Just two years earlier, inmy world was turned upside down when I was diagnosed with cancer. Fox Chase Cancer Center was one of two hospitals her doctor recommended. Tierra underwent chemotherapy and radiation therapy at Fox Chase, and in November was placed on surveillance because her cancer was in remission.
After a long, but succesful journey, and two bone marrow transplants, Frank is back to work part-time, maintains a regular fitness regimen, and has returned to many of his favorite activities. Diane experienced Fox Chase care first hand when she was diagnosed with Hodgkin's lymphoma at age 39 in Always a dynamo, Diane was married, running her own rehabilitation therapy business and the mother of 2 teen-age daughters.
In JuneI felt like I was on the top of the world. I had just graduated from Archbishop Ryan High School in Philadelphia, where I was active in student government, and was starting college that fall at Temple University. I had been healthy throughout high school after my kidney transplant injust a few days before I turned Lymphoma Patient Stories. Brian Kozera Lymphoma. Tierra Ryan Lymphoma. Frank Serianni Lymphoma. Diane Morgan Lymphoma. Chris Lyons Lymphoma. Request an Appointment.Perhaps I chose today to go public with my horrid story, or complete medical failure by the best of the best at all the world class hospitals, in a city known for world-class medical care, to get to a quick and proper diagnosis, because today I had my first official haircut after losing it all to chemo last year.
I have sat on my story for a year wondering how to share it and when and with whom. Today is the day.Hodgkin's Lymphoma Symptoms, Medical Oncologist Explains
For a year, prior to my diagnosis, I struggled with a terrible, body-wide, intractable itch. It is often referred to as "The Hodgkin Itch" since 30 percent of people harboring this cancer also have severe itching. It often worsens with triggers such as being outdoors in the heat and sun or eating high histamine foods, since the mast cells are basically degranulating when reacting to the cancer in this way. Nothing would make it better and nothing would make it stop, until the first night of chemo when the itching came to a sudden near halt.
It felt like a miracle, as I had gotten to the point where I was unable to sleep as the itching flared at night. It had gotten to the point where I had lost any quality of life. For a year, I researched my own case. For a year, I consulted doctor after doctor, asking almost everyone, "Could this be Lymphoma? I think this is Lymphoma! Over 30 percent of patients present this way!
They asked me if I was a doctor after listening to my detailed, educated and articulate presentation of my medical case, my endless blood tests, skin tests, and various diagnoses ranging from Mast cell disorders to Small Fiber Neuropathy to possible Lupus; all of which were wrong. Once the doctors found out that I was not a doctor myself, they stopped listening. I was fired by several for not fitting into their business model of "diagnose within ten minutes or get out of my office.
All had negative side effects. I told those same doctors, "I have been getting worse not better since you put me on xyz medication. Did you see that last blood test? It is borderline low.Symptoms of lymphoma often depend on the type you have, what organs are involved, and how advanced your disease is.
Recognizing the symptoms of lymphoma can improve your chances of receiving a timely diagnosis and prompt treatment. The two main types of lymphoma, non-Hodgkin lymphoma NHL and Hodgkin lymphoma, can both cause swollen or enlarged lymph nodes.
Your lymph nodes are part of your immune system and work by helping to circulate lymph fluid, which contains immune cells, throughout your body.
NHLs that start in the abdomen can cause your spleen or liver to enlarge, which can lead to swelling or pain in that area. If the cancer affects your stomach or intestines, it can cause nausea or vomiting. Lymphomas that press on the superior vena cava, a large vein in your upper chest, can cause trouble breathing; a change in consciousness; or swelling in the neck, head, or arms.
If the lymphoma affects your brain, it can spark headaches, trouble thinking, personality changes, weakness, or seizures. When these cancers travel to areas around the brain or spinal cord, they can trigger many neurologic issues, including double vision, trouble speaking, and facial numbness.
