A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 9 of 9

Thread: UPDATE: Relapsed Multiple Myeloma - Insurance denied transplant

  1. #1
    Marcella Egan
    Guest

    UPDATE: Relapsed Multiple Myeloma - Insurance denied transplant

    Hi I am the partner and caregiver of a Multiple Myeloma Fighter.
    She had an Auto Tx in 2013 and has since relapsed.
    She was scheduled to have a tandem Auto Mini Allo in 2 weeks and we just received notice that it is being denied by insurance.
    Anyone else have this problem?
    Help and Suggestions are greatly appreciated!
    --marcella
    Last edited by po18guy; 12-30-2015 at 09:20 AM.

  2. #2
    Top User David52's Avatar
    Join Date
    Jan 2013
    Location
    Central Wyoming
    Posts
    787
    Hi Marcella.

    I am so sorry to hear about your partner's relapse, and about the insurance company's denial of coverage for a mini-allo transplant. I have not had that issue yet, and the only thing I can suggest is that her doctor communicate directly with her insurance case manager, and then go thru the appeal process. Sometimes they give an initial no, and then take it back once they have more info. We shall be praying that is the case here. Best of luck with this, give her a big hug from all of us, and be sure to know we are all praying for a good outcome.

    David
    64 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. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    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. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.

  3. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,918
    This happened to me in June. The difference in my case is that I had just completed a new regimen, and was in full response. The transplant folks and my hematologist were comfortable with that, so we went ahead and did the single haplo transplant. At this point, not knowing if insurance will relent, I would hope that doctor is scouring the shelves for a regimen that will place her either in full response or as close to it as possible. The point being not to hand an adult workload to a baby immune system.
    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

  4. #4
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Location
    New York
    Posts
    5,832
    Marcella, I am sorry for your worries. I came across this information today regarding new approval for a therapy for recurrant MM patients. I am not sure it applies but hope it can be useful. Good luck witheverything.

    http://www.cancerforums.net/threads/...659#post296659

    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.

  5. #5
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,918
    Sorry to hear of the denial and the denial of the appeal. As I understand it (this may vary from doctor to doctor), one may have only a single auto transplant in a lifetime. Thus, an allo is probably the answer, but she must get into remission first. And that is what we are hoping and praying for!
    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

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,918
    I received information that the insurance denial was appealed and the appeal was initially upheld. However, as-yet unknown activity occurred subsequent to this and the tandem autologous/allogeneic transplant has now been approved.

    Great news!
    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

  7. #7
    Newbie New User
    Join Date
    Feb 2016
    Posts
    1
    Hello,

    My father is 71 and was diagnosed with stage 3 MM. He has a fractures bone, and constantly complains of pain. We refused to treat him with Chemo and has given him various herbal treatment such as Burdock Red root, Alternative compound, IP-6, Chinese herbal medicine and most recently Vidatox. He continues to take painkillers daily, morphine being the hardest to get used to. However after giving him the Vidatox, 1 week after he stop take the Chinese herbs, and had a change of painkillers, he reacted negatively to it. He got extremly thirsty, his back itches, he falls in and out of sleep, is disoriented, and is not doing good. We are all worried and confused as we heard that vidatox has no side effects. What could have possibly gone wrong?

  8. #8
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Location
    South Australia
    Posts
    9,473
    Blog Entries
    2
    Quote Originally Posted by Triciabethel View Post
    Hello,

    My father is 71 and was diagnosed with stage 3 MM. He has a fractures bone, and constantly complains of pain. We refused to treat him with Chemo and has given him various herbal treatment such as Burdock Red root, Alternative compound, IP-6, Chinese herbal medicine and most recently Vidatox. He continues to take painkillers daily, morphine being the hardest to get used to. However after giving him the Vidatox, 1 week after he stop take the Chinese herbs, and had a change of painkillers, he reacted negatively to it. He got extremly thirsty, his back itches, he falls in and out of sleep, is disoriented, and is not doing good. We are all worried and confused as we heard that vidatox has no side effects. What could have possibly gone wrong?
    Hi

    I would be making the most of every minute you have with your father. None of the treatments you mentioned have been shown to be any use in treating MM. It sounds like he is in the end stage. I hope I am wrong but regardless treat every minute as special and be with him and let him know that he is loved.

    Good luck and take care
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    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

    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.

  9. #9
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,918
    Quote Originally Posted by Triciabethel View Post
    Hello,

    My father is 71 and was diagnosed with stage 3 MM. He has a fractures bone, and constantly complains of pain. We refused to treat him with Chemo and has given him various herbal treatment such as Burdock Red root, Alternative compound, IP-6, Chinese herbal medicine and most recently Vidatox. He continues to take painkillers daily, morphine being the hardest to get used to. However after giving him the Vidatox, 1 week after he stop take the Chinese herbs, and had a change of painkillers, he reacted negatively to it. He got extremly thirsty, his back itches, he falls in and out of sleep, is disoriented, and is not doing good. We are all worried and confused as we heard that vidatox has no side effects. What could have possibly gone wrong?
    He is probably allergic to one or more of those natural substances. It is clear (my dad also tried it, but died) that natural substances do not and cannot "cure" cancer. A few of them may help to some degree, but that is all. There are many Chinese citizens seeking conventional medical treatment where I received mine, as it is based on science and a proven record.

    You could still connect with a good hematologist to see if anything can be done for your father - I hope and pray that it can. However, it may be toward the end of his life and so time spent with him is most valuable.
    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

 

Similar Threads

  1. Relapsed Multiple Myeloma - Insurance denied transplant
    By Marcella Egan in forum General Cancer topics
    Replies: 4
    Last Post: 12-30-2015, 09:15 AM
  2. multiple myeloma relapsed - treat with Velcade need your advise
    By hilitli in forum Multiple Myeloma Forum
    Replies: 4
    Last Post: 03-13-2015, 06:36 AM
  3. NHL - relapsed within 6-7 weeks of stem cell transplant
    By Vonlenska in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 6
    Last Post: 07-15-2012, 05:30 AM
  4. Replies: 0
    Last Post: 05-30-2012, 04:14 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
  •