CLL NEWBIE

Secondary cancer and new primary cancers

2024-10-23T23:43:54Z

I am aware that, as a CLL patient, I have to be aware of increased risk of skin cancer, and I believe breast cancer, but in a recent, non related, appointment with a medical associate, I was given information which I found distressing:-

This young woman, who apparently did 2 years post graduate training to become a medical associate (ie not a doctor) told me that my CLL is like a tumour in any other cancer, that bits can lodge in any other organ and cause secondary cancers. Lung cancer was a specific problem according to her.

Since this is contrary to what I have been told by my haematologist, I asked the nurses at my day unit if they could confirm that she was wrong. They got my consultant to phone me, and he was furious, saying that she was pathologically wrong. Like many others, I was told that I would die with CLL, not of it.

Do I complain, find relevant documentation and send it to her, or let it go.

I am currently in cycle 12 of O & V - only 2 of my 48 weeks left and all my results are good, so I'm hoping for a good remission - I just need to get her comments out of my mind

Normal?

2011-08-06T20:26:40Z

Looking at how I think about having CLL these days I seem to be thinking differently? I appear no longer concerned about the procedure of giving a little blood for routine testing, I even never seem to give a second thought about what the disease may be doing. Whether my counts may have altered dramatically from the last time. I know it's slowly marching (creeping up), but don't seem to be phased. The day to day symptoms that were new are now just a part of me, having adjusted my routine I seem to have forgotten what things were like before , so now feel normal again. Is this normal, or am I in a form of denial again?

It's not a lot different to how things proceeded following my stroke. It took a while to walk again and compensate for semi permanent vertigo. Even now two years on that's still there, but I don't notice, unless I turn a corner too fast and lose visual compensation for a while, then I over rotate. But it's normal I can't remember what it was like before. I don't notice. I remember when my daily prophylactic drug list was issued, " how the hell am I going to discipline myself to take all these morning and night" For ever? I just do, don't notice them, simple routines like lining the stomach and refilling the prescription, just seem to happen.

I guess we adjust and become the "new normal". The altered expectations of the future, the being unwell, the new routine, the precautions, the medical environment and the necessary new knowledge are all assimilated. Incorporated and connected and become nothing more than part of your normal day.

I seem to notice changes but they don't stand out, it's understood and expected. So as infection has become more frequent and harder to shake, and I realise that has crept up on me too. Am I imagining how normal it feels?, Because I'm sure something, that before would have seemed major, now is just another day and barely noticed, is this normal, or does this happen to us all? I remember when diagnosed, finding out about infection precaution and again thinking " how the hell am I going to discipline myself to take this on board"? Well I did and it must help with some, but not all. Now I am familiar with many more antibiotics than before. I think this is why my interest has been peaked by much of the new research into combating pathogens, the search for a universal flu vaccine and even immunotherapy for CLL.

Only last week I was uplifted by the research at Cardiff University into searching honey for phyto-chemicals to combat drug resistant pathogens. With a major spin off of perhaps finding a plant that may help combat the verroa mite, that is reducing this very resource.

Superbug Breakthrough: Manuka Honey May Help Develop New Superbug Drugs ,.

http://h3n2flusymptoms.com/superbug-breakthrough-manuka-honey-may-help-develop-new-superbug-drugs

This week my head has been raised by much around immunology and pathogens.

The first antibody which can fight all types of the influenza A virus has been discovered, researchers claim. They isolated an antibody - called FI6 - which targeted a protein found on the surface of all influenza A viruses called haemagglutinin. When mice were given FI6, the antibody was "fully protective" against a later lethal doses of H1N1 virus. It should be understood this is not a vaccine and if it was possible to make a vaccine it is years away...

Source BBC: http://www.bbc.co.uk/news/health-14324901 from the study published in Science Express -
http://www.sciencemag.org/content/early/2011/07/27/science.1205669.abstract

There is work happening with T-cells, immunotherapy, and CLL...
http://www.cllglobal.org/bios/cooper.htm
Dr. Gribben at Barts--
http://www.cllglobal.org/research/alliance/updates/hosing_shpall_gribben.htm

Kipps, Castros et al have been working on a number of CLL vaccines like ISF35 etc...
http://www.memgenbio.com/technology/files/Memgen_ASCO_2011_Poster.pdf

Some not so encouraging news; Salmonella strain, known as S. Kentucky, has developed resistance to the antibiotic Ciprofloxacin, often used for treating severe Salmonella cases.

http://www.bbc.co.uk/news/health-14386654

UK- NHS on the subject -http://www.nhs.uk/news/2011/08August/Pages/kentucky-drug-resistant-salmonella-epidemiology.aspx

The NHS on the subject proved a much better read.

