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just diagnosed in april with nhl

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

I WAS JUST DIAGNOSED WITH NHL IN APRIL. IT IS FOLLICULAR AND LOCATED IN THE ABDOMIN. SOME OF THE TUMORS ARE UP TO 5CM. I DO NOT HAVE ANY B SYMTOMS YET. THEY ARE USING THE WATCH AND WAIT ACTION. IT REALLY HAS ME SCARED AND DON'T KNOW WHAT TO DO. I AM 61 YEARS OLD. DO NOT KNOW HOW FAR THEY HAVE COME WITH ADVANCES IN THE LATER YEARS. ANYONE OUT THERE THAT CAN FILL ME IN. I LOOK ON DIFFERENT SITES, BUT AS YOU YOU PROBABLY KNOW YOU GET A DIFFERENT ANSWER FROM DIFFERENT SITES. SOMEONE THAT HAS THE SAME DIAGNOSIS AS I DO CAN BE A LOT MORE HELP I AM SURE. ANY INFO WOULD BE OF HELP THANKS

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Cobra,
Sorry for your diagnosis I know you're going through a difficult time. I was diagnosed in Aug 09 with FNHL also. I have it in my abdomen, armpits, collar bone area and hip bone. I did the watch & wait for about 8 months. It is very nerve wracking thinking that you should be doing something and no one is doing anything but testing every few months. I've heard until they reach 10 or 12 cm that treatment is not necessary. Follicular is very slow growing and non-aggressive and you have probably had it for years. Once you have treatment the chances of it coming back are very high and treatments will be needed again in the future. The idea is if you hit it too soon and too strong it is harder to treat if it comes back. There is a fairly new treatment called Rituxan which attaches itself to the lymphoma cells and tells your body to kill them. The side effects for most people are minimal and controlled. I had this treatment in April, and there are others on this site who have also had it and have good results. I hope this information gives you some comfort and hope. Best Wishes to you! Cat

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

THANKS FOR THE REPLY CAT
YES, IT IS VERY NERVE WRACKING AND YOU DON'T KNOW WHICH WAY TO TURN SOMETIMES. WHEN THE DR. TOLD ME AT CAPE FEAR ONOCOLOGY THAT SINCE NOTHING WAS GOING ON THEY WERE JUST GOING TO WAIT AND WATCH. I THOUGHT TO MYSELF THAT SOMETHING MUST HAVE BEEN GOING ON IN THERE FOR A COUPLE OF THEM TO REACH 5CM. THEY ARE ALL IN MY ABDOMEN. I HAD A PET SCAN AND IT SHOWED A VERY SMALL ONE IN THE GROIN ONLY 2MM. MY SPLEEN IS NOT SWOLLEN. JUST HAD A BONE BIOPSY AND GET THE RESULTS SOON. I GET CONSTIPATED A LOT AND IT WORRIED ME THAT IT WAS IN MY COLON. IT WAS NOT BECAUSE I HAD THE COLONOSCOPY AND ALL WAS CLEAR. I GUESS SINCE THEY ARE ALL GATHERED IN MY ABDOMEN IT IS PUTTING PRESSURE ON EVERYTHING. I READ SO MUCH ON THE COMPUTER ABOUT NHL I DON'T KNOW WHAT TO BELIEVE. MAKES ME WONDER IF I SHOULD KEEP READING THOSE ARTICLES. I READ ONE ARTICLE THAT SOME PEOPLE CONSIDER IT A CHRONIC DISEASE. OTHERS CONSIDER IT A TIME BOMB, SOME SAY IT IS POSSIBLE TO PUT IN REMISSION AND OTHERS SAY NO,ETC.,ETC. YOU KNOW WHAT I MEAN ANYWAY.
BY THE WAY HOW WELL DID YOUR TREATMENTS GO. DID YOUR BODY RESPOND WELL? I ASSUME IT IS DONE TO SHRINK THE TUMORS. DID YOU HAVE TO HAVE WHAT IS CALLED THE CHOP TREATMENT? I SEE THAT A LOT ON THE SITES I GO TOO. THANKS AND GOOD LUCK, COBRA666

