Newcomer: Hi everyone I've recently been... - CLL Support

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Feelsolow
Feelsolow
58 Replies

Hi everyone

I've recently been diagnosed with cll and tomorrow..I have my ct scan...I can't help feeling I'm going to die..it came as a shock as I only went for cholesterol test. My doctor ordered more tests and within a week I had marrow biopsy and results. I have no real symptoms.. and work really hard on construction sites...manual physical work..slabbing and kerbing. I'm 48 in a few weeks and terrified.

Post being restricted to the community by Admin

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Newdawn
NewdawnAdministrator

A warm welcome Feelsolow which is a sad name which no doubt sums up how you feel at the moment. We’ll have to work to turn it around to Feelsoconfident!

It’s such early days for you and you must still feel in a state of shock and bewilderment. It’s tough going in for a cholesterol test and coming out with a blood cancer diagnosis! We all understand how brutal and scary it is straight after diagnosis.

I’m not sure which country you’re from but you’re having an unusual battery of tests so soon after a CLL diagnosis. It’s generally agreed that CT scans are not usually necessary and 6 yrs post diagnosis I’ve yet to have a bone marrow biopsy. Have you been given any reason why these tests were being done? Have your levels found to be high at diagnosis? What kind of specialist are you seeing because it’s generally agreed that a haematologist skilled in CLL is necessary and if at all possible, a CLL expert as time progresses.

You’re very young for this diagnosis but otherwise fit and you must feel very scared. I certainly did when I was diagnosed at 54. The best advice I could give you is give yourself time to adjust before you widely disclose. The reasons why will become more obvious as time passes. Learn all you can about this condition because to know your enemy takes some of its power away. Avoid feelings of despondency and thoughts of dying. This condition isn’t created equal and much depends on our unique chromosomal profile as to how it will affect us and how quickly we’ll need treatment. As I said 6 yrs on I’m untreated but am now at a stage where treatment discussions are starting.

Forget about depressing and outdated survival predictions on the net. CLL is firmly on the scientific radar and treatments have advanced immensely. It could be years, decades before you need treatment so don’t waste them in a state of despondency.

There’s a wealth of information on this site and a huge number of fellow CLL’ers of all ages and at every stage of the disease. The support and understanding is there for you whenever you need it.

Please ask any questions and best wishes to you. When is your next haematology consult? Have you been given a staging yet?

Newdawn

29 likes
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Feelsolow
Feelsolow
in reply to Newdawn

Thank you for your reply.My blood came back at 100,000 last Friday.Haemotologist rang me to go to Hospital on Saturday as he suspected Cll.I went to the hospital next day for more blood tests.He said come back on Monday for results and possible bone marrow biopsy.My bloods were 100'000 on Monday.I had the biopsy on Monday too.Went back on Thursday to get it confirmed as being CLL...Stage 0 ...I think he said .Arranged for C T scan tomorrow 1.30 pm. I Live in England and appreciate your support . I'm going to a wedding reception tonight and might try a beer to relax. 1 week ago I was a happy go lucky guy without a care in the world..Now I have to see my daughter cry so much because she thinks im going to die This week im in a completely different world and frustrated.Im a fighter by nature..but I don't have a clue who my opponent is !

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Newdawn
NewdawnAdministrator
in reply to Feelsolow

This explains the Binet Staging (I’m also from the U.K.);

cancerresearchuk.org/about-...

This explains how to interpret your blood results;

cllsupport.org.uk/cll-sll/s...

Your world has been spun on its axis and you’re afraid and bewildered. Your biggest opponent at the moment is counteracting your own fear and you will, I promise. When I was diagnosed, I paced the floor convinced I should be crossing days off the calendar. I couldn’t look at my son without crying. That was 6 years ago. However, I didn’t disclose widely and that strategy served me well. You can’t cope with the reactions of others when your own are still so raw.

Get yourself out tonight and have a few relaxing drinks. It will be hard to get it out of your mind but you’re not in immediate danger. There will be hundreds more events like this and in time your world will start to settle.

