3 years on still can not make sense of cll

Hi 3 years on after diagnosis white cell 16.3 to 51 lymphocyte 11.88 to 44.88 hemoglobin 123 platelets 264 I understand that these are good results. But after 3 years of watch and wait I still feel like I am siting on a time bomb with no clock not knowing when it is going to detonate . I go to hospital at Leicester royal every 6 months all I get very fatigued but still can not get the fact I have blood cancer out of my head do any of you fellow sufferers feel the same. I read all of your post and don't know how you all cope so well. Sorry for the moan but just need to put it down I find it hard to talk to my family and my husband of 40 years so I don't worry them. I know I am lucky with me not needing treatment and feel guilty for that is this wrong.

33 Replies

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  • Hi buzzybab,your bloods are very similar to mine,my WBC was 15.2,my ALC 10.5 platelets 205,neutrophils 8.7 and HB 131, in February but I know exactly how you feel its a curse but we are fortunate in as much as they are good but having Blood Cancer is not good,I get people telling me I am lucky to have the good cancer.This site has been my savour and it do get easier,I am not brave at all I am concerned every time I get a symptom I put it down to CLL,I have six monthly checks too,have a moan anytime you feel like it,we are all in this together and don't feel guilty at all,take care and best wishes for the future,please keep us in the loop Maggie x

  • Hi, I feel the same way. I am afraid every month when I go for my blood test that the Dr. will tell me I have to start treatment. I have been in Wait and Watch for 3 years and I am watching my numbers getting closer to treatment. I am praying for a miracle everyday. I wish someone in our group would be cured by something natural to take.

    Have a Blessed Day!!

    Helen

  • Hi Helen, I am in the same position monthly visits now and just waiting for the treatment to start. It is hard predicting the start of treatment. I know it is coming but the months pass with them holding off.

    My advice is stay as active as you can and be positive.

    Best of luck

    Dave.

  • Thank you

  • Hi all, I was diagnosed out of the blue with CLL on Tuesday. I am 40 years old and totally shell shocked. I have read a lot and just discovered this forum. I do not even know how to plan for a weekend away next month. Any advice would be greatly received. Richard

  • After 18 years I can tell you it is a long and winding road...but time is on your side, enjoy your life...don't sweat the small stuff...

    Hope

    ~chris

  • Hi Richard. A frightening time I know. A good idea would be to write your own post. This way, your post will be seen by a wider audience and hopefully you will get some perspectives from people of your own age. Everyone here is going through the same thing but if you are younger (particularly if you have young children to raise) it )makes it harder still.

    Please believe me when I say that you WILL feel better. When first diagnosed, I felt that I would never cope.Read all you can (but be aware that many articles are out of date). Please don't imagine that every little ache and pain is CLL related. Give some thought to whether or not you wish to tell everyone or just a few.

    Use this forum for questions, feelings or just a rant. You will find a wealth of information here from people who understand how you feel. It's been a life saver to me.

    There are MANY new treatments on the horizon for us, we are in exciting times so take heart. You'll get there.

    Peggy

  • Thanks Peggy, I have just posted something. Richard

  • Richard,

    The sanity will return. We all went through it hopefully your family is standing with you.

    Advice, see a CLL specialist. That is a MUST!

    Stop having conversations with yourself. They won't help.

    I am borrowing a re-quote from someone on the ACOR site: "Worry does not empty tomorrow of it's sorrow, it empties today of it's strength." This was authored by Corrie ten Boom, a holocaust survivor.

    This site will give you some help. WE understand. Come here and vent, ask questions, whatever.

    There is hope of a cure now. Ask some of the veterans on this site how remarkable that is. Everything they have been through and all they want is to listen and also be heard. Most of all, to help. Welcome to the club we all hate being a member of. The cancer sucks but the people in the club are wonderful.

    Jeff

  • We all have our own journey with CLL but great to be able to share experiences and learn from many very knowledgeable people on this forum.

    I was diagnosed early 40s and at the time found it difficult to make every day decisions. Was hard to be told you have cancer and then be told watch and wait. Took me a while to get my head around it.

    Was treated with fcr a few years later and now 9 years on due treatmentin next year or so.

