High Lymphocytes, Low neutrophils and swollen lymph nodes for a year

Posted by sparkle @emmalevin, Oct 2 10:00am

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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Profile picture for susan38 @susan38

@virginiald hello,thanks for the info. Did you have radiotherapy and chemo. I’m being pushed towards both these treatments even though Primary cannot be located. They have decided best to start radiotherapy on groin reduction of lymph growing nodules immediately rather than to keep pursuing where the primary cancer might be originating from. Anal and rectal anoscopy ok. Next is cone biopsy and colposcopy.
If you received radiotherapy can u please tell me if it was painful. I have extremely sensitive skin and dislike the idea of both chemo and radiotherapy. I’m actually wondering if it’s better to let the cancer takes its course. I don’t think I will,be strong enough to tolerate the skin bleeding,🩸 breaking, and ulcerating.

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@susan38 A friend of mine had colon cancer, she had radiation and chemo. It was the last radiation that was most difficult, she is fine now 6 yrs later. Please don't give up!

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Profile picture for susan38 @susan38

@virginiald hello,thanks for the info. Did you have radiotherapy and chemo. I’m being pushed towards both these treatments even though Primary cannot be located. They have decided best to start radiotherapy on groin reduction of lymph growing nodules immediately rather than to keep pursuing where the primary cancer might be originating from. Anal and rectal anoscopy ok. Next is cone biopsy and colposcopy.
If you received radiotherapy can u please tell me if it was painful. I have extremely sensitive skin and dislike the idea of both chemo and radiotherapy. I’m actually wondering if it’s better to let the cancer takes its course. I don’t think I will,be strong enough to tolerate the skin bleeding,🩸 breaking, and ulcerating.

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@susan38 Have they biopsied the lymph node? That should give them the DNA of the cancer. As far as I understand it (having no formal medical training), a biopsy is crucial to diagnosing what kind of cancer you have. My anal cancer was diagnosed from a biopsy of the tumor in the anal canal (which is the 2" below the rectum). But because they also saw SUV uptake (bright spots) in my mesentery on the PET scan, they needed to biopsy those as well, to make sure the anal cancer had not spread. That's when they diagnosed follicular lymphoma.
I received chemo and radiotherapy for the anal cancer daily for 6 weeks. It is not a pleasant treatment and it is painful for most patients, me included. However, letting it "take its course" for any cancer is not a good option because it will only get worse. I totally understand about your fears of what the treatment could do to your skin. It may do all the things you mention, but it may also feel like no more than a bad sunburn - we are all different and react differently according to the particular type and intensity of treatment we get and what area is being treated. You will find you have the strength to endure it - I have many cancer survivor friends who can attest to this. Sending you big hugs as you navigate this difficult journey.

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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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