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Thread: Stage IV Follicular Non-Hodgkin's Lymphoma - new to this forum

  1. #1
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    Stage IV Follicular Non-Hodgkin's Lymphoma - new to this forum

    Let me apologise in advance but I thought this was the best place for me to be able to pour my heart out and share my story with people who may understand. Don't get me wrong, I have an amazing circle of friends and my mum who are all wonderful, but try as they might, they don't really understand.

    Well it's been a whirlwind and all happened so fast. I had a golf ball size lump appear just above my collarbone out of nowhere, my chiropractor actually found it on a visit to see her on Friday, 20 April 2012 to crack my neck into place. She was worried as she said it wasn't just muscular and that it was definitely swelling in my glands. I thought nothing of it, went to bootcamp on the Saturday morning and knowing that the lump was there, it started to bother me. The lump wasn't sore, rather just worrying. My housemate kept at me all weekend that she thought I should go to the doctor to have it looked at...I'm not a massive fan of doctors so I kept saying "no, it'll be right". Went to work on the Monday and mentioned it to a workmate who really encouraged me to make an appointment with the GP, saying that she had previously worked with a girl that had had the same thing happen and it had turned out to be lymphoma.

    So I started to get a little more concerned and after work on Monday, 23 April 2012 I went off to see my GP. Well, when all the colour drains from your GP's face it doesn't make you feel too great. She was worried, checked all my lyph nodes, found others that were enlarged and sent me off for a barrage of tests the next morning. Tuesday morning I headed off for my blood test and then off to the x-ray place for a chest x-ray and ultrasound, with a possible needle biopsy. I booked in for the chest x-ray immediately but was told that I had to come back in a week for the ultrasound. After the chest x-ray I drove to work, parked the car and was just about to walk in the door to work when my phone rang. It was the x-ray technician and he stuttered that they had had a cancellation and could I come back immediately for my ultrasound. Oh oh....that doesn't sound good. So I headed back to the car and back for my ultrasound where they found numerous enlarged lymph nodes on the left side of my neck and performed a fine needle biopsy. At this point I still wasn't too worried...I was adamant that I had cat scratch fever and would be totally fine after a dose of anitbiotics. So I headed back to work and tried my best not to worry about the results.

    It was a very long week but Friday, 27 April 2012 finally arrived and after work I headed off to see my GP. She started with the words "I'm sorry" so I knew then and there it wasn't good. My needle biopsy results had come back suspicious of lymphoproliferative disorder and she wanted me to have the lymph node removed and tested further. I guess at this point I still wasn't too worried...I mean she only said it was suspicious right!! So my GP called a couple of surgeons at 5:30 on a Friday afternoon until she found one who would see me Monday morning and operate on Monday afternoon. Whoa....really...this is all so sudden.

    So I met with the surgeon Monday, 30 April 2012 in the morning and he told me that I was to come back to see him on Thursday, 3 May 2012 for the results and that I was to have the rest of the week off as we would need to refer me to someone etc. Hang on...I thought we were still just suspicious....now you're starting to freak me out a little. I guess between that Monday and Thursday, even though I had in the back of my mind that I had lymphoma, I still wasn't too worried...I still thought it would turn out to be nothing. So when I went to see the surgeon for my results and he started with "it's bad" I then knew something really was wrong.

    The surgeon advised me I had lymphoma, but wasn't specific with which type I had. He referred me to see an oncologist and to have some CT scans done before that appointment. So off for more tests and time to do more googling!! My GP called to check up on me on Friday, 4 May 2012 and chatting with her about the results she told me she had a copy and could confirm it was Follicular Non-Hodgkin's Lymphoma....not the one I wanted in the cancer lottery.

    It's funny, I'm a soldier on kind of person and have probably had some symptoms for ages and just brushed them to the side...I mean who stops when they are fatigued? Who worries when they are short of breath when exercising? Who stops when they have a bit of joint pain or other pains in the body? The only symptom I wanted was the sudden, unexplained weightloss and I didn't get that one!!! But that long weekend was a very long weekend and I just went with not feeling great and found solace watching movies on the couch, oh and drinking for purely medicinal reasons of course!!

