Patient Comments: Hodgkin's Disease - Diagnosis


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Comment from: wil, 45-54 Male (Patient) Published: December 01

The itching and rash appeared 6 months before we found two firm lumps (the clavicle and neck). The rash was on my ankle, knee and beside my lip. Itching mostly on my legs. The itching symptoms didn't directly lead to a diagnosis, but had me watching closely as I knew something was not right. A physiotherapist found the lumps treating numbness in my arm which was possibly because of a lymph node pushing on the nerve as it went away with the first chemotherapy treatment. Eventually I got a biopsy and was staged as a 2A Hodgkin's lymphoma, nodular sclerosis type. I got that fixed with ABVD and radiation. A year later my body is itchy so I am going to see my oncologist this week.

Comment from: fightcancerwithfire, 25-34 Male (Patient) Published: May 05

I am a 34 year old firefighter who noticed a lump on the lower part of the right side of my neck, just above the collar bone. I was referred to a surgeon who did a biopsy of a swollen lymph node. I have early stage II Hodgkin's lymphoma. One of the earliest signs I had was 6 months prior; I had itching without a rash on both of my lower legs, inner thighs and the back of my arms with some facial itching as well. I went to a doctor and a dermatologist who just gave me some general instructions on how to keep my skin clean and properly moisturized. I was also open to the idea this could have been some kind of seasonal allergy I was developing but had never gone through this before. Those symptoms diminished after July but I started to notice more fatigue for several months (September to December) leading up to the lump on my neck (late December). My treatment is 4 months of chemotherapy and the latest scan, taken 2 months in, was clear of the cancer via PET scan which is more detailed than a CT scan. I should be done after 4 months of chemotherapy, not needing any radiation, with low chances of the cancer returning.

Comment from: Taylor, 35-44 Female (Patient) Published: September 19

I was always sick with some type of virus. We had moved from Wisconsin to North Carolina so I assumed my allergies were getting the best of me. First swollen node was noticed in August 2016 and it was dismissed as a virus. My vision started going, I had dizzy spells, rashes, overall ill feeling, night sweats, overall itching everywhere, and 3 hospital admissions. Two years later, on 09/13/18 at 2:45 PM after my last almost week-long stay in the hospital and a removal of a growing node on my right side of neck, my doctor called with the diagnosis: Hodgkin's lymphoma.

Comment from: Marlene67ca, 45-54 Female (Patient) Published: August 30

I do not have any diagnosis; however, I am worried about Hodgkin's disease. About 6 to eight months ago, I started to experience itching of the scalp to the point that I was sure I had lice. The skin on my face was extremely sensitive, my hair brushing my skin drove me crazy. My doctor told me to take Benadryl regularly until it stopped. The itching calmed down and moved to my stomach just under by breast on my rib cage. I then began having hot flashes day and night (I am 48 so could be menopause). I could not sleep more than a half hour at a time between the hot flashes and itching. My abdomen began to swell. A CT scan showed I had a swollen spleen and lymph nodes. They said it was most likely viral. I also had a colonoscopy last week, and they removed a polyp that they were not worried about and everything else seemed fine. I have been taking hormones and it has helped with the hot flashes. My abdomen is still swollen and hurts when I am in a car, sitting straight or when I wear tight clothes. All my blood tests came out normal about a month ago. I have been sleeping in a Lazy Boy for months now. I Feel tired but have not lost any weight. I have started losing my appetite in the last week or so. I see my doctor soon, but worried he will not take my symptoms seriously. I have not had a cold in years, a little out of breath, but I am also overweight by 30 pounds and out of shape.

Comment from: BE, 25-34 Male (Patient) Published: June 20

I am a 33-year-old male. About six months ago, I noticed some lumps on my neck. I thought I had a sinus infection, something I have dealt with throughout my life. After taking antibiotic, which did nothing to help, I had a CT scan. The scan detected several infected lymph nodes in my neck and one in my chest. After a biopsy of one of the lymph nodes, it was confirmed that I have Hodgkin's lymphoma. I start chemo and radiation in two weeks. Wish me luck.

Comment from: counselormimi, 35-44 Female (Patient) Published: November 02

After by-pass surgery several years ago, my sister began to have severe pain in the chest area. Her condition was described as osteochondritis with neuropathy. The pain when she breathes is now causing shortness of breath. A procedure to numb the areas was denied after her medical history and blood thinners were disclosed. She is awaiting another appointment with her doctor.