It appears that less than half of half a percent of all reported cases in these countries was the drug resistant strain of salmonella. And though there seems to be a trend towards increase the incidence is still extremely small.

The region of origin seems to be north Africa and the Middle east. trafficked by travel, poultry and some fruit and veg. Over use of antibiotics in poultry farming in that region is suspected as the reason for it's development.

As we CLLers already employ preventative hygiene procedures around food and especially raw fruit and vegetables, that the NHS suggest. I would suspect that we are best prepared to avoid such a minuscule chance. However the trend does show a small increase.

It does make you realise the ability for many pathogens to select for drug resistance. Part of what interested me about cardiff's research project into finding phyto-chemicals to combat infection, and that Manuka honey was not likely to select for honey resistant bacteria. There may be some mileage in the project, we have known of honey's antisceptic properties for centiries, perhaps many of the old wives tales hold a lot of truth?

There seems to be much going on in the field of research that may produce results that improve our quality of life (we could do with some that is purely aimed at improving QoL), Understanding how much we are able to absorb often makes me wish for discoveries that may assist in true management of this disease rather than wishing for a cure. You never know!!

None of it's gone away, the discomforts are all still here. As is the hammer over my head with knowledge that treatment will come. Maybe I'm just having a good day or maby we do just adjust

Take care

Nick.

CLL Newbies update

2011-07-29T08:44:23Z

As an active CLLSA member I have put together a few of my blogs showing my thoughts as I have journeyed through the transition of accepting my diagnosis and moving on. I hope this may help other CLL patients. We now have an online group forum; CLL, SLL, HCL

Jan 27th 2011 Making the adjustment

Feb 2011 waking up

July 27th 2011 Watch and Wait, is it the right name?

July 28th 2011

Realising that vitamin D levels could be an outcome indicator, led me into the world of prognostic indicators pretreatment, where I think I struggled for a while in making the transition to accepting the disease. As I began to realise how many markers could give indications of short term prognosis and that in the UK prognostic testing is not carried out outside of trials pretreatment. I commentated on a thread started by Chris Dwyer of http://cllcanada.ca ,on; http://www.cllforum.com/forum1/8599.html ,about the debate on whether prognostic markers are overrated. I have pasted this below:

Chaya Vencat has published her take, interpretation and opinion on Dr John Gribbens commentary on prognostic markers and included Professor Hamblin's in her review. It seems there is much differing opinion. http://updates.clltopics.org/3695-prognostic-indicators-who-when-what-and-why

on prognostic testing pretreatment I believe I fell into her A category, those who wish to learn and if not influence, be an informed party involved in the treatment decisions necessary as my disease develops. Her writing has at times been what enabled me to understand in detail, knowledge about the disease and the meaning behind the evidence. But then I hit the personal barrier I could not implement what I had learnt as I am within a totally different health care system and do not have the flexibility to manoeuvre, that you guys do. Chaya briefly explains how foreigners who's expectations have been lifted by knowledge of new prognostic testing capabilities will suffer when these can't be carried out at home. I pasted below an expert that really does not help me. But I hope makes you all realise what opportunities you still have and can find out enough to make some short term decisions at diagnosis.

"I can think of a bunch of “life” decisions patients may need to make, depending on their long term CLL prognosis. Do you change jobs, possibly risking health care coverage or the quality of the coverage? Do you take on additional debt and move to a more expensive house, based on the assumption that your healthy paycheck is going to be around for a long time to protect your family? Would you slow down, take the time to smell the roses and spend more quality time with your family, if you knew you were in the more aggressive unmutated IgVH risk bucket? Would you make different therapy choices, perhaps line up your ducks for an eventual stem cell transplant – sooner rather than later? Would you continue to indulge in behavior such as smoking and excessive sun exposure, if you knew high risk CLL also means higher risk of secondary cancers? I can think dozens more such questions. But here is the problem: would healthcare providers consider such one-of-a-kind personal issues, if the slam dunk expert opinion is that detailed prognostic testing is only to be done in the context of clinical trials?

CLL is a complicated disease. With the exception of a percentage of patients who luck out and have very indolent disease, majority of patients will find their CLL diagnosis comes with the guarantee that it will dominate big chunks of their lives. You will need room to maneuver, take care of personal and family issues that are not part of any standard healthcare providers’ do and don’t lists. The choice should be yours, the decisions should be made based on what you want and need."