    Have learned to not sweat the small stuff and am able to live relatively norma life.

    I am one of the lucky ones and find a positive mindset helps me deal with disease.

  • My aunt who is 93 was diagnosed with CLL when she was in her 60's and she is still on W&W. It is a nuisance, but ultimately it will not be her demise. More likely it will be heart disease. I was on W&W and then my CLL/SLL became aggressive. I am being treated. Will the CLL/SLL kill me – maybe, maybe not. With the break through in treatments in the last several years, it is more of a nuisance. I could be hit by the proverbial bus or get killed in a car crash. Don't live your life in fear of events with may never happen. Be grateful that your timing is great with all the new therapies. You should be thanking your lucky stars.

  • Good to moan Buzzybab, Sometimes, all we need is a friendly 'ear'. It's tough learning to live with this isn't it? This is just the place to do it. It's hard sometimes with close friends and family who are so desperate for us to feel positive about our futures that WE feel we need to reassure THEM, particularly our children. It's ok to get down days but the future is looking brighter for us. Peggy

  • Your writing defines a truism of cancer. It is different in each case. Your version of Cancer is the same as mine, however our moment to moment path is different.

    So often a cure is more a sub class result. A longer survival is again a path of a sub class of the cancer. Early detection, modern kick ass treatment and answered prays all help patients. Nearly a year later I feel as weak and sickly as the day I dragged myself to the clinic. I hope the treatment has extended my life. But, understand I am just as unable to work today as the day I went to the clinic. I am not able to do the simple tasks such as sweep the kitchen floor without needing to sit afterward for a time. My Cancer sub group is nice to me, giving me enough time. I will not escape. This is my last illness.

    Here in Arkansas Ozarks USA us county fellows rate our self by how well we can fight the next black bear we walk up on. I must be on top within six seconds as after six I will be eaten. With my RBC count falling from 4 to 3, maybe four seconds now. Remember the army, are you the quick or the dead.

  • A time bomb is way I often describe it, but I'm doing my best not to worry about it at present. I've got it & now I have to get on & do the best I can to stay on W&W for as long as possible. If & when that becomes an issue I'll probably start worrying, but until them I'll get on with my life & try not to depress those around me.

    Take care, stay as positive as you can & try not to let having CLL get you down, easy said than done I know, but giving into it will only make life difficult far earlier than it need be.

  • I get it!

    Hang in there.

  • Hi Babs. I have had CLL for 5 years. As for my personal experience...I don't feel like it is a time bomb at all. I'm just tired, achy, lots of arthritic pain, lots of varied symptoms with no explanation...ear infections, shingles, hot flashes, brain fog, collapse from exhaustion, frustration with healthcare system, anger with doctors saying my symptoms are not related to CLL (please nobody send me info...it's CLL related)...but no time bomb. I finally liberated myself from the cancer circus and have reduced that stress in my life. I live without knowing, but there really isn't a lot of reliable research on it anyways and as I don't have the need to squeeze more time out of CLL with treatment that doesn't cure, I decided to just relax. I travel lots, still love working in the garden when I have the energy and for me, there's nothing better than sitting out with a glass of wine and listening to CBC's Vinyl Café. Yes, it's boring a lot of times as I I took early retirement, since I can't put in a day's work. But it's still better for me than watch, worry and not being taken seriously by the medical community. Hang in there, you'll find what works for you.

  • I do hear you.

  • This is a great post and a great position to take, Doc. Thanks; you made my day. Just finding this forum is the best that has happened to me since my diagnosis in 2012. I think it's the little things the body does that makes one wonder and worry. You nailed it, though. Relax and live your life! Carole

  • Hi

    I am apparently on the cusp of treatment after four years of watch and wait. I am told that with my readings I should be unwell, but I am not really with mild symptoms only. Having seen a good specialist it does help. I have now been informed that because I am 57 not 77 my readings are more positive and if I was 20 years older then I would be ill.

    Be positive and active. I can't afford a posh gym membership but I have just taken on an overgrown allotment for the annual price of a months gym membership to get more excercise. It has really cheered me up and made me so much more positive despite all the medical mixed messages.

  • Hi HappyDave...no gym membership? Walking is free. Go for it!

