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ANY LYMPHOMA LATEST NEWS UPDATES?

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Can anybody fill me in on the latest indolent follicular lymphoma news. Every site I go to gives different info. I know they have come a long way in the past few years, but its hard to tell just how far when you are new to the site as I am. I was diagnosed stage 4 recently, but from what I read that is not a death sentence any longer. At least I hope not. most of my tumors are in my abdomen (largest 5cm).I have read the type of lymphoma I have is more of of chronic disease in this day and age. Some sites say they are making strides every day and others say it is a very slow progress in any new break thrus. I figure people that are in the same boat I am in may have a little more insight than I have. I start r-chop in a couple of weeks. Any help would be appreciated. thanks, john

cookingirl's picture
cookingirl
Posts: 183
Joined: May 2010

John - after 9 months of watchful waiting, my stage 4, B cell follicular indolent moved two weeks ago. My 4.2 abdomen tumor suddenly grew to 12 cm, and it was time for CFP-R. Did two days of that last Wed. and Thurs. NO nausea - my oncologist likes to take it slowly with Rituxan going in 4 hours two days to prevent side effects and it worked. Only one is I'm completely wiped out from fatigue. Was an energizer bunny at age 67 for 18 hours a day, so it's been a shock it happened so quickly. Thought it would take a few treaments. Dr.'s are expecting the Rituxan to shrink tumor, and then I'll be on a 2 year maintenance every 3 months to try and keep in remission longer. Hope yours goes well - let me know.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I have been reading all I can about follicular type. I see that is what you have also. I came across this article about bulky tumors and it sort of scared me. They were talking about tumor lysis syndrome. Did they put in a porta cath for your chemo? They are doing that tomorrow for me. I would like to keep talking to you about this. My e-mail is jskeeter1241@hotmail.com. It feels so nice when people respond to you. It lets you know you are not alone out there. I read everything I can, but so many articles contradict the last one I read. It seems as though more sensible info comes from the people that are affected than from researchers and publishers that are not directed affected with this disease. Thanks for the reponse and let me know what happens with your treatment.

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

I have not been on this forum for years from the time my husband had rectal cancer. Since then, I had treatment for indolent follicular lymphoma from August 2006 until January 2007. I had fludara/cytoxan and rituxin but not rituxan maintenance. I know at some point my lymphoma, which was also in my abdomen, largest 2.5 cm, will probably come back. I hope if and when it does, my oncologist will allow me to just do the rituxan and then maintenance. I read that the maintenance really does give much longer remissions. Treatment can be tiring but look at it as 6 months of your life where you might not feel the best and then give yourself some time to recuperate and then all should be well again!! I feel great now and have done for some years now. Do keep posting with any questions or concerns you may have. A couple of hints...keep well hydrated and in between treatments keep away from anyone with colds or flu. I became a bit paranoid during my treatment but it is wise to be careful. Hand sanitizer in your purse is a good idea when out and about.
Alison

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

THIS LYMPHOMA THING IS REALLY A SHOCK TO ME. I HAVE ONLY BEEN ON THE SITE FOR LESS THAN A MONTH. I have several tumors in my stomach. A 5 and 6cc. What was your stage when diagnosed? I am a stage 4 with no b symtoms. They tell me it is very treatsble. I noticed most of the posts are recent and very few long term post. It makes me wonder where these people went. How did your husband do with his cancer? I have read they are making great advances with lymphoma, but don't know how far they have really come. john

alihamilton's picture
alihamilton
Posts: 344
Joined: Jan 2004

I had multiple enlarged lymphnodes but never found out how many "mulitple" means! I was also stage 1V with no b symptoms...in fact, if I had not had a scan for something else, I don't know when I would have found out I had lymphoma. I was not really shocked for some reason. After all we went through with my husband three years previously, nothing seemed to compare. He did well with that cancer, even though he was stage 111C. He had a rough time but was well until now, still feels well, but having to look into treatment options for prostate cancer. External beam radiation is not an option as he had that already for his rectal cancer.

Getting this kind of news can be a shock. However, new treatments are arriving every day and the use of rituxan maintenance is giving people much longer remissions. Apparently, after a relapse, remissions MAY become shorter, but again maintenance rituxan may change that! They always say our lymphoma is incurable but treatable like any other chronic illness!

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

ALISON I KNOW WHAT YOU ARE SAYING ABOUT PROSTATE CANCER. MY FATHER WAS DIAGNOSED IN LATE 1994, BUT IT WAS IN THE VERY LATE STAGES. This is why I have my yearly prostate exams. I am 61 now. This is how my lymphoma was found. I was sent for a cat scan this past Feb. to have kidneys and bladder checked out. All came back clear. They did find enlarged lymph nodes on the scan. Like yourself I probably would still not know I had it if not for the cat scan. I start R-chop next week with 6 rounds. Glad I found someone to talk to about this. If you want to talk more in depth let me know and I can send you my e-mail. I live in NC.

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Is everything still going well for you? Yes, that rituxin will kick your butt. The chemo it self is no picnic either. I still feel where the tumors are smaller and not quite as hard in the abdomen. I hope thats a good sign anyway. I don't know how big they had gotten, but on the earlier ct scan they were up to 6 cm. and 1 was 5cm. I had smaller ones in the same area. When I had the pet scan a few weeks later they called it a mass, but not knowing how to interpret the finding sometimes we can read to much into the reports. John

onlytoday's picture
onlytoday
Posts: 596
Joined: Jun 2010

The latest news that I received from my doctor is that low grade follicular is really not going to shorten our lives. Other conditions on top of it might but not the lymphoma. I was dx on May 27 and am still getting tested to get staged so I understand your concern and confusion. I have a good day and then the next day I get all worried and anxious. I want my test results to come back so I know what's going on but on the other hand I DON"t want to know ....I'm sure you know what I mean.

They found mine on a ct scan for my gallbladder. We thought I had an attack but my gall bladder was fine. I think there are tumors in the area but won't know until the test results are shared with me on July 7.

How are your treatments going? How long do they last ? After I have all of my doctor appts I will share whatever new news they have to share on the latest on this disease. In the grand scheme of things (and on my good days) I do think we're lucky to have a "chronic" cancer. Strangest thing I've ever heard of, but sure beats the other prognosis that you often hear of!

I find this sight to be a great comfort. Best to you and stay in touch!

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I have had 1 round of r-cvp a week ago. It knocked me on my butt the next day or 2. I then had a good day and felt pretty good. Then yesterday and today felt in the dumps again. Food has a bad flavor to boot. The chemo effects are really not as bad as some of the post I have read though. The heat outside sure does not help. Its over 100 here in NC. I stay inside most of the time. I never got sick to my stomach, but did have lowerback pain. I at first thought it was my kidneys, but now I think it is muscle. It comes and goes. Yes, we are fortunate if we are going to have cancer that it is lymphoma and not one of the vital organ ones. Just keep in mind that does not exclude us from ever getting another kind of cancer. It is so many different types that anybody, anytime can get it. Cancer is on the rise not on the decline and I heard it said its not if, but when you get it and how bad will it be. I know that sounds awful to hear, but I heard it from an onc. nurse. I have follicular stage 4.Mine was found on a routine kidney ct scan to complete a urology exam. Thats when they spotted the enlarged lymph nodes. I was on the wait and watch thing till I was staged in May. Hang in there you will do just fine. John

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