UK CLL Forum, UKCLLFORUM

New to Forum and Newly diagnoised!

Topic Made On: Nov 19, 2015 12:36pm
JAYNEC

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Hi everyone,

I was diagnoised with CLL last December (10th) 2015. I am a female living in Lincolnshire and I was 55 when told. My reading was 10 instead of the normal 4, I think this is the Lymphosite part??. About 11 weeks ago it was 23. Will let you all know when I get next results early December what they are.

I also have Type 2 Diabetese (for which I take medication) so it was found during routine tests. I had been ill on and off for two years and had been sent for various stomach scans and a leg scan I just thought I was getting excellant treatment! Turns out they knew I had CLL for 2 years and had been monitoring me? Stomach scans were because my stomach swells up and I could sit a cup on it as if I 9 months pregnant. This happens on and off and I haven't as yet found a trigger for it, or a reason for it.

I saw a consultant at the hospital and was sent for 12 weekly blood tests (after the initial ones were sent to Leeds for anaylsis) and I am on watch and wait. The hardest part of all this was telling the kids, and my bosses insisting that everyone at work knew!! My tests now are at my GP surgery with my other blood tests and getting information out of them is hopeless. I asked the last time for a copy of my blood results and couldn't understand them neither could the nurse who gave me the results! I have also signed up to have my excess blood test used for medical research.

I was worried about finances and how long I could work for so I applied for PIP, guess what I scored `0` apparently you need at least 8! Realistically this new scoring system you would need to be at deaths door to be able to get anything. If any of you know differently let me know.

I have worked since I was 12 years old and am still working part time in an office environment, but I have to work full time to cover for others and find this too much, so I am seriously considering giving up work. Currently I manage to do my work, although there are days when I struggle to walk the 0.3 miles too work. My house is a tip as I can't remember the last time I had the energy to do it. I normally fall asleep in the afternoons!! My washing now gets done on good days as I need them clean for work. I have cut back on some of my hobbies and voluntary activites due to tiredness. My bones ache and does this sound mad to anyone - I am not a small lady used to be size 22 and my trousers are getting very loose (now need 18)! my top half is often swollen and larger so still need the (22 still)many days these are loose and flowing though. My forehead, arms and legs appear to be getting slimmer as I can feel the bones more?? my neck is nearly as wide as my face too? The pads on my hands are all puffy and very hot? I have sweats during the day and night which makes my forhead wet, yet my temperature is still normal??? I have two fans at work running on and off all morning!!

I have spoken to the hospital about fatigue and tiredness and they say it won't be CLL it will be diabetese. I spoke to GP about the same thing and they said it won't be diabetese it will be CLL?

Things to help me - I have been taking off my own bat - 1,000 Vitamin C a day with 25 echincea drops + 2 Vitamin D tablets a day since last year when I caught bronchitis 3 times in as many weeks! Since then I have had the start of colds and sore throats but managed so far to keep them all at bay. I have attempted swimming and Zumba to improve my stamina but this just makes me more tired.

Any help and advice about any or all issues mentioned above would be greatfully received. Looking forward to getting to know some of you over the next few years.....

Cindy




Replied On: Nov 20, 2015 05:11pm
Wiganfan

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Hi Cindy, sorry to hear about your situation.
My advice is to try Vicks First Defence to prevent contracting colds etc. It is a nasal spray which can be used immediately you feel a cold starting and/or as a form of protection when you are going to be in the vicinity of a lot of people or someone with a cold. I was recommended it and have found it to be effective.
Another forum worth checking out is Health Unlocked.
Best Regards Ian



