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Thread: Stage 4 follicular

  1. #1
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    Stage 4 follicular

    Hello All,
    I was diagnosed with Stage 4 Follicular Lymphoma in Feb of this year when I was experiencing pain and a knot in my groin that I was praying was just a hernia ( I had Testicular Cancer in Feb of 89 at the age of 18 that was discovered because of a twisted testicle). I am brand new to this site, I was somewhat affraid to talk about my cancer even though I knew it would probably help me in many ways. I was affraid the fact of talking about it would make me more depressed than I already am. I try my best not to think about it but as I am sure everyone knows that does not work so good. The enlarged node in my groin is still intact and has not been removed nor am I recieving any treatment other than the dreaded watch and wait. I have leg and back pain as well as extreme fatigue ( I sleep a bare minumum 12 hrs per day ). Does that sound like normal symptoms because the vibe I get from my oncologist is that he does not understand why I would be in pain. I also sweat a lot but normally not during sleep and in recent weeks I have not lost but gained 14 pounds from a weight that I have maintained for most of my grown life. My last PET in August ( the second one I have had ) showed small growth in the node in my groin and one near my spine. Anyone heard of W&W at Stage 4? Also any thoughts I would like to hear, I am not completely understanding the ins and outs of all this and any info would be greatly appreciated.
    Last edited by Didee; 12-09-2011 at 04:57 AM. Reason: Did wrong spelling when I moved this post to its own thread.

  2. #2
    Administrator Top User Didee's Avatar
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    Hi, welcome to the forums but I am so sorry you have the need to find us.
    I have moved your post to its own thread here.
    May I ask did you have a biopsy on a node to get this diagnosis?
    There are some here on watch and wait who will be able to help you better than I can.
    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.

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  3. #3
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    Didee,
    Yes I had a biopsy on the node in my groin and a PET showed activity in my upper and lower body, then once they made the follicular diagnosis they did a bone biopsy from hip to determine if it was stage 3 or 4.

  4. #4
    Administrator Top User Didee's Avatar
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    Thanks for that.
    Some find it very hard to get their heads around watch and wait but it seems that many too eventually do and it is treated like a chronic condition to live with till any progression happens to warrant it. I read of so many going 5, 10 years or more before treatment is necessary. I will leave it to them though to chime in.
    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.

  5. #5
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by eric1970 View Post
    Hello All,
    I was diagnosed with Stage 4 Follicular Lymphoma in Feb of this year when I was experiencing pain and a knot in my groin that I was praying was just a hernia ( I had Testicular Cancer in Feb of 89 at the age of 18 that was discovered because of a twisted testicle). I am brand new to this site, I was somewhat affraid to talk about my cancer even though I knew it would probably help me in many ways. I was affraid the fact of talking about it would make me more depressed than I already am. I try my best not to think about it but as I am sure everyone knows that does not work so good. The enlarged node in my groin is still intact and has not been removed nor am I recieving any treatment other than the dreaded watch and wait. I have leg and back pain as well as extreme fatigue ( I sleep a bare minumum 12 hrs per day ). Does that sound like normal symptoms because the vibe I get from my oncologist is that he does not understand why I would be in pain. I also sweat a lot but normally not during sleep and in recent weeks I have not lost but gained 14 pounds from a weight that I have maintained for most of my grown life. My last PET in August ( the second one I have had ) showed small growth in the node in my groin and one near my spine. Anyone heard of W&W at Stage 4? Also any thoughts I would like to hear, I am not completely understanding the ins and outs of all this and any info would be greatly appreciated.
    Hi eric1970

    Sorry about your diagnosis but I think you found the right place. A number of our members have FL and they will help you to understand what is happening to you.

    I have 1 question to ask and that is what type of biopsy did you have...was it a fine needle biopsy?

    RE treatment there are many options for you to chose from but I will let the people with FL guide you through that, be prepared for a steep learning curve

    Cheers
    Age 57
    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.