    Tuesday, 8 May 2012 saw me back at work telling my boss that I had cancer and I would need to leave work early that day to meet with my oncologist. As I was hearing these words come out of my mouth they sounded foreign to me, like really? Is this really happening? My boss was great, told me to take any time off I needed and I told him I just wasn't sure when I'd be back. I took my housemate with me to the oncologist, a second pair of ears for listening and a second enquiring mind. The oncologist showed me my CT scans which revealed I had the cancer in all of my lymph nodes, not just confined to one area. My mind started screaming at me going "this isn't good...remember what you read on google". But I ignored my mind and kept listening instead. The oncologist said that we needed to stage my cancer, referred me for a PET scan and a bone marrow biopsy and asked me about harvesting my eggs.

    Wedenesday, 9 May 2012 my housemate dropped me at the hospital for my PET scan. After the PET scan I headed up to HOCA (Haematology and Oncology Clinics of Australia), for my bone marrow biopsy. On Friday, 11 May 2012 the receptionist called me to tell me that she had booked me in for a portacath to be inserted on Monday and the doctor called and revealed that I did have cancer in my bone marrow, meaning that my final diagnosis is Grade 1-2 Stage IV Follicular Non-Hodgkin's Lymphoma.

    Monday, 14 May 2012, I spent the morning in bed worrying about the portacath and then headed to the hospital. I headed in for the portacath surgery under x-ray and the twilight sedation they gave me didn't work. It was a harrowing experience feeling everything they were doing and just crying through the whole thing, made just that little bit more bearable by the lovely nurse who held my had and wiped my tears with a tissue and kept whispering "I'm so sorry, you shouldn't be here".

    Thursday 17 May 2012 I headed to the cancer clinic for my first session of Mabthera and Friday 18 May 2012 I had my first round of CHOP.

    I have now had four rounds of R-CHOP and I head to have my scans and another bone marrow biopsy on Thursday, 2 August 2012 as my Oncologist said I should be in remission after round 4. I have massive fears that the chemo hasn't worked, that I won't really be in remission. I'm really over being "Cancer Girl", I'm sick of feeling awful, I hate having no hair and I'm thankful for finding this place where so many of you I"m sure know exactly how I'm feeling.

    Thank you for allowing me to pour my heart out.
    Coralie
    Stage IV Follicular Non-Hodgkin's Lymphoma diagnosed April 2012
    6 rounds R-CHOP
    Remission after round 4
    Waiting to have stem cell harvest

  2. #2
    Administrator Top User Kermica's Avatar
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    Hi Cozzie and welcome to the place no one wants to be but many come to value. I took the liberty of moving your post here into the Lymphoma Board. There are quite a few of us FL folks who spend time here and many of us have been through what you are going through. This is the place where you will find folks who are traveliing the same road you are and can help with advice, support, a sounding board or just knowledgable listening.

    You have written an excellent introduction which will, I think, serve many others who want to know what to expect as they go through the diagnostic process and end up with a diagnosis they really didn't want to hear. So welcome. I am sure others will chime in and soon you will find that you have friends here who have "been there, done that" and who most importantly know exactly what you are going through.

    The chemo and Rituximab should almost certainly do the job and put you into remission, Cozzie. They have an excellent track record of doing exactly that. The insidious little beast we battle may come back, as you know from your time with Dr. Google, but it should be years and now you are prepared and have a team behind you to stop it if it does. Of course, the other good news is that the research into ways to stop it permanently continues and the news is promising for us. Not proven, yet, but promising none the less. I wish you well with the rest of your treatments.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09

    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.

    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.

    Significant progression detected in PET scan - December 2012

    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.

    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.

    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".

    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.

    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  3. #3
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    Hearing Stage 4 was the scariest part for me.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  4. #4
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    When I got the first CT scan showing multiple nodes everywhere enlarged was my minor freak out moment ... even then, it wasn't a definitive diagnosis, that only came about 2 months later. By the time it did, I'd have so many people saying it looks like lymphoma (including, ironically, the technician doing the FNA - negative of course) & so long waiting for test results/seeing other doctors that I was well prepared for it, & knew very well that though not all fun & games, the outlook is generally good.