Unfortunately many in the UK seem to be lumped into the same bucket at diagnosis, we are told you may be the lucky one but know also maybe not. So to be safe have to take everything on board prudently, including the worry that comes with the wait. But can get some of the shopping list, just not the genetics. If you are someone who feels they need to know, not knowing enough is an assault on your quality of life. I found out my Kareotype and mutational status due to physical concerns and in my case that is enough. But I remember being trapped in limbo before! if you need to get them you can find providers who will for a fee.

Did getting some answers help me? I don't know as inevitably so much time had passed, perhaps I had come to terms with diagnosis and physical changes had caused me to take stock of my plans anyway. There is the question if you were to find you were 17p deleted did you really need the news at diagnosis? Perhaps it made me realise it is real and I know now I am not in the indolent bucket, but then I think I knew that already. Intermediate is not so bad, but that doesn't change how I have been affected physically and this looks like it's for the long haul on "watch and wait", well, as long as possible. LOL Take care.

Nick

Watch and Wait, is it the right name?

2011-07-27T23:24:22Z

We watch the watch tick and seem to wait, perhaps not a good start!!

Watch and Wait was a new experience for me- it fuelled my anxiety. I could easily understand that a well balanced diet and simple exercise would help me physically. But was intrigued by the state of mind of people in Watch and Wait, and I went to investigate both that state of mind, and stress relief.

Watch and Wait gives us time for the reality of what is happening to be clear to us. It allows us to remember who we are and what is important to us. Part of this is understanding how time plays a part in all this. If we use time then perhaps time won’t use us. Time is not our enemy it can be our Allie. Diagnosis suffocates, bringing with it, fear of imminent danger and change to your family’s future. That is made worse, when the “fight or flight” reaction wants you to react, but instead slowly shuts you down. Doctors remain calm, appear not to hear you, But in truth, you are on "watch and wait" and you do not understand why. In time meeting others, learning about the disease and CLL medicine teaches you what this means.

Now, let us CLL-ers take charge.

As so much of medical speak is formed around abbreviation. Would a change of the term have assisted in my transition? If we have to take ownership of the term and lend it back to the profession every now and then, could we make it our own?

I was doodling with this as a possibility and tried to apply it. For example: Ardent Investigative Monitoring; AIM. A positive verb and noun that could immediately change the initial impression of the process. Did you know that synonyms for watch are; gaze at, look at and stare at for example, hardly inspiring.. For wait, they get worse; stay, remain, hang around, linger, stop, kill time, pass the time. Is it any wonder that Watch and Wait can be so hard to deal with in the beginning until you get past the term?

Add a little Self and you have AIMS. So with a little Self Education, Reading and Time, it could be a SERT that you lose anxiety and stress and are able to enjoy life again?

But them what’s in a name, perhaps it may just be learning not to Watch and Wait, and in time just do a little living?

Nick ( :

waking up

2011-07-27T23:19:18Z

Feb 2011

When I found out that UHW was a world renowned CLL research centre, It was a “would you believe it moment”, that my tiny corner of our small principality, could have dealt me such a card in the “post code lottery” game of our health system. One thing that I realised quite early on in my information search; was that I need to develop a good relationship with an informed cutting edge specialist and I’ve been dealt that card! I was referred to a consultant with a special interest in CLL on my first visit to UHW but it was just after a bone marrow biopsy and dx, so needless to say I didn’t know who fitted in where in all this! Now a year on and a little more informed, I hope that meeting him in May will give me this chance. On the matter of me “ soap boxing” at the unfortunate misunderstanding of many in general medicine, I’ve decided to be a good boy and met with a Doc from the GP surgery today and asked him to pass on the message, that I need to move on. So offered: that as I will inevitably be in contact with them during the course of this disease, I will try to be a boring patient. As we parted, me with tests in hand and he returning his gaze to the desk. I felt better in myself for I realised it had been my ignorance and not his.

Who would wish for CLL? I don’t think anyone would put their hand up. It is a life changing event all the same when it happens and in time we adapt. For me, (a man who never wished to need the help of others), the efforts of others to help me come to terms with CLL and show me where the information is and how to understand it, is astounding.

For what starts as such a minuscule event in time. Develops into such a massive leap for us to take. Because of the cost to us of it’s eventual destiny, many have created and continue to create a wealth of knowledge to help combat it. This saves lives and allows us to live life to the full. Thank you new friends I am continuing my learning and in all probability by the time I think understand, what was understood may then be history.

