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Thread: NHL stage 4 and and the love of my life

  1. #11
    High grade Diffuse Large B-Cell? Or high grade follicular?
    David
    Age 51
    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!
    6/17 CT shows 2 small nodes, neck and groin. 7/17 doing Rituximab monotherapy, x 8 this time. All is good again!

  2. #12
    Super Moderator Top User po18guy's Avatar
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    Good eye, David! Huge difference. I wish that I had some transplant wisdom for her.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone 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. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell 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 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #13
    Moderator Top User
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    Hi
    once you have told us which type of B cell lymphoma it is you will get several experiences shared and some good advice from those who are up to speed with this disease.
    If it is DLBC aggressive then in the UK it is not the norm to go to transplant once in remission and that is the norm in most countries, often r-chop will be followed with radiotheraphy as a mopping up exercise.
    With regard to the neuropathy if the discomfort or pain in the hands and feet the medics will tell you it can take 6 months or more before they will know if the damage is permanent. Chemo brain is something very different and a number of us have suffered with that and in my case is something I have had to learn to live with, which is flustrating at first and hard for those around us, but you do get used to it.
    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.

  4. #14
    Senior User
    Join Date
    Oct 2013
    Posts
    231
    I am going to call the Onc today and ask specifs on this question, becuase I just don't know. I only know B-Cell. I will get back to you and thanks.
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  5. #15
    Zorro:

    I am not an expert in regard to the medical issues on which you are getting so much advice from my colleagues here. So it would be presumptious for me to tell you which treatments if any might be most promising for your husband right now. that is what his oncologists are for. However, like KevinS, I have had an auto SCT (in Nov. of 2012). If your husband's oncologist recommends that course, and if that recommendation is confirmed by a second opinion(if you seek one), then there are several of us around here who have endured and survived auto SCTs. In my own case, I was diagnosed with a rare form of T-cell lymphoma, flunked my CHOP treatments, and was then saved by a new drug specifically designed for my variety of lymphoma. And then I had the transplant. So far, so good. Although it has not been an easy process, I can say right now that I am probably in the better physical condition now than I have been in in many years. As a result of the transplant (I was in the hospital for a month), I lost 30 pounds, all of which I have kept off so far. I also quit smoking and drinking alcohol, and I totally changed my diet. I work out 4 or 5 times a week, and am now able to run 3 miles without stopping. I successfully ran all of a 5k fundraising race a couple weeks ago.

    None of this means that my cancer won't come back.....it might. Or that something else even worse might show up...it might. But what it does mean is that your husband should not feel like having a transplant is the worst thing in the world, if that is what his doctors recommend. If he goes into it with a good attitude, and if he stays as active as he can both before, during, and after his transplant, he really can get back to where he was beforehand fitness wise, or maybe even better. So get the best professional advice you can get, and if at the end of the day you all decide a transplant is the best thing, be not afraid. it is not the end of the world. And if at any point you have questions about that specific procedure, be sure to ask. There are several autoSCT veterans around here who would be glad to lend a hand. Best of luck to you and your hubs.

    David
    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.

  6. #16
    Senior User
    Join Date
    Oct 2013
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    231
    Thank you everyone. He has High Grade NHL, Diffuse Large B-Cell with some Burkitt Like Lymphoma in some cells. He does not have Burkitt Lymphoma but Burkitt like in some cells if this makes sense.

    I don't know waht else to say right now, but I am glad you are out there!
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  7. #17
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,490
    DLBCL is well known and treatments are well settled. As good as doctor is, you may want to consult with an additional B-Cell expert regarding the advisability of a transplant, as the "Burkitt-like" cells may possibly alter the picture (just guessing here).
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone 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. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell 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 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  8. #18
    Anything I might offer now would be anecdotal. As an example, my cousin in Arkansas had DLBCL that was not responding fully to RCHOP. After his 2nd round of RCHOP they pulled him off that regime, transferred to the Arkansas Myeloma Clinic in Little Rock, where they quickly put him on their own chemo cocktail called VTD-PACE. This put him into NED status very quickly, and once they got him there they set him up for an Auto Transplant. Before the transplant they did "SUPER" BEAM chemo to wipe out his bone marrow, and did the entire transplant as an outpatient. He is now over 2 years out and completely cancer free. VTD-PACE is their current therapy for Multiple Myeloma, and they also use it for Lymphoma. All I can tell you is seemed to really work for him. Here is an article:

    http://www.myelomasurvival.com/1/pos...iya-menon.html

    VTD-PACE is bortezomib, thalidomide, dexamethasone and 4-d continuous infusions of cisplatin, doxorubicin, cyclophosphamide, and etoposide.

    Super BEAM chemo is BEAM plus cisplatin, dex, thalidomide, and velcade.

    He has done really, REALLY well. And I think as is the case for anyone with DLBCL, if there is a complete response to therapy the survival curve plateaus (suggesting cure) at around the 4-year mark.
    David
    Age 51
    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!
    6/17 CT shows 2 small nodes, neck and groin. 7/17 doing Rituximab monotherapy, x 8 this time. All is good again!

  9. #19
    Moderator Top User
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    Mar 2010
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    1,350
    Zorro
    As you know we are not doctors so can only share our thoughts and experiences, therefore:
    If I was in your husbands position I would be asking the oncologist why he/she thinks an ASCT is the next step and has he discussed this with a hematologist and I would want to understand what they mean by burkitt like cells, as sometimes it can be hard to type the lymphoma and burketts can look like dlbc. Depending on the answers you may also want to ask for the biopsy to be looked at again before any final decisions are made to check the original typing was correct.
    As you can tell I was one of those patients that needed to know and understand all the info and be involved in treatment decisions, though not everyone is like that and some go with what the doctors say and from what you have shared it may be your husband is not a straight forward DLBC patient. Therefore as I have suggested you need to know why a treatment is being proposed that is not the norm for aggressive dlbc patients who get to ned after r-chop.
    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.

  10. #20
    Administrator Top User ChemoMan's Avatar
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    Ho Zorro ( nifty username BTW)

    You might do well to read this article

    before I link to it you might want to know that the author who goes by the name of ORAC is actually a well known and respected breast cancer surgeon and cancer reasearcher by the name of David Gorski.

    While the article is about Colon cancer it is really about what is known as Adjuvant therapy. In the case outlined in the article the adjuvant therapy that prolongs life and increases chances of survival is chemotherapy. In your case it is the stem cell therapy. Try and read the article and follow the links in it, it should provide some clarity in what is becoming very murky waters. Get your SO to read it as well.

    What ever the choice your SO makes I wish him the best

    http://scienceblogs.com/insolence/20...hat-cured-him/
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

 

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