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 Newly Diagnosed
 NH folicular lymphoma
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| Author | Topic: NH folicular lymphoma |
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Me2RN Member |
posted 03-01-2008 02:08 AM
  
I was diagnosed with B cell NHFL stage 4 in April 07. I am watching and waiting and I'm very interested in other peoples experiences. I know 1 other person w/it but by a mutual person. At times I feel set apart from others and would like to just talk about it with people who feel like I do or have the same experience. I have a great support group around me but they do not have cancer. IP: Logged |
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shashelt Member |
posted 03-01-2008 11:00 AM
Hi RN and welcome to the boards! We refer to ourselves as part of the reluctant member's club because no one wants to be here. But we're here to offer support for each other and now for YOU as well. Pull up a chair and get comfy. May I offer you a cup of coffee and cookies? :-) Or my all time favorite - german chocolate cake ice cream?? I've been living with DLBC and fNHL for going on 7 yrs now and have been thru several rounds of IV chemo and am presently on an oral chemo to see if we can make my fNHL behave itself for awhile - the last 2 yrs have been kinda rough but I'm still kickin'! I understand about feeling set apart from most of the rest of the world and probably pretty much all of your friends and colleagues. One just doesn't totally "get it" unless you've been there. Well, we've all been there, done that, and have the souvenirs to show for it! You've found a good place to be for comfort, support, sharing joys, worries, pain, and happiness. We understand. You may want to pop on down to the NHL forum and introduce yourself there too. We're here to help you along the journey. Peace and blessings. (...would like cream or sugar with your coffee?) :-) Sharon IP: Logged |
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mikesgirl Member |
posted 03-01-2008 12:50 PM
just wanted to tell u how sorry i am for ure diagnosis....my fiance was recently dxd w/ fnhl....we r having bone marrow biopsy next week...we know he is a stage 3 right now....i cant say i know how it feels first hand but i do know the same anger,fear,sadness that comes w/ the word cancer....im curious to know what if any symptoms u were having and how ures was found...and why watch and wait instead of treatment IP: Logged |
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mikesgirl Member |
posted 03-01-2008 12:51 PM
just wanted to tell u how sorry i am for ure diagnosis....my fiance was recently dxd w/ fnhl....we r having bone marrow biopsy next week...we know he is a stage 3 right now....i cant say i know how it feels first hand but i do know the same anger,fear,sadness that comes w/ the word cancer....im curious to know what if any symptoms u were having and how ures was found...and why watch and wait instead of treatment IP: Logged |
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CJMort Member |
posted 03-01-2008 07:17 PM
Hi RN, i too have fNHL stage 4 diagnosed in early Oct. i am also on watch and wait but will get some radiation therapy for some nodes in my collarbone region that are bothersome. The only symptom i have is some fatigue. It is hard for other people to relate to our type of cancer, my husband is a recent leukemia and stem cell transplant survivor and his experience with cancer was so different. Most people that i have met with NHL tend to be older than me, i will turn 40 in a couple of weeks. i keep hearing how "good" i look for someone with cancer and it is frustrating because i know it is in my body constantly and don't feel all that great. It is hard to vent to people when they don't see what we are going through. The watch and wait concept is hard to grasp at first but it does make sense in our case. Save the big guns until they are really needed, fNHL tends to grow very slowly so we have probably had it for a while. Try to stay positive, i know it isn't easy but hang in there. look forward to chatting with you more. CJ IP: Logged |
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BubbliRN Member |
posted 03-01-2008 10:27 PM
Hi RN, I also have fNHL, stage 4 grade 1. I received my official diagnosis on Jan 15th, 08. I am currently undergoing 5-8 rounds of Fludara and Rituxan. So far the side effects aren't too bad. We will see how my counts are when I go on Monday for my post chemo check-up. I have completed 2 rounds so far. I too am an RN. I am actually a Peds Oncology nurse. So I am familiar with cancer, just not "grown-up" cancers. But I am learning. Sorry that you are a memeber of our club, but you are in the right spot. Wishing you all the best, IP: Logged |
