Yu want fɔ no bak bɔt dis blɔd sik we nɔ kin bɔku? Lɛ wi tɔk bɔt Waldenström Macroglobulinemia insay simpul wɔd dɛn!

Yu dɔn ɛva yɛri bɔt Waldenström Macroglobulinemia? Na lɔng nem we at fɔ kɔl am, nɔto so? Na tru tru wan kayn kansa we de gro sloslo na di blɔd. Yu nɔ go dɔn yɛri bɔt am, bikɔs na sik we nɔ kin apin so ɔltɛm. Bot dat na okay, tide wi go tok abaut am simpul, fo we we yu go andastan.

Wetin na Waldenstrom makroglobulinemia (WM)?

Fɔ tɔk am simpul wan, Waldenstrom macroglobulinemia, ɔ WM fɔ shɔt, na blɔd kansa . Na wan kayn kansa we dɛn kɔl non-Hodgkin lymphoma, we dɛn kin kɔl bak lymphoplasmacytic lymphoma. Fɔ tru, i nɔ kin apin so ɔltɛm. Jɔs tink bɔt, ivin na kɔntri lɛk Amɛrika, na tri to 4 pipul dɛn nɔmɔ pan wan milyɔn pipul dɛn kin gɛt dis sik.

So, aw dis `(WM)` de divεlכp? Wi gɛt bon mɛro na wi bɔdi, ɛn na de dɛn mek wi blɔd sɛl dɛn. dis sik de bigin we sכm pan di sεl dεm we dεn kכl `(B sεl dεm)` (dεn na wan kayn sεl na wi imyun sistεm, dat na di sεl dεm we de protεkt wi frכm sik) na dis bon mכro bi kεnsar sεl dεm.

Dɛn kansa sɛl ya, instead fɔ lɛ dɛn lɛf dɛn wan, kin bigin fɔ mek mɔ sɛl dɛn lɛk dɛnsɛf. Jɔs lɛk gras we de na fɔrɛst. Wetin kin apin da tɛm de? Di wɛlbɔdi blɔd sɛl dɛn we wi bɔdi nid nɔ gɛt ples, ɛn dɛn kin bigin fɔ stɔp.

• We di rɛd blɔd sɛl dɛn nɔ bɔku, dɛn kin gɛt anemia. Dis kin mek yu fil taya ɛn yu kin fil lɛk se yu nɔ gɛt bɛtɛ kɔlɔ.
• we di wayt bכdi sεl dεm dכn sכmtεm, wan kכndyushכn we dεn kכl ``nyutropenia'' kin apin, we kin mek yu sik mכr.
• We di pletlɛt dɛn (sɛl dɛn we de ɛp fɔ mek di blɔd klɔt) nɔ bɔku (thrombocytopenia), di blɔd nɔ kin stɔp izi wan.

nכto dat nכmכ, dεn kεnsar sεl dεm ya de prodyuz wan abnכmal protin we dεn kכl `(immunoglobulin M)` כ `(IgM)`. we dis `(IgM)` protin tu hכy na di bכdi, wi bכdi de tik, lεk כni . dis dεn kכl am `(hyperviscosity syndrome).` we di bכdi tik lεk dis, i kin at fכ di bכdi fכ fכlכ tru di sכm sכm bכdi vεsul dεm ɔlsay na di bכdi. Dɔn, sɔm siriɔs sayn dɛn kin apin.

Di impɔtant tin na dat, no mɛrɛsin nɔ de fɔ WM yet. Bɔt nɔ wɔri. Tritmɛnt dɛn de we kin ɛp fɔ kɔntrol di sik dɛn, sɔm tɛm dɛn kin ivin pul dɛn, ɛn ɛp yu fɔ gɛt wɛlbɔdi. Bɔrku tɛm WM na sik wae de gro sloslo, so yu kin liv fayn wit am fɔ lɔng lɔng tɛm.

Wetin na di sayn dɛm fɔ dis `(WM)` sik?

