Newly Diagnosed with CLL - should I be worried if B symptoms have already started?

Hi all, I was diagnosed just a few months back and at that time did not believe I had any B Symptoms of CLL. However, I've noticed that I have two symmetrical bumps, either side, towards the back of my neck and I'm unsure whether these are swollen lymph nodes. They're not painful and you cannot see them, but you can feel them. I'm not sure if they've always been there, if they've been there ages or if they have just sprung up. I've never noticed any swollen lymph nodes ever before but have never paid attention before. If they sound like swollen lymph nodes, should I be concerned that they've swollen so soon into my diagnosis? Have many people had swollen lymph nodes and been on watch and wait for a very long time?

I've managed to push my CLL specialist appointments back to every six months because I find it really stressful going in, so don't want to go in about this before my next appointment in July. I want to concentrate on my five month old baby during the rest of my maternity leave and try to ignore all of this as much as possible.

24 Replies

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  • SuzeJc ,

    You may want to lock your post to community members to get more responses.

    I can understand your feeling stressed over feeling the bumps, and yes, they could be lymph nodes. Small ones are not really noticeable to sight, and don't hurt. Yours are probably very small and time will tell if they grow or not. Could be that they are the result of some related germ fighting in your body that is not the CLL at all. Unless they start to grow noticeably, I don't think your doctor will be too concerned. That said, it can't hurt to call and ask, and you should, if only for peace of mind. Then do as you prefer and concentrate on your life, your child and go enjoy both.

    I'm not sure about the experiences others have had with small nodes and the duration of W&W. Hopefully you'll get some other responses on that.

    Wishing you well!

  • Thank you for replying . I've just had a look at how to lock my post to community members and cannot work out how to do it! Wishing you well too!

  • B- symptoms don't include swollen lymph nodes - many of us have these and yet can go for many, many years without needing treatment. B-symptoms are:

    * Fever (i.e., temperature >38°C [>100.4°F]) for 3 consecutive days

    * Weight loss without trying, exceeding 10% of body weight in 6 months

    * Drenching night sweats

    Further to shoshanaz's excellent answer, you are probably just more aware now of any swollen nodes (plus they feel larger than they actually are - more so when we can't actually see them! They may well resolve after being temporarily swollen to deal with an infection, which you may not be aware of.

    Enjoy the rest of your maternity leave - perhaps checking with your doctor for peace of mind.

    Neil

  • Thank you for clarifying and for your response, as always, Neil. I had a cold a week ago and have started waking up with a mild sore throat every morning. It's becoming a bit too frequent so I might need to ask about that also or go to the dentist first to get my wisdom teeth checked. I hope they go down.

    Thanks Neil. Enjoy your weekend.

    Suzanna

  • Hi Suzejc,

    I can't really add much more information than AussieNeil and shoshanaz as they hit the nail on the head, but I can add something, hopefully as a reassurance. I was diagnosed over 8 years ago with a relatively low white cell count of 12. Although I spent the next 7 and a half years on clinical watch and wait I was personally on 'watch and hunt' for the lymph nodes. It was very stressful and I continually assessed sizes and shapes of lumps and bumps. CLL W&W is as much (maybe more of ) an emotional journey as it is physical and it can be very draining if you don't manage to put in strategies to cope - especially if you are naturally a worrier like I was/am. I can also understand that it is probably more so for you, having to cope with this and a young baby.

    If I had that W&W time again I would tell myself that I need not worry about what I cannot control and, apart from the inconvenience of 6 monthly blood tests and a poke around from my consultant, it will not affect my quality of life. Easier said than done, I know, but it is true. I have just finished 6 months of FCR. The reason to start treatment was based mostly on bloods and enlarged spleen, but my nodes were slowly growing for a long time with no real effect on me. personally. I have been told that I can enjoy several years ( My consultant wouldn't tie himself down to a timescale, but could be a good long time) of remission. There was a chap on one of the CLLSA conference videos asking a question who opened with, ' I had FCR 15 years ago and I am still in remission' so that is my benchmark.

    I hope you can find some resolve and reassurance from these posts and maybe if you seek help from some specialist counselling services ( Macmillan are good if you are in the UK) they may be able to put things in perspective.

    I wish you a happy and long W&W and enjoyment being a parent. After that? treatments work and are improving all the time :-)

  • Thank you Rich. I hope your FCR treatment went well and you are in remission for a very long time. I will try to take your advice onboard and stop hunting for nodes etc. I agree that there's no point in worrying about what you can't control or what might not happen for a very long time. Easier said than done to put it into practice though! 😊

  • There are some wise words of advice in your post. Being diagnosed with CLL is a given. No point in fretting about it. It will progress in its own way and its own time and there's not a lot anyone can do about it. So crack on with life. Eat well, exercise and generally look after yourself, just as you would if you didn't have CLL. Eventually treatment may be needed, and who knows, by tomorrow there may be a complete cure (we all hope....).

