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

CLL Support

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Feelsolow
Feelsolow

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

100 Replies
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Forget about depressing and outdated survival predictions on the net.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

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 !

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

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

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.

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

Feelsolow
Feelsolow in reply to 81ue

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

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

Newdawn
NewdawnAdministrator in reply to SMS-not-cll

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

Newdawn

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

Hidden
Hidden

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

Feelsolow
Feelsolow in reply to Hidden

Thank you Scott..that means a lot

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 is something wrong. My husband was diagnosed at 53 when he went to the doctor for a routine check up. We were numbed with shock and the first time we went to the cancer center, I cried like a baby. That was over nine years ago.

The best remedy for CLL is information and you'll find a lot of information on this website as well as support.

All the best,

D.

Feelsolow
Feelsolow in reply to Mystic75

Thank you so much.Best wishes x

Mystic75
Mystic75 in reply to Feelsolow

You, too!!!

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 find that ‘it’ actually leaves your mind for a minute. I know that seems hard to imagine at the moment.

Your youth, unfair though it seems, is a positive in some respects. You have strength on your side.

I know everything feels dark and hopeless at the moment and my heart goes out to you, but honestly there is much to be hopeful about.

If you have questions, ask here, many lovely people to help. If you just want a rant, that’s ok too-this is the place.

Try not to look to far ahead. For now just take stock and don’t google too much! This really is not the end of the world although I fully appreciate that it feels like it at the moment.

Best wishes

Peggy

Feelsolow
Feelsolow in reply to Peggy4

Thank you Peggy.Best wishes x

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 one of the new drugs - Venetoclax- right now, and I’ve got 3 overseas trips booked for 2018. Live your life to the full and keep doing what you’re doing. Cheers, Rob

Feelsolow
Feelsolow in reply to thb4747

Thank you for your support. Best wishes x

MsLockYourPosts
MsLockYourPostsVolunteer in reply to thb4747

Coming my way on any of these, Rob? You never know who you will get to connect with in person from these groups or where they will be from.

Im sorry i dont understand...can you explain to me. Thank you !

MsLockYourPosts
MsLockYourPostsVolunteer in reply to Feelsolow

Rob is someone who I have known for years on line, and though he is down under, or I am, depending on one's perspective, we had a chance to meet up on one of his trips maybe you and I, or others on this site, will also. I'm in the US, but there are many here from the U.K. An the support group there has periodic meetings.

There is a reply below specifically to you below.

Hopefully our paths might cross one day. Where abouts are you from ?

MsLockYourPosts
MsLockYourPostsVolunteer in reply to Feelsolow

Southern California, though many of the people I have met have been at the CLL Live event in Niagara, Canada. They are about every three years and the videos from the latest one, this year, are now on you tube. CLLSA in the U.K. has periodic meetings in various locations. They are usually posted here.

Not the USA just yet Pat. Not until I’m sure I can get travel insurance cover for pre-existing conditions. Off to Surfers’ Paradise in Queensland next week, Tonga in September and South Africa in October. I’ll let you know when I’m headed your way!

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 a minor inconvenience, and for some reason that phrase helped a lot. The advice you're getting here is really sound: Get a doctor you trust, then get on with your life and stay busy. Enjoy your family and friends. Keep living your regular healthy lifestyle. I agree too with others that it's important to keep your daughter informed. Mine told me not knowing what I was going through and feeling was more disturbing than having the information. Be strong. We're all with you.

Feelsolow
Feelsolow in reply to jwitts

I really appreciate your advice. Thank you .x

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 support. I wish you the best.

Feelsolow
Feelsolow in reply to dmmck

Thank you x

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 same things. It’s a new way of life where you take a little better care of yourself. That’s not so bad right? Be gentle with yourself, it takes a little time to adjust, but you will.

Feelsolow
Feelsolow in reply to KL2018

It means a lot to have your reply.Thank you x

Pat351v
Pat351v in reply to KL2018

I am just beginning my journey of cll. Went for a physical and wbc is 42.6...platelets and rbc normal. See a hematologist in Aug.

