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Thread: How to monitor spread of PTCL - NOS?

  1. #1
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    How to monitor spread of PTCL - NOS?

    Hi all, my mum has Peripheral T-cell lymphoma, not otherwise specified.

    When we visited the doctors today, they said they will monitor for symptoms and then arrange for PET/CT scan to monitor the spread of tumors within her body. This seems to be reactive approach to doing things. I tried asking whether we can do a PET/CT scan every 1.5 months to which the doctor said it wasn't necessary and that we should leave it to them to monitor my mum for symptions and then arrange for the scans.

    Is this how you all manage your situation? Just paranoid that stuff happens on the inside of my mum's body that may not show symptoms until it is too late (afterall, isn't that how people get diagnosed with Stage 4 cancer too late? surely the symptoms weren't severe enough to notice right?)

    Thanks

  2. #2
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    Hi,

    Sorry you are so concerned about the follow-up and monitoring of your mum's disease. A couple of points here in response to your post:

    1. In deciding on the frequency and/or regularity of PET-CTs, your mum's doctors must juggle several factors, among which possible detrimental effects.
    Yes, it is possible to have too much of a seemingly (i.e., in this instance, reassuring) good thing, as PET-CTs expose your mum to a certain amount of radiation, which - as I am sure you are well aware, can contribute to causing cancer.

    2. In someone who is yet undiagnosed, depending on their symptoms, it can sometimes take a while to connect the dots and reach a diagnosis. This, combined with the particular behaviour of the disease, can explain how someone can be diagnosed at a late stage. Your mum, on the other hand, now does have a diagnosis of cancer, and her doctors are not likely to forget it. They will monitor her in the least invasive/ noxious manner, and will not hesitate to carry out any tests they deem necessary - including imaging - should anything suspicious arise in the course of monitoring.

    3. It may be useful, in managing your perfectly comprehensible anxiety, to keep in mind that periodic monitoring and imaging is only relatively useful in detecting recurrence. Often, it is the patient who calls the attention of the medical team on new or recurring symptoms, thereby triggering testing as appropriate, and eventually (if it is not a false alarm, which it can always be) resulting in the detection of a recurrence.

    I hope this helps. Best of luck to you and your mum.

    PBL
    Last edited by PBL; 09-03-2019 at 10:37 AM.
    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.

  3. #3
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    Quote Originally Posted by PBL View Post
    Hi,

    Sorry you are so concerned about the follow-up and monitoring of your mum's disease. A couple of points here in response to your post:

    1. In deciding on the frequency and/or regularity of PET-CTs, your mum's doctors must juggle several factors, among which possible detrimental effects.
    Yes, it is possible to have too much of a seemingly (i.e., in this instance, reassuring) good thing, as PET-CTs expose your mum to a certain amount of radiation, which - as I am sure you are well aware, can contribute to causing cancer.

    2. In someone who is yet undiagnosed, depending on their symptoms, it can sometimes take a while to connect the dots and reach a diagnosis. This, combined with the particular behaviour of the disease, can explain how someone can be diagnosed at a late stage. Your mum, on the other hand, now does have a diagnosis of cancer, and her doctors are not likely to forget it. They will monitor her in the least invasive/ noxious manner, and will not hesitate to carry out any tests they deem necessary - including imaging - should anything suspicious arise in the course of monitoring.

    3. It may be useful, in managing your perfectly comprehensible anxiety, to keep in mind that periodic monitoring and imaging is only relatively useful in detecting recurrence. Often, it is the patient who calls the attention of the medical team on new or recurring symptoms, thereby triggering testing as appropriate, and eventually (if it is not a false alarm, which it can always be) resulting in the detection of a recurrence.

    I hope this helps. Best of luck to you and your mum.

    PBL
    Hi PBL, many thanks for the long and detailed reply! Yes, understand that the doctors are the ones who can make the best assessment on how frequent to make the scan.

    On my end, is there anything I can do? For example, I have set a calendar reminder to ask my mum once a week whether she is experiencing any pain in any parts of her boy. Not sure what else there is I can look out for?

    Thank you once again!

  4. #4
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    Welcome to the forum, so sorry to hear about your Mum.

    If you have scanned through some of the other threads there are strong recommendations to make sure your mum is being cared for at a specialized cancer center which has extensive experience in recognizing and treating these cases. Also don't hesitate to get a second opinion. It is great that you are being a strong and vocal advocate!

    Unfortunately these types of cancers can have moderate symptoms which can be mimicked by normal illnesses and cause a lot of unnecessary anxiety. Perhaps ask your Mum's doctors what specific symptoms they will be monitoring to trigger the need for scans. What triggered the original diagnosis? Was it a rash or skin issue?

    In the shock and concern of initial diagnosis it is easy to let anxiety steal enjoyment of the day. If you are comfortable reading detailed information there is a cancer therapy advisor site which I found helpful as background information to discuss with my doctors.

    Very best wishes for you and your Mum!

  5. #5
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    Quote Originally Posted by jwessel View Post
    Welcome to the forum, so sorry to hear about your Mum.

    If you have scanned through some of the other threads there are strong recommendations to make sure your mum is being cared for at a specialized cancer center which has extensive experience in recognizing and treating these cases. Also don't hesitate to get a second opinion. It is great that you are being a strong and vocal advocate!

    Unfortunately these types of cancers can have moderate symptoms which can be mimicked by normal illnesses and cause a lot of unnecessary anxiety. Perhaps ask your Mum's doctors what specific symptoms they will be monitoring to trigger the need for scans. What triggered the original diagnosis? Was it a rash or skin issue?

    In the shock and concern of initial diagnosis it is easy to let anxiety steal enjoyment of the day. If you are comfortable reading detailed information there is a cancer therapy advisor site which I found helpful as background information to discuss with my doctors.

    Very best wishes for you and your Mum!
    Thanks for your reply. She had eczema and so doctors thought the marks on her skin were just that. Unfortunately, it was actually cancer.

    I did ask the doctors about what symptoms to have a look for and they basically said to look out for anything. They can then decide to proceed to arrange test for that.

    Do you have the cancer therapy advisor site to share? I would like to read it.

    Thank you.

  6. #6
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    Here is the site. https://www.cancertherapyadvisor.com/

    It is important not to overreact to any one source of information and make sure you have medical care you trust. Some of these treatments can be worse than the early stages of the disease and one can easily sacrifice "good" years to early treatment or too much anxiety.

    In my case, warning signs may have been present for 3-5 years before they became more insistent. Treatment would have been the same at every stage. I am thankful at this point that I ignored the early symptoms. I have one major stage left in treatment, and am optimistic that treatment side effects will reduce over time, but am glad that I enjoyed the last 3-5 years with minor symptoms.
    63 years old.
    21 Jan 19 - Victorious Bikram 90 Min Hot Yoga!
    22 Jan 19 - Referred to ER for potential appendicitis, CT w/ contrast was negative for appendicitis but was informed I should see an oncologist ASAP, amused & annoyed
    25 Jan 19 - First visit with oncologist - first words, " I fear we are dealing with a serious form of Lymphoma, some which is not curable", PET Scan and Biopsy ordered, in denial
    14 Feb 19 - "B" symptoms debilitating, on Morphine top off with Extra Strength Tylenol, no longer in denial
    15 Feb 19 - Diagnosed Acute AITL - Stage 3B, 6 cycles CHOP and Auto SCT immediately following recommended, in shock
    01 Mar 19 - First CHOP cycle on way to SCT, resolved to see this thing through!
    19 Jun 19 - Last CHOP cycle
    03 Jul 19 - Scheduled for Transplant
    05 Aug 19 - Transplant deferred, lung surgery to remove growing nodule
    29 Aug 19 - Re-scheduled for Transplant
    23 Sep 19 - Admitted for Auto Transplant
    12 Oct 19 - Discharged from Transplant to home recovery

  7. #7
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    Hi Ferry

    I sorry about your momís illness. I just want to second what the very wise folks above said. First, that you and your mom may be in shock from the news. Second, that your mom should get input from one of your leading specialists. That doctor might not treat your mother, but they could provide confirmation of her diagnosis, and guidance about the best treatment. And finally, like PBL said, donít worry about the less frequent PET scans. Your motherís doctor is right to use them conservatively

    Your mother is lucky to have a child like you! Your love, support, and help with all of these medical details will be immeasurably helpful to her

    Jim

  8. #8
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear this. Q: how much radiation do you want mum to receive? It damages far more than just the cancer. It causes damage by simply pointing the cancer out to us. It probably caused me to develop a bone marrow cancer (20q del MDS) in addition to the two T-Cell Lymphomas (PTCL-NOS, AITL) that I had concurrently. We all have our loved one's best interest at heart. "Time will tell" has never been truer than in the cancer realm.

    I am guessing that her bloodwork is monitored. That will tell part of the story, and symptoms - either arriving or resolving - will tell much of the rest. For perspective, at my last relapse, I had to wait and grow more tumors so that one could be accessible for biopsy. I was hoping that the cancer would progress so that we could identify and treat it. Rather surreal, but it was the best choice. We cannot expect this journey to make entire sense.

    As for me, I would trust doctor. If that is problematic, seek a second consultation or review of pathology and treatment plan.
    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.

 

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