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Dhasatumor
Posts: 2
Joined: May 2018

throat pain and intense ear pain since Feb. insurance changed had to find new PCP. Fortunately, he sent me right away to an ENT. I had a nasoscope which revealed a smooth tumor. Was sent for a CT scan and scheduled for biopsy immediately Friday (5/4/18). They originally thought it was NPC, however during the biopsy 3 nodes were found. The biopsy was clear for NPC, but positive for lymphoma. I’m waiting for the path report to see what type? I’m scheduled to see a hematologist as soon as possible. A PET scan was also mentioned. Since this began almost 3 weeks ago I’m so exhausted I can barely function. i feel sick after every meal. Since the biopsy my ear is throbbing to the point I can barely stand it. I was given 5mg of hydrocodone, but even two at a time isn’t touching the pain. I was functioning just fine 3 weeks ago, and now I feel like I have the worst case of flu In my life. I almost feel crazy. Is this normal? My ENT has put a rush in the path report, she is hoping for answers by Wednesday...but could be as late as Friday. Should I call her in the am, and tell her I feel so bad. Or is this just part of it? Has anyone had ear pain like this? It’s making me sick to my stomach. It’s almost unbearable. I had accepted that it was cancer when they believed it was NPC. I’m A positive person, and I’m ready to fight....but this is wearing on me. I’m terrified that I have some form of really aggressive lymphoma given how quickly I’m declining. Any advice would be appreciated. I feel alone. My family is supportive, but they don’t understand the exhaustion or pain.

po18guy
Posts: 880
Joined: Nov 2011

You are getting results in almost record time. It took me two months and five doctors. I had a tumor behind one ear that was pressing on a scalp nerve. It brought tears at times. I dealt with the process by working my usual schedule through it, even though that may not have been the wisest. We each deal with this in our own way.

As to lymphoma, I would not worry so much about aggressive types, as they are generally easier to eradicate. Most of the slow-growing types are a long-term proposition, being categorized as chronic, manageable diseases. If it is lymphoma, the type and sub-type will make a difference in treatment.

Let us know how everything goes.

Dhasatumor
Posts: 2
Joined: May 2018

my PCP formally worked in the ENT office, he saw what he thought was tonsil regrowth. He was able to pull strings and get me into the ENT quickly.  My ENT had experience with NPC, and was able to schedule the biopsy right away because they had a cancellation. I have a prior relationship with the hematologist because factor 5 runs in my family, and I saw him to be tested. Though I won’t see him until official path report has been sent. He is waiting to hear from my ENT.  I work as a dump truck driver, and worked up to the day of my biopsy...but in the last three weeks by the end of the day I’m nearly in tears from exhaustion. I dealt with the ear pain without meds, but since the biopsy Friday it has become unbearable. She gave me the meds because I was under over 2 hours and extensive tissue samples were taken. I guess maybe I feel so bad because of the surgery. I don’t know what to think about the ear. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3044
Joined: May 2012

Dhasa,

I too was diagnosed because of secondary symptoms, just as you were diagnosed due to the pain.  Mine was cardiac, heart.  I was driving back from a service call in a company car one afternoon, and developed severe chest pain. I stopped and swallowed two BC powders, knowing that they are just straight asprin.  I was bent over, certain it was a heart attack. I made it to a rural hospital, and went in to their E.R.

The doctor did an EKG and some testing, and said I had a severed case of unstable angina. He put in a mobile transport ambulance to go to a regional, large chest pain center.  There, it was determined that I had no coronary issues; the issue was that huge nodes were compressing my heart.  Testing then determined that I had massive nodes througout my whole body, and a biopsy proved Hodgkin's.  The bad news was, there was no quick or easy way to stop the angina.  Luckily, the heart pain simply stopped, and did not return.

It was two months from that date until I got my first chemo infusion. I was begging to be fast-tracked the whole time.

Almost no Lymphoma is an "emergency" itself, although as with you and me, secondary effects from the disease, such as pain, can be severe in the interium period.  Lymphoma, in 90% or more of cases, is controllable, and does not rapidly kill.  It is virtually always discovered too soon for that to be the case.  But pain from pressing upon a secondary organ or nerve is a different matter.  It may require that you treat this via the pain meds.

Please inform as to the results of your biopsy.  I hope this will not effect your CDL, it should NOT.  Most ikely, your situation will be fixable.  The doctors are probably moving your case along as fast as current US medicine will allow,

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3044
Joined: May 2012

Dhasa,

I too was diagnosed because of secondary symptoms, just as you were diagnosed due to the pain.  Mine was cardiac, heart.  I was driving back from a service call in a company car one afternoon, and developed severe chest pain. I stopped and swallowed two BC powders, knowing that they are just straight asprin.  I was bent over, certain it was a heart attack. My jaw was contorted.  I made it to a rural hospital, and went in to their E.R.

The doctor did an EKG and some testing, and said I had a severe case of unstable angina. He put me in a mobile transport ambulance to go to a regional, large chest pain center.  There, it was determined that I had no coronary issues; the issue was that huge nodes were compressing my heart.  Testing then determined that I had massive nodes througout my whole body: all around the heart, wrapped around the whole length of my eschopagus, wrapped around the length of the superior vena cava (the largest vein in the body) and all over my spleen. Also covering the lungs.  A surgeon looked at the CT later, and said that I was either totally engulfed with Lymphoma, or was about to die of AIDS. I learned that most AIDS patients actually die of Lymphoma.  I told him I was at no risk for AIDS, and he ended up correct:  Lymphoma. 

Curious: despite massive nodes from my neck to groin region, I had never felt a node anywhere prior. In fact to this day, I have never felt a lymph node anywhere in my life.  A biopsy proved Hodgkin's.  The bad news was, there was no quick or easy way to stop the angina.  Luckily, the heart pain simply stopped, and did not return.

It was two months from that day in the ER until I got my first chemo infusion. I was begging to be fast-tracked the whole time.  My oncologist told my wife and me at our first meeting, when he said I was scheduled for my fist chemo infusion in two weeks: "If it were medically necessary, I would admit you to the hospital now, and have your get the first infusion today, but it does not matter; the two week wait will affect nothing."

Almost no Lymphoma is an "emergency" itself, although as with you and me, secondary effects from the disease, such as pain, can be severe in the interium period. 

Lymphoma, in 90% or more of cases, is controllable, and does not rapidly kill.  It is virtually always discovered too soon for that to be the case.  But pain from pressing upon a secondary organ or nerve is a different matter.  It may require that you continue to treat this via the pain meds.

Please inform as to the results of your biopsy.  I hope this will not effect your CDL, it should NOT. Of course, in the mean time, a person canot drive on opoids.  Most likely, your situation will be fixable.  There are around 70 types of Lymphoma current recognized by the WHO (World Health Organization). Most (65) are non Hodgkin's strains.  But aggressive or non-aggressive, all are treatable in well over 90% of cases.  The vast majority can be cured, which simply means put in full remission, and never detectable again. The doctors are probably moving your case along as fast as current US medicine will allow,

max

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