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Cobra,
I didn't have the CHOP (yet), that is chemo. Sometimes it's given with the Rituxan and then it's called R-CHOP. I won't have a scan until July to know for sure what the Rituxan did, but I definitely feel a difference. I'm not as tired and no night sweats! So I think it must have worked. The side effects from Rituxan are usually mild (no nausea or hair loss)and are treated with an acetaminophen(Tylenol), an antihistamine (Benadryl), a steroid (Prednisone) and depending how severe your reaction possibly Demoral. I believe the side effects are caused by the cells dying and your body can't get rid of them as fast as they're dying. My first treatment took 8 hours so my body had time to cleanse them out. Each treatment went faster and my 4th one was about 3 hours. I had a bone marrow biopsy and a bone biopsy (these are different), my marrow is clean and my spleen is ok :>). There is a lot of information out there, and not all of it will apply to you. Don't be afraid to ask your onc questions, that's what they're there for. We're here for you too! Thanks for your good wishes! Best of luck to you too. Cat

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

I REALLY APPRECIATE ALL YOUR HELP WITH THE RESPONSES. IT DOES MAKE ME FEEL A LOT BETTER HEARING SO MANY POSITIVES ANSWERS. I KNOW ALL CASES ARE DIFFERENT. I AM CONSTANTLY CHECKING SITES FOR MORE INFO. WHAT HAPPENS IS IT LEADS INTO ANOTHER PHASE AND IF YOU ARE NOT AWARE YOU ARE READING AT ANOTHER LEVEL OF THE DISEASE(IF THAT MAKES SENSE) AN EXAMPLE IS I AM READING ABOUT FOLLICULAR AND THEN IT MOVES RIGHT INTO MANTLE CELL BEFORE YOU EVEN REALIZE IT. AS FAR AS ASKING THE ONC. QUESTIONS, WELL I DO AND WHEN I GET HOME I THINK OF A BUNCH MORE I SHOULD HAVE ASKED. I GET MY BONE MARROW RESULTS TODAY AND I WILL LET YOU KNOW ABOUT THAT. BY THE WAY YOU HAVE A CUTE LITTLE BABY ON YOUR PICTURE. YOU REALLY HAVE A LOT TO FIGHT FOR THERE. I SEE SO MANY STORIES ON THE SITE WITH REALLY YOUNG PEOPLE WITH YOUNG ONES. ITS JUST NOT FAIR THEY HAVE TO BE FACED WITH THIS TERRIBLE THING. THANKS AGAIN, JOHN

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi John! I wish you the best on your marrow results! That is my granddaughter with me, she's my little dolly! It makes me think I have to fight with everything I have, but at the same time I think - if it's my time, then I have been blessed. So many people never get to have children or grandchildren. If there is one thing I have learned during all this turmoil it is to appreciate every moment and take the joy where you can find it. We're all here for you and I'll be praying for you to have good results tomorrow! Cat

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

YOU LOOK WAY TO YOUNG TO HAVE A GRANDDAUGHTER. I HAVE 2 GRANDSONS AGED 3 AND 5. ONE GRANDDAUGHTER AGED 8 MONTHS. ANYWAY I JUST GOT BACK FROM MY ONC. WITH RESULTS AND IT HAS GOT TO MY BONE MARROW WITH 1.45% FOUND IN THE MARROW. I HAVE TO GET A PORT PUT IN SOON. R-CHOP WILL BE STARTED SOON. I GUESS I HAVE ANOTHER WORRY NOW. I HAVE READ GREAT RESULTS ABOUT THE R DRUG. I HAVE ALSO READ WE CAN EXPECT IT TO REACH THE BONE MARROW WITH THE WAIT AND WATCH TREATMENT. MY ONC. SAYS IT MAKES NO DIFFERENCE AS FAR AS TREATMENT GOES. NHL IS STAGED, BUT NOT LIKE OTHER TYPES OF CANCERS ARE STAGED. IT IS LYMPH CANCER NO MATTER WHERE IT GOES. IF IT WOULD GO TO THE BRAIN THEN THERE WOULD BE A DIFFERENT TYPE OF TREATMENT.I AM TRYING TO BE POSITIVE AND HOPING FOR THE BEST. THANKS FOR GETTING BACK TO ME.