    To the OP, I pretty much suspected my chaemo had worked as the only visible surface node I had vanished after a couple of RCHOP cycles. Also, another good sign, was that I felt good (well, a bit icky at times due to the chaemo, but, meh) throughout - no secondary signs, like night sweats or (I wish) weightloss. Anyway, only scans etc will be conclusive of course, & I guess everyone's prognosis is different, but for fNHL the odds of chaemo working are really good ... I was given odds of 75 to 80%. Even if it don't, there are still options, in the rare event of the chaemo not working, it's hardly game over time,

    Anyway, good luck, & I know this is daft advice in a way, but try not to worrry.
    Jul 2010 lump L groin. Jul 2011 lump R clavicle. 2 x FNA negative. Blood tests all negative. X-ray Jan 2011 : mulitple enlarged nodes. Excissional Biopsis Feb 2012 : lymphoma. Staged IV grade 3a fNHL. Felt more or less fine throughout! It was all some dreadful mistake (mixed up medical records?), but just in case humoured the doc by doing 6 x RCHOP starting Mar 2012. CR confirmed after 3 cycles. Completed 6 cycles Jul 2012. CR reconfirmed Aug 2012.

  5. #5
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    Why was stage 4 the scariest part bank walker? In blood cancers it's not as bad as if it was lung cancer etc

  6. #6
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by Kartoz View Post
    Why was stage 4 the scariest part bank walker? In blood cancers it's not as bad as if it was lung cancer etc
    Believe me kartoz its scary. This is not a pissing contest so don't include the other forums, they won't appreciate it, nor will we.

    Cheers
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  7. #7
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by Cozzie View Post
    Let me apologise in advance but I thought this was the best place for me to be able to pour my heart out and share my story with people who may understand. Don't get me wrong, I have an amazing circle of friends and my mum who are all wonderful, but try as they might, they don't really understand.

    Well it's been a whirlwind and all happened so fast. I had a golf ball size lump appear just above my collarbone out of nowhere, my chiropractor actually found it on a visit to see her on Friday, 20 April 2012 to crack my neck into place. She was worried as she said it wasn't just muscular and that it was definitely swelling in my glands. I thought nothing of it, went to bootcamp on the Saturday morning and knowing that the lump was there, it started to bother me. The lump wasn't sore, rather just worrying. My housemate kept at me all weekend that she thought I should go to the doctor to have it looked at...I'm not a massive fan of doctors so I kept saying "no, it'll be right". Went to work on the Monday and mentioned it to a workmate who really encouraged me to make an appointment with the GP, saying that she had previously worked with a girl that had had the same thing happen and it had turned out to be lymphoma.

    So I started to get a little more concerned and after work on Monday, 23 April 2012 I went off to see my GP. Well, when all the colour drains from your GP's face it doesn't make you feel too great. She was worried, checked all my lyph nodes, found others that were enlarged and sent me off for a barrage of tests the next morning. Tuesday morning I headed off for my blood test and then off to the x-ray place for a chest x-ray and ultrasound, with a possible needle biopsy. I booked in for the chest x-ray immediately but was told that I had to come back in a week for the ultrasound. After the chest x-ray I drove to work, parked the car and was just about to walk in the door to work when my phone rang. It was the x-ray technician and he stuttered that they had had a cancellation and could I come back immediately for my ultrasound. Oh oh....that doesn't sound good. So I headed back to the car and back for my ultrasound where they found numerous enlarged lymph nodes on the left side of my neck and performed a fine needle biopsy. At this point I still wasn't too worried...I was adamant that I had cat scratch fever and would be totally fine after a dose of anitbiotics. So I headed back to work and tried my best not to worry about the results.

    It was a very long week but Friday, 27 April 2012 finally arrived and after work I headed off to see my GP. She started with the words "I'm sorry" so I knew then and there it wasn't good. My needle biopsy results had come back suspicious of lymphoproliferative disorder and she wanted me to have the lymph node removed and tested further. I guess at this point I still wasn't too worried...I mean she only said it was suspicious right!! So my GP called a couple of surgeons at 5:30 on a Friday afternoon until she found one who would see me Monday morning and operate on Monday afternoon. Whoa....really...this is all so sudden.