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Me2RN Member |
posted 03-02-2008 08:42 AM
I am okay with the diagnosis. Would not wish it on anyone else. I believe in Christ and that gives me a lot of comfort. I noticed a lump in bilateral groin areas and took a round of 2 antibiotics to rule out infection. My sites increase and decrease so it took me 2 months to see a reg. MD. I went to see a sergion the next day and a week later got the diagnosis. I am not having any symptoms but swelling and feel great. I decided to wait because of the lack of fatigue and symptoms. My Onc. said there was not any benefit to treatment now than when I have symptoms so why do it? I have 2 little ones to think about and want to be around as long as I can for them. My husband will be okay without me but I don't want to traumatize my babies. QUOTE]Originally posted by mikesgirl: just wanted to tell u how sorry i am for ure diagnosis....my fiance was recently dxd w/ fnhl....we r having bone marrow biopsy next week...we know he is a stage 3 right now....i cant say i know how it feels first hand but i do know the same anger,fear,sadness that comes w/ the word cancer....im curious to know what if any symptoms u were having and how ures was found...and why watch and wait instead of treatment[/QUOTE] IP: Logged |
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lardog Member |
posted 03-03-2008 09:02 AM
I was dx with the same almost a year earlier than you and am around after CVP-R. I am currently doing the R maint and I can say if you are on W/W good for you. When my B/M test came back positive the Dr. decided to start treatment right away. Finding people to talk to about this is difficult but after awhile you realize it's just a thing and something to be dealt with only by you. Chemo takes a while to get over and the hardest thing for me right now after 10 months post chemo is the fatigue problem and a little bit of nerve damage . It must be difficult with two little ones but you will prevail and be around for a long time. Have you had any ice cream and German chocolate cake yet? Take care. [ IP: Logged |
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ccamara Member |
posted 03-03-2008 01:47 PM
Hi, I am 34 and also have FNHL and I too am watching and waiting. I im in my 3rd recurrence of the cancer since my diagnosis in 10/05. I initially did radiation and after it came back again, we did just rituxen and now we are watching and waiting. I have a noid in my chest and one in my left groin. The dr.'s said they are small and I have no symtoms so, they advised watching & waiting. I am getting used to it, but it is very hard. At least for me it is I have two children, 12 and 9...how old are yours. I agree, I feel set apart from others too, but that's why I come here. There are so many knowledgeable people here who understand exactly how I feel. It is reassuring to have support from others who are going through exactly what I am. Best to you. Anything you need, just let us know. Carolyn IP: Logged |
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Me2RN Member |
posted 03-03-2008 03:02 PM
My children are 3 and 6. quote: IP: Logged |
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dawnsie123 Member |
posted 03-05-2008 08:26 PM
I have NHL -follicular slow growing stage 1. It was only found in one lymph node in my groin and surgically removed. Going for my 2nd opinion on treatment tomorrow. My body is free of cancer according to pet scan. My choices are watch & wait, radiation, or Rituxan. Does anyone know what they base this on? I think I would be a good candidate for watch and wait - yet this expert Dr. that I met in a Lymphoma meeting suggested Radiation to that area. He said you really cant cut lymphoma out. So how am I different than a normal person? Is it still there or just dormant in my body? Anybody else with a similiar experience? IP: Logged |
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Me2RN Member |
posted 03-05-2008 08:54 PM
quote: IP: Logged |
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Me2RN Member |
posted 03-05-2008 09:06 PM
Sorry about the mess up below I am trying to get used to this posting thing. After I had my biopsy I went to 3 oncologist. The first said watch and wait, the second said get into a trial because of my age and the third let me figure it out. I decided to watch and wait because the 3rd who was an expert said we could treat but without symptoms bone marrow biopsy would be the only way to determine if I was going into remission. As far as I have read and been told NHFL never goes away just lays hidden. If you have read some posts here it can give you some direction on what to talk to your Onc. about. I plan on asking my Onc. about rituxin in april when I go back after a CT and lab work. My lymphoma is stage 4 but barely in my bone marrow. Only way they found it was with cytromatry. I feel I am getting over my denial stage and am ready to learn/fight for my life. quote: IP: Logged |
