Patient Comments: Hodgkin's Disease - Symptoms


What were the early symptoms of your Hodgkin's disease? Submit Your Comment

Comment from: Lana, 35-44 Female (Patient) Published: March 03

I was diagnosed with Hodgkin's disease in April 1996. I was pregnant (Age: 30/31) when my symptoms first started. (I had my baby in January 1996.) I was extremely fatigued. I had night sweats that would saturate the sheets. (I slept on beach towels!) My back would itch so bad that I literally drew blood scratching it. (This drove me crazy!) I did not experience weight loss. My blood pressure ran extremely low. I had three swollen lymph nodes in my neck. One was egg-sized. I was finally diagnosed when I "demanded" a biopsy of a lymph node in my neck. After my staging tests, I was diagnosed at stage II. Soon after that I started a treatment of chemotherapy and radiation therapy. I have had no recurrences; however, I must admit I have never felt the same since. I tire very easily, have shortness of breath and have gained a lot of weight. (This was never a problem before.) However, I am so thankful to have had these past 13 years to raise my four children!

Comment from: Juls, 35-44 Female (Patient) Published: October 13

My Hodgkin's disease started back in 1991. I had been extremely fatigued but was busy with college and wedding plans and thought nothing of it. I also had itchy skin and then developed a pretty bad cough. I noticed I had large swelling at the base of my neck. That is what prompted me to go to the doctor. After a week of it still being there, I went back to the doctor who then sent me to a general surgeon for a biopsy and after the biopsy they did a post-op chest X-ray and could tell that it was most likely Hodgkin's disease, and it was. I was then referred to an oncologist and went through eight months of chemo (ABVD) and six weeks of radiation. I have been cancer-free ever since.

Comment from: nikki, 25-34 Female (Patient) Published: April 25

The first time around, I had just a couple of lumps, but not too worrying. The second time I had Hodgkin"s disease, not much more but as well as the few lumps, one popped out while I was pregnant with my second child.

Comment from: stillhere, 25-34 Male (Patient) Published: March 26

I was diagnosed with Hodgkin's disease at the age of 25. I experienced pain in my chest, shortness of breath, and my lips turned purple. I went to the doctor and had a CT scan performed. The scan revealed a tumor pushing against my wind pipe. I went through chemotherapy and radiation therapy and have been cancer-free since 2005.

Comment from: marlana, Female (Patient) Published: March 03

I woke up one day with a strange lump about the size of a golf ball on the left side of my neck. I went to my family doctor who sent me straight to a throat and neck specialist who did not think the lump was anything to worry about. He put me on antibiotics thinking it was an infection, causing a lymph node to swell. The lump got bigger and he finally ordered a CT scan that showed about nine masses in my neck area. The large lump was then taken out and proved to be stage II Hodgkin's lymphoma.

Comment from: Tweety, 45-54 (Patient) Published: May 30

I was diagnosed with Hodgkin's when I was 24, now I am 54 and think I might have it again.

Comment from: Becky23, 19-24 Female (Caregiver) Published: March 26

My daughter who has autism was diagnosed with Hodgkin's lymphoma in January of 2015. She was 22 at the time. She had the flu and was not getting any better so we went to the doctor and they did a chest x-ray and that's when our world was turned upside down. She stayed positive the whole time. Nothing seems to get this young lady down. She is fully aware of how serious the situation is. My daughter said I'm going to beat this. I told her no, we are going to beat this as a family. Since her first chemotherapy treatment she has been doing excellent. We still have a long road to go but we are fighters and nothing will take us down.

Comment from: mozza, 45-54 Male (Patient) Published: October 15

I had Hodgkin's 28 years ago and had all the treatments. The pain was in my neck, armpits, glands, and down the front of my chest. After 10 years I was given all clear, but recently I've been having pains in back just below lungs. My water sample and blood count was all fine but I've still got theses pains.

