CLL Support Association

How many years is it since your diagnosis with CLL/SLL? Please feel free to comment on your experiences of living with CLL/SLL. (Next poll will be on how long before treatment was needed.)

174 voters
V…02040Less thana yearBetween 2and 4yearsBetween 6and 9yearsBetween12 and 15years
AnswerVotes
Less than a year34
Between 1 and 2 years23
Between 2 and 4 years40
Between 4 and 6 years28
Between 6 and 9 years25
Between 9 and 12 years5
Between 12 and 15 years11
Over 15 years9
Vote on this poll
Reply to AussieNeil

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63 Replies
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During my seven years of living with CLL I have had two lots of chemo, first FC, second FCR, more recently a trial for Lenalidomide which I had to be removed from due to severe side effects. I am in currently in remission

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Coming up to 4 years. Still on watch and wait. Feeling quite good most of the time.

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I'm in the 1 to 2 year group. I'm going to be 72 this year and am feeling well. Aside from some visible lymp gland swelling in neck, not very much has changed in my quality of life. I remain optimistic. ... And wish you all well. Remain positive.. Some things in life we cannot change. Be thankful for the things we were able to..

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My husband is 77, was diagnosed just over 3 years ago, although they said they had known since 2006! Still no medication, still watch and wait. Check ups every 6 months, and although white blood count rises and rises, still feels well (we tend to put everything down to old age)!! Hope this gives some of you out there the feeling that all might not be lost. We were married 50 years last March, I must say I never thought we would make it, but we did and now every month is a bonus. I wish all of you and those nearest to you the very best. Sylvia

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Over 4 years since diagnosis and still on watch and wait, but an anomalous blood test result three years prior to diagnosis implies I've SLL for at least 7 years. Symptom wise, I suspect I've had it for well over 10 years.

I'm sure many people have CLL and aren't aware of it, particularly the elderly.

How many people that have died from pneumonia or an other opportunist infection actually had CLL that reduced their immunity so they couldn't fight off an infection?

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It will be interesting to see a picture of on-line community user's time with CLL. I hope this reassures that there is much life with CLL and we can benefit from our shared knowledge. May I remain on watch and wait for a second three years before I have to consider a treatment :-)

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Hi - this month is the third anniversary of my diagnosis of CLL at 49 (they think i had already had it for previous 5 years) still on W&W and doing great - hardly display symptoms of cold/flu though i do get the sore throat, which is hard to get my head around! The diagnosis led to a reevaluation of my life and a change in work, i now run a community project offering therapeutic creative activities for health and wellbeing and as much as my condition steadily deteriorates my outlook and energy levels just keep in improving.

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I was diagnosed in 2006 aged 49, but my previous routine blood tests show that I had probably had CLL since 2003. I'm currently in remission following treatment and feel terrific.

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I'm aged 54 and in my 8th year of living with CLL on Watch & Wait. I do get fatigued easily - more so when fighting an infection.

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I have lived with the fact I have CLL for 12 years. I'm 71 and just cycled thro' Wales in the awful weather of last week, camping. I did intent to continue on to Norfolk but the weather beat me, not the CLL. Had to bale out at Shrewsbury and catch the train back. Still did 200 miles in 5 days.

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Am on watch and wait with antibiotics for all infections. Incredibly tired yet manage to work full time. Have developed arthritis with horrendous pain though. Cope with paracetomol and ibuprofen gel . Very lucky really.

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I am on WWWNCP: Watch, Wonder, Wait for a Non-Chemo Protocol. I am stage 3 because of spleen involvement. My HGB and PLT are very low but not dangerous. Dx 2000 but certainly doc believes I should have been dx in 1997 bec. I was sick soooo, so often those 3 years. Hem/oncs are not as concerned as I am at the moment.

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I was diagnosed with CLL 4 years ago but it showed up eighteen months earlier in a blood test but was missed. I had FCR after one year and have been in remission for two years. I thought things were going well but was hospitalised with pneumonia last month when it was discovered I have stage 4 adenocarcinoma of the lung, even though I have never smoked and had a clear chest X-ray last year!

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Right on the cusp of a year so put myself as 1-2 years. From diag (suspected following a routine blood test at my GP), through confirmed (by specialist at Christie) to treatment was only a couple of months. Come July 12th it will be a year from first time I sat down and confirmed my name and dob for my first Ritux.