Comment from: Silverqueen, 19-24 Female (Patient) Published: March 23

I have an implantable loop recorder implanted just below the skin on top of my left breast. Since October 2015, this device has confirmed those 'weird' heart flip flops, tachycardia, etc., and now it appears cardiac ablation might be my best option.

Comment from: Chris, 35-44 Female (Patient) Published: November 08

I was diagnosed in 2000 at the age of 35. I had a non-painful swollen area above my left breast that within two weeks grew into more of a defined lump. I was having severe night sweats, fatigue and remember just not feeling right. After CAT scan I was diagnosed with Hodgkin's Lymphoma in my chest wall. After a double bone marrow biopsy I did 9 months of chemotherapy and 6 weeks of radiation. No problems since.


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Comment from: molly, 7-12 Male (Caregiver) Published: October 11

My son was diagnosed with Hodgkins Lymphoma in 1999 when he was 11 years old. His ONLY symptom was a few painful bumps in his neck. He needed Panadol each night to help him sleep. He displayed no signs of tiredness, weight loss or anything else, though the circles under his eyes were a little darker that normal. A blood test revealed presence of the EB Virus. The doctor assumed (naturally) that he was suffering from glandular fever. Put it down to mother's intuition (never underestimate this) but I suspected it was more serious, so more tests were done and eventually the biopsy confirmed Hodgkins Lymphoma. He had 6 months of chemotherapy at RCH in Brisbane which began exactly 6 months after the first bumps in his neck appeared. He is now a healthy 23 year old.

Comment from: boris, 25-34 Female (Patient) Published: January 20

I am currently going through chemo (ABVD) for stage II Hodgkin's Lymphoma. My symptoms started as extreme itching and little bumps on my skin. I saw 6 dermatologists who just kept giving me creams for the itching. This lasted for close to a year. I then developed severe lower back pain and my stomach started to protrude, as if I were pregnant, which I wasn't. It was only after this last symptom that I was finally given a CT scan and told that I had cancer.

Comment from: Mike, 13-18 Male (Patient) Published: April 08

I had a large hard lump on the left side of neck. My primary care doctor felt other smaller lymph nodes along my collarbone and referred me to a surgeon for a biopsy. The biopsy results were classic Hodgkin's lymphoma.

Comment from: chelle, 7-12 Male (Caregiver) Published: April 05

My son was 10 years old when he was wrestling around and mentioned that his neck hurt. We could feel a huge lump (6 inches long by 3 inches wide) on the left side of his neck. We took him to the doctor who told me it was a growth. He had a biopsy and they called the next day and said it was Hodgkin's disease. He went for 7 months of chemotherapy and 12 weeks of radiation. He's been cacner-free for 18 months now!

Comment from: Chuck77, 25-34 Male (Patient) Published: August 16

I had been dealing with extreme fatigue for about 6 months. I was having real bad chest pains and went to the E.R. thinking that I was having a heart attack. They found that I had fluid built up around my heart and also noticed some enlarged lymph nodes in my neck/collarbone area. I had surgery to remove the fluid from my heart and they did a Biopsy also which came back positive for Hodgkins Lymphoma.

Comment from: 201.90, 19-24 Male (Patient) Published: June 02

I thought I had bronchitis for a few months with uncontrolled coughing and a constant pressure on my chest. After antibiotics didn't help, a chest x-ray was given and that's when they found the tumors. I had a swollen lymph gland behind my collar bone and night sweats. I was diagnosed with stage 3b HL in December. 6 months of AVBD took away mostly everything, but now I have to get a stem cell transplant and higher dose chemo because they're not responding to treatment.

Comment from: 4everthankful, 55-64 Female Published: February 14

In 1992, I had a persistent cough for over 3 months and eventually became extremely fatigued and itchy. Every now and then I would run a low-grade fever. Doctors prescribed antibiotics and cough medicine which were useless. Then I became short of breath. My husband took me to the ER at the local hospital here X-ray revealed a large mass in my chest. After CT-scan, biopsy and blood tests. I was diagnosed with stage IIB HL. I was treated with ABVD for 6 months followed by radiation. I have been in remission almost 20 years.


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