Replied On: Nov 22, 2015 09:42am
steve y

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Hi Cindy, I am a similar age and was diagnosed after routine blood test in October 2013 ,by June 2014 my blood count had doubled, along with several raised Lymph node enlargement sites and swollen Spleen triggered my first round of Chemo (FCR)which started in June 2014 and finished January 2015.
Before Chemo or diagnosis the only symptom I had felt was tiredness, I would have never guessed I had CLL.
Through Chemo, or perhaps of the disease progression I had regular night sweats and acute bouts of tiredness.
I can confirm tiredness is a symptom or result of CLL . After Chemo my tiredness is not half as bad but I found exercise, ie walking and naps when needed helped.
I must admit I have and never had any other illness as you so can only sympathise with your "double" condition.
My GP has not really been involved just my consultant at Coventry Hospital , where I still have 3 monthly checks and a 3 monthly meeting with my Consultant. I am aware though that differing areas of the Country have different levels of service. I feel fortunate to live in a area with a good Hospital.
I have rarely seen my GP since diagnosis, always seeing my consultant, I have found a few of the GP,s in my practice know little about Leukemia. It is important to research and ask for a GP who has some knowledge of Blood Cancers and is important to research consultants too as we do have choices, which are not always advertised to us. I believe.
As for employment, I am lucky to have understanding bosses but we are helped in some way by recent legislation regarding Discrimination and people with cancers, I believe bosses do have go be more flexible now and a quick look on the web found this information , which is a little outdated but a start

http://news.bbc.co.uk/1/hi/health/5402554.stm

I believe in both cases ie, choice of hospitals and consultant's and job wise, we have to have the knowledge to enable us to find the best treatment we can.
I am glad you found this forum as there are people here who are informed and can offer advice.
Kind Regards
Steve
Coventry



Replied On: Nov 23, 2015 09:12am
pendle witch

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Hi Cindy,

Sorry to hear about the rotten time you're having. Perhaps if you can get your diabetes under control, that would be one thing less to burden you? You may have seen in the press and on TV recently that intermittent fasting can bring type 2 under control. My mother also suffers from type 2 diabetes and as I have been doing the 5:2 fast diet for a couple of years, I know it is easy to follow, so I suggested she gave it a go. It worked!
She is mediation free and feels well. Research shows that only eating 500 calories a day for 4 days before chemo also gives better results.

I suggest you buy The Fast Diet book and also The China Study. Both these books have been life changing for me. I was diagnosed in 2010, but have probably had the condition since 2007, when my GP first noticed, but didn't say. My WBC is now 33, but I feel well and, touch wood, don't have any symptoms. I am 56 and have a demanding full time job. I attribute the fact I feel so well to the intermittent fasting and following the regime recommended in The China Study, though I don't follow it strictly.

Give it a go, you've nothing to loose and I really hope it helps you the way it has helped me.

Good luck.

Pendle Witch





Replied On: Nov 23, 2015 10:53pm
JAYNEC

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Pendle Witch, Ian and Steve - Thank you all for your help and advice.

I will try Vicks first defence. I will also look into the recommendations from Steve. Hope your treatment is continuing to keep you on track. Do you all have your flu jabs?? I've had one every year for years, but this year I had to ring my Macmillan nurse to get the okay before my doctors would do it?? Have any of you had the pneumonia one? That put me in bed for two days, couldn't lift my head off the pillow!

I am surprised about the fasting information for diabetes's as I have been told never to skip a meal, I was told the reverse in fact and that was to eat carbs at all three meals and my weight hasn't changed for years until now, my weight is going down without any changes to my diet??I will however look into it, as I am open to anything that will help reduce my symptoms.

Also, with the new rules on having 5 to drive if a person with diabetes skips meals they will soon find themselves in prison!! If you get caught driving with blood sugar less than 5 you now get done for driving under the influence of drugs and two other offences. Also I have been diabetic for many years, it is hereditary within my mothers family and my middle daughter has it too! She has been told she will be on insulin soon. Mine has got gradually worse over the years and I have been told by my nurse that there is nothing wrong with my diet?? Also I was told not to loose weight as with CLL they don't want us to loose weight?? My diabetes stays under control for a while then it just gets worse at one test and they then change my meds....had a few changes over the years. I don't eat sweets, or take sugar and have never had sugar in drinks. I prefer Lemons and grapefruit to chocolate cake and if given a choice I always went for cheese and biscuits instead of a dessert. I know people who drink loads of Coke everyday and take three sugars in their tea and eat enough for 3 people in one meal yet they aren't diabetic. Only age related Type 2 diabetes I believe can be controlled with diet alone, I could be wrong.