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

Me too! I will be 60 in November. I have 2 tumors that are hugh and some small ones. They are located in the abdominal cavaty but not attached to any organs. Very uncomfortable. Mine were so large that they had to do chemo. If they are small and they can wait and watch for a while you are lucky (even though it doesn't seem so) I understand the fear. Follicular isn't curable but managable. It grows very slowly. I am hoping for a few years remission. You know before you need any therapy, they may find a cure. Things are happening fast in the cancer field. Take a deep breath, and walk thru it!

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

I HOPE THEY FIND A CURE FOR EVERYONES SAKE. THE WORD CANCER IS SO FRIGHTNING. WHEN AND WHAT KIND OF CHEMO DID YOU HAVE? WHEN WERE YOU DIAGNOSED? HOW LARGE WERE YOUR TUMORS? MINE HAS NOT ATTACHED TO ANY ORGANS AS OF YET EITHER.AT LEAST THAT IS WHAT THE PET SCAN SHOWS. THIS STUFF IS ALL SO NEW TO ME. I FOUND THIS SITE WHILE LOOKING UP ALL I COULD ABOUT NHL AND IT IS A WONDERFUL FORUM FOR PEOPLE. PLEASE KEEP IN TOUCH, I WILL ANSWER EVERYONE THAT CONTACTS ME. IT LETS ALL OF US KNOW WE ARE NOT ALONE IN THIS BATTLE. COBRA

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

One of my tumors was 6.9x14.4x13.7cm one was 7.3x10.8, then some smaller ones like 2x3.1 Fortunately they just displaced my bowels. I am having RCHOP had my first round on the 21st of May. I noticed today my hair is starting to come out. I think that bothers me most. My tumors are shrinking fast,so I am happy about that. I will be having 6 rounds.

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

I WAS DIAGNOSED THIS PAST APRIL. I GOT RESULTS FROM BONE MARROW BIOPSY TODAY. IT WAS FOUND IN THERE TOO. PUT ME AT STAGE 4. ABDOMINAL TUMORS ARE 6CM AND 5CM THE OTHERS ARE A BIT SMALLER. PET SCAN SHOWED ANOTHER SMALL ONE IN GROIN AND A SMALL ONE IN THE LOWER SHOULDER AREA. THEY ARE GETTING ME STARTED PRETTY SOON FOR R-CHOP. I HOPE IT WORKS. SEEMS LIKE YOURS WORKED PRETTY FAST IN SHRINKING YOUR TUMORS. THAT IS GREAT!!! HAS ANYONE SAID HOW LONG REMISSION WILL LAST. I AM SO EXHAUSTED AT CHECKING ALL THE SCIENTIFIC ARTICLES AND GETTING DIFFERENT ANSWERS. THANKS FOR GETTING BACK TO ME. IT SOUNDS LIKE YOU ARE WELL ON YOUR WAY. I GUESS IN A WAY WE ARE LUCKY, IF WE CAN CALL IT THAT, THEY ARE MAKING GREAT STRIDES IN THE NHL FIELD.

kayebadoe's picture
kayebadoe
Posts: 81
Joined: May 2010

My Dr says remission can be up to 10 years. Its a crap shoot though. I am thinking positive and eating to help my body cope with all this poison. I had my first CBC and my blood count hadn't dropped at all. I am very happy about that. So start eating good! Help your body to cope. My email addy is hair2daygone2marrow@yahoo.com. If you want to talk you can email me anytime. I will try to let you know what to expect. I will be one treatment ahead of you. I did a lot of research too, so I know right where you are.

yesyes2
Posts: 461
Joined: Jul 2009

Hi John,
I do not have fNHL but I do have another type of lymphoma and just finished 6 cycles of RCHOP in February. For me this could be a cure, they just don't know as the type I have LPD is very rare. Chemo is not fun but is very doable and you should do just fine. If you would like any information just let me know. And congrats on your port. It sure makes getting chemo and having blood draws so much easier. If you have a power port you can have the infusions for CAT scans done through your port also, but alas not PETS. I'm just wondering why your Onc is giving you RCHOP instead of RCVP. There is a max on the amount of Adriamyicin you can have in a life time and some oncs want to save it for a recurrance or transformation. I'm just wondering and trying to educate myself.
Good luck and let me know when you start chemo.
Leslie