In run up to treatment was tired(sleeping in evenings) & snored loudly when sleeping. Currently, no snoring, and no evening naps and feel good at present (holding a piece of wood as I type this)

rob

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5 years. Had chemo last year FCR+M. Felt awful. It took out white cells but also quite a lot of my red blood cells so became terribly anaemic. In remission - hooray, but do get tired and oddly lots of sore throats that never get really bad but hang about for several days then go. Now working part-time.

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Diagnosed since 2009 but more than likely had it several years previous to that date.

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I was diagnosed 18 months ago, but a year before diagnosis had an elevated white count the doctor was concerned about. I work full time, and have turned vegan, which I thought was impossible, and take green tea and vit D as per the Mayo clinic research. I feel well at the moment and have a lot of energy. I have a large lymph node in my neck, that is my only symptom.

I had a set of bumps on my stomach and buttocks. They were not itchy and did not bother me at all. I went to a dermatologist for diagnosis and she was rather pleased with the bumps. Had no idea what the bumps were from, but later with a biopsy found it was caused by my CLL. She took pictures of me, had many of her interns come and have a look, and guess what the bumps were from. She seemed rather pleased with me and my bumps and later put me in a scientific journal as a medical test, to test other physicians to see if they could determine the cause of my bumps? My CLL journey has been jam packed with all kinds of interesting people coming to have a look at my naked backside.

Perhaps I should have charged a fee!!

Musicguy

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Hi Misicguy -

Just windering what type of bumps were biopsied. Reason I ask is that I have had lipomas for years and more have sprung up since being diagnosed with CLL.

Thanks.

Ned

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Hi Ned,

Musicguy wrote this reply 3 years ago and may no longer be actively involved in our community. I suggest you PM him directly: support.healthunlocked.com/...

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Thanks.

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Diagnosed seven years ago almost to the day. Still on watch and wait and fairly stable. Not to keen on the term 'wait' which my dictionary defines as the expectation of something to occur !

Try to keep fit - run about twenty miles a week. Also drink loads of green tea.

Have entered the Birmingham Half Marathon in October when I shall be seventy - running for

'Cure Leukaemia'.

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I was diagnosed seven and a half years ago when a locum doctor I saw about something else noticed d I was very pale and had blood tests done. I am still on watch and wait with little rise in white cell count. I do however often suffer from fatigue. I have a cat and dog allergy and have noticed recently that I am affected with asthma much more quickly and take longer to get rid of symptoms. I have no knowledge of SLL could someone explain that for me please?

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CLL and SLL are the same cancer. CLL primarily is seen in the blood with a raised B cell count. SLL is seen primarily in the lymph nodes and only very much later may appear in the blood in about 30% of patients...

Both, CLL and SLL have bone marrow involvement and patients are considered to have a compromised immune systems.

They are treated exactly the same currently...

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Thank you for your explanation of CLL/SLL. I am finding this Health Unlocked very helpful. I wish you well.

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14 years watch & wait...a 3 year regression 2008/2011, treated in 2012.... 6 rounds of FR a one month remission, a tumour lump prompted a diagnosis for de novo Richter's transformation. 3 rounds of RCHOP, rituxan, cyclophosphamide, vincristine ( oncovin) and hydroxydaunorubicin, prednisone ....severe heart and nerve damage and shingles... treatment changed to REP... rituxan, etoposide and prednisone... plus two months of dexamethasone...a second corticosteroid. 2013, 10 rounds of radiotherapy to prevent spinal infiltration...

Currently, my bloodwork is all within range and no sign of diffuse large B cell lymphoma...at the moment.

A fragile remisson...perhaps. My hair is returning very dark and my skin has been chemically tanned to a fine Corinthian leather, what's not to like. ;-)

~chris

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Diagnosed 2009. First treatment 2010 of FC but only one cycle. Second treatment of FCR 2011 again just one cycle. Third treatment of FCR 2012/13 five cycles this time but just a quarter dose of FC. Have felt well all the time apart from two infections. No real symptoms other than enlarged lymph nodes in neck prior to first treatment and tiredness seems to be more noticeable these days. Still enjoying a full and active life but have some concerns as to what happens next as do not appear to be atypical as far as current treatment regime. Only recently found Healthunlocked and what a body of information.