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 immediately and as I started reading through some of the comments realized that as gloomy as I felt, I was not alone. Treatment options are getting better every day!

I was diagnosed at barely 57 but suffered for a long time before that. When you hear leukemia, you think death sentence, but now I think "chronic disease". I started Venetoclax about a month ago and doing pretty well on it. I tried Ibrutinib first and it failed after three attempts - looking back it just wasn't meant for me! Folks here will tell you to steer away from older chemotherapy drugs as the new drugs target your disease and are much improved. As you see, many on this site have lived a long time past their diagnosis and treatment is better than ever.

My best advice right now is 'focus on you'. Meaning - don't feel sorry for yourself, but get out there and find the specialist that you best mesh with and get your family and friends involved (it's a great test to find the really good ones). You have a long road ahead, but with a good support system and meds it will be as long as many or most of your peers!

Sorry if this is too much too soon. Check back on this message later on. It may be more helpful then. Stay strong!

Thank you for your reply.It really is appreciated x

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 effective. When I was first diagnosed, my version was indeed considered always fatal. I managed to outlive doctor's expectations. 10 years later, I managed to start Ibrutinib. It was effective at reducing my tumor load. Recently, I have added a bit of Venetoclax. In the UK, there seems to be some political resistance to the expense of Ibrutinib according to the posts here, but it sounds like that will get resolved. I am on the west coast of the USA.

In the meantime, get on a healthy diet with minimum of meat and almost no refined sugar. Organic fruits and veggies for the things that are often treated with insecticides. You can easily find lists of which ones are worth paying more for their organic versions. You sound like you already have a physical job, but exercise is good. Horseradish and beets are good to have often. Turmeric, green tea are good.

If possible find a good integrative medicine team that combines Western medicine with Traditional Chinese, Indian Medicine or Naturopathy. They work well together. I am not sure about Britain, but in Germany I know such teams are common. And in Israel. In the USA, much less so. I am quite lucky to have an oncologist who has full respect for my herbalist.

MsLockYourPosts
MsLockYourPostsVolunteer in reply to tsvieps

In the US some cancer centers have MDs of complementary or integrative medicine who work with one's hematologist. It is becoming more available.

Your are partly correct, I think. Medical schools generally hold that if herbal medicine, Chinese Traditional Medicine, etc had any valid science behind it, they would be teaching it. Patients ask about it often enough that some bones are thrown toward such things. Fellow patient support sessions are encouraged and even meditation sessions. Our local medical school teaching hospital in Portland, OR offers acupuncture in its local clinic.

The cancer treatment wing of that hospital has a great reputation. Its head was a major force in the development of Gleevec, which attacks a similar target on CML as dose Ibrutinib for CLL. But I can tell you from my own experience that the well regarded CLL team there strongly discounts the use of any type of herbal medicine.

Per other posts by me here, I refused FCR and went on a path unique to me of off-label drugs and mostly Chinese herbal medicine. I outlived the vast majority of similar patients that took FCR. We managed to slow progress of CLL, not reverse it. But I lived just long enough (12 years) to add Ibrutinib to my protocol and now have shed over 95% of my tumor load. But my own experience impressed no CLL specialists at this teaching hospital. It was similar at the very well regarded eye clinic of this medical school.

My own oncologist, on the other hand, often thanks me for doing better than most of his patients and suggests my herbalist to many other patients. He also has Naturopath interns from our local Naturopath/Chinese Medicine School work with him. He is fully open minded and gets superior results. But he is rare. Sadly, he is retiring at the end of this year.

I asked him if any other oncologists in his office would work with me the way he does. The answer was none. He thinks maybe someone in an office on the other side of town might, but he is not sure. A friend, an internal medicine doc at Kaiser has studied and uses Indian Traditional Medicine (Ayurvedic). He says it was a long uphill fight there to make this acceptable. He believes there is one oncologist at Kaiser (to which we do not belong) who would likely work with me with respect for my current protocol. And he is in the next State over. My estimate is that there may be 2 such oncologists out of 100 here on the West Coast.