So I continue with my doodles and am currently musing over facts that evade me My most recent being whether my vitamin D levels might account for excessive bone and joint pain. It was CLLCanada who pointed me to recent mayo clinic studies in this area, and from what I understand; CLL patients who have low levels of D3 seem to experience greater bone pain than those with low levels in the general population, Although both show a similar incidence of low D3 levels, currently about 40% of all of us. In my search for a pain remedy many have pointed me at the importance of checking my D3 levels.

I received my answers from the lab today and they fall in the low end of the normal range which in the UK is between 20 and 30. Mine are 22, now there is also some debate that the bar for the normal range is set to high, as so many of the population show a deficiency. If that is the case my levels are good. As are my calcium and bone. So I will supplement with D3 as do many of you and see if the discomfort reduces. I am however relieved at the results when I read Dr Hamblins blog , below.

Mutations And Mortality.posted by Terry Hamblin January 31, 2011

Alternative therapies for CLL

Paragraph 5

Vitamin D is being used for the bone thinning that occurs after the menopause, because its primary action is to control calcium metabolism. Whether it has a role in cancer and in CLL in particular is controversial. Certainly, CLL patients with low levels of D3 have a poorer prognosis, but it is not clear whether this is cause or effect. Clinical trials of vitamin D3 supplements will give us an answer, but until then, those who have faith in D3 should monitor their serum calcium levels, since hypercalcemia can be lethal.

On this note, I would like to thank Dr Hamblin for responding to several of my questions and wish him well in his own fight with cancer. Nick

TWO YEARS ON FROM CLL DIAGNOSIS

2011-07-13T12:35:59Z

Hi ALL

I Was On "watch and wait" now "watch and live", much has changed since diagnosis, many symptoms and side effects, but many more friends than those, who have helped me learn about the disease and how to live again. I have met many of us far and wide, young and old, pretreatment "watch and wait", first treatment, "watch and wait/remission", in further treatments and sadly have lost a few. All are friends who affect my life in one shape or form and allowed me to grow as a person. Realising now that this dreadful disease has opened as many doors as it has and may close.

I also realise that although rare we have perhaps one of the most common leukaemia's diagnosed within the adult population. Where are we all then? 3,300 of us are diagnosed every year. Add that to existing patients then we become a much larger picture. When we are dismissed as "chronic" because of peoples perception or belief that the name we are given will allow treatment as if we have a truly manageable condition, is so wrong!!!!

http://bloodjournal.hematologylibrary.org/content/103/4/1202.long

"Although this categorization no longer distinguishes these diseases as indolent or aggressive, the low-grade B-cell disorders are still evaluated along these lines.³These disorders are often considered chronic diseases of the elderly, and patients are thought likely to die of unrelated causes. These assumptions are incorrect and, to a certain extent, have hampered progress in this field."

Even though this paper is old, in cll terms, 2004/5 it is for the most part are as valid today as it was then (if not more so). With a few tweaks, the 'new science' has done very little to change the way patients are approached
today

CLL, SLL, HCL are serious cancers that will cause much heart ache, torturous waiting during periods of apparent disease inactivity, while overcoming and living with a compromised immunity accompanied by many side effects/symptoms. To be interrupted by moments of panic as intervention with Chemo a combination or an antibody therapy are required, to then be returned to the torturous wait with a potentially reduced quality of life until the next time,(hopefully a long way off) Is it fortunate to be told in time we may find you have an indolent form, are you really one of the fortunate to be told at diagnosis your version of incurable cancer may not require treatment? How do you know at this stage what may happen? As overtime as your disease follows it's course and through learning and testing you to wait for what can feel like an eternity to find out which cards have been dealt!! Is the gift of a longer survival without the chance of swift intervention a blessing? I THINK NOT

Add this to some of the rest and it's tantamount to abuse, we have to carry on in a limbo world, dismissing the wait and worry element and pretend we can carry on as before. Well we can't we need to make adjustments in a world without understanding, living with the conflicts caused by even the closest to us not understanding what the normal looking person in front of them is experiencing physically and mentally. We are under supported and without a voice, perhaps if we can use our minority volume we can create a space where we can find each other and speak openly about the specifics of our plight.

Part of the reason I have come back to Macmillan's is to find the few of us who are here and hope to make friends in a space others can come to and share their CLL, SLL, HCL experiences, fears, hopes, joys and needs. I know there are a few die hard core members holding the flag and a developing HCL community. But I know many of us just come and go as we also have some very specific care short comings and many cannot relate and even feel guilty when their friends are going through what can be a very visible, hasty phase of treating an aggressive cancer and all that comes with it. Chinese water torture gets there in the end it's constant and over time can drive you mad. Like, when you may wish to treat and cant treat and have to adjust to letting your cancer grow and saturate your system, whilst meddling with the apparatus along the way, then you can treat!

