{"id":19942,"date":"2026-02-27T14:32:20","date_gmt":"2026-02-27T14:32:20","guid":{"rendered":"https:\/\/www.lymphoma.ca\/rare-lymphoma-subtypes-patient-stories\/"},"modified":"2026-02-28T13:28:19","modified_gmt":"2026-02-28T13:28:19","slug":"rare-lymphoma-subtypes-patient-stories","status":"publish","type":"post","link":"https:\/\/www.lymphoma.ca\/fr\/rare-lymphoma-subtypes-patient-stories\/","title":{"rendered":"Sous\u2011types rares de lymphome : Histoires de patients"},"content":{"rendered":"[vc_row type=\u00a0\u00bbin_container\u00a0\u00bb full_screen_row_position=\u00a0\u00bbmiddle\u00a0\u00bb column_margin=\u00a0\u00bbdefault\u00a0\u00bb column_direction=\u00a0\u00bbdefault\u00a0\u00bb column_direction_tablet=\u00a0\u00bbdefault\u00a0\u00bb column_direction_phone=\u00a0\u00bbdefault\u00a0\u00bb scene_position=\u00a0\u00bbcenter\u00a0\u00bb text_color=\u00a0\u00bbdark\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb row_border_radius=\u00a0\u00bbnone\u00a0\u00bb row_border_radius_applies=\u00a0\u00bbbg\u00a0\u00bb overflow=\u00a0\u00bbvisible\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb shape_divider_position=\u00a0\u00bbbottom\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb background_color_opacity=\u00a0\u00bb1″ background_hover_color_opacity=\u00a0\u00bb1″ column_backdrop_filter=\u00a0\u00bbnone\u00a0\u00bb column_shadow=\u00a0\u00bbnone\u00a0\u00bb column_border_radius=\u00a0\u00bbnone\u00a0\u00bb column_link_target=\u00a0\u00bb_self\u00a0\u00bb column_position=\u00a0\u00bbdefault\u00a0\u00bb gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ width=\u00a0\u00bb1\/1″ tablet_width_inherit=\u00a0\u00bbdefault\u00a0\u00bb animation_type=\u00a0\u00bbdefault\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb border_type=\u00a0\u00bbsimple\u00a0\u00bb column_border_width=\u00a0\u00bbnone\u00a0\u00bb column_border_style=\u00a0\u00bbsolid\u00a0\u00bb][vc_column_text css=\u00a0\u00bb\u00a0\u00bb text_direction=\u00a0\u00bbdefault\u00a0\u00bb]\n

Les t\u00e9moignages de personnes touch\u00e9es par des sous\u2011types rares de lymphome<\/strong><\/span><\/h2>\n

Recevoir un diagnostic d\u2019un sous\u2011type rare de lymphome peut \u00eatre une exp\u00e9rience profond\u00e9ment isolante. En raison d\u2019un manque de sensibilisation et de parcours de traitement moins \u00e9tablis, les patients et leurs familles doivent souvent composer avec l\u2019incertitude tout en cherchant des renseignements fiables et du soutien.<\/p>\n

Cette page rassemble les voix de plusieurs personnes ayant \u00e9t\u00e9 touch\u00e9es par des sous\u2011types rares de lymphome. \u00c0 travers leurs histoires, patients et proches partagent leur parcours vers le diagnostic, leurs exp\u00e9riences de traitement et la r\u00e9alit\u00e9 quotidienne d\u2019une maladie rare. Ces t\u00e9moignages mettent en lumi\u00e8re non seulement les complexit\u00e9s m\u00e9dicales des lymphomes rares, mais aussi les impacts \u00e9motionnels, sociaux et pratiques trop souvent n\u00e9glig\u00e9s.<\/p>\n

