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

  1. #11
    Moderator Top User
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    Hi first I would advise don't start a new thread that way everything is in one place which helps people when they reply to your questions.

    Second what you have experienced once you have told family and friends is as it has been for all of us and you never know how folks will react for lots of reasons, so keep in touch with those that are supportive and let the others go on pause and what will be will be. Some real diamonds will appear and others you will not hear from again sadly thats how it is.

    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.

  2. #12
    Administrator Top User Kermica's Avatar
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    Jul 2009
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    6,592
    John is correct, stick with one thread, it makes it much easier to follow your story. As far as the ups and downs and reactions of others, remember that we are all different and there is little or nothing that you can do to change how people respond. I would say that is true for everyone except your spouse. In her case, I think opening a dialogue about her feelings for what you are going through could be helpful. Why is she shut down? Is it fear of the cancer? If so, the story of how things work with this particular beastie may be worth the telling. Is it something else? I guess I am a believer in straightforward communications when there is a problem at home, at least that is what has worked for me. After all, she will be closest to you as you make this journey, her support can be very valuable. Good luck with the PET, it is an easy scan to get through.

    Good health,

    kermica
    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.

  3. #13
    Regular User
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    May 2019
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    35
    FUN AND GAMES IN THE ER! Honestly, I never knew that lymphoma could be so entertaining. Two days ago I started having trouble taking a deep breath and walking upstairs. Nothing severe but very different from my usual. Short version: EKG changes ó> ER ó> ďPanic levelĒ D-Dimer test suggesting possible pulmonary embolism ó> CT scan of chest ó> treadmill test. Fun day! I got be dependent on, and cry in front of, several colleagues. I suddenly felt the full shock of recent events. I felt vulnerable, humbled and frightened. So cry I did, like a wee little baby.

    BUTóGOOD NEWS (letís hope). No PE! My treadmill result was fine! And best of all, my chest CT did not show any enlarged nodes!!!!!

    Also youíll all be proud: I called my future oncologist, introduced myself and asked her to order the PET before our meet-and-greet next Monday. I also got my records to OHSU for my second opinion. So Iím following your collective advice about being assertive and proactive.

    QUESTION: Have any of you had elevated D-Dimer tests ? They measure a blood-clotting by product and are often high in NHL. Mine was 1750, 3 x normal. Have you needed to use anticoagulants?

    Thanks everyone. Iíll be back next week after my Oncology visit.
    Last edited by JiminPdx; 06-27-2019 at 05:29 AM. Reason: Literary standards

  4. #14
    Senior User
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    Mar 2017
    Posts
    220
    Hi Jim,

    Sorry you had to experience that… Yes, being a patient can be humbling - but not humiliating - in the way it brings out your unpolished human nature in the least convenient circumstances. It doesn't matter. What does, is that there was no embolus nor enlarged thoracic lymph nodes.

    Being proactive (without pestering your medical team!) I find, is a good way of retaining dignity and alleviating the anxiety linked to diagnosis. Especially with chronic disease, which entails long-lasting working relations with a whole array of medical professionals - it cannot hurt to have some mutual respect. Congratulations on getting that PET scheduled. Will it be done before Monday though?

    I haven't had any issues with coagulation or fibrin that I know of, so cannot comment on that. I hope it resolves when you are started on treatment.

    Kind regards,

    PBL
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  5. #15
    Experienced User
    Join Date
    Apr 2019
    Posts
    62
    Quote Originally Posted by JiminPdx View Post
    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.
    Welcome, and happy hear your thoughts, even though they are through this unfortunate forum.

    Unfortunately cancer is complicated. After helping my spouse through breast cancer and related surgeries, and then a reoccurrence 12 years later, and now my own issues we have come to experience a broad range of emotions and reactions.

    There are so many unknowns and uncertainties that it is often difficult to know how to react and find the right words, at the right moment. Words meant as encouragement often come off as minimizing the seriousness. Some people feed their own need to want to do something even when you just need some alone, "wound licking" time, as dog owners say.

    Spouses are suffering too. Perhaps the loss of their hopes for the future or uncertainties over support roles they may not feel equipped to fill. Some people don't know how to react because they don't know how you are going to react.

    Some thoughts which have helped us along the way and to accept what is happening: Bad things happen in this world and they don't always just happen to other people. Hold on to hope tightly, but on to expectations loosely. Make the most of today. Thankfulness in the morning is the first step to happiness for the day!

