Non-Hodgkin's Lymphoma

ricejf1

I am a 6 yr. survivor of Non-Hodgkin's Large B Cell Lymphoma, I would love to hear from anyone who has or has had this type of cancer.

afoto

It has been almost 2 years since I was diagnosed with Non-Hodgkin's Lymphoma. It was a year ago this past December that I had my last Chemo treatment. I don't know what Large B Cell is. I had a huge mass in my chest. I had gone for a routine physical check-up and they found the mass with a chest exray. They told me that this mass was doubling in size every 45 days. By the time I was put in the hospital with a collapsed lung due to the fluid building up in my lung, I was pretty sick. It seemed to just happen. GOD has been so good to me. I am just fine now. How are you doing? Do you ever worry about it returning? I have to go for my annual CT Scans soon. I hate it because I always fear the worst. Do you feel that way too?

ricejf1

afoto said:

It has been almost 2 years since I was diagnosed with Non-Hodgkin's Lymphoma. It was a year ago this past December that I had my last Chemo treatment. I don't know what Large B Cell is. I had a huge mass in my chest. I had gone for a routine physical check-up and they found the mass with a chest exray. They told me that this mass was doubling in size every 45 days. By the time I was put in the hospital with a collapsed lung due to the fluid building up in my lung, I was pretty sick. It seemed to just happen. GOD has been so good to me. I am just fine now. How are you doing? Do you ever worry about it returning? I have to go for my annual CT Scans soon. I hate it because I always fear the worst. Do you feel that way too?

I understand completely your fears of it returning, but I must say it does lessen as
time goes on. My lump was in my neck and I
check it daily to make sure everything is OK.
When I have a weird pain I worry that it's something bad I think that's something that we'll always live with, but that's OK it keeps us on our toes so we're much more aware of our bodies. I'm doing great and try to keep my stress level down, I really feel that stress contributed to my cancer in the first place. It was wonderful to hear from you and I'd love to keep in touch.

Sincerely,
Jeanine

rllk

I have stage IV-A small lymphocytic lymphona. I have been in remission for a little over four years after eight months of chemotherapy. I am interested in connecting with another NonHodgkins survivor.

marypax

Going on four years (and counting) cancer free this July!!!!!..Stage II Follicular, small cleaved cell NHL.

katlyn

ricejf1 said:

I understand completely your fears of it returning, but I must say it does lessen as
time goes on. My lump was in my neck and I
check it daily to make sure everything is OK.
When I have a weird pain I worry that it's something bad I think that's something that we'll always live with, but that's OK it keeps us on our toes so we're much more aware of our bodies. I'm doing great and try to keep my stress level down, I really feel that stress contributed to my cancer in the first place. It was wonderful to hear from you and I'd love to keep in touch.

Sincerely,
Jeanine

I am afraid of it coming back. I just went to the Dr. yesterday because of a growth somewhere else. It amounted to nothing. I had my cancer in 1995 also. I would love to talk to you sometime.

katlyn

ricejf1 said:

I understand completely your fears of it returning, but I must say it does lessen as
time goes on. My lump was in my neck and I
check it daily to make sure everything is OK.
When I have a weird pain I worry that it's something bad I think that's something that we'll always live with, but that's OK it keeps us on our toes so we're much more aware of our bodies. I'm doing great and try to keep my stress level down, I really feel that stress contributed to my cancer in the first place. It was wonderful to hear from you and I'd love to keep in touch.

Sincerely,
Jeanine

I am afraid of it coming back. I just went to the Dr. yesterday because of a growth somewhere else. It amounted to nothing. I had my cancer in 1995 also. I would love to talk to you sometime.

katlyn

ricejf1 said:

I understand completely your fears of it returning, but I must say it does lessen as
time goes on. My lump was in my neck and I
check it daily to make sure everything is OK.
When I have a weird pain I worry that it's something bad I think that's something that we'll always live with, but that's OK it keeps us on our toes so we're much more aware of our bodies. I'm doing great and try to keep my stress level down, I really feel that stress contributed to my cancer in the first place. It was wonderful to hear from you and I'd love to keep in touch.

Sincerely,
Jeanine

I am afraid of it coming back. I just went to the Dr. yesterday because of a growth somewhere else. It amounted to nothing. I had my cancer in 1995 also. I would love to talk to you sometime.

smileyfly

My last round of chemo and radiation therapy for Stage I-IIE Non-Hodgkin's Large B Cell Lymphoma three years and I am now happy to have a head full of hair flowing down my back! I was diagnosed at 19 during my sophomore year in college, a little young considering this disease is typically seen much later in life. But now I am relatively "perfect" and in my first year of medical school. I would love to hear from other NHL survivors, especially those close to my age (23).