En partageant ces exp\u00e9riences v\u00e9cues, nous souhaitons sensibiliser, amplifier les voix des personnes touch\u00e9es par des lymphomes rares et faire en sorte que leurs r\u00e9alit\u00e9s soient vues, entendues et reconnues.[\/vc_column_text][\/vc_column][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb background_color_opacity=\u00a0\u00bb1″ background_hover_color_opacity=\u00a0\u00bb1″ column_backdrop_filter=\u00a0\u00bbnone\u00a0\u00bb column_shadow=\u00a0\u00bbnone\u00a0\u00bb column_border_radius=\u00a0\u00bbnone\u00a0\u00bb column_link_target=\u00a0\u00bb_self\u00a0\u00bb column_position=\u00a0\u00bbdefault\u00a0\u00bb gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ width=\u00a0\u00bb1\/1″ tablet_width_inherit=\u00a0\u00bbdefault\u00a0\u00bb animation_type=\u00a0\u00bbdefault\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb border_type=\u00a0\u00bbsimple\u00a0\u00bb column_border_width=\u00a0\u00bbnone\u00a0\u00bb column_border_style=\u00a0\u00bbsolid\u00a0\u00bb][divider line_type=\u00a0\u00bbNo Line\u00a0\u00bb][\/vc_column][\/vc_row][vc_row type=\u00a0\u00bbin_container\u00a0\u00bb full_screen_row_position=\u00a0\u00bbmiddle\u00a0\u00bb column_margin=\u00a0\u00bbdefault\u00a0\u00bb column_direction=\u00a0\u00bbdefault\u00a0\u00bb column_direction_tablet=\u00a0\u00bbdefault\u00a0\u00bb column_direction_phone=\u00a0\u00bbdefault\u00a0\u00bb bg_color=\u00a0\u00bbrgba(233,233,233,0.33)\u00a0\u00bb scene_position=\u00a0\u00bbcenter\u00a0\u00bb text_color=\u00a0\u00bbdark\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb row_border_radius=\u00a0\u00bbnone\u00a0\u00bb row_border_radius_applies=\u00a0\u00bbbg\u00a0\u00bb overflow=\u00a0\u00bbvisible\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb shape_divider_position=\u00a0\u00bbbottom\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb gradient_type=\u00a0\u00bbdefault\u00a0\u00bb shape_type=\u00a0\u00bb\u00a0\u00bb][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb background_color_opacity=\u00a0\u00bb1″ background_hover_color_opacity=\u00a0\u00bb1″ column_backdrop_filter=\u00a0\u00bbnone\u00a0\u00bb column_shadow=\u00a0\u00bbnone\u00a0\u00bb column_border_radius=\u00a0\u00bbnone\u00a0\u00bb column_link_target=\u00a0\u00bb_self\u00a0\u00bb column_position=\u00a0\u00bbdefault\u00a0\u00bb gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ width=\u00a0\u00bb2\/3″ tablet_width_inherit=\u00a0\u00bbdefault\u00a0\u00bb animation_type=\u00a0\u00bbdefault\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb border_type=\u00a0\u00bbsimple\u00a0\u00bb column_border_width=\u00a0\u00bbnone\u00a0\u00bb column_border_style=\u00a0\u00bbsolid\u00a0\u00bb][vc_column_text css=\u00a0\u00bb\u00a0\u00bb text_direction=\u00a0\u00bbdefault\u00a0\u00bb]\n

Lymphome B primitif du m\u00e9diastin (LBPM) : L\u2019histoire de Jen<\/strong><\/h2>\n

Le parcours de Jen avec le LBPM a commenc\u00e9 \u00e0 un moment parmi les plus heureux de sa vie : l\u2019arriv\u00e9e de sa fille tant attendue. Durant le troisi\u00e8me trimestre de sa grossesse, elle ressentait une douleur importante qui a d’abord \u00e9t\u00e9 attribu\u00e9e \u00e0 la grossesse. Apr\u00e8s avoir contract\u00e9 la COVID\u201119 et subi une c\u00e9sarienne compliqu\u00e9e, Jen continuait de faire des fi\u00e8vres persistantes. Des examens suppl\u00e9mentaires, incluant une radiographie pulmonaire, ont r\u00e9v\u00e9l\u00e9 une volumineuse …[\/vc_column_text][divider line_type=\u00a0\u00bbNo Line\u00a0\u00bb custom_height=\u00a0\u00bb40″][nectar_btn size=\u00a0\u00bblarge\u00a0\u00bb button_style=\u00a0\u00bbregular\u00a0\u00bb button_color_2=\u00a0\u00bbAccent-Color\u00a0\u00bb icon_family=\u00a0\u00bbnone\u00a0\u00bb text=\u00a0\u00bbLire plus\u00a0\u00bb url=\u00a0\u00bb#Jen\u00a0\u00bb][\/vc_column][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb 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Lymphome T monomorphe \u00e9pith\u00e9liotrope de l\u2019intestin (MEITL) : Zhou Zhou raconte l\u2019histoire de son p\u00e8re<\/strong><\/h2>\n

