B Symptoms

To help place this in context, what is your current status? Most recent vaccination/booster?

At second relapse, I had dry cough, 3/4 body rash - no itching, joint pain, swelling in arms and legs and a few others I forget. Lymphoma has classic symptoms, but since lymphoma is your immune system out of control, any number of different and unique symptoms can appear.

tgy,

I had all of the B-symptoms you listed, except for weight loss. The tendency is for any fevers to come-and-go, not remain constant, but of course this is also true of the itching, night sweats, etc. Only the severe fatigue was constant.

I also had organ pain, in the heart, due to compression from huge nodes, and in fact was first diagnosed due to what the E.R. thought was unstable angina. Later, I realized that difficulty swallowing was due to the same cause: compression of the esophagus by adjacent nodes. My first-ever diagnostic CT showed huge nodes all over the chest, axillaries, mesentery, and pelvic regions, although I had never 'felt' a node (via finger touch) anywhere, and even my surgeon and medical oncologist could not feel them, at any time -- even when using a CT to guide them.

I have been in NED for about ten years now, but began a scare with an autoimmune-lymphatic condition 18 months ago that looks exactly like advanced HL on CT. But, it is a benign condition known as 'P.T.G.C.' I have resumed serious itching and a burning sensation throughout the body after drinking even one beer. Severe fatigue never left me, even for a minute.

I have learned to copy longer texts before posting. Then if something freezes, I can simply paste it later.

tgyphilly, as to the symptoms of relapse, my initial symptoms were classic "B" symptoms. Second relapse brought entirely different symptoms - autoimmune symptoms - and so we pondered sarcoidosis and then just watched and waited for it to move. Our bodies are capable of producing only about 150 symptoms which have to cover over 68,000 illnesses and conditions. So, the sudden appearance of symptoms may be meaningless. Hematologists look for a unique combination of symptoms to warrant further investigation in many cases. However, if you have relapsed before, I would think your hematologist would be vigilant to identify or eliminate a second relapse, for your peace of mind and since each relapse can be exponentially more difficult to address.

I've lost the ability to digest dairy, even lactose free dairy. It goes right through me. I've had several rounds of chemo including bone marrow transplant and CAR-T. My problems became significantly worse after CAR-T. I also can't eat wheat bread anymore. The bloating and gas are intolerable. I'm using the FODMAP food list. Its working.

I just started a post about an unusual symptom. My 61 yr-old husband--just getting confirmation of subtype diagnosis this week--has experienced weight loss and what we call "head sweats": he sweats somewhat severely when eating just about anything, but only from the scalp. He doesn't have night sweats though, per se. I personally feel this IS his body's version of that B symptom, but I'd love to hear if anyone else has experienced this! So strange.

Sorry to hear of your symptoms tgyphilly. Would agree with some of the commentary above - it's the full combination of symptoms that matters. But also, I'm starting to wonder if some of the symptoms we all might experience are also symptoms of the treatments we're undergoing, not necessarily of underlying lymphoma/disease. Apologies for this lengthy reply but have some items to think about - in my case I've had piles of lymphoma with almost no symptoms, and lots of symptoms with no lymphoma after achieving complete remission/NED.

I finished BR treatment for FL (IIIA) last July and been on R-mab maintenance therapy since then. When I was diagnosed I had normal bloods, mid-range LDH, no "B" symptoms, and no real palpable nodes except for one swollen node in my neck several months earlier that lasted only 3 weeks and went away. Scans found 7 enlarged node clusters throughout the torso, with several nodes at 3 cm and SUVs of 7-8. We achieved NED after 3 months of treatment.

My LDH rose during my treatments, and since finishing BR it has risen further - I'm now well above normal range. I also began having night sweats AFTER starting treatments, then that paused after the BR, and a couple months into the maintenance mild-to-moderate night sweats have returned, once every few nights, now pretty regular - not the drenching type, but enough to become damp and uncomfortable. Also have the "pins and needles" feeling on the surface of the skin that some R-mab recipients report. I have also begun having periodic and mild hot flashes lately - sudden feeling of heating up on the forehead and upper back, which sometimes ends in a brief mild sweat. These are all with me 8 months after finishing BR. But no fever, and no infections yet.

We are doing another PET scan in a week or two to check if I'm still in remission. But the docs and I suspect these "symptoms" I'm having could be the result of treatments, and also the result of the cardio putting me on rosuvastatin at the start of my second maintenance R-mab. A quick read of some of the case research says that night sweats and heat flashes can be a side effect of R-mab in a minority of cases. The statin I was on gave me severe muscle pain after about 5-6 weeks, starting from the neck and down through the body. It got so bad that I felt very fatigued and weak and it impacted my ability to jog on the treadmill. I had to stop taking the statin - it took about 3 weeks for the fatigue effects to fully diminish. But the effects tricked my brain into thinking I was having lymphoma fatigue and I ended up with stress and anxiety (which may well be contributing to the hot flashes...).

At this point we think the rising LDH could be the result of my return to exercise after BR, as well as muscle inflammation caused by the statin I was taking. We suspect the hot flashes and night sweats could be an ongoing reaction to the R-mab (made worse by anxiety). Many folks apparently have these reactions early on and things improve over time. With me the effects have been delayed.

Would be curious to hear if others have discovered that some of these "symptoms" are actually reactions to the treatments. tgyphilly you may want to take this up with your docs as one line of discussion. Impt I think to have the doc conversations in the wider context of all these medications and treatments they throw at us. Google searches have very limited utility - they throw up positive correlations published in funded research. The research on absence of correlations doesn't get published, and many other things that are in fact correlated don't get funded (like the link between being physically active and LDH levels), so there's no research on them.

My other conclusion is get a scan and see what it tells you - that's what I'm gonna do, hopefully will settle the matter