    Can't remember the source of this quote, which goes something like 'Worry is like sitting in a rocking chair. It gives you something to do, but doesn't actually get you anywhere.'

  • I also have a 4 month baby , was diagnosed while pregnant from routine bloods and am in watch and wait ! I go through waves of worry but then days I don't think about it much . I feel much the way you do . The other day I just happened to run my hand across my collarbone and felt two pea sizes bumps as well. I don't know if I've had swollen nodes there before with illness or if they were new and bc of my CLL. Fortunately my doctor has a patient portal where we can email questions and they respond rather quickly . My doctor's calmness often puts my mind at ease ( for the time being) . So perhaps a phone call to your doctor may give you some reassurance . As far as lymph nodes he said they can often wax and wane with illness so not to worry and just keep an eye on them. I find my worry is more thinking I have other things ( i.e. Cancers) besides CLL. But I try to remember whatever tomorrow brings I will handle just as I am handling this . It's so hard with the baby and breastfeeding and hormones as well because sometimes I wonder if what I am feeling is a result of those hormones . These boards help me tremendously especially finding others in similar situations and listening to the positivity of others on the days when it's hard to muster up myself .

  • Thank you for your reply and congratulations on your baby! I'm sorry you've also been put in a situation of coming to terms with this, amongst hormones and overwhelming worry about your baby when it should just be a happy time. I'm much like you now. Generally, I get on

  • ... With things and feel emotionally strong, other days I panick about all sorts of things. I just need to work on being able to cope with going to my haemotologists - every time I go things seem to get so much worse so I'm always far too emotional before and after these appointments and get upset at needing to take my baby to things like that. I do keep in mind that you never know what other people are going though... Everyone in my baby groups appear as though lack of sleep is their biggest concern, but I know that I appear the same way to them also! 😊 I want to let you know that I've had contact with a few ladies (I was added to a Facebook group just for women) who have had several pregnancies with CLL, just in case you were wondering about that. Please keep in touch and enjoy your time with your little one x

  • Hi SUZEJc

    This is my first time posting today, im also in my thirties and am currenly having treatment, im sorry to hear you got diagnosed when you did as its supposed to be a happy time for you, i had never heard of cll prior to getting diagnosed and thought it was the end of the road.

    Dont worry to much about your lymph nodes as if you needed immediate treatment they would have advised you at your last appointment. I had it really bad for years before getting diagnosed last November, it is scary even going to appointments to begin with, you always expect the worse but try not to worry that much and focus on life and your baby, im currently finishing my last chemo next week and even going thru that wasnt as bad as i thought, i dont know if this applies to everyone with cll but ive noticed im intollerant to a lot of foods and eating them makes glands in my neck swell and around the body, if your having problems such as any pain or fatigue try having an intollerance tests and seeing a dietician as this may help in a lot of ways.

    Hope all goes well and im here if you need any advice or a chat

  • Hi Lewis, thanks for your reply and sorry to hear that you're in the same club. Well done on almost completing your treatment- good to hear it wasn't too bad and I hope it is very effective for you. Interestingly I'm a coeliac and also can't tolerate cow's milk protein so I'm cutting out all dairy for six months to see if it makes a difference. Best of luck to you.

  • Hi SuzeJc, sorry my names actually Stuart should change it really, thanks for he reply. I think it's interesting you also have coeliac and many others on here from what I have read suffer with food intolerances, I haven't had a test but I have stopped dairy also but do have the odd plate of scrambled egg, milk is definitely off the list, ive got an appointment with my haematologist Monday so am going to see if he can refer me for a blood test to eliminate certain foods or possibly diagnose some other issue, im currently eating gluten free and feeling a bit better but there are still changes i need to make, did you notice you felt better once you were diagnosed and changed your diet?

    I have done a bit of research into foods and the body and found that 75% of the immune system is the stomach and eating things were allergic or intolerant to can cause long term problems or illnesses, there are a few things ive tried which may help you with your cold and sore throat I noticed you were suffering with in one of your posts, I'm just about to try matcha green tea which is supposedly the best health wise there is, also the best thing for your sore throat and cold is manuka honey but it must be umf, you can get it from Holland and Barrett, a small spoon of that works with immediate effect, i also read grapes with seeds are very effective in killing Leukemia cells but isnt proven but they are also very difficult to get hold of.

