Blood Cancer Treatment

multiple myeloma. a rare diseaseof blood andbones, and despiterball of the medical advances andall the famous faces behind it,lbit stillremains one of thedeadliest cancers with one ofnb the lowest survival rates onrecord. i'mhere in cambridge,hb massachusetts to meet theexperts, the survivors,thenb warriors determined to defeatthis double edged cancer. hi,tbi'm ereka vetrini and welcometoaccess health, a special edition4bwhere we go behind the mystery. a(music).9b,thephone rang and it was thedoctor, >b0and i could tell that he wasupset from hisqb3voice.i sank to the depths ofthe earth and called my husbandrb7and told him it just felt likeanout-of-body experience. i waspbnot just stunned, but i was kindof at sea. my first reactionqbwas,"how long do i have?" mostpeople with a cancer

diagnosisjb think that you're talking tosomebodyelse. it couldn'tsbpossibly be happening to me. theoncologist reviewed the numberspbonthe screen, turned to me atthe end, and said, "you have asbmalignancy. it's called multiplemyeloma."and i wanted to live,qband i wanted to see our daughtergrow up, and i wanted to growsboldwith my husband. and then ibegan immediately to think aboutrbmy family. i didn't thinkaboutdying because i guess i knew inmb"the back of my mind that was areal possibility,but i waspb%mostly concerned about my familybeing able to get along withkb(their lives if i were notaround. (music). i had run outqb.of medication for my allergiesanddecided to call the doctor,mb3but at the same time i wasstarting to be extremely tired.pb7andit was a deep dark tiredthat did not respond

to sleep orsbrest. and i mentioned it to thedoctorand thought that he wouldnb do his usual, just give me aprescription soi could get mysbmedication and go off to the seaislands. in the summer of 2013,pbi developeda very pesky backache. it just wouldn't go away.pbthe orthopedist with whom i hadbeendealing with a long timeqbalways said, "oh, come on tom.it's your lifestyle. you're outrbtherebanging around." you know,i had been riding bikes acrossjbsouth america. i was birdhuntingin africa. i was on aqblot of airplanes, but it didn'tdisappear. so, finally, at thesbmayoclinic, my internist becamevery suspicious and said, "backrb"aches shouldn't last thatlong."i was a health professional. ikb%travelled a lot, and i justthought that the tired wasapb(result of that. and so he didwhat i thought

was just routineob+blood work. i went backto theoffice. in a couple days, thesb.phone rang and it was the doctorand he shared thatthey thoughtsb1it was multiple myeloma. and theoncologist reviewed the numberspb4on thescreen, turned to me atthe end, and said, "you have aqb8malignancy. it's called multiplemyeloma."multiple myeloma isnb;the second most common of thehematologic malignancies. so,ibit'sa blood born cancer, ifyou'd like. it's systemicqb meaning it touches all parts ofthe body, developsin the bonerbmarrow. that malignant cell hasthe capacity to go to differentibparts of thebody andproliferate and destroy where ittbends up. i knew what myeloma wasand i knew i didn'twant to havekbit. and i found myself thinkingthat if this disease wasqbsupposedly so rare, whycouldn'ti have won the lotto instead?nb#but,

you deal with the handthat's dealt you. butbecause iob'had worked in health care andbecause my particular interestqb*was disparities,i was aware ofmultiple myeloma and knew thatob/it disproportionately affectedafrican americans,but i alsojb3 knew that the literaturesuggested that it was an olderjb6person's disease. iwas49-years-old. the median age isrb:about 70-years-old at diagnosis.but there are patientswho arepbyounger who have this disease,and patients will present withqbback pain, fatigue,they'll befound to be anemic, and it's intbthe workup of why they're anemicthat the multiplemyeloma can bepbdiscovered. sometimes x-rayingthe skeleton where the pain isnbwill show someof the lyticholes in the bone from myeloma.nb so there's a variation in theway patientsmay present withob the disease. and it can

be achallenge in the diagnosis. butqb%we haveto be aware of it, andthat will help. i had a hole intb+my pelvis. i had two compressionfracturesin my lower spine, andob/then later four compressionfractures that were very ugly upeb3and down my spine, whichrequired a process calledlb6kyphoplasty, which they had togoin and repair them. andsb9during that i lost two inches ofheight which was pretty hardtopbhandle. when i found out that mybones weren't compromised, ilbthought, "oh, we gothere at agood time." and the doctorqbbasically gave us no hope. hesaid that my husband shouldtakepb me home, and when the discomfortreached a significant enoughiblevel that he would provide sometreatment for me. thelbliterature, then, wasn't verygoodeither. it wasn't veryjboptimistic and it

