Hodgkin's Disease

[livingwith]

My daughter was a healthy 16 year old when in November of 2006 came down with a cough. She had this cough for about a month and a half before her GP decided to do a chest X-ray. That x-ray showed that she had a large mediatinal mass (in the chest area) pressing on her lung making her cough. We took her the following week to the ER and they did blood work which only showed she was anemic. But since the x-ray and CT showed the mass they admitted her to the hospital and did CT, bone scan, lymph...Read the full article

[mister431]

We went through a similar situation with our daughter this past spring. She was 15 at the time (now sweet 16). In late winter she began to complained of fatigue and developed swollen joints in her wrists and ankles. We took her to her pediatrician who in turn referred us to a orthopedic specialist. He couldn't figure out what the problem was, so he put her wrists in braces and said to wait and see if her condition improves. It did not-in fact, it got worse. After about a month of increased fatigue and continued joint pain, we were referred to the University of Maryland Children's Hospital in Baltimore for further tests. After a three day hospital stay which consisted of many test to include a lymph node biopsy, it was suspected that she had Lupus. We were sent home with an appointment to see a Rheumatologist. We were home for one day when she began to vomit continuously. We returned to the hospital within a day and a half and our daughter was admitted. This is when the odyssey began!

Over the next three or four days, many doctors came in to examine her, but weren't very forthcoming with information about what they suspected. At about day three is when I first heard the word lymphoma uttered. Now, I must admit that no real alarms went off in my head when I heard this, partly because I really didn't believe it was a possibly and secondly, I really didn't know much about cancer. In my world it was always something somebody else got. Then the biopsy results came back and that's how we were introduced to Hodgkins Lymphoma. On top of that, we were also told that our daughter did, in fact have Lupus also. Double Wammy!!! Fast Forward: port implant, four cycles of chemo between April and July (early responder after cycle two), 14 sessions of low dose radtiation. As of this writing, we wait to have our one month followup CT and PET scans.

More information: our oncology team informed us that it has been reported in the past that Lupus has "disappeared" with the sucessful treatment of Hodgkins. Now, I don't know if that means it bcomes dormant, undetectable or what, but we're praying that we fall into that category.

Anyway, that's our story so far. We know that God will give us a happy conclusion.

[bdc352]

You and "Livingwith" have it doubly hard. It is tough enough having this disease (HD) myself, for the third time, but I know that you must really be anxious because your children are affected (I am a father myself). My first go-around with HD involved a staging laparotomy, removal of 3 malignant nodes from my groin, installation of a port (which I highly recommend), and 6 months of chemo. The chemo made me so sick I could barely function. Luckily, I was introduced to Zofran, an anti-nausea drug...very expensive at the time (1993-4) but worth every cent.

My second go-around with HD involved the surgical removal of 2 malignant nodes and 25 doses of radiation.

My third go-around will (tentatively) involve a bone marrow transplant. I had a malignant node removed from my neck/collarbone area Friday before last. The surgeon said the mass and node he removed was the size of a golf ball.

In our favor: HD is one of the more "treatable" forms of cancer. I guess that my biggest question regarding HD was always, if HD is a disease normally found in people 10-25 years old, why do I have it? I am a 55 year old caucasian male who first got the disease at age 41.

The very best of luck to you and "Livingwith". May God bless you and keep watch over you and your daughters.

bdc

[pink1]

hi.
Let me start by saying i sincerely hope things are going well for your daughter.
I was diagnosed with stage 2 Hodgkins lymphoma when i was 17 back in Oct 1990. I was given 6 months chemo and 4 weeks radiation.
I had been going to my GP with a lump in my neck/collarbone for 6 months before they took me seriously and refferred me to a surgeon.
He examined the area and told me and my mum that it was just a cyst and they could remove it if i wanted but it was an unnecessary operation!
Well, my mum said not to go under the knife if i didn't have to but i wanted it taking out.Besides,it would get me a few weeks off work!
The lump was removed and 5 days later we were sat in a room in the hospital and were told(not by the surgeon-he was nowhere in sight) that i had hodgkins lymphoma.
Atre a full bodt CT scan i was told it had also apread to my chest.Maybe if i'd been taken sreiously in the first place it may have been contained to just my neck.

Anyway,17 yrs on,i've had no recurrence up to now but 6 yrs ago,was contacted by the hospital to say that the type of radiation given to treat HD now puts me at very high risk of developing breast cancer.
Also i now have a higher risk of lung cancer and heart problems,again,both due to the treatment.I also now have an underactive thyroid from the treatment.

Fortunatly i have annual breast screening in the form of MRI scan,Mammogram and ultrasound.My birth mother(i'm adopted)also had BC aged 37 so this adds to my risk.

I'm currently awaiting referral to the Family History clinic to assess my risk percentage fully and to find out about having both of my breasts removed as prevention.

I was shocked at how many people had recurrence of HD.My hub says i shouldn't read things like this on the net cus it scares me!! He's right but i cant help it!

I just wanted to give some positive feedback that not everybody who's had HD gets it again (touch wood!).

Good luck to your duaghter and yourselves.My heart goes out to you as i have an 11 yr old daughter myself.