Advantages of having CLL?

There must be silver linings to the clouds of CLL. What positives have come out of your diagnosis?

One of mine was that through regular blood tests, I found I was becoming pre-diabetic (my GP said it was only a matter of time) and that encouraged me to lose some weight, improve my diet and get my blood sugar levels stable.

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  • It has given us a kick to really evaluate what we (my wife and I) want from life. We've trundled along with work and work and work and vacations and work for a long time with the idea of retiring early and travelling a bit .... Sometime in the future, but I never seemed close. I think the future is closer as a result of CLL diagnosis. It could mean we end up doing soe travel younger and get more out of it. When something comes along that improves the CLL situation I could mean that I end up with even more travel! Travel is being prioritised based on distance etc so as we become less able we do things that are easier/closer to home.

    Whilst none of us would really want to be where we are I have a lot of things I now need to do - and hopefully a long future to do them in.

    Rob

  • My sentiments too. No longer sweat the small stuff - appreciate the important things in life more and will probably retire earlier than planned to make sure have a chapter beyond work, work and more work. Difficult to get the right balance in life but think the diagnosis off CLL has helped me re-evaluate and in some ways am happier as a result!

    jackie

  • I have just returned from 3 weeks in China having lived here for two years previously, I have now been to 68 countries, I am 68 years old and loving it, spreading the word,even with CLL.We managed to lay on Christmas lunch for 30 people less fortunate than oursellves although unfortunately I was too sick to jointhem through the "bug " that got me christmas morning until now.

  • I have just returned from 3 weeks in China where we previously lived for two years. I have traveled to 68 countries in my 68 years and loving it. Unfortunately I was taken with the stomach bug Christmas morning and my dear wife managed to forge a head with the Christmas lunch we helped organise for the less fortunate folk and the girl visiting us from China..God is good and I am loving spreading the word in these difficult times.Bless you all.

    Swiftbrook

  • Is there anybody out there who has volunteered for medical trials?

  • Hi When treatment was necessary I was asked to go on a trial for FRC + M which is hoped to clear up the mesidue left in the blood after chemo. It means that I get regular check ups and tends to mean that you get looked after better, although I don't know this for sure. Its a matter of looking at what is right for you with your Dr.

  • I volunteered for the Arctic Trial. It has since been discontinued due to a high level of toxicity. In retrospect I would have been better off sticking to the normal course of treatment. However, if no-one ever volunteers then improved treatments will not be found. It could have been better than the norm. It's a risk you take. I liked the idea of being on a trial. I thought that I might get slightly preferential treatment because I was on a trial, though I'm sure my consultant would say otherwise. I had 6 cycles of treatment over 6 months. After the fifth I found the cumulative effect of the treatment was making me very weak and I felt like I was being poinsoned. I very nearly didn't go for my sixth treatment but in the end decided I should for the sake of finishing the trial. It was just 2 weeks after my last treatment that they decided to discontinue the trial. In retrospect I wish I had followed my gut instinct and stopped after the fifth treatment. Three and a half months on from the treatment I am just beginning to pull myself up out of quite a severe decline. I've a long way to go yet. If you decide to volunteer for a trial, then take time to find out as much information as possible about it before you find yourself launched into something that you don't fully understand!

    Wishing you all the best in whatever direction you take.

  • Thank you, that is very constructive information although I am terribly sorry to hear you have had such a bad time.Is there anything you have discovered that helps reduce the effects of CLL? Do you mind if I ask what part of the country you live in?

  • I live in the Scottish Borders, but hope to sell up in 2013 and move to Surrey/Sussex to be nearer children and grandchildren. I can't say that I have found anything that definitely reduces the effects of CLL. I make sure I eat healthilyand get sufficient sleep. I have taken early retirement from teaching as I realized my energy reserves were no longer sufficient to enable me to do my job well. I hope to get plenty of exercise, but have a bad back at present so must be patient and allow slipped discs to heal. I am discovering a whole new way of life that involves things I can do without charging around. I can be productive, meet with people, launch campaigns.........in many ways the world is my oyster with my laptop on my knee, sitting in my most comfortable chair. All sorts of new ventures are opening up for me. Where do you live and have you found anything that helps with your symptoms?

  • I live in a beautiful place by the sea in North Wales,retired officially thre years ago and spent 2 in China and have been back twice for visits, on my last one a month ago I experienced severe pain emminating from my back after carrying my baggage to destination.Xray at the local hospital revealed compression and distortion of the spine 5 months after being diagnosed CLL, is this a one of or a bi product?

