A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Help:Follicular lymphoma level 3A, stage IVB, 8 rchop, what is the next treatment

  1. #1
    Newbie New User
    Join Date
    Sep 2019
    Posts
    5

    Help:Follicular lymphoma level 3A, stage IVB, 8 rchop, what is the next treatment

    1. I am from China, 37 years old, male, with a lovely son and a beautiful wife
    2. Follicular lymphoma (FL) diagnosed in November 2018:
    1) grade 3A, stage IVB, systemic involvement (liver, spleen and bone marrow)
    2) tumor Ki67 (20%-40%), maximum SUV value 7.53, maximum size 109*78MM
    3) maximum SUV in aorta is 1.78,maximum SUV in liver is 3.43, and maximum SUV in spleen is 2.95
    3. Up to now, 8 r-chops have been performed, and pet-ct was performed one month later, with tumor residue:
    1) maximum SUV value of tumor is 2.28, and the maximum size is 35*27MM
    2) maximum SUV in aorta is 2.01, and the maximum SUV in liver is 3.25, deauville 3 points
    4. How should I choose next?
    1) suspend treatment and start observation?
    2) start using Rituximab every 3 months for 2 years?
    3) continue treatment with R2(Rituximab+lenalidomide)?
    4) other Suggestions?
    Thank you very much!
    Last edited by zeng; 09-11-2019 at 03:21 AM.

  2. #2
    Regular User
    Join Date
    May 2019
    Posts
    34
    Hi Zeng

    I am sorry that you have developed NHL. I’m new here and I will defer any advice to the more experienced people. I just wanted to let you know that there is support out here for you. And that you are not alone!

    Well, one piece of advice. If you do not have access to world class experts on non-Hodgkin’s in China (and surely, there must be), and you have the resources to travel, you might consider going to the Fred Hutchinson Cancer Center in Seattle, or one of the other three “mega centers“ in the United States. I just went to Seattle for a second opinion and it was invaluable. I had to pay around $250 for them to read my slides, and another few hundred dollars to see the doctor. The cancer center provided affordable and comfortable housing nearby. The residential center had a very large map showing the countries of origin of visiting patients. There were quite a few from China.

    Best wishes
    Last edited by JiminPdx; 09-11-2019 at 10:39 PM. Reason: Typos

  3. #3
    Senior User
    Join Date
    Mar 2017
    Posts
    216
    Hi Zeng,

    Welcome to the forum, though I am sure you would prefer never to have become a member!

    First of all, congratulations on achieving remission. The 5-point Deauville scale is a tool that enables nuclear medicine doctors to determine whether you are in remission based on the glucose avidity of your tumor (meaning, its aggressiveness), and as long as it is not higher than your liver's, then you are rated Deauville 3, i.e., in remission. So, you can be reassured - your treatment so far has been successful.

    Regarding your question on what to do next, I assume your doctors have discussed it with you. What is pretty much standard for advanced Follicular Lymphoma after chemotherapy is to pursue treatment with immunotherapy. Rituximab every two or three months for two years has been shown (see PRIMA study) to significantly increase the duration of remission (i.e.Progression-Free Survival). So, it may be worthwhile for you to accept follow-up immunotherapy if that is what your doctor has suggested in your case.

    Just so you have a clear idea of what this is all about: I also have grade 2, stage IV Follicular Lymphoma, was treated with 6 R-CHOP21 in 2016, and then had immunotherapy with Rituximab every eight weeks for two years. My hematologist has told me that, as per the results of the PRIMA study, I now had a 50% chance of still being in remission in 2026 (i.e., ten years after diagnosis). This is not guaranteed, of course, but it sounds pretty good!

    I hope this helps.

    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.

  4. #4
    Newbie New User
    Join Date
    Sep 2019
    Posts
    5
    HI JiminPdx

    Thank you very much for your advice. If I cannot find a very professional experts in China, I will seriously consider your suggestion and seek help in the United States

  5. #5
    Newbie New User
    Join Date
    Sep 2019
    Posts
    5
    Quote Originally Posted by JiminPdx View Post
    Hi Zeng

    I am sorry that you have developed NHL. I’m new here and I will defer any advice to the more experienced people. I just wanted to let you know that there is support out here for you. And that you are not alone!

    Well, one piece of advice. If you do not have access to world class experts on non-Hodgkin’s in China (and surely, there must be), and you have the resources to travel, you might consider going to the Fred Hutchinson Cancer Center in Seattle, or one of the other three “mega centers“ in the United States. I just went to Seattle for a second opinion and it was invaluable. I had to pay around $250 for them to read my slides, and another few hundred dollars to see the doctor. The cancer center provided affordable and comfortable housing nearby. The residential center had a very large map showing the countries of origin of visiting patients. There were quite a few from China.

    Best wishes
    HI JiminPdx

    Thank you very much for your advice. If I cannot find a very professional experts in China, I will seriously consider your suggestion and seek help in the United States

  6. #6
    Newbie New User
    Join Date
    Sep 2019
    Posts
    5
    Quote Originally Posted by PBL View Post
    Hi Zeng,

    Welcome to the forum, though I am sure you would prefer never to have become a member!

    First of all, congratulations on achieving remission. The 5-point Deauville scale is a tool that enables nuclear medicine doctors to determine whether you are in remission based on the glucose avidity of your tumor (meaning, its aggressiveness), and as long as it is not higher than your liver's, then you are rated Deauville 3, i.e., in remission. So, you can be reassured - your treatment so far has been successful.

    Regarding your question on what to do next, I assume your doctors have discussed it with you. What is pretty much standard for advanced Follicular Lymphoma after chemotherapy is to pursue treatment with immunotherapy. Rituximab every two or three months for two years has been shown (see PRIMA study) to significantly increase the duration of remission (i.e.Progression-Free Survival). So, it may be worthwhile for you to accept follow-up immunotherapy if that is what your doctor has suggested in your case.

    Just so you have a clear idea of what this is all about: I also have grade 2, stage IV Follicular Lymphoma, was treated with 6 R-CHOP21 in 2016, and then had immunotherapy with Rituximab every eight weeks for two years. My hematologist has told me that, as per the results of the PRIMA study, I now had a 50% chance of still being in remission in 2026 (i.e., ten years after diagnosis). This is not guaranteed, of course, but it sounds pretty good!

    I hope this helps.

    PBL
    HI,PBL

    Yes, there is an international consensus that rituximab should be used for two years, which is the most basic regimen I chose.

    Considering that I am still young and able to withstand it, is it necessary to use rituximab + lenalidomide (R2) to pursue a longer remission time and even a cure?

    Now the experts I consulted have different opinions. Some experts think that treatment should be more aggressive, while my doctor thinks that the addition of lenalidomide may extend the remission time by 3-6 months, with no greater benefit, and maybe there will be better new drugs in a few years.

    What do you think?

    Thanks again for your help!

  7. #7
    Senior User
    Join Date
    Mar 2017
    Posts
    216
    Zeng, I am afraid I cannot give you any medical advice, as I am not a medical doctor - only a patient like yourself.

    What I can share with you is what has been offered and done in my case, and what I have learnt from my own doctors and readings.

    In my case - and I understand this to be the standard of care for someone who has achieved remission after completion of chemotherapy - only the two-year Rituximab maintenance was deemed necessary.

    The general consensus seems to be that you should use your bullets sparingly, as Follicular Lymphoma does tend to recur, and therefore no treatment is guaranteed to rid you of all the abnormal cells at once. What exposing those cells to a given treatment can do though, is to perform a Darwinian selection, and you might end up with multiresistant lymphoma that becomes much harder to treat - pretty much what happens with bacteria and antibiotics. I believe this may be in part what your doctor had in mind in telling you that lenalidomide would only be of marginal benefit.

    As it is, at 37 and after 8 R-CHOP, assuming you pick Rituximab maintenance, you could have well over ten years of remission. Lymphoma research being very active, if and when your disease becomes active again, better and more effective treatments may be available to deal with that.

    In the end, however, this is about your life, and the decision is yours. As there is no 100% certainty either way, you should pick what makes the most sense to you.

    I hope this helps. Best of luck to you in deciding on the next course of action. Do keep us posted.

    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.

  8. #8
    Newbie New User
    Join Date
    Sep 2019
    Posts
    5
    HI,PBL

    Sorry for the late reply.
    We are celebrating the Mid-Autumn festival these days in China, and I have been accompanying my family.

    Thank you for your kind reply. Your information is very helpful to me.
    My doctor also said that lymphoma drugs are developing fast, and there will be better drugs in future.

    I decided to take rituximab for maintenance, with good nutrition and sleep, for a 10 years remission.
    Also wish you an excellent remission, we all fight together

    keep in touch,Thank you!

  9. #9
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,404
    Follicular is generally considered to be curable only by a stem cell transplant. There is no agreement on treatment, as some think that early treatment can provoke the follicular to transform into Diffuse Large B Cell Lymphoma. However, you also risk this happening as long as any of the follicular lymphoma remains.

    Time is on your side as new biological drugs are appearing at a steady rate. Several drugs which I have received were not available when I was first diagnosed. I think your plan is a good one.
    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.

    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.

  10. #10
    Regular User
    Join Date
    Jun 2019
    Posts
    11
    if stem cell transplant is considered curable why is that not the first option?

 

Similar Threads

  1. HELP: Newly Diagnosed... METASTATIC PANCREATIC CANCER (STAGE IVB)
    By VIRGO in forum Pancreatic Cancer Forum
    Replies: 36
    Last Post: 07-31-2014, 04:58 AM
  2. Mom is stage IVb, widespread mets, started chemo yesterday...but multiple organ mets
    By Nikki23 in forum Stomach and Esophageal Cancer Forum
    Replies: 2
    Last Post: 08-14-2013, 02:10 AM
  3. My Mother was Diagnosed with stage IVB Colon Cancer... Please help.
    By jijji1313 in forum Colon Cancer and Rectal Cancer Forum
    Replies: 17
    Last Post: 02-24-2012, 09:23 PM
  4. Stage IVB survival & treatment?
    By peterz54 in forum Colon Cancer and Rectal Cancer Forum
    Replies: 17
    Last Post: 12-30-2011, 11:43 AM
  5. My best friend is doing well 8 months since PC stage IVB diagnosis
    By Trying2Bthere in forum Pancreatic Cancer Forum
    Replies: 1
    Last Post: 10-12-2011, 11:24 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •