Signature FNHL Grade? 4A and ?Date?

CountryGal7557
CountryGal7557 Member Posts: 164 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I've noticed some of you sign your name with type, grade, Stage and a date. What Date have you chosen and why? I'm wondering what I should consider my Anniversary and would think it would be Remission and no more chemo.

Date of Diagnosis?
Date of Chemo treatment? I was told @ Cancer Clinic, 1st day of treament I am considered a Survivor. that makes sense, but I still had cancer.

Date of Remission? Cancer Free?

For me there is a difference of 4 months, March 2010 Dx and July Cancer Free or Remission.

plus what do you call NHL after chemo is over since it's not curable, "Living with Lymphomas"

Janelle (FNHL - Grade? - 4A - Date) and mine is Indolent, not Fast or Agressive, is that the grade?

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    Signatures...
    Hi Janelle,
    I use my diagnosis date,June 16th 2010. I was diagnosed with Follicular Non-Hodgkins Lymphoma-Grade2-Stage3-TypeA-June 2010. Indolent-non symptomatic is TypeA. TypeB is considered agressive with symptoms...night swets, rapid weight loss,etc. Grade is determined by cell stucture size and prominence of size...small/medium/large- B cell..T cell etc. If you had a tumor surgically removed, your pathology report breaks down everything in fine detail. My PCP went over my report with me and hubby explaining everything and what it all ment. I also went on the computer and researched my brains to mush learning all I could before starting my chemo. The best research is right here with the group, by far!!! The reason we started doing this is to help others remember the kind of cancer we each have. Chemo brain has a way of making it difficult to remember. I'm not sure how to answer your ? "what do you call NHL after chemo is over since it's not curable"? I'll let someone else answer that. Not everyone signs at the end of their posts because their cancer is hard to breakdown in numbers. Well..I hope I helped.
    Love Sue
  • Michele23
    Michele23 Member Posts: 168
    #3
    Begining
    Hi Janelle,I actually had my cancer well over a year before diagnosis.Most use the date of diagnosis.They use the word survivor loosely in my view,but yes you are considered a survivor living with cancer.Using treatment dates for me is only so others can see the time lapse between treatment.Not sure of using the word cancer free as low grade is incurable,I free it just lays dormant for periods after treatment.Kinda like fighting a fire you can beat it back but sometimes it flares right back up.Hope this helps. Michele Dx.1995 Low grade Follicular stage 3 Local Radiation twice 1995/2008--Chop 1996-97--Rituxan/10=40total--Treanda/Rituxan now.
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #4
    Michele23 said:

    Begining
    Hi Janelle,I actually had my cancer well over a year before diagnosis.Most use the date of diagnosis.They use the word survivor loosely in my view,but yes you are considered a survivor living with cancer.Using treatment dates for me is only so others can see the time lapse between treatment.Not sure of using the word cancer free as low grade is incurable,I free it just lays dormant for periods after treatment.Kinda like fighting a fire you can beat it back but sometimes it flares right back up.Hope this helps. Michele Dx.1995 Low grade Follicular stage 3 Local Radiation twice 1995/2008--Chop 1996-97--Rituxan/10=40total--Treanda/Rituxan now.

    Thank you Sue & Michelle
    Thank you Sue & Michelle! That helps! My one year anniversary for DX was March 17th, today (April 8th) is my one year anniversary for 1st Day of Treatment (Rituxan) and the cancer began to die! =)

    Michelle, How did you know you had cancer well over a year? I've asked my oncologist how long I could have had NHL w/o knowing it and he said it's unknown, but it may be triggered from "sequence of stressful events" ha! All my life I've had stressful events (just like everyone else), so I've now accepted it's my week Immune System that could no longer handle stress. A couple situations that I was "not in control" pushed me over the edge emotionally, which I believe is what triggered it.

    Janelle
    FNHL-1-4A-Mar10 How did I do?