  • I feel it is a bi -product although my consultant refuses to believe there is a link. In my case, I have had a slipped disc and ruptured disc twice in the past (years ago), but know this is my weak point and so have to be careful of my back. After my 4th treatment my back started to play up a bit but then recovered as I came to the end of that cycle. It then reoffended after treatment 5 and I felt it was the chemo drugs that were precipitating the problem. Again it improved towards the end of the cycle. Then came my final sixth cycle. I felt very weak but delighted to have got through the final cycle. At the end of that week of chemo I went for a walk with a friend. The sun was shining and although my intention was for a short ten minute walk ( as I knew I shouldn't be overdoing it) we ended up chatting so much that I forgot time and walked for 40mins. The result was agony through the night and two slipped discs.

    My totally unmedical theory is that because my bloods were so low they were not able to do their job properly and support and feed the muscles and ligaments that hold everything in the right place. It feels like everything seizes up and I need a good oiling, like a bike.

    Make the most of travel opportunities before you get to the treatment stage. I love travelling but think it will be some time before I'm able to head off again. I have cousins who grew up in Dyfed in a house just above a beach. It's a beautiful area!

  • Thank you, that is most informative,I am not sure where Dyfed is but I am right up in the North of Wales near Holyhead, looking at the sea right now. If you are ever up this way it would be good to meet. God Bless you in this coming Year.

  • I was self employed and decided to retire myself aged 60. 11 years on - best thing I ever did.

  • Hi littleriver, I volunteered for a trial this year, a maintenance drug called Lenalidomide, but, unfortunately, had to come off due to side effects, pity really as it was doing it's job of keeping white cells down, I would have been able to have had this, rather expensive, drug for as long as necessary had it worked for me - now waiting for a suitable new trial when cells start to rise again. HAPPY NEW YEAR ALL xxx

  • How can I volunteer for a trial?

  • Anyone interested in forming a group in north Wales?

  • Hi AussieNeil

    I think there are a lot of positives to having CLL.

    Regular health checks and blood tests and I can jump the blood test queue when seeing the consultant.

    Flu jabs from age of diagnosis and immediate GP appointments when I get an infection.

    Before diagnosis I went through life on autopilot and the occasional roller coaster. Diagnosis prompted me to re-assess my personal life, my work life balance, my attitude to finances and to find out what my priorities and needs and wants were and how to balance my life better.

    I do not deal with personal stress well, but now I know what I find personally stressfull and manage it better.

    I also 'try' to exercise more and to eat more healthily, although I also treat myself to a little bit of what I fancy, when I fancy it.

    Another bonus is I know myself better and how I interact and tick and realise I have choices and if I choose to overdo it today I will probably feel the consequences in 24-48hrs and it is OK to do nothing if I want and need to.

    There is of course another big plus which is being part of this forum.

    Thanks everyone and a very happy new year to all.

    2003

  • Hi littleriver you can research 'where and what' trials are being held on line. I was actually nominated for mine by my consultant, she is a leading CLL 'researcher' and our new cancer hospital, in Oxford, is a main base for lots of cancer research/trials. Ann xxx

  • Thank you for that, most interesting and helpful.

  • I am part of the ADMIRE Trial, was asked if I want to join and said "yes"

    Ray

  • My husband has had CLL since 2003 and following Rchop in 2005 had five years of remission. He was offered a trial with Lenalidomide which he started 2010 but had to stop after two weeks because of the side effects. He suffered a number of infections last year that resulted in being hospitalised but when he was offered another trial he jumped at the chance. Fortunately he is an optimist by nature. He started in December 2012 and has not looked back. His white count is normal, his lymph glands in the stomach had reduced by 75% and his spleen has reduced in size. It uses Rituximab and GS1101 or placebo. Obviously we do not know if he is having the placebo or the drug GS 1101 and we will not know for some time. His health has continued to improve throughout the course of the treatment.

    I hope the above illustrates that there is hope out there for CLL and my husband considers himself to be very fortunate to be involved in this trial. If you had spoken to me this time last year I was very pessimistic about our future but now we are looking forward to being able to travel again. My husband is 72 years of age.

  • I know this is an old post but I have just joined and felt I really wanted to reply!! If my husband had not been diagnosed with CLL in August 2011 he would never have been referred to a haematologist who sent him for a CT scan. The results of the scan showed he had early lung cancer and he had a lower right lobectomy in April last year.

    Without the CT scan it would probably have been too late to operate by the time the lung cancer was identified.

    At present he is on W&W with his CLL..I must admit we don't adhere to any diets as I really don't want him to lose weight. ( I do make him a "tiger milk" smoothy with brewers year and wheatgerm and lots of fruit which he tolerates!)

    I think it is only now, that he has recovered from surgery, that we can start to get our heads around CLL and it's implications!! Good luck everyone..I hope to learn a lot more from this site..xx

  • Nice post Alice...thanks... sometimes dark clouds do have silver linings, your husband is living proof...but don't let him slack off those CLL appointments with the haematologist, they are vital! We all hate them... :-)

  • I can add forming new friendships with people who really 'get it' about what it is to live with an impaired immune system!

  • I certainly agree with that, Neil...

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