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

Hi. From Australia.
Similar story. Went for 4 years, night sweats, total fatique, not being able to get out of bed in the mornings, forever tired. From a fit ,healthy, highly active person, to a lazy do nothing individual. Saw several drs. For nose bleeding. Had quaterized veins in my nose three times, still bleeds, had two squamous lumps removed on top of my nose by Mohs surgery. First time told it was gone, but had not been totally marginalised and returned.
Developed, bowel and anus cancer. Held off from radiotherapy and chemo, on advice from oncologist at the time. Still fatigued. Still sweat nightly.
Moved my washing machine and dryer, and herniated 4 discs in my back (silly me) and developed a transient umbilical cord herniation. Great. Effectively lying on my back for over a year now. Just started walking again, pain meds useless. Sent home without care. I live alone.
A month ago, I came down with influenza A. Then COVID. how? From visiting occupational therapist, working out if they could approved for me to drive a motorised scooter to get the shops for food? First time COVID. obviously I’ve been previously immunised. Great. Now recovering. During the sciatica outbursts and the herniated disc, the hospital did a pelvic CT and pet scan.
Pet showed an enlarged lymph node In My groin.
My GP sent me to have it biopsied.
It has returned result of metastatic grade 4.
Thanks. Then Another Pet scan………….apart from groin…….apparently no other cancer? . Pet scans and CT apparently not 100% always.
This Im told by oncologist. Must have a primary cancer somewhere in my body. Can’t locate primary, anywhere so far. Blood count ok. So after several digital examinations, (nothing) I attended for a high resolution anoscopy.
Hurt a lot. bled a lot, still bleeding from my bowel and anus. Today I go for another test at anal rectal clinic. So sore I really don’t want another test. ……Tomorrow I get the results from the anoscopy.
I guess I’m saying one needs to really listen to their body. My night sweats, feeling feeble when walking, slightly losing my balance, bones aching etc.having difficulty going to the loo, all these issues started happening,
and I just kept working. Until …no more.
Apparently no one will operate on the groin lymph nodes until the primary cancer source can be found. In the meantime my next visits are to gynaecology for biopsy of the cervix, a cone biopsy and whatever else.
I’m tired of the drs visits, the hospital visits and sometimes I just want to be left alone. No drs. No visits. But Im Told groin lymph nodule has grown significantly and it’s an awful 😢 area to have cancer, as it will ultimately affect, veins and blood vessels down my left leg and elsewhere.
This is a long post for which I apologise. I joined the group because now I think I’m going to have to “Talk it out.”
And I hope my waiting experience will help others realise that waiting is not good. Listen to your body. Do not accept the first GP’s decision. Believe in yourself and follow up no matter how busy you are at work. Your life is important and keep whatever activities u enjoy for as long as possible. I’ve switched mine to Scrabble, board games, card games, things I can do from my bed on an IPAD to keep me company and keep my mind active. And I’ve started eating chocolate. Never a sweet eater. Now a craving for it at night.
Such is life, full of surprises.

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@susan38 I so admire your resilience! I sincerely hope yiu get some goos news soon. Thank you so much for sharing all this . Keep us posted on your journey to better health.