En janvier 2025, le p\u00e8re de Zhou Zhou a \u00e9t\u00e9 transport\u00e9 \u00e0 l\u2019urgence en raison d\u2019une douleur abdominale s\u00e9v\u00e8re et d\u2019une perte de poids importante. Des images ont r\u00e9v\u00e9l\u00e9 une perforation de l\u2019intestin gr\u00eale, n\u00e9cessitant une chirurgie d\u2019urgence la m\u00eame nuit. 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Lymphome T sous\u2011cutan\u00e9 de type panniculite (LTSP) : L\u2019histoire de Harjeet<\/strong><\/h2>\n

En mai 2019, Harjeet a commenc\u00e9 \u00e0 souffrir de fi\u00e8vres \u00e9lev\u00e9es persistantes sans cause apparente. Des mois de consultations \u00e0 l\u2019urgence, de scans, de biopsies et d\u2019examens approfondis n\u2019ont apport\u00e9 aucune r\u00e9ponse claire \u2014 seulement une gestion temporaire des sympt\u00f4mes. Une biopsie finale a finalement confirm\u00e9 un lymphome LTSP au stade 4. Harjeet a commenc\u00e9 la chimioth\u00e9rapie en ao\u00fbt 2019 et a compl\u00e9t\u00e9 12 cycles, atteignant une r\u00e9mission partielle…[\/vc_column_text][divider line_type=\u00a0\u00bbNo Line\u00a0\u00bb custom_height=\u00a0\u00bb40″][nectar_btn size=\u00a0\u00bblarge\u00a0\u00bb button_style=\u00a0\u00bbregular\u00a0\u00bb button_color_2=\u00a0\u00bbAccent-Color\u00a0\u00bb icon_family=\u00a0\u00bbnone\u00a0\u00bb text=\u00a0\u00bbLire plus\u00a0\u00bb url=\u00a0\u00bb#Harjeet\u00a0\u00bb][\/vc_column][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb 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Macroglobulin\u00e9mie de Waldenstr\u00f6m (MW) : L\u2019histoire de Steven<\/strong><\/h2>\n

Steven a re\u00e7u un diagnostic de MW en 2014 apr\u00e8s avoir remarqu\u00e9 des taches violac\u00e9es sur ses jambes et d\u00e9couvert que son taux d\u2019IgM \u00e9tait anormalement \u00e9lev\u00e9. Il d\u00e9crit son approche de la maladie ainsi : \u00ab\u202fUn jour \u00e0 la fois.\u202f\u00bb Son parcours a \u00e9t\u00e9 particuli\u00e8rement difficile puisque, l\u2019ann\u00e9e pr\u00e9c\u00e9dente, en 2013, il avait \u00e9t\u00e9 hospitalis\u00e9 et diagnostiqu\u00e9 avec un diab\u00e8te de type 2, compliquant davantage sa prise en charge. 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Lymphome du manteau (MCL) : L\u2019histoire de Susan<\/h2>\n

Susan a re\u00e7u un diagnostic de lymphome du manteau en septembre 2020. Elle ne pr\u00e9sentait aucun sympt\u00f4me important, mis \u00e0 part une rate tr\u00e8s hypertrophi\u00e9e \u2014 presque deux fois sa taille normale \u2014 et des analyses sanguines anormales indiquant un faible taux de plaquettes et un taux \u00e9lev\u00e9 de globules blancs. Elle a entrepris un traitement en octobre 2020 comprenant de la bendamustine et du rituximab durant six mois. 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Primary mediastinal B cell lymphoma (PMBCL): Jen\u2019s Story<\/strong><\/h2>\n

Primary Mediastinal B-Cell Lymphoma (PMBCL) is a rare subtype of non-Hodgkin lymphoma that develops from B lymphocytes and typically forms as a tumour in the mediastinum, the area between the lungs. It accounts for approximately 2-4% of non-Hodgkin lymphoma cases and most commonly affects young adults, particularly women. While considered aggressive, many patients respond well to timely treatment.<\/p>\n

\"\"<\/p>\n

Jen\u2019s journey with PMBCL began during one of the most joyful times of her life – welcoming her long-awaited daughter.<\/p>\n

During her third trimester, she experienced significant pain that was initially attributed to pregnancy. After developing COVID-19 and undergoing a complicated C-section, Jen continued to have persistent fevers. Further investigation, including a chest X-ray, revealed a large mediastinal mass. She was soon diagnosed with PMBCL, with a tumour that was affecting her breathing.<\/p>\n