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dawnsie123 Member |
posted 03-05-2008 10:37 PM
Hi RN, I had MRI's, Cat scans, an inconclusive needle biopsy, bone marrow test etc. So its hard to believe if you had all that they had such a hard time finding it with the exception of Cytometry. Did you have a biopsy? With mine they operated and removed an almost golf ball sized lump in my leg groin area, then did biopsies and what-not afterwards. I kept pressuring to get the damn thing out of me- it was very obvious- I felt it and it grew plenty in 3 mo's. It took them a month to decide to take it out. Christmas isnt a good time to get cancer. Everyone is busy planning how they can live and enjoy the holidays instead of someone being there 24/7 to help us. At first they thought it was a nerve sheath tumor- so I went from surgeon to plastic surgeon- they specialize in removing those type. Only after the plastic surgeon removed it -did I get the diagnosis. Supposedly I am free of disease, but I just read in another post about a Pet scan telling someone they were ok and they were not. Leaves me wondering if I should do the watch and wait if I have that option. I am in stage I- slow growing according to them. I have to wonder about that. Seemed to grow double the size in 3 mo's. Or I can do radiation or rituxan. The onc says any one of these is no more right or wrong than the other. Going for my 2nd opinion tomorrow. I hear many stories of people that are in Stage 4 beating it. So keep your head up, keep busy and sourround yourself only with positive things. That is what I would try to do. I know- easier said than done if the depression bug gets you. I just wanted to know there is plenty of hope. Dawnsie P.S. Just highlight and delete original message with reply each time. Its a piece of cake!  [This message has been edited by dawnsie123 (edited 03-05-2008).] IP: Logged |
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dawnsie123 Member |
posted 03-05-2008 10:45 PM
Shashelt-Sharon- I really smiled when you said would you like milk and cookies- Thanks for the warm fireplace kinda feeling... IP: Logged |
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Me2RN Member |
posted 03-06-2008 09:41 AM
I'm sorry if I confused you. I did have a lymph node in my groin removed and that is where they found lymphoma. My onc said if I had done the BMB years ago they would not have found it in the bone marrow but because of the new technology cytology has advanced. When I found my lump it seemed to come up fast and I asked the onc. what slow growing really ment. He never gave me an answer. I wonder if it so big because of the immune system trying to fight it. On the CT they said my lymph node in my neck was enlarged. April or so 07 I have just began to swell in my neck. Swelling is okay for me. I treat when the fatigue is so bad I cannot function or my blood counts fall. That may not be okay with others, it will be my choice IP: Logged |
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shashelt Member |
posted 03-06-2008 12:41 PM
You're welcome Dawnsie. That's the way I look at this board - we're all just sitting around (by the fire... on the porch... around a kitchen table...) talking and comforting, laughing, or crying - whatever the needs of the moment are. :-) Hope everyone has a great Thursday! IP: Logged |
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ccamara Member |
posted 03-06-2008 08:40 PM
Hang in there...these boards are a great place to come to find support and get some great advice and knowledge. I find myself in a series of ups and downs emotionally. Watching and waiting is difficult sometimes. My next scan is next week; then we'll see if things have changed or if things are the same and go from there, treatment or more watch and wait. Yes, it is difficult, but you can do it...If I can anyone can...I tend to be a bundle of nerves without cancer; so with it oh boy!!!! Love & Peace, IP: Logged |
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dawnsie123 Member |
posted 03-07-2008 12:43 PM
