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Thread: Mum has mycosis fungoides and eczema

  1. #1
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    Mum has mycosis fungoides and eczema

    Hi everyone,

    My mum was recently diagnosed with mycosis fungoides. She also has eczema. What this has means is that her skin is incredibly itchy if she feels hot. It doesn't help if she turns on the air condition as it would be too dry for her skin making it itch even more.

    Does anyone have a good solution to this? Or at least something which can alleviate the itch.

    It's sad to see her constantly wake up at night cause of the itch.

    Thank you.

  2. #2
    Administrator Top User Kermica's Avatar
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    Hi there ferrry and welcome, though I am sorry you have reason to be here. I have attached a link from the Cutaneous Lymphoma Foundation about your Mom's problem, I hope it proves helpful in some small way. Also, since your Mom's actual diagnsis is Lymphoma, let me know if you would like me tomove her thread to that Forum and I will be happy to take care of that. Here is the link, best of luck to your Mom: https://www.clfoundation.org/sites/d...2011_Final.pdf

    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.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Welcome ferrry, but sorry to welcome you here under these circumstances. As odd as it sounds, mycosis fungoides is not a skin cancer, but lymphoma in the skin. So, I have moved your thread to the non-Hodgkin's lymphoma forum. Itch is fairly common even in non-skin related cases of lymphoma. The itch has been studied and does not seem to be caused by the same mechanism as a normal itch. It remains a difficult condition to address, yet is normally relieved by treatment.

    Everything from topical steroids, to ultra-violet light-based based therapy to chemotherapy and non-chemo biological drugs are used to combat the lymphoma and associated symptoms. Eczema is an autoimmune disease in which the body's own immune system attacks the skin and it seems difficult to fight effectively while also combating a cancer. The two require essentially opposing therapies: allowing the immune system to work against the skin lymphoma and suppressing the immune system to alleviate the eczema. Is your mom currently in treatment?

    I have had intense itching since my stem cell transplant, but the cause is different and the solution I came up with is ill advised for someone with a skin lymphoma. Heavy doses of systemic steroids certainly can help, but have their own side effects and toxicity. I would think that a consultation with both hematologist and dermatologist who specialize in T-Cell Cutaneous Lymphomas would provide some useful tactics to against the itching.

    I would hope that she is being seen by specialists in T-Cell Lymphomas, as this is a tiny corner of the cancer world and very specialized treatment is required. General oncologists/hematologists/dermatologists very likely do not have the expertise needed to effectively treat this condition.

    As a general rule, cold will numb the neuro transmitters and reduce or eliminate the itch. However, it also reduces circulation, which is detrimental if she is receiving oral or infused medication. It is a frustrating tightrope walk.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 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 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 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 measureable - released from hospital.
    08/13/15 Day 26 - 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.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow aspiration/biopsy reveals 2% cells with 20q Deletion, a form of Myelodysplastic Syndrome, yet a different form than in 2015. Active surveillance is the course of choice. Two sub-types of lymphoid malignancies and two of myeloid malignancy lend a certain symmetry to the journey.

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

  4. #4
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    Hi everyone, many thanks for the replies. Apologies for the late reply as I just came back from a business trip. Would read your post and revert ASAP. Thank you!

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    Quote Originally Posted by po18guy View Post
    Welcome ferrry, but sorry to welcome you here under these circumstances. As odd as it sounds, mycosis fungoides is not a skin cancer, but lymphoma in the skin. So, I have moved your thread to the non-Hodgkin's lymphoma forum. Itch is fairly common even in non-skin related cases of lymphoma. The itch has been studied and does not seem to be caused by the same mechanism as a normal itch. It remains a difficult condition to address, yet is normally relieved by treatment.

    Everything from topical steroids, to ultra-violet light-based based therapy to chemotherapy and non-chemo biological drugs are used to combat the lymphoma and associated symptoms. Eczema is an autoimmune disease in which the body's own immune system attacks the skin and it seems difficult to fight effectively while also combating a cancer. The two require essentially opposing therapies: allowing the immune system to work against the skin lymphoma and suppressing the immune system to alleviate the eczema. Is your mom currently in treatment?

    I have had intense itching since my stem cell transplant, but the cause is different and the solution I came up with is ill advised for someone with a skin lymphoma. Heavy doses of systemic steroids certainly can help, but have their own side effects and toxicity. I would think that a consultation with both hematologist and dermatologist who specialize in T-Cell Cutaneous Lymphomas would provide some useful tactics to against the itching.

    I would hope that she is being seen by specialists in T-Cell Lymphomas, as this is a tiny corner of the cancer world and very specialized treatment is required. General oncologists/hematologists/dermatologists very likely do not have the expertise needed to effectively treat this condition.

    As a general rule, cold will numb the neuro transmitters and reduce or eliminate the itch. However, it also reduces circulation, which is detrimental if she is receiving oral or infused medication. It is a frustrating tightrope walk.
    Hi po18guy, appreciate the lengthy reply. My mum is currently undergoing radiotherapy. Previously she went for PUVA but it proved ineffective. The radiotherapy has made her skin incredibly dry and itchy. She has consulted with a lymphoma doctor who has given her antihistamine but sometimes it doesn't work and so her sleep gets badly affected.

    Do you have any products to suggest that can cool her while not making her skin dry? Air conditioning makes her skin too dry and causes itching. I am thinking of getting her those cooling pads they use for fever patients.

    Thank you.

  6. #6
    Super Moderator Top User po18guy's Avatar
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    Here is a link to the Lymphoma Research Foundation page on Cutaneous (skin) Lymphomas. Several drugs are listed, and I would think that they would be preferable to radiotherapy, due to the side effects of the radiation.

    http://www.lymphoma.org/site/pp.asp?...mK8E&b=6300151

    Other than that, a moisturizing cream or lotion such as CeraVe, Sarna or Penaten might help. They would be worth trying.

  7. #7
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    Cooling mattress for mum with itchy skin

    Hi everyone,

    My mum has mycosis fungoides so her skin is incredibly itchy. She currently takes antihistamine but it is not very effective. Someone responded in another post of mine that you could numb the itch with cold and so I was researching on mattresses that can keep her body cold.

    I managed to find one but would like to see if other forum members have similar products to recommend. Have attached the one I found online here (link)

    Stay strong

  8. #8
    Super Moderator Top User po18guy's Avatar
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    I merged your threads so that replies will be easier to keep track of. A cooling mattress might be worth trying, but her body temperature must be monitored to make sure she does not then suffer from hypothermia. Has she tried topical steroids? They are one of the primary treatments of cutaneous lymphoma, as well as eczema. They are anti-inflammatory and should, if strong enough, provide considerable relief. And, the anti-inflammatory quality of the steroids make it harder for the lymphoma to grow.

  9. #9
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    Quote Originally Posted by po18guy View Post
    I merged your threads so that replies will be easier to keep track of. A cooling mattress might be worth trying, but her body temperature must be monitored to make sure she does not then suffer from hypothermia. Has she tried topical steroids? They are one of the primary treatments of cutaneous lymphoma, as well as eczema. They are anti-inflammatory and should, if strong enough, provide considerable relief. And, the anti-inflammatory quality of the steroids make it harder for the lymphoma to grow.
    Thanks po18guy. I would check it out with her on this. Looks like no one has an alternative mattress to recommend. I would buy that and update you guys on how it goes.

 

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