Jen began urgent chemotherapy and faced several complications along the way, including infections, medication reactions, blood clots, and hair loss. Despite the challenges, she completed six months of treatment successfully. Her tumor shrank, and she is now years into remission.<\/p>\n

Jen believes her daughter saved her life, as the delivery led to the investigations that uncovered her cancer. Today, she shares her story to offer hope and raise awareness of rare lymphomas like PMBCL. She encourages others to speak up for themselves, stay persistent when something does not feel right, and never give up on asking for help.<\/p>\n

As Jen says, \u201cfollow your progress and learn about your diagnosis. Though it could be scary, the more you know, the better you can advocate.\u201d Her journey reminds others that even in difficult times, knowledge, persistence, and self-advocacy can make a real difference.[\/vc_column_text][\/vc_column][\/vc_row][vc_row type=\u00a0\u00bbin_container\u00a0\u00bb full_screen_row_position=\u00a0\u00bbmiddle\u00a0\u00bb column_margin=\u00a0\u00bbdefault\u00a0\u00bb column_direction=\u00a0\u00bbdefault\u00a0\u00bb column_direction_tablet=\u00a0\u00bbdefault\u00a0\u00bb column_direction_phone=\u00a0\u00bbdefault\u00a0\u00bb scene_position=\u00a0\u00bbcenter\u00a0\u00bb text_color=\u00a0\u00bbdark\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb row_border_radius=\u00a0\u00bbnone\u00a0\u00bb row_border_radius_applies=\u00a0\u00bbbg\u00a0\u00bb overflow=\u00a0\u00bbvisible\u00a0\u00bb id=\u00a0\u00bbZhou\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb shape_divider_position=\u00a0\u00bbbottom\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb gradient_type=\u00a0\u00bbdefault\u00a0\u00bb shape_type=\u00a0\u00bb\u00a0\u00bb][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb background_color_opacity=\u00a0\u00bb1″ background_hover_color_opacity=\u00a0\u00bb1″ column_backdrop_filter=\u00a0\u00bbnone\u00a0\u00bb column_shadow=\u00a0\u00bbnone\u00a0\u00bb column_border_radius=\u00a0\u00bbnone\u00a0\u00bb column_link_target=\u00a0\u00bb_self\u00a0\u00bb column_position=\u00a0\u00bbdefault\u00a0\u00bb gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ width=\u00a0\u00bb1\/1″ tablet_width_inherit=\u00a0\u00bbdefault\u00a0\u00bb animation_type=\u00a0\u00bbdefault\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb border_type=\u00a0\u00bbsimple\u00a0\u00bb column_border_width=\u00a0\u00bbnone\u00a0\u00bb column_border_style=\u00a0\u00bbsolid\u00a0\u00bb][vc_column_text css=\u00a0\u00bb\u00a0\u00bb text_direction=\u00a0\u00bbdefault\u00a0\u00bb]\n

Monomorphic Epitheliotropic Intestinal T-Cell Lymphoma (MEITL): Zhou Zhou shares his father\u2019s story<\/strong><\/h2>\n

Monomorphic Epitheliotropic Intestinal T-Cell Lymphoma (MEITL) is an extremely rare and aggressive subtype of peripheral T-cell lymphoma. It develops from abnormal T lymphocytes in the lining of the small intestine and is known for its rapid progression and serious complications, including bowel perforation, obstruction, and bleeding. MEITL is classified under intestinal T-cell lymphomas and behaves much more aggressively than many common B-cell lymphomas.<\/p>\n

In Canada, T-cell lymphomas account for only about 10\u201315% of all non-Hodgkin lymphomas, and MEITL represents only a very small fraction of those cases. That means only a handful of Canadians are diagnosed with this specific subtype each year. Because of its rarity, there is limited research compared to more common lymphomas, and outcomes remain challenging. Many patients require intensive chemotherapy, and even then, relapse rates are high. The need for improved therapies and access to emerging treatments in Canada remains critical.<\/p>\n

\"\"<\/p>\n

In January 2025, Zhou Zhou\u2019s father was rushed to the emergency room with severe abdominal pain and significant weight loss. Imaging revealed a perforation in his small bowel, and he underwent emergency surgery that same night. Shortly after, the family learned that the perforation was caused by lymphoma. Further testing confirmed a diagnosis of MEITL – a disease they had never heard of before.<\/p>\n

