Looking for people with stage four lymphoma

On Nov 10, 2010 7:48 PM alexamilano wrote:

hi Cindy , my name is Alexa, I just started my treatment for Stage 4 folicllar lymphoma. My dr. started me on the RCVP , I heard its supposed to be one of the best treatments. I'm 31 & scared too. I had my first chemo last Thurs & so far so good.I feel tired & my mouth hurts a little. I dont know much but I also want to read about people who have my disease. :)

Hi Alexa my name is amedeo im 34 and i also have Stage 4 folicllar lymphoma. they found it in september. I would like to knw how ur doin since u started treatment?

Cyndi i have had this 3 times..First time when i 35 and im now 57..Radiation 1st time, 2nd time 5 yrs later chop, and 3 yrs ago after being clean for 14 yrs I chose to have Bexxar which is like Zevalin but I heard it's better..I was my one doctor to find someone certified to give it and i did at Baylor Medical Hospital in Dallas..It was so easy..I got a test dose on Friday and then scan's during the week and the big dose the next Friday and only felt bad a couple of week's and didn't lose my hair..I am still clean from this..It's mouse protein followerd by a tracer..

On Apr 20, 2010 3:45 PM katheee wrote:

i have nhl stage 4b..with bone marrow metastasis...now its in my liver....i understand how you feel...when it went to my liver i interventional radiology do a fine needle biopsy of which is malignant nhl...they have to treat the primary cancer first and then the secondary which i believe is the liver...im sure you have had the chop treatment but let me tell you rituxan is great!!! it put me in check for 5 years...and the rituxan doesnt make you sick at all!  give it a try...im assuming your original cancer is nhl as mine is...mine is stage 4b and that was upon origial diagnosis!  we can do it ...yes you can!!!

 

let me know how your doing...i care!

 

katheee

hi kathee,,my name is joy and i was diagnosed feb this yr with nhl follicular  stage 4 ,with bone marrow inv,. had 6 rchop now on 2 yrs maintenance with rituximub.i spend every day worrying its coming back. i try and try to stop doing this ,but am so worried .i amterrified of my ffuture ,i want to be with my family for a very long time and this diesese is trying totake this away .xx

Hi , I have Follicular NHL stage 4 with bone marrow involvment. Did 8 rounds of R-Chop and did Zevalin. I also have been on blood thinners since I was 30. You have to ask her dr about any of the vitamins. Because everything interferes with it. So pleas do that.

I do my first 6 month scan Feb 3. So will be wondering. I wish your Mom well. I am 66. Would love to chat with your Mom. I have had mine since 04. Hilde

hi hilde,i am very happy to read u have had yours 8yrs you have done so well,i am only a yr in with stage4 nhl and very scaredxx

Hi Wendy,

I just did my cat scan today and wont know anything till next week.  You can beat this , and dont be scared. I was scared at first but I gave it over to the Lord and I will tell you it has helped.  I have had radiation in 04 and 8 rounds of R-Chop  in 09. Many bone marrow tests. It was in my bone marrow. But I just did what I had to do.You will be ok. Hope to hear from you again. And do not be scared. Hugs to you , Hilde

thankyouxx

On Jul 24, 2002 12:00 AM cyndi_k wrote:

Hello, my name is Cyndi and I was told in Sept. 1999 that I have Lymphoma. I'm looking for someone who has been thru some of the new treatments they have out. One of the treatments I am interested in is Zevalin. Sometimes I feel like no one is out there. I have follicular small cleaved cell lymphoma, stage four. Just looking for someone to talk to that has the same type of cancer.

I have stage 4 lymphoma.  Have been thru a year of retuxmab treatment.  Was absolutely misrable, lost 30 lbs, no energy, no strength, metallac taste in mouth, nausa.  A dietician prescribed supplements.  Lost metal taste, nausa, appetite returned.  I am going on to naltraxon treatment now to avoid more chemo.

Hello,

I have follicular NHL stage 4 since 04. Did Radiation, surgery and then was good for one week away from 5 years. Then it was in my bone marrow. Did 8 rounds R-Chop. and then was advised to do Zevalin. It really was hard to make that decision but I did it. December 23,09 and have been in remission since then. After the Zevalin your blood work just drops. I have never totally recovered the blood work like my wbc. But it is 3.6wbc. Platelets are 120. But maybe it never will recover but aside from being tired a lot of time. Hope this helps some. Hilde

Hi Kathee,  My name is Nancy, I was diagnosed this past May with stage 4 follicular lymphoma and was really shocked because my husband was diagnosed the of March with colon cancer so it was a double wammy for us. I also had the rchop treatment and will have my last treatment the end of this month, the 26th and the 27th. How was the retuxin maintenance with you?  It is a scary thing to think about what we have but for me I don't dwell on it too much because I can't change a thing except to fight this the best way.  We don't know what our future holds, we could go out to the store and get killed in an accident, we just don't know. The fact that we know we have cancer is quite a challange for us. I to want to watch my grandchildren grow to adulthood and my great grandaughter who will be 2yrs old this Feb. I myself have great faith in God, so I let Him help me thru this.  I try to be positive for the most part and with the help of my friends and family they also help me to be positive.  Keep the faith Kathee and hang in there okay?  Keep in touch with me if you'd like.  Some of what I read seems hopeful, some people live many yrs with this and just maybe it will be you and me.  Take good care and let me know how the Rituxin worked for you, please!     hugs for you  ooooox x x x x x