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Thread: Possible Lymphoma (I read the sticky)

  1. #1
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    Jul 2019

    Possible Lymphoma (I read the sticky)

    Hi everyone,

    I am a 20 year old female going into my junior year of college. In March of 2019 I fell extremely ill and have not gone back to normal since. It started with extremely high fevers up to 102 degrees, a complete loss of appetite, swollen lymph nodes in my neck, nausea, sore throat, etc. I wasn't worried because they were all typical flu symptoms, but after about 8 days with an extremely high fever I decided to go to the urgent care to make sure that nothing else was seriously wrong (Meningitis B was going around my school at the time and although I knew this wasn't likely, I wanted it in writing to calm my parents nerves who were freaking out and live across the country). I told the doctor about the Men B outbreak at my school and he did a quick physical examination and came to the conclusion that I most likely have pneumonia but if my symptoms get any worse in the next day I should immediately go to the emergency room. Not only was he extremely out of line for telling me that Men B was a possibility without having me go get checked, he was also completely wrong about pneumonia and should have done further testing, such as a chest x- ray, before diagnosing me. I flew home the next day because I was much too sick to take care of myself and continued to have these symptoms for about another week.

    I saw my PCP at home and she made note of all of my symptoms and told me that I definitely do not have pneumonia and that there is absolutely no chance that I had Men B because I would already be dead at this point. She explained that most likely it is just a nasty virus, prescribed some medication, and sent me on my way. I eventually started feeling a little better, packed up, and went back to school. My fevers were now 99 to 100 degrees each day, i could eat a little more, and my nausea went away, but I was extremely tired which i assumed was just my body recovering from the stress it was under for the last couple weeks. This went on for a couple more weeks and although I thought it was weird that I still had a fever, I wasn't too concerned at this point.

    About two weeks after the initial sickness I began to feel a pain in my chest when I would breathe deeply. In a few days this developed into a pretty nasty cough and eventually my fevers were spiking up to 102 again. At the time I didn't connect the two illnesses, I just assumed that I was unlucky and caught two viruses within a short span of time. about a week into this illness I began to have HORRIBLE night sweats. I would wake up twice in the middle of the night, change my clothes, and put towels down on my bed before I could go back to sleep. This was unusual for me so I decided to return to urgent care (a different one this time) just to make sure that everything was okay. The doctor I saw this time told me that I just had the flu and there was nothing they could do for me because I had come in too long after I initially began to feel sick. I left feeling slightly frustrated because I had seen 3 doctors at this point, all who had different thoughts on what was happening, and all who basically told me I was fine and just needed to wait it out.

    Another week goes by and my fevers are down to the 99-100 range but my night sweats have not improved at all. I had been sick for almost two months at this point and needed answers as I had no energy and began falling behind in my classes. I called the schools doctors office and asked to speak with a nurse because everything was getting out of hand at this point. I told her about the night sweats and the multiple months of having a constant fever and she told me that I was fine i just had the flu and that the night sweats were just my fever breaking. I made it clear that I had never experienced anything like this before and that I felt like my night sweats were not related to the fevers but she insisted that I did not need to see a doctor and that I should just wait it out to see if it improves on its own.

    I'm sure its clear at this point that my doctors were incredibly underwhelming and should have done much more to help me as I was truly suffering. My night sweats continued for a total of three weeks before slowly getting better, but then i began itching. The itching was all over my body, from my face to my chest, arms, stomach, and legs. I was miserable. I couldn't sleep, I'd had fevers everyday for over two months, and after being told over and over that I was fine I began to feel like this was all in my head and I was making a big deal out of nothing.

    There was mold in my dorm bathrooms and i figured that maybe I was having an allergic reaction and that is why I started itching. After the semester wrapped up I went home once again and the itching only got worse even though I was no longer exposed to mold. At this point I was also noticing unexplained bruises on my thighs, bloody noses, and congestion. I was so sick of being sick that I went to the doctor yet again begging her to run some tests and figure out what was going on with me.

    She agreed that this was all weird and ran a bunch of tests (like literally every test possible, the majority came back negative) and an X- ray of my head and chest. I was then diagnosed with adenovirus, a sinus infection, a high ptt count, a high eosinophil count, low potassium in my blood, high protein levels in my blood, and trace ketones in my urine. This alarmed her slightly and she prescribed me antibiotics and had me come back for more blood work once I completed them.

    In about two weeks I returned to the doctor still itching, exhausted, and having low fevers nearly everyday and got more bloodwork done to make sure that the high PTT wasn't a false positive or due to my infection. My PTT came back high once again and my doctor ordered a chest, abdomen, and pelvis CT as well as began the referral process to see an oncologist/ hematologist.