Germany I believe had the first school of Naturopathy and integrative medicine is more mainstream there, as it is in China and India. My herbalist was invited to Israel to lecture on integrative oncology and was very well received there by large audiences of oncologists. He is a former Catholic Franciscan Monk, not Jewish, but they asked him to move there.

So, yes, integrative medicine is kind of available here, but is generally discouraged in our med schools. Therefore only very independent docs encourage it and this is not necessarily admired by their peers. The proof is indeed in the pudding, but most docs will not taste such pudding. Some open minded docs have TV shows and are admired by many lay people, but are not overly respected by most of their doc colleagues. At least not yet. The fact that they often get better results, not withstanding.

MsLockYourPosts
MsLockYourPostsVolunteer in reply to tsvieps

UCLA has both MDs of integrative /complementary medicine connected with the hematology department (my hematologist had no problem referring me to one, as she felt that someone in that speciality could answer the questions I was asking better than she could) and the school of East / West medicine, so there are some centers. This is an evolving approach.

It is good to hear about UCLA. The fact that integrative medicine gets better results should help it propagate, but there is resistance from people who do not even know they are being obtuse. I do not think as some that there is some kind of conspiracy because drug companies want to keep their profits, etc.

But even nutrition courses are rare in US medical schools. What is more basic to preventive care?

By the way my first herbalist for CLL was not far from UCLA, on Wilshire in Santa Monica. A 38th generation Traditional Chinese Medicine doc. Father and grandfather is in the same practice. He is a licensed MD and surgeon in China. They also run a school of Chinese Medicine: Maoshing Ni

taoofwellness.com/about/

But my current herbalist is more of a cancer specialist.

mederifoundation.org/?page_...

Feelsolow
Feelsolow in reply to tsvieps

Thank you for your advice. I wish you well ! x

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 deciding that I could either roll over and die or come out swinging.

I was off work and basically bedridden for about 6 months and fairly ill for the first two years. That was before FCR, now considered to be the gold standard for many who need treatment, much less the new miracle drugs recently approved or in trials - 15 years ago, and I have spent most of that time being a boring patient (just what I want to be)! Many newcomers like you will go into watch and wait (translation - boring patient who doctors need to keep an eye on, for years).

Stay away from google for now. Everything I found said I'd be dead in five years - therefore I should have been dead before being diagnosed! LOL!

cllsociety.org has good basic information, latest research, and a great list links to CLL specific resources. The videos by Dr. Susan LeClair on Patient Power about understanding your labs are excellent and understandable. The post on CLL Topics - Three Important Blood Tests - is very helpful, though the site is no longer active, so skip information about things like treatment that have advanced since it was kept up to date. There is lots more good information here and on sites listed on the Society site.

Don't try to learn everything at once. You have time. Take a recording device (or phone app) to appointments. It's easy, when new, to become overwhelmed and have the brain just shut down. It really helped me to be able to listen what was said again. You didn't mention how old your daughter is, but if she is older, but not able to go to appointments, she might find it helpful to be able to hear exactly what was said.

As for dying, something like this can be a good reminder that all of us should have our affairs in order, because life is uncertain. I put a will in place, and now know I don't have to think about it. I plan to be around for a long time. At the same time, last night, coming home late, several police cars raced past me to what appeared to be a dead body on the side of the road - hit and run? Gang shooting? I haven't been able to find out. A reminder about that bus we might end up under with or without a CLL.

Terrified is normal. Doing some research, bit by bit (don't become obsessed with research) will help with that, and there is always someone here to talk you through the scary moment. Also finding the right doctor - someone who totally understands CLL and is a comfortable fit, personality wise, makes a big difference. Plan on being around for a long time! As much as we wish no one new needed this site, I suspect you will be a long term member, maybe even giving advice like this to the next newcomers.