certainlydidn't offer any promise oflbhope.depending on age, thepatient who's newly diagnosedqband not previously been treatedwould be consideredfor a stemhb!cell transplant, maybe one maybetwo depending on thesc%circumstances. patients whoaren't eligible or areunsuitablelb,for a transplant maybebecauseof age or underlying otherob0illness besides the multiplemyeloma would be consideredforob3drug therapy. so i went to theoffice, got online, looked upjb8everything i couldfind onmultiple myeloma, and then ijb;referred myself to anotherdoctor for a second opinion.nbgoingthrough a transplant isdifferent for each person, sorbi've never tried to share withanybody.it's an experience thatgb if you're called on to gothrough, you go through itsbbecauseyou want to come out theother side. and it

was the bestobchance of survivorship thatihad at that point. when you gopbto see a physician for whateverails you, do not treathim asnbthe emperor of a mayan temple.they don't speak a differentnblanguage. you mustsay to them,"doc, i just don't get whatpbyou're talking about. talk to mein plain languagehere. whatpb!else should i be reading? and iknow you won't mind, and i domb&trust you,but i think i'm goingto call a couple of othernb)physicians and just see whatthey have to say." medicineiskb,not math. it's not 2 + 2 = 4.it's very subjective. eachtb/doctor or physician willlook ata particular case, and generallyhb5have a slight variation onwhat's the best treatment.fb7(music).that was my firstexposure to a successfulatherapy. &a(music). access healtha(music).\cwhile dr. dixie esseltine wasobserving landmark

positiveresults fromlbone patient in a clinicaltrial,another patient was alsoqbembarking on his own landmarkcancer journey. the name'sbond,nb"james bond. i was diagnosed withan incurable blood cancer,qb&multiple myeloma,and i was toldi would live at most 3 years.sb+that was 23 years ago. i've hadfour stem cell transplantsin 23ob0 years, and i think they're avaluable tool in the toolbox ofsb3dealing with multiplemyeloma. ihad the pleasure of meeting jimqb7and his wife, kathleen, whilethey were visitingcambridge fornb:a wellness checkup. kathleen andjim, we have to talk aboutnbsomething first,45 years ofmarriage. there's a love storyobthere. there is. and i want tostart by saying i amthe realpb james bond. you are. and i canprove that becausethis is thesbbeautiful bond girl of 45 years,kathleen.

love it. he says thatqbevery time and it works.for 45years, it's worked for you. itqbhas. so, tell me when did youstart to notice changes?well, itb noticed just before our youngestson went offto college that jimoblooked like he was beaten downand had kind of the weight ofib the worldon his shoulders. hejust seemed like he wasqb#shrinking a little. it's a goodthing he had a physicalcomingsb& up. i was required by my companyto have aphysical examination,sb*and during that examination theyfound i had too much protein inlb.my urine.so that's red flags.yeah. and one thing led tokb2another, and they finallydiagnosed thisodd-ball cancernb5that we had never heard ofcalled multiple myeloma. and thepb9x-raysshowed i had a lot ofbone damage, and the

sore ribs ijb thought i had were actuallybrokenribs. and i actuallynb asked the diagnosing doctor, isaid, "how long do you thinkpb i'lllive with this incurableblood cancer?" and he said, "atlb most, jim, if everything goeswell,you'll live at most 3pb years." so where do you go now?what sort of treatment do youlbtake on? well, it involved myfirst stem cell bone marrownb transplant, which was shortlyafterdiagnosis and it workednb fine. and i got a nice long5-plus year remission. which wepb!knew it'd come back and so ouragenda during that time was torb %try to plan what to dowhen itdid come back. we really lobbiedjb ) the doctor to do anothertransplant, andafter clearingsb - some hurdles, we did. it got meanother 3 years.and then we didmb 1some other things that

werepossible under the traditionalob 5drugs,and finally at the end of10 years, we were done withob :things that would work and mycancerwas out of control. youmb were at a point where you haveto do somethingdrasticallyob different? yes. that last stepwas somethingthat was rarelyjb done, and that was to getanother stem celltransplant,ib which was number 3, from mymatching sister,becky. myqb cancer, when i received them,was too high.they could not getnb the cancer level down. therewere no drugsavailable to getmb the cancer down. so, i wasgetting ready todie. my memoryob