    So I met with the surgeon Monday, 30 April 2012 in the morning and he told me that I was to come back to see him on Thursday, 3 May 2012 for the results and that I was to have the rest of the week off as we would need to refer me to someone etc. Hang on...I thought we were still just suspicious....now you're starting to freak me out a little. I guess between that Monday and Thursday, even though I had in the back of my mind that I had lymphoma, I still wasn't too worried...I still thought it would turn out to be nothing. So when I went to see the surgeon for my results and he started with "it's bad" I then knew something really was wrong.

    The surgeon advised me I had lymphoma, but wasn't specific with which type I had. He referred me to see an oncologist and to have some CT scans done before that appointment. So off for more tests and time to do more googling!! My GP called to check up on me on Friday, 4 May 2012 and chatting with her about the results she told me she had a copy and could confirm it was Follicular Non-Hodgkin's Lymphoma....not the one I wanted in the cancer lottery.

    It's funny, I'm a soldier on kind of person and have probably had some symptoms for ages and just brushed them to the side...I mean who stops when they are fatigued? Who worries when they are short of breath when exercising? Who stops when they have a bit of joint pain or other pains in the body? The only symptom I wanted was the sudden, unexplained weightloss and I didn't get that one!!! But that long weekend was a very long weekend and I just went with not feeling great and found solace watching movies on the couch, oh and drinking for purely medicinal reasons of course!!

    Tuesday, 8 May 2012 saw me back at work telling my boss that I had cancer and I would need to leave work early that day to meet with my oncologist. As I was hearing these words come out of my mouth they sounded foreign to me, like really? Is this really happening? My boss was great, told me to take any time off I needed and I told him I just wasn't sure when I'd be back. I took my housemate with me to the oncologist, a second pair of ears for listening and a second enquiring mind. The oncologist showed me my CT scans which revealed I had the cancer in all of my lymph nodes, not just confined to one area. My mind started screaming at me going "this isn't good...remember what you read on google". But I ignored my mind and kept listening instead. The oncologist said that we needed to stage my cancer, referred me for a PET scan and a bone marrow biopsy and asked me about harvesting my eggs.

    Wedenesday, 9 May 2012 my housemate dropped me at the hospital for my PET scan. After the PET scan I headed up to HOCA (Haematology and Oncology Clinics of Australia), for my bone marrow biopsy. On Friday, 11 May 2012 the receptionist called me to tell me that she had booked me in for a portacath to be inserted on Monday and the doctor called and revealed that I did have cancer in my bone marrow, meaning that my final diagnosis is Grade 1-2 Stage IV Follicular Non-Hodgkin's Lymphoma.

    Monday, 14 May 2012, I spent the morning in bed worrying about the portacath and then headed to the hospital. I headed in for the portacath surgery under x-ray and the twilight sedation they gave me didn't work. It was a harrowing experience feeling everything they were doing and just crying through the whole thing, made just that little bit more bearable by the lovely nurse who held my had and wiped my tears with a tissue and kept whispering "I'm so sorry, you shouldn't be here".

    Thursday 17 May 2012 I headed to the cancer clinic for my first session of Mabthera and Friday 18 May 2012 I had my first round of CHOP.

    I have now had four rounds of R-CHOP and I head to have my scans and another bone marrow biopsy on Thursday, 2 August 2012 as my Oncologist said I should be in remission after round 4. I have massive fears that the chemo hasn't worked, that I won't really be in remission. I'm really over being "Cancer Girl", I'm sick of feeling awful, I hate having no hair and I'm thankful for finding this place where so many of you I"m sure know exactly how I'm feeling.

    Thank you for allowing me to pour my heart out.
    Hi Cozzie
    Welcome to the place where no one wants to be. you have already met Kermica, Bankwalker and Eyam, I am sure the others in the FL crowd will drop in to give you some support soon. Be prepared to have your socks knocked off with a barrage of information, such is the nature of FL.
    Its not easy Cozzie but its doable. FL has always been considerd incurable but recent developments in treatment have given indications to all of the FL crowd here and the entire medical establishment that the game has changed and a cure is now available.

