I was looking to find someone who has been treated or is being treated. I have B cell type an it is aggressive type.
I was looking to find someone who has been treated or is being treated. I have B cell type an it is aggressive type.
Hey Vicki, I was diagnosed with agressive Large Diffuse B cell lymphoma last March. What is it you need to know? I had 6 rounds of CHOP plus Rituxin, and have been in remission since July 07. Tell me all about yourself!
Hi Vicki, I too had Follicular B Cell NHL, with 6 rounds of CHOP/Rituxin and 20 rounds of radiation. I had a 6" long x 2 1/2" diameter tumor on my spine and I have been in remission since Feb 25, 2005. Rituxin is a miracle drug in my eyes - even tho it caused me pain while going thru treatment, it was because it was killing the tumor so to feel it working was a blessing. Please, let us know what is going on with you! I don't get on as much as I'd like because of work/family, but as Hummer55 says, we'd like to hear more about you. I know that everyone who monitors this who has walked in your shoes (and even those who haven't) would be more than willing to share their experiences, thoughts, etc to help make things easier for you. In the meantime, I'll keep you in my prayers!
Hi Vicky,
I was dx 8/07 with a diffuse large B cell lymphoma (t-cell hystocite rich). Mine was the aggressive, bulky type disease because of tumor size and broadcast locations (stage 3). I had 8 rounds of R-CHOP but didn't have to do radiation due to disease being too broadcast. I agree with Nemom on the Rituxan. It is a miracle drug. I've been in remission since 2/08. There are also other meds to help you through chemo. I did great through it and can give you some meds that worked for me if you'd like. Getting through the initial diagnosis and testing takes time but hang in there and go into treatment like a lion. Just having a "cancer" diagnosis is scarry but the treatments and medications available to us now are so vast. More and more people are living longer and fuller lives. Some folks from my support group were in pretty bad situations and we have many who have been in remission for several years! Keep your chin up and stay informed. Knowledge and preparedness is your best weapon as well as staying positive. Here are some websites that I'd like to pass along to you. You can find lots of information here. Please keep in touch. As the others said we'd love to hear from you and support you through your journey to remission.
websites:
www.nhlcyberfamily.org (my favorite by Greg Dafoe)
www.leukemia-lymphoma.org and
www.lymphomation.org
Prayers are with you,
Joy
Hi, so glad you all have take the time to ask about me and tell me about your experiences. R-chop has not helped shrink my lymphoma. I have a large and growing tumor in my throat. I just started Radiation and that seems to be helping. I no longer feel quiet as scared as I have. It is good to hear that there are so many people who are in remission it gives me real hope. Thanks for the web sites. I will keep you up to date thanks again all of you for your support. Vicky
Vicky, What kind of symptoms did you have? Is that the only location of the lymphoma? Where exactly is it located? Just curious, hope you don't mind me asking. Hang in there, Hummer
Hummer,
Don't mind you asking. My lymphoma is located in my neck, at first they thought I had thyroid cancer. After a CT scan they decided it was not. Then they did a biopsy and found that I had NHL. They also found a spot on my liver, biopsyed that and found that was a reocurance of breast cancer. This whole thing got started becouse I had a lump in my neck that kept growing. I also had this feeling that I had to swallow and clear my throat.
Hi Vicky,
Just touching base to see how you are doing. I pray your treatment is going well. Keep in touch.
