It’s been a long time since I posted... was a conscious decision to try and get on with things and not think about my CLL (am a big over thinker) but I missed you all so here I am!
Quick recap - I was diagnosed 3 years ago aged 37, stage 0, lymphocyte count 7... since then it’s crept up a little, my white cell count and lymphocyte count are in the 20’s which I am aware is still low for CLL and I feel fine. Tired but that could be the busy job, stressed husband and small children...! Still watch and wait.
However in recent weeks I’ve noticed lumps in my neck which I believe are swollen lymph nodes. They’re not sore at all but are clearly visible.
I’m not due to see my haematologist again until April - do I need to call her and mention these lumps sooner, do you think?
I am a panicker and I am panicking, but my head is telling me this probably doesn’t mean a whole lot in that lumps alone most likely don’t make me ready for treatment yet so probably nothing will change... (self diagnosing much?!?)
Would be grateful for any thoughts from you experienced balanced fabulous people!!! Huge thanks!!
Also apologies as no doubt this has been covered before so sorry for going over old ground...
Best wishes everyone and thanks in advance for reading,
Firefly x
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Firefly14
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Unless you have some economic constraints, a quick trip to your haematologist may be what you need to calm your nerves. No need for undue stress and worry.
Hi firefly. I'm relatively new to this journey like you (diagnosed 2 years ago) and I'm still watching and waiting, so I might not have the best advice.
If it were me, I would like to speak to somebody about new swollen lymph nodes. Do you have access to a clinical nurse specialist that could advise you? I think your haematologist would probably like to check for any swollen nodes elsewhere and maybe do an early set of bloods. It could be an infection, but I would have thought you would have a sore throat and feel more symptoms if it was an infection.
From reading other posters on here, I don't think it's unusual to have nodes swell and then subside. But I think if you leave it, you'll just be worried about it anyway!
At my appointments, I'm always asked about swollen nodes - so I think it would be a good idea to get them checked. Let us know how you get on. I hope it will just be a minor blip on your journey.
Nodes do go up and down as the cll cells hide in the lymph glands little blighters!
You may have been asked about nodes when visiting your medics and they look at this alongside the blood counts to get a better idea of exactly what is going on.
It’s worth discussing this prior to your appointment though as it is a further symptom of our condition however don’t worry too much as it’s a common symptom in progression.
You could see them go down again shortly as the cells return to the blood stream buts it’s worth checking
Firefly14: Alerting your Dr. about a change in your medical condition has nothing to do with 'panicking.' To do so is to exercise good common sense. It's what your Dr expects you to do from the 'bargain' you made with her when you signed on as her patient. Her obligation is to tell you what she knows; and your obligation is to share what you see, feel, and observe. Neither of you two can function optimally until you each do your part.
Almost certainly you'll be invited to come earlier than April and most likely will be sent away smiling after a consult and an explanation ~~ but it's FAR BETTER to hear the mantra 'No need to worry' than it is to delay for 14-weeks and then be told ... "we needed you here months ago when you first noticed these changes."
If you call tomorrow then you'll sleep better in the interim, too.
I think a lot of doctors don’t think of swollen lymph nodes as such a big deal when assessing health, but for us patients, they’re a REALLY big deal. We see them when we look in the mirror. (If you’re a man, you shave over them.) Your friends, coworkers, and family members can see them. They’re likely either thinking you’re getting fat, and you’re getting more sick (if they’re in the know). Especially at 37, you want don’t want CLL to be the primary thing in your life. You don’t want it in the top 5 if you can avoid it!
In 2011, I went through 6 months of FCR (which immediately shrunk down my swollen lymph nodes in my neck), then after a relapse, another 6 months of FCR (which again immediately shrunk them down). But then I relapsed again. This time my goal was to get Ibrutinib, but my blood had to reach certain numbers before my doctor would prescribe it. So I waited and waited as my neck bloated out more and more, until I hit the minimum numbers that allowed my doctor to justify a prescription. (I had to really push for it.). Ibrutinib quickly shrunk them down (except for one pesky lump that my be considered “scar tissue”). Of course, my blood has gone all wacko with Ibrutinib, but at least I feel I look like myself.
Any changes such as you have described are worth checking. In your situation I would contact the haemotologist and not wait until April. Having CLL is a worry to anyone but there is no reason to panic. Hopefully you have a good relationship with your doctors and able to approach them if you have any concerns. Good luck.
I think should consult for your satisfaction. Nodes could be due to some infection also. As it happened to me and nodes gradually reduced within two weeks. However, better to visit ur consultant. Wish you best
With CLL only you notice and feel the changes to your body. Whilst swollen nodes are visible other things may not be. A reassuring trip to your specialist and a set of bloods could put your mind more at ease. Stay positive and good luck. Im in Nottingham with a specialist CLL clinic. The hospital has a CLL nurse specialist with a direct number. She is there to put patients mind at ease. Indeed when i recently took ill and called she got me in with the consultant within 12 hours. Find out if your hospital provides a service like this.
Like AmericanRonin i too went through 6 months of FCR in 2010 and after the first treatment the nodes decreased dramatically. I am at a point where they are back and getting changes to my bloods which will lead to more treatment. I have a good relationship with my consultant and he is happy to see me anytime. Im sure yours would be too.
When a swollen lymph gland appeared in my armpit (after having my flu jab) I tried to see my GP. Big mistake, as I couldn't get an appointment until the following week, by which time it had gone back down. I have since found that's the gland which is triggered by any downturn in my health.
However, were that to have happened today (I've been on W&W for 10 years), I would phone my consultant's secretary to squeeze in an appointment. Worry ain't good for you. All the best, Joan
Really appreciate you sharing this, thanks! Also reassuring to hear you’ve been on W&W for ten years.. hoping I can be too. You’re right though, the worry can be damaging to our health can’t it!
Personally, I would want to have a piece of mind. To achieve this I would check in with your doctor and share this new information. The doctor can then have the opportunity to document your lymph node observation and your blood numbers. If all is going well the doctor may say come back in April or tell you to come back in 6 months...
I've had noticeable nodes over the past few months in my neck which have gone back down again and also under my arm. Like mentioned, above, the one under my arm reacted to the flu vaccination and seems to react to all sorts then go back down again. I might have had these years and never noticed before or they could be new. My consultant didn't seem concerned, saw me early and redid my bloods and checked them. Bloods were stable and he said my nodes under my arm were slightly raised but wasn't concerned in the slightest. They seem bigger to us. You should get them checked but i hope this makes you feel a bit better in the meantime .
I feel I need to reply even though I'm further down the road than you. I was diagnosed in 2012, but had 'signs' since 2002. I recently had a large lump appear virtually overnight and I was concerned. My specialist is so good about my emailing to her and gets back to me very quickly. I was going to be in California, so even thought she was booked, she squeezed me in. It is noticeable (I can see it) and she felt it and said 'lymph node'. Please whatever you do, don't panic in this disease, but always be aware of changes and get in touch with your doctor. There are so many new developments in the works for CLL/SLL, that by the time, or if the time comes that you need treatment, who knows what science will have come up with by then. Right now Ibrutinib is giving those that need it a gift of renewed hope. Come visit often. Always new posts about lymph nodes and remember there are no dumb questions. Someone will always reach out to you with an answer. My best. Carole
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