    Dx.March17 Low grade Follicular stage 4 Type A Treanda/Rituxan April 8th - August 26, 2010
  • miss maggie
    miss maggie Member Posts: 929
    #5
    CountryGal7557 said:

    Thank you Sue & Michelle
    Thank you Sue & Michelle! That helps! My one year anniversary for DX was March 17th, today (April 8th) is my one year anniversary for 1st Day of Treatment (Rituxan) and the cancer began to die! =)

    Michelle, How did you know you had cancer well over a year? I've asked my oncologist how long I could have had NHL w/o knowing it and he said it's unknown, but it may be triggered from "sequence of stressful events" ha! All my life I've had stressful events (just like everyone else), so I've now accepted it's my week Immune System that could no longer handle stress. A couple situations that I was "not in control" pushed me over the edge emotionally, which I believe is what triggered it.

    Janelle
    FNHL-1-4A-Mar10 How did I do?

    Dx.March17 Low grade Follicular stage 4 Type A Treanda/Rituxan April 8th - August 26, 2010

    Dear Janelle, See the bottom
    Dear Janelle, See the bottom of this post for exact dates in order. Less confusing

    I was feeling absolutely great. I was looking forward to playing some tennis and swimming at my summer club. It was the last weekend of my summer club. Saturday evening I had the worst pain in my abdomen, no memory of pain. My grandson Aaron was staying with me. He called 911. I was rushed by ambulance to the hospital. I had a CT scan which showed my small bowel perforated. I later found out this was caused by NHL. I had my small bowel resected. I was in the hospital 3 weeks on high doses of anti-biotics. What a nightmare. DX Sept 2009

    Then in Oct and Nov 2009 had bone marrow biopsy, negative, lump under tongue biopsed, negative. Pet Scan, not sure of DX.

    Dec 2009 - Rituxan, once weekely for 4 weeks. June 2010 - colonscopy, negative, pet scan negative. Dec 2010 pet scan negative. January 2011 my oncologist told me I am in remission. She doesn't expect the cancer to return. If it does it would in 4 or 5 years. I don't consider myself cancer free, just remission. Not sure what the doctor would say.

    Originally my DX was: stage 1, low grade, B cell, indolent NHL. I later found out a sub type is very important. My sub type is Extranodal marginal zone B cell, NHL

    DX Sept 2009 - stage 1, low grade, b cell, indolent NHL
    Oct and Nov 2009 - bone marrow biopsy negative, lump under tongue biopsed negative
    Nov 2009 - Pet Scan not sure what was there
    Dec 2009 - Rituxan, once weekly for 4 weeks
    June 2010 - colonscopy and Pet Scan negative
    Dec 2010 - Pet Scan negative
    Jan 2011 - oncologist informed me I am in remission-I don't consider myself cancer free. Not sure what the doctor would say.

    Sorry for the long post. Love Maggie
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #6
    CountryGal7557 said:

    Thank you Sue & Michelle
    Thank you Sue & Michelle! That helps! My one year anniversary for DX was March 17th, today (April 8th) is my one year anniversary for 1st Day of Treatment (Rituxan) and the cancer began to die! =)

    Michelle, How did you know you had cancer well over a year? I've asked my oncologist how long I could have had NHL w/o knowing it and he said it's unknown, but it may be triggered from "sequence of stressful events" ha! All my life I've had stressful events (just like everyone else), so I've now accepted it's my week Immune System that could no longer handle stress. A couple situations that I was "not in control" pushed me over the edge emotionally, which I believe is what triggered it.

    Janelle
    FNHL-1-4A-Mar10 How did I do?

    Dx.March17 Low grade Follicular stage 4 Type A Treanda/Rituxan April 8th - August 26, 2010

