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Thread: New Dx of FNHL, 6/10/19

  1. #1
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    New Dx of FNHL, 6/10/19

    So I have officially been diagnosed with Follicular Lymphoma, Grade ď1-2Ē with a high MIB-1 (Ki-67) of 30%. Chromosome study failed. FISH and other studies pending. Strongly CD-20 positive so good Rituxan candidate. But we havenít staged it yet. So no decisions until I get my pet scan, bone marrow biopsy, etc.

    Iím being treated Kaiser Permanente, which has a very good oncology department. I may go to our local national cancer center @ OHSU But most of our oncologists trained there, so their opinions may be fairly uniform. I can also go to the Fred Hutchinson cancer center in Seattle to get input from a different perspective, or possibly go to MD Anderson.

    I have lots of questions but Iíll refrain from asking them all now. I alternate among worry, intense research, and relative tranquility. I feel sad for my family because this is so distressing to them, even though my husband feels relieved to have the diagnosis finalized and the news is pretty good, considering. But sometimes I feel angry, even at strangers or in animate objects like a creaky gate. Iíve been irritable at work and I feel bad about that.

    Did other people go through a period of anger and general emotional confusion at the beginning of their diagnosis?

    Thanks everyone.
    Last edited by JiminPdx; 07-06-2019 at 01:03 PM. Reason: Typos

  2. #2
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    Hi, sorry to see you have moved from the worried forum to actually having a diagnosis, some of what you are experiencing is normal and the advice I would offer at this stage is try to think of this as a chronic disease which is only treated when it flares up and whilst hard to understand not treating fnhl until needed is good and the longer you go the better. Next try not to waste energy and create angst on the what if's or but's as you can change what has gone, but you can to a degree control what happens from here on in, so that has to be the way forward in my view.

    You might want to edit the title to include fnhl so that others who have it will see your post and respond.

    this is treatable and the are a range of options when treatment is need. Ask your questions and people where share their experiences and knowledge and if needs be go back to that book and read it when you need some karma.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #3
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    Hi John.

    Thanks for your response. It’s so helpful to have a place to talk openly. I haven’t told family yet except spouse; frail elderly parents etc. I’m not sure to handle most of my friends – I’m not sure how to handle myself yet. So your support is invaluable at this point.

    In the near future I’ll be at peace with all of this. Especially once I have a more definitive idea of the stage and the treatment plan. Right now I’m struggling a bit. I only got three hours sleep and I can’t face driving in terrible traffic to go to work today (My team knows what’s up).

    I have no idea what the oncologist will recommend – I am symptomatic and I think it will depend on the stage.
    But I’ll deal with questions around treatment when the time comes.

    By the way John, how do you change the title of thread?
    Male, 58
    Dx 6/10/19: low grade follicular lymphoma with MiB-1 =30.
    LDH 178 (normal). Stage TBD.

  4. #4
    Administrator Top User Kermica's Avatar
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    Hi there, JiminPDx and welcome to the place no one wants to be but any come to value. I am sorry to hear of your diagnosis but be assured that fNHL is one of the blood cancers that can be treated successfully, though there is no cure yet available which is acknowledged throughout the community. There are a number of therapies that have the appearance of providing very long remissions but the time has not elapsed which would allow one to have certitude around any claims to a cure.

    As to a second opinion, I think they are always a good idea after the rest of your pathology report comes in. Do use a center such as Andersen or Hutchinson (or OHSU for that matter). I had one done at Memorial Sloane Kettering almost eleven years ago and it changed my life and the path I would follow with this disease. My local docs had me at Stage 4 and MSKCC restaged me to Stage 1. The treatment plan changed from doing watch and wait on the S4 until it impacted organs and required treatment to a curative effort with focused beam radiation. The effort failed but I was still happy to try to kill the beast in its early days.

    Anyway, you will learn that fNHL is a journey. It is (mostly) something you can live with on a daily basis and, even when treatment is needed, if you are in reasonably good shape, you will find that you tolerate things without too many side effects or issues. No promises there but it is true for most of us. Good luck to you and don't hesitate to come here to vent, to ask questions ot to just to update us on your progress. Good luck to you .

    Good health,

    kermica
    Last edited by Kermica; 06-12-2019 at 02:40 PM.
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    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 Rituxan, 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.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  5. #5
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    Hi, I have edited the title for you so that should help, telling everyone is challenging as you have to explain and especially so with an indolent type where you might be on watch and wait as people don't understand and that's where it can become exhausting as you have to go into the detail. Some people find doing a blog or using a closed facebook group a good way to communicate as you put up the posts as and when you feel like it and it saves you telling everyone, or you can use a cascading method which means close family and friends pass on the news for you, sometimes it works and sometimes not. The other thing to be aware of is how people react, some won't know what to say, others will be supportive but then go missing in action as everyone reacts differently, then some people will be there for you who you never expected, it does give life a different perspective and not always in a negative way. Whilst that may sound odd now, you will understand as time progresses.

    Don't beat yourself up so when you have a bad day its ok, just try not to let it be the norm and to counter the gloom look for the "silver linings" or on the bright side however you say it I the states, I am from the UK, as a positive outlook does help and thee book you found - The Joy of Life ? should help you too from what you briefly said in the other thread.

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  6. #6
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    Hi,

    Sorry you did end up getting full membership to this clubÖ I too have fNHL, diagnosed in 2015-2016 (long story).