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Diagnosed with CLL (Trisomy 12 and low CD 38) in October 2005 on a routine blood test . Started treatment with FCR (F and C at half dose) in late November 2012. Reaction to Rituxan at beginning resulted in high temperature and hospital admission for a couple of days. Later had a low Haemoglobin level that required blood transfusion. Currently on the 6th and final cycle of treatment with a couple of days left of chemo tablets...Hurrah!!!!!

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Coming up to nigh on 17 years July 2013 Dx 95/96 No treatment, no tests, no prognosis, just watch and wait !! Mind over matter lol!!. Guess something else will get me, not the CLL !!

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Wow that's amazing👍👍

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Diagnosed six years ago but probably had it for two years before that. Still on watch and wait, now sixty eight. no symptoms except mild fatigue occasionally and a WBC of two hundred. I enjoy good health, do not sleep during the day and my last cold/infection was two years ago. however being disabled due to worn out hips that they will not replace due to CLL am not as active as others sportwise but still carry out normal daily tasks like shopping and gardening(two Acres!) We have started talking about treatment with a trial of one of these new drugs but am reluctant as I enjoy good health and a lot is happening out there in drug development. I would appreciate any comments from anyone who has had Ofatumumab in combination with Chlorambucil or Bendamustine.I was advised that the best way to deal with cancer was to stay positive go for the check ups and then forget about it until the next check up and get on with my life in the normal way keeping busy with lots of distractions that preoccupy the mind preventing dwelling on the CLL.

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Diagnosed last June at 54 years old. Taking green tea supplements and maitake mushroom supplement. My doctor told me that my numbers improved since my last blood work 6 months prior.

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Hi lego4,

I have never heard of maitake mushrooms! What form do you take of the mushroom and what is the daily intake. I am always interested in natural plants to aid in disease delay. I am presently taking green tea and vit D, as per the Mayo clinic research.

Music guy.

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Dr. Shulman of Memorial Sloane Kettering Cancer Hospital in New York recommended both the maitake mushrooms and the green tea supplements. I have included the info below along with the links of where I purchase them:

maitake mushrooms: Grifron MUSHROOM WISDOM Maitake Mushroom Extract D-Fraction 360 Capsules ( I take one in the morning after breakfast and one before bed)

amazon.com/MUSHROOM-Maitake...

green tea: Source Naturals EGCG 350mg from Green Tea, 120 Tablets ( I take one daily in the morning)

amazon.com/gp/product/B0010...

If the links do not work just copy and paste into your browser.

I am going to another doctor on June 13th. I found his name on this site in a list of CLL specialists. He was said to be the "godfather of CLL." I live 40 minutes away from his office so I decided to get another opinion. I will certainly post any recommendations I get from him on June 13th. In the meantime, I would certainly consider the maitake mushroom supplement.

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There is an interesting APP on the use of herbs from Memorial Sloane Kettering Cancer Hospital

mskcc.org/apps

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my husband diagnosed 11 years ago , immediate treatment , 5 yrs remission , more treatment , 1yr, remission and then p53 delition . 3 yrs ago had bone marrow transplant , and the last 3 yrs been dire , with graft verus host disease and loads of complications from it . anyone else gone thro to this stage ? seems most peeple on the site are on watch and wait .

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Hi, I am not going through this at the moment but have in the past. I had major problems with, and the consequences of treatment for, it for years. I was treated with photophoresis for 2 years and high doses of steroids for more years than I care to remember. They were not easy years and seemed never ending. But I am now well enough to work, have a good level of energy (for me), cope with infections with the help of antibiotics and am back on W&W. It was worth the fight!

I hope you and your husband hang in there and come through this difficult time sometime soon!

Best wishes,

Val

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Diagnosed in 2005 aged 35. Still on 'Watch and Wait'. WBC steadily increasing and lymph nodes swollen in neck. Get very tired, but managing to work full time as a teacher. Interested in getting Vit D levels checked - do you suggest I go to GP and ask for this or wait til September for next appointment with consultant?

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I was diagnosed on 5 Jan 2013 and at last appointment was told that I will go for treatment probably in June 2015 dependent on bloods taken this month. This was sooner than I had thought it would be as I was under the impression it could be years before treatment. I think I was in denial that I had CLL being on w&w and feeling okay apart from tiredness.

