I was diagnosed in late November of 2014. On w&w with appointments every 3 months until my last checkup in October 2015 where they 'signed me off' for 6 months after a FISH prognostic showed no 'bad' markers.
So far so good, apart from the lymph nodes in my neck and jaw. They have been swollen pretty much since my very first needle biopsy and then a full surgical excision from my neck (which resulted in my diagnosis as the needle biopsy was inconclusive).
The swelling has remained pretty static (maybe growing, but very slowly), but since a nasty cold last week, that pushed them into overdrive, they have become much more pronounced and pretty uncomfortable. I am now getting over the cold, but the lymph nodes don't seem to be shrinking accordingly. I had heard that this could happen, where lymphocytes flood to an area of infection, including the cancerous ones, then decide to stick around afterwards.
I have no B symptoms, my blood results were still pretty low last time I was checked, and I feel pretty good in myself (I took up regular cycling after my diagnosis and I'm now leaner and fitter than I've been since I was in my 20's - I am now 47!).
I just wanted to know if anyone out there has experienced any treatment for reducing the lymph node burden without going to full Chemo? I have read that steroids (prednisone?) have the ability to flush the bad cells out, but is it the case that they just flood back in after the treatment finishes? Maybe even flood back in larger quantities and cause more swelling?
I'm back to see my specialist mid April, and I'm so worried that I will be pushed to treatment just because of the lymph node swelling! At 47, I don't really want to use up one of my 'treatment bullets' so early on (although a part of me want's the treatment just to get a few years remission and get on with life - maybe with the hope that I'm one of the lucky few for which FCR provides a cure).
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jasonfox
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Lymph nodes vary and go up and down particularly if you have had an infection!
You may find they return to whatever is normal for you.
You don't say what size the nodes are?
It looks from your post that everything else is pretty stable which is good news .
The problem with large nodes in the neck is that they press on any arteries and blood vessels and this can cause other problems. If these become serious it may be that treatment will be considered.
You are obviously concerned so if I was in your position I would make a call to my consultant or specialist nurse to discuss the concerns you have. Remember they understand not only the condition but also the psychological situation we all face.
No reason to continue worrying get on the blower and check it out!
Apart from blood test results my only CLL symptom has been large lymph nodes. I have done 3 courses of chlorambucil to debulk them. Its an old chemo, pretty mild. It halves my wbc and makes my nodes shrink. I look at it as a delaying tactic from "real" treatment.
The consensus, at least for now, seems to be to not partially treat, but to hit the CLL hard if/when you need treatment. I would not want to knock out a few cells but give the ones left behind a chance to become more resistant to treatments in the future.
Your nodes may well resolve in a few more weeks, so be patient a bit longer and then discuss your options with your specialist. I agree with pkenn though; the expert consensus is to hit the CLL hard with an effective treatment, rather than have a gentle go at it and waste some of the value of your first treatment and risk ending up with a shorter remission. I suspect that's why rituximab monotherapy is rarely if ever used by CLL specialists.
It is possible to selectively shrink nodes with radiation therapy, but they'd need to be a threat to your health for that to be offered I expect. You could try a high dose of green tea capsules (2 to 4 grams of the active ingredient EGCG daily), which a Mayo clinic trial found to reduce node size in many of those on the phase II trial. There's plenty of discussion on that elsewhere here if you search for 'cllsupport green tea EGCG'.
I am feeling a bit better now and am told that my neck swelling has reduced a bit.
It's so easy to get into a downward spiral with this horrible disease, worrying that things are progressing more rapidly than they actually are. It's turned me into a hypochondriac!
I fully understand the advice to not waste a treatment just de-bulking nodes, and however stressful w&w is, I would still like to be on it for as long as possible.
I take a green tea capsule every morning and have 3 - 4 cups of green tea a day, so hopefully that's helping a bit
None of my nodes are bigger than 1cm normally Cammie, which I know isn't really big at all, although there are quite a few of them. I've suffered from body dysmorphia pretty much all my life, and I'm told that when people first meet me they don't even notice my neck and jaw swelling (although I'm sure my beard helps), but when I can no longer avoid looking in a mirror for whatever reason, I see a hamster hoarding food!
Jasonfox, I was diagnosed 5 years ago (age 48 at the time) and have had 2 rounds of Rituxan treatments since then. My issue is much the same in that the nodes in the neck contract my throat and it makes it hard to swallow. Eyes have been swollen for 3 years now. Don't know if it is the treatments or affects of the Lymphoma. The treatments are not bad and very little side affects. I see minimal results but results no less. I will try the green tea suggested here. Haven't done that one yet. Good Luck.
Jason, Also, I did have a Prednisone treatment, with some temporary results, but you cannot stay on Pred. I feel your pain on the using up the bullets. After 2 rounds of Rituxan then Chemo is next and I will try to hold out as long as possible. Last round of Rituzan was in the fall and I'm hoping to get a couple years out of that. It seems that the watch and wait treatment is the standard here. Lots of stuff going on out there and I'm hoping blood replacement or something like that can provide a cure. Again Good Luck!
I know this is an old post, but I am just now interested in prednisone. Can you tell me your dosage and how soon it shrank your lymph nodes. I am MRD negative, but I have a lymph node mass I need to shrink.
I'm just interested as to what happened about your lymph nodes? I've had the same issue just recently. I had some kind of virus (I think???) which caused the nodes on either side of my jaw to swell up and become really tender for a while. The tenderness and symptoms from the virus have all gone away but after almost 2 months, the nodes are still there. I'm going back to the doctor shortly but its left me pretty worried. I had a blood test just recently and it came back within the range that it normally fluctuates within. Apart from the nodes, I'm as fit as a fiddle with no other symptoms.
My consultant explained that the lymph nodes were just part of my CLL being 'active' and there was worry that another virus or infection could close off my airways! I was also losing weight quite rapidly.
Long story short, I ended up having FCR treatment. I have just finished cycle 6 of 6, and feel better than I have in a long time!
It's true with chronic diseases that you don't realise how sick you are until you have treatment.
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