New diagnosed

Hi I'm Charles 59 years from Malta. I was diagnosed with CLL in October during a yearly routine check up. I went numb and could believe myself. was put on wait and watch and my second appointment is in January. Since than I panicked and wanted a second opinion and went to England to see another haematologist. More tests were done and was given same answer as in Malta but was given a better explanation . So now I like to know more regards CLL. especially like diets...swollen glands..ect

Regards

Charles

12 Replies

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  • Hi i was newly diagnosed in October also im 54. I Havent been told much and go back in February where having read posts from this site I will be armed with lots of questions. Have a look through as there is lots to find out which will help you. O wish you all the best.

  • Hi Brunellu and Newcastle1962

    Sorry to hear of your diagnosis of CLL, especially as both of you have had a bad experience with the way this news has been presented to you; which unfortunately seems to be becoming a more common experience. Anyway, welcome to our forum where I am sure you will receive lots of support and comfort from the folk here. To help you learn more about CLL I would like to point you in the direction of two documents created by members of this forum that I’m sure will prove useful to you both. They contain lots of excellent advice about living and coping with CLL. You can copy them to your own PC and dip in whenever you wish, or you can search for subjects you are interested in. These guides can be found by clicking on the links below:

    Coping Strategies - Part 1

    healthunlocked.com/cllsuppo...

    Coping Strategies - Part 2

    healthunlocked.com/cllsuppo...

    Best wishes and good luck to both of you and wishing you a happy and healthy new year.

    Kevin – Essex, UK

  • Hi Charles, I'm so sorry you're having to go through this. Please know that you've come to a very good place with wonderfully supportive people. This site has been a godsend to me.

    Just want to add to Kevin's excellent advice and share a few links. cllsociety.org/ has so much good info, you won't run out of reading material for quite a while.

    Here's a link to a post from AussieNeil about understanding your blood tests: healthunlocked.com/cllsuppo...

    There a good number of online lectures available. I particularly like this one from Dr. John Pagel.

    This video covered everything it took me two years to learn on my own.

    Hang in there, keep coming back, and know that we're all here with you!

  • neurodervish,

    Thanks for posting this video,

    Dr Page provides the viewer a comprehensive, yet understandable overview of CLL and treatment options - the title lends itself to an optimistic outlook for us CLL affected.

    In stating this, I found Dr. West's query most profound (near end of video); in that, choosing an intervention is still framed in terms of risks and benefits (? short term gains/ long term effects). I've noted that as one ages- other variables may coincide with CLL (cardio-vascular, gastro- intestinal, and renal challenges); hence, ones overall health becomes a dance with prioritizing symptoms.

    A few thoughts from the W &W edge.

  • Welcome and sorry for the reason but I started out here one year ago and it has made all the difference. Ask lots of questions of your doctor and support sites such as this. No question is stupid. Best wishes to you.

  • Patientpower.com is also a wonderful resource for any question you may have with video shorts made with CLL specialists and patients from around the world.

  • Hello Brunellunand Newcastle62 - I am a fellow new member also joined October. Stage 1 w&w. I have found this forum and everyone's support invaluable and the links quoted are all very helpful. My consultant explained everything very well but coming back in to the real world is where the hard work really started for me. Things are getting slightly easier though. I hope you get the answers to your questions - I have quite long list for my next apt in February!

    PS: I am originally from Newcastke but now living near Manchester 🙂

  • Hi thanks for your reply. Im originally from near Blaydon but moved to near Coventry many years ago. Still a geordie at heart though.

  • A good source of reliable information is the Start Here page of the main site cllsupport.org.uk. There are several videos with those at different stages of cll and several consultants talking about cll. More videos from recent CLLSA conferences will be released in the new year from Southampton, Glasgow and London meetings.

    The coping strategies Kevin mentioned are also available from the site. If you are interested to understand your blood tests there is a section on bloods and a spreadsheet you can download to record your blood results. I have recorded my results for many years and take them to all GP appointments - saved me having many extra blood tests along the way. Once recorded they can be forgotten till the next test.

    Can be overwhelming when first diagnosed but it does get better. Learn what you need to talk to your doctors and then get on with life as symptoms allow.

    Take care

  • Hi Charles, You asked specifically about diet (a regular healthy diet is recommended) and about swollen glands. As Diamonnd mentioned, patientpower.info/ has a lot of great info. I found this video with Dr. Nicole Lamanna especially helpful

  • Hello Charles and welcome to the best place you could have found. We are all in the same boat in varying degrees. DON'T panic! Any questions you have on here regarding CLL someone will have an answer for you. I was diagnosed in 2012, however, I have a medical background, so when I saw my numbers I knew immediately what I had. The one thing I didn't know was there are many kinds of leukemia. If you have to get this, CLL is the best kind to have. There is so much that can be done for this disease. I too went for a second, then third opinion in the beginning. I'm in the US and believe I've found a wonderful doctor in California. Eat your fruits and vegetables. Get proper protein from chicken and fish. Maintain a proper weight, get plenty of sleep, and finally get moving. Exercise is your best friend. Again, you have friends here. My best to you. Get going and live your life to the fullest. Carole

  • Thanks...

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