Patient Comments: Hodgkin's Lymphoma - Share your Experience

Question:

Do you, a friend, or relative have Hodgkin's? Please share your experience. Submit Your Comment

Comment from: Kimberly , 55-64 Female (Patient) Published: December 14

I'm 40 years old and fell and broke my hip 2 years ago. I've had to have hip replacement 4 times due to complications, the first one being the doctor did a partial and it should have been a whole. The second not even a year later was to fix the first, and I developed staph, so went back in and replaced parts, so that was the 3rd. The 4th was to go in and get fluid off which resulted in my leaving the hospital with a central line and wearing an antibiotic ball for 6 weeks. Now it's been 2 years and I'm having terrible groin pain that there isn't enough pain medicines to help, I can't sit, stand or lie down.

Comment from: Lizzy, 55-64 Female (Patient) Published: December 21

I had Hodgkin's when I was 23. I had a pretty grueling year of radiation and chemotherapy, became extremely ill and almost died from double pneumonia when my white cell count was at its lowest. But I recovered and had two healthy children, grandchildren as well. I am 58 and although my health is not perfect I have been Hodgkin's free ever since 1992.

Comment from: MaryP, 45-54 Female (Patient) Published: September 23

I was diagnosed with Hodgkin's lymphoma at the age of 49. I had chemotherapy for 5 months and radiation for 3 months. My primary care physician (PCP) didn't know what was wrong with me so, when I went to the eye doctor he said I needed to have an MRI of my entire spine. There they found the tumor on the left hand side of my chest. I had two biopsies with no medication. I had the bone marrow biopsies on the left and right hip with no medication. Life was awful with cancer and medical treatment. It's been 10 years and I'm still here.

Comment from: Nigel, 55-64 Male (Patient) Published: October 22

My wife had Hodgkin's Lymphoma when she was 16, I was 17 then. She had her spleen removed and had 6 months of intense radiotherapy from nose to knees. I was then diagnosed with Hodgkin's 10 years later, my spleen was removed and I too had 6 months radiotherapy, had a recurrence after 5 years on, so was given 6 months chemotherapy. I am now 55 years old, and we are both alive and well with three lovely children; I mention them because it was said that we would probably not be able to have children due to our past treatment. It has not been plain sailing as both have had medical issues due to the radiotherapy treatment and both ending up with hormone replacement problems after treatment, but very happy and grateful for our present extended lives.

Comment from: joseph, 55-64 Male (Patient) Published: September 04

I have Hodgkin's lymphoma and gone through 6 months of chemotherapy and now have a secondary illness that they think I have pulmonary fibrosis caused from the chemotherapy. It took just about all of the treatments to give these side effects but the last 2 months it finally took its toll. Now I have shortness of breath and weakness. I am on nebulizer and steroids to see if I can get better, but this is now not any better than the primary illness that I started with.

Comment from: Nikki, 35-44 Female (Patient) Published: April 25

I followed my uncle in having Hodgkin's twice... I've lived, him not. I try to keep my experience positive, even with his negative one behind me.

Comment from: jackie, 13-18 Female (Caregiver) Published: March 18

My daughter is currently being treated for Hodgkin's with BEACOPP escalated dose every 3 weeks for 6 cycles then PET scan to hopefully avoid radiation. After 2 cycles she was PET negative so we are very excited that the chemotherapy is working. It's hard to see such a beautiful young girl manage her life while on this treatment, it's a long journey. We are relieved to know Hodgkin's disease is treatable and curable but it's very hard and before the treatment it was so devastating for us to watch her visit doctor after doctor to finally be told she has cancer, what a shock, so glad we are now on the road to recovery.

Comment from: danny, 65-74 Male (Patient) Published: June 25

diagnosed hodgkins in 1972, them doctor said changed diagnosis to "we dont know". fast forward 37 years, hodgkins symptoms reappear, this time stage 3b. get 20 chemos "abvd" on 16th treatment chemo drug bleomycin attacked lungs. I now have oxygen bottle 24 hours a day. alive but wonder if treatments go too long just to reassure doctors????

Comment from: gazza, 45-54 Male (Patient) Published: May 16

I am 49 years old and had multiple lumps on both sides of my neck. I had a biopsy done in September of 2012, which came back as Hodgkin's lymphoma. I had six months of chemotherapy, and then had a PET scan after that. I have two lymph nodes in my chest, so I had 20 treatments of radiotherapy over four weeks. I'm not feeling very confident, as my radiologist said my cure rate has gone down from 95% to 10 to 20% chance of the radiotherapy curing me. I'd like to know if anyone has lived to tell his or her story about being cured.

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