It’s a very good sign that you’re feeling so well without symptoms.

P.S. Take care, (I’ve restricted your post to this community to protect your privacy as you’re newly diagnosed and may not have been aware of this function).

Newdawn

23 likes
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81ue
81ue
in reply to Feelsolow

This helps in understanding the blood numbers results.

cllsupport.org.uk/cll-sll/s...

Talk to your daughter about results and what the doctor says and let her know you'll keep her informed so she doesn't have the fear of the unknown. Your family will have anxiety about this too

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StarrVannah3369

Have faith. At stage 0..which is the very 1st stage.. I am sure that you have many, many years..if not decades ahead of you. Your initial response of fear of dying is very common and understandable. From what my Oncologist told me, that, although a high wbc is indicative of CLL, it could be higher at times if your body is fighting an illness in addition to the CLL.

It's continuous wbc that would give you a better idea. At my initial wbc of 60k, l was given a variety of tests while initially hospitalized including the bone marrow biopsy and a Pet Scan, amongst others. Although the results were initially scary to me, my Oncologist assured me that that level was not of concern to them at this point. Ask lots of questions with your Oncologist, see if there is a Support Group in your area, and continue to ask questions and read others questions and responses on this site.

P.S. At 51, My Oncologist told me that I am more apt to die from old age than my CLL diagnosis. I hope this brings you some relief.

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81ue
81ue
in reply to Newdawn

I agree with the recommendation not to look at survival predictions because they are outdated and don't necessarily relate to the new drugs available. It is a terrible shock when you have no symptoms. I suggest you don't tell co-workers and you tell only select family members and make sure they don't tell others. Keep your privacy during this time. Let yourself adjust to the news and have control over who knows about this and when they know. I wish you all the best

8 likes
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Feelsolow
Feelsolow
in reply to 81ue

Thank you for your advice and support. Much appreciated. Best wishes to you !

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SMS-not-cll
SMS-not-cll
in reply to Newdawn

As always your answer to another member to this site has encouraged me.

Sidebar: somehow I found a three-year old post of yours, and, not paying attention, answered it thinking it was current. Then I saw that you posted it three years ago.

Mea culpa..... and another lesson learned: always check time lines of posts.

Cheers,

SMS

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Newdawn
NewdawnAdministrator
in reply to SMS-not-cll

That’s not a problem. Appreciative words are never wasted SMS 😊

Newdawn

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SMS-not-cll
SMS-not-cll
in reply to Newdawn

Amen to that, Newdawn. It did give a bit of a chuckle, though, and a reminder not to be so impulsive in answering.

Being a retired teacher, I remember my main goal each day was to say only positive comments and to try to talk to as many of my students as possible. Now I apply it to everyone with whom I communicate.

Praise goes a long way and paves the road to improvement and create a positive atmosphere!

SMS

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Scottxxoo

FeelSolow

I was diagnosed about 16 months ago at 50. About the same, went in for one thing, came home with another.

Not much will change in your life. You likely have years or a decade or more before any treatment is done and then more years or a decade before the next one.

CLL won't end your life tomorrow or any time soon.

Scott

21 likes
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Feelsolow
Feelsolow
in reply to Scottxxoo

Thank you Scott..that means a lot

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Hidden
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So glad you found this forum Feelsolow, where you'll find loads of support and people with a lot of expertise who can help you work through this.

Receiving a CLL diagnosis is a often shock because many times there is no obvious indication there...

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Hidden
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Hi and welcome to this friendly, supportive group.

When I was diagnosed a little over 3 years ago, I thought I would literally die of fright. This took a little time to work through but truly you will come to terms with it. One day soon you will...

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Hidden
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Hi, I can understand your feelings (I was the same when I was diagnosed - 17 years ago!). Relax a bit - I know that’s not easy to do at this stage - because in those 17 years many new treatment options have been developed. I’m currently taking...

