UK CLL Forum, UKCLLFORUM

Hi all,new to forum

Topic Made On: Apr 29, 2014 05:37pm
tonyd1959

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Hi name is Tony,im a Student Paramedic for the LAS,i was diagnosed about 3 yrs ago after having a heart attack,found while doing routine bloods,im in the active monitoring stage,havnt had any treatment yet.




Replied On: Apr 30, 2014 07:58pm
Kevin

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Welcome to the forum Tony, sure you will find us friendly and the info useful. Fairly new to the forum myself, joined in Jan this year or thereabouts. Personally I wished I had joined a lot earlier when I was diagnosed in 2008, it's nice to listen to other members stories and feel part of a community. I was on active monitoring (watch & worry) until 2011 then started FCR chemo for six months. That was two and half years ago now and I feeling a lot better and again on active monitoring. Fatigue is my only real downfall, but that does seem to play a big part in many of the forum members lives here. Good luck and lets hope you can continue on active monitoring for a long time to come.
Kevin (Harlow, Essex, UK)



Replied On: Aug 17, 2014 05:43pm
weelowry

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Hi guys, im new to the forum. I was diagnosed with stage1 CLL almost 5 years ago, im almost 50 years old. I get the usual fatigue and lethargy, but ive had cold symptom and sinusitus for the past 4/5 weeks which will not shift. Just wondering if anyone else has experience of this



Replied On: Aug 18, 2014 11:32am
Vepiskop

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welcome weelowry,
Are you on watch and wait or you have any treatment?
If it is persistent infection, you should go to your GP to take antibiotics. You immunoglobulins and neutrophils may be low and you cannot fight the infection on your own. I have been taking Immiflex which is an immune system booster and I swear that has protected me from infections and persistent cold virus throughout W&W and now that I am under treatment. It is a supplement that has also vitamin D3 and prevents you from infections viral and perhaps bacterial. Try it but this cannot replace antibiotics if you have a full blown infection already.

Alternatively, if your sinus problem is an allergy that now has worsen possibly due to progression of CLL, then you should be able to manage it. There are several drugs for this, but best to ask your GP to manage it. My CLL as it progressed, caused joint pain and stiffness. It is common that CLL progression is associated with allergic/autoimmune reaction.
By the way the use of Immiflex did not affect my arthritis or the progression of CLL. It simply protected me from infections.
I hope this helps,
good luck,
Vepiskop



Replied On: Aug 18, 2014 07:26pm
Kevin

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Hi weelowry, and welcome to the forum.

As Vepiskop mentioned, are you on watch and worry or have you had teatment?
I ask because shortly after my first (and only so far) round of FCR chemotherapy I developed cold/flu like symptoms but without the shivers and high temperatures. My sense of smell and taste had almost completely disappeared and I had a runny nose most of the time. After about two months of this I paid a visit to my GP who examined me and suggested I might have sinusitis. I was sent for further tests from an Ear, Nose, and Throat (ENT) specialist and was diagnosed with both sinusitis and nasal polyps. I can't say that these symptoms were anything to do with CLL or its treatment. My haematologist says definitely not directly but maybe indirectly as a result of a weakened immune system. The solution for me was endoscopic sinus surgery to drain the sinuses and remove the polyps from the nasal passages. It took a few months before I noticed any effect but then both my sense of smell and taste were back to normal and have remained so until this very day (Three years ago now). I still have to use a nasal spray (Nasonex) each day but that is not a problem.


Hope this is of some assistance

Regards Kevin (Harlow, Essex)



Replied On: Aug 24, 2014 10:29pm
weelowry

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Hi Kevin and Vepiskop, thanks for the replies. At the moment im on watch and wait, have been for nearly 5 years now. The cold symptoms have gone a bit but i still get very congested. The fatigue feels like its intensifying, no matter how much sleep and rest i get, i never feel refreshed or well rested. My next appointment is next month, at my last meeting, consultant says that he's satisfied i dont need any treatment yet. Tho he did sat that if my symptoms worsened, then not to hesitate to contact the clinic or MacMillan people. Any opinions you have on this would be most welcome....Thanks, David, near Glasgow



Replied On: Aug 25, 2014 11:33am
Chonette

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I used to suffer from congestion all my life, was always on antihystaminics and to clear the congestion of a cold would take weeks.