RevBob

I had B-cell follicular NHL. I went through two rounds of Rituxan (eight weekly IV sessions) and four rounds of Flodirabin (sp?)with five days of IV then off for twenty-one days. I just finished my fourth round last week and I am so weak. How long does it take for some strength to come back? I have worked through the whole treatment except for last week and this week.

railroad

My Mom has follicular lymphoma and is doing chemo now.She has has it for about a year.She's 75 and it's encouraging to know that other people are living quality lives for long periods of time.I hope she has as much success as you seem to be having.She's taking fludarabine and mitoxantrone.

stronglikebull

I am a 9 yr. survivor of NHL w/three recurrences. I've had chemo C.H.O.P., high-dose chemo and two rounds of Rituxan. I'm one of the lucky ones. I tolerate the medicines well and my cancer responds well to treatment. I have been able to work throughout(hence the name stronglikebull). Stay positive, follow your doctor's treatment regimen and ask questions!! Bring a spouse or loved one to ask questions too(they may think of some that you did not think of). Eat what you can and take a walk to keep your spirits up and just to view the beauty of nature.

rocky5

stronglikebull said:

I am a 9 yr. survivor of NHL w/three recurrences. I've had chemo C.H.O.P., high-dose chemo and two rounds of Rituxan. I'm one of the lucky ones. I tolerate the medicines well and my cancer responds well to treatment. I have been able to work throughout(hence the name stronglikebull). Stay positive, follow your doctor's treatment regimen and ask questions!! Bring a spouse or loved one to ask questions too(they may think of some that you did not think of). Eat what you can and take a walk to keep your spirits up and just to view the beauty of nature.

hi, I was wondering what type of NHL you had? And waht stage was it diagnosed?

rocky5

stronglikebull said:

I am a 9 yr. survivor of NHL w/three recurrences. I've had chemo C.H.O.P., high-dose chemo and two rounds of Rituxan. I'm one of the lucky ones. I tolerate the medicines well and my cancer responds well to treatment. I have been able to work throughout(hence the name stronglikebull). Stay positive, follow your doctor's treatment regimen and ask questions!! Bring a spouse or loved one to ask questions too(they may think of some that you did not think of). Eat what you can and take a walk to keep your spirits up and just to view the beauty of nature.

StronglikeBull15....how old are you? and congratulations on your great success!

rocky5

stronglikebull said:

I am a 9 yr. survivor of NHL w/three recurrences. I've had chemo C.H.O.P., high-dose chemo and two rounds of Rituxan. I'm one of the lucky ones. I tolerate the medicines well and my cancer responds well to treatment. I have been able to work throughout(hence the name stronglikebull). Stay positive, follow your doctor's treatment regimen and ask questions!! Bring a spouse or loved one to ask questions too(they may think of some that you did not think of). Eat what you can and take a walk to keep your spirits up and just to view the beauty of nature.

My dad just went for his first CT scan after 4 treatments, and the reports said that everything was "UNREMARKABLE" they said the mass in the stomach was reduced and the stomach wall was only mildly inflamed. Did anyone get good news like this and then after chemo have the cancer (Large B-cell Lymphoma) return shortly after getting off the chemo? Thanks to all your replies....and congratulations to every survivor!

cure100

smileyfly said:

My last round of chemo and radiation therapy for Stage I-IIE Non-Hodgkin's Large B Cell Lymphoma three years and I am now happy to have a head full of hair flowing down my back! I was diagnosed at 19 during my sophomore year in college, a little young considering this disease is typically seen much later in life. But now I am relatively "perfect" and in my first year of medical school. I would love to hear from other NHL survivors, especially those close to my age (23).

Hi Smileyfly
My daughtre just diagnosed @ 18 with Anaplastic large cell Lymphoma stageII. She's currently getting chemo. She is taking it for about 2 months. She is also going to medical school. I wonder how are you doing, considering the stage of your disease that is very similar to my daughter? Have you had any replase since you were diagnosed? My daughter is very nervous and depressed.She needs to talk to someone with a situation just like her.

QO

rocky5 said:

My dad just went for his first CT scan after 4 treatments, and the reports said that everything was "UNREMARKABLE" they said the mass in the stomach was reduced and the stomach wall was only mildly inflamed. Did anyone get good news like this and then after chemo have the cancer (Large B-cell Lymphoma) return shortly after getting off the chemo? Thanks to all your replies....and congratulations to every survivor!

Newly Diagnosed
Im 26 and I have just been diagnosed with SLL and Doc told me to wait and see what happens? I dont understand how not treating it can be better then doing something. Has anyone ran into this before? Ive read that life expectancy is 5 years, doesnt seem like a lot of time to wait and see.

anliperez915

QO said:

Newly Diagnosed
Im 26 and I have just been diagnosed with SLL and Doc told me to wait and see what happens? I dont understand how not treating it can be better then doing something. Has anyone ran into this before? Ive read that life expectancy is 5 years, doesnt seem like a lot of time to wait and see.