Thank you for taking the time to reply.It really is appreciated. It has made me realize about getting my affairs in order too.All the best to you and I wish you well ! x

A great reply!!

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 site and others and realised that things weren't so bad. Four and a half years later I'm just having talks with my haematologist about starting treatment. Everyone reacts differently to diagnoses but I think your initial reaction is fairly typical. It's hard when we first have a brush with our own mortality but remember, whilst at the moment CLL can't be cured, there are lots of new and exciting treatments out there to manage it and more in the pipeline.

If you feel the need for support get in touch with support@leukaemiacare.org.uk or ring them on freephone 08088 010444. They have recently started a buddy scheme in conjunction with the CLLSA where you will be put in touch with a fellow 'sufferer' by telephone or email. You might find it helps to be able to talk things over with someone in the same boat as yourself.

Feelsolow
Feelsolow in reply to parkmoy

Wow..Thank you for your reply. It's nice to know I'm not alone ! x

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 hope and understand that this disease is slow moving, won’t kill you immediately, and responds well typically to the treatments available. There’s a however coming in a couple of paragraphs though.

Your bloods were at quite a high level to be first diagnosed with although others have higher levels without needing treatment straight away. Perhaps they want to rule out any abdominal or chest nodes that may be enlarging even tho the rest of your nodes don’t sound like they are enlarged (am I right?? . I totally agree with others that the first port of call, especially if treatment starts to be mentioned, is getting a CLL expert. As no official UK list exists I’ve started to construct one myself just looking at who has been an author on clinically relevant papers about CLL. I’d be happy to let you know where the closest one to you is if you share your location or at least mention your nearest city. I’m assuming you are in the uk but I could be wrong.

But having said all that. Here’s the however I would say one more thing. Give yourself the space to grieve. It’s ok to feel sad and anxious. It’s undersndable to spend a bit of time thinking about mortality. It’s ok if it helps you to find out a bit more about the different kinds of journeys which of course right now you don’t know which you will be on. It’s ok to be concerned about the uncertainty. You don’t know if you will be an immediately treated patient, a long and unadventful watch and wait, or a watch and wait with repeated infections and other problems. No wonder you are all over the place emotionally! Be kind to yourself. And don’t expect too much from yourself.

It will take time to adjust. Give yourself an easy time. Consider taking time off work sick for a while. Visit a Macmillan or Maddie’s Centre for support. Join a haematology face to face support group. Get a counsellor. Call a helpline. Approach someone on here you feel you can identify with and ask if they are open to a phone call. You may not want do all of that. But I’ve certainly done all of it and slowly but surely a process of emotional recovery begins.

If you feel up to it, and think it would help, Ive written my own story about how I reacted to my diagnosis and what I’ve learnt over the last year emotionally. I was a real basket case at the beginning and couldn’t have written as clearly as you did I don’t think.

Remember you are NOT alone. We will do our best to support you and over time you will start to support us too. And together we will stand strong against this horrible enemy of CLL.

I leave you with a link to my story. It does mention my Christian faith a bit but its not intended to shove that down anyone’s throat. wp.production.patheos.com/b...

Feelsolow
Feelsolow in reply to AdrianUK

Thank you for your advice, time and commitment. I shall read your story a little later tonight in quiet surroundings. Best wishes x

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 blood work like you. Our world was turned upside down and for months we thought the end was in sight. Thanks to this forum and the wonderful people who so patiently answered all my questions and fears, we have resumed real life! It took several months for us to get over the shock and depression, but I assure you that better days await!

Please ask any and all questions here. We learned far more here than even from his specialist.

I wish you well, write down all your questions for the dr and keep checking back!