He began chemotherapy while still recovering from major surgery. The following months were marked by long hospital stays, infectious complications, and intensive treatment. Despite receiving chemotherapy as planned, his condition became increasingly complex.<\/p>\n

By early May, doctors confirmed that the lymphoma had progressed. The treatment had not been effective, and he was too weak to continue further therapy. With limited options remaining, the family made the difficult decision to focus on comfort and quality of life. He passed away on May 19, 2025, at the age of 56.<\/p>\n

Zhou Zhou now shares his father\u2019s story to raise awareness about rare T-cell lymphomas like MEITL. He hopes that through continued research, improved access to emerging therapies, and greater awareness in Canada, future patients will have more treatment options and better outcomes.<\/p>\n

For more information on Peripheral T-Cell Lymphomas, you can watch Lymphoma Canada\u2019s conference session featuring Dr. Kerry Savage: <\/strong>https:\/\/www.youtube.com\/watch?v=LyFVpiePJQE<\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row type=\u00a0\u00bbin_container\u00a0\u00bb full_screen_row_position=\u00a0\u00bbmiddle\u00a0\u00bb column_margin=\u00a0\u00bbdefault\u00a0\u00bb column_direction=\u00a0\u00bbdefault\u00a0\u00bb column_direction_tablet=\u00a0\u00bbdefault\u00a0\u00bb column_direction_phone=\u00a0\u00bbdefault\u00a0\u00bb scene_position=\u00a0\u00bbcenter\u00a0\u00bb text_color=\u00a0\u00bbdark\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb row_border_radius=\u00a0\u00bbnone\u00a0\u00bb row_border_radius_applies=\u00a0\u00bbbg\u00a0\u00bb overflow=\u00a0\u00bbvisible\u00a0\u00bb id=\u00a0\u00bbHarjeet\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb shape_divider_position=\u00a0\u00bbbottom\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb gradient_type=\u00a0\u00bbdefault\u00a0\u00bb shape_type=\u00a0\u00bb\u00a0\u00bb][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb background_color_opacity=\u00a0\u00bb1″ background_hover_color_opacity=\u00a0\u00bb1″ column_backdrop_filter=\u00a0\u00bbnone\u00a0\u00bb column_shadow=\u00a0\u00bbnone\u00a0\u00bb column_border_radius=\u00a0\u00bbnone\u00a0\u00bb column_link_target=\u00a0\u00bb_self\u00a0\u00bb column_position=\u00a0\u00bbdefault\u00a0\u00bb gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ width=\u00a0\u00bb1\/1″ tablet_width_inherit=\u00a0\u00bbdefault\u00a0\u00bb animation_type=\u00a0\u00bbdefault\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb border_type=\u00a0\u00bbsimple\u00a0\u00bb column_border_width=\u00a0\u00bbnone\u00a0\u00bb column_border_style=\u00a0\u00bbsolid\u00a0\u00bb][vc_column_text css=\u00a0\u00bb\u00a0\u00bb text_direction=\u00a0\u00bbdefault\u00a0\u00bb]\n

Subcutaneous Panniculitis-Like T-Cell Lymphoma (SPTCL): Harjeet\u2019s Story<\/strong><\/h2>\n

Subcutaneous Panniculitis-Like T-Cell Lymphoma (SPTCL) is an extremely rare subtype of T-cell lymphoma that primarily affects the fatty tissue beneath the skin. It is classified as a peripheral T-cell lymphoma and represents only a very small fraction of non-Hodgkin lymphoma cases in Canada. Because of its rarity, diagnosis can be complex and patients may face delays before receiving clear answers.<\/p>\n

\"\"<\/p>\n

In May 2019, Harjeet began experiencing persistent high fevers with no clear cause. Months of emergency room visits, imaging scans, biopsies, and extensive testing brought no definitive diagnosis – only temporary symptom management.<\/p>\n

A final biopsy eventually confirmed stage 4 SPTCL.<\/p>\n

Harjeet began chemotherapy in August 2019 and completed 12 rounds, achieving partial remission. In April 2020, during the height of the COVID-19 pandemic, she underwent a stem cell transplant, with her brother serving as her donor. The transplant required 32 days of isolation without visitors. It was a physically and emotionally demanding experience – but ultimately successful.<\/p>\n

Today, Harjeet is a survivor. Seven years post-diagnosis and six years post-transplant, she has no evidence of disease and continues regular follow-up care.<\/p>\n