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Hidden
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Dear Feelsolow: Please know that everyone on this site has been through the kind of shock and fear you're going through now. I certainly did when I was diagnosed some years ago. My doctor told me to stop obsessing and just think of the disease as...

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Hidden
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I remember feeling the same way. The best thing to do is educate yourself about CLL. There are lots of new treatments on the horizon. The more I learned about CLL, the less scary it became. This is a wonderful place to find information and...

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Hidden
Hidden

I was diagnosed 4 months ago and pretty much cried for two of those months. It is a tremendous shock, but we are all here to tell you that you will get to the point where you forget you have CLL at times. You will look the same and do most of the...

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Hidden
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Glad you found this site Feelsolow! It took me two and a half years to get to this site, so you are way ahead of the game. Having kindred spirits to share experiences with and gain information is invaluable. I got great advice of what not to do...

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Hidden
Hidden

The bad news is that your are correct. You will die. But not likely from CLL. A run away beer truck is a more likely cause.

Tongue in creek, gallows humor aside, per other comments here, this disease has a lot of new treatments that are...

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Hidden
Hidden

My start was very different from yours. I was diagnosed at 55 after being ignored or written off by doctors for five years. I was very ill, and fortunate to have been referred to UCLA (University of California in Los Angeles) finally, after...

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Hidden
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Hi Feelsolow. I spent the first year after diagnosis convinced that death was imminent and resigning myself to it. I buried my head in the sand about the disease which is most unlike me normally. Then I started a bit of research and found this...

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Hidden
Hidden

Welcome feelsoslow. I can empathize. I was 46 when I was diagnosed and it devestated me for a while and at times I still get anxious a year on.

Everyone’s story is different. And I do agree with the encouraging words that it is important to have...

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Hidden
Hidden

I’m so sorry you are going through all this shock and upset, Feelsolow. I can assure you that you’ve found the right place for support and information.

Our story is the same as so many. My husband was diagnosed over 2 years ago, after routine...

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Hidden
Hidden

I’m newly diagnosed as well. Went for annual mammogram and kept getting called back because of lymph node abnormalities. The lymph nodes are my only sign. My wbc is 9.2 and I am awaiting genetic mutations results. The first week I was a little...

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Hidden
Hidden

Hi feelsolow,I was diagnosed Jan and thought the world had ended.i cried daily and felt like you.I was diagnosed and had many raised lymph nodes so knew something was wrong.Cll is no longer the first and last thing on my mind everyday.You are in...

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Hidden
Hidden

Welcome, Feelsolow,

I, also, am fairly new to this supportive site, but not to CLL, having been diagnosed 1/2014. My experiences are no where near as intense as yours so I truly understand all you posted.

I can only cheer you on and encourage you...

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Hidden
Hidden

Hi Feelsolow

As you can see and hear you have found a great place to be around - and as ever I agree with all the lovely and reassuring comments.

What I would like to reiterate though is Newdawns advice about keeping your newly diagnosed self to...

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Hidden
Hidden

Good luck, my bloods go up and down but so far I am 5 years without treatment, try to keep as fit as possible and most importantly stay postive.

I had a different cancer 14 years ago and am still here and enjoying every day I get, I refuse to...

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Hidden
Hidden

I am no doctor and cannot speak about your condition, only my own experience with CLL and CT scans. I have been seeing one of the best CLL doctors at Stanford since 2009. Never once did he do or suggest a ct scan. I did have a CT scan for my heart...

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Hidden
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Your post has really touched a nerve, and you've already had some terrific answers... I doubt that I can improve on the advice given already, but from a purely personal perspective:

1. Probably most or all of us panic on diagnosis - it is a real...

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Hidden
Hidden

Hi feelsolow

We have to work on a new name soon lol we all know the feeling u are facing now. Please be assured it will be fine. I was dx 10 yrs ago after a dx of breast cancer I got what I refer to as a twofer. If u are at stage 0 you probably...