    I saw the hematologist/ oncologist about a month later and she told me that my CT came back pretty much clear. I had a small pulmonary nodule on in the right upper lobe, a small amount of subsegmental atelectasis in the left lower lobe, and a duplicated inferior vena cava. No tumors, or anything too worrisome which was a good sign. She felt my lymph nodes and the ones in my neck were enlarged and not tender at all and i told her that they had been that way for nearly 4 months at this point. She also noted some swollen lymph nodes in my groin which I am still confused as to why they didn't show up on the CT scan. The oncologist ordered more bloodwork and a CT of my neck and let me know that lymphoma was a possibility at this point. She wanted to see me in a month which was right when I was supposed to be heading back to school across the country. This is when I kinda lost it because if I had cancer obviously I wasn't going back to school and that is something that I needed to know and prepare for ahead of time. The doctor was so rude and the schedulers were not understanding of my situation at all.

    Eventually they moved up my appointment and I got in to see her this past week. My bloodwork came back and I had a very high eosinophil count, low potassium levels, and although my PTT had gone down, it was still high. My CT of my neck showed that I had enlarged lymph nodes but my oncologist said that she didn't think that I needed a biopsy at this time and that my insurance wouldn't approve it anyways. She assumed that they were reactive because a month ago I ad adenovirus but I just don't know how i feel about that because they are not tender whatsoever and have been there for nearly 5 months. She also told me that I am probably just sleeping so much because I am depressed. She wanted me to come back in 3 months to get rechecked to see if there was any changes and decide if we want to move forward with the biopsy then. She told me to see an allergist and that if we cant figure it out then we could always go to an academic hospital like UW or Mayo clinic so that they can figure it out.

    As of right now I sleep a total of nearly 14 hours a day, the itching has not stopped, I have a low grade fever everyday, I have no energy, and I cannot do the things that I normally love such as working out and hanging out with friends. I don't know wether I should return to school in the fall because this is all in my head and not as big of a deal as i'm making it, or if this is serious and I should stay home. I am at such a loss and I have absolutely no idea what to do next. I have an appointment with an allergist which I am going to next week but I have had allergies all my life and never has my eosinophil count been this high and never have I had itching on my legs like i do now. I also am planning on seeing an ENT because my oncologist told me that I still have a sinus infection but I cannot see how that is related to the majority of the symptoms that I am having.

    If anyone has gone through something similar or has any advice for me I would greatly appreciate it. I am not sure if it is over the top to get a second opinion on my CT to see if i need a biopsy because at this point lymphoma is the only thing that ties everything together. Maybe I just have been extremely unlucky the past few months and have caught literally everything in my path, but if that is the case then I feel like there has to be something going on with my immune system because never have I been sick this much in my life. Sorry for the novel, i'm just so frustrated and am hoping to get some advice about what I should do moving forward!

    Thank you!!

  2. #2
    Moderator Senior User IndyLou's Avatar
    Join Date
    Jan 2014

    It sounds like you've been through a lot, and the lack of specific answers along the way has not made your suffering any easier. We are not doctors on this forum, and I cannot possibly piece anything together for you, but I would like to share what I think. We have seen numerous young adults like you write with similar symptoms.

    First, kudos to you for following up with your PCP. That's really the best action you can take. We see a lot of people with some random symptoms, and then follow-up with some self-diagnosis based on what they found on Google.

    Second, you are a college student and a young adult. That environment seems rife for all kinds of shared viruses and bacteria to be spread. I remember a spell when I was in school (though it's been some time ago), when I harbored a respiratory illness that kept me under the weather for several months. I felt I couldn't afford to miss classes, and I didn't have great healthcare at the time. I'm sure I likely had swollen lymph nodes and fevers. What I'm saying is, it's not uncommon for severe illnesses like yours to happen in this population.

    Finally, you've had several diagnostic tests that have all come back with either decent, or unremarkable results. Your high eosinophil count could be directly attributed to your body fighting off an infection. Your doctors agree, and they don't seem overly concerned. Their lack of concern should not be interpreted to be anything more than it is...it could simply be that in their trained mind, your results don't look like cancer to them. That should be of comfort to you, not a cause for concern.

    It may seem anathema to you, but you need to give into what your body needs, and give it some rest and nutrition. I'd still stay in touch with your PCP--ask them something like, "if my symptoms don't improve, when should I call you back?" Or, you could ask them what OTC meds might help you relieve your symptoms or allow you to function. Slowly, as your body allows, get back into your workout routine. Stay hydrated and rested. Wash your hands frequently. You have been given good news!
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED


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