Your friends don't understand why nothing is happening, therefor it can't be serious, oops they get bored, time to move on!!! Thank god for these facilities.

My return rant over, I hope we can meet and share and make new friends helping us grow as we travel with this disease. So thought I'd start a space here at Macmillan's where some of us could come together if we wish.Many are working towards us recieving a fair shake and new therapies are on the horizon. only today Canadian scientists have announced they have isolated a human blood stem cell in its purest form - as a single stem cell capable of regenerating the entire blood system.

http://medicalxpress.com/news/2011-07-pure-human-blood-stem-cell-discovery.html

Abstract: http://www.sciencemag.org/content/333/6039/218

CLL, SLL, HCL

Nick (:

Forgiveness and increasing immunity?

2011-05-09T15:27:59Z

Forgiveness and increasing immunity in cancer?

As many cancers affect the immune system at some stage, the disease itself or treatment. As chronic lymphocytic leukaemia's major day to day effect on us is immunodeficiency a recent overseas post intrigued me.

A recent report at a scientific meeting (excerpts below) observed that CD4+ T cells percentages in HIV-positive patients are elevated by the experience of forgiveness. The neuro-immune connection is now well-documented, and, as a result, it seems plausible that the positive neurological effects of forgiveness could have positive biochemical effects on immune function. A connection with immune function in cancer is discussed.

"Forgiveness Can Improve Immune Function", May 5, 2011
FROM: Society of Behavioral Medicine (SBM) 32nd
Annual Meeting and Scientific Sessions: Abstract
4010. Presented April 30, 2011.
http://www.medscape.com/viewarticle/742198?src=mpnews&spon=12
SNIP.......
A new study conducted in people living with HIV shows individuals who truly forgave someone who had hurt them in the past showed positive changes in their immune status.
SNIP..........
Dr. Owen also defined forgiveness strictly as being a freely made choice to move away from negative cognitive,emotional, and behavioral responses toward a person who caused a hurt and work towards developing positive cognitive emotional and behavioral responses toward that person.
SNIP.......
In bivariate correlations, results showed that greater forgiveness was significantly associated with higher CD4 percentages, whereas linear regression analyses found that this relationship remained significant after controlling for the potential influence of other factors.
SNIP..........
"If psychiatrists want to counsel patients about forgiveness, they first need to understand very deeply what forgiveness is and what it is not," she said. "If there isn't a good therapeutic
relationship between a physician and the patient, Â“what patients can hear from you when you are suggesting forgiveness is, 'I don't want to hear about it anymore and what's wrong with you that you are not just fine with it.' But that can be extremely violating and potentially retraumatize
the person who has already been deeply hurt."It's also very important to respect a patient's anger, she added, because sometimes that is all a person has.
SNIP..........
Reverend Michael Barry, PhD, Cancer Treatment Centers of America, Philadelphia, Pennsylvania, told Medscape Medical News that unforgiveness is a state where a person retains negative emotions, including anger and hatred, for a perpetrator of harm."This creates a state of chronic anxiety, and chronic anxiety has a predictable impact on a wide range of bodily functions, including the reproductive system, the digestive system, and the immune system," he said. For example, stress hormones, including cortisol and adrenalin, have been shown to reduce the production of natural killer cells Â the "foot soldiers" in the fight against cancer, he noted. Dr. Barry's own research has shown that almost two-thirds of cancer patients identified forgiveness as a personal issue for them, and 1 in 3 of them indicated they had severe
forgiveness issues, "so we are aware of the emotional pain that many of our patients are in.

Gardening and CLL on W&W

2011-03-27T14:41:40Z

Hi all

Into my third week of the garden, I am thinking of its effects on me. The first reality is that I am not as capable as last time round, but I am feeling better for the effort. This week I suffered my first backlash from the disease, bone and joint issues reacted badly to some of the exertion and has put me off my feet for several days at a time.

I have taken on board the advice from other CLL patients and wear gloves, wide brimmed hat and factor 30 sunscreen, this will help counter some of the effects of a suppressed immunity and sensitivity to UV. The face mask I will use when involving the compost heap and potential fungal spore habitats.

Capability has to be assessed on the day, some days it is just out of the question, on others negative effects can come on quickly so it is time to stop. The problem I find; is on those days when you do not feel the effects of your disease, it is too easy to forget. If you do you may pay later.