    As you seem to be symptomatic, I would say "brace yourself for chemo". This, depending on staging as well as your medical team's beliefs - and possibly other factors I am not in a position to discuss - may be R-CHOP or R-Benda. The side effects are so different that, as you have figured out for yourself, there is no point in discussing them at this point.

    If you do update when all the results are in and decisions are made regarding the course of action, then those who have undergone the same treatment will chime in to advise you on how to deal with it.

    As mentioned above, fNHL is currently still considered incurable, but treatable. In my experience, most people - unless they have personally had to deal with more than the flu or a broken leg - have no idea what having a chronic disease (let alone a chronic cancer) means. After chemo, when I resumed work, I let my colleagues know that this is something I will never be rid of, that may flare up at any time, but that, for now, has been treated and is currently dormant.

    As you have already been able to see for yourself, feeling angry or scared is of no benefit to anyone (I know, easier said than done...), so you may want to evacuate that as quickly as you can. Depending on the symptoms resulting from your emotions, you may want to consider seeking help from your PCP (anxiolytics, antidepressantsÖ), counseling, yoga/meditation, the gym, going to the movies or for long walks, taking up watercolorsÖ As Woody Allen would say - "Whatever Works". I know that, personally, since I had been complaining of the same symptoms for so long, what I mainly felt when the cat got out of the bag was... relief. Not to say that there was absolutely no anger or sideration at any point - after all, cancer is a form of betrayal - but what dominated was relief.

    Just be assured that whatever lies ahead in terms of treatment or mood, you have found a great place to learn from or to vent - whichever you prefer.

    Kind regards,

    PBL

  7. #7
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    Thanks for the kind words. You’re correct that being angry is corrosive. And. Lastly I feel grateful (that I don’t have a metastatic solid tumor, for example) or motivated. I’ve spoken with the Hematopathogist directly, and with a friend who works at Fred Hutchinson in Seattle, and read a dozen articles etc. Contacted lymphoma society about clinical trials and a peer support buddy. Etc. But the anger, sadness and fear come in waves and I just try to observe them and relax.

    One bit of good news: the pathologist reviewed the slide, and lowered my MIB (mitotic index, or roughly cell division rate) from 30 to close to 20. He explained that MIB is usually a ball park figure; he had not been the one to give the original rating of 30.

    Also I find it easier to just focus on helping others at work.

    I’ll stop the emotional stuff in a few days but in the meantime thank you for listening!
    Last edited by JiminPdx; 06-13-2019 at 05:55 AM. Reason: Added PS
    Male, 58
    Dx 6/10/19: low grade follicular lymphoma with MiB-1 =30.
    LDH 178 (normal). Stage TBD.

  8. #8
    Experienced User
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    My fhnl diagnosis change my life for the better. I was stage 4 but not symptomatic in 2013, ended up having chemo in 2017 due to also being diagnosed with aggressive HL so they treated both.

    I went through the stages as you did, but it made me determined to make sure if the worst happened I left behind happy memories with everyone I loved. whereas before I was super work focused and rarely relaxed and took time to enjoy life. I found talking about it with people really helped both for me and them.

    Simon
    Age = 44
    Stage 3 follicular NHL & Hodgkins
    Diagnosed Sept 2013
    Escalated BEACOPP + Rituximab completed 2017

  9. #9
    Senior User
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    My first lump in the lymph node was discovered 40 years ago, it went in remission spontaneously, then I got dlbcl in the same lymph node 14 years later, treated with chop, then I got Follicular 15 years later, treated with rads, then it recurred a couple of times. I had r-benda and I am treating it again now with rceop. Every time when it's Follicular my biopsy shows partial transformation. But only once it was full transformation. My onc was not very enthusiastic about the success because after many lines of therapy I could've developed drug resistance, but my midway CT showed substantial reduction of all tumors. The biggest one 15 cm was reduced to 6 cm. So the drugs are still working. Now I have a new hope. They are talking about car T cells in my city. It can be curative. I lived most of my life with lymphoma, my life was normal and pretty good. All my friends know about my lymphoma. I also had bladder cancer due to poor hydration during chemo. You need to drink a lot to flush you bladder from chemicals.

  10. #10
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    I spoke with my future oncologist today. She ordered a pet scan which hopefully will be done next week so that we can have the results for our first visit.

    Iíve told a few friends and had the expected range of responses ó from ďwe all have to die sometimeĒ to daily phone calls to see how Iím doing and talk about other matters. I was surprised that a friend/colleague who has survived a different cancer texted but has not been in contact. And my spouse is shut down.

    So between trying to sort out what strategy I want to pursue, and feeling bewildered by peoples reactions, Iím overwhelmed. Iím still about 60 percent functional at work.

    I remind myself that people who are distancing themselves are also trying to protect them selves from sadness, especially my spouse and my colleague who is a cancer survivor. And I find your postings super helpful. I noticed that a couple of you also post on the CSN, and I found a string there that was really useful. And wow, some of you are terrific writers!

    I donít know how to use this site very well. In a couple of weeks Iíll switch from moaning about my adjustment to asking questions about treatment strategies and peopleís experience with RB, R-chop, etc. Should I start a new thread?

    Hope youíre all having a beautiful first day of summer. Enjoy the long days!

 

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