My 3 years of living with CLL

I was diagnosed in July 2009 following a routine blood test. It later transpired that it had shown up in a previous blood test 18 months earlier but had not been picked up! My GP said that I had a raised white cell count and I then received an appointment to see a Consultant two weeks later so I knew it must be something serious to get such a quick appointment. Myself and my wife went to the hospital having already pretty much decided it was some form of leukaemia but obviously we didn't know which kind.

He told us it was CLL and said that if you were going to get leukaemia then this was the best one to have! My count was 67k, my spleen was three times bigger than it should be and my liver twice the size. I was told to watch and wait and had to attend the hospital at Lincoln every three months to have the levels monitored. Within 8 months the white cell count had risen to 150k so I commenced a cycle of FCR. I was meant to have six treatments but felt so bad after five that I didn't have the last one. After the very first treatment my wcc went down from 150k to 20k and by the end of the 5th treatment it was down to normal. It's been two years now since the FCR and my count is still normal.

Almost as devastating as being told I have CLL was when my GP told me that I should stop working as this was a major change to my life. However, I feel that not enough information is given regarding benefits etc. as I didn't realise I could have claimed DLA from first diagnosis and missed out for over a year.

I recently went to the CLL event in Cardiff and learnt a lot of very interesting facts regarding CLL and the current research. They said there could be a cure in 5-10 years time which was very encouraging. The main question I had for the experts there was whether it would be more beneficial for me to ask for referral to a CLL specialist when my levels start to increase again. Although I have no complaints with my treatment so far, I only see a haemotologist not a specialist and I didn't want to miss out on any cutting-edge developments in the treatment of this disease. I was advised that I would undoubtedly be better off under the care of a CLL specialist so I am planning to ask for a referral at the first signs that my counts are on the rise again.

I hope this account might be helpful to others with CLL, I realise that everyone's experience is very different but if you need any further details regarding the above please feel free to ask.

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  • Arthur welcome

    Thank you for your story it must have been difficult and puzzling to be given the mixed messages that you had the best leukemia, to have that followed by you should cease work. i am glad you found assistance in the end. I think we can all agree there is no such thing as a good cancer.

    thanks for sharing your treatment story, long may your remission continue.. The optimism shared by the Cardiff researcher's last month was encouraging. I will post shortly a report with links to the talks from that day for those who were unable to attend. and haven't a copy of the newsletter.

    nick

  • Hi

    You were diagnosed within a month of me, i was diagnosed August 2009.

    On watch & wait & seeing a haemo in Louth.

    I've pm'd you.

    Dave

  • Hi Arthur, thanks for sharing your story and I'm delighted that you are now in remission. Long may it continue! I was diagnosed end of May this year and am presently on W & W which I hope will continue for a very long time.

    It must have been so a blow to have to give up work and the financial pressures surrounding cancer are not always discussed. I agree with your view that benefit advice is not always readily available at that point. It's good that you now have DLA but there is a 3 month qualifying period for eligibility (unless under Special Rules which is unfortunately a terminal diagnosis) so eligibility from date of diagnosis is not actually guaranteed. It's an interesting area of welfare rights as many of us CLL's would not meet the eligibility criteria for DLA right through the early course of our illness I suspect. Professionally, I had a lot of dealings in this area and it is tightening up so much that I became exasperated at the people who were refused this essential benefit. I know Macmillan have advisors who assist with these areas.

    I too have a Haemotologist and not a CLL specialist and share your view that I would be wanting a referral/second opinion at some point though I do have confidence in my consultant.

    Wishing you well Arthur and hope you've found interests to replace your work.

    In support, (apologies if this prints twice, the site froze up on me so I've re-posted)

    Newdawn

  • That's interesting. I have a nice haemotologist but wouldn't like to think I might be missing something. I live in Scotland and I believe that there is only one CLL specialist in the whole country and he is based in Glasgow, which is quite a long way from where I live.

  • Hi Gartshore

    Hope all is well with you since your blog above which I see is a year ago. I also live in Scotland and would be interested to know the name of the one CLL specialist in Scotland and the hospital where he/she practices. I currently attend the haematology department at the New Victoria Hospital in Glasgow. Treatment is imminent for me, so getting the correct advice at this point is crucial.

  • I am attending Stobhill.

    I asked if the Haematology Dept had a CLL Consultant, and was told that the Consultant was based at the Beatson Hospital.

    I was also told that when it comes to needing treatment, that the CLL Consultant at the Beatson would be contacted in relation to any treatment that was to be used. The name of the CLL Consultant escapes me.

  • Hi ygtgo

    Thanks for the info. I'm really keen to get the right treatment at the right time. getting a second opinion would be good.

    How are you finding the Stobhill Haematology Dept?

  • I have nothing but praise for the Haematology Dept since I was diagnosed in 2006, albeit that I have not as yet needed treatment.

    ... Wait, that's not quite true ..... There was one occasion when I saw a different Haematologist .... he had the bedside manner of Dr Hawley Harvey Crippen ...

    Thankfully that was a one off ....

    I said that when it came time for treatment that I would like to talk to the CLL Consultant at the Beatson, just to double check that I was on the correct/best treatment for me .... My Haematologist said that she does check with the Beatson as a matter of course, and that there would be no problem with me asking for a second opinion as well.

    As you are thinking that treatment is imminent, I would ask your Haematologist, if they check with the Beatson ... or maybe you will be treated at the Beatson, I would certainly ask.

    If treatment is needed, I hope everything goes well and I hope that you can keep in touch and let us all know how you get on ...

    Steve

  • Hi, chipping in with my 2 cents :) I attend Forth Valley Royal, but have been seen by the CLL specialist once at Beatson. I was diagnosed very young (27) and he wanted to add me to a case study and I wanted a 2nd opinion. I can't remember his name, your doc would generally only run things by him if they were in the same health board ie- Glasgow & Clyde for Beatson. My own haemo doc was a little put out that I was seen by another doc if I'm honest. Made me feel awkward for going after a 2nd opinion :/ Wishing you both good health :) xx

  • ... not as awkward as the haematologist would feel if he wasn't giving you up to date advice.

    Second opinions are there to prove him right ... so obviously he can't be worried ..... can he ? ... ??

  • Hope your claim goes through with DLA if you have to have a medical with Atos do your home work as they will ask all sorts of trick questions designed to say you are fit for work. Many have died only weeks after being given the all clear by Atos. Insurance company medics are the same just leaving enough to wriggle out of a corner if challenged. My company said one of the employees was fit to work - died 2 weeks later from the illness his GP diagnosed but insurance medic rejected - probably a harley street boffin as they out rank GPs in their mind after a short examination. Again questions are crafted to favour the insurance company who are happy to take your money but not when they have to pay out

    If you have a medical ask for the appointment to be recorded - essential to challenge decision - ensures they don't stretch the truth. Alternatively keep extensive notes You can ask for a home visit too. Remember questions are designed to sign you as fit and any slightly positive comment will loose you points. Forget trying to raise your spirit and give it as it is on your worst day, no buts etc. They have a magnet for these comments and a poor memory for the issues you have.

    see dwpexamination.wordpress.co... matches my experience

    here is the score sheet they use

    dwpexamination.wordpress.co...

    If you don't get the outcome you feel is correct for you challenge the decision

    Good luck all - a pressure none of us need when ill - that is what they rely on. Atos should be fined for all the overturned decisions so they get it right first time rather than trying to increase their bonus and put sick people through more hoops than necessary.

  • Hi Myrddin, I gained the impression Arthur's DLA application had been successful. Maybe I'm wrong but I think he was saying due to inadequate welfare benefit advice, he missed out for the first year.

    But yes the observations you make about the process are sound and do add to the pressure people could do without when they're ill.

    Regards,

    Newdawn

  • Here are a few useful links to the welfare benefit advice services offered by Macmillan and other organisations.

    macmillan.org.uk/Cancerinfo...

    Watch our financial support video macmillan.org.uk/Cancerinfo...

    Getting financial help

    Macmillan's cancer support specialists macmillan.org.uk/HowWeCanHe... can offer advice to people with cancer, their family, and carers who need help to access benefits and other forms of financial support. They can look at your individual situation and find the best solutions for you. They can also help you fill in claim forms, which isn’t always an easy task to do on your own.

    Some other cancer support organisations, hospitals and self-help groups also have benefits advisers. They can advise you on whether you may be eligible for any benefits or grants.

    A social worker at the hospital may also be able to give you advice on sources of financial help. Your local Social Security office dwp.gov.uk/contact-us/ can give you information about benefits which you may be entitled to. Your local Citizens' Advice Bureau citizensadvice.org.uk/ can also give you financial and legal advice; its number will be in your local phone book.

    It may be helpful to contact an independent financial adviser (IFA). IFAs can assess your individual situation and recommend the best course of action. You can find a local IFA by referral from family or friends, looking in your phone book, or by contacting the Personal Finance Society thepfs.org/ or Unbiased unbiased.co.uk/

    Getting help from a welfare rights adviser

    The people mentioned in the case studies in this section got financial help after speaking to an experienced welfare rights adviser.

    Welfare rights advisers can look at your individual situation and find the best solutions for you. They can also help you fill in claim forms, which isn’t always an easy task to do on your own.

    To speak to an experienced welfare rights adviser for free, you can call the Macmillan Support Line macmillan.org.uk/HowWeCanHe...

    If you would prefer to talk to someone face-to-face, come to one of our local benefits services macmillan.org.uk/HowWeCanHe... , which we run in partnership with local organisations across the UK.

    .

    CLL on-line community at Macmillan community.macmillan.org.uk/...

  • Thanks for your comments everyone. Yes I do get DLA now, it was processed in two weeks under the Special Rules. I was amazed at this as it isn't clear on the DLA form that this happens for a diagnosis of a terminal illness, it gave the impression you had to have been given only six months to live. This was why we hadn't claimed at first diagnosis, in the end we only claimed on the off chance, not expecting anything, so we were surprised when I was awarded it and think this is not made clear to people with a terminal illness. I didn't have to have a medical or anything they just wrote to my GP.

    It's my understanding that once you start receiving treatment for CLL then you can claim even if you're still working. As I will be 65 in January I also won't have to have any review when they switch to the new benefit that replaces DLA next year.

  • You quoted your WBC as 67K. My readout shows "Total white blood count (10^9/l)" at 13.9

    Anybody know how these figured relate.

  • The counts are in thousands but usually quoted in tens, so mine would have been 67. Similarly, yours could be said to be nearly 14k. Normal count is between 4k and 11k. Hope this makes it clearer?

  • Yes it does thanks.

  • Hi Arthur123,

    I was diagnosed with CLL 4 years ago and Macmillan told me I was not entitled to any benefits!

    Did you get your DLA (under special rules) purely for having a CLL diagnosis or did you meet other requirements as per the form? Did you need to approach your doctor/GP for a DS1500 report?

    I have completed the online form this afternoon after reading your blog, if you don't ask you don't get!

    Keep well!

  • Hi,

    We didn't expect to get anywhere with the DLA claim but thought it was worth a try. It was purely for the CLL and I assume they approached my GP as I didn't. I'm wondering if the fact that I had reached treatment stage had anything to do with their decision? I had to list which drugs I was on which were chemotherapy (FCR) but was amazed when they did it under special rules as the wording on the claim form gave the impression that you had to have a 6 month life expectancy. However, after doing a bit of digging online it would appear that if you have a terminal illness that could cause your death within 6 months if it got worse then it qualifies. In the case of CLL, most people would be open to catching serious infections that could result in death, I don't know whether that is taken into account.

    Try googling 'DLA Special Rules terminal illness' and you should find various forum discussions and other useful info.

    Good luck with your claim, let me know what happens.

  • Hi Arthur,

    Thank you for the info. I have not reached treatment stage so maybe it will be turned down. I have a friend who has Motor Neurone Disease and should have been entitled but was turned down, so who knows! I'll let you know how I get on.

    Rileyesq

  • Hi, I was first sent to my local Hospital Whipps Cross who were very good but I asked to be referred to a specialist at Barts Hospital were I now see a "top guy". It was OK for me as I live in London and the travel between hospitals is easy. If you live a long way from a specialist it will be difficult to get there when you are not well. Its swing and roundabouts. Good Luck

  • This can be a drawback, at the moment I have a 45 mile round trip to see the Haemotologist at my local hospital. The nearest specialist in CLL is at Nottingham, about 95 mile round trip but I think it would be worth it.

  • Hi I know what you mean. It might work for special appointments ( Do I need treatment? What treatment?) but have your care and perhaps treatment recommended by the specialist locally. I have kept going to my local hospital as well as I know that I need that local care. Best wishes

  • This is my first venture into this sort of arena, so I should make it clear I am here as a medical expert, with a specific interest in CLL, and CLLSA trustee.

    Specialist vs general haematologist: there is no universal answer, as is clear from the above exchanges. In terms of missing out on new therapies or studies, two things - 1) ask your haematologist; there are extensive Network links now across the country and if asked, many haematologists will be able to access information on what's available in their Network, even if it is not available at their own centre; 2) keep yourselves informed; again, the dissemination of information is ever easier, but the challenge is to know what it all means.

    I guess one role of the CLLSA is to guide patients to the best sources of information.

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