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I lost a brother to ALS, a sister to Alzheimers, a mother to melanoma, a girlfriend to colorectal cancer and countless friends to colon, lung, brain, prostate, bladder cancer and Hodgkins lymphomas. Yesterday I attended the funeral of a friend who...

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Hidden
Hidden

I was asymptomatic also. The most important thing is to find a CLL specialist, and then learn as much about CLL as you can. 🙏 Wishing you the best.

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Hidden
Hidden

I remember that feeling so well. Time will heal you and you'll realise that it's not going to take over your life. There are so many options depending on what markers you have. Your specialist will guide you.

I was diagnosed at 46 by accident...

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Hidden
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Hi Feelsolow, I hope you are feeling a bit higher from these messages. It’s so heart warming that people have taken the time to respond and reach out to you with their storey, advice and support. It’s really helped me reading your post...my...

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Hidden
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Thank you so much..Best wishes xx

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Hidden
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I can see that you have had lots of replies to your initial post. We have all been shocked by our initial diagnosis and empathise with you. Please do not continue to feel so low. I was diagnosed nearly 5 years ago and so far, have not yet...

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Hidden
Hidden

Hi,

Do not feel like this please u will be okay we are all dealing with this CLL in our ways with different treatments out there. Good consultants and support from friends, family and fellow CLL in the support groups. You are not alone. I am 49...

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Hidden
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Thank you so much. Best wishes xx

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Hidden
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I was diagnosed at 55 with two young teens still at home. I felt the same way initially; I was terrified and became fearful and depressed. That was 6 years ago but as I learned more about CLL, my diagnosis, learning to live with it, and getting...

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Hidden
Hidden

No need to be terrified. Treatments nowadays are advanced and have few if any of the side effects of past ones. I was 72 when diagnosed. Had same tests as you. At stage 4. Had outpatient monoclonal antibody (avoids killing healthy cells)...

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Hidden
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You may not need treatments for years. Just avoid stress and over working. Read up on health. Enjoy a healthier lifestyle. I had no idea i had it until at stage 4 at 72 years old. Life and health now 2 years later better not worse. Try not to...

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Dear Feelsolow,

I am so sorry that you are feeling so low, but as you can tell from all of these posts, your words have resonated with many people - including me. I am 18 months into my own journey ; I was diagnosed early stage B with a low WBC...

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Ironj

Helllo Feelsolow

I’m young as well , I was diagnosed in March 2018 at 46. No symptoms In the construction field. It was found by chance. I have SLL it’s the same, I am in your shoes with the shock but getting better emotionally. I was thinking I was going to die very soon until I got a better understanding of this disease. It may never impact your life expectancy or never need treatment. 30 % of people never need treatment and live a symptom free life. The other 70% live for decades without treatment or some need treatment and live decades. Now for the big emotional part for me is even though I understand the fact that this may never impact my life or it could be decades away and as time goes on there more then likely will be a cure. I have a 14 year old daughter that I haven’t told because I’m symptom free and don’t want to worry her but I cry everyday worrying about not being around to see her graduate from school or get Married. All for no real reason because of the statistics. It will just take time to get past that part for me. I wish you the best and your in great company. The people on this site are very knowledgeable and can answer any questions, they’ve made it much easier for me to cope. Best wishes John ... if I miss spelled things sorry I am rushing I have someplace to be.

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Feelsolow
Feelsolow
in reply to Ironj

Thanks for your time and reply..your all a great help and it means so much to have your support...Rob

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Ironj
Ironj
in reply to Feelsolow

My pleasure we all need help sometimes. John

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StarrVannah3369

I can totally identify with your fears and anxiety. They are debilitating. Thank you for helping me realize that I am not alone

I was 49 when I was diagnosed. Told I've had it for 5yrs without being diagnosed. Currently been on Wait and Watch (I call it Wait and Worry) for 2yrs. So physically drained that I can not even do my daily household activities. I was told that my CLL/SLL was most likely caused by my multiple past use of Round-Up.

