UK CLL Forum, UKCLLFORUM

Just been told - confused.com!

Topic Made On: Jun 26, 2015 08:09pm
andym

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Posts: 2
Hi all, I'm a little shocked, but trying to find out as much as I can. I'm 56 and had a recent over 50 NHS check. Everything fine, just a bit overweight so potential diabetes risk. The nurse suggested taking a fasting blood test just to check everything which we did. Got a letter yesterday asking me to make a routine appointment with the Doc. I thought, oh oh, looks like I might be getting a bit of a dressing down because my sugar level is high or something. I managed to get an appointment today as I was a bit worried and didn't want to wait the normal two weeks at our surgery for a routine appt. The Doc looked at my results and said my white cells were high and what did I know about Leukaemia, well, I wasn't thinking of 'that' leukaemia so I said I don't know anything. He then went on to explain that they think from my blood tests that I have CLL. Blimey, where did that come from? To say I was a bit gobsmacked would be an understatement, but I'm sure you have all had that feeling! Still can't get my head around it as I have absolutely no symptoms at all, which I understand is common. The doc has referred me to the Haemo, so I'm not sure what happens next. Is there a chance that the white cell count could be down to something else? So, I may have CLL, but hey, my cholesterol level is really good!




Replied On: Jul 02, 2015 06:59pm
steve y

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Posts: 18
Hi andym,
Sorry to see you here as being diagnosed with CLL,
i too was diagnosed with a routine blood test about 16 months ago.
My Father had just died the month before and I had just gone through a particularly stressful time with a marriage break up. I was lucky to find a new partner and things were going great after a bad 6 months relationship wise.
My new partner had noticed raised glands on my neck and I had been feeling fatigued but put it down to old age , I was 54.

A full blood test found that I had CLL and It was the last time I saw that particular GP as I had already moved to Coventry with my new partner.
I feel grateful to him for his diagnosis and his advice to me (and I pass to you), research GP,s, if necessary move to one who has a specific interest in Leukaemia, If possible. Research consultants too, find a good one in your area.
I was told with CLL it is often "watch and wait", perhaps for a year or two, with regular bloods being taken.
My White cell count or more precisely, Lymphocyte count doubled over the next six months. This along with the usual CT scan ,showing several areas of Lymph nodes and swollen spleen, triggered the decision by my consultant for Chemo.
June 2014 saw the start of six months of Chemo (FCR). This meant monthly trips to the day unit for a Rituximab infusion, followed by 3 days of tablets at home, along with the usual antibacterial, antisickness and anti Viral tablets.
The six months, on reflection were not too bad, apart from a week stint in hospital with a Neuropinic infection, which saw my temperature rise to 39.4 C.
Needless to say, I got through it, I was glad that my last month of Chemo came and went, some days I felt rough but learnt to go out and enjoy the good days.
It is now six months since my Chemo and I feel great, yes, It is likely to return, in an average of about 5 years or so but I am ready for it.
I have plans for the future, getting married again in September to my beautiful partner who has stood by me and helpede me through the last few months. I feel better than I did before , apart from being unfit, I used to be very athletic and fit but the past year I have not felt like doing too much, coupled with a different lifestyle, well fed and enjoying the pleasures I used to take for granted, a little too much!.
I have just this week joined a gym so hopefully going to get back on track.

If I were to give advice it would be-

Ask questions about everything.

Dont read too much on the internet, especially the gloomy stuff, most is out of date and even since I finished my Chemo, there are really promising new drugs out there.

Stay healthy, even if its just cutting out some of the crap food and replace with vegetables and fruit. A lot of people on this forum will tell you of the benefits of healthy eating.

Find support from your Family and friends and remove the stress from your life, you dont need stress.

Research your Consultant and Hospital, aim to find yourself the best.

Enjoy the well days, especially If you start Chemo, set yourself up for treats as rewards, weekends away etc.

Try to keep yourself well, If a friend invites you to a party and he has a cold, dont go. Your immune system will be down and can develop into something more serious and a real friend will understand.

This Is a good site to start your journey on, a lot of knowledgeable people and willing to share , good luck and try not to worry, I remember only to well that "Gobsmacked" feeling but its surprising how a little knowledge and understanding helps

Finally , all you guys on Chemo at the moment, there is light at the end of that tunnel, I feel fantastic, (ok I get a little fatigued at times) but keep your spirits up and may you all feel as well and happy as I do at the moment.

Take Care All

Steve
Coventry



Replied On: Jul 03, 2015 12:30pm
Pauline007

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Posts: 3
Wow Steve, that's the best advice anyone could give. Your reply should be on the front page of this forum for all to read. Hope you are keeping well.