  • I am also in year 3 of stage 0. I just had my blood test and my doctor told me to come back in 6 months. I don't dwell on it, I work, see my friends and try to keep busy. I guess that's all you can do. I would like to have these cancer cells out of my body. This site is great, keep using it.

  • I feel alot like you. Im just married this month. He asked, I said no...I have cll. He said i'm going to be there anyway. I want to be there as your husband. Who could say no to that? But I still feel if I talk about it, my pain, my fears, I'll swamp him. My daughter was the one I could unload on, but she just lost her Dad, heartattack. So she is not up to hearing about her Mothers fears on a blow up any second illness... I fight with supplements, qigong, juicing to make sure I get all I can from food. Diet, no sugar, white flour, preservatives, artifical flavors and coloring. Last but not least my ginger tea. I only uses honey, or stevia for sweeterns. I drink baking soda 3 times a day to bring up my ph balance. I could get worse tomarrow, but I will no know, I did what I could...to starve it, fight it. I'm greatful for today.

  • Yes we do seem to be alone in this often; even with the forum I find this can be a lonely illness.Good luck and many blessings.

  • I've been at this for 3 years now. I go in and see my hematologist/ oncologist every three months. It's just enough time to almost forget CLL then I get reminded. My last visit my WBC jumped to 60. It's normally in the 40's. She wanted me back in 6 weeks this time. My wife and I got worrying what's going to happen next. Of course, I go back and the WBC is back down in the 40's. I'm thinking about dumping the every three month monitoring. I know what symptoms I have to look for.I understand that it will be an infection of some kind that will take me, not the CLL itself. There is nothing that they can do or will do for my fatigue. I'm pretty sure we would worry less with the every three month visit.

  • buzzybab wrote: "after 3 years of watch and wait I still feel like I am siting on a time bomb with no clock not knowing when it is going to detonate" " I find it hard to talk to my family and my husband of 40 years so I don't worry them. I know I am lucky with me not needing treatment and feel guilty for that is this wrong"

    Dear buzzybab: rather than thinking of CLL as a timebomb, you might think of it as a mud bog where the effects wear you down slowly and treatment can lift you out of the bog. It probably* won't explode suddenly but will impact you steadily over days and months.

    I have chosen to talk factually and realistically with my family and close friends that I trust. They tell me that the information, my confidence and optimism is the best reassurance that I won't die tomorrow.

    * I recently had some symptoms that I thought might be a transformation to a worse relative of CLL. My friends and spouse saw the worry and concern, but celebrated with me when a CLL expert and Neuro Ophthalmologist diagnosed my vision changes as dry eyes rather than CNS involvement.

    So your own attitude and feeling probably are visible to those that love you. I hope you can find a way to get more joy from life despite your CLL.

    Len

  • No point worrying ,let your Dr do that. "Worry about nothing...pray about everything "...Cat

  • Thanks to you all feeling loads better a lot more positive after reading all replies a new day a new start x

  • I feel that way sometime too. I go every three months for blood work one week and to see my doctor the following week, as I am 17P deleted, and during those two weeks I am miserable. Cranky, depressed, can't sleep and I feel like I am walking to the gallows. It's normal in my opinion to go off the rails every now and then. Be kind to yourself, you are dealing with SLL/CLL, what I like to call "the new normal". During your difficult times watch something funny, eat something yummy, have a glass or two, it really does help and remember there are wonderful trials with new and exciting drugs going on right now. If I have to have this, I consider myself lucky to have it now and not 10 or 20 years ago. Hugs - Susan

  • I feel the same...diagnosed in September of 2015 with wbc of 17. Now in March its up to 25 and alc is 18. waiting for Fish results. Numbers all going in the wrong direction.

  • Don't despair. There's lots of new and existing treatments thanks to all the lab rats before us. We owe them major thanks.

    Jeff

  • How are you doing these days????

  • Hi thanks for asking hope you okay still finding it hard sometimes put me back to three monthly instead of six numbers creating will know more after next appointment in November always get anxious before. suffering blocked ears at moment nothing working to releave symptoms go back doctors in a week do anyone else have same problem. again thanks for asking hope your journey going well.

  • I hope that they can find something to relieve your symptoms! Hang in there. Hugs.

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