  6. #6
    Administrator Top User Kermica's Avatar
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    Hello Eric, and welcome to our Forum. I am one of those folks who have FL, I am Stage 3 and have been on W+W for over two years now. My friend ChemoMan is correct about the learning curve and that is because, basically, there is no one course of therapy for FL that will guarantee a positive outcome. The nature of the disease is that it is very slow growing and, as a result, most chemo drugs do not kill it completely. Instead, when the cancer has advanced that it is impacting organ function or circulation, then chemo is used to knock it back into submission. Unfortunately for us, it almost always comes back down the road. Regarding your S4 status and when treatment should begin, have you had a second opinion done at a major research center which is focused on lymphoma as one of its specialities? If not it is worth while to do so - I was originally diagnosed as S4 and after my second opinion at Sloane Kettering in New York was restaged to S1. That changed everything for me regarding my treatment path.

    Now, that said, one of the advances over the past ten years has been the introduction of Rituxin, a monclonal antibody derived from mice, which has really changed the game for us. There is a great deal of discussion right now in the research community about what the best way to use Rituxin is, both in combination with chemo and by itself. There is also a lot of development around the use of radioimmunotherapy using compounds such as Bexxar or Zevalin. Here is a link to a site which will really provide the lowdown on FL, its treatment options and the research going on about it: http://www.nhlcyberfamily.org/types/follicular.htm

    As to W+W, it is not uncommon to have S4 patients using that strategy if their lifestyle is not being overly impacted, they are in general good health and they can manage it psychologically. The reason it is considered equally valid with other approaches is that there are still no studies that show early intervention produces a better long term outcome. There are studies out there that indicate a longer period between relapse if Rituxin is applied early on but there are also issues associated with that treatment path, as there are for all of our choices. So, since I am busy with work, family and outside interests I have chosen this path until the results of our (my care team and I) active surveillance indicate that I need to consider a different way. I get PET scanned every 4-6 months to assess things and, so far, there has been no advancement of the cancer. Nest scan is scheduled for early January.

    That brings me to my last point about W+W and that is the psychic toll it can take. Many patients enter therapy because they cannot manage the knowledge that they have active cancer in their bodies and they are doing nothing about it. The reality is that you are doing something which is actively monitoring it and then applying therapy when they are needed. Chemo and all other therapies have an element of toxicity that can be more damaging than the cancer itself when it is indolent, which FL is unless it transforms to DLBCL, which it does in about 30% of cases. If that happens, you hit it with both guns, of course.

    We are here to help, Eric, with information, support and by providing a forum for venting or ranting when needed. Please let us know how else we can help and best of luck with everything.

    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!

  7. #7
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    Chemoman,
    I believe it was what you have refered to as fine needle, I was told to turn my head the other way due to its length. It made a sound similar to a stapler going off after it was injected into the node in my groin when he had it where he wanted it, if I remember correctly it was done 4 times.

    Kermica,
    I was intially diagnosed at my local hospital as stage four and before they made that determination the oncologist said before the marrow biopsy that chemo would be used. After it came back that indeed it was present in the marrow she I suppose had done some research and decided against treatment, gave me the diagnosis of stage 4 and ask me if I would be interested in seeing a oncologist in Indianapolis which I did and continue to do so rather than seeing her. I.U. Simon Cancer Center is where I now go and it is still said to be stage 4. My last visit just had blood work, and he stands by W&W is the best avenue for me that the issues that I would endure from treatment would not out weigh the problems I am having. I kinda took that as getting sick from treatment would just be a trade off and I would be better off waiting until the pros out-weigh the cons, which I totally understand the more information that I obtain. The mental aspect of W&W is a rough one indeed. One problem that amplifies it for me is that no matter how much I am able to put it in the back of my mind, it is present visually for me everyday everytime I go to the shower where if it were located in another area it wouldnt be such a reminder, however had it not popped up where it did I still may not know that I have cancer again.

  8. #8
    Administrator Top User Kermica's Avatar
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    I know what you mean about the visual, Eric, my original biopsied node was also in my groin on the inguinal line so was evident visually until it was removed. Incidentally, the preferred biopsy method for lymphoma is an excisional biopsy which is a (usually) minor surgical procedure to remove the entire node or nodes in question. Was yours deep in the body? That would be one reason to use FNA instead.

    I think you have things just right as to why your doctor is not rushing you into chemo.W+W is tough but I find it fairly easy to manage on most days by asking myself one question each morning - "am I doing the things I want to be doing today?". So far the answer is yes and, since I really do live a life full of activities from work to family events to a lot of volunteer stuff, so far it is still right for me. I am sure others will chime in who have "been there, done that" and some of those opinions are almost certain to differ but that is part of the beauty of this community.