is my doctor said, "jim, youneed to go toa hospice. you'repb done. there's nothing left foryou." and wewere stubborn andsb #insistent that we were going totry, and wewere going to try toqb &find an opening in the clinicaltrial thatwe had heard about.pb *we were lucky enough to get anout-of-towndoctor to admit usib -into his clinical trialproviding we wouldcome to hispb 1visit, live there for 9 months.the doctorhad said, "are youmb 4willing to relocate for 9months?" jim said yes. he packedmb7 everything he owned. i packedfor a long

weekend because ipb;didn't think he was going tomake it. i thought i'd be comingrbback with a body. so afteryouentered the clinical trials, howmbquickly did you start to seeresults? jim was layingtherejb barely able to sit up and wasbarely able to eat, and imbnoticed after a coupleoftreatments, all of a sudden he'smbup and anxious to go out andwalk. he wants to goout to aobrestaurant. i mean, suddenlyhe's vibrant and my husband wastbback. within 2weeks, i saw thatevidence. so when we came to thehbhospital and the study nursecame outto tell jim hispbresults, i could have told herwithout knowing those results.ob#his cancerlevel had dropped99%. oh my goodness. 99%? yeah,sb)it was quite remarkable and theywantedto do another test to belb,sure it was true,

and it wastrue. and within a matter ofgb/monthsi achieved completeremission, again with thenb3 understanding that this diseasestill has nocure yet. it'smb6going to come back. but reallyfor the last 13 years, thisob;disease has largelybeen undercontrol. and so i continue torblook for a clinical trial whenit's time for meto do somethingnbwhen it's time for me to dosomething to manage my disease.ob now that'snot to say any ofthis has been easy because it'sqbbeen very very hard. talk to usaboutwhat it's been like as apbcaregiver by his side the wholetime. well, initially, it washbterrifying.absolutelyterrifying. but i threw myselfmbinto controlling all of thepieces and parts thati could.pband if that meant i made surethat he ate well and i could dolbwhat i could doto help him bethe best possible patient,nb!that's

what i did. but also ithink it really helpedme andhb%empowered me to find outeverything i could about thepb)disease so that i couldask goodquestions and i took copiousob-notes. but i would try to findout what's out on thehorizonpb0because we know, even today,when this disease rears its uglyqb5head, we know there are thingsout on the horizon. and we knowqb8who we can talk to, and wherewecan go, what there is to findsb out because, as i said, we liketo think we'remanaging this andrb we're not letting it manage us.what are someof the things youqb sort of deal with? well, mentalstress is clearlythere. it islb hard. there have been somephysical side effectsthat areib

real, and i don't want tominimize them. iam a couplesb inches shorter than i was when istarted. myspine has collapsedlb from when the myeloma wasactive. my spineis curved. i'mpb twisted around. i've had a hipreplaced. i'mwearing contactspb because of graft versus hostdisease in myeyes. that withoutsb !these, i cannot see well enoughto drive acar. there's a lot oflb $day-to-day chronic things tomanage this diseasethat aresb 'part of my life right now. it'snot easy.i'm not trying to givenb ,the impression that this is aneasy ride.it's a hard ride.kb

/it's really, what are youwilling to do? andi've got ansb 3awful lot to live for. i've gotkathleen,i've got our sons, gotqb 7the grandchildren, great familysupportingus. and so we're inpb ;it. whatever i can do to keepgoing i willdo. i just want toqbthank you so much for your time.it's really, not only is it anbstoryof hope, determination,stubbornness, but it's also apblove story. so, thank you somuch forsharing that. oh, thanktbyou. thank you. i'm going to geta tissue now. no, no. thank you.pbdrythe eyes a bit. i can tellyou that sharing our story, itqbhelps us. it helps us a lot.mydisease is coming back. i know@bthat. but we'll be ready for itwhen it does.'a(music).access health.