My update- The second opinion specialist I saw said they want to do another Ct scan of chest and neck area and reanalyze the actual tumor sample all over again. Then they will render their opinion. If its just in the groin- they said they will recommend radiation. If not- to be continued...Its like starting all over again with a new diagnosis. I am annoyed at my original Dr. because he made it seem like I had a choice between watch and wait, radiation or rituxan. Then he suggested seeing a radiologist. He didnt explain it thoroughly enough. I actually really dont have a choice as the standard protocol for treating my kind of lymphoma in one specific area is usually radiation. I have spoken to other doctors in Gilda's meetings and they all agreed. They said Rituxan and watch and wait is usually used when there is more than one lymph node involved. I am glad I got my 2nd opinion and talked to other Dr's. Going to seminars gives you more knowledge and you can see where the Dr's are falling short in their communication skills. Might eventually switch out Hematologist -Onc for another. IP: Logged |
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Me2RN Member |
posted 03-07-2008 01:03 PM
Dawnsie: I'm glad you posted about your second oppinion. Does radiation put you into remission? Do they know what kind of slow growing lymphoma it is? I think that if you do watch and wait it continues to spread while you wait. I'm glad they only found it in one of your nodes at this point. That is a blessing. I do feel for you that you have to deal with it at all. How old ar you? IP: Logged |
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2ndtimearound Member |
posted 03-07-2008 09:52 PM
It helps and hurts and encourages us to read all of the postings you all have made. My wife has bcell nhl (third time) and (she) can appreciate and relate to everything you have experienced. Thank all of you for sharing your experiences. We are new to this 'club' (ie., internet, not cancer) and I am uplifted reading your postings. My wife doesn't feel well enough to read them and to even participate in much of anything right now, but, we are hoping, along with the rest of you, for better days. Best Wishes to one and all. IP: Logged |
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dawnsie123 Member |
posted 03-10-2008 05:43 PM
I am 46 with one lymph node removed so far... B cell NHL, type A, Stage 1.
[This message has been edited by dawnsie123 (edited 03-10-2008).] IP: Logged |
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boletus_hunter Member |
posted 03-11-2008 05:10 AM
Hello All!, Brand new dx or been around awhile. Sharon, I'm back to half & half with my coffee. Regained all my lost weight using whipping cream and it tasted swell. Hate to have to give it up. This is my 10 year anniversary month! An interesting bumpy road and I much preferred being knowledgeable about children's video's rather than f-nhl No W&W for me, straight into CHOP_R and though the remission wasn't so durable, I've done Rituxan every couple years until 2005. Last year was cvp and now more Rituxan. It isn't easy, but it's life and a darn nice one. AOften I do feel 'set apart', not realizing it most of the time. Sat. night, went to a play and met and saw someone whose husband was recently dxed. Our greeting and updates given in the vocabulary that has become so common was a weird comfortable familiarity with one I barely knew! Dean, I hope your wife is feeling better soon ! God Speed, IP: Logged |
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shashelt Member |
posted 03-11-2008 08:23 AM
Half and half in the coffee, eh Donna?? TSk, tsk, tsk...don't you worry about the cholesterol? lol Nah - me neither! Don't worry too much about anything anymore. Takes too much energy to worry and I need my energy for fighting cancer. You're so right - it isn't easy but we do what we must. Cancer ain't for sissies, is it?? I'm struggling now more with mental fatigue than the physical. My body feels fine but I'm just feeling so damn tired in my head. Keep my DH in your prayers that he lands a 6-figure job so I can quit work! LOL OK - keep him in your prayers that he just finds a well paying job, no matter the # of zeroes - he needs to work. Time to start getting ready for work myself. IP: Logged |
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2ndtimearound Member |
posted 03-11-2008 11:02 PM
Sharon: Even tho I am new at this, I enjoy your postings. You always cheer people up. I noticed that you live in Yuma, Az, and we lived in Phoenix for several years. Moved back to the Midwest when my wife got sick so we could live close to our children and Grand Children in our old age. My wife was diagnosed when we lived in Phoenix and had a staging laparotomy at St Josephs Hospital in Phoenix (wonderful hospital). I will do 'the rest of the story' next time (maybe) but, we used to visit Yuma occasionaly and enjoyed trying to get in McDonalds in January when the winter visitors were in town. Only city in the world that more than doubles in size in the winter. The Colorado river runnig thru your town is beautiful. Hope you didn't mind me writing all of this. Dean Haywood, Little Rock, Ar. IP: Logged |
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