Information overload for newly diagnosed

Hi everybody. As everyone knows in this forum, when you first find out about Hodgkin’s Lymphoma, most of us try to read anything and everything we can. A lot out there on the web is not helpful. This forum and a few sites have helped me get my brain in the right frame of mind. Thank you.

I came across this information site the other day and wanted to pass it along if it could help anyone else at this point.

http://www.cancer.gov/cancertopics/wyntk/hodgkin

Our second opinion came back Thursday and it is official that my son has HL. We have our first appointment with our hematologist/Oncologist Tuesday, Oct 5th. Everyone says things are moving fast for us. Not fast enough for me.

I do have a question? I know that every treatment is different, but what is the typical time frame for treatment for HL? Thanks

It's going to depend on what stage he's in. It can be anywhere from 2 months to 8 months, I believe, with chemo. Then radiation could come after that. You'll get a better time frame once you know what stage it's in.

I hope to know more Tuesday. I was just trying to plan for what is ahead of us. Life seems so crewel at times. He is only 21 and was just excepted for a job of his dreams opening up in January. He has worked so hard during the training and exams required… and now this. He is so focused and his attitude is good. I hope it goes well for him. Thanks again.

I wish you guys the best with that. I was diagnosed with enlarged lymph nodes in July. I had a mediastinoscopy done and CT/PET scans done and everything came back benign with that. I'm having a lot of itching though lately. It's scary. Also, like I can feel in my chest that the nodes are there where before I never knew they were there until I started having chest pains in July and 3 days later I decided to finally go to the ER where they first thought it was valley fever. Other diagnoses were also brought up as possible things that it could've been. :'(. Please be strong for him!!!

I hope you find out what is hurting you. Keeping asking until you find the truth. Thanks for your encouragement. We will know more tomorrow and can begin what we need to do. The waiting is the hardest part. Thanks again.

This is so true. I was recently diagnosed on 8/5/10 Stage II Type A, and when they first were "suspicious" of Hodgkins, I went to the internet and it freaked me out.
My Dr. was so patient with all my questions and really was thorough too. Listen to your/his dr., not the web. He or she will be there for you and can guide you and your son through this. With Stage II A my treatment is 4 months of chemo (chemo every other week) and then radiation. They do scans after chemo to see how I am progressing and that will decide on how long radiation could be (2 1/2 weeks to 4 weeks). You will definitley need to know what stage before they can give you treatment.
I am going into my 5th treatment of ABVD chemo this Wednesday and will say that for me, the treatment has been a little rough but by the end of the week, I feel better.
Take a deep breath, and it will be OK. God Bless you and your son. Oh and get a calendar and start crossing off the days to the end of treatment. It will all be in the rear view mirror before you know it. Positivity is the best prescription, take it every day.

Thanks for your info. It helps me to know a little of what to expect. I have heard some say that they have not had any effects, which really surprises me because those treatments seem to be so strong. My son has agreed to come back home for a while until his treatments are over. I think the reality of it all is starting to set in. We will keep our positive attitude. I truly believe that that is an important medication too. I hope you are doing well. I will keep you in our prayers. Thanks again for your information. Every little bit helps.

raylabo,
Thank you for the link, I'll check it out. I have about 3 lumps on the left side of my neck. I've been playing the waiting game since August, had to wait a month to see an ENT specialist and he did a needle biopsy in his office, the results are due back today. I've been hearing that the fine needle biopsy isn't always accurate, I'd rather have the lump taken out and biopsied. I've seen so far on this site that a PET scan, MUGA scan and a bone marrow biopsy is usually the way they stage the cancer. I have a question for someone who has gone thru all this: Do they usually take all the lumps out, or does the chemo shrink them? So good to talk to other people who are going thru the same thing, it's very supportive and comforting.

pumpkin1959:

I had a needle biopsy which wasn't conclusive. The only reliable method is taking the lymph node out - and they only need one for that. The rest of them shrink. I had an egg-sized lump in my neck, and it began shrinking immediately after I started chemo. After 2 cycles, I can only barely feel it with my fingers. I can assume the mediastinal lumps are shrinking too. I was told that taking them out is really not an option in most people's cases. It would require cutting the ribcage open and that's just too complicated.

Hannah,
Thank you for your reply. That is good to hear and I’m glad that your lumps are shrinking! I’m still waiting to hear back about my results, they said the results from the fine needle biopsy are in and they are waiting to hear what the doctor wants to do next. They didn’t tell me one way or the other so I’m playing the waiting game for a bit longer!