Feelsolow
Feelsolow in reply to Loves2walk

Thank you for your response. Best wishes to you. x

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 crazy but after reading and being told I am on wait and watch, I’ve gone back to normal living. I am lightening my load a tiny bit to not do the heavy lifting and to enjoy myself. I am just as busy as ever with work and activities. My plan is to build strength and just see what happens and pray I stay in wait and watch or watch and wait, whatever it is called!!! Hope you settle down so you can relax. I’ve told some but not telling everyone and certainly not making social media announcements.

Thank you for your reply. Good to know I have support .Best wishes x

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 the best place by joining this group.there are a lot of very knowledgeable members by both research,experience and background.

I am carrying on my life and in fact signed up to do a 10k in July for Cllsa which is hard for me as I am not a natural runner.

You may not need treatment for years if ever,so carry on with your life.

We all wish we hadn't needed to join this club,but it is the best place to be for support ,knowledge,experience and help.

Jenny

Uk

Thank you so much. Very grateful for your reply . Best wishes x

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 to take Newdawn’s posts to heart. She and many others on this site are very knowledgeable of all aspects and consequences of the many unique CLL markers and our markers’ effects on our prognoses and our treatment options. Use everyone’s information, find a great hematologist/CLL specialist, gain all the knowledge you need to move from your low/scared state to a more positive state. Take charge and control so you feel empowered not depleted. There is much research about treatments for CLLers and continuing successful trials of many new drugs that you need to hear about and learn about to help you live your best life. Remember the “special you” and that CLL is one more component to address. BUT, remember, also, that we are all part of this very supportive community and will read and understand your much needed vents. Here you can write all the things you wish to shout to the world or at others in your life. We understand as others may not.

Wishing you the best care and the best answers so you can move from “so low” to “let’s go,”

And, as always, wishing good days and good health to all.

SMS

Thank you kindly for your advice .Best wishes. x

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 - yourself - for now. That is until you’ve gathered a bit more info from the great and the good, be it here, or your medics and begin to feel more ‘settled’ ( and you will believe it or not ! )

Then decide who else you would like share YOUR health info with ie Who in the long term, you feel, would be of genuine help and support to you when you have your wobbly ups and down days ... as well as all the good ones to ! 🙋🏻‍♀️ x

Feelsolow
Feelsolow in reply to Juliette02

Thank you so much. I really appreciate everybodys time and commitment. Best wishes x

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 let it get me down........ its easy to say now but we all had a difficult time coming to terns after the intial diagnosis.

Best wishes

Feelsolow
Feelsolow in reply to clifflee

Thank you for the reply.Best wishes x

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 before heart surgery, but that is my only experience with CT scans. Good Luck and God Bless,

Steve

Feelsolow
Feelsolow in reply to barger1951

Thank you for your reply..I think the C.f. scan is just a precautionary measure.Best wishes x

KAS8
KAS8 in reply to Feelsolow

I had a ct scan before my diagnosis and while they were running the flowsymetry to determine which firm of Leaukemia I had. It's to check the size of the glands inc the spleen

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 shock to be told you have an incurable blood cancer (cures are getting closer, though... maybe)... and then we google it and see we have x years to go (3-5 was median survival in my case, back then). It does knock you sideways. The figures are ALWAYS out of date, though, as treatments are improving at a remarkable rate.

2. Next stage is to find out if the disease is progressing quickly, or not - if not, then you may never need treatment at all, or not for ages. If you're in that category, just try to keep calm and keep abreast of the latest research on treatments and trials available in the UK - so that if and when it comes to it, you can request the best option. You may also have some symptoms that need managing (fatigue, etc.) and it seems to me that for many, these are actually more of a problem than the CLL itself if it doesn't 'require' treatment.

3. Should you be in the 1/3 approximately that need treatment fairly soon, bear in mind that for many of us the current treatments are highly effective (I had chemo nearly 6 years ago, and the CLL shows no signs of returning, yet.) And the treatment I had then is by now considered 'old hat' for many new patients, who will be offered a new approach.