REPLY
Profile picture for susan38 @susan38

Hi. From Australia.
Similar story. Went for 4 years, night sweats, total fatique, not being able to get out of bed in the mornings, forever tired. From a fit ,healthy, highly active person, to a lazy do nothing individual. Saw several drs. For nose bleeding. Had quaterized veins in my nose three times, still bleeds, had two squamous lumps removed on top of my nose by Mohs surgery. First time told it was gone, but had not been totally marginalised and returned.
Developed, bowel and anus cancer. Held off from radiotherapy and chemo, on advice from oncologist at the time. Still fatigued. Still sweat nightly.
Moved my washing machine and dryer, and herniated 4 discs in my back (silly me) and developed a transient umbilical cord herniation. Great. Effectively lying on my back for over a year now. Just started walking again, pain meds useless. Sent home without care. I live alone.
A month ago, I came down with influenza A. Then COVID. how? From visiting occupational therapist, working out if they could approved for me to drive a motorised scooter to get the shops for food? First time COVID. obviously I’ve been previously immunised. Great. Now recovering. During the sciatica outbursts and the herniated disc, the hospital did a pelvic CT and pet scan.
Pet showed an enlarged lymph node In My groin.
My GP sent me to have it biopsied.
It has returned result of metastatic grade 4.
Thanks. Then Another Pet scan………….apart from groin…….apparently no other cancer? . Pet scans and CT apparently not 100% always.
This Im told by oncologist. Must have a primary cancer somewhere in my body. Can’t locate primary, anywhere so far. Blood count ok. So after several digital examinations, (nothing) I attended for a high resolution anoscopy.
Hurt a lot. bled a lot, still bleeding from my bowel and anus. Today I go for another test at anal rectal clinic. So sore I really don’t want another test. ……Tomorrow I get the results from the anoscopy.
I guess I’m saying one needs to really listen to their body. My night sweats, feeling feeble when walking, slightly losing my balance, bones aching etc.having difficulty going to the loo, all these issues started happening,
and I just kept working. Until …no more.
Apparently no one will operate on the groin lymph nodes until the primary cancer source can be found. In the meantime my next visits are to gynaecology for biopsy of the cervix, a cone biopsy and whatever else.
I’m tired of the drs visits, the hospital visits and sometimes I just want to be left alone. No drs. No visits. But Im Told groin lymph nodule has grown significantly and it’s an awful 😢 area to have cancer, as it will ultimately affect, veins and blood vessels down my left leg and elsewhere.
This is a long post for which I apologise. I joined the group because now I think I’m going to have to “Talk it out.”
And I hope my waiting experience will help others realise that waiting is not good. Listen to your body. Do not accept the first GP’s decision. Believe in yourself and follow up no matter how busy you are at work. Your life is important and keep whatever activities u enjoy for as long as possible. I’ve switched mine to Scrabble, board games, card games, things I can do from my bed on an IPAD to keep me company and keep my mind active. And I’ve started eating chocolate. Never a sweet eater. Now a craving for it at night.
Such is life, full of surprises.

Jump to this post

@susan38 thank you for sharing. I wish you strength and health in the journey. Eat as much chocolate as you want!!

REPLY
Profile picture for susan38 @susan38

Hi. From Australia.
Similar story. Went for 4 years, night sweats, total fatique, not being able to get out of bed in the mornings, forever tired. From a fit ,healthy, highly active person, to a lazy do nothing individual. Saw several drs. For nose bleeding. Had quaterized veins in my nose three times, still bleeds, had two squamous lumps removed on top of my nose by Mohs surgery. First time told it was gone, but had not been totally marginalised and returned.
Developed, bowel and anus cancer. Held off from radiotherapy and chemo, on advice from oncologist at the time. Still fatigued. Still sweat nightly.
Moved my washing machine and dryer, and herniated 4 discs in my back (silly me) and developed a transient umbilical cord herniation. Great. Effectively lying on my back for over a year now. Just started walking again, pain meds useless. Sent home without care. I live alone.
A month ago, I came down with influenza A. Then COVID. how? From visiting occupational therapist, working out if they could approved for me to drive a motorised scooter to get the shops for food? First time COVID. obviously I’ve been previously immunised. Great. Now recovering. During the sciatica outbursts and the herniated disc, the hospital did a pelvic CT and pet scan.
Pet showed an enlarged lymph node In My groin.
My GP sent me to have it biopsied.
It has returned result of metastatic grade 4.
Thanks. Then Another Pet scan………….apart from groin…….apparently no other cancer? . Pet scans and CT apparently not 100% always.
This Im told by oncologist. Must have a primary cancer somewhere in my body. Can’t locate primary, anywhere so far. Blood count ok. So after several digital examinations, (nothing) I attended for a high resolution anoscopy.
Hurt a lot. bled a lot, still bleeding from my bowel and anus. Today I go for another test at anal rectal clinic. So sore I really don’t want another test. ……Tomorrow I get the results from the anoscopy.
I guess I’m saying one needs to really listen to their body. My night sweats, feeling feeble when walking, slightly losing my balance, bones aching etc.having difficulty going to the loo, all these issues started happening,
and I just kept working. Until …no more.
Apparently no one will operate on the groin lymph nodes until the primary cancer source can be found. In the meantime my next visits are to gynaecology for biopsy of the cervix, a cone biopsy and whatever else.
I’m tired of the drs visits, the hospital visits and sometimes I just want to be left alone. No drs. No visits. But Im Told groin lymph nodule has grown significantly and it’s an awful 😢 area to have cancer, as it will ultimately affect, veins and blood vessels down my left leg and elsewhere.
This is a long post for which I apologise. I joined the group because now I think I’m going to have to “Talk it out.”
And I hope my waiting experience will help others realise that waiting is not good. Listen to your body. Do not accept the first GP’s decision. Believe in yourself and follow up no matter how busy you are at work. Your life is important and keep whatever activities u enjoy for as long as possible. I’ve switched mine to Scrabble, board games, card games, things I can do from my bed on an IPAD to keep me company and keep my mind active. And I’ve started eating chocolate. Never a sweet eater. Now a craving for it at night.
Such is life, full of surprises.

