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Thread: New in TN

  1. #21
    Senior User
    Join Date
    Feb 2011
    Posts
    499
    Bank, your other possible option is Radioimmunotherapy, or RIT for short. There are two options - Bexxar and Zevalin. Depending on your level of disease, you may want to inquire about it. Based on the data, RIT is MUCH MUCH more effective when used EARLY, not as later salvage therapy. And it is only two doses over two weeks - no side effects of chemo, and the treatment may very well give a much more lasting response than chemotherapy. If you would like to learn more, PM me and I can email you a lot of information about it. It is certainly worth talking to your oncologist about. I do know that if I ever qualify for anything beyond just Rituxan, that will be what I will do, no questions asked. Some fear the long-term effects of the therapy, but there is nothing conclusive to suggest that RIT has any more lasting negative effects than chemo, which we know is highly toxic. I won't get into all of the debate here, but am happy to tell you more.

    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! 1/15 NED!

  2. #22
    Senior User
    Join Date
    Oct 2011
    Location
    Tn
    Posts
    387
    Well, today was my first day back to work since my testing and cancer diagnosis.
    My office was flooded with people and phone calls most of the day. I have not cried since this bad dream started. I kept thinking I needed to stay strong for my wife.

    Well, today that did not go so well. Today, I had 4 -6 people in the office at one time. They were all giving me words of encouragement and then they began to tell me how much they all thought of me and offered me thier sick leave thru the (leave transfer program) our employer has available. I got all choked up and had to leave before they saw me crying. They all knew I was crying. Not like me at all. I don't know if it is stress or the fact I am tired but I went outside and cried for 20 minutes. Not feeling sorry for myself at all but kinda sad all over. Like I know I am dying and and not being able to do anything about it.

    The last few weeks she has protected me from all the phone calls, emails and text messages. I now know how much she had been doing for me. I realized how many people had been in touch with us the last few weeks. The rest of the day was just as stressful. One at a time dropping by to visit and tell me if I needed anything to let them know. Many offers to give me sick leave. I consider myself blessed but the another side of me is upset that my work life has become so sad. I feel like everyone thinks I am gonna fall over any minute. I can see the pity in thier eyes. I felt like my eyes were welled up all day and my lip quivered so much that I had to stop talking to people toward the end of the day to keep from breaking down again.
    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.

  3. #23
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
    Posts
    4,725
    Bank, what happened to you was normal on both sides. If you have been in your job for a while and people have come to respect and like you, then they are going to try to do what they can to help you. For your co-workers, that is the offer of leave if you need it. Remember for anyone who hasn't been where we are, the big C word is all terrible, all horror, all the time. We who live it know that is simply not the case but it is almost impossible, in my experience, to help a person not exposed understand that especially right after one is diagnosed.

    For you, today was a highly emotional, very tough day to go through. You know you have cancer, as does your family, but today you had to face it through the eyes of all those other people you have interacted with for so long. Their fear for you (and of being you) was amplified and reflected right back at you. I rmember one day, sitting on the stool in my kitchen responding to a post on this Board and, for whatever reason, I experienced a wave of emotion in me unlike any I have experienced before or since on this journey. Tears, terrible sadness for the change in me, fear for my family, all of that. It passed and I go on living my life with cancer, not dying from it. That is what your co-workers don't get yet...the fact that you are lucky enough to have a cancer that can be treated, that can be put into remission, that can be lived with...as time goes on they will understand better and your days at work will be easier. In my job, we barely speak of it these days, beyond the occassional "how are you doing?"

    Good health,

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

    Age 64
    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.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.

    Remember the Rules!

  4. #24
    Senior User jmarek's Avatar
    Join Date
    Apr 2011
    Location
    South Milwaukee, Wisconsin
    Posts
    355
    Welcome Bank Walker,
    Sorry to meet under this circumstance. I am glad to see that you have some flexibility with your work situation in case you need time off for this thing. I was also lucky enough to have a good work from home situation which helped out. I struggled a bit through it as my focus and mind were not always there fully, but I appreciated having the distraction every once in a while to focus on something else. Financially this thing has still hit me hard and I am trying to do any modifications I can to my work insurance that is possible such as adding a little bit to flex spending and bumping up my short term disability from 14 days to 7 instead. Not sure if its necessary or not, but I am trying to be as proactive as possible to anything that can happen.