I have introduced a few new habits that help me avoid this: Placing chairs and tables close to areas of work, so sit when carrying out some of the more mundane tasks, like potting and seeding propagators. A flask of coffee encourages me to break every now and then. Converting a lot of the garden into containers has reduced maintenance, improved access and will improve turnover of crops and make harvesting easier.

Early management is also made easier with the use of containers as there is very little need for heavy spade work. Plus they can be easily grouped together as seedlings and young plants. Helping get them through those early weeks when you have to be diligent with watering and observation

There is another plus side in all this; plants like people have their habit preferences. Using containers gives you the opportunity of adjusting the soil constituents and their eventual living location to suit their needs, it is a great feeling when you finally arrange them out into their living space and your design comes to fruition and full bloom. If you find a plant is not happy you just move it. You can rotate colours as they bloom and fade.

Perhaps now the heaviest part of my work is moving full containers around. Investing in a folding sack barrow makes this task easy and takes away the risk of strain aggravation. A lot of this preparation I did last year with the onset of change, I look forward to reaping the rewards this year. I hope any of this may be of use to others.

Coming out of winter, perhaps the one thing I have learnt is: That a little effort can go a long way in us enjoying our lives and our interests.

Nick

Driving CLL

2011-03-20T23:10:55Z

To a friend

Driving CLL

I’m glad to hear that you are behind the wheel again, perhaps life is a little like driving your car. When behind the wheel you are more in control of your destiny, as a passenger you are an observer, you have to rely on the skills of someone else’s driving. (Yeh you can still get side swiped or be distracted by a cat crossing the road) But it is you who must react to the situation at hand.

Maybe living with CLL is like driving a new car? This ones a manual, not an automatic. So now we have to learn how to use the clutch and select a gear that suits our abilities at the time. If we’re driving it is us who can put the brakes on or throttle up, to suit our own speed. So the speed limits are set by the disease at times, but like on the road, if we break the limits, it is us who choose to take the risks.

If we are driving, we can ultimately decide where we want to go, when, what route, and at what speed. You can ignore the signs on the road, but I’m sure if you follow the signs, you will have a better chance of getting to where you are going. But what if you’ve never driven a car before? You have the operation manual to learn, the Highway Code and you have to be taught the correct way to drive, if you want to get a licence.

I think I’ve learnt enough from the new vehicle manual, learnt the new Highway Code and with the help of my friends learnt how to drive this new beast. So am back on the road, behind the wheel. Driving to decisions made with the help of specialists of my choice. Where this new car will take me I don’t know. But when living life do you expect to know what’s in the future?

Probably not, but when I take the map out of the glove box (or use sat nav), test tyre pressure, test oil levels, test windscreen water levels and make sure the correct fuel’s in the tank. I know I have a better chance of completing a long journey. The pleasure of achieving along the way is one of the rewards of living.

Living with CLL, Nick

London CLL Forum conferance

2011-03-07T13:14:29Z

CLLSA new member and novice patient on “watch and wait”, travels to London:

UK CLL Forum Annual Scientific Day Molecular targeting in CLL – from bench to bedside. Tuesday 1^st March 2011

"It’s so nice to come home" Frank Sinatra I think? I did it!!! I’m feeling quite pleased with myself, but I didn't realise how much worse my arthritis had become. I can barely move my legs in their hip joints or walk on my ankles today. But what an amazing trip for me: I got to my hotel without hassle, other than the auto ticket machine not squirting all the tickets out on the outward journey, so had to have a fifteen minute chat with the guard on board, after the train had departed , as to why I did not have a ticket!!! No problem he was a human and at the other end at the barrier a very kind West Indian mystic just waved me through. I'd been playing the story out in my head as I approached her, she just gave me this wide smile and wafted her hand away from the barrier, that was it, I was home again (London).

Then straight into a black cab, where I was given the cabby’s lament on the disappointment of Chelsea being one nil down to Manchester United at half time, we arrived at the hotel just as the talk ended. It was a typical West End Victorian town house and because I was penny pinching, it was on the tired end of the scale. Chipped marble entrance foyer, shabby worn carpet and refrigerator sized lift. After hanging up the next day’s clothes to allow the creases caused by jamming them into the computer space of a computer bag to unfold, I decided to take a stroll down memory lane.