I have a blood test on Wednesday with results next week, might need some help to understand them as the person I see at the doctors now doesn't seem to understand them....my consultant at the hospital discharged me back to the GP for 12 weekly tests? Yet they don't seem to understand them??


Found my last results White BC = 28.9

RBC = 4.51

Lymphocyte = 25.04 ( when I was told last December this was 10)?? I know this should be 4!

But how and when do they decide we need treatment??

Do any of you get a swollen stomach? Like your nine months pregnant?? I get it occasionally, its so uncomfortable all my skin it tight, I feel so full I can't eat and I have to eat to take my meds!! Is this a symptom of CLL?? Also I get bad stomach cramps does anyone else??

Sorry to keep asking questions, but its difficult to know what symptoms are from which illness. When I was first diagnosed I gave my consultant two full A4 sheets of questions to which he just said bring them all up with my GP, which got me nowhere.

Thanks again for taking the time out of your busy lives to help me.

Cindy

P.S. Pendle Witch was your mum on much medication before she tried the diet? How long had she had diabetes?? Don't know how you find the energy to work full time, I struggle to manage 4 hours a day and when I get home I am fit for nothing!! Pleased you are so well with your illness, you didn't say what your lymphocyte count was?? I was only diagnosed on 10th December last year but they had known I had it for two years before anyone told me.



Replied On: Nov 24, 2015 05:52pm
pendle witch

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Hi Cindy,

Your post alarmed me and I wondered if I had got it all wrong. Check out diabetesselfmanagement.com for a good report. My mother was not on insulin, though I am not sure what she was on. Her blood sugar levels were regularly 10 or 12 but are now around 5. As you suspect, my mother's is age related, so it may not be the answer for you, sadly.

I don't get a swollen stomach, so I don't know what that might be. Someone else may come back to you on that.

Do you get a print out of you results? I never have. My consultant just reels them off and I can't remember all the numbers. I know the hemoglobin is slightly low and of course the lymphocytes too high, but I can't give you figures. I was told initially
that everyone's body reacts differently.

I believe treatment is decided on based lymphocyte doubling time and severity of symptoms, but there are others on the forum better informed than I am.

I really hope you can find a way to feel better, it sounds as though you are having a bad time of it.

Best wishes

Pendle Witch



Replied On: Nov 25, 2015 01:56pm
steve y

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Cindly, Pendle Witch,
I was told treatment ,is triggered by a number of things, which are, -
Lymphocyte count doubling over a six months period , plus various Lymph node site enlargment, ie, under arm, groin areas and Spleen enlargment.
Within the 6 months of my diagnosis I had met all these conditions
My lymphocytes count was over 200 but was told that even a much higher count alone would not necessarily trigger treatment.
I was told it is a bit of a balancing act regarding treatment and another indicator is the general health of the patient. It is a balance of being fit enough to receive the treatment well but not ill enough so you would find it harder to cope.
In all a bit of a balancing act and not a "one size fits all" situation.

I can concur with a previous post here that Northamptonshire is a good area to have CLL,. My old GP, in Daventry, Northants, picked up my symptoms of raised neck glands and sent of for the necessary tests and when they came back as CLL, he was able to put me on the right road with follow up tests and advice.
I had already moved to Coventry a week before and had not yet found a new GP.
My Daventry GP parting advice was to "research and find the best Consultant Coventry could offer and choose my GP surgery well, ie choosing a GP with knowledge of Blood Cancers.".
He admitted there were good and bad practice's

I found an excellent consultant in Coventry, although unfortunately, he has now moved to Australia but his replacement seems fine.
My GP has an interest in Leukemia, although unfortunately due to changes our surgery works, it is a bit of a lottery which GP I speak to.!
One GP openly admitted she knew very little about CLL, which is more worrying when it appears GP,s are going to be asked to analyse our blood results!.