    Anyway I will let the others introduce themselves.

    good luck
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  8. #8
    Senior User Gillian's Avatar
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    Hi Cozzie,

    You have written your story so well and with so much detail. Thank you so much for sharing all that with us because we can all help each other. I have experience, more than knowledge, but am learning along the way. This forum has taught me so much. If I have a question now I ask here, instead of googling and I am so grateful for the knowledgeable replies that I get back.

    I was diagnosed with grade 1, stage 3 (unknown bone involvement due to failed biopsy) follicular non-hodgkins lymphoma. Face (3cm), both sides of neck, above left collar bone, under both arms (don't know those sizes) and stomach (13cm x 7cm).....oh crikey! I finished 6 cycles of R-CVP on 7th June 2012. I was supposed to have 8 but the CT scan showed total reduction after just 4 cycles. I am due to start Rituximab maintenance on 13th September.

    It is worrying waiting on the results of scans, but I am sure that the R-CHOP has been doing it's job well. When I got the results of my clean scan the consultant said ...'see, I told you it would all just melt away!' He is such an character!

    I know what you mean about being done with it all. It does take it's toll. After cycle 5 I had worse side effects and I just couldn't face number 6. Even though I knew it was the last one. Number 6 was a breeze. What was that all about lol? It's only natural to be peeved off from time to time. Isn't it great though that you have already battled the lymphoma with 4 cycles of chemo. Good on you!!! The scan will reflect this.

    Whenever I am feeling down about my situation I try to tell myself that thank goodness the lymphoma was found. I laughed at your comment about the weight loss. I got the fatigue and night sweats, but no weight loss. Like seriously....if I have to have this why couldn't weight loss have been one of the 'b' symptoms lol.

    I, also like you, have an amazing, supportive family and friends. Sometimes though you just want to share with others who totally understand. This is a great place for that. I wish you all the best and please let us know how you get on.

    Onwards an upwards!
    Grade 1, stage 3 Follicular Non-Hodgkins Lymphoma.
    DX 31st Jan 2012, staged 15th Feb
    Complicated 3cm mass parotid/jaw region, enlarged nodes in both sides of neck, left supraclavicular, under arms , 13cm x 7cm mass in stomach.
    BM unknown due to failed biopsy
    1st course of R-CVP 16th February 2012
    CT scan after 4th cycle:- NED
    6th and final R-CVP 7th June
    Maintenance therapy started in Sept 20th (Rituximab) every 2 months for 2 years

  9. #9
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    Looking back on when I first found out I had cancer, shock #1. Then when I asked "how many nodes were enlarged", answer "more than we can count", shock #2. Bone marrow involvement, stage 4, shock #3. I asked "how many stages are there", answer "4", shock #4.

    Now most people I know tell me they are shocked I am doing so well. In remission, 10 more Rituxan treatments to go and then hopefully I will cruise along for 32 years. My goal is to live to see my 80th birthday. Doc says I should be realistic. I am more serious than he knows. I made all the stage 4 cancer plans. Estate planning, wills, deeds, insurance, ect. Now I am making one year plans and 5 year plans. Expanding my business. Buying property to flip/rent. Taking classes to aid myself at my full time job. Trying to keep my body and mind busy and avoid drugs and my recliner. I have good days and bad days. I think of cancer too often. I am a kindler gentler version of my former self. I guess the cancer gave me more patience and understanding. Tools I'll need for the next 32 years.

    I hope your able to see beyond these treatments soon.
    Age 50
    Follicular Non-hodgkins lymphoma Stage 2 on 10-28-2011
    Upgraded to Low grade follicular non-hodgkins lymphoma Stage IV on 11-11-11.
    Cancer in lymph nodes found in neck, back of abdomen, between both lungs and cancer cells found in bone marrow test.
    Prescribed Treanda and Rituxan, 4 months. To start 11-28-2011.
    Remission 2-17-2012
    Rituxan treatments start 4-25-2012, once every two months for two years
    Learning as I go.

