Hello! My name is Jennifer and I am a 38 yr. young w-female that was recently diagnosed with NHL+.... The name of this discussion is my actual diagnosis. I am NOT really understanding this diagnosis. My oncologist has not really been able to explain the diagnosis where I can understand him. It's not that he is foreign and I can not understand him that way. I just do not understand what it is that I have and it is really starting to scare me as I do know that it is spreading and it is spreading fast and aggressively. I would really like to know if anyone has been diagnosed with this type of Lymphoma and went through any of the treatment for it??? Also, does ANYONE know what ALK is??? I would appreciate ANYresponses as soon as possible and you may even E-Mail me the response to really keep it private if you like...E-MAIL:email@example.comView Thread
hi im craig and im 25 years old. two years ago i was working an extraordinary amount of working hours and my wife was prego. at one point i was so exhausted that i was having trouble staying awake on the days i did have off, but i attributed that to the work...then all of a sudden i started to get sick very easily..then i started to get chest pains....pains so bad it would stop me in my tracks...so i went to the doc for that..he said muscle spasm or strain...then he got my bloodwork and said that the counts were so bad he wanted to get another test. when i got the second one back he immediatly called me in to get an x ray....when the x ray revealed that i had swollen lymph nodes everywhere and that i started to develop cysts all over my torso and mid section(some so big they needed surgery) he called me after further review and me losing 30 lbs that he thought " 99% sure its lymphoma." i said ok whats next. meanwhile i am getting night sweats and have lymph nodes in my neck and armpit so large they are protruding from my skin. i went to oncologist and got PET scan and it showed up negative....so they told me to watch and wait. so two years went by with the same results except that i havent gotten a pet scan since ( expensive) when i go to my doctors they all say that they think its lymphoma but its too small to biopsy. 2 months ago i started to cough so bad that i started to cough up blood. but no other symptoms. went to ER and he took chest x ray. he brought me in his office and said i had what looked like early stage of lymphoma. yet when i go to my normal doctor, he says that its just clogged bronchials and that i should just wait.. well since then i havent NOT been sick.. ive had skin irritations all over me and havent stopped coughing since... and im constantly nasally......i KNOW i sound like a giant run on sentence and that i am complaining...but honestly i am just so tired of bein sick and just need some direction....anyone?View Thread
I chose not to buy a wig, it was my call. My husband/family didn't mind my going hairless/bald and I was very comfortable doing so; It was also much cooler this Summer. Since I just completed my final chemo, I'm still very bald, love my scarfs and caps!
It's a personal choice, you have to be comfortable with yourself. I hope no matter what you decide, you hold your head up high, look everyone in the eye, smile and let them know you are beautiful with or without hair!
Remember, this is just a brief Road Trip in your life and like all Road Trips there are a few detours but you will make it to your final destination and all will be Well!
Take care Everyone and May God Bless Us All; Past Present and Future NHL patients/survivors View Thread
I was given a couple of wigs, one of which was quite pretty. But it wasn't me and frankly, those things are scratchy and uncomfortable. Talking to other women, I found out that they can cause scalp problems that take a while without the wigs to heal.
I was never quite sure what was the reason for hiding a bald head, anyway. I'm not the possessor of the world's most beautifully shaped head, but so what? I wasn't embarrassed to be fighting cancer, either. I think it's an excellent chance to help other people to understand about it. I found that when I went around bald, people were more likely to ask me if I was getting chemo, and when I smiled and told them yes, they felt more free to ask about the effects of it. So many people have heard that there's nothing worse than chemo and radiation, they're afraid to have their cancers treated when they have it. I try to talk to as many people about that as I can. I didn't find my N-H lymphoma until stage 4 (common, I think), but I can't think of anything more worthwhile that the treatment--including a stem-cell transplant. So, no wigs for me. Janie704View Thread
Finally! Again for the second time, I'm in remission. The endoscopy report stated, " No sign of cancer cells." I got a congratulations and now am looking forward to getting the bill.
I can't wait to get on with life, again. It's finally sunk in - no more chemo. The treatment made me feel worse than I actually did. I could deal with the pain, do everyday, but being sick from drugs is another situation.
So, come on hair. Get growing. I want to shave my legs again and underarms. LOL! I want to go to my stylist, when my now totally grey hair finally grows. Get in shape again. Yeah, yeah. Never really was.
Life feels different. Things that used to be important to me, arent. So what if the car isn't washed, house isn't cleaned everyday? Who cares if the neighbors are having a knock-down drag-out. As long as there's not any blood.....
I want to watch my Grandchildren grow up. I have two and they mean everything to me. I know they would forget me if I died. But that's just it. I don't want to, not yet. Who would love my grandson, Johnny as much as I do? I know if I died, his little life would be so different than it is now. Who would he have to talk to about his little problems? Who??
I want to grow "older" with my husband, my hero, my knight, my rock. Sometimes, when I can't sleep, I listen to his breathing and I think about how his life would be if I died. My heart literally breaks. Our daughters wouldn't come around much. Heck, they don't anyway. Not since lymphoma. I can't think about it.
Yup, life means so much. When people talk about taking theirs and how much better everyone would be, I want to slap them. And tell them how wrong they are.
Each day is a blessing. I know that I can fall out of remission at anytime. It happened before. It can happen again. Nothing's a given. But I know that if that happens, at least I had this time of being happy. Without cancer. Living, loving life and praying.
If anyone does read this. My prayers are with you. I hope if you or a family member or friend stays with whatever treatment you have.
Ok- so I am 24 and was having some abdominal pain and constipation that I thought may be related to my anxiety/panic disorder. I went to a gastro and had a CT of the abdomen and a colonoscopy and endo...(where they put a camera down your throat).
Everything was normal except for some lymph nodes that were enlarged that showed up on a ct. The lymphs that were enlarged were 1cm or less in the abdomen.
I have no symptoms of lymphoma but I did have a fever for about 24 hours a month ago (on Easter!!) and sometimes I get a little hot at night and sweat but it does not last the entire night and does not dampen my sheets. I don't know if that is just me being hot (which I normally always am or a "night sweat")
I just don't know what to think- I've had all of these tests and no one has told me anything. The doctor said he doesn't think it is lymphoma but can not tell for sure. The lymphs are too small to biopsy. I also just had a chest ct but havn't heard back yet from the hematologist. I am so scared it is cancer. I just feel all alone in this- no one seems to be willing to give me any hope or information...
My uncle has been treated for Lymphoma for the past ten years, but over the last several months he has become increasingly more confused. He has undergone blood tests and an MRI and nothing was noted that would indicate that his lymphoma had spread to his brain. Starting this past week he gets in the car and forgets where he's going. He repeats himself constantly. He just came from an appointment at UCSF where we hoped we'd get a diagnosis and the only thing that they could assure us was that his problems are not mental or memory related. His blood chemical levels are all over the place and we can't get an explanation as to whether or not this is causing his diminished mental capacity or is a result of it. Please if anyone has experience with this scenario, we could really use the help. Thank you.View Thread
I hope this board will help many. I lost my brother in law to this,in 1996. He was undiagnosed for too long. More is known now, and this little corner of the boards exchange will just help with that knowledge I know. I don't see how you dou do all this with CFIDS to boot. I have been down with a flare for the past 3 days, first day up, for how long I don't know. Your in My thoughts and Prayers for not having to do the last 4 treatments.
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