As luck would have it "the cheap deal" hotel launched me straight onto Marble Arch, majestic in its night time floodlights. As I headed for the light, collar up and scarf warming my nodes, I was hit full on by the combination of smells and noise riding on a stiff chilly wind. I hadn't found it yet but I could smell the smoke of hookah pipes being smoked in a near by Arabesque bar, mixed with diesel and food waste from the rear of many eateries. I turned left onto Oxford Street, dodging late night shoppers heading for the Tube station, and the evening set, heading out for the night, starting their own adventures. I'd forgotten how unrelenting the city wind can be, so like the shadowy figures settling down for the night in sheltered doorways, I ducked out left into another world. full of lit windows, with chattering groups grazing on Chinese and Italian delicacies, pubs, curiosity shops and yes, that Arabesque bar, with four figures huddled against the wind sucking on their pipes. A sharp right turn and I was at Marylebone Police station and Berkley square, It was there I was halted by the sudden heavy feeling of fatigue, the original idea of a pint in the pub had already been squashed by the Flagyl in my system courtesy of a jaw infection, now it was the fatigue. But it was enough, tomorrow was another day and the real reason I was here.

UK CLL Forum Annual Scientific Day Molecular targeting in CLL – from bench to bedside. Wednesday 2^nd March 2011

I was glad to have travelled up the evening before, as I awoke fresh and full of optimism. A peaceful time to leisurely prepare myself and then wash down some toast with a cup of tea. Then back out of the hotel entrance into a bright city morning, backtracking my steps of the night before I was back at the square and after a meander through side streets and mews I was on Portland Place, directly opposite the conference venue. Another majestic sight: the RIBBA building with its sculpted façade, my “Mecca” for the day.

I was early, tables and stands were just being completed by interested parties in the anti room and our table was quiet as members were elsewhere buried in early meetings. So I took the time to grab a coffee and nose around: A good sized conference hall, but small enough to be close to the action. Returning to the CLLSA table I met my first CLL people, (of course I’d spent a little time on line with many, or anomalously shared space in haematology waiting rooms). This was a big moment for me, Ann and Chonette were the first to greet me and whilst they organised themselves for the day I watched the anti room fill, with CLL specialists, scientists and associates. But what struck me straight away was how connected every one was, even the great “gurus” had time to exchange a chat with a mere mortal like me. Which surprised me as it was their professional meeting and I was on their turf. So perhaps they are just people like us.

Greetings and “chit chat” over it was time for the business to start, so I settled down towards the rear of the hall, with my sketch pad in hand assuming that everything would just fly over my head. I had spent a little time on line before on sites from our web page "sources of additional information" http://www.cllsupport.org.uk/sources.htm and read the documents mailed to us when joining the CLLSA, so had prepared. The sketch pad very quickly became a note pad, I was captivated. I was able to grasp the introductory phases of each speaker’s topic, even if much of the new science did put me out of my depth. But what did strike me was how much development is in progress: new directions in testing for and identifying markers and methods that may change how CLL is clinically managed and treated. Of course I understand that the percentage of “in vitro” experiments actually reaching the bedside is low, but actually hearing first hand some of these techniques and concepts, was fascinating. I must mention how encouraging it was to watch these practices being debated, following presentation. The CLL forum has shown me that the coming together of many CLL research and clinical specialists can only improve the likely hood of this work benefiting us patients.

Coffee breaks and lunch was a good time to meet with other CLLSA people and share more chat, while they got on with the task of providing CLLSA support information and recourses to the many different specialists and health professionals. Judging by the amount of literature taken away by doctors and staff, I assumed they use this as a stocking facility as well as an update for their own patients.( let’s hope it gets there)

The afternoon session was a little more hard work for me at times, but was helped by the humour and antics of some of the speakers. Lessons for me to learn first hand were that even methods that reach the bedside and trial phases can fail, fizzle out, or come to a halt,

for many reasons. So it’s back to the bench or on to another cycle. Trials were updated and discussed, which seemed to show a sharing of responsibility within the group of professionals in fulfilling quotas to allow trial phases to complete. The session was completed with a presentation on the development of the UK CLL forums website. Which will allow the professionals, much greater access to the information pooled by the forum. This brought an important day in the many to a close.

A CLL friend sent me this message the other day, I think it’s very relevant for me.

“Hang in there! With enough squeaky wheels the medical community will continue to push for new treatments.”

Nick

CLLSA member and novice patient on “watch and wait”

Deer dog

2011-02-11T18:25:22Z

Hi friends,

Sorry I hav'nt been in touch I've been off finding out answers about my disease and meeting others. Another pet lover sent me this video clip, somthing to keep handy when you need a lift. Been hectic, Hope your all coping ok, lets get in touch soon.

