Newly Diagnosed.

wishingonastar
wishingonastar Member Posts: 1
Hi, my name is Kaitlin and I am 18 years old. I was just diagnosed with Large B Cell Non hodgkins Lymphoma on Tuesday.

I am so new to this and I would appreciate it if anyone would be kind enough to help me learn what exactly I have and explain to me what I will have to go through in the near future. [doctors lingo is a little too hard for me to understand].

At this point in time, I am very calm but I think that is because I haven't let it sink in yet. I still am sitting here thinking, "me? have cancer? yeah right".

Plus, I was told by doctors that I am a rare case due to three reasons. First, I am young. Most people with NHL are a lot older. Second, I am a female. NHL affects more men then woment. And third, my brother also has this type of cancer. Which is supposively "remarkable" due to the chances being a trillion to one.

Comments

  • JACINDA
    JACINDA Member Posts: 6
    Hi my name is Jacinda, I am 29 years old and was diagnosed with stage 4B NHL on Dec 4 2007. I recieved 6 cycles of RCHOP which is a type of chemo I did really well with it. The type of treatment for you may be different depending on which stage you are in. This chat is really good in helping with questions you may have, so when they finally get the room fixed it will be great. Please know that NHL is a very treatable type of cancer so don't be scared. You can ask your doctors to explain anything for you and they will. I remember the day I was diagnosed I was so scared but take it from me you will be ok. If you wan't you can Email me and I will try to help you in anyway I can.
    Prayers to you and your family
    Keep your chin up
    ttys
  • faithfull
    faithfull Member Posts: 9
    hi there Wishing... my name is Jody and i agree 100% with Jacinda... i was diagnosed at the age of 33 with stage 2 Large B Cell NHL... went through 6 rounds of CHOP-R chemo and i had 17 radiation treatments also... all of it went very well... i am now going on 2 yrs remission! dont let this get you down... cancer is a very ugly word but if you keep a positive attitude things will work out just fine!! please keep in touch and let me know how things are going (thats if you would like to chat)... im here if you need someone to talk to!!
  • winthefight
    winthefight Member Posts: 162
    Hi Kaitlin, getting news like this is certainly not easy. I was diagnosed with NHL Sept 07. My stage at that time was 4B. It was Large Cell....B-cell T-cell enriched. I was very sick when first diagnoses but am doing so much better after the treatments. My treatmentst began with steroids. Steroids are a good thing!!! LOL. After the diagnosis, I had a series of tests, MUGA, PT/CT scans, a bone marrow biopsy (not everyone has this so don't worry). After the scans, my Chemo tretments began. I had no radiation treatments. I got a little queezy. But I never got sick. I never "lost my cookies". My story is similar to Jacinda (we are chat buddies). My chemo treatments were R-CHOP. I have had 7 of these treatments so far.

    After your initial scans, your Oncologist can determine what type of treatment should be assigned for your condition. When visiting your doctor, it is a good idea to have your questions ready prior to the visit. Ask questions, take notes. Ask the dr if it ok for you to use a tape recorder. Ask for a copy of all test results and ask for an explanation of the reports. This is a way for you and your family to track and understand what is going on. Treatments may make you tired. When it happens rest, rest, and get more rest. Immediately following chemo. It is important to drink the amount of fluids that your medical team specifies. You must "pee" the chemo out of your body.

    You mentioned you have a sibling that has NHL. I have heard of two sisters with the same diagnosis. I met the third sister who is being watched carefully. The two sisters are doing well and have been cancer free for 9 years. This cancer is treatable, so don't worry. You are going to be fine. Please don't hesitate to contact me with any questions. I'm on the main page or you can go to the Personal Web Pages, type in winthefight, send email.

    Keep your head up and your eyes on the prize which is to fight this.
  • utter2984
    utter2984 Member Posts: 1
    Hey Kaitlin, my name is Erika and I am 24 years old. I was diagnosed also with large b cell non hodgkins lymphoma on the 27th of Feb. I'm still pretty new to this too, I think I'm still waiting for it to sink in! So far with my experience being young has definitely been a plus, I hear that the reaction to the treatment isn't as bad compared to older people. I also have a rare case, my specific lymphoma is called follicular lymphoma which usually only happens to people in their 60's. Also, my grandmother had the same kind. They say it isn't genetic, but look at our cases. If you don't mind me asking how old is your brother and when was he diagnosed!
    I know you are going to hear a lot of people tell you that keeping a positive attitude is the most important thing! After a while it gets repetitive, but it's true. Just be positive and know that everything is going to be fine. At least we have a kind that is totally treatable right? You are the first person who I have talked to about this, that is going through the same thing! It's still kind of a strange concept, this only happens to people in the movies! If you ever want to talk you know where to find me! Erika
  • This comment has been removed by the Moderator
  • ConanLand
    ConanLand Member Posts: 2
    I was diagnosed with
    I was diagnosed with Non-Hodgkins (T-Cell) when I was 21 years old, on April 6, 2007. Strange coincidence in being diagnosed with NHL in this same week. My family doctor was diagnosed with NHL this same week in a different year as well. I am also a female and was in my third year of college when I was diagnosed. I would love to talk if you get this. You can email me on here if you can figure it out.
    Its amazing that your brother had the same thing. I felt so alone as a young, female in treatment at a pediatric hospital. I know where you are so feel free to email me.
  • patpen
    patpen Member Posts: 2
    newly diagnosed
    Hi Wishingonastar, my name is Pat I am 53, I was diagnosed with stage 4 Follicular Non Hodgkins Lymphoma on June 27, 2007. I had 6 rounds of chemo and now I am on remission, but still receive Rituximab every six months. The best advise I can give you is to really listen to your doctor, maybe have somebody go with you to your appointments and take notes, and carefully follow all the instructions you are given. During chemo I had no appetite at all, lost a lot of weight, now I wished I would have found out how to make better choices of food. Becuase of the lost weight I got very weak. So ask your doctor or treatment team for literature dealing wih nutrition. Keep a diary of how you feel each day, this would be a good way of getting your feelings out. I started a diary but it was several months after my diagnosis. Also prayer is very important and I asked for prayer from my friends and fellow church members. During my treamtment I was hospitalized three times, this was the most difficult time for me. I belive it was prayer that got me thru. God Bless you and above all DO NOT LOOSE HOPE!
  • hoping4acure
    hoping4acure Member Posts: 3
    You are going to be OK
    Hi, My name is Lisa and I am 38. I was diagnosed with large B cell non Hodgkins lymphoma on June 13, 2008. You have had heard the worst news and now you can start treatment. This is a very treatable cancer. I had a repeat PET scan after 2 rounds of chemo and my tumor (in my mediasinum-chest) was about 98% gone. See, you're going to be fine. Chemo really isn't as bad as I thought it was going to be. Yes, there are side affects. Yes, I lost my hair. But I only feel bad the night that I get the CHOP part of the chemo and by the next morning I am perking up. Everyone is different though. I agree with the one post. Drink lots of water after your treatment. I have had 4 chemo cycles thus far and have two to go, then follow up radiation. Rest when you need to but no amount of sleep fights the fatigue. I drag myself out for a walk with the dog or recently I have been going back to the gym. Diet and exercise are so important, take care of your body so it can fight. Best of Luck to you. I know you will be fine!