\u201cAs my blood cancer was so rare and at stage 4, I couldn\u2019t find anyone with a similar type of cancer, making it increasingly difficult. I joined Lymphoma Canada\u2019s community to find support and connections.\u201d<\/em><\/p>\n

Advocacy is deeply important to Harjeet, and this past year she was featured in Lymphoma Canada\u2019s conference panel discussion, where she shared her experience and the importance of patient voice in shared decision making.<\/p>\n

Watch the discussion \u201cShared Decision Making \u2013 Aligning Treatment with What Matters Most\u201d here: <\/strong>https:\/\/www.youtube.com\/watch?v=FOGMqvg7mf0<\/strong><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row type=\u00a0\u00bbin_container\u00a0\u00bb full_screen_row_position=\u00a0\u00bbmiddle\u00a0\u00bb column_margin=\u00a0\u00bbdefault\u00a0\u00bb column_direction=\u00a0\u00bbdefault\u00a0\u00bb column_direction_tablet=\u00a0\u00bbdefault\u00a0\u00bb column_direction_phone=\u00a0\u00bbdefault\u00a0\u00bb scene_position=\u00a0\u00bbcenter\u00a0\u00bb text_color=\u00a0\u00bbdark\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb row_border_radius=\u00a0\u00bbnone\u00a0\u00bb row_border_radius_applies=\u00a0\u00bbbg\u00a0\u00bb overflow=\u00a0\u00bbvisible\u00a0\u00bb id=\u00a0\u00bbSteven\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb shape_divider_position=\u00a0\u00bbbottom\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb gradient_type=\u00a0\u00bbdefault\u00a0\u00bb shape_type=\u00a0\u00bb\u00a0\u00bb][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb background_color_opacity=\u00a0\u00bb1″ background_hover_color_opacity=\u00a0\u00bb1″ column_backdrop_filter=\u00a0\u00bbnone\u00a0\u00bb column_shadow=\u00a0\u00bbnone\u00a0\u00bb column_border_radius=\u00a0\u00bbnone\u00a0\u00bb column_link_target=\u00a0\u00bb_self\u00a0\u00bb column_position=\u00a0\u00bbdefault\u00a0\u00bb gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ width=\u00a0\u00bb1\/1″ tablet_width_inherit=\u00a0\u00bbdefault\u00a0\u00bb animation_type=\u00a0\u00bbdefault\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb border_type=\u00a0\u00bbsimple\u00a0\u00bb column_border_width=\u00a0\u00bbnone\u00a0\u00bb column_border_style=\u00a0\u00bbsolid\u00a0\u00bb][vc_column_text css=\u00a0\u00bb\u00a0\u00bb text_direction=\u00a0\u00bbdefault\u00a0\u00bb]\n

Waldenstr\u00f6m\u2019s Macroglobulinemia (WM): Steven\u2019s Story<\/strong><\/h2>\n

Waldenstrom macroglobulinemia (WM) is a rare, slow-growing type of non-Hodgkin lymphoma, a cancer of the blood and immune system. In WM, the body produces too much of an abnormal protein called IgM (immunoglobulin M), an antibody that normally helps fight infection. When IgM levels become too high, the blood can become thicker than normal, which may lead to symptoms such as fatigue, weakness, headaches, vision changes, or bleeding problems.<\/p>\n

WM is uncommon in Canada and around the world. Because it can behave differently from person to person, patients typically need regular monitoring and personalized treatment plans based on their symptoms and overall health.<\/p>\n

\"\"<\/p>\n

Steven was diagnosed with WM in 2014 after noticing purple spots on his legs and discovering his IgM levels were abnormally high. He describes his approach to managing the disease as, \u201cTake it one day at a time.\u201d His journey was particularly challenging because the year before, in 2013, he had been hospitalized and diagnosed with type 2 diabetes, adding complexity to his care.<\/p>\n

Over the years, Steven has undergone several treatments, including rituximab with cyclophosphamide, ibrutinib (Imbruvica), IVIG therapy, and most recently zanubrutinib (Brukinsa). He has navigated care across multiple cities, working with a range of specialists to manage his condition.<\/p>\n

Steven shares his story to encourage others living with rare lymphomas, highlighting the importance of persistence, self-advocacy, and staying connected with knowledgeable healthcare teams.<\/p>\n