    I am very glad to hear that you have had more than one opinion. The fact that you are S4 doesn't mean the same things as it does for folks who have organ based or soft tissue cancers, by the way. It is not unusual for FL to be found as yours was, with minimal physical symptoms. Indolent lymphomas grow so slowly that they often get well established at the molecular level before we become aware of them. You have probably been carrying the little buggers around with you for years. So, hang in there and keep participating here. You will be amazed at how your knowledge base will grow as a result.

    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!

  9. #9
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    Kermica,
    When I had the biopsy it was not known that it was lymphoma just that cancer was present all over the map of the PET it was said that I "lit it up like a christmas tree." The fact that the enlarged node was in my right groin area and that my testicular cancer was on the left I was sent to my neurologist because of the threat of a reacurrance and he was the one that ordered the biopsy. As far as removal of the node in my groin area I do not think my oncologist is going to remove it. In the beginning it was discussed the possibilty if it became a really big problem, but it has not been discussed since even though where it is located right in the crease of the inner thigh it causes leg pain.
    Eric 41
    Testicular Cancer Feb 1989: Left testicle removed and lymphadenopathy of nodes in back (nodes found to be clean). No futher treatment.
    Stage 4 Follicular Lymphoma: Feb 2011
    Last PET Oct 2011: Small growth of nodes in groin and back.
    Treatment: Watch & Wait

  10. #10
    Administrator Top User ChemoMan's Avatar
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    Hi Eric

    Try and get another opinion on the diagnosis. From what I have read it is difficult if not impossible to diagnose FL with a fine needle biopsy. FL is diagnosed by the arrangement of the cells in the node, in other words by the structure of the affected node. A small sample taken by FNB will not show that structure. I don't want to alarm you so no panic please, but try and get the slides to another lab if you can and discuss getting that inguinal node out for proper investigation. We have a member who was originally diagnosed with FL and he had Burkitt's so it does happen.

    Good luck
    Age 57
    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.

  11. #11
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    The one thing I've noted from this thread so far is that there appears to be some confusion between "stage" and "grade". "Stage" relates to the locations where cancer is present - Stage 1 is limited to one or a few nodes, concentrated in one small area. Stage 2 is more widespread, but limited to either above or below the diaphragm. Stage 3 is on both sides of the diaphragm, and Stage 4 is not only in nodes on both sides of the diaphragm, but in other sites as well (typically the spleen, bone marrow, but other locations too.) You don't determine the stage through biopsy.

    "Grade" refers to the histological makeup of the cancer itself. Grades 1 and 2 are indolent, slow growing versions and are clinically interchangeable, with the same treatment prescribed for either. Grade 3 is more aggressive, and is sometimes treated differently. You can have Grade 3, but Stage 2 disease, for example. Fine needle aspiration biopsies are very frequently inconclusive in determining the grade of disease - an excisional biopsy (surgery to remove an entire node) is the best way to determine the actual type of lymphoma, and its grade.

    It's very common to not diagnose lymphoma until it reaches Stage 4, if it isn't interfering obviously with body function. Most people who are diagnosed at Stage 1 are typically seeing the doctor for some other reason and it pops up on a scan. Also, it's typical for an oncologist to suggest watch and wait for Stage 4 disease unless there are complicating factors, because - at least right now - there hasn't been any documented proof that early treatment will make you live any longer, and many people prefer to push off the side effects of treatment for as long as possible. However, this approach is being debated due to the incoming results from various trials, and for some patients W&W may not be the best thing to do. But we don't know for sure yet.
    DX May 2010 fNHL - G1, S4
    TX - Clinical Trial through Fred Hutchison Cancer Research Center (U of Washington)
    6 cycles R-CHOP induction
    1 cycle Bexxar consolidation
    4 years quarterly Rituxan maintenance
    Consolidation completed Dec. 2010
    Clinical Remission declared Dec. 2010
    PET/CT - 2/22/2011 - NED
    BMB - 3/2/2011 - PCR-Negative; molecular remission
    CT scans semi-annually, latest 6/2014 - NED continues

