Multiple Myeloma Awareness

Multiple Myeloma Awareness


Multiple Myeloma. A rare diseaseof blood and
bones, and despiteRBall of the medical advances andall the famous faces behind it,LBit still
remains one of thedeadliest cancers with one ofNB the lowest survival rates onrecord. I’m
here in Cambridge,HB Massachusetts to meet theexperts, the survivors,
theNB warriors determined to defeatthis double edged cancer. Hi,TBI’m Ereka Vetrini and welcome
toAccess Health, a Special Edition4Bwhere we go Behind The Mystery. A(music).9B,The
phone 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 likean
out-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 tosomebody
else. It couldn’tSBpossibly be happening to me. Theoncologist reviewed the numbersPBon
the 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 growSBold
with my husband. And then Ibegan immediately to think aboutRBmy family. I didn’t think
aboutdying 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 allergiesand
decided to call the doctor,MB3but at the same time I wasstarting to be extremely tired.PB7And
it was a deep dark tiredthat did not respond to sleep orSBrest. And I mentioned it to thedoctor
and thought that he wouldNB do his usual, just give me aprescription so
I could get mySBmedication and go off to the seaislands. In the summer of 2013,PBI developed
a very pesky backache. It just wouldn’t go away.PBThe orthopedist with whom I hadbeen
dealing with a long timeQBalways said, “Oh, come on Tom.It’s your lifestyle. You’re outRBthere
banging around.” You know,I had been riding bikes acrossJBSouth America. I was birdhunting
in Africa. I was on aQBlot of airplanes, but it didn’tdisappear. So, finally, at theSBMayo
Clinic, my internist becamevery suspicious and said, “BackRB”aches shouldn’t last that
long.”I was a health professional. IKB%travelled a lot, and I justthought that the tired was
aPB(result of that. And so he didwhat I thought was just routineOB+blood work. I went back
to theoffice. In a couple days, theSB.phone rang and it was the doctorand he shared that
they thoughtSB1it was Multiple Myeloma. And theoncologist reviewed the numbersPB4on the
screen, 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’s
a blood born cancer, ifyou’d like. It’s systemicQB meaning it touches all parts ofthe body, develops
in the boneRBmarrow. That malignant cell hasthe capacity to go to differentIBparts of the
body andproliferate and destroy where itTBends up. I knew what myeloma wasand I knew I didn’t
want to haveKBit. And I found myself thinkingthat if this disease wasQBsupposedly so rare, why
couldn’tI have won the lotto instead?NB#But, you deal with the handthat’s dealt you. But
because 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. I
was49-years-old. The median age isRB:about 70-years-old at diagnosis.But there are patients
who 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 Multiple
Myeloma can bePBdiscovered. Sometimes x-rayingthe skeleton where the pain isNBwill show some
of the lyticholes in the bone from myeloma.NB So there’s a variation in theway patients
may present withOB the disease. And it can be achallenge in the diagnosis. ButQB%we have
to be aware of it, andthat will help. I had a hole inTB+my pelvis. I had two compressionfractures
in my lower spine, andOB/then later four compressionfractures that were very ugly upEB3
and down my spine, whichrequired a process calledLB6kyphoplasty, which they had togo
in and repair them. AndSB9during that I lost two inches ofheight which was pretty hard
toPBhandle. When I found out that mybones weren’t compromised, ILBthought, “Oh, we got
here at agood time.” And the doctorQBbasically gave us no hope. Hesaid that my husband should
takePB me home, and when the discomfortreached a significant enoughIB
level that he would provide sometreatment for me. TheLBliterature, then, wasn’t verygood
either. 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 considered
for a stemHB!cell transplant, maybe one maybetwo depending on theSC%
circumstances. Patients whoaren’t eligible or areunsuitableLB,for a transplant maybe
becauseof age or underlying otherOB0illness besides the MultipleMyeloma would be considered
forOB3drug therapy. So I went to theoffice, got online, looked upJB8everything I could
find onMultiple Myeloma, and then IJB;referred myself to anotherdoctor for a second opinion.NBGoing
through 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 itSBbecause
you want to come out theother side. And it was the bestOBchance of survivorship that
Ihad at that point. When you goPBto see a physician for whateverails you, do not treat
him asNBthe emperor of a Mayan temple.They don’t speak a differentNBlanguage. You must
say to them,”Doc, I just don’t get whatPByou’re talking about. Talk to mein plain language
here. 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.” Medicine
isKB,not math. It’s not 2 + 2=4.It’s very subjective. EachTB/doctor or physician will
look 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).C
While Dr. Dixie Esseltine wasobserving landmark positiveresults fromLBone patient in a clinical
trial,another patient was alsoQBembarking on his own landmarkcancer journey. The name’s
Bond,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 transplants
in 23OB0 years, and I think they’re avaluable tool in the toolbox ofSB3dealing with Multiple
Myeloma. Ihad the pleasure of meeting JimQB7and his wife, Kathleen, whilethey were visiting
Cambridge 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 am
the realPB James Bond. You are. And I canprove that because
this 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 off
to college that JimOBlooked like he was beaten downand had kind of the weight ofIB the world
on his shoulders. Hejust seemed like he wasQB#shrinking a little. It’s a goodthing he had a physical
comingSB& up. I was required by my companyto have a
physical 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 this
odd-ball cancerNB5that we had never heard ofcalled Multiple Myeloma. And thePB9x-rays
showed I had a lot ofbone damage, and the sore ribs IJB thought I had were actuallybroken
ribs. And I actuallyNB asked the diagnosing doctor, Isaid, “How long do you thinkPB I’ll
live 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 youLB