    I believe this statement...
    Hi Janell,
    I found this very interesting what you wrote, and I tend to believe it..(NHL)"may be triggered from sequence of stressful events". I fell down 11 stairs leading to my family room on Aug/27th/2009. Ended up needing Roator cuff repair, subsequent surgery took place on Nov 23rd/2009 for repair. It was a very hard surgery and therapy was intense afterwards. In Jan 2010 I found the first lump on my groin and also a small hard lump on my neck. Had an ultra sound done in Feb..groin only...and it showed 1 large swollen node and 2 small ones. Waited until my physical in May and my PCP had me get another ultra sound done..this one showed 3 more swollen groin nodes bringing the total to 6 now. At that time he decided a CT-scan was necessary...hence results showing 6 tumors in my groin, multiple tumors in my abdomen, 2 nodes on the side of my neck, and one larger tumor under my colar bone. Surgically removed the largest tumor on my groin and later after pathology came back I was diagnosed with FNHL-Grade2-Stage3-TypeA. It freaked me out how many nodes developed from Jan to May 2010. In August 2010 my onc found a new tumor along my jaw line so she stopped the "watch and wait" and scheduled me for chemo on Aug 31. I truely believe the fall down the stairs and rotator surgery triggered my cancer. I may be wrong, but that was one hell of a stressful traumatic year, so it makes sense to me. My onc said the cancer may very well have been growing slowly(indolent) before the fall,but afterwards, the stress and trauma excelerated cancer activity. What do you think?...Love...Sue (FNHL-2-3A-6/10)
  • Michele23
    Michele23 Member Posts: 168
    #7
    CountryGal7557 said:

    Thank you Sue & Michelle
    Thank you Sue & Michelle! That helps! My one year anniversary for DX was March 17th, today (April 8th) is my one year anniversary for 1st Day of Treatment (Rituxan) and the cancer began to die! =)

    Michelle, How did you know you had cancer well over a year? I've asked my oncologist how long I could have had NHL w/o knowing it and he said it's unknown, but it may be triggered from "sequence of stressful events" ha! All my life I've had stressful events (just like everyone else), so I've now accepted it's my week Immune System that could no longer handle stress. A couple situations that I was "not in control" pushed me over the edge emotionally, which I believe is what triggered it.

    Janelle
    FNHL-1-4A-Mar10 How did I do?

    Dx.March17 Low grade Follicular stage 4 Type A Treanda/Rituxan April 8th - August 26, 2010

    Cancer timeline
    Hi Janelle,I had a lump between my neck and collarbone.Had it checked many times but every dr said don't worry its nothing!!!!One day I made an appointment with a surgeon to get it taken out even she said before and after taking it out don't think its anything.Was always tired but heck back then I worked my butt off morning till night.Then came the itching.Had no computer so had no clue.All I was sure of was the lump just appeared after having this really really bad cold an stayed.May have been more like 2 yrs after looking back at paperwork.How are you feeling these days?I've had more side effects with this treatment then any before this,just one thing after another.Oh by the way yours and Sue's stressful lives sounds like mine.Take care,Michele {dx95 FNHL3}! 1995Biospy neck/local Radiation {stage 1} 1995 car wreck broken collarbone/jaw 1996Biospy under arm/groin+collarbone repair {stage3} Chop96-97 2000 Rituxan Oct.-Sept. 2003 Rituxan Mar.-Oct. 2004RituxanApr.-Oct. 2006 cheek biospy+RituxanMay-Jun 2007surgeryforehead 2008Radiation- -forehead 2008Rituxan Aug-sept. 2009 Rituxan Jan 2009 June surgery neck/parotid gland 2009 Rituxan July 2010 Rituxan Jan 2011Jan Treanda/Rituxan
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #8
    allmost60 said:

    I believe this statement...
    Hi Janell,
    I found this very interesting what you wrote, and I tend to believe it..(NHL)"may be triggered from sequence of stressful events". I fell down 11 stairs leading to my family room on Aug/27th/2009. Ended up needing Roator cuff repair, subsequent surgery took place on Nov 23rd/2009 for repair. It was a very hard surgery and therapy was intense afterwards. In Jan 2010 I found the first lump on my groin and also a small hard lump on my neck. Had an ultra sound done in Feb..groin only...and it showed 1 large swollen node and 2 small ones. Waited until my physical in May and my PCP had me get another ultra sound done..this one showed 3 more swollen groin nodes bringing the total to 6 now. At that time he decided a CT-scan was necessary...hence results showing 6 tumors in my groin, multiple tumors in my abdomen, 2 nodes on the side of my neck, and one larger tumor under my colar bone. Surgically removed the largest tumor on my groin and later after pathology came back I was diagnosed with FNHL-Grade2-Stage3-TypeA. It freaked me out how many nodes developed from Jan to May 2010. In August 2010 my onc found a new tumor along my jaw line so she stopped the "watch and wait" and scheduled me for chemo on Aug 31. I truely believe the fall down the stairs and rotator surgery triggered my cancer. I may be wrong, but that was one hell of a stressful traumatic year, so it makes sense to me. My onc said the cancer may very well have been growing slowly(indolent) before the fall,but afterwards, the stress and trauma excelerated cancer activity. What do you think?...Love...Sue (FNHL-2-3A-6/10)