  10. #10
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    Chemo I don't know it you read my story but I was stage 4 as well with enlarged spleen and marrow involvement. I wasn't including other forums more that stage 4 in blood cancer is not as bad as stage 4 in a solid Cancer. Lymphoma os often found when it's stage 4.

  11. #11
    Administrator Top User ChemoMan's Avatar
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    Hi kartoz

    its OK...I am not annoyed anymore.

    The thing is don't compare us to anyone else here, especially when it comes to other cancers...it's not fair on them and not fair on us and others will get annoyed, this time it was me but it could have been 1000 others who responded like that.

    It is obvious you are one tough cookie, but the thing we learn around here is that everyone is different and everyone reacts differently. Something to remember while you are here.

    Stage 4 is tough no matter what the cancer. You are an example to others at stage 4 that this can be done and done with guts and determination and a fighting spirit. Disregard my previous comments as you are as welcome here as anyone else. It does take a while to get into the spirit of these forums but i can assure you others will find strength in your posts.

    Cheers
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  12. #12
    Administrator Top User ChemoMan's Avatar
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    Hi kartoz

    My avatar has more than one meaning
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  13. #13
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    Thank you all for your very warm welcomes. Just a quick note to let you know that I should find out the results of my scans and bone marrow biopsy this Thursday when I head back in for round 5 of chemo....so fingers crossed. On the whole I'm feeling pretty good though.

    Now if I could just find a way to instantly grow some long luscious locks this whole cancer thing wouldn't be so bad!

    Thank you again.

    Cozzie
    Coralie
    Stage IV Follicular Non-Hodgkin's Lymphoma diagnosed April 2012
    6 rounds R-CHOP
    Remission after round 4
    Waiting to have stem cell harvest

  14. #14
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    Quote Originally Posted by ChemoMan View Post
    Believe me kartoz its scary. This is not a pissing contest so don't include the other forums, they won't appreciate it, nor will we.

    Cheers
    Chemoman, you should pull this reply to Kartoz. I think you came across too harsh, and why include this on Cozzie's brand new thread? There is no reason to come out swinging. I didn't take Kartoz's remark the wrong way and knew exactly what he meant.

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED!

  15. #15
    Senior User
    Join Date
    Feb 2011
    Posts
    491
    Hi Cozzie. I was diagnosed in January of 2011 with follicular lymphoma, grade 1, stage 3. I had one 2cm node on my neck, and discovered after the PET scan one additional small node in my groin. Funny, but I was one node away from being Stage 1. That was a bummer.

    Both of my nodes were removed for biopsy, so I had 5 months or so of a weird sort of NED. Then on a follow-up PET scan, two new tiny nodes showed some low activity - both in mirror-image locations from my first two. I guess my system needed to replace the ones that were removed. It was fairly weird. But, my doctors were not at all concerned. To them I was still very low tumor burden, low grade indolent disease. I was given the choice of observation, or early Rituxan only if I wanted. I mulled over this for about ten months, and after extensive research I concluded that the odds were in my favor to do the Rituxan only. If anything, I hoped it would give me a "reset," and propel me into the future farther without any need for more toxic treatment.

    After the four weekly doses I had no sign of any disease. In the words of my oncologist, I had "the scan of a completely healthy person." At that point idealized I was fairly lucky to have achieved a complete response to the Rituxan, so I decided to follow the very impressive SAKK protocol, which was a solid European study for early Rituxan treatment (there were several arms to that trial). This involves four additional doses total, one dose every two months.

    Rituxan was a total and complete non-event for me. SIMPLE. I had zero reaction, zero side-effects, and could not tell I had anything beyond just saline in the IV. I was a bit embarrassed actually after all the indecisiveness I had. I have gone on five mile runs the day after treatment. For me, nothing to it. And it obliterated my minimal disease.