Replied On: Jul 03, 2015 05:21pm
Admin

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Posts: 96
Posted on behalf of a member
+++++++++++++++++++++++++++++
Dear Steve,
Thank you very much for your advice on living with cancer. My feelings are very similar. My husband was diagnosed as having CLL six years ago. For the first five years he was on "watch and wait" but has developed quite severe symptoms for the past year.
The care he has received at Southmead Hospital in Bristol has been excellent. He has received care from the Haematology team and at various he has also received care from the respiratory department, the surgery team. Different treatments have been given and the route forward seemed clear with Retuninib. Unfortunately his condition has changed from CLL to PLL so that drug will no longer be helpful.
Has anyone any experience of PLL? Best wishes, Jane Dennis



Replied On: Jul 03, 2015 07:04pm
andym

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Gender: Male
Posts: 2
Steve, many thanks for your advice, that is all very helpful and in some way a little assuring. It's been a week now and my mind still wanders at the moment. I have given the gym a miss this last week, but will get back in there soon. My other half has been up and down, but we will get our heads around this and be positive. Thank you for taking the time to fill me in with the details. I have an appointment in a couple of weeks with the haemo dept so will hopefully get a bit more info from that. Cheers all



Replied On: Jul 16, 2015 10:31am
Yanni

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Gender: Male
Posts: 15
Hi andym
I was dx back in 2009 with CLL with high WBC since 2007, still on stage 0 (A) with better WBC counts today. I personally treat my "CLL" as an infection. I have self experimented with very high Vitamin D3 with separate Magnesium Citrate intake and have found a reversal and stabilising the Lymphocytes in the process, I combined this with a low carb diet (Ketogenic)and I found that combination worked well for me.
There is a lot of detail which is difficult to share here but please ask your Doctor to test the Vitamin D level, the test is 25(OH)D3 (hormone metabolised in the liver from Vitamin D) please note not the 1,25(OH)D3.I try and maintain a level around and above the 200nmol/L were I find it makes a difference, but that is way above the NHS guidelines so work with your doctor, blood calcium levels must be monitored at the same time to ensure no hypercalcemia occurs, I ensure this does not happen with me by NOT supplementing with calcium and get my calcium from my diet only, I achieved a level of 569 nmol/L of the hormone 25(OH)D3.
Over the last 3-4 years even though I was able to demonstrate that I was able to reverse my lymphocyte counts and also proved I could increase them by reintroducing sugar/carbs/Starches and then reverse them again by returning to the strict diet, I could not decrease the WBC below the 11000 mark even though I reached it in Jan this year, this has convinced me that I was fighting an infection, you see Lymphocytes react to several infections besides the name tag of CLL, bacterial infections for instance. My oncologist insist that according to the Flowcytometry CD markers I have CLL and yes if you look at his training method that is so, but I have also managed to connect the same CD markers to Chronic Periodontal infections. So I then decided to look at my mouth and dental area to find the connection that drives and maintains my WBC above normal. I had been trying to get my dentists over the last 10 years to remove a gold crown which was bothersome but after xrays were taken the dentists all said that the root appeared healthy and their assumption was the tooth was, but the xrays do not penetrate the gold so they can not really see inside. My last dentist early this year did a small repair on the gold crown by removing a amalgham filling which should not have been there in the first instance (gold and amalgham should be kept apart)and agreed that if the tooth was still bothersome she would remove it.
Well 3 weeks later the crown was removed to expose a black rotten tooth that had to be extracted bit by bit with further surgery to remove the roots that had fused with the jaw bone, it is this infections that contribute to the driving of my WBC counts and the sugar high carb diets that fuelled them.
Since the removal of the crown I cannot explain how much better I feel,I will not go into detail but the brain fog has gone, I can now enjoy sugar or wine without a nervous and skin reaction etc etc.
Now I do not want to say this is the case with all of us but it will help if all of us helped ourselves a bit, the W&W routine does nothing for us. I am presently trying to get my gums in the best condition possible before my next counts in September but I am in a chase my tail situation, my dentists guidelines state a good clean every 4 months will do it even though there is a improvement it obviously is not working, my doctor will not prescribe medication but has to refer me back to the dentist and it is no use mentioning it to oncology they are too busy looking for that ever eluding gene. It is this situations which highlight the useless approach to CLL which is called Watch and Wait which for me relates to Wait and watch your counts go up by doing nothing.
I also have information which explains the connection between the protection offered by Vitamin D3, chronic periodontal infections,my CD markers, baterial infections in particular H.Pylori which use our tooth plaque as resevoirs, the CD markers that relate to both Periodontal infections and my so called CLL.
Please note I personally have proved the above can work for me in the early stages without having had any Chemo or treatment, I personally do not know if it will work on anybody post Chemo but have had other CLL friends who have reported similar results.
My advice look at all the problems skin infections anything that connects them find your source of infection if that is the reason of your high WBC ?, My remaining skin issues on my face have now dissappeared since the removal of the tooth, I have last month on a holiday to Greece had excessive unprotected sun exposure on purpose but with very high 25(oh)d3 without any new "keratosis" but actually an improvement. You see my skin specialist refered to my facial skin issues as Solar Keratosis, solid basal Carcinoma etc blaming it on the sun, well it was that infected tooth not the sun in my case.