Imajin, lɛk wan pan ɛvri 4 pipul dɛn we gɛt dis sik nɔ kin sho ɛni sayn . Dɛn kin jɔs no bɔt dis sik we dɛn go to dɔktɔ fɔ sɔm ɔda rizin. Bɔt, we di sayn dɛn kin sho, bɔku tɛm dɛn kin kam smɔl smɔl . Lɛ wi tek tɛm luk wetin na dɛn sayn ya:

• Wiknɛs ɛn taya ɔltɛm:I kin tan lɛk se di batri dɔn day.
• Fiva: Di bɔdi kin fil wam fɔ natin.
• Anorexia: Nɔ de fil lɛk fɔ it.
• Nayt swet: I de swet bɔku we yu de slip.
• We yu de lɔs yu wet: Yu kin tan lɛk pɔsin fɔ no patikyula rizin.
• Kɔnfyushɔn: I nɔ kin izi fɔ pe atɛnshɔn, i kin mek yu nɔ no wetin fɔ du smɔl.
• Di liva, di splin, ɔ di limf no dɛm we de swel: Na dɔktɔ nɔmɔ go tɛl yu fɔ tru.
• Di sayn dɛm fɔ di periferik nyuropathy, lɛk we di finga ɛn fut finga dɛn kin swɛla : I kin fil lɛk se yu de fil lɛk yu de swɛt, ɔ yu nɔ de fil fayn igen.
• Di sayn dɛn we de sho se blɔd de klɔt: blɔd we de kɔmɔt na yu nos, blɔd we de kɔmɔt na yu gɔm we yu de brus yu tit, diziz, ed we de at, ɛn we yu nɔ de si fayn.

Jɔs bikɔs yu gɛt wan ɔ tu pan dɛn sik ya nɔ min se yu gɛt WM. Bɔt if dɛn sik ya kɔntinyu, i go fayn fɔ mek yu go to dɔktɔ.

Wetin na di rizin dɛn we mek dɛn mek `(WM)`?

Di men tin we kin mek Waldenstrom gɛt di sik we dɛn kɔl macroglobulinemia na di chenj dɛn we kin mek pɔsin gɛt jɛnɛtiks . Mɔr pas 90% pan di pipul dɛm wae gɛt dis sik, ɔr nayn pan tɛn pipul dɛm, gɛt wan muteshon na di jin wae dɛn kɔl MYD88. כlmost 40% pan pipul dεm gεt mכtεshכn bak na di jin we dεn kכl CXCR4. dεn tu jεnεtik mכtεshכn ya de εp di abnכmal sεl dεm na WM fכ divayd kwik kwik wan.

Di impɔtant tin na dat dɛn chenj ya we de apin na di jɛnɛtiks nɔto frɔm dɛn gret gret granpa dɛn . Dat min se dɛn nɔto sɔntin we yu kin gɛt frɔm yu mama ɛn papa, ɛn dɛn nɔto sɔntin we yu kin pas to yu pikin dɛn. Dɛn kin apin ɔlsay na wi layf. Bɔt di wan dɛn we de stɔdi bɔt dis stil nɔ shɔ wetin kin mek dɛn chenj dɛn ya na di jɛnɛtiks fɔs.

Udat dɛn kin gɛt dis sik? (Di tin dɛn we kin mek pɔsin gɛt prɔblɛm)

sכm tin dεm de we de mek di chans fכ divεlכp `(WM)` bכku. Lɛ wi si wetin dɛn bi:

• Ej: Dɛn kin no dis sik mɔr pan pipul dɛm wae ol 65 ia ɔr pas dat.
• Ras: Dis sik kin mɔs pan wayt pipul dɛm.
• Jɛnda: Man dɛn kin gɛt dis sik mɔ.
• Ɔda mɛrɛsin kɔndishɔn dɛn: Yu kin gɛt mɔ risk if yu gɛt sik dɛn lɛk `(Epatitis C)`, `(AIDS)`, `(Sjögren’s Syndrome)`, ɔ wan sik we dɛn kɔl `(MGUS - Monoclonal Gammopathy of Undetermined Significance)` (dis na di prɛkursɔ fɔ `(WM)`). Bɔt i impɔtant fɔ mɛmba se nɔto ɔlman we gɛt `(MGUS)` go divɛlɔp `(WM)`.
• Famili histri: If yu fambul dɛm na yu blɔd dɔn gɛt WM ɔ ɔda kayn lymphoma, yu kin de pan denja bak.

Wetin na de prɔblɛm wae kin kam wit dis sik?

Sɔm siriɔs kes dɛm, WM kin mek ɔda kɔmplikɛshɔn.