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Feelsolow

Thank you so much for your reply.it really is appreciated. Best wishes to you x

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CLLmoxie

I so understand your shock and initial despair. I too just went in for routine labs and was diagnosed 2/18. I thought sure I was going to die when I got that phone call. Now, I am convinced something else will get me before CLL does. Give yourself some time and grace, and hopefully you will find hope and peace with this ‘no so bad’ illness. Don’t be Dr Google lol, as that stuff is way out of date for us. LOTS of good info and great people here. You CAN do this!

1 like
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Feelsolow
Feelsolow
in reply to CLLmoxie

Thank you. It's nice of you to reply. Best wishes x

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Funman

Diagnosed 11 years or so ago. After a while you can start to forget about your cll. They caught mine at a rutine test and checked back at a 50 year old test I had had and they missed the high count. So add another 6 years I have had it for sure. Mabe longer. I have always caught Pnuemonia easy and didn't know why. Now it might be the CLL. Most likely.. So now I am in 17 years for sure and mabe longer. Started at about 9,000 WBC and stayed there for a few years then went to around 16,000 then a few years ago I went to 21.000 and am still there. So it don't pay to worry. I have made sure to take vitomens, don't drink a lot of beer and don't smoke. I still get sick easy. I catch a cold easy. Wash hands a lot. I need to be more active. I try to say it doesn't bother me but I have my days that it does bother me. Madison, Wisconsin. UW University Clinics. 1/19/2019. I hope I am posting on here 20 years from now. "funman"

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Feelsolow
Feelsolow
in reply to Funman

Thank you for taking the time to reply.it means a lot..best wishes to you x

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CM-CA

Hi,

Your post reminded me of how I felt when I was diagnosed with CLL. I had a high lymphocyte count from a routine physical- they repeated the CBC and got the same results, then sent me to a hem-onc who did a bone marrow biopsy, then CT scan. Then I was told I had CLL. I thought I was going to die. And at the time, statistically, I think my life expectancy was about 7 years. That was in 2000. I had just turned 50.

It’s 2019 and I’m still here! My advice is to learn as much as you can about this disease - it will help to control the fear - and hook yourself up with a CLL specialist. I’ve had several treatments including two clinical trials- I’m still in an ibrutinib trial that I started in 5 years ago and am starting to develop resistance to it, so my treatments will change this year - but they have made, and continue to make tremendous progress with CLL. I’m retired now and living a full, normal life, thanks to the fantastic doctors who take care of me.

So - get informed and find the best CLL specialist that you can. You are likely to live a long time, and treatment options, which are pretty good these days, will surely get better. They might even find a cure.

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Feelsolow
Feelsolow
in reply to CM-CA

Thank you for your reply it means a lot ..sending best wishes x

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showdog

I was recently diagnosed also beginning of the year. I was scared and crying at the beginning but it has settled in and I have done my homework. I feel great and no treatment. Stay positive dont let it dictate your life there is no need for that. I take supplements and exercise. I saw 3 doctors before settling on one that is a specialist. I got referred by a friend that had a worse form and he went through alot and with stem cell is cancer free. Have fun keep going like you have always done and ask questions in this group. You will be fine. Staying positive is half the battle and keep stress under control.

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Okeefish

Sorry for your diagnosis! It is way to soon to be so low! I was diagnosed after a blood marrow test following surgery in 2001. Just this past July my immune level indicated that Ivig was necessary. My oncogist told me years ago “ You will die with CLL and not from it” ! The best advice I have ever received! I am now 81 years old and CLL has not defined my life, or will it ever. God is my Shepard and I am in good hands! The Ivig is helping keep pesky infections under control. I haven’t had an infection or antibiotics since last July. The previous year was a constant siege of sinus and bronchitis infections with almost continuous drugs! I will pray that your CLL will be similar! If no major symptoms, I advise anyone to let a “ sleeping puppy snooze peacefully” and get on with a normal life! Love and hope always to you! God Bless You!

1 like
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Feelsolow

Thank you so much for your reply..sending best wishes from England x

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