Joy
I also have diffuse b cell lymphoma am right now am do radiation.. I had it in my tonsil and my neck.. the treatments have done a number on me.. I can't eat cause as the doctor said yesterday it looks like some put a hot poker in my mouth.. I think it coming from radiation but they seem to think it from stress.. I really can't get anyone to listen.. After the first treatment I toll them I was sick and my mouth was forming a foam that I thought was making me sick and all they said was that not possible.. I know am going to beat this but the pain is so hard to deal with.. Well thanks you listening and have a great day
Hey Mommyoftwo, Seems like the doctors definitely aren't listening to you. When I was having my chemo, the first couple of treatments, I was having like static noise in my left ear. I called the doctor and the chemo nurses said they would check with the doctor, but no one else had ever complained about that. It seems everyone is different, and the chemo affects them differently. I really didn't do anything about that because I could still hear out of it, it was annoying, but it was something I could put up with. You need to be a strong advocate for yourself, if something is bothering you or you have a symptom you haven't even had before speak up!! You aren't getting that treatment for free, the doctors are being paid for that, and it's your body, you are going through it. Find compassionate doctors, boy, that is a biggie. You need to find a doctor who is going to listen to you. Don't be afraid to find another doctor who goes well with your personality. I feel so badly now because we lost my dad to colon cancer it will be 3 years this December. His doctor was very cold. She never showed any compassion or sincerity for what he was going through. We kept her, my dad didn't want to change and go through all the testing again, but I am telling you now, it makes such a huge difference when you are going through something so scary as cancer. People had warned me after I started my dad with this woman she was like that, and that they had heard she was only interested in the money she was making, not her patients. Other doctors have heard it as well, as well as some of the chemo nurses. It isn't right. She would walk out so fast, we wouldn't get to ask her questions or anything, it was so sad. SPEAK UP ADVOCATE FOR YOURSELF!! I hope you get to feeling better. If we are going to beat cancer, we need to have normalcy in our lives while going through it. If we don't feel well, we aren't going to have a good quality of life, to take care of children, go to work, be a normal person taking care of their lives period. I hope you feel better, and you have a good week! Hummer
Dear Vicki:
I would never tell anyone to not take chemo. That is a personal choice. I chose not too. Doesn't it make some of you folks wonder why 73% to 75% of all Oncologist won't do it either. I have Stage IV Non-Hodgkins B-Cell Lymphoma in "ALL" my lymphnodes and over 40% Bone Marrow 5 years now. Mine is not the "real" aggressive kind but could become.
The FDA can say what they want to about Alternatives. To them and the pharmaceuticals it's all about the money. Just look "how many times the "FDA" has been wrong about many of the very Drugs they have okayed. They also have killed hundreds of thousand of people with these very drugs. The truth "also" is they don't "CURE" Cancer either. We all have Cancer cells in our bodies, but it is the "Immune System" that cures it.
A lot of these natural products you have to take with a grain of salt I grant you, but a lot of these products will strengthen your Immune System. None of us use any commonsense until we get sick or at least see someone we love fight for their lives. Then we might wake up and start thinking about our own health.
I do a lot of supplements myself and have no regrets on the money I have spent. It has been a whole lot cheaper than chemo and radiation and my quality of life has never been better. I still work full-time. I take no medication of any kind and Lord willing I will see all 5 of my grandkids grown and my 1st great Grand child next April 2009. I don't say any of this to discourage anyone, but to hopefully encourage others to take charge of their own and use Conventional Doctors when absolutely necessary. Doctors don't cure anything. They only "diagnose" and "Treat" the symptoms.
I am not a Doctor, but I would recommend "Essiac Tea" to anyone. I have given a list of the things I have been doing to my Oncologist (who I just see for Blood Work every 6 months) I have given him this information 3 times. When I was first diagnosed and refused Chemo he told my wife and I that he had only seen 2 people go the route I was going and that they were miserable failures. After coming up a protocol for myself I let them Scan me and do Blood work 4 months later. My oncologist came into the room reading all the results shaking his head. He said" Dale, I don't know what you done, but you have stabilized this." I had to bite my tongue. I wanted to say so bad that it wasn't chemo was it sir, but I respect him and kept my mouth shut. I haven't looked back.
And I don't care what anyone says on this forum about using sugar, I would avoid it like the plague. Cancer cells feed on sugar because they are aneorobic cells and need the quick energy. That is why they use it in Petscan and CT scans. Cancer cells uptake the Glucose (a simple sugar) 15 times faster than Normal Cells.
I realize I am blessed beyond measure and don't take my cancer lightly, but I am also a child of God and have a peace about this. Win or Lose I still win. In the end that is "ALL" that matters anyway folks. I wish everyone on these forums well. Take care Vicki.
Sincerely,
Dale
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