• Amyloidosis: Dis na we di protin dεm we nכ de wok fayn de put insay כgan dεm lεk di at, di lכng dεm, εn di kidni dεm.
• Cryoglobulinemia: Insay dis kכndyushכn, sכm bכdi protin dεm we de ansa kol kin kכmכt na di limb dεm εn kכlכm togeda. Dis kin mek yu fil pen ɛn blu/wayt kɔlɔ (cyanosis).

Aw dɔktɔ dɛn kin no bɔt dis sik? (Diagnosis) .

Yu dɔktɔ kin yuz sɔm tɛst fɔ no if yu gɛt WM. dεn kin mεnli luk fכ kεnsar sεl dεm εn di IgM protin we wi bin tכk bכt bifo.

• Blɔd ɛn urine tɛst: Dɛn kin tek blɔd ɛn urine sɛmpul fɔ chɛk fɔ si if sayn dɛn de fɔ WM. dεn de luk fכ tin dεm lεk lכw bכdi sεl dεm εn abnכmal IgM protin dεm.
• Imej tɛst: Dɛn kin yuz CT skan ɔ CT-PET skan, we na CT ɛn PET skan we dɛn jɔyn fɔ luk fɔ sayn dɛn fɔ WM insay di bɔdi. dis tεst dεm de luk fכ tin dεm lεk di כgan dεm we swel εn di limf no dεm.
• Ay egzam: I de chɛk fɔ si if blɔd de kɔmɔt insay di bak pat pan di yay. Dis na sayn fɔ se blɔd dɔn rɔtin.
• Bon mכro bayopsi: Dis na fכ tek sכm sכm bon mכro εn luk am כnda maykroskכp fכ si if εni kεnsar sεl dεm de.

Aw dɛn kin trit `(WM)`?

As wi bin dɔn tɔk bifo tɛm, no mɛrɛsin nɔ de fɔ dis sik yet. So, di bɛst tritmɛnt na fɔ pul di sik dɛn wit smɔl sayd ɛfɛkt . Yu dɔktɔ go tɔk to yu ɛn mek wan tritmɛnt plan we go fayn fɔ yu. Na sɔm pan di tritmɛnt opshɔn dɛm fɔ `(WM)`:

• Wachful wet: If yu nɔ gɛt ɛni sayn, yu dɔktɔ nɔ go bigin fɔ trit yu. Sɔm pipul dɛm wae gɛt WM nɔr nid tritmɛnt fɔ lɔng lɔng tɛm.
• Plasmapheresis / plasma exchange: dis involv fכ yuz mashin fכ filta di abnכmal IgM protin frכm di plasma, di likwid pat pan yu bכdi. Dɔn dɛn kin put di plasma we dɛn dɔn klin bak insay yu blɔd. Dɛn kin yuz dis tritmɛnt fɔ ridyus di sayn dɛm we de sho se blɔd de klɔt.
• Imyun tεrapi: Dis tritmεnt de yuz yu כwn imyun sistεm fכ pwεl כ slo di WM sεl dεm we de gro. Bɔku tɛm dɛn kin gi di mɛrɛsin we dɛn kɔl Rituximab (Rituxan®) in wan ɔ wit kemotɛrapi.
• Kimotɛrapi: Dɛn kin gi mɛrɛsin dɛn we de kil kansa sɛl dɛn wan ɔ dɛn kin gi am wit imyunotɛrapi.
• Kɔtikosterɔyd: Dɛn kin gi wan kayn stɛroyd, lɛk dɛksametazɔn, wit di imyunosuprɛsiv tɛrapi ɛn kemotɛrapi. Dɛn kin ɛp fɔ fɛt kansa pan ɔl we dɛn kin ridyus di sayd ɛfɛkt dɛn we di tritmɛnt kin gɛt.
• Tɛrapi we dɛn de tɔk to:Dis tritmɛnt de wok bay we i de blok di prɔtin dɛn we di kansa sɛl dɛn de yuz fɔ gro. Ibrutinib (Imbruvica®) ɛn zanubrutinib (Brukinsa®) na tu tritmɛnt dɛn we dɛn kin yuz fɔ mɛn pipul dɛn we di U.S. Food and Drug Administration (FDA) dɔn gri fɔ fɔ trit WM.
• stεm sεl transplant: insay dis, dεn de transplant hεlty bon mכro fכ tek di bon mכro we abnכmal sεl dεm afekt. Dɛn nɔ kin du dis bɔku tɛm, ɛn dɛn kin du am nɔmɔ pan di wan dɛn we dɛn dɔn pik.