4. Worst case scenario - actually it isn't, because we'll all die sooner or later - it's a good idea to sort out a will, etc. Any one of us could fall under the proverbial bus tomorrow, which gives no warning and can leave our affairs in a mess for our families. Best to avoid that situation, but really - you very likely will live to a normal or near-normal lifespan for someone of your age.

Oh, I should have said that I actually feel a lot better now than I did before treatment - the fatigue has gone, and I'm in pretty decent shape for my age (so long as you ignore the spare tyre... ;). Try to get used to the idea that this condition is there in the background, but keep it firmly there... in the meantime, live your life and enjoy it.

Best of luck for your future.

Thank you so much for your reply .Best wishes x

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 not looking at treatment for a while. I started on a new drug imbruvica on. August of 2017 and am feeling fantastic. I’m 73 a lot older than you and many more on this post. The feeling that I was going to die was so intense I wouldn’t go out for weeks and kept the dx from family and friends for 5 yrs. I would cradle my great grandson in my arms and bawl like a baby because I was so afraid I would soon die. Please live your life as best you can and be assured there are so many medications and treatments out and more to come I wish you peace And will pray for you. Try to be positive. This is a good site for information and helpful hints. Stay strong and have faith ❤️❤️🙏🏻🙏🏻

Feelsolow
Feelsolow in reply to Corkyrissa

Thank you so much for your time and advice. Best wishes x

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 was diagnosed with pancreatic cancer on his wedding day and died 3 weeks later. Those are all real, deadly Cancers with a capital C. CLL is not. As every one of my doctors has said, you die WITH CLL, not OF CLL. Many people live their whole lives with CLL and don't even know it. It is the one cancer with the best prognosis, most easily treated, and enjoying the fastest rate of treatment advances of any cancers. I explain to the few people I've told it's "small-c" cancer, "cancer-lite", half the calories, none of the taste. It doesn't deserve to be called cancer as that conflates it to equal with the more gruesome deadly cancers. When I was diagnosed after 6 days in the hospital, I was relieved and GRATEFUL. "Is that all?" I thought. I felt I dodged a bullet. And I was Stage II, unmutated and fast-growing. I got on a plane, saw 3 of the top CLL specialists in the country, and got into a clinical trial where I'm in the 5th week of treatment and everything's going well. My worst reaction to the treatment has been no worse than a bad flu or a hangover from a night of partying - and the worse my reaction, the more that means my treatment is working so "bring it on!" I feel exhilarated and grateful that I got something so easy to deal with. This beats a colostomy bag and a prognosis of an excruciating, slow, painful death. Keep it all in perspective and carry on.

Feelsolow
Feelsolow in reply to TimHB

Very much appreciated. Thank you so much .

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.

Thank you .Best wishes x

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 following a spate of urine infections. Worked long hours in a stressful role. Symptoms were headaches, tiredness (put down to life!), bruising (I'm a haemophiliac carrier) and night sweats (post menopause but thought it had come back to haunt me). Completely shocked when diagnosed with CLL having WBC of 77.6k.

Was placed on watch and wait were they tested me 3 monthly but sadly bloods didn't stabilise and I was put on the FLAIR trial. Long story short, I was pulled off the trial when they found I was Tp53 deleted which basically means I don't have the protein for chemo to attach to making the version of CLL high risk. This is 3% max of CLL treatment naive ( Protein can be deleted through chemo treatments). Anyhow every cloud, this meant that I could have Ibruitinib as frontline treatment and was eligible for a stem cell / bone marrow transplant.

Which ever type you have, you will adapt and you are in great hands in an era where the treatments are advancing at warp speed.

Sending love and virtual hugs

Xx

Feelsolow
Feelsolow in reply to KAS8

Thank you so much...sending love and hugs back x

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 husband 41 (17.5 wbc) was diagnosed last week, a total shock after thinking he had a food allergy! We have spent the week crying on and off and each day there have been ups and downs. But I have to say already I am feeling positive for him by reading stories such as on these replies that show there is so much hope! It’s amazing you were seen so quickly, my hubby heard over the phone and they have said it will be 6-9 weeks until we find out what stage he’s at!!! It’s going to be the longest 6-9 weeks ever! I just can’t believe the difference in NHS trust care!