Kind regards and wishing you well

Emmanuel



Replied On: Jul 16, 2015 10:38am
Yanni

Offline
Gender: Male
Posts: 15
Hi andym
I was dx back in 2009 with CLL with high WBC since 2007, still on stage 0 (A) with better WBC counts today. I personally treat my "CLL" as an infection. I have self experimented with very high Vitamin D3 with separate Magnesium Citrate intake and have found a reversal and stabilising the Lymphocytes in the process, I combined this with a low carb diet (Ketogenic)and I found that combination worked well for me.
There is a lot of detail which is difficult to share here but please ask your Doctor to test the Vitamin D level, the test is 25(OH)D3 (hormone metabolised in the liver from Vitamin D) please note not the 1,25(OH)D3.I try and maintain a level around and above the 200nmol/L were I find it makes a difference, but that is way above the NHS guidelines so work with your doctor, blood calcium levels must be monitored at the same time to ensure no hypercalcemia occurs, I ensure this does not happen with me by NOT supplementing with calcium and get my calcium from my diet only, I achieved a level of 569 nmol/L of the hormone 25(OH)D3.
Over the last 3-4 years even though I was able to demonstrate that I was able to reverse my lymphocyte counts and also proved I could increase them by reintroducing sugar/carbs/Starches and then reverse them again by returning to the strict diet, I could not decrease the WBC below the 11000 mark even though I reached it in Jan this year, this has convinced me that I was fighting an infection, you see Lymphocytes react to several infections besides the name tag of CLL, bacterial infections for instance. My oncologist insist that according to the Flowcytometry CD markers I have CLL and yes if you look at his training method that is so, but I have also managed to connect the same CD markers to Chronic Periodontal infections. So I then decided to look at my mouth and dental area to find the connection that drives and maintains my WBC above normal. I had been trying to get my dentists over the last 10 years to remove a gold crown which was bothersome but after xrays were taken the dentists all said that the root appeared healthy and their assumption was the tooth was, but the xrays do not penetrate the gold so they can not really see inside. My last dentist early this year did a small repair on the gold crown by removing a amalgham filling which should not have been there in the first instance (gold and amalgham should be kept apart)and agreed that if the tooth was still bothersome she would remove it.
Well 3 weeks later the crown was removed to expose a black rotten tooth that had to be extracted bit by bit with further surgery to remove the roots that had fused with the jaw bone, it is this infections that contribute to the driving of my WBC counts and the sugar high carb diets that fuelled them.
Since the removal of the crown I cannot explain how much better I feel,I will not go into detail but the brain fog has gone, I can now enjoy sugar or wine without a nervous and skin reaction etc etc.
Now I do not want to say this is the case with all of us but it will help if all of us helped ourselves a bit, the W&W routine does nothing for us. I am presently trying to get my gums in the best condition possible before my next counts in September but I am in a chase my tail situation, my dentists guidelines state a good clean every 4 months will do it even though there is a improvement it obviously is not working, my doctor will not prescribe medication but has to refer me back to the dentist and it is no use mentioning it to oncology they are too busy looking for that ever eluding gene. It is this situations which highlight the useless approach to CLL which is called Watch and Wait which for me relates to Wait and watch your counts go up by doing nothing.
I also have information which explains the connection between the protection offered by Vitamin D3, chronic periodontal infections,my CD markers, baterial infections in particular H.Pylori which use our tooth plaque as resevoirs, the CD markers that relate to both Periodontal infections and my so called CLL.
Please note I personally have proved the above can work for me in the early stages without having had any Chemo or treatment, I personally do not know if it will work on anybody post Chemo but have had other CLL friends who have reported similar results.
My advice look at all the problems skin infections anything that connects them find your source of infection if that is the reason of your high WBC ?, My remaining skin issues on my face have now dissappeared since the removal of the tooth, I have last month on a holiday to Greece had excessive unprotected sun exposure on purpose but with very high 25(oh)d3 without any new "keratosis" but actually an improvement. You see my skin specialist refered to my facial skin issues as Solar Keratosis, solid basal Carcinoma etc blaming it on the sun, well it was that infected tooth not the sun in my case.

Kind regards and wishing you well

Emmanuel



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