I discovered that cows milk produced my mucus, so some 18 years ago I had a complete cleasing and stop taking any dairy products for 4 months, then I slowly started to eat cheese and yogurt but changed to goat milk or an alternative milk. I have not had a congestion since then, I remember how it was no being able to breeth properly in those old days and now even when I get a cold I do not get so congested and if I do it clears up soon.
Regards
Chonette
PS.

I notice you live in or near Glasgow, CLLSA is having a meeting there, here are the details:

Invitation to the first CLLSA meeting in Scotland

Monday 22nd September 2014, 10.00am Ė 4.00pm
Grand Central Hotel, 99 Gordon Street , Glasgow G1 3SF

www.thegrandcentralhotel.co.uk

All members are invited to our first meeting in Scotland on the 22nd of September 2014. We are privileged to have Dr Alison McCaig MBChB, MRCP, FRCPath, PhD as our keynote speaker.




Replied On: Aug 25, 2014 01:45pm
Kevin

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Hi David,
If you haven't seen your own GP about the cold symptoms and the congestion I would recommend you do so. As Chonette has pointed out you too may have an allegy of some sort. It is worth having the symptoms investigated and properly diagnosed, it may (probably) be nothing to do with the CLL and can be treated independently. The fatigue you are suffering from is one of the most common effects of CLL, and is often coupled with low energy levels and extreme tiredness. Unlike Ďnormalí fatigue and tiredness it is not relieved by rest so even the most simple of daily tasks can become challenging. I find that as long as I donít push myself too hard and take a brief break when fatigue sets in I can manage my days quite well. There are some days when I wake up tired and fatigued and I know itís going to be one of those days where I must struggle just to get moving and I find myself having many resting periods and/or naps. Other days are trouble free or start well then rapidly decline and I have to have a rest or nap.
Fatigue can be experienced both physically and psychologically, so it can affect both your ability to do everyday tasks, as well as your mental ability. I personally have had really bad days where my memory has been so bad that I thought I was suffering the early onset of dementia or something! Fatigue from CLL affects people differently, and for some has no effect at all.
Regards Kevin (Harlow, Essex)



Replied On: Sep 20, 2014 11:25am
weelowry

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Good morning folks, had my 3 monthly check up on wednesday and things seem to have escalated.
My platelets have dropped to a count of 26, so my consultant hastily arranged a bone marrow biopsy and put me on a high dose of Prednisolone. As you can guess this came as quite a shock to me, ive barely slept since wednesday.Hopefully the steroids will help raise my levels again.
Just wondering how this treatment has affected anyone else on here. All replies very welcome.
P.S think i'll make the effort to attend the CCLSA meeting in Glasgow on monday.



Replied On: Sep 21, 2014 09:53am
Chonette

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Will be nice to meet you there, have you registered? I am flying over this morning, hope to see you there
Chonette



Replied On: Sep 21, 2014 10:40am
8167helen

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You don't say how much prednisilone you are taking, my husband was on 100mg a day for several months, tapering to zero, he was NOT given Alendronic acid and Adcal, consequently suffered osteoparosis and four collapsed vertebrae, he had to have surgery. I am taking 10 mg prednisilone for polymyalga, I take Alendronic acid and Adcal.

on the plus side, Prednisilone did reduce his very lumpy lymph glands , they have been relatively trouble-free for a few years, but now other issues are emerging and he has been given the new drug Ibrutinib , early days ....... he has shingles just now....... best wishes to you hw



Replied On: Sep 21, 2014 11:19am
weelowry

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Hi Helen, im on 100mg for a week, reducing to 20mg for 18 days after that. Also been given 300 mg of Allopurinol for the effects of gout.
Since taking the prednisolone im have real problems with sleeping. Maybe had about 4/6 hours in total since thursday.



Replied On: Sep 21, 2014 11:20am
weelowry

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Hi Chonette, where do i register?



Replied On: Sep 24, 2014 09:55am
Chonette

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Sorry Weelowy, did not see the message before, was in London for a HCL conference and then flew to Glasgow.
CLLSA does 4 members meetings a year in different parts of gthe UK, this was the first meeting in Scotland and went very well, members want us to organize another one next year.

We do not charge for attending the meetings but people have to be members, you can register to be a member on line going to our website www.cllsuport.org.uk we send information pack and news letters to members.
Regards
Chonette
PS I am off to Spain today and back on the 9th so I will check my mails while away.



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