Hi QO
Hi QO,
Sorry that you have to be here but welcome to the group,
I also had to wait for 5 mo. before starting treatment and I just couldn't understand why I had to wait (and still don't). I did get a second opinion and stayed with that Onc he started Rituxan treatment right away so far I've done 2 rounds of Rituxan, one done in Feb. and then in Aug. will have more test done this following week to check where I am. I would recommend getting a second opinion and go from there. Please let us know how everything works out for you, Take care

Sincerely,
Liz

1ladydiamond

QO said:

Newly Diagnosed
Im 26 and I have just been diagnosed with SLL and Doc told me to wait and see what happens? I dont understand how not treating it can be better then doing something. Has anyone ran into this before? Ive read that life expectancy is 5 years, doesnt seem like a lot of time to wait and see.

Please read
Small lymphocytic lymphoma (SLL), is a type of non-Hodgkin lymphoma characterized by an excess of white blood cells in the lymph nodes. When cancer cells are found in the blood and bone marrow the disease is called chronic lymphocytic leukemia (CLL).

As a lymphoma, SLL accounts for about 4-5% of non-Hodgkin's lymphoma. As a leukemia, CLL accounts for about 30% of adult leukemias in Western countries. In SLL the patients are elderly (median age 60 years) and usually present with diffuse lymphadenopathy and some degree of marrow and peripheral blood involvement (Stage IV disease). Men appear to get the disease as equally as women.

Small lymphocytic lymphoma is very indolent but relentless, with median survivals of almost a decade. Although the slowly proliferating cells are sensitive to chemotherapeutic agents, chemotherapy is almost never curative and relapse inevitably follows.

Most studies find no benefit in treating patients until they develop symptoms. Therapy tends to be low-intensity: single alkylator therapy such as chlorambucil or combination therapy with cyclophosphamide/vincristine/prednisone. A new and promising drug is fludarabine, but it has not been shown to prolong survival so far.
.

High dose chemotherapy with bone marrow or stem cell transplant has been used to treat a small number of people with SLL / CLL. As side effects can be severe, some type of transplant are not given to people over the age of 45-50 and others can be given to people up to 65 years old who are in otherwise good health. The intensity of the treatment increases the risks of serious side effects for people over this age.

About 30% of cases of SLL progress to a higher grade process such as prolymphocytic lymphoma or diffuse large cell lymphoma (Richter's syndrome). Over time, 10% to 20% of cases of small lymphocytic lymphoma progress to chronic lymphocytic leukemia.

1ladydiamond

QO said:

Newly Diagnosed
Im 26 and I have just been diagnosed with SLL and Doc told me to wait and see what happens? I dont understand how not treating it can be better then doing something. Has anyone ran into this before? Ive read that life expectancy is 5 years, doesnt seem like a lot of time to wait and see.

Hi
Hi I am a 51 yr old female who was diagnosed in April of this year 2012 with Follicular b cell lymphoma stage 4 I will never be out of stage four and it is slow moving as well as yours. I also have a 50% chance of developing a more aggressive cancer I am dealing with the fact that i have it and I keep a journal and I had to fight to get a bone marrow test which showed i was in the 4th stage my doctor thought I was in the 1 or 2nd and wanted to wait and watch Not happening they say i am in remission but remission for us is that it is still there but scaled back i am still in stage 4 and he wanted my doc to watch and wait i said no way so i do treatments every 2 mths for now and i will get another pet scan in about two months to see what is happening that watch and wait don't do it. Fight it now head on get treatment and it will push it back some i posted information on it. I know it is scary it is surreal for me still at this moment. I am tired alot Steriods were given and still are because of the bad reactions i have during treatment I take Rituxan and it has side effect it effects the valves of your heart and also joints etc sleepless nights and major hot flashes it is crazy this is my email first_ladydiamond at yahoo if you would like to talk more wishing you the best
Trisha

Folks24

I also have the same type
I also have the same type cancer. I also have Sjogrens. I finished my 6th chemo treatment and got a clean PET scan though oncologist said not "cured" as I could have lymphoma cells the PET can't detect.
I am now taking a series of 4 methotrexate shots weekly in the spine to help prevent the lymphoma from getting in the central nervous system. I did get bad nausea and headache from the shot but I got some fluids which helped and they are having me drink & eat a lot that has caffeine in it. That is supposed to help the nausea /headaches and it seems to be working so far.
I had some downs with the chemo symptoms "once landed in hospital" but got through it. I'm solo so no family around. It is a long road to haul but you get through it.