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Thread: Follicular Lymphoma for a while now

  1. #1701
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by davidgb View Post
    Hey man, sorry again for my slow post here. I am glad to hear you are seeing fast results - that has to be encouraging and I suspect that may predict a strong response. We are all pulling for you!

    I see my (new) doctor tomorrow at Fred Hutch for my annual visit. I have been reassigned to Ajay Gopal since Oliver Press is out indefinitely for medical leave due to a recurring brain tumor. I have no details on his condition unfortunately. I do look forward to meeting with Dr. Gopal though - have always admired him and he was one of the top people on my original list 6 years ago. No scan for me though - blood work and office visit only. There are a few nodes we have been watching for the last several years (no changes since I first noticed them), but I want to get his input on it. You know how much I hate "observation/watch and wait." I may even be up for 4 rounds of Rituxan for the peace of mind. Otherwise, I am pretty much business as usual right now - moving into year 5 now.

    Hang in there brother!

    David
    We all have high hopes for K!

    Great to hear from you! Sad to hear about Dr. Press. As to Dr. Gopal, he conducted a trial of TREC (Bendamustine, Rituxan, Etoposide, Carboplatin) at SCCA which was my 5th salvage regimen that put me in full response.

    Hey, I'm there tomorrow for transplant follow up. What time? And, where's Mike???
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  2. #1702
    Administrator Top User Kermica's Avatar
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    Thanks David and POGuy. Good luck to both for your appointments with Dr. Gopal.

    I am now nine days post infusion and it really hasn't been difficult for this first round. Defens, you are right about doing what is needed to avoid constipation, thanks for that tip. I have had some minor stomach upset which the anti-nausea pills address very nicely. I did get an initial response which was significant enough that my hearing has been restored, which is obviously a good thing. That said, progress has stopped as far as I can tell. All of the tumors are still in place and seem to be size stable. I assume that is why we do multiple rounds of therapy and I will be looking for more after my next infusion on 2/27. I also expect that is when I will see hair loss (which I really couldn't care less about). To me, it is a temporary condition brought about in a good cause.

    All in all, I think things are going reasonably well. Now, we just need to kill the beast and all will be right with the world.

    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.

  3. #1703
    Senior User
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    Monroe, WA, USA
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    Quote Originally Posted by davidgb View Post
    ...
    I see my (new) doctor tomorrow at Fred Hutch for my annual visit. I have been reassigned to Ajay Gopal since Oliver Press is out indefinitely for medical leave due to a recurring brain tumor. I have no details on his condition unfortunately. I do look forward to meeting with Dr. Gopal though - have always admired him and he was one of the top people on my original list 6 years ago.

    David
    As you probably recall, David, Dr. Gopal is one of the lead researchers on my clinical trial, which so far has shown great results. Although I only actually met with him a couple of times (my treatment was done across the lake at the SCCA center in Kirkland) I found him to be extremely knowledgeable, direct, and charming. You'll be in great hands, and I'm sure you two will forge a great relationship.

    Kermica - glad you saw some immediate relief! Hang in there - I'm fairly certain you'll see continued tumor reduction, even if it "pauses" now and then. I saw nearly instant reduction in most nodes, but some did seem to hang for a few cycles.

    Even a year after my induction and consolidation, they were still noting reduction in tumor size, on nodes that I assumed were as small as they were going to get. Necrotic tissue seems to take a while to reassimilate into the body. Your blood chemistry should give them some idea of how much dead tumor material is circulating.
    DX - 5/2010 Grade 1, Stage 4 fNHL - w/spleen and 47% bone marrow involvement
    TX - 6/2010-12/2010: SWOG S0801- R-CHOP + Bexxar + Rituxan (4 yrs/quarterly)
    Restaged (post Bexxar) - PCR-Neg/NED :2/2011
    Rituxan maintenance ended 3/2015
    12/2016: Remission continues (>5 years) Down to one checkup/year!

  4. #1704
    Hey, sorry I missed your reply! I was there all afternoon, hanging out on the 4th floor waiting on my appointment at 3:30. I didn't get in till almost 4:00, and Dr. Gopal hung out with me until 4:45! I may have actually seen you (or you me) in the waiting room and didn't know it! I need to get you my cell so we can coordinate next time!

    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! 2/15 NED! 2/16 NED!

  5. #1705
    He was great Mike, seriously. We are the exact same age, and both have 9 year old boys. I think Gopal was my favorite doctor by far. I had no scan yesterday - just labs and an office exam. He felt around on my few palpable nodes (that have been the same since moving to the PNW as far as I know) and hardly even reacted. He told me very directly that I need to "stop thinking of this in terms of 5-year intervals as I have done, and look at the 40-year gameplan." He said his entire mission with me was to 'hand me off to the next doctor once he retires in 25 years.' I had told him about my interest in retreatment with Rituximab, sort of mirroring the RESORT study, but he was lukewarm about that - I could tell not a major fan. Not that he didn't agree that I would likely have an identical response. And he also said if were were to start doing biopsies or extensive bone marrow tests we would likely find some follicular lymphoma cells at some point. He just thought that knowing how well I responded initially, we can hold off, and he wouldn't even venture a guess as to how long. He said that I will "likely need some form of hopefully mild treatment at some point someday," but dousing my b-cells unnecessarily right now with no apparent change to my situation, barring some new data that might prove a benefit (like a possible reduced risk of transformation), is not what we need to do on this 40-year gameplan. He said we could do it now, or we could do it 5 years from now and get the same result, and if we did it both times we may have gotten twice as much drug as we needed. It was an interesting conversation because I could really tell this is a doctor that is on the side of the patient, and not the drug companies. He told me too that if patients get too much Rituximab, they will at some point down the line become refractory to it - not that I have had much at all (8 doses total). I did question him on this, based on what Brad Kahl told me and how his RESORT patients, many of which are over 10 years out now and have had continual Rituximab every 3 months with no sign of resistance. He then repeated what that much Rituxan means to your immune system.