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

I really do not know why he chose the r-chop. Maybe because of the type of lymphoma I have. I will find out about it though. I need all the help I can get with the knowledge that all the survivors have. I really appreciate you getting back to me. John

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

I did CVP+R, the only difference between it and Chop + R is the Adriamycin. It is a scary experience to be sure. My tumors were small but I was having B symptoms, losing weight, night sweats, and just generally not feeling good.

Treatment is doable and I have a friend who was 60 and has Diffuse Large B Cell aggressive lymphoma and did R Chop and has been cancer free for about 3 years now. She flew through chemo without any trouble, of course took lots of naps (I do too and still love my naps to this day) LOL.

Take care, drink lots of water, eat well and rest when you need it.

Beth

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

I HAVE THE FOLLICULAR TYPE WHICH IS NOT AGGRESSIVE AT ALL, BUT THE CHEMO IS ABOUT THE SAME. R-CHOP, WHICH WILL BE STARTED SOON. ITS NOT CUREABLE BUT IS TREATABLE. THE CHEMO IS SCARY TO ME, BUT I HAVE NO CHOICE. I GET MY PORT INSTALLED THIS COMING MONDAY. I HEARD IT SAID IT WILL HAVE TO STAY IN FOR AT LEAST 2 YEARS. I TRY TO KEEP POSITIVE, BUT IT IS HARD TO DO SOMETIMES. WHAT TYPE DID YOU HAVE? I ASSUME YOU ARE DOING WELL. JOHN

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

John,

I started out with MALT and Lymphoplasmacytic Lymphoma stage 1. This last relapse it's changed a little to Follicular stage 3. All are indolent and treatable, but like you most likely not curable. It's ok. If I have to have cancer, I prefer this type........but I admit I do get very frustrated with this stuff. I just sometimes want my normal life back. It is hard to realize I have a new normal with this stuff. It just IS. I do watch myself much closer and do what I need to do a day at a time.

It takes time to absorb, accept, and understand. Be patient with yourself and your emotions. It'll work out.

Take care,
Beth

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

I THINK TOR POSITIVE outlook is great. yes, it is rough when we first hear the word cancer. I check different sites all the time trying to find answers. One of the major thing is age. I am 61. I assume you are younger than that. I started out with the follicular and hope it does not change to anything more aggressive as time goes on. did they give you a porta cath? I get mine on monday. really not looking forward to it, but have no choice. I see you joined this site back in 2006. Have you had any setbacks? I hope I am not repeating myself, but in my state of mind right now I can't help it. John

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi John and welcome. I have a friend, 29, who was just recently diagnosed with non hodgkins lymphnoma. He has it on his coller bone and in his chest. I come onto this site just to get stories and updates for him. I was a caregiver for my dad. He passed away in March from esophageal cancer with mets to the liver. Cancer just sucks! No other way to put it. But....the kind that you have is very treatable, and able to be put into remission. Your age is not that old, I do not think that will cause you any problems.
Just prepare yourself for your treatments. Keep hydrated, be strong, eat well, and keep a positive outlook. I feel that your state of mind plays a major role in your success of beating this. Best of luck to you. keep in touch. Peace be with you and yours.
Tina

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

John,

I was diagnosed in April 2006 4 days before my 42nd birthday. I am 46 now. I do kind of hope mine changes to aggressive...(the aggressive lymphomas are possibly curable). I've had a couple setbacks, but the rituxan's doing it's job and my spots are getting better.

My onc is happy and I'm working on it. :)

I didn't do a port, my veins are pretty good, although if I do anything after this maintenance I probably will. The more the treatments the harder it is on them. I have lost track now of how many IV's I've had lol....too many, I DO know that haha.

You're state of mind is fine. You're going through a rough patch and you're entitled to mind lapses. Chemo brain is a wonderful thing....great excuse for procrastination LOL.

Take care honey...it'll be ok.

Beth

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