I have not had much trouble with my stomach, apart from when I was on my Chemo . I had chronic constipation one month, probably because I was supposed to drink lots but didn't drink enough.
I have had a bad back for a month or so but this has been on and off Before diagnosed and according to my consultant nothing to do with CLL.
I put it down to getting older, less fit than I was and a lifetime of hard physical work.

I am hearing worrying comments on here recently.
Firstly we had drugs that have been trialed and accepted by NHS England now being dropped ( Ibrutinib), for , what looks like budgetary reasons.
Then we have GP,s having to analyse blood results, which was once the domain of Consultants.

I think it is important, when we have the opportunity, with our GP,s and Consultants to ask questions and not accept everything we are told, especially if we feel we are not receiving the treatment we deserve.
For instance, if I asked my GP for a copy of my blood results and he or she was questioning my reasoning, I would ask all the questions I wished and if my GP could not answer , I would politely tell them that I wished to have a copy to show someone with the necessary knowledge.
I realise we do have a NHS postcode lottery in this country and although I believe we have a NHS to be proud of I do fear for the future of it with its limited resources and growing strain.

Anyway enough of my rant, thank goodness for helpful forums such as this.
Kind Regards All
Stay well
Steve
Coventry



Replied On: Nov 25, 2015 07:14pm
JAYNEC

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Reply Hi Pendle Witch and Steve from Coventry,

I found out from somewhere else on the internet that you can request a copy of your results so I asked the last time when the nurse I saw didn't know what she was talking about. You medical files are about you and you are entitled to see anything in them and even have a copy if you want, they might charge for your full records!

It does depend what type of Leukaemia you have and how up to date your consultant is. I have a friend who had a worse sort than CLL he was told he had 2 to 5 years to live. He is still with us 17years later. He has had rough times and then they have found a new drug and he has been given trial drugs and lots of bone marrow tests to aid future drug treatment for others. He is on his final type of drug now! However he told me one consultant told him very early on to take Vitamin D to help immunity so I thought it won't do any harm so I take 1,000% DRA of Vitamin D and 1,000 Vitamin C a day. It appears so far to help as I haven't caught colds and coughs this year so far, will let you know if I manage not to get Bronchitis again this year. I had it three times last winter. My friend says he owes his life to his consultant that was not only interested but also researched new drugs that my friend found out about from friends in Scotland and got him to agreed that he could do a trial in England as long as he went to Leeds for bone marrow tests too! Why Scotland get things before us I don't understand, but he has since moved to Scotland and gets excellent treatment. It was great having someone to talk too when I was diagnosed but his is different to ours so I am very pleased to have found this forum where I can get help from people with a similar if not the same experience.

Re: Diabetes - My blood in old money as I call it; Pendle Witch is 14.9 before I eat anything My last test through the doctor was in new measurement 61! This is high I know even with my medication so hoping now they have increased it again this new result next Wednesday hopefully will show an improvement. Will look into your recommendation too.

Will post my CLL results when I get them. I have normal blood pressure luckily and my cholesterol is fine so some positives. It is just the unknown and the what ifs that are hard to take. Getting my head around it more as I am talking to all of you who at least understand where I am coming from.

Thanks for your help and advice.

Cindy



Replied On: Dec 02, 2015 05:27pm
JAYNEC

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Told you I would post my new results:-

WBC - 31.1

RBC - 4.66

Lymphocyte count- 26.21

My Blood sugar is now 66 which in old money they say is 8.9 yet they aren't altering my meds??

Told doctor about being tired he says is could be anything? Also now say they are worried about my Thyroid and Liver!!

Whatever next. Keeping a food diary for two weeks picking finger blood tests twice a day and seeing him again on 17th December. Next full bloods due end of February beginning of March!!

Had flu jab too today.

Will keep you all posted.



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