgrace and I am now looking to see an endo and hematologist privately.

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Hi Lullachic

I highlighted this in my reply above, ever since the breakout into separate trusts it really has become a postcode lottery. I read some of the treatment some people have received and I am shocked. I have obviously been very lucky as I am under Epsom and St Helier trust and they have been unbelievably good. I have never had any moment where I felt uninformed or couldn’t ask a question. Yes sometimes your appointment waiting time can overrun but this is because they are giving the person before me the same standard of care. There are still some exceptional people in our NHS which is all the more sad.

Dell

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With respect to your statement that "I have never smoked, so the smoking they told you as a cause is nonsense.", doesn't necessarily follow. A raised lymphocyte count can be caused by many different factors, including smoking per the research paper cited by Chris/CLLCanada above.

Even when looking at the causes of raised lymphocyte counts where it is caused by a blood cancer (i.e. when most of the increase is due to cancerous identical clones), the cause can be due to B or T lymphocyte clones. B lymphocyte blood cancers can fall into Hodgkin's and non Hodgkin's Lymphomas of which CLL is one of the Non Hodgkin's Lymphomas. If your raised lymphocyte count is caused by clonal B Lymphocytes, it can be due to Monoclonal B Lymphocytosis, which becomes increasingly common as we age, but only develops into CLL in a small percentage of cases. If you fall into that category (or even very early stage CLL), a recommendation "to watch n wait, have 6 monthly bloods, and (be) discharged!" is entirely appropriate, given about 30% of CLL patients never need treatment and those that do eventually need treatment are currently best managed by delaying treatment until absolutely necessary. There's a further complication in that a small percentage of us are diagnosed with SLL (Small Lymphocytic Lymphoma), where the clonal B Lymphocytes preferentially collect in the lymph nodes and are either absent or present at very low levels in the blood.

I hope the above helps you appreciate that matters aren't as simple as you might have expected. I also hope that you get some much needed answers from your private consults with endo and haematologist specialists, but don't be surprised if your private consult with the haematologist results in the same watch and wait with 6 monthly blood tests recommendation. Hopefully you'll get a positive outcome from your endo consult which will have you feeling good again, because with CLL/SLL, many of us have to put up with fatigue symptoms which can't readily be improved...

Neil

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It did cross my mind yesterday that I have to see him again next month. If it was as simple as saying fine you don’t have CLL you don’t have to see me again. But he didn’t say that now I’ve got it into my head he’s going to hit me with something else. Could be watch and wait been having bloods done every two months mainly because my sister had AML but they tell me that’s a completely different illness from CLL. Here’s me thinking I’m out of the woods but I’m not really am I 🤔

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i believe Lymphocytes can be raised if you have a virus.

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That’s true Loretta a virus or an infection. I did have shingles two years ago I had a bacteria infection in my stomach last year. I did ask my GP could it be that that’s causing the raised WBC he said no definitely not that it’s an entirely different thing . Which makes me wonder why was he so sure that my raised WBC had nothing to do with the infections I’d been having 🤔

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I have been reading about the Epstein Bar Virus and the link with heavy metals which cause cancers. I have been released from yearly hospital visits, so I guess I must be non progressing, they don't tell me much. Hospital doctors seem so young and they seem very unsure when asked questions. I read as much s I can and always take the blood results home with me, I also try different protocols to try to help myself. Not sure if it helps but anything is worth a try.👍👍😀😀

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Yes, smoking does cause raised lymphocytes. Before I was diagnosed my hematologist told me that it was very common, but he also was testing for CLL. And of course that it was it turned out to be - but I quit smoking anyway!Kathy

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I live in the US which has an online record. It’s great but we found out that way that my husband had cll. It would have been better to find out from the doctor. Anyway this sounds a little nutty. Do you have options to go elsewhere?

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Hi again Cathbrg

I agree with comments made by others here about the negative impact of separating trusts at a financial and service delivery level. This leads to regional and inter regional variation in patient care which is not fair and confusion for all.

As a retired NHS professional and a patient I have experienced this from both sides of the fence. In both it is equally confusing and frustrating.

As patients we do have to be our own advocates. This is difficult when well in this complex system let alone when ill.

PALS can help as can Macmillan for cancer patients.

When I had a problem about a year ago I took it to one of my previous specialists who kindly took it up on my behalf.

My advice is if you do have a problem or are confused do speak up don’t let it drop. If you can’t do this for yourself for whatever reason find someone who can.

If it is about your own specialist services or GP seek outside help and advice.

This forum is a wealth of support and information so you did not come to the wrong place.

Good luck and take care

Ann

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Make a trip to the hospital. Go to medical records and request a copy of your blood record. It really is that simple. My hospital will charge $10 for that, but worth it if you are anxious. More recently my hospital initiated an online medical database (MYCHART) that we can access the results of tests, and I can have my blood test results within an hour or two of having blood drawn. Free of charge and very informative.