I wish you well in your journey, I hope your daughter gets to hear some of these messages and gets comfort in the fact CLL isn’t immediate and it’s all unknown. I actually feel from my research over the week that half the people under 65 might not have found out the had CLL if it hadn’t been flagged during routine or other none related issue blood tests. So may be they had it then but just didn’t know, possibly we just now know and have to use it as a gift to live life even more fuller and have no regrets. All the best x

Thank you so much..Best wishes xx

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 required treatment. Very best wishes to you and I hope you find ways to relax and realise that nothing drastic is about to happen to you.

Clare

Feelsolow
Feelsolow in reply to Bramleys

Thank you so much..it really is reassuring to get all these replies xx

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 and was diagnosed as you were when I was 48 I have the consultant on Thursday and never know what he will say will be happening you just gotta roll with it.

Takes a while for the initial shock to settle never totally go but become easier but I assure you that we are all very strong people and draw on the strength of others.

Wishing you well , stay strong, you can do this ! 💪

Thank you so much. Best wishes xx

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 help for anxiety and depression, it has gotten easier to live with.

I do encourage you to find the best CLL specialist and primary care physician and have them help you through this. There are many resources available to help educate you and your family.

Best wishes

Feelsolow
Feelsolow in reply to pdmw

Thank you...it means a lot x

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) treatment. plus chemo pills (small amounts) and in 3 months complete remission. Residual amounts of clone cells cannot be detected. But they can lie dormant. I had no side effects like nausea or rashes or headaches. The pre meds they give before treatments including nausea, tylenol, anti histimine and steroids, as long as they are given proper time to work before infusion, eliminate those usual side effects. I feel better than i have in years at 73. I still work. But my advice is eat healthy, get rest and DO NOT OVERWORK AND AVOID STRESS.

Feelsolow
Feelsolow in reply to onu1tadi2

Thank you for your advice x

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 worry. Below i give a bit of detail on procedures i went through. I am in fact more active and focused than i have been in 15 years these days.

Feelsolow
Feelsolow in reply to onu1tadi2

Best wishes x

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 but enlarged lymph nodes ( pelvis, armpits..) following both MRI and CT scans. My diagnosis came via a gynaecologist and when I eventually saw my CLL specialist here in the U.K., she was surprised that I had had a CT scan and from then on she has used clinical examinations only to check on my progress. But the good news is that the initial shock and fear I felt early on gradually faded away and life returned back to normal - almost! I say ‘almost’ because I am now more mindful about how I treat my body and I try to eat healthily and exercise...in fact I’ve lost over 2 stone this year

(deliberately) and I feel great! In the last 18 months I have travelled widely and enjoyed time with friends and family- something I could not have imagined immediately following my diagnosis.

We’re all different and you will discover , over time, your own best coping mechanisms. I appreciate that ‘knowledge is power’ but for me, it’s on a strictly ‘need to know’ basis. I noticed how my anxiety levels soared after spending time reading/ watching videos ( from reliable sources) and so I spend very little time doing that. It’s common sense - but I spend more time on those activities and with those friends that make me feel better and raise my mood. After years of deliberating, I bought a lovely puppy - I can’t tell you what joy that has brought me -after the initial hard work of house training!

Physically I feel good. For me CLL has been more of a mental challenge, but it is one that I am managing. And you will too.

Best wishes.

Feelsolow
Feelsolow in reply to AR0613

Thank you and best wishes x

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.

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

Ironj
Ironj in reply to Feelsolow

My pleasure we all need help sometimes. John

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.

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

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!

Feelsolow
Feelsolow in reply to CLLmoxie

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

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"

Feelsolow
Feelsolow in reply to Funman

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

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.

Feelsolow
Feelsolow in reply to CM-CA

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

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.

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!

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

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