take on? Well, it involved myfirst stem cell bone marrowNB transplant, which was shortlyafter
diagnosis 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 do
when itdid come back. We really lobbiedJB ) the doctor to do anothertransplant, and
after 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 mycancer
was out of control. YouMB were at a point where you haveto do something
drasticallyOB different? Yes. That last stepwas something
that was rarelyJB done, and that was to getanother stem cell
transplant,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 drugs
available to getMB the cancer down. So, I wasgetting ready to
die. My memoryOB is my doctor said, “Jim, youneed to go to
a Hospice. You’rePB done. There’s nothing left foryou.” And we
were stubborn andSB #insistent that we were going totry, and we
were going to try toQB &find an opening in the clinicaltrial that
we had heard about.PB *We were lucky enough to get anout-of-town
doctor to admit usIB -into his clinical trialproviding we would
come to hisPB 1visit, live there for 9 months.The doctor
had said, “Are youMB 4
willing to relocate for 9months?” Jim said yes. He packedMB
7 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 after
youentered the clinical trials, howMBquickly did you start to seeresults? Jim was laying
thereJB barely able to sit up and wasbarely able to eat, and IMBnoticed after a couple
oftreatments, all of a sudden he’sMBup and anxious to go out andwalk. He wants to go
out to aOBrestaurant. I mean, suddenlyhe’s vibrant and my husband wasTBback. Within 2
weeks, I saw thatevidence. So when we came to theHBhospital and the study nursecame out
to tell Jim hisPBresults, I could have told herwithout knowing those results.OB#His cancer
level had dropped99%. Oh my goodness. 99%? Yeah,SB)it was quite remarkable and theywanted
to do another test to beLB,sure it was true, and it wastrue. And within a matter ofGB/months
I achieved completeremission, again with theNB3 understanding that this diseasestill has no
cure yet. It’sMB6going to come back. But reallyfor the last 13 years, thisOB;disease has largely
been undercontrol. And so I continue toRBlook for a clinical trial whenit’s time for me
to do somethingNBwhen it’s time for me to dosomething to manage my disease.OB Now that’s
not to say any ofthis has been easy because it’sQBbeen very very hard. Talk to usabout
what 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 that
I could.PBAnd if that meant I made surethat he ate well and I could doLBwhat I could do
to help him bethe best possible patient,NB!that’s what I did. But also Ithink it really helped
me andHB%empowered me to find outeverything I could about thePB)disease so that I could
ask goodquestions and I took copiousOB-notes. But I would try to findout what’s out on the
horizonPB0because we know, even today,when this disease rears its uglyQB5
head, we know there are thingsout on the horizon. And we knowQB8who we can talk to, and where
wecan go, what there is to findSB out because, as I said, we liketo think we’re
managing this andRB we’re not letting it manage us.What are some
of the things youQB sort of deal with? Well, mentalstress is clearly
there. It isLB hard. There have been somephysical side effects
that areIB real, and I don’t want tominimize them. I
am a coupleSB inches shorter than I was when Istarted. My
spine has collapsedLB from when the myeloma wasactive. My spine
is curved. I’mPB twisted around. I’ve had a hipreplaced. I’m
wearing contactsPB because of graft versus hostdisease in my
eyes. That withoutSB !these, I cannot see well enoughto drive a
car. There’s a lot ofLB $day-to-day chronic things tomanage this disease
that 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? And
I’ve got anSB 3awful lot to live for. I’ve gotKathleen,
I’ve got our sons, gotQB 7the grandchildren, great familysupporting
us. And so we’re inPB ;it. Whatever I can do to keepgoing I will
do. I just want toQBthank you so much for your time.It’s really, not only is it aNBstory
of hope, determination,stubbornness, but it’s also aPBlove story. So, thank you somuch for
sharing that. Oh, thankTByou. Thank you. I’m going to geta tissue now. No, no. Thank you.PBDry
the eyes a bit. I can tellyou that sharing our story, itQBhelps us. It helps us a lot.
Mydisease is coming back. I [email protected] But we’ll be ready for itwhen it does.’A(music).
Access Health. (music).?B+The road to successfultreatments
has been>B-a long one, and Multiple Myelomahas been aNB0worthy opponent. Well, I becameinvolved
more formally withJB4Multiple Myeloma trials in theyear 2000. And the firstQB9Multiple
Myeloma patient in thattrial actually had a completeTB response. So, she became diseasefree
under the influence of thisJBnew drug that was beingdeveloped at the time. That wasABmy
first exposure to asuccessful therapy. NowMB subsequently we did a largertrial in phase
2 and that wasOBwhere we got more definitiveproof of it, the safety and theJBeffectiveness in
relapsedMultiple 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 before
withOB*advances in treatments. I’mreally pleased that we’re at theRB-point where Multiple Myeloma
hasbecome treatable. I still wantQB1to work towards a day that itbecomes curable and preventable.OB5So,
there’s a lot of informationand knowledge that we stillPB8
need, and I think that if we allcontribute whatever time andPBtalents and resources we
havetowards that, that we’ll get toQBthat goal. I realize if I werestarting out now
knowing what IOB know now, I would start outlooking at Multiple Myeloma as aSBmarathon, and I
would think whenI do in my treatment today, howPBis that going to impact me 2decades from
now? Caregivers arePBso important, and it’s a drainon them as well. So, I had theTBcore
of 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 Ithought
I was going to go out ofKB0the house and get on anairplane, and said, “No, no, no.SB2You’re
not going to do that.” Ialways tell people who are beingQB5diagnosed with cancer, “Look
toyour family. Get an ombudsman.NB8If you don’t have a doctor inthe family, find a friend
whoQB: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 whenPB
they make sense. It’s entering aclinical trial when it makesOBsