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Thread: Primary Splenic DLBCL Stage 1 Treatment Question

  1. #11
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    Thanks again Po and Johnr. It is a very complex subject with so many variable.
    Here is an interesting article on the late toxicity of both Chemo (various types) and RT. It interested me as it refers to cardiac risks which sadly, I already have my fair share.
    But also radiation levels and the application method clearly alter the picture in some cases as does other patient issues such as age sex and so on.
    http://www.hematologyandoncology.net/archives/february-2015/long-term-toxicity-of-chemotherapy-and-radiotherapy-in-lymphoma-survivors-optimizing-treatment-for-individual-patients/
    I plan to go back to my haematologist this week hopefully and have a talk to him so I can make a better informed decision.
    All the best to your wife Jotey and to you also as I know it is as hard for you to.

  2. #12
    Super Moderator Top User po18guy's Avatar
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    It seems to me that with existing cardiac issues, Bendamustine-Rituxan might be just as effective and with less cardiac toxicity. However, available research and doctor's willingness would have to drive such a decision. After having a double dose of Adriamycin (Doxorubicin as induction and Doxil as consolidation), I made an appointment with a cardiologist at about the 5-year mark, when late effects might begin showing up. After a battery of testing, my heart was fine, which was quite a relief.

    Just throwing some ideas out.

  3. #13
    Administrator Top User Kermica's Avatar
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    po, I am not certain but don't think that B+R is used for DLBCL, it is much more prevalent for the indolent lymphomas. Of course, I could be wrong.

    As to RT, I do not understand why that option is even under discussion. I have had forty rad treatments over the years, two sessions of twenty each. Both were an attempt to kill my single node follicular lymphoma when it was very early stage, both failed. In DLBCL, I have heard of post chemo rads to a specific area such as the mediastinal if that was the original tumor site, is that what they are talking about - a mopup, as it were?

    If I were dealing with your situation, I believe I would have pushed for the full six treatments of R-CHOP. Regarding the cardiac issues you should either have received a MUGA scan before starting or, at a minimum, your cardiologist should have been part of the consultive team. My cardiologist approved me for R-CHOP but my oncologist overruled that decision so I received a subset known as R-CVP. Good luck with everything and keep us posted.

    Good health,

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

    Age 66
    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 iliax 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.

  4. #14
    Hi again, I agree with Kermica, I don't believe B & R is an option, so rchop, mini rchop to reduce toxicity or rchop with other drugs are being trialled and these would be the options that can be put on the table for discussion. I did have some heart issues post chemo, I had 8 rounds, but they cleared uo over a 2 to 3 year period and 8 years on, heart wise everything is still fine. When you have the discussion, if you did not have a muga ask why, because its standard protocol to scan before and after treatment so they can measure if any damage has occurred.
    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.

  5. #15
    Super Moderator Top User po18guy's Avatar
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    I would have to pull up the trial results from the TREC trial (Treanda, Rituxan, Etoposide, Carboplatin), as it was intended to reduce the toxicity, specifically of ICE. However, I believe they tried it in all B-Cell Lymphomas, to include Hodgkin's. As well, there is the possibility of BGV (Treanda, Gemcitabine, Navelbine). Only throwing ideas out, when the conventional wisdom is not working as planned.

    TREC (minus Rituxan) very quickly eradicated two aggressive T-Cell Lymphoma sub-types in my case. I will grant you that they were T-Cell, but those are normally much more difficult to place in full response than B-Cell varieities.

    Again, these are only brainstorms.

  6. #16
    Hi again, re your worries about long term side effects, not so sure things have changed that much since I went through treatment in 2009 and remember to date you have had 3 rounds which is not to bad when compared to the possible 6 you could have had. Around 2010 they started to reduce the number of cycles for the reasons you raise and for a while 4 or 6 rounds started to replace 6 or 8 and that seemed to last a year or 2 at the most and things seem to have drifted back to 6 as the norm with mixed thoughts about mid point scans and the benefit versus the risk and additional exposure to radiation. Have not come across any papers that explain the outcome of the trial and why the drift back to 6 rounds. Something you may want to explore depending on how your discussion goes with the consultant. What I do know though is you can never tell who will sail trough treatment and come out the other end with little long term damage, or who will pay a price and have some issues.
    Just sharing this to help you understand whilst some reviews are out there, not so sure they tell us anything new, though for those new to dealing with the disease like yourself it can sway your thinking in certain situations.

    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.

 

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