For more information on the management of Waldenstrom Macroglobulinemia, view Lymphoma Canada\u2019s conference session featuring Dr. Neil Berinstein: <\/strong>https:\/\/www.youtube.com\/watch?v=ciBR4AqbKio<\/strong><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row type=\u00a0\u00bbin_container\u00a0\u00bb full_screen_row_position=\u00a0\u00bbmiddle\u00a0\u00bb column_margin=\u00a0\u00bbdefault\u00a0\u00bb column_direction=\u00a0\u00bbdefault\u00a0\u00bb column_direction_tablet=\u00a0\u00bbdefault\u00a0\u00bb column_direction_phone=\u00a0\u00bbdefault\u00a0\u00bb scene_position=\u00a0\u00bbcenter\u00a0\u00bb text_color=\u00a0\u00bbdark\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb row_border_radius=\u00a0\u00bbnone\u00a0\u00bb row_border_radius_applies=\u00a0\u00bbbg\u00a0\u00bb overflow=\u00a0\u00bbvisible\u00a0\u00bb id=\u00a0\u00bbSusan\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb shape_divider_position=\u00a0\u00bbbottom\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb gradient_type=\u00a0\u00bbdefault\u00a0\u00bb shape_type=\u00a0\u00bb\u00a0\u00bb][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb background_color_opacity=\u00a0\u00bb1″ background_hover_color_opacity=\u00a0\u00bb1″ column_backdrop_filter=\u00a0\u00bbnone\u00a0\u00bb column_shadow=\u00a0\u00bbnone\u00a0\u00bb column_border_radius=\u00a0\u00bbnone\u00a0\u00bb column_link_target=\u00a0\u00bb_self\u00a0\u00bb column_position=\u00a0\u00bbdefault\u00a0\u00bb gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ width=\u00a0\u00bb1\/1″ tablet_width_inherit=\u00a0\u00bbdefault\u00a0\u00bb animation_type=\u00a0\u00bbdefault\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb border_type=\u00a0\u00bbsimple\u00a0\u00bb column_border_width=\u00a0\u00bbnone\u00a0\u00bb column_border_style=\u00a0\u00bbsolid\u00a0\u00bb][vc_column_text css=\u00a0\u00bb\u00a0\u00bb text_direction=\u00a0\u00bbdefault\u00a0\u00bb]\n

Mantle Cell Lymphoma (MCL): Susan\u2019s Story<\/strong><\/h2>\n

Mantle cell lymphoma (MCL) is a rare type of blood cancer that develops in the lymphatic system, part of the body\u2019s immune defense. It arises from abnormal B lymphocytes (a type of white blood cell) in the \u201cmantle zone\u201d of the lymph nodes. MCL is a mature B-cell non-Hodgkin lymphoma (NHL) that accounts for 3\u201310% of new NHL cases in Canada. It is most often diagnosed in adults over the age of 60 and occurs more frequently in men. Because of its rarity, many Canadians have never heard of MCL before diagnosis.<\/p>\n

Susan was diagnosed with Mantle Cell Lymphoma in September 2020. She had no significant symptoms at the time, other than an enlarged spleen – nearly twice its normal size – and abnormal bloodwork showing a low platelet count and elevated white blood cell count. She began treatment in October 2020 with bendamustine and rituximab for six months. She tolerated the treatment relatively well, and in March 2021, after completing therapy, she was told she was in remission \u2013 which she continues to maintain today.<\/p>\n

Following her initial treatment, Susan received maintenance rituximab injections every three months for an additional year, completing that phase in January 2023. Although she worries about the possibility of relapse, she makes a conscious effort to live fully and appreciate each day.<\/p>\n

Susan encourages others facing a diagnosis to have faith in their specialists – \u201cthey truly have your back\u201d. She is also a regular participant in Lymphoma Canada\u2019s educational webinars, staying informed and connected with the lymphoma community.<\/p>\n