NHLs that start in your skin can cause itchy, red or purple bumps to form. If a lymphoma affects lymph nodes in your chest, you might experience coughing, chest pain, or trouble breathing, especially when lying down. Doctors commonly group specific signs of lymphoma together and label them B symptoms. Classifying these symptoms can help physicians give you a more accurate prognosis. Many symptoms of lymphoma are also present in other, less serious illnesses, such as an infection like the flu or a common cold.
These shared symptoms might include swollen lymph nodes, fatigue, fever, tiredness, and other signs. On the other hand, symptoms of lymphoma typically persist.
Or they might not recognize their symptoms as being severe. Individuals with the following types of lymphoma are more likely to be asymptomatic:. Having no symptoms of lymphoma can make getting an early diagnosis more challenging.
Your practitioner will probably perform a physical exam to check for swollen lymph nodes and any other possible signs of the disease.Cancer details: Slow-growing lymphoma that develops from B cells 1st Symptoms: fatigue, bloating, stomach pain Treatment: Chemotherapy, targeted therapy, surgery.
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In fact, many of the symptoms listed here are more likely to be caused by other conditions, such as an infection. Still, if you have any of these symptoms, have them checked by a doctor so that the cause can be found and treated, if needed. Non-Hodgkin lymphoma can cause lymph nodes to become enlarged. Enlarged lymph nodes close to the surface of the body such as on the sides of the neck, in the groin or underarm areas, or above the collar bonemay be seen or felt as lumps under the skin.
These are usually not painful. Although enlarged lymph nodes are a common symptom of lymphoma, they are much more often caused by infections. Lymph nodes that grow in reaction to infection are called reactive nodes or hyperplastic nodes and are often tender to the touch.
Can any of you share what your symptoms were prior to diagnosis?
Lymphomas that start or grow in the abdomen belly can cause swelling or pain in the abdomen. This could be from lymph nodes or organs such as the spleen or liver enlarging, but it can also be caused by the build-up of large amounts of fluid. An enlarged spleen might press on the stomach, which can cause a loss of appetite and feeling full after only a small meal. Lymphomas in the stomach or intestines can cause abdominal pain, nausea, or vomiting.
When lymphoma starts in the thymus or lymph nodes in the chest, it may press on the nearby trachea windpipewhich can cause coughing, trouble breathing, or a feeling of chest pain or pressure. The superior vena cava SVC is the large vein that carries blood from the head and arms back to the heart. It passes near the thymus and lymph nodes inside the chest.
Lymphomas in this area may push on the SVC, which can cause the blood to back up in the veins. This can lead to swelling and sometimes a bluish-red color in the head, arms, and upper chest.
It can also cause trouble breathing and a change in consciousness if it affects the brain. This is called SVC syndrome. It can be life-threatening and must be treated right away. Lymphomas of the brain, called primary brain lymphomas, can cause headache, trouble thinking, weakness in parts of the body, personality changes, and sometimes seizures. Other types of lymphoma can spread to the area around the brain and spinal cord. This can cause problems such as double vision, facial numbness, and trouble speaking.
Lymphomas of the skin may be seen or felt. They often appear as itchy, red or purple lumps or bumps under the skin.
I Knew... If Only the Doctors Had Listened to Me
For more details, see Lymphoma of the Skin.Patients Against Lymphoma. I was not totally crazy, I had cancer. In my case, my story will begin with how my cancer was NOT diagnosed. I was never one to go to doctors for little things, but in the fall ofI began running a low grade fever, complete loss of appetite, general malaise and pelvic pain that persisted for seven months. I went to my internist, who despite running a wide range of tests, wasunable to identify the reason, all tests were coming back relatively normal with only slight elevations in WBC and a few others.
I had numerous colonoscopies and gastric tests, all coming back normal. My internist early on seemed to have decided that what ever was going on was psychological After a few months, this internist was going on sabbatical and she essentially fired me as a patient, saying "Your fine, I see no reason for you not to try to get pregnant, and I think its best if you don't see another doctor in this practice while Im gone.
