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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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@susan38 I agree, it makes the whole process a little clearer when we can discuss things with someone that has gone through all this.
Yes. Two PET scans. Apart from the groin lymph node enlarging significantly it is apparent that the PET scans are not showing any other cancer.
Which is strange since the high resolution anoscopy does.
Friday I go for a colposcopy at the gynaecologist.
@susan38 My lymphoma dx coincided with a dx of anal cancer. Make sure they check for that. I had a tumor in the anal canal. A biopsy was necessary to dx squamous cell cancer. Treatment for that is not a 'watch and wait' kind of situation. I am now 9 years clear of the anal cancer, and have just started BR treatment for follicular lymphoma. Keep us posted.
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6 Reactions@virginiald Surely your doctor can suggest a Pet scan,this shows everything that is going on in the body. It must be very frustrating to feel that you are not being heard . Maybe try new primary care doctor? Don't give up and listen to your body.
@lizzyj58 I'm not sure who or what you are referring to in your reply to me. Perhaps you meant this to go to susan38? I get PET scans regularly and was on W&W for nine years since the chemo I had for the anal cancer wiped out all signs of FL. It has slowly returned according to the regular PET scans over the years, then aggressively per the PET scan I had in July. That's why I am now in treatment. I was giving susan38 a heads-up since her high-res anoscopy shows cancer even though the PET scans do not. This can happen. A colposcopy may well examine the cervix, but may miss tumors in the anal canal. Both cancers are triggered by the human papilloma virus, to which we have all been exposed.
@virginiald I'm sorry that I mixed up my reply! Also I'm sorry that you are going through all of this. I sincerely hope that you will be okay!
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1 Reaction@lizzyj58 hi. I’ve had two PET Scans and am about to,have a third. The PET Scans nor the CT are showing anything more than the metastasised groin lymph nodes. PET SCANS are only 85% of show all. I really do not understand this as I was also informed that a PET Scan would pick up all and follow,the lymphatic system to the primary cancer origination.
to the primary. This has not happened.
@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.
@susan38 That must be very hard for you. I'm so sorry you are going through all this. Sincerely hope you will get some good news soon!
@susan38 sincerely hope you will get good news soon!