Jump to this post

Where do you live? It sounds as if you have gotten in believably bad care and poor advice.

REPLY
Profile picture for hsminc @hsminc

Where do you live? It sounds as if you have gotten in believably bad care and poor advice.

Jump to this post

REPLY

Thank you for ur response. Yes, I believe initially I receive poor, incorrect and inappropriate advice. However I travelled widely with my employment. I lived overseas, and in all states within Australia. I really never had a GP.

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Profile picture for sparkle @emmalevin

@susan38 thank you for sharing. I wish you strength and health in the journey. Eat as much chocolate as you want!!

Jump to this post

REPLY

Thank u for your response. I will,post more as I learn more.

REPLY
Profile picture for lizzyj58 @lizzyj58

@susan38 I so admire your resilience! I sincerely hope yiu get some goos news soon. Thank you so much for sharing all this . Keep us posted on your journey to better health.

Jump to this post

REPLY

Hi Lizzy, thanks for ur kind thoughts. Today I went to the colorectal clinic. Tomorrow I’m back at st. Vincent’s Hospital in Sydney. I shall keep posting as I really thing this is a great place to discuss issues openly and honestly, well at least to the best of ability.

REPLY
Profile picture for susan38 @susan38

Hi. From Australia.
Similar story. Went for 4 years, night sweats, total fatique, not being able to get out of bed in the mornings, forever tired. From a fit ,healthy, highly active person, to a lazy do nothing individual. Saw several drs. For nose bleeding. Had quaterized veins in my nose three times, still bleeds, had two squamous lumps removed on top of my nose by Mohs surgery. First time told it was gone, but had not been totally marginalised and returned.
Developed, bowel and anus cancer. Held off from radiotherapy and chemo, on advice from oncologist at the time. Still fatigued. Still sweat nightly.
Moved my washing machine and dryer, and herniated 4 discs in my back (silly me) and developed a transient umbilical cord herniation. Great. Effectively lying on my back for over a year now. Just started walking again, pain meds useless. Sent home without care. I live alone.
A month ago, I came down with influenza A. Then COVID. how? From visiting occupational therapist, working out if they could approved for me to drive a motorised scooter to get the shops for food? First time COVID. obviously I’ve been previously immunised. Great. Now recovering. During the sciatica outbursts and the herniated disc, the hospital did a pelvic CT and pet scan.
Pet showed an enlarged lymph node In My groin.
My GP sent me to have it biopsied.
It has returned result of metastatic grade 4.
Thanks. Then Another Pet scan………….apart from groin…….apparently no other cancer? . Pet scans and CT apparently not 100% always.
This Im told by oncologist. Must have a primary cancer somewhere in my body. Can’t locate primary, anywhere so far. Blood count ok. So after several digital examinations, (nothing) I attended for a high resolution anoscopy.
Hurt a lot. bled a lot, still bleeding from my bowel and anus. Today I go for another test at anal rectal clinic. So sore I really don’t want another test. ……Tomorrow I get the results from the anoscopy.
I guess I’m saying one needs to really listen to their body. My night sweats, feeling feeble when walking, slightly losing my balance, bones aching etc.having difficulty going to the loo, all these issues started happening,
and I just kept working. Until …no more.
Apparently no one will operate on the groin lymph nodes until the primary cancer source can be found. In the meantime my next visits are to gynaecology for biopsy of the cervix, a cone biopsy and whatever else.
I’m tired of the drs visits, the hospital visits and sometimes I just want to be left alone. No drs. No visits. But Im Told groin lymph nodule has grown significantly and it’s an awful 😢 area to have cancer, as it will ultimately affect, veins and blood vessels down my left leg and elsewhere.
This is a long post for which I apologise. I joined the group because now I think I’m going to have to “Talk it out.”
And I hope my waiting experience will help others realise that waiting is not good. Listen to your body. Do not accept the first GP’s decision. Believe in yourself and follow up no matter how busy you are at work. Your life is important and keep whatever activities u enjoy for as long as possible. I’ve switched mine to Scrabble, board games, card games, things I can do from my bed on an IPAD to keep me company and keep my mind active. And I’ve started eating chocolate. Never a sweet eater. Now a craving for it at night.
Such is life, full of surprises.

Jump to this post

have you done a Pet Scan yet?@susan38

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