For more information on the management of Mantle Cell Lymphoma, please visit the following conference session featuring Dr. Mary Margaret Keating: <\/strong>https:\/\/www.youtube.com\/watch?v=ZnjJq4jFod8<\/strong><\/a>[\/vc_column_text][\/vc_column][\/vc_row][vc_row type=\u00a0\u00bbfull_width_background\u00a0\u00bb full_screen_row_position=\u00a0\u00bbmiddle\u00a0\u00bb column_margin=\u00a0\u00bbdefault\u00a0\u00bb column_direction=\u00a0\u00bbdefault\u00a0\u00bb column_direction_tablet=\u00a0\u00bbdefault\u00a0\u00bb column_direction_phone=\u00a0\u00bbdefault\u00a0\u00bb bg_color=\u00a0\u00bbrgba(233,233,233,0.33)\u00a0\u00bb scene_position=\u00a0\u00bbcenter\u00a0\u00bb text_color=\u00a0\u00bbdark\u00a0\u00bb text_align=\u00a0\u00bbleft\u00a0\u00bb row_border_radius=\u00a0\u00bbnone\u00a0\u00bb row_border_radius_applies=\u00a0\u00bbbg\u00a0\u00bb overflow=\u00a0\u00bbvisible\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb shape_divider_position=\u00a0\u00bbbottom\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb gradient_type=\u00a0\u00bbdefault\u00a0\u00bb shape_type=\u00a0\u00bb\u00a0\u00bb][vc_column column_padding=\u00a0\u00bbno-extra-padding\u00a0\u00bb column_padding_tablet=\u00a0\u00bbinherit\u00a0\u00bb column_padding_phone=\u00a0\u00bbinherit\u00a0\u00bb column_padding_position=\u00a0\u00bball\u00a0\u00bb column_element_direction_desktop=\u00a0\u00bbdefault\u00a0\u00bb column_element_spacing=\u00a0\u00bbdefault\u00a0\u00bb desktop_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb tablet_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb phone_text_alignment=\u00a0\u00bbdefault\u00a0\u00bb background_color_opacity=\u00a0\u00bb1″ background_hover_color_opacity=\u00a0\u00bb1″ column_backdrop_filter=\u00a0\u00bbnone\u00a0\u00bb column_shadow=\u00a0\u00bbnone\u00a0\u00bb column_border_radius=\u00a0\u00bbnone\u00a0\u00bb column_link_target=\u00a0\u00bb_self\u00a0\u00bb column_position=\u00a0\u00bbdefault\u00a0\u00bb gradient_direction=\u00a0\u00bbleft_to_right\u00a0\u00bb overlay_strength=\u00a0\u00bb0.3″ width=\u00a0\u00bb1\/1″ tablet_width_inherit=\u00a0\u00bbdefault\u00a0\u00bb animation_type=\u00a0\u00bbdefault\u00a0\u00bb bg_image_animation=\u00a0\u00bbnone\u00a0\u00bb border_type=\u00a0\u00bbsimple\u00a0\u00bb column_border_width=\u00a0\u00bbnone\u00a0\u00bb column_border_style=\u00a0\u00bbsolid\u00a0\u00bb][divider line_type=\u00a0\u00bbNo Line\u00a0\u00bb custom_height=\u00a0\u00bb40″][divider line_type=\u00a0\u00bbNo Line\u00a0\u00bb custom_height=\u00a0\u00bb40″][vc_column_text css=\u00a0\u00bb\u00a0\u00bb text_direction=\u00a0\u00bbdefault\u00a0\u00bb]\n

Additional Resources:<\/strong><\/h3>\n

For information on past and upcoming webinars, please visit: \u00a0https:\/\/www.lymphoma.ca\/news-events\/educational-forums-webinars\/<\/a><\/p>\n

Join our monthly virtual support group:\u00a0Lymphoma Canada Wellspring Support Group \u2013 Lymphoma Canada<\/a><\/p>\n

To access our one-on-one peer mentoring program, visit: \u00a0https:\/\/www.lymphoma.ca\/resources\/support\/peer-support-program\/<\/a><\/p>\n

To help advance research and improve the future for Canadians affected by lymphoma, please consider supporting Lymphoma Canada through a donation.[\/vc_column_text][divider line_type=\u00a0\u00bbNo Line\u00a0\u00bb custom_height=\u00a0\u00bb40″][nectar_btn size=\u00a0\u00bblarge\u00a0\u00bb button_style=\u00a0\u00bbregular\u00a0\u00bb button_color_2=\u00a0\u00bbAccent-Color\u00a0\u00bb icon_family=\u00a0\u00bbnone\u00a0\u00bb text=\u00a0\u00bbDonate Here\u00a0\u00bb url=\u00a0\u00bbhttps:\/\/secure.e2rm.com\/registrant\/DonationPage.aspx?eventid=121854″][divider line_type=\u00a0\u00bbNo Line\u00a0\u00bb custom_height=\u00a0\u00bb40″][divider line_type=\u00a0\u00bbNo Line\u00a0\u00bb custom_height=\u00a0\u00bb40″][\/vc_column][\/vc_row]\n","protected":false},"excerpt":{"rendered":"

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