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R\os123, Do you know what changes in your blood test results are behind your likely start on treatment next month? If you are feeling well other than tiredness (which isn't debilitating), CLL specialists are unlikely to start treatment unless your platelets are getting dangerously low or you are becoming very anaemic. High or rapidly climbing lymphocyte counts are not necessarily a trigger for treatment on their own if you are feeling well.

Neil

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Hi Neil, I think that it is mainly because of an I have had very large lymph nodes in three areas (Neck, underarms and spleen), which before thyroidectomy (Graves disease and a huge goiter) three years ago, they just put down to thyroid issues because they were aware of only the ones in my neck. Dont think my bloods are very bad think maybe the spleen might be the issue (but Im not that informed about them). I do have a recurring pain in my side and can very tired sometimes quite easily. Think I have had it for much longer before diagnosis and think they should have picked it up when I had surgery. Last bloods were WBC 27.5 (4.0-11) RBC 4.59 (3.8-5.8) Hemoglobin 139 (115-165) MCV 91.1 (80-100) MCH 30.4 (27-32) Platelet Count 166 (150-400) Neutrophils 4.8 (2-7.5) Lymphocytes 21.2 (.5-4) from 11.2 in Oct 2014 (Could this be it?) Monocytes 0.9 (0.2-0.8) Eosinophils 0.4 (0-0.4) Basophils 0.2 (0-0.1) ESR 11 (1-12) GFR 59 (less than 60) Urate 404 (140-360) High?TSH 0.11(0.15-4) (low means perhaps over medicated) same with FTH 20.4 (9.9-20.7). Sorry for so much info. Just about on top of thyroid bloods after all these years but still very much thick about CLL bloods so any thoughts would be appreciated. Thanks for all your useful posts.

Rosslyn

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Sorry Neil I promise just one more! If there are any questions you think I should ask please let me know. Would appreciate it.

Thanks (again)

Rosslyn

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Rosslyn, there's nothing in your blood results that indicates a need for treatment. While your lymphocytes are higher than the normal range, that's par for the course with CLL and we have some members with readings 10 to 15 times higher than yours that still do not need treatment as they are otherwise fairly well, other than the expected fatigue and immune complications. CLLL specialists don't even start looking at doubling times if the lymphocytes are under 30.

Do ask why you have been told you need treatment and if it isn't due to dangerously enlarged lymph nodes of which you are unaware, get a second opinion.

Neil

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I was just diagnosis with CLL a week ago, still in the shock faze. I'm 34 and have been told that I'm really young for this. They told me I'm at Stage 0 and will get my blood work done every 3 months to kinda watch it.

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Welcome Luke!

While you are young for a CLL diagnosis and the median age at diagnosis is in the early 70's, there's a long tail down into the 30's and we have other young members around your age. Because CLL is a chronic disease and the early stages of CLL are symptomless, many of us can have it unknowingly many years before having it diagnosed unexpectedly. Check our poll on how we were diagnosed here:

healthunlocked.com/cllsuppo....?

I'm guessing that you too were diagnosed incidentally like many of us? If so, take heart that you now know that you can take action early to improve your life while living with CLL - something that you may have continued on not knowing about for many years yet: healthunlocked.com/cllsuppo...

We all go through that shock phase on diagnosis and some members have captured well that frightening experience in our pinned posts section, which has other very helpful posts for the newly diagnosed:

healthunlocked.com/cllsuppo...

Being diagnosed at stage 0 and having 3 monthly blood checks in the Watch and wait (and inevitably worry) stage indicates your specialist isn't too concerned about your CLL and it may be years or decades before you need treatment. I was diagnosed at stage 4 over 6 years ago and had monthly blood tests for the first 18 months before they were gradually increased to 3 monthly. I'm still in watch and wait.

Don't hesitate to ask about anything you can't find answers to via the pinned posts and site search.

Neil

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Neil, I really appreciate the response! The links you sent have been super helpful. I have already changed my eating and exercise habits. Working out more and eating a lot more healthily. Just still trying to figure out all this CLL stuff. It's good to see so many positive people on here.