Ustɛm a fɔ go to dɔktɔ?

If dɛn dɔn no se yu gɛt WM, tɔk to yu dɔktɔ wantɛm wantɛm if yu gɛt ɛni nyu sayn ɔ if yu de wɔri bɔt ɛni sik we dɔn de. We dɛn dɔn no se yu gɛt WM, i impɔtant fɔ aks kwɛstyɔn fɔ no wetin fɔ ɛkspɛkt. Na sɔm kwɛstyɔn dɛn we yu kin aks yu dɔktɔ:

• Aw siriɔs `(WM)` de? Aw dis go afɛkt mi layf?
• Wetin a fɔ ɛkspɛkt fɔ shɔt ɛn lɔng tɛm?
• A nid fɔ bigin tritmɛnt wantɛm wantɛm?
• Us kayn tritmɛnt yu kin advays?
• Us sayd ɛfɛkt dɛn kin ɛkspɛkt frɔm di tritmɛnt?

Wetin a go ɛkspɛkt if a gɛt dis sik?

Nɔto ɔlman we gɛt wan sik we de go bifo smɔl smɔl lɛk Waldenstrom in macroglobulinemia na di sem. Risach sho se 66%, ɔr pas tu pan tri pipul dɛm, stil de alayv 10 ia afta dɛn dɔn no se dɛn gɛt dis sik. Bɔt di tɛm we pɔsin kin liv kin difrɛn we i ol . Bɔrku pipul dɛm wae pas 65 ia (di ej grup wae dɛn kin no se gɛt dis sik) kin day bikɔs ɔf tin dɛm wae nɔr gɛt natin fɔ du wit WM.

Bɔrku tin kin afɛkt di prɔgnosis fɔ yu sik. Fɔ ɛgzampul:

• yu ej
• Di rizɔlt fɔ di blɔd tɛst
• di kayn jεnεtik mכtεshכn (sכmtεm di absכns fכ di `(MYD88)` mכtεshכn kin sho se bad autkam)

If yu gɛt kwɛstyɔn bɔt yu sik, tɔk to yu dɔktɔ . I sabi yu gud gud wan ɛn di tin dɛn we kin afɛkt yu wɛlbɔdi.

Ɛnitin de we a go du fɔ mek a fil fayn?

Fɔ liv wit limfoma lɛk Waldenstrom in macroglobulinemia kin min fɔ mek sɔm big chenj dɛn na yu layf. I impɔtant fɔ yuz ɔl di tin dɛn we yu gɛt. Tɔk to yu dɔktɔ bɔt us it fɔ it ɛn us tin dɛn fɔ du fɔ kia fɔ yusɛf .

Fɔ mek yu nɔ fil lɛk yu wan, kɔnɛkt wit ɔda pipul dɛn we gɛt dis sik we nɔ kin bɔku. Ivin if yu fil da we de fɔs we yu kam fɔ no se yu gɛt dis sik, nɔto yu wangren de du dis waka . Aks yu dɔktɔ ɛn jɔyn sɔpɔt grup dɛn.

Fɔ dɔn, mɛmba dis.

Risach pipul dɛn nɔ dɔn fɛn mɛrɛsin yet fɔ Waldenstrom macroglobulinemia (WM). Bɔt dɛn dɔn fɛn bɔku tritmɛnt dɛn we de mek i izi fɔ liv wit dis sik . Bɔrku pipul dɛn kin liv wit dis sik fɔ lɔng tɛm ɛn nɔr kin gɛt ɛni sayn. Nyu tritmɛnt dɛn de alaw pipul dɛm wae gɛt WM fɔ liv lɔng pas aw dɛn bin de liv bifo, ɛn nɔr de sakrifays dɛn kwaliti layf.

If yu gɛt dis diagnosis, nɔr panik ɛn aks yu dɔktɔ bɔt aw yu go si am fɔ shɔt tɛm ɛn fɔ lɔng tɛm. Dɛn go ɛp yu fɔ disayd di bɛst tritmɛnt plan fɔ yu. Mɛmba se, if yu gi yu di rayt mɛrɛsin ɛn sɔpɔt yu, yu go ebul fɔ liv fayn fayn wan wit dis sik.

` Waldenstrom makroglobulinemia, WM, blכd kεnsar, IgM protin, haypaviskositi sεndrכm, bon mכro, limfoma