    My plan is, if any nodes show activity in the future I will just go in and pop it with four more weekly doses, as they do in the RESORT study under Dr. brad Kohl. Or, if I ever get the indication that Rituxan may not quite do it, I will have RIT with either Bexxar or Zevalin. If dr. Oliver Press's alpha-emitter RIT is ready by then (it goes into human trials in two or three years), I will certainly do that. Everything points to me having way longer than three years from Rituxan only (in the SAKK trial 50% of the folks like me are out past eight years now), so this should not be an issue. Google "the Press Lab" for more info on this.

    You will see a lot of talk about watch and wait, and "saving Rituxan until you really need it." This was a moot point for me however, because that is in reference to Rituxan used in combination with chemo. I have NO plans to ever have chemo, which could be a thing of the past for follicular lymphoma in ten to fifteen years anyway if we are lucky. Of course, many people need chemo NOW, and it saves their lives. For me though, the goal is, low-toxicity, targeted therapy, and avoidance of cytotoxic therapy if I can at all avoid it. RIT could very well be curing people so that is the long term plan if it is necessary.

    Good luck!

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED!

  16. #16
    Newbie New User
    Join Date
    Jul 2012
    Location
    Brisbane, Australia
    Posts
    7
    Hi all

    I just wanted to let you know that I've just completed round 5 of RCHOP and my oncologist told me that my scans and bone marrow biopsy show that I am in COMPLETE remission!! I'm so thrilled. It will make that last round of RCHOP so much easier to take! I will then have a dose of just the C and a bone marrow harvest for future stem cell transplant if needed, followed by two years of mabthera. Now I have just asked that all my friends put it out there to the universe that my remission lasts a minimum of 20 years.

    Thank you again for all your kind words and support.

    Cozzie
    Coralie
    Stage IV Follicular Non-Hodgkin's Lymphoma diagnosed April 2012
    6 rounds R-CHOP
    Remission after round 4
    Waiting to have stem cell harvest

  17. #17
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Location
    NSW Australia
    Posts
    9,227
    Woohoooo. Goodonya!
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

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    Out of all the things I have lost, I miss my mind the most.

  18. #18
    Regular User
    Join Date
    Mar 2012
    Location
    Barcelona
    Posts
    47
    Congratulations, I'm sure number 6 will sail by
    Jul 2010 lump L groin. Jul 2011 lump R clavicle. 2 x FNA negative. Blood tests all negative. X-ray Jan 2011 : mulitple enlarged nodes. Excissional Biopsis Feb 2012 : lymphoma. Staged IV grade 3a fNHL. Felt more or less fine throughout! It was all some dreadful mistake (mixed up medical records?), but just in case humoured the doc by doing 6 x RCHOP starting Mar 2012. CR confirmed after 3 cycles. Completed 6 cycles Jul 2012. CR reconfirmed Aug 2012.

  19. #19
    Administrator Top User ChemoMan's Avatar
    Join Date
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    Location
    South Australia
    Posts
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    Quote Originally Posted by Cozzie View Post
    Hi all

    I just wanted to let you know that I've just completed round 5 of RCHOP and my oncologist told me that my scans and bone marrow biopsy show that I am in COMPLETE remission!! I'm so thrilled. It will make that last round of RCHOP so much easier to take! I will then have a dose of just the C and a bone marrow harvest for future stem cell transplant if needed, followed by two years of mabthera. Now I have just asked that all my friends put it out there to the universe that my remission lasts a minimum of 20 years.

    Thank you again for all your kind words and support.

    Cozzie
    Excellent stuff Cozzie. Onya Thats what we like to hear
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  20. #20
    Senior User Gillian's Avatar
    Join Date
    Feb 2012
    Location
    UK
    Posts
    228
    Excellent news Cozzie!!! Happy days so pleased for you
    Grade 1, stage 3 Follicular Non-Hodgkins Lymphoma.
    DX 31st Jan 2012, staged 15th Feb
    Complicated 3cm mass parotid/jaw region, enlarged nodes in both sides of neck, left supraclavicular, under arms , 13cm x 7cm mass in stomach.
    BM unknown due to failed biopsy
    1st course of R-CVP 16th February 2012
    CT scan after 4th cycle:- NED
    6th and final R-CVP 7th June
    Maintenance therapy started in Sept 20th (Rituximab) every 2 months for 2 years

 
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