I'd lost a total of 35 pounds, looked like a concentration camp victim. Although my doctors couldn't diagnose me, the mailman at my office was spreading rumors that I had cancer because of the massive weight loss. I went to another internist, but the chart implying that I was nuts followed. This internist pulled me off the steroids as I was running a fever around degrees. More tests including exploratory surgery. However, a day or two after the steroids were stopped, my pain stopped and gradually my appetite returned.
The internists were aware of this but said it was nothing. It seemed to be growing and several months after the pain had stopped and my appetite had returned, I asked the internist to biopsy it.
He insisted it was nothing and I had the feeling he thought I was nuts. I persisted and got the biopsy. It came back benign. I felt absolutely fine for two years. In terms of public opinion, every last doc I saw thru this ordeal was on the published lists of "best docs" in the city. Do I take these lists seriously anymore-- NO. Then a 4cm node popped up on the other leg. This time the Drs were worried, did the biopsy pretty fast.
First impression was lymphocyte predominant Hodgkins. The pathologist had compared it with the earlier tissue and told me that an error had been made-- both biopsies looked the same. The third group of docs at the NCI cancer ctr where I was treated decided it was a follicular grade 3 lymphoma with diffuse areas.
I was put at stage 2 because the tumor that had been misdiagnosed was on the other leg. The mailman was right, the doctors were wrong.
Although I was VERY angry and scared about what the misdiagnosis would mean in terms of my eventual outcome I did not sue for malpractice. I had 3 rounds of CHOP, pelvic radiation and then rituxan.Just wondering about early symptoms with Lymphoma. It would help me a lot if any of you felt like sharing how that were feeling prior ro diagnosis.
Lymphoma Symptoms: Recognizing Them Early Aids Prompt Diagnosis
I lost weight and strength mainly. I was 12 pounds lighter at 5 months pregnancy than when I became pregnant. My tumor was in my chest and had collapsed my lung. So I was coughing for air at night but I didn't know why I was coughing. Dull ache under shoulder blade for a few weeks a year earlier that doctor's didn't do anything about.
And ONE night sweat. That was it. Lymphoma didn't cause me much direct pain. It was under my rib cage so I felt no lumps First we have to remember that each individual case is different. Lymphoma does not seem to have any bounderies and I am a perfect example. I had lymphoma in my face and not in my lymph system where it should of been. Having said that my doctor is always checking for swollen lymph glands. The night sweats are also a common signal.
A lump that seemed to be spreading and lots of pain was my final signal. But it still took the removal of a mass and 7 biopsies to find my cancer. There are proubly lots of medical problems that can cause the same symptoms as lymphoma so its always a matter of getting tests and scans done.
And I will say I had a gut feeling that I would be dealing with cancer. I wasn't pregnant but I had medistinal lymphoma and a terrible cough, so hard I was vomiting every couple of hours.
It started at night when I would lay down, I thought I was allergic to my down comforter and began sleeping on the floor. I also had a strange ache under the shoulder blade One symptom that I had that I've never heard before- for 3 or 4 months before I was diagnosed I had terrible constant pain in my neck and shoulders, like I had been in a car accident.
Hi I was reading your symptoms Mine were very similar. Wot we're u diagnosed with? I'm primary medialstinal large b cell! With me I put it off and put it off until I couldn't ignore the pile of symptoms that had built up. Not everyones symptoms are the same, and some have no symptoms at all. Hope I was of some help.
Sending well wishes your way. Yes - similiar symptoms as Joleen's. A year ago - first had itching then swollen nodes around the neck - was given antibiotics and they became smaller but still there.
Then wintertime I was low in vitamins so got B injections and supplements. My energy came back but later would have about once a month fatigue attacks. I lost about 30 lbs thinking that I suddenly became allergic to foods