Hi,Just joined! hope to get some good info and chat!

[Bankiedonnie67]

Was diagnosed only last week,so its still a blur in my head what is happening,think every pain is connected. Have had pain in my neck area for a good while,is this connected to CLL? moves from left of neck but mostly on right side,no noticeable swelling though.Can anyone tell me what the first signs of CLL are? Many thanks Donnie.

[Newdawn Administrator]

Hi Donnie and a warm welcome to the site! 😊

You absolutely will attribute every ache, pain or twinge to CLL at this stage but it’s unlikely to be responsible unless you have enlarged lymph nodes pressing somewhere. That doesn’t sound to be the case from what you say.

When diagnosed at an early stage, there may be few to no symptoms with CLL. Quite often it’s discovered during an unrelated blood test. An increase in your lymphocyte count (ALC) usually alerts medics to the possibility of CLL. This will be monitored now but doctors rarely get excited until levels reach 30 and begin to double in 6 months. This may take many many years or not at all in very indolent cases. We are all different and CLL/SLL comes in every variety of intensity and severity. It was 7 yrs before I required treatment. I’m also in the UK.

My advice would be to steady your world for now because the diagnosis is a shock. Be selective about who you tell because CLL can be a long marathon. Learn as much as you feel you need and be careful to keep up with vaccinations and other health checks. Whilst CLL is a pain in the neck, it may be muscular or joint problems causing yours at the moment.

There’s a wealth of experience, advice, support and friendship on here so never feel alone with your condition.

Best wishes,

Newdawn

[Bankiedonnie67 in reply to Newdawn]

Many thanks for that Newdawn,will take it on board,mind is racing just now!

[Rich316]

Hi Donnie,

The first symptoms of CLL is very often anxiety and worry because as Newdawn says, it is very often diagnosed quite randomly by a routine blood test. I too was diagnosed (in 2009 at the age of 44 ) 7 years prior to needing any treatment. I actually said to my consultant at that time, ‘I wish I never knew I had CLL until a few months before treatment so that I could have just lived a normal life without worry’ . Newdawn’s advice is all good. Steady your world and seek some advice from your Haematology team. Also (when the time eventually comes) the treatments available today are very effective, very well tolerated and there are many - with more in the pipeline.

The bottom line is you very probably definitely have years and years of time to worry about CLL so it is a good time to try and learn not to. The good people on this forum are here to help.

[Bankiedonnie67 in reply to Rich316]

Hi, many thanks for your kind words and advice,not been to haemotology yet so that will be an experience,can you tell me what to expect on first visit?

[Rich316 in reply to Bankiedonnie67]

I am sure it differs from area to country, depending on who you see. Some Haematologists have specific interests so if you get a CLL specialist all well and good, but at your stage and if your Lymph count is relatively low then it doesn’t really matter - plenty of time for that. You will most likely have bloods (Full blood count and specialist bloods) taken to see where you are with your Actual Lymphocyte Count (ALC) and Haemoglobin, Neutrophils etc. also to see if you have any mutations in the CLL cells (I started off with no mutations during my first 7 years on watch and wait (or monitoring phase as it is now called as W&W is a horrible term ) then after my first treatment of FCR chemo and following relapse of remission 4 years later I showed a TP53 mutation. This would have been more significant 10 years ago as it may have limited treatments, but there are more treatments on line now and I am on Venetoclax and Rituximab and back in remission.

You may have a CT scan, a poke and a prod to see where you are with lymph node and spleen size and You will then probably have a chat with a consultant on your team and discuss what they are going to do (or, most probably not) probably 3 or 6 monthly blood tests to see how you are progressing - this is the time you may try and learn to live with it as the next seven years were UNECESSARILY horrible for me as I worried about it and looking back there really wasn’t a need for it. And, as Newdawn said, be selective who you tell cos you are going to be around a long time and all those people you tell now who have less of an understanding of CLL than you will be wondering why you are not dead yet in 15-20 years time 😂.

There are far more knowledgeable people on here than I when it comes to the technical stuff about CLL (we even have a clinical scientist who is brilliant and very informative) and the administrators (Newdawn, AussieNeil et Al ) are very helpful. They may be able to help with questions you may want to ask at your first visit. You are just as much in charge of your journey as your clinicians and showing them that you have a bit of an interest will hopefully make them more interested in you (my team must think I am a right pain in the arse) .

Any time you need a chat just post and someone will be about.

Take care and Pob Lwc (good luck).

[lankisterguy Volunteer]

Hi Bankiedonnie67,

-

Welcome to the club none of us wanted to join.

There is lots of information and learning available on the page you are viewing.

(On a computer there are boxes are in the right column, on mobile devices please scroll way below- to the bottom of the page).

Take your time to open & read all the links in the box on this page labeled:

Pinned Posts

*HU CLL Support Community Guidelines along with further recom...

*Newly diagnosed with Chronic Lymphocytic Leukemia or Small L...

*30 tips for living well with CLL (an update of "Coping Strat...

*12 TIPS to get more out of this CLL Support forum - and help...

*VACCINATIONS FOR PEOPLE WITH CHRONIC LYMPHOCYTIC LEUKEMIA (C...

-

Then you can read the experiences of others just like you, in the box labeled:

Related Posts

*Some good news and hope

*getting some hope at last

*Just joined, looking for some help please?

*Need some info please.

*Just diagnosed today, scared but hopeful.

-

Len

[Bankiedonnie67 in reply to lankisterguy]

Cheers Len,will have a look at all of this,very informative,many thanks.

[scryer99]

Welcome - I was diagnosed at a similar age and it was a big adjustment psychologically.

Keep in mind that...

1) Many folks live with CLL for many years with relatively little impact. My rough-cut summary is 1/3 never need treatment, 1/3 go many years before needing any treatment, and 1/3 have a faster progression.

Given those numbers, you may want to be careful about broad announcements on this topic, telling any children, and any employer conversations. You might go several years before anything happens other than quarterly blood draws. I hope this is the case with you.

2) If you're in that last third (I was), know that the treatments have progressed a great deal in the last five years. This means much of what you come across on Dr. Google will be out of date, and this includes survival rates and many scary treatments. That's not to say this is the "good cancer" - no cancer is good news - but you are quite likely to live a near-normal life.

I'm writing this from an infusion chair, but treatment is going well and I expect to be "back to normal", more or less, for several years to come.

This community is a great resource, and is stuck with me because they provided great advice that helped me six months back. Also check out cllsociety.org which has a nice layout for newly diagnosed patients. CLL can be complex in diagnosis and treatment selection, and patient knowledge is clearly associated with better outcomes.

[Bankiedonnie67 in reply to scryer99]

Hi Scryer99,many thanks for sharing that with me,feel a bit more positive as i have been reading Dr Google! will stick with this community as i have had good advice and support in such a short time.will check up on cllsociety.org

[Agfar]

I too was diagnosed at age 55. That was in 2009, 14 years ago and am untreated for my CLL. This site is really helpful.

[claree_ford]

welcome to you. There has been loads of good advice. First of all don’t worry about worrying. You can’t help but worry so don’t beat yourself up about it. I can’t speak for anyone but myself but I went into a flat spin for several weeks/months, then, when nothing really happened and kept on not happening I mainly forget about it. I get a bit edgy around blood test and checkup time and then relax again. At one point they wanted me to go a year between checkups and I got bent out of shape at about six months and insisted on a blood test ...

In The UK they mostly don’t test for mutated status until treatment is near. It can change over time and is mainly relevant to which of the many very effective treatments will be best for you. Apart from the prodding for lymph nodes and enlarged spleen you will probably be asked about fatigue (different from needing an afternoon nap) and night sweats (very different from feeling a bit hot and sweaty).

Good luck to you and be as well as you can be. Clare

[Bankiedonnie67 in reply to claree_ford]

Many thanks Clare for sharing that info and advice,will do my best not to worry,thanks again Donnie.

[kitchengardener2]

Well firstly welcome to the group, none of us really wanted to join but now you are here, you are in the best possible place. Our administration team and long term members will try their best to answer your questions. I feel that I probably had CLL long before it was diagnosed. I had had drenching night sweats for some time but because I wasn't ill, I didn't seek medical advice. I thought that my 'hot and tropical moments ' were the tail end of menopause. I had a stressful job, bred and showed dogs, ran training classes and a home in addition to studying for a part degree so, yes, I was tired but again ignored it. In early 2018 I had travel vaccinations which triggered raised lymph nodes in my neck. Eventually in late 2018, I was diagnosed. I had three years watch and wait before starting treatment with Acalabrutinib. I am now delighted that my consultant now tells me that I have partial remission with my bloods in normal ranges.

Have you been allocated a Clinical Nurse Specialist (CNS) ? If not, ask if you can have one, these wonderful nurses are able to answer some questions and will research others. The thing to remember is that with CLL, you will probably be able to live fairly normally, many of us were told that if we must have cancer ... this is the best to have. You may not need treatment ever or maybe not for many years.

I would point you in the direction of Leukaemia Care, Blood Cancer UK and of course CLLSA.

You must be aware that you may be more vulnerable to infections and should keep away from people with coughs and colds. I was told to have any vaccinations that I was offered. I had my 7th covid jab this morning. Ask at your GP's for shingles (Shingrix) and Pneumonia plus annual flu jabs. Be aware that you shouldn't have live vaccines and be wary of travel vaccines. We were world travellers but now stay in Europe. Travel insurance will cost a little more, companies such as AllClear and Staysure have covered me with an annual European policy. It's extra for cruise cover which we may add later.

Yes this is a stock comment but ... please try not to worry. Here on HealthUnlocked, you are amongst friends.

[Bankiedonnie67 in reply to kitchengardener2]

Many thanks for your input! will take on board your excellent advice regarding CNS and the jags for shingles etc..Many thanks! Donnie.

[Westie11-]

Hi you have already had many good replies but as a UK resident I thought I would comment too. I was diagnosed 11yrs ago and only started treatment 6 months ago. If you have been diagnosed early you could also go that long but will depend in your blood count. In the begining I would have a blood test every 6 months and the result would be by telephone consultation so no need to go back to hospital. I never told anyone what I had just said I had a problem with my blood jt was only when I needed to start treatment I told my children. 11yrs on the world is different now with Covid and we have to be extra careful as our immune system is very low. Try not to worry as I am sure you have a long way to go before treatment.

[Bankiedonnie67 in reply to Westie11-]

Many thanks for that Westie11- feeling lot more positive now that i am engaging with other CLL members,fingers crossed!

[Fran57]

Hello and welcome to this amazing site, with some wonderfully supportive, knowledgeable people here.

I would have been completely lost without them when my husband was diagnosed 10 years ago ( I can hardly believe that!!)

You will have loads of doubts and questions, and “everyone is different” is a phrase you will hear a lot, but try to relax a little, once you get over the shock, and ask lots of questions … there is always someone here who has the answer!

Take care and, once again, welcome !

Fran 🤗