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As a person with CLL, trying everything in the world to survive and thrive, it is hard for me to wrap my brain around smoking......quit smoking and become an advocate for your health and well being.

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Thankyou everyone for your support and input very much appreciated. I’m thinking of seeing my GP this week he said he can access the blood results at the hospital will be interesting to see what he comes up with if anything. Over the past two and a bit years there’s been so much to deal with, I had shingles then PHN had UTIs helicobacter infection the tiredness the sweating the headaches keep coming out in sore itchy spots sleeplessness depression anxiety . Prior to all of this I was an active person not one for sitting around now I rarely leave my bed and do very little. Even hobbies like knitting and sewing reading painting have all gone can’t seem to bring myself to do anything . I did have bowel cancer back in 2002 then my sister had AML we’ve lost so many friends to cancer and both our dogs had to be put to sleep both had cancer. It’s been one thing after the other don’t seem to have much fight left in me but I’m still here a bit wobbly and broken but still have all my marbles I think 🙂

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CLL is very manageable! You need a biopsy of a lymph node! best wishes

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My trip with CLL, "How I Learned to Stop Worrying and Love the Bomb". You can do this to, because the more you learn about the unknown the better you will feel. Everyone has something medically wrong with themselves, sometime it is not obvious.

I do have some suggestions to quite smoking. Just about every doctor will ask you if you smoke. I quite smoking in 1991 so not an odd question to me. I smoked 2-3 packs of cigarettes a day. Loved smoking, was only employee who smoked in entire office complex. My wife and I decided to quite smoking so that kids would not smoke, didn't work. You are going to encounter things that stress you, which is when You will really want a smoke. You need to develop something to take your mind off the smoking and reduce your stress. I had an oak stump out back and kept a hatchet by my desk. Every time I would get stressed and want a cigarette, I would go outside to stump and work on it with hatchet. Chopped whole stump out in three days. I also used nicotine patches which worked great for me to stop craving. Only did high and low dosage patches for 5 weeks until stopped patches. Have not wanted cigarette since, best to you, it can be done.

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Tomorrow I stop smoking 😳 I think 🤔 I have a vape pen with CBD so that’ll help replace the habit plus the CBD may help with withdrawals etc. I’m unsure but what I read online it’s the nicotine in the cigarettes that causes the r

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Never let me finnish lol yes it’s the nicotine that causes the raised WBC I think so it wouldn’t be a good idea to get patches or gum

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You made the biggest step to quite smoking, by picking a day to quite. "Hardest easy thing I ever did". If I had known it was going to be so easy, I would have quite sooner, but it was so hard I never want to start smoking again! You can do this!

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Sorry Cathbrg, but from the studies done in the US, the worse thing you can do is vape, as a replacement. The chemicals in valuing are much more harmful than a cigarette.

Please consider joining a hospital run Tobacco cessation class. I did. I learned a lot about the disease called addiction. I learned that my first quit (cold Turkey) is common and there are very few who do it. ( I started smoking again after 6, almost 7 years). Worse, there is some literature that suggests illness is very common with people who restart Tobacco.

The tobacco cessation classes were in a group session. When I thought my questions would be stupid or rebellious, there was someone else who would ask. And, the nurses running the class had heard everything.

The nicotine patch is not meant to keep your addiction going. You will be taught how it works. Suffice it to say, I now get queasy with the nicotine lozenges. When I started I was using the patch and 2 lozenges at a time.

If you really want to quit do it the right way. Take the month long course and learn how to quit in a healthy manner, while in a add setting with people going through it with you. I still message my nurse when I get a craving.

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Hi Cjmc12 I won’t be vaping nicotine as in cigarettes it’s CBD e-liquid there’s no nicotine in that. CBD is from the cannabis plant and is said to help with various things ie pain anxiety depression etc. It’s totally different from e-cigs .

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First, I am absolutely astonished by the unresponsiveness and insensitivity you encountered just trying to get blood test results.

After approximately 6 MOS of a declining hemoglobin count (down to 7+) I was referred to a locally distinguished Hemotologist, who within one hour diagnosed my CLL and started me on Prednisone immediately. Now, 6 MOS later, my hemoglobin has been stabilized at 12+, and Prednisone intake has been substantially reduced progressively. Next month I see my Hemotologist and am anticipating a further cutback in my Prednisone intake and being totally off of it soon thereafter even though I will still need to be monitored regularly. Afterall, the "C" stands for Chronic.

Again, I regret that you've had the difficulties you so well described.

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I'm from the US. I had blood work done on a Friday and that Sunday morning I received a call from a doctor in my primary care doctor's office that something was wrong. Now when I see my hematologist. I get labs done first and he gives me the results when I see him. Same day. I smoked until 2005. All the lab work I had done before that there wasn't any issued with my lymphocytes. I'd try to find another doctor. Cindi

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Dear Cathbrg,

They’re stupid! I’m so sorry you went through all that. Two or 3 really( including your GP) handled your situation very very badly. I’d be mad and try another hematologist.I know, it’s another one, but there are good ones out there.