    Cancer is complicated. May your journey be gentle.
    63 years old.
    21 Jan 19 - Victorious Bikram 90 Min Hot Yoga!
    22 Jan 19 - Referred to ER for potential appendicitis, CT w/ contrast was negative for appendicitis but was informed I should see an oncologist ASAP, amused & annoyed
    25 Jan 19 - First visit with oncologist - first words, " I fear we are dealing with a serious form of Lymphoma, some which is not curable", PET Scan and Biopsy ordered, in denial
    14 Feb 19 - "B" symptoms debilitating, on Morphine top off with Extra Strength Tylenol, no longer in denial
    15 Feb 19 - Diagnosed Acute AITL - Stage 3B, 6 cycles CHOP and Auto SCT immediately following recommended, in shock
    01 Mar 19 - First CHOP cycle on way to SCT, resolved to see this thing through!
    19 Jun 19 - Last CHOP cycle
    03 Jul 19 - Scheduled for Transplant
    05 Aug 19 - Transplant deferred, lung surgery to remove growing nodule
    29 Aug 19 - Re-scheduled for Transplant
    23 Sep 19 - Admitted for Auto Transplant
    12 Oct 19 - Discharged from Transplant to home recovery

  6. #16
    Regular User
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    35
    GOOD NEWS TODAY: PET/CT

    I had my pet scan today. It was completely negative! No, they did rush me through a wee bit fast Ė Iím not sure that I actually sat for the full 60 minutes to let the tracer be absorbed. But it was close. And 5% of FL are ďnot avidĒ, i.e., they donít take up the tracer. And finally, in FL, the negative PET does not mean your bone marrow is necessarily clear.

    But geez, I couldnít have hoped for batter news. I still have cancer and I may still be stage four because of bone marrow, and Iím still symptomatic. But what a gift! Keep your fingers crossed, maybe I only have localized disease.

    Your wisdom and suggestions are welcome!!!! It does seem to me that this is a particularly strong case for second and third opinions. And for seeking out clinical trials patiently in the hope of getting something less toxic than chemo therapy.

    Cheers,

    Jim

  7. #17
    Senior User
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    Posts
    449
    Never heard of d dimers in connection with lymphoma. They are the product of blood clots being dissolved. It might be that lymphoma damaged some blood vessels and they made blood clots.
    Are they going to treat you? Are your symptoms lymphoma related? If it's a small disease and asymptomatic you can be on watch and wait for years before you will need any treatment.
    Last edited by fighterm; 06-29-2019 at 04:12 AM.

  8. #18
    Moderator Top User
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    Quote Originally Posted by JiminPdx View Post
    I had my pet scan today. It was completely negative! No, they did rush me through a wee bit fast – I’m not sure that I actually sat for the full 60 minutes to let the tracer be absorbed. But it was close. And 5% of FL are “not avid”, i.e., they don’t take up the tracer. And finally, in FL, the negative PET does not mean your bone marrow is necessarily clear.
    Some years previous around 2015 to 17 a sub type of fnhl was identified and the was talk of it being classed as pre fnhl and may never need treatment, not sure where the research and discussions got to but I do recall it being mentioned by a few who fell in to this category so when all your tests are complete it may be a possibility. Worth looking in to.

    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.

  9. #19
    Senior User
    Join Date
    Mar 2017
    Posts
    220
    PET negative? It does look like good news - puzzling, if you have symptoms. It might be interesting, to assess those symptoms, to try a brief course of anxiolytic and see if that alleviates them in any way.

    Maybe you will not need chemo after all - Ritux might do the trick and give you many good years.

    Keep us posted on what your hematologist proposes to do.

    PBL
    06/2015 - Spontaneous pelvic fracture after 8 years of unexplained left hip pain
    02/2016 - 52 y.o. - Final Dx: Grade 2, Stage 4 Primary Bone Follicular lymphoma
    TTT - 6 R-CHOP21 (03-06/2016) + Maintenance Rituximab (08/2016-04/2018.)
    Currently in remission - Semestrial scans+mris & follow-up appointments with hematologist.

  10. #20
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,592
    Hi Jim, sorry to say I have no experience with the problem you describe. I have used lots of anti-coagulants for a coronary issue complicated by an ulcerated aneurysm. Happily, the docs did the surgical repair last year between relapses so I was able to get off Plavix when I had my transplant.

    Regarding the negative PET, that is good news. It means that the FL has "waned" as part of its normal waxing and waning behavior. This is a good example of why people go on active surveillance for as long as they do with this disease. I 100% endorse your idea of a second opinion at a NCI designated Cancer Center (https://www.cancer.gov/research/nci-role/cancer-centers/find}. Regarding trials and toxicity, most of my research says that the toxic impacts are, generally just different, not removed. Just an FYI on that.

    I know this doesn't really help you. The only practical advice I have is to press your care team for real answers if they are important to you. They don't have to like you but they do need to respond to your legitimate inquiries with real information...or at least that is how I see things.

    Good health,

    kermica
    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.

 

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