    Trauma Accelerated cancer activity
    Sue....I absolutely agree with this statement "cancer may very well have been growing slowly(indolent) before the fall,but afterwards, the stress and trauma excelerated cancer activity." this scenario sounds like me.....

    I too was going through a stressful time while our house was being built - bad sub-contractors, normal stuff with building a house I suppose, but right in the middle of it - I was laid off. I too can say "that was one hell of a stressful year" then a year later a month of events that affected me emotionally - and the lump appeared under my jawline within two weeks! So my situation is similar to yours, i.e., the cancer could have been growing slowly (indolent) and then a traumatic event kicked it in gear.

    My Onc. stressed to me several times "you have to remove the stress in your day-to-day life" It's easy to say "remove the stress" but so hard to do. How one person's immune system handles these stressful events is so different than another person, that it's unknown who amongst us will get NHL and why others don't. Love Janelle
  • CountryGal7557
    CountryGal7557 Member Posts: 164 Member
    #9
    Michele23 said:

    Cancer timeline
    Hi Janelle,I had a lump between my neck and collarbone.Had it checked many times but every dr said don't worry its nothing!!!!One day I made an appointment with a surgeon to get it taken out even she said before and after taking it out don't think its anything.Was always tired but heck back then I worked my butt off morning till night.Then came the itching.Had no computer so had no clue.All I was sure of was the lump just appeared after having this really really bad cold an stayed.May have been more like 2 yrs after looking back at paperwork.How are you feeling these days?I've had more side effects with this treatment then any before this,just one thing after another.Oh by the way yours and Sue's stressful lives sounds like mine.Take care,Michele {dx95 FNHL3}! 1995Biospy neck/local Radiation {stage 1} 1995 car wreck broken collarbone/jaw 1996Biospy under arm/groin+collarbone repair {stage3} Chop96-97 2000 Rituxan Oct.-Sept. 2003 Rituxan Mar.-Oct. 2004RituxanApr.-Oct. 2006 cheek biospy+RituxanMay-Jun 2007surgeryforehead 2008Radiation- -forehead 2008Rituxan Aug-sept. 2009 Rituxan Jan 2009 June surgery neck/parotid gland 2009 Rituxan July 2010 Rituxan Jan 2011Jan Treanda/Rituxan

    Why us and not others....
    Hi Michele, I don't see our stressful lives much different than others, so why us and not others? My Oncologist sees a 2nd variable in his patients with NHL, it's a low immune system. So that may explain why the same sequence of stressful events can be handled by other people, but not those of us with a low immune system. who knows....

    I'm having alot of late-effects lately. every morning I walk like a penguin until the ankle joints limber up and then they ache all day. If I do too much with my hands (clean a bathroom or wash dishes by hand or just carry a tote) the next day my fingers ache like arthritis or something. I still have fatigue or am weak - not sure which it is. I had tried to walk thru the achy joint pain, so I could build up my strength to walk a 5k in May. But one mile a day has just made me more tired and more achy. ha! I don't know what to do!

    I have my next Onc. apt next Friday - the 18th, so will ask him if another clinic specializes in late-affect chemo treatments? I still have chemo-brain too, when I'm more tired it's worse, and I still work full-time....wish I didn't have to, but I Love my job at SwansonVitamins.com as I can work from home if I need too. I'm their web tester.

    Love
    janelle

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