  12. #12
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    Defens,
    Im my case, it was first diagnosed at either 3 or 4 by biopsy of the groin node and the PET/CT that showed activity on both sides as well as the upper and lower body. Then stage 4 was determined because a bone marrow biopsy revealed it was present there as well. One thing that I failed to add about earlier on reasoning to not remove the node was that leaving it can possibly be a gauge if it were to get larger would be a way of showing growth as well as the months in between scans. I have read that typically that 8cm or larger the node would be removed and the one in my groin is right there.
    Eric 41
    Testicular Cancer Feb 1989: Left testicle removed and lymphadenopathy of nodes in back (nodes found to be clean). No futher treatment.
    Stage 4 Follicular Lymphoma: Feb 2011
    Last PET Oct 2011: Small growth of nodes in groin and back.
    Treatment: Watch & Wait

  13. #13
    Top User shakifan's Avatar
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    Hey Eric,
    Sorry I'm chiming in really late here. Welcome to the board. I just wanted to say that I had a groin node that was enlarged and it did cause a lot of pain down my leg, and into my hip area. It actually limited my activity. Perhaps there is a way to just address that node that is causing you pain for now.
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11
    www.caringbridge.org/visit/jeannelawson1

    "Y un dia despues de la tormenta, cuando menos piensas sale el sol"-Shakira
    "One day after the storm, when you least expect it the sun will come out."

  14. #14
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    shakifan,
    That is kinda what is being done I was sent to a pain management dr. that has me on norco (basically lortab) 7.5-325 it has less aceophimine, i know thats spelled wrong but less of it to reduce possible liver problems. It effects my mobilty too, in fact I am sporty a cane the pain feels like its in my bones and I have said that even before the diagnosis and some of these drs look at me like I am crazy.
    Eric 41
    Testicular Cancer Feb 1989: Left testicle removed and lymphadenopathy of nodes in back (nodes found to be clean). No futher treatment.
    Stage 4 Follicular Lymphoma: Feb 2011
    Last PET Oct 2011: Small growth of nodes in groin and back.
    Treatment: Watch & Wait

  15. #15
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    Hey Eric,
    Welcome to this forum!
    I also have fNHL and am in the W&W mode currently, treatments I've had been radiation on two different areas where the nodes been removed. The main reason for the removal of the nodes were the pressure pain they caused in my neck and arm. One thing the radiation did do beside cleaning up the areas was the night sweats decreased dramaticaly. I used to have terrible nightly drenching sweats and now they are very spuratic.
    As far as the other B symtoms I still itch alot but it's manageable. The fatique is still there but not as bad as it was during the radiation treatment.
    I agree with the others for the W&W approach but it is a mind game. With the support of the forum and your friends and family I'm sure you will be able to conquer it if you decide it's right for you.
    Mark
    age 51
    Dx 9/2009 indolent follicular stage 2b
    node removed supraclavular - radiation
    Dx, 5/2011 recurrent
    node removed arm - radiation
    Dx, 9/2011 recurrent
    2- nodes Left axuilliry / 1- node para aortic
    Dx 11/28/2011 recurrent
    1- Right Axilla/1-Left Proximal Arm/1- sigmoid colon
    Dx 3/26/2012 Disease Progression
    increase SUV uptake in para aortic & Left axuillry
    New involved nodes - Left Supraclavular/Left & Right axuillry/Left inguinal
    Treatment to start 4/18/2012

  16. #16
    Top User shakifan's Avatar
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    I guess I was thinking along the lines of removing it (like amarklevy mentions below). Norco is pretty mild, but if that node is pressing on a couple of nerves it could really limit your movement. I know they encourage exercise as long as you feel well enough, but I have to tell you I had that enlarged groin node for at least six months before I knew I was sick and it interfered with any activity. I had a shooting pain down the front of my leg, and a shooting pain over to my hip. It caused great pain when I did Zumba (doubt you'll be doing that) or Pilates. I was even sent to physical therapy because they thought is was muscular. I guess I can see why they would not want to take it out, so they could watch it, but it would give them a good biopsy also. Just my thoughts. And don't be shy to tell the docs how bad it is making you feel if the norco isn't working.
    43 years old
    Peripheral T-Cell Lymphoma, NOS 4B 4/21/2011
    CHOP-21 to begin 4/26/2011 6-8 cycles
    ICE X 2, auto SCT 12/6/11
    www.caringbridge.org/visit/jeannelawson1

    "Y un dia despues de la tormenta, cuando menos piensas sale el sol"-Shakira
    "One day after the storm, when you least expect it the sun will come out."

 
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