Comment from: Kelly, 35-44 Female (Patient) Published: August 09

I didn't feel any different than normal to be honest. No weight loss, no night sweats, nothing but this bump where your leg meets the rest of your body. I saw 9 different doctors/specialists over it. It just kept growing the whole time. It hurt, but I think it was because it was rubbing on my leg. This thing went from the inside of my leg all the way around to my hip. If you can imagine that! The surgeon who was going to do the biopsy didn't think it was cancer, he actually told me that if he had to bet on it, he'd bet against it. A hematologist wanted to see it and when he did, he got right on the phone with the surgeon and said you might want to do this biopsy sooner than later. The surgeon said no. It can wait. I didn't have any typical symptoms of cancer. By the time things were said and done though, it was state 2 Hodgkin's. This was just last year (2011-2012) and after the 6 months of abvd, I guess I'm good. I've had one check up since anyhow :) I did ask my oncologist one day, because my white blood cell count had been going higher and higher for years, if that had a little something, something to do with my diagnosis and he did say yes. The oncologist was wonderful, bless his heart, he's not much older than me (I'm 36) and I can't imagine what it's gotta be like to have to look someone in the face and tell them-this may very well take your life-. They were very aggressive with the chemo. I did not radiation however; I actually did one more dose of chemo instead. (I do not have any children) Might have been for a study or something, they told me they've never done it before for my situation. I watched my Father die from lung cancer when he was 51. (I was 26) In those ten years, they sure have changed things. I wonder sometimes if what did't get me though the mess was that one day-we were out on the water and I got all teary eyed because I wondered if I would get to see these very same things the following summer or not. Right then and there I decided there wasn't much I could do about it either way and said "alright big guy, the ball is now in your court". Some things I guess you just have to hand over. Bless you all and may you all (myself included) live long, happy lives!


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Comment from: Relief, 13-18 Female (Patient) Published: December 08

When I was 16 years old, I started getting night sweats every day, and they gradually grew more powerful. I also started getting bad fevers, and I was losing a lot of weight, so I went to the doctor. He did blood tests on me, and he never found anything. So, he wanted to do a CT test. After that, he called me saying I had to come back immediately because they found something. So, I went back, and he told me I had cancer, but that he didn't know which one. He referred me to a cancer specialist, and they did many testes and biopsies. They told me I had Hodgkin's lymphoma. I had three weeks of chemo and one month of radiation. Now, I'm cancer-free.

Published: July 28

I first experienced a dull kind of pain on my left underarm and, soon after that, persistent flu-like symptoms (low grade fever, fatigue, coughing). I waited for a couple of weeks and as the fever wasn't going away, I visited my doctor. He gave me a series of blood tests in which everything looked fine except for the level of white bloods, which was higher than normal. The doctor suspected some sort of infection and repeated the tests over the course of three months. As the tests came back with virtually the same results, he referred me to the local hospital. By the time I went to the hospital for examination, I had a swollen lymph node just above my collarbone on the left side. The relatively frequent symptom of itchiness was also present at the time. A needle biopsy confirmed that I had lymphoma (although it was mistakenly identified as follicular Non-Hodgkin's lymphoma). A surgical biopsy about two weeks later established that I had Hodgkin's lymphoma, stage IIB.

Comment from: Bridget, 35-44 Female (Patient) Published: July 10

Happy to say I was finally diagnosed Stage 2 Hodgkin's Lymphoma! It took a while. The onset of my symptoms began with pain in my right shoulder several minutes after having any kind of alcoholic beverage. This lasted for several months. Once the shoulder pain resolved, I then began to experience INTENSE itching of the skin, this started 2 years ago. I also lost weight and experienced MANY papules on my chest and back. I saw a dermatologist and described my symptoms, she ordered a chest x-ray where a large mass was found in my chest. I'm currently in treatment (ABVD and radiation) but I'm glad to know I'm not crazy and something was wrong with me. Excited about treatment so I can get back to being 100%!

Comment from: Grizz., 45-54 Male (Patient) Published: June 25

On May 17 2011 I was diagnosed with stage 3 Bulk Hodgkin Lymphoma.I received chemotherapy (ABVD) for 6 month every other week. Im glad to say that's all I needed to beat this demon. The side effects were horrible but I'm alive today. On May 17th 2012 "still weak and recovering". I treated myself to a cruise to celebrate a second chance at life! Now June of 2013 I cherish every day. Best of luck to all who fight this cancer. My prayers are with you.

Comment from: 35-44 Male (Patient) Published: January 09

I was diagnosed in 2004 at age 34. My only symptom was a lump just above my collar bone on my left side. After a couple of weeks when it didn't go away, I visited a health clinic. They completed blood tests and ordered a chest X-ray looking either for an infection or possibly lung cancer. No definitive results came back and I was sent for a biopsy that clearly indicated Hodgkin's. I went through six months of ABVD chemo and have been cancer-free since.

Comment from: Varun, 19-24 Male (Patient) Published: December 08

My Hodgkin's lymphoma started with a bad cough and breathing trouble. At first, I didn't take it seriously. I thought it was some allergies. Then, after some weeks of vomiting, I decided to go to the doctor. He ran several tests including a biopsy, which confirmed it was Hodgkin's lymphoma.

Comment from: 25-34 Female (Patient) Published: December 08

I was diagnosed with Hodgkin's lymphoma in September of 2008. I had a constant severe backache, and I was tried all the time. I assumed it was because I was working a lot of hours. I noticed one day that I had a lump on the left side of my neck. I didn't think much of it. I just thought I may have pulled a muscle. I ended up having a severe back ache about a week after finding the lump. The back ache was so bad; it felt as if it was crushing my lungs, and I couldn't breathe. I went to the hospital for my back and decided to ask about the lump while I was there.

Comment from: Irene R., 45-54 Female (Patient) Published: October 09

In 1981, I first experienced extreme daily tiredness. I thought it was just due to overworking. I then went on to experience a toothache pain in my chest that mainly occurred in bed at night. I also began to notice pain in my neck and chest immediately after drinking half a glass of alcohol. I went back and forth to my general practitioner (GP) for two and a half years with these symptoms, and on my final visit, the GP examined my glands and discovered a large lump above my collarbone. I was sent for a series of X-rays and a biopsy whereupon I was diagnosed with Hodgkin's disease, stage IIB. I subsequently went for a laparotomy and was told I also had a mass between my heart and my lung.


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Comment from: 35-44 Female (Patient) Published: September 25

I was diagnosed with Hodgkin's Disease stage 4 and I did some research. I realize I had had symptoms for over a year. I thought my asthma was getting worse, itchy skin ,sore skin under armpits, tiredness, night sweats, dull ache in my lower back-All symptoms that could be put down to other things, which is so frightening.

Published: July 21

I had a bad cough that lasted for more than a month and a bump on the left side of my chest shaped like a long, low speed bump, over my breast and below my collar bone. Antibiotics finally cured the cough, but not the lump. It itched constantly. With as little as 1/2 a glass of alcohol, the itch intensified on the lump, while internally, it ached or throbbed. Blood tests and chest X-rays were normal. My MRI found the abnormality, and a CT scan confirmed it. The biopsy diagnosed Hodgkin's lymphoma - stage 2.

Published: June 27

Just an overnight itch and no fever at all. Although I experience those sweating, lethargic condition for several weeks and loss of appetite I thought it's only a normal.

Published: June 16

I had swollen lymph nodes that were painless at first and then became very painful to the point I felt weighed down. I also had night sweats and ran fevers.

Published: June 12

Itchy rash x 4 years, heavy sweating and drenching night sweats, left pleural effusion (blood tinged) and peritoneal effusion also blood tinged. Edema in legs.

Published: June 09

The first time I had Hodgkin's lymphoma I had a swelling in my neck in the lymph glands. The second time it occurred I had night sweats, loss of appetite and was incredibly tired, needing a sleep in the middle of the day. The third time I had night sweats, swollen tummy as it had taken over my spleen, weight loss, very tired and in quite a bit of pain.

Comment from: Rosalie, 75 or over Female (Caregiver) Published: March 27

My mother recently died due to Hodgkin's disease. Her symptoms were two hour nose bleeds, fever, itching, tender skin, fatigue, and constant pain. I hope some day that there would be a cure. It was a sudden death. The doctor did not let her know why she was sick she also had lots of water retention. Thanks for giving me a chance to let others know it could be very sudden. It was very sudden for my mother she was 88 yrs old and very spunky till the day I took her for a visit to the doctor and he told us to admit her to the hospital where she was diagnosed. Thank God we were able to bring her home where she died. I had no choice, but to let her go. I hope someday I will know that they find a cure.

Comment from: sew2joy, 45-54 Female (Patient) Published: August 06

I had tumors above the collarbone and spread to my chest. At the time I was pregnant with my daughter. I noticed the lumps at three months, and I started feeling the tightness around my throat at seven months. They surgically removed the baby to explore lymph nodes and started staging immediately. I had symptoms of night sweats as soon as the baby was born.

Published: July 09

I had severe lower back pain. At times, I couldn't move, and it hurt to breathe because I was in so much pain. It was nine months before any lumps or bumps appeared, and then I was finally diagnosed with Hodgkin's disease.

Published: June 30

I had a cough for a few weeks and then my collar bone appeared swollen.

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