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High Lymphocytes, Low neutrophils and swollen lymph nodes for a year
I am just looking for guidance. This started about a year ago when I noticed a small bump behind my right ear. I went to the dermatologist thinking it was a skin thing and they said it seems like a lymph node no big deal. Throughout the lats year I began to develop recurring ear infections on that side but the doctor would always say it looks fine and is not infected. That side of my sinuses also has a hard time draining and usually feels clogged. I finally went to an ENT a couple months ago who stuck a camera and said everything is good but he can feel a few lymph nodes in my neck and clavicle area. Then during my routine checkup my GP noticed my lymphocytes were high and through asking other questions referred me to an oncologist. This conclusion came because I often am sick/have fevers, drenching night sweats on and off that look like i poured a bucked of water on my bed and weird skin issues rashes. My GP ordered further blood and i was negative for all autoimmune and my ANA, negative lyme, negative RA, negative sjorgens etc, I had positive very high levels of PAST ebv infection (nothing recent) and my ESR and CRP were very elevated but I know those are nonspecific markers. I went to the oncologist and they did a CT scan and my neck and clavicle armpit area had lymph nodes that were above normal range and bigger than 1CM short axis, I also had small nodule/mass in my nasal cavity and lymph nodes in my glands. They also did flow Cyomtry test which again was normal with 60% of my blood being lymphcytes, 6% being monocytes, 33% granulocytes and 1% CD45 Dim population gate. My Kappa Lambda is 1.7. Oncologist wasn't concerned and told me that whatever is going on isn't something to do with him and to essentially go elsewhere, no other suggestions where. My rashes and night sweats are only getting worse and my CBC has me bordering on anemic. I bruise incredibly easily and I am getting small skin lesions. Sometimes I am so itchy and just from itching for a few seconds I develop widespread petachie. I have lost about 15 pounds nothing major and I wasn't trying persay but I do take care of myself. Lastly my fatigue is off the charts. I get 8 hours of sleep per night and I still cannot get up. I ran a marathon a year ago and now I can barely run more than 3 miles. For reference I am a 25 Female who is 5'8 and 159 pounds (was 174). I understand this is not a malignant process but is this normal? I am starting to feel insane because in my bones I know something is wrong and I feel very dismissed, but also maybe I am overreacting.
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Thank you so much for your encouragement and honest answer. Today I go back to the oncologist. And tomorrow morning a colposcopy at Gyno.
The Oncologist and cancer team are waiting for my answer as to whether I will go ahead with chemo and radiotherapy. It is the anal cancer chemo and radio that scares me more than the groin. I wonder how I will survive going to the loo, (the pain, constipation or totally loose stools,) the cleanliness of handling the eruptions and skin blistering around the Anus from the radiotherapy, petrifies me. I know others have survived this but I have no nursing care at home to assist. And in all honesty my house and bedroom are cluttered from being bed ridden, not being able to do much in the last two years, because of the back injury and inability to walk or lift things. In saying all this I want to add that I have taken some encouragement from your experience, and I really wish you well for the next phase of your treatment.
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2 Reactions@susan38 A couple of thoughts: In Britain, the oncologists routinely offer colostomies prior to treatment so that the feces are routed through the bag rather than through the rectum and anus. I would imagine that this would reduce the pain in that area and would allow for more regular emptying of the colostomy bag rather than dashing to the loo when diarrhea hits.
Have you discussed your home situation with your oncology team? Might there be a nursing home where you could stay while being treated?
If you need to stay home, can you clear a path from the bed to the loo? Do you have friends who can help you get to your treatments, pick up groceries and meds? Get their commitment ahead of time, and if possible get someone to be "point man or woman", organizing things like ride schedules so you don't have to do that.
A nurse at the cancer center should be able to give you advice on how to stay clean, what items to buy in advance like a sitz bath, what kind of wipes, creams and ointments that will be gentle on your skin, etc.
Wishing you a gentle journey through this. Don't be afraid to ask for help. You'd be surprised who will step up.
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4 Reactions@virginiald
I had swollen lymph nodes, in front of right ear and below. Went to ears/nose/throat doctor - who thought it salivary stone- drink lots of water! CT scans showed nothing! But my primary doctor and I decided to order several blood tests-check everything which look like mumps. My spleen also was enlarged. More blood work showed false positive for mumps. I was then referred to oncologist who ordered biopsy that did confirm non-Hodgkins lymphoma. So your symptoms sound like mine- I still would be sucking on lemon drops waiting for glands to go down if my doctor didn’t run several more blood tests- I have since done immunotherapy infusions in August, and my glands and spleen have gone down. There is no cure for my type of lymphoma but it is a slow grower- good luck and push doctors for answers.
Leeann
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3 ReactionsWas CLL absolutely ruled out?
@916oceanlover I just had my FNA Wednesday and currently waiting on results. I’m glad you were able to get to the bottom of it and I wish you good health going forward!!!!
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1 Reaction@kaymash18 just had my FNA Wednesday so now just waiting.