Hi folks - just diagnosed

Hi All

I'm 47 and just received my diagnosis today.(CLL )

My bone marrow is fine I am told and so they are putting me In watch and wait.

While all this is going on we are also In in the process of selling our house in order to move from London to devon( UK )

What fun! Heheh

I just read something about folks with a big higher red blood cell count having longer survival periods. Have any of you good folks tried to influence your red cell count through diet ? Do you think this would help?

Best wishes to all

16 Replies

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  • Hi Jamie,

    Offhand, I don't recall hearing of that particular correlation with survival time, but there are so many to chose from! The problem is we generally don't know the underlying reason for correlations and boosting a particular prognostic factor may or may not make any difference to your life expectancy with CLL.

    I can see that there are two possible explanations of why a higher RBC count is a good prognostic factor when you have CLL.

    1) RBCs are made in the bone marrow and as CLL progresses, it eventually infiltrates the bone marrow, reducing our ability to make blood cells.

    2) Likewise CLL cells can build up in the spleen, enlarging that organ. The spleen filters out older blood cells and as it enlarges it filters out more and more, including cells that are still functioning adequately.

    Both an infiltrated bone marrow and an enlarged spleen are signs of later stage CLL, so that would explain the correlation you reported. Do you have a reference?

    Given the above, boosting your RBC via diet isn't going to change your CLL stage - it won't shrink your spleen or reduce your bone marrow infiltration, BUT if your RBC has fallen sufficiently so that you are anaemic, eating food that is rich in vitamin B12 and folate (e.g. legumes and green leafy vegetables like spinach), that are needed to make new blood cells may improve your anaemia and hence your quality of life.

    Good question!

    Neil

  • Thanks Neil

    That makes sense. I'll keep searching for the link.

    : )

    All the best

    Jamie

  • Welcome Jamie

    Sorry to read your diagnosis was today but glad you have found us here . Your head must be spinning? especially with a house move on the go as well.

    CLL does take a little time to get your head around, this is the starter section from our website: cllsupport.org.uk/cll-sll/s... a good place to begin to get to grips with CLL and watch and wait..

    You mention your bone marrow is fine and have asked an interesting question about red blood cell counts and survival periods. Haven't heard this question put this way before. Are yours low ?

    Nick

  • Sorry to hear you have joined this club- but if it's any comfort, I got my diagnosis the day after we had committed irrevocably to buying a house in France and retiring there. After the first few hideous days , things calm down a bit, you realise actually nothing has changed except you now know you have a slow progressive condition which will be carefully monitored and managed- which is a lot better than finding out only when you are a long way down the track.

    Best of luck in your new house and with many healthy years of W and W!

    Parslow

  • On the plus side Parslow, make sure you get your French doctor to authorise an ALD 30 listing. Then all of your treatment costs will be borne by CPAM, without you having to pay out 30% up front and reclaim from your mutuelle.

    CLL is called LLC in French. Also get a detailed letter from your current doctors and hospital to take with you, including their own contact details so that you can get as smooth a handover as possible. Also take a printed copy of your blood test results.

  • Hi Nick

    Thanks for the link. I need to do a lot more reading.

    I'm not sure if my red count is low. The doc did say that my white count was a little high.

    Being a newbie i didn't think to ask for details but i will certainly start doing so!

    I found a document (which i forgot to book mark and can't find now) where a CLL specialist ( i think he was involved in creating the staging) was being interviewed and he was answering a question about spotting patients who were likely to have longer term survival rates.

    He said that those who survived the longest ( think he specifically was talking about 10 years plus) always had consistently higher red counts.

    (Apologies if anyone finds this upsetting)

    Not sure if any of you have heard this before and if anyone else can find that document please let me / us all know!

    many thanks

    Jamie

  • Nice to know since mine are higher...I was diagnosed in 1999 and am doing fine on w & w,thanks for the info...Cat

  • If the person was involved in staging, it was possibly Dr. Rai.

  • Here is paper I think you are refering to...

    it states

    Soon, patterns began to emerge. Dr. Rai found that patients with the lowest red corpuscle and platelet counts had the poorest survival rates (high risk); those with normal platelet and red blood counts had the best chances of long survival (low risk); and those with little bone marrow involvement but who had swollen lymph nodes, spleen, or liver fell in the middle (intermediate risk).

    ascopost.com/issues/may-15-...

    Broadly speaking he is talking about patients who do not develo anemia and thrombocytopenia etc... in general terms ...less bone marrow involvement or cytopenias and autoimmune complications.

    ~chris

  • Thanks Drayton!

  • Hi Jamie_ James

    Well done for finding this site so quickly, none of us wanted to be here but we are all glad that we found it. I think you'll find all the up to date information and links that you need here, if you can absorb it all without blowing your mind. I suggest taking your time.

    How are you feeling physically, if generally ok do take your time with all that is going on in your life.

    A word of caution, if you are surfing the web a lot of information out there is now obsolete, and a bit scary.

    Any questions, ask away and with the range of expertise on this international site, I'm sure someone will do their utmost to help.

    You may already have done this but do ask for a copy of your blood results at each consultation, helpful for you to understand your CLL, and over time you will be able to follow the trend. The main thing you are looking for and following at this stage is your Absolute Lymphocyte Count reported as ALC on the results.

    Breathe, take your time and hope the move goes well.

    Best wishes

    Bubnjay

  • Hi Bubnjay

    Physically i'm very good.

    Yep i will definitely start asking for a printout of my blood tests.

    Mentally, i'm ok. Was feeling positive yesterday but today feel a bit overwhelmed.

    i've been trying to follow a Zen practice for about 8 years and that is helping enormously.

    it is something of a roller coaster though.

    All the best

    jamie

  • Good diet and moderate exercise helps everything. Just get on with your life and enjoy ! I've had it since 1999 and feel just fine,still on watch and wait ...no worries !

  • That's great to hear!

  • Hi Jamie,

    I was diagnosed about a month ago and I'm 40! I find it a struggle to accept and come to terms and often question have they got it wrong as I feel generally well...I guess this is wishful thinking on my part and denial.

    I have an appt to discuss further in Aug since being advised that i'm at early stages, no real symptoms other than 1 lymphnode on my neck that is less than 1 cm and hardly noticeable, therefore I'm on W&W. My appt will be to discuss in more detail as I have had a genetics test recently, so a bit frightened of the worst.

    I'm devastated and we are looking to move house in the next 12 / 15 mths as well but everything now seems insignificant, but I believe there is a case to 'carry on' in your normal life. It's the fear and the Unknown that kills you...being aware you have a problem but nothing is being done which can be seen as a positive as much as a negative!

    All I can say is, I found and joined this group who have been a 'rock' to me and my family, I don't read everyone's posts as every one is at different stages and experiences, but the knowledge / advise is first class! Now doubt following my appt in Aug 2015 I will be sharing the results with the group for advice.

    I suggest, looking for members close to you and exchanging numbers to speak, although everyone is different there are members who have had had CLL for 16 + yrs and a couple of treatments are fine, also it is said in approx 10 yrs time they believe a cure will be sought, which is all very positive!!!

    Regards

  • That is positive news indeed. Mostly i am ok but every now and then get a wobble. last night wasn't so good but today i am feeling mush better.

    Thanks for the advice about finding a local sufferer and good luck for your appt. I'm rooting for you.

    : )

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