    We talked a bit about the SWOG study you did too Michael. He did tell me that some of those patients are likely cured of their lymphoma now, and we talked quite a bit about how both arms of that study (with or without Bexxar consolidation) have done. Both have done quite well apparently.

    He said CART is very promising of course, but still quite dangerous. They are working hard on it. He also said that what I should think about in the future is any novel clinical trial that might start that has a focus on longterm management of the disease with little to no toxicity and/or side effects.

    I think the most encouraging thing I heard from him was this: He said that there is something we can learn from my Rituxan experience 5 years ago. Based on the response I got from it, he said there is no reason to think I should not do as well as "standard controls" for the average 49-year-old male in regards to life expectancy. Had I been refractory to Rituxan, or shown signs of progression within a year, he said he would not be able to say that. So, we can just hope for the best I suppose. No scans again unless I need them based on symptoms, and I see him again in 1 year. He also said that if I get to a point where I am just too uncomfortable with the idea of all this, we could talk about some more rituxan. He said he would not tell me no if I felt I really needed it for my mental health. He totally understands the psychological toll this can take on us.

    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! 2/15 NED! 2/16 NED!

  6. #1706
    Quote Originally Posted by Kermica View Post
    Thanks David and POGuy. Good luck to both for your appointments with Dr. Gopal.

    I am now nine days post infusion and it really hasn't been difficult for this first round. Defens, you are right about doing what is needed to avoid constipation, thanks for that tip. I have had some minor stomach upset which the anti-nausea pills address very nicely. I did get an initial response which was significant enough that my hearing has been restored, which is obviously a good thing. That said, progress has stopped as far as I can tell. All of the tumors are still in place and seem to be size stable. I assume that is why we do multiple rounds of therapy and I will be looking for more after my next infusion on 2/27. I also expect that is when I will see hair loss (which I really couldn't care less about). To me, it is a temporary condition brought about in a good cause.

    All in all, I think things are going reasonably well. Now, we just need to kill the beast and all will be right with the world.

    Good health,

    kermica
    I have heard many times of similar responses Kermica. You notice something right away, and then settle in for the cumulative effect of multiple rounds. Glad to hear you are coping well with all of this. You are a pretty tough dude. Oh, and the house looks fantastic!

    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! 2/15 NED! 2/16 NED!

  7. #1707
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
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    Pacific NW, USA
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    Quote Originally Posted by davidgb View Post
    Hey, sorry I missed your reply! I was there all afternoon, hanging out on the 4th floor waiting on my appointment at 3:30. I didn't get in till almost 4:00, and Dr. Gopal hung out with me until 4:45! I may have actually seen you (or you me) in the waiting room and didn't know it! I need to get you my cell so we can coordinate next time!

    David
    No worries! You did not need to see me yesterday. I was on the first, second, fifth and sixth floors. You might have heard my coughing and hacking. I must have left an entire lung there and today received the diagnosis of both RSV as well as pneumonia.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  8. #1708
    Senior User
    Join Date
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    140
    Quote Originally Posted by po18guy View Post
    No worries! You did not need to see me yesterday. I was on the first, second, fifth and sixth floors. You might have heard my coughing and hacking. I must have left an entire lung there and today received the diagnosis of both RSV as well as pneumonia.
    RSV and pneumonia! So very sorry to hear you have to deal with those nasties! Sending lots of good healing thoughts your way for rapid recovery!

    VMarie
    Researcher, advocate, and caregiver to my son, age 24
    Diagnosed with Systemic ALCL ALK-neg, DUSP-neg, stage IV, IPI 2, PIT 1, normal LDH, normal B2 microglobulin, July, 2016
    Studies show young age (<40) is the great equalizer between ALK-negative and ALK-positive, with ALK neg at similar outcomes as positive when adjusting for age
    Third round of E-CHOP completed Sept 2016; PET scan NED Sept 2016!
    Sixth and final round of E-CHOP completed Nov 2016
    Primary side effects: Some mucositis and constipation, but this resolved early on. Fatigue. Thrush after chemo resolved with Nystatin. Depression (also an issue before cancer diagnosis).
    Continued to live alone and work two jobs through chemo!
    PET scan NED, Dec 2016!
    Second opinion at Seattle Cancer Care Alliance and Dr. Shustov: Active Observation, no auto stem cell at this time

  9. #1709
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
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    Quote Originally Posted by VMarie View Post
    RSV and pneumonia! So very sorry to hear you have to deal with those nasties! Sending lots of good healing thoughts your way for rapid recovery!

    VMarie
    Since good things come in threes, I received a call yesterday that I also have Rhinovirus - the triple crown of respiratory infections! So my day is spent measuring blood sugar, injecting insulin and scheduling the five anti-viral, anti-fungal and antibiotic drugs, along with various other prescribed and OTC medications. WooHoo!
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  10. #1710
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
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    5,864
    POGuy, I hope you get past all this stuff with flying colors and in short order. I just came back from my Day 14 toxicity check and am now on "house arrest" because my white blood count and neutrophil count are both very low. They put me on a precautionary antibiotic for the next seven days. Side effects are neuropathy, fatigue and constipation. Fun, fun...next date is next Monday for infusion #2. I wonder what they will do if the counts are not up by then.

    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.

 

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