(music).?b+the road to successfultreatmentshas been >b-a long one, and multiple myelomahas been anb0worthy opponent. well, i becameinvolvedmore formally withjb4multiple myeloma trials in theyear 2000. and the firstqb9multiplemyeloma patient in thattrial actually had a completetb response. so, she became diseasefreeunder the influence of thisjbnew drug that was beingdeveloped at the time. that wasabmyfirst exposure to asuccessful therapy. nowmb subsequently we did a largertrial in phase2 and that wasobwhere we got more definitiveproof of it, the safety and thejbeffectiveness inrelapsedmultiple myeloma patients. wedbneed more patients toparticipate in the clinicalpbtrials.we have just a smallpercentage who do, and there areqb"a number of advantages to doingso.multiple myeloma survivorspb&are now able

to live their livesbetter than ever beforewithob*advances in treatments. i'mreally pleased that we're at therb-point where multiple myelomahasbecome treatable. i still wantqb1to work towards a day that itbecomes curable and preventable.ob5so,there's a lot of informationand knowledge that we stillpb8need, and i think that if we allcontribute whatever time andpbtalents and resources wehavetowards that, that we'll get toqbthat goal. i realize if i werestarting out nowknowing what iob know now, i would start outlooking at multiple myeloma as asbmarathon, and iwould think wheni do in my treatment today, howpbis that going to impact me 2decades fromnow? caregivers arepbso important, and it's a drainon them as well. so, i had thetbcoreof my medical team and thenmy family, and

we've always beenkb!supportive of each other.theyreally became the supportmb$structure. they became the propthat kept me up. meredith,pb)especially,monitored all of mymeds that i had to take everyrb-day, gave me tough love when ithoughti was going to go out ofkb0the house and get on anairplane, and said, "no, no, no.sb2you'renot going to do that." ialways tell people who are beingqb5diagnosed with cancer, "looktoyour family. get an ombudsman.nb8if you don't have a doctor inthe family, find a friendwhoqb:can do the interpretation foryou." yeah, the lessons learned,nbthey're really for them.andit's daily exercise, no matterjbwhat stage you're at. it'sgetting second opinions whenpbthey make sense. it's entering aclinical trial when it makesobsense to you. it's having theworld'sgreatest caregiver andmbmedical team that

you canpossibly get around you. i thinkpbthatonce we get through theinitial shock, i would hope thatjbeach person who has myelomacommitsthemselves to doingkbsomething in terms of theresolution of this disease formbfuturegenerations. it's aformidable opponent, but i alsorb#feel that there's a formidablegroup of people out there -- nowlb'whether they're advocatesorphysicians or researchers ornb*pharmaceutical companies orwhatever they are -- focused ongb.thisdisease and making adifference in the lives ofnb1people. now the gains sometimesare small,though, and as aqb5 researcher, you see the smallgains as beinglarge compared tojb;what we could've done. but,again, i don't think we canobforget whenit's a patient,family member, those incrementalgb

benefits have to be a lotlarger. that's whatpeopleobdeserve and that's where i thinkwe are trying to strive forpbthose bigger gainsfor patients.some people ask me if it wasobworth it. i've been through alot. it hasn't beeneasy. it'smb been at times very difficult.and my answer is, "heck, yeskb$it's been worthit becausehaving time with my wife, themb'rest of the family, all thememories we have, allthe morenb*memories we're going to becreating, it's very worth while.lb.and it's just beenan amazingjourney." i thank everybodyob1that's been involved. at the endof the day, my canceris innb5remission, i'm feeling better,i'm now almost 3 years olderob8than i was when i was diagnosed.so, there are the aches andpb;pains that come with that.butit has given me a better focussbon life

about the things that ireally care about beginningwithlbmy family and sorting out thosepriorities that i get theqbgreatest reward from. so,it wasa hell of an ordeal. it's notnbentirely over. but it's beenvery instructive, and i'mgladrbthat i learned as much as i didand i'm going to spend a lot ofqbmy life sharing it.now we justhave to increase awareness andrbkeep supporting cancer researchno matter for whatdisease. andob#i think we're making advances,slower than we'd like in someib%areas, but there'sbeen somedramatic progress in thiszc. particular disease. and i justhope for moreand i'll work formore.a/(music).gband there you have it.what began as one of the mostqbdeadlyand untreatable cancers,garnered the attention of somepbof the most passionate cancerspecialistsin the world. thoselb same experts now have

a greaterhope for multiple myelomaobpatients, and even dare to saythey're closing in on a cure.jbfor more information, go to themmrf.org or visit us at aaccesshealth.tv.%awho you ridingfor?! a(music).