I don’t smoke. For years they didn’t treat my CLL until I got really sick 4 1/2 years ago when my white blood cell count got to 90,000! Normal is 4-10. I know my lymphocytes were high too but I think in CLL it’s the white blood cells getting so high and how sick you are is when they treat you with Chemo. And don’t worry, I only had IV chemo once cuz now they have chemo capsules and after a year on them my cancer is stable. I’m sorry I don’t know too much about only the lymphocytes being high, but I guess it Maybe was just once since they told you you don’t have CLL but they want to keep tabs on it just in case. Don’t worry.even if you had CLL ,and you don’t ,you can live a pretty normal life with the new chemo pills! Just get tired, side effect of the pills. To tell you the truth my IC keeps me in bed with pain so much more then my Cancer ever did!

Haven’t been on this site lately cuz I’m busy going to Drs. , babysitting my grandkids or in pain with my IC so it’s hard for me to text. Just don’t worry. It was just once then it went back down.That’s what it sounds like to my. Maybe they’ll check it down the line but I think It will be fine no matter what happens. I hope this text puts you at ease. I think they want you to not smoke cuz it’s unhealthy in general but I don’t think it affects the lymphocytes. Just my opinion.

Last thoughts are you have to go through a lot of really bad Drs.until you find one that’s competent.

Good Luck Cathbrg in all your health,

❤️GailCat3

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Thanks GailCat3 my lymphocytes have been raised for 15mnths now they have diagnosed lymphocytosis butvthats all. My GP did speak to me about chemo telling me you just take a pill everyday plus that he had other patients in the surgery with CLL and they manage the illness quite well. Why he was telling me all this beats me. According to one hematologist my GP should never have mentioned CLL to me and neither should he have referred me to a hematologist. Anyway I see my GP next week and the hematologist in three weeks I think it is. So hopefully will know better what’s going on. I have been researching a lot and now I’ve found that mental emotional stress causes raised lymphocytes and I’ve had bucket loads of that for a long long time . . . Worrying about having CLL is has been a worry I remember thinking around xmas 2016 that I was getting a bit better after having a bad dose of shingles they had put me on Lyrica and I wasn’t doing well on it at all went to my GP and they did a blood test and from then on they’ve been checking my blood every two months worrying me sick. The thing is I still feel unwell so tired I sleep so much plus the sweats and all the other stuff depression has set in bigstyle. but maybe there’s another reason for all of that. Hopefully will find out soon 🙂

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Hopefully you’ll get answers soon,Cathbrg. Whatever the cause I hope you get to the bottom of your tiredness and sweating. Do you get sweating continuously or like flashes of sweating? I didn’t know there was such a thing as lymphocytosis. If you have that maybe your tiredness and sweating is due to that.If you can , keep me posted on what happens at your GP and hematologist cuz I care.

❤️GailCat3

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Thankyou GailCat3 I’m so confused with it all. The sweating comes on at various times day and night was bad yesterday sometimes it’s okay for a couple of weeks then it kicks of bad again. I’ve been wondering even if it was shingles that I had. Reason being when I was first diagnosed and the spots erupted my gp wanted to see it. I went to the surgery she’s looking at it saying it’s very weird very bizarre and she said vasculitis then she said no shingles. She prescribed me antivirals. I’m questioning her diagnosis and beginning to think that it may have been vasculitis. I took a pic of the spots and to me it looks a lot more like vasculitis than shingles. So they may have been barking up the wrong tree all this time. Vasculitis causes raised lymphocytes plus a host of other things very similar to all of my symptoms. I don’t believe that it’s smoking that’s caused all of this. Had I just had raised lymphocytes with no symptoms then yes maybe it’s the smoking but we’ll see can’t wait to see the haematologist to see what he has to say. Thanks for caring GailCat 3

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Just an update to let you all know that the hematologist called yesterday to tell me he doesn’t think there’s anything seriously wrong with me so appt for next week is cancelled. Coincidentally half the hospital was closed last week due to an outbreak of Noro Virus surgeries cancelled visiting restricted etc. 🙄 He’s going to write to my GP to let him know and also to tell him to keep an eye on things doing bloods every now and again. So I’ve spent the past 15 months worrying for nothing. Lesson I have learnt is to take everything my gp says from now on with a pinch of salt . Not sure if I’m 100% convinced what I’ve been told is true some of it maybe. Hematologists first words to me were there’s no cure for blood cancer and we don’t treat it. Considering the state of the NHS it’s more than likely they can’t afford me plus I’m 71 and keeping an eye on me covers their backs 🤔 so I’m not going to worry about it anymore 🙂

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I'm glad to hear that you've got an answer of sorts and there is nothing serious to worry about.

Enjoy life!

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