    Take Care,

    Jeff
    Age 40
    Stage 4 Non-Hodgkin s Large B Cell Lymphoma
    Diagnosed on March 30th 2011/Staged on April 6th

    R-CHOP treatments
    First treatment: April 12th
    Eighth treatment: September 8th
    Have been in Remission since 9/2011

    "Yesterday is history, tomorrow is a mystery, and today is a gift, that's why its called the present"
    Dr. Wayne Dyer

  5. #25
    Experienced User
    Join Date
    Oct 2011
    Location
    Michigan
    Posts
    54
    Bank,
    I have been Lurking the past couple of weeks and I have been following your new journey. I too have fNHL and have gone through the same feelings you experinced the past week. It's a natural reaction your going through. I have had 2 recurrent dx. and still feel the same way each time. The coworker thing has also happened each time. The leave of absence offer... and people ask why I don't take time off.
    I tell them all the same it's part of "fighting the fight". I can not let this nasty C word have it's way with me. I stare at it in the face and control what I can control.
    And it is amazing what our great spouse's can do for us. I think we all try to be strong and protect them but they are doing the same.
    Hang in there Bank! You can beat this with a positive attidude.
    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 Treament??

  6. #26
    Senior User
    Join Date
    Oct 2011
    Location
    Tn
    Posts
    387
    Thanks for the kind words. I really need it right now.

    Today was better than yesterday but still a chore. I have told my cancer story so many times I feel like it is a rehearsed speech. I too have had people asking "why are you at work"? Don't you have leave? Are you ok? How long do they give you?

    My standard answer is to tell them that I have been trying to save as much leave as possible until I really need it. I thnik if I stay home and withdraw away from my life I will get more depressed about the situation. I need to tough it out. If I can take one day at a time, and maintain my family and friend network I will be way ahead of the game. My wife has really showed her true colors. If I ever had any doubts about her sticking with me thru the rough times they have been but aside.
    She has been so supportive. I want to get better for her as much as for myself.
    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.

  7. #27
    Senior User
    Join Date
    Feb 2011
    Posts
    499
    Walker, do you have a full diagnosis you can give yet? Are you Stage 1? Have you completed all of your tests? Sorry if I missed something somewhere.
    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! 1/15 NED!

  8. #28
    Senior User
    Join Date
    Oct 2011
    Location
    Tn
    Posts
    387
    No official stage yet. I am not 100% sure how they figure it but they found a small mass on my right side neat my belt line. They also took aortic lymph nodes from my chest area at the same time. Some from both sides. They said they could not remove all that were enlarged because there were more than we could count. The oncologist is doing the bone marrow test this coming Tuesday, he thinks it is also in my bones. He says I may have had this cancer for years. He specifically mentioned Stage 4 if it is in the bones. With all this said I am still unsure what it all means as far as treatment and what to call it. I still have more questions than answers. I am not sure if is still called lymphoma if it is in your bones? I have been asked many times if I think it is leukemia? I have no idea. Super stress not knowing.
    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.

  9. #29
    Senior User
    Join Date
    May 2011
    Location
    Chicago IL
    Posts
    328
    I have a different indolent nhl, I was diagnosed pretty far along showing significant symptoms, I did the standard frontline R-CVP and I didn't actually miss any work
    (I couldn't, I own my business) so don't think you are going to be disabled or bed ridden when you start treatment

    I had nhl for years before diagnosis, skipped all the watch and worry. 40% of all nhl is FNHL, you will get tons of support here from people with fnhl who have gone thru anything
    you could possibly go thru

    Mark
    Chicago 54 years old
    LPL/Waldenstroms indolent nhl, dix Friday the 13th 5/13/11
    R-CVP, 5/23/11 6 cycles, 12/20/11 PR, w&w for now

  10. #30
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
    Posts
    4,725
    Good morning, Bank. From your description you are probably going to be told that you are at least Stage 3. The definition of S3 if you have involved nodes above and below the diaphragm, and it sounds like you do (so do I - of itself it is no big deal). If your marrow is involved, that would move you to Stage 4 (still not the end of the world, by any means).

    Most fNHL patients, when they go into therapy, are able to maintain their life and work styles. One of the things to tell your co-workers, if you choose, is that the cancer you have is slow growing and is treated as a chronic disease. It is really not much different than having diabetes, hypertension, heart disease or a host of other things that your co-workers no doubt can identify with...

    First of all, though, get through the staging, speak with your doctor and get the facts of your specific case. That will allow you to put a plan together with your onc which will give you the bet prospects for a long and fruitful life. That is what planning a strategy for fighting fNHL is al about - how to live a long and fruitful life. It is pretty easy to let it take you mentally to where it becomes the dominant factor in your life but there is no reason to allow that.

    Example - yesterday I was down at the river early because our 7th and 8th graders were rowing in their championship race. Today, back to the river at 9 to oversee the dock removal process for winter (I am the president of the rowing club) and then on to the fall season banquet tonight. I am determined to live with this, not be dominated by it. You can do the same after the diagnostic dust clears for you.

    Good health,

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

    Age 64
    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.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.

    Remember the Rules!

 

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