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Hi Luke just wondering what were your symptoms are how was it diagnosed

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First diagnosed October 2008 had FC six lots monthly. Blood tests monthly for six months then on to quarterly tests. 2012 scan for arthritis in hips and back showed up shadows on lymph nodes. MRI scan confirmed Lymphoma was back, six lots of FCR, since then been on daily co-trimoxazole and aciclovir, every three weeks get immunoglobulin infusion. It used to be 50mg of Octagam now changed to Kiovig 50mg. Just back from infusion today.

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Sounds like you're a seasoned CLL patient unfortunately, but it must be reassuring to know that you are being well looked after. What was behind the change in IVIG? Did you have an unpleasant reaction to the Octagam? If so, hopefully the change will prevent that as it's often all that's needed.

Neil

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Hi Neil

Thanks for taking the time to reply, I asked the nurses in the ward what was the difference between Octagam and Kiovig they said there's practically no difference except that Kiovig can be administered slightly faster, and it's cheaper, I will be taking this up with the haematology consultant at next appointment at the end. September as I feel I'm getting tired quicker in the 3 weeks between treatments, my GP gave me a prescription for energy drinks called Forti Juice and they seem to give a wee burst of energy when needed. I took early retirement this year so I don't have to worry about work, as I'm 60 I can have some fun with my young grandkids.

All the best to everyone

Willie

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I was diagnosed with CLL in October 2010. Treatment with FCR started in February 2011 and finished in July 2011. Since then I lived a 'normal' life (work, sports, family, etc). In February of this year my white blood cell's were increasing, upto a value of 230 last Wednesday. A few weeks ago I got the chance to attend the Phase III trial on Venetoclax (ABT-199) in combination with Rithuximab. Last Thursday I started with a low daily dosis (20mg), from Wednesday till Friday in hospital. Tomorrow I am returning to hospital because the daily dosis will be increased to 50 mg. Of course I am very curious to hear/see what the blood values did last week. Good to say that are almost no side effects until now.

Wishing you all the best.

Korstiaan (The Netherlands)

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I was diagnosed with CLL 21 years ago when pregnant with my daughter ( I was 37 at the time). I had a son 17 months after her birth. I had a SCT in 1999 and a DLI in 2003 after which I was ill with GVHD for some time. Despite having relapsed again, I am back on W&W, working full time and living a normal life with slight adjustments . Glad to be around still!

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Glad to hear that you are still around and doing well despite some pretty tough treatments during your 21year life with CLL. (For others reading your history, SCT is Stem Cell Transplant, DLI is Donor Leukocyte/Lymphocyte Infusion - a possible treatment in case of a relapse after a transplant and GVHD is Graft vs Host Disease, a possible complication from a bone marrow transplant.)

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Wonderful news!

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9 years, diagnosed Jan 2006. Watch and wait until August 2012 when I began treatment with rituximab and prednisolone (had two doses of vincristine as well but started to get peripheral neuropathy so we discontinued that). In March this year I finished 2 years of 'maintenance treatment' with rituximab. Am awaiting results of my CT scan to see how things are going.

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Diagnosed July 2015 at the age of 55, female, but more than likely had it since 2013. On watch and wait. Feel great. Six month checkups. No change so far. Thank goodness I found Healthunlocked👍🏼

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I was diagnosed in 1998 at the age of 44. I've been watching and waiting for 19 years now! Destressing my life as much as possible was the best thing I could have done for myself.

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Diagnosed in 2012 at the age of 63.Probably had CLL for 5 years before as I had severe reaction to no seem bites. Still on W&W but fatigued most of the time but I just keep going so I sleep better at night.

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I was diagnosed in 2011 and started treatment in 2012 , had complications so. so finished Chemo in Jan 2013 . Have been in remission since then and have regular check ups. Has anyone else been in remission for any longer than 4yrs

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Diagnosed in 1998, and living with CLL for over 19 years. As someone said, good to be alive still. :)

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Diagnosed 03.11.2015 i remember it well as it was my 55th birthday. Had 4 rounds of B &R in 2017 in remission for a year this week.

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Diagnosed in 2006. Still symptom free and therefore no treatment.

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6years

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10 months ago, aged 50....w&w

Generally feel ok, bones and body aches, fatigue meaning half hour early evening naps most days, then feel fine again

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