Take care Nick

http://www.dogwork.com/ddsff4/

CLL and bone pain

2011-01-30T15:11:35Z

Our health system though it has considerable benefits, has its limitations, especially around patient information. I am a 48 year old who is experiencing an unwillingness by my haemo's to accept the additional discomfort of quickly progressing bone pain, I often feel that they look at me as if I am imagining it! Night sweats and fatigue I accept as normal evils I live with, because early therapy is not a wish of mine. Holding off as long as possible is the policy I wish to follow, knowing that the first chemo tends to be the most effective and that respite is something to look forward to.

The bone pain issue is at the heart of my concern, it appears that many of my age group in the UK are experiencing this, and or combined with quickly progressing early onset of OA. I understand that the highest populations of CLLers are elders and these symptoms and conditions would normally be present. Have you experienced or heard of this within the wider CLL population. We as a whole are a relatively small community and age bands further reduce our numbers so any observations you can offer would be of interest.

Pain discomfort is a difficult topic as we all seem to have different thresholds. I think that when your limits are tested you may consider any thing that will provide even temporary respite. I have remembered that when my mother was troubled with pain during her fight with bowel cancer, that she swore by acupuncture, I know in hindsight that her's was a little more extreme, so I "poo pooed" the therapy as a placebo and was just only too pleased that she felt that it helped!( perhaps I was wrong)?

Exercise seems to have two sides: It seems to aggravate joint and bone pain and increase the effect of fatigue, but is always uplifting even if you suffer afterwards. So manipulative therapy’s something I try to self regulate. But this does bring me to another Question/topic: As an avid gardener whilst tackling work on projects according to my physical ability at the time, I have noticed that the summer sun played a major part in reducing my discomfort last summer,

Now as a new member I am encountering the latest "buzz" around the benefit of maintaining your vitamin D levels. As my bone pain is increasing rapidly and there is a deficiency of sunlight, especially here in WALES in the winter perhaps this is playing a part? I know my WBC count was much more elevated last winter and peaked in the 9 to 10 range. But it settled back into 6 to 8 during the summer. One of the results of gardening is an excess of fresh fruit and veg, plus the suntan! So perhaps this lends a little weight to both diet and vitamin D as major influences in managing my CLL symptoms? The thing is we all have formed opinions on what we are willing to consider and we won't cross those boundaries unless we can see reasonable proven evidence of their benefit. In my case that normally needs to be accompanied with an actual explanation as to why it may work.

New friends have already given me lists to aid me in my research and I will continue to digest things at a pace my mind will allow. Although I feel that the CLL may be "ramping” up a little again I will not be blinded by the "quacks" but am willing to consider most experiences at face value. I am due a 3 monthly visit to the hematologist,

Making the adjustment

2011-01-27T18:26:18Z

Hello all thanks for welcoming me into the community. I didn’t realise that there could me so many of us in one place! With my limited knowledge I’ve found it easy to find my way around, well done techies. I was shocked how quickly I have been able to meet other patients of my age with CLL; we appear to be quite thin on the ground. Just exchanging information about symptoms we share that the haemo’s seem to dismiss within our age group, has taken away some of the fear that doubt creates. Sharing in the broader experiences of the community has already cleared much of the fog that still lingers following my diagnosis. I now know I do have a place where I can share the ups and downs caused by our disease.

It’s taken a while but I think I’ve managed to come to terms with the disease, what was holding me back was partly my own denial, combined with the complex nature of what diagnosis really means. Having to learn a new language just to interoperate what CLL is, has taken the longest. At first you can’t see the wood for the trees. There’s so much conflicting information out there and it’s written in different medical languages, so each time you visit, you come away more confused and afraid. Perhaps learning to cope with “watch and wait” is one of the hardest! Every thing you think you understand about cancer is turned on its head by this approach. To have to let the disease develop within you, whilst it gets stronger and you get weaker, must be one of the greatest adjustments to perceived convention that we make. Thankfully we ought to get respite for a good while after the time treatment comes. But it’s a bit of a double edged sword really; if you want treatment you can’t have it yet, and when you don’t you have little choice. At least we have time to be involved in the decision as to what therapy will best suit us.

Cancer has opened my eyes to the affects on the patient, their loved ones, friends and lives. Nobody wants to be a member of this club, but having had no choice, I am glad to have found this address. I look forward for the opportunity of sharing highs and lows with many new friends within the wider community. Please let me know what has helped you adjust to the new shape of your lives. Take care, an optimistic newbie,

BEAR

a

2011-01-25T17:49:01Z