    Have a look into a condition called leaky gut syndrome and how to heal yourself, sorry for the information overload.

  • Sorry for the delay. I hope your haematology appointment went well. I was really poorly before being diagnosed as a coeliac- really tired, stomach issues and pains in my bones (my autoimmune antibodies were attacking my bones as well as my intestines when I ate gluten. My gp thought this was auto immune arthritis before further tests). The stomach issues settled fast and everything else gradually got better. My intestine repaired well too.

    The sore throats are strange. They keep coming and going but I k get them only at night. Thank you for the matcha tea tip.

    Yes I looked into leaky gut syndrome when a friend mentioned it. I'd never heard of it before.

    Best wishes

  • Hi SuzeJc

    Hope your well, how's the little one? yes what you had sounds very similar to what I have and have experienced, I've had bone and muscle pains and stomach problems for years and my Gp kept saying it was stress. I spoke with my haematologist this week and he told me to go back to my gp in order to get intolerance tested.

    Try not to worry to much about this cll as if your haematologist told you you might not need treating it hopefully means you've got good markers with this, I'm still coming to terms with it myself, I've just finished my last chemo this week and results are looking good but need to continue taking the trial tablets I'm on, if you ever do need treatment which hopefully you don't do your own research and don't jump into any treatments a haematologist offers as they don't always have your best interests at heart, I'm on a trial called flair and was lucky enough to get the good side which was Rituximab/ibrutinib, the two treatments I'm taking are targeted therapy which means it only targets the cancer cells and doesn't further damage your body, I've done a bit of research and hopefully in the not so distant future this disease will be treated with a tablet once a day like diabetes, I think stress plays a big role in this so try to avoid any of possible, I'm not an expert but I've learnt a lot since being diagnosed and treated,keep in touch and best of luck to you to.

  • Sorry in response to your sore throat issue,I use to suffer with it, do you have the heating on at home a lot in the evening, try drinking more water, have you tried the umf manuka honey, it could possible be a bacterial infection which the honey might help clear up, hope that helps.

  • Hi, my little one is well thank you. Teething at the moment! :) It's good your specialist is focused on intollerances. Coeliac disease can be picked up by a blood test but needs to be confirmed by an endoscopy. I've had two lactose intollerance tests which were negative because I have a mild intollerance to cow's milk protein, not lactose, but this is something no dietician, GP or gastroenterologist I've met has been particularly interested in hence why I'd continued to cook with small amounts. Yet they would have been concerned if it was a lactose intollerance. Unfortunately, the consultant I saw last said that due to my age it's highly unlikely I wont need treatment and he indicated that what I was told originally by a different consultant wasn't correct. The appointment felt like a bit of a slap in the face. He was a bit blunt as well as taking away the positive things I was focussing on that the previous consultant said (all from the same blood results as I didn have repeat tests). I haven't had any markers checked yet. I agree with you about stress. Easier said than done. Thank you re the honey - I've just started using it. I'm pleased to hear you got onto the flair trial and the good arm of this. I hope it's still going well for you and you enjoyed the Easter weekend 😊

  • Hi Suze, hope you and the family are well. Sorry to hear your consultant has given you bad news, sounds like you've already been thru the mill with all those previous tests, to be fair I haven't met a GP or Consultant who has really been interested with the exclusion of one male nurse who is part of the team I'm seeing, I probably had this for about 15 years prior to diagnoses and every time I went to my GP he kept telling me it was stress and made me feel like I was wasting his time, I tried to ignore it and it wasn't until I was on deaths door with anemia I made him reluctantly give me a blood test and they picked it up and I had to go straight to Worcester Hospital for blood transfusions and start treatment. I do think food and stress played a big part In this for me, it's scary being diagnosed with this and I remember when I got told I thought I was finished, it must be really hard on you having to look after a baby, they will have done a test on you called a fish test which I have no idea what that stands for but this test shows markers that you have in this illness, I had to ask a few times for it and they were reluctant to give me a copy but I eventually got one. What you need to ask next time you go in if it helps is if your mutated or unmutated are you 17p or 11q do you have any bad markers, don't worry to much if you do as they are coming on leaps and bounds with this illness and there are lots of trials and new drugs coming out all the time to combat it, you just need to look after yourself and try to eliminate any stresses, easy said than done I know, not to say it in a selfish way but it's nice to have someone around my own age to talk with as when I was first diagnosed I was like gold to them as they said it was extremely rare to have this at our age, the consultant I'm under has referred me back to my GP to discuss intolerance testing but I've found a private place near home that does all kinds of test including the new DNA health testing which sounds good, I'll let you know if I can find any other things that could possible help, when's your next appointment with your consultant

