B Symptoms

tgyphilly

Hi -- I am curious if anyone has had Hodgkin's lymphoma-related "B symptoms" that fall outside of the normal list. The typical lineup being:

• Painless swelling of lymph nodes in your neck, armpits or groin.
• Persistent fatigue.
• Fever.
• Night sweats.
• Unexplained weight loss.
• Severe itching.
• Increased sensitivity to the effects of alcohol or pain in your lymph nodes after drinking.

Has anyone had OTHER symptoms caused by their lymphoma, either prior to initial diagnosis or as a precursor to a recurrence? If so, what were those other symptoms?

Thanks for any feedback you can provide.

po18guy

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

Rocquie

Hi tgphilly, I had all the symptoms you listed except for itching and alcohol problems. In addition to your list, I had shortness of breath, cough, anemia, spleen enlargement which caused significant upper abdominal pain, pleural effusion, visual disturbances, hyponatremia, and headaches.

Cheers,

Rocquie

po18guy

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.

ShadyGuy

For me it was splenomegaly, skin eruptions resembling psoriasis, constant fatigue, occasional night sweats. On relapse it was splenomegaly, itching, fatigue and muscle and joint pain.

tgyphilly

Thanks all. My current status is NED through a few scans over one year. Diagnosed in 1996 (ABVD) -- recurrence in 2018 (Rituxan) -- recurrence in 2020 (Bendamustine + Rituxan). I'm again having same symptoms as I had prior to the 2020 recurrence (some B symptoms, plus other non-descript illness feeling/malaise), but oncologist doesn't see the connection between my symptoms and possible recurrence, because my blood work is normal and I'm not showing ALL of the B symptoms. But, my blood work is always normal... I will have perfect blood but a 3 cm node and an 8.5 SUV on my PET.

I posted here about this a few years back. I think there's a disconnect between what hematologists know about lymphoma symptoms and the range of symptoms that actually occur among patients. I wish there was less rigidity about what is/is not a possible symptom of lymphoma. My experience is that doctors will rule out any symptoms that don't match up exactly with their list.

Max Former Hodgkins Stage 3

https://csn.cancer.org/discussion/comment/1693322#Comment_1693322

My post above 'posted' without any provision to edit it, so this is my continuation.... When I was first diagnosed, my CBCs (which I still have copies of) were NORMAL. Today, my onc/hematologist (who is very highly-regarded, with great credentials) follows the PTGC via touch exams, my report regarding B-symptoms, and CBC/Metabolic Profile, which remain normal currently. I have resigned myself to just going along, since worry would be of no obvious benefit. Since you have a confirmed relapse, I would recommend that you encourage the doctor to follow up as closely as he or she is willing. This is I suppose what is called 'reasonable care,' and is as much as most oncologists are willing to provide. As someone above mentioned, lymphoma is basically a form of autoimmune disease, and hence there is constant overlap in how the two present themselves to the patient. As Bob Dylan sang in Tangled up in Blue, 'the only thing I knew how ta do was ta keep on keepin on....' Continue to keep on,

max

Max Former Hodgkins Stage 3

https://csn.cancer.org/discussion/comment/1693322#Comment_1693322

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.

Max Former Hodgkins Stage 3

An entire two paragraphs from me 'went away.' If they do not reappear, I will re-write them later

po18guy

https://csn.cancer.org/discussion/comment/1693328#Comment_1693328

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.

Burni

i had , swelling of lymph nodes in my spleen,abdomen wich would swell and unswell at any given time. I had swollen ankles, and Ive never heard anyone say that.I had a spot on my forhead that grew larger and larger.I actually changed my hair to cover it.It was all related to myDLBC .Symptoms and outcomes are like finger prints they are all different from each other. Good Luck Burni

Pdejong4

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.

ShadyGuy

Have you tried Labna eaten with warm pita? I have had an aversion to bovine mammary secretions in most forms for most of my life. Even as a small child I hated milk and refused to drink it. I just didn’t like the taste of stuff. I liked ice cream but it gave me gas. After chemo not only did I not like dairy but it but it also terribly upset my digestive system. I do eat some cheeses and labna which is a kefir cheese. Just a thought but you might give labna a try. Its an excellent source of protein and probiotics with little or no lactose. We stir it to make it fluffy, spread it on a plate, drizzle with olive oil and sprinkle with chopped fresh mint. We sometimes add a little cayenne or Tony Chachere. Cut the pita in wedges and dip like chip and dip. Definitely a finger food. We love it.

I hope things improve for you soon.

leiker_shop

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.

michaelhbrown66

Oddly I had NONE of the symptoms listed, I had pinching stomach pain, knee pain, and what felt like a pulled muscle in my back. I thought I had an ulcer and was in PT for the back and knee when my blood tests came back wonky. The alcohol one is interesting to me, hadn't seen that before, my scans showed I'd been living with one kidney for 55 years and never knew it, and I drank alcohol on a regular basis with no abnormal side effects. Was originally misdiagnosed as peritoneal and given 12 months. Biopsies showed Diffuse Large B-Cell Lymphoma, and I went directly into R-CHOP, finished round 6 yesterday.

SCTridash

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