  • Hi, I hope you've enjoyed the weekend! It's more one consultant said it was MBL and in years and years it could become CLL; another said he thought it was now CLL but pregnancy could have skewed my bloods but I might not ever need treatment; the last said he thought it was CLL since 2015 and it's likely I will need treatment due to my age! Not sure how you can get so much variation between consultants who all work within the same department! They haven't run any fish testing. I was asked at the last appointment if I wanted this and I said not for the time being. I would rather live in hope I have a less aggressive version of CLL. What were the reasons for you needing treatment? I have the same gut feel about stress making it worse and diet. Though randomly someone who is two years younger than me and grew up a few houses away also has CLL. I actually know of two people with it through normal life, and one with SLL, which is a bit random. I'm not going back to my consultant until July and I'm dreading it as it will be my first test after things will have settled after my pregnancy. I hope things go well with your intollerance testing. If you think you might be a coeliac then make sure you get followed up with gastroenterology.

  • Hi Suze, yes just relaxed the weekend thanks how about you, I didn't ask before is it a little girl or boy you have and how's the teething going, amazing how all three of your consultants can come up with three different conclusions, doesn't inspire much confidents. I would ask your consultant or gp to refer you to a cll specialist for your further appointments, I wish I had to be honest but I have been lucky getting on this part of the flair trial I'm on, to be fair my consultant doesn't really seem interested which isn't very reassuring when your worried, they just give you a stern look when you go in and don't answer any questions, your going to be fine either way. I got diagnosed after I went thru a really stressful time plus now I realise eating the wrong foods which I think also contributed to this, I had anemia which came on slowly over a number of years but then really fast last year to the point I couldn't walk, they diagnosed me in late September last year and I didn't have any time to think I was told I needed immediate treatment and blood transfusions, a few minor side effects a side my results are looking good now but I still dread going into my consultant as you always expect the worse, I would say to get your fish results as at least you know and can do your research, it's good to live in hope but it'll always be in the back of your mind, either way bad or good your going to be fine there are plenty of new treatments coming out now and I don't think they are many years of finding a one a day pill to treat it which is hopefully what the Ibrutinib tablet I'm taking is being tested as, cll is very complex as there are different markers and factors involved which are different with everyone so I'd imagine in the future due to this they will tailor different treatments for different people, I'm sure you going to be fine just concentrate on things that make you laugh and your baby and cutting out anything that could be bad for you including sugar, I'm always here if you need a chat

  • It was really lovely thanks we went out on dat trips with our little one - a little boy! The last consultant was a CLL specialist, the one before a lymphoma specialist and I'm not sure about the first. They don't automatically do fish testing where I am unless people are nearing treatment. I was offered it due to my age as my consultant said it may determine when I want to do certain things. im sorry you were so poorly before treatment started. Do you have favourable markers? I hope you're f loads better now. Yes, my little one is such a positive distraction. He keeps me busy doing lots of things with him, which I love.

  • That sounds nice day trips are always good, making memories and taking your mind off things, I did a few weekends away last year when I first started treatment and it really helped me, it sounds like your far off treatment if you need it at all which is good news if a specialist told you that. I think if I'd possible avoided a lot of stress and realised a lot of issues I had were down to dietary intolerances I may have not needed treatment yet. I don't know a lot about markers but I was told I was good to intermediate the latter I'm presuming was due to me needing treatment straight away, I know I'm unmutated which isn't great but isn't bad, that means if I'd been treated with straight chemotherapy, besides it weakening me for life I'd need treatment again very soon after, as far as I know I don't have any of the other bad markers, I'd probably had this for about 10 - 15 years prior to being diagnosed but I'm glad in a way it took until now for them to pick it up as there weren't the treatments available back then there are today, your little man sounds like bags of fun and will keep you on your toes and entertained, how do you feel apart from the worry of being diagnosed?

  • Sorry for the delay. I just needed to try to switch off from all the CLL stuff for a while (unfortunately not fully possible). How are you getting on with your treatment? I hope it's still going well. Physically I feel great - the nodes on my neck went down, I'm now teaching three high impact Zumba classes per week and don't feel fatigued with this and it's still only 8 months since I had my baby. I'm sleepy tired a lot but so it my other half and it's not surprising when we don't get as much sleep now! 😊 my next appointment is looming, it's Tuesday and it would have been six months since my last bloods so I'm so anxious. I've requested to have my B12, immunoglobulins etc checked (I cann believe I had to chase this and only found out about things like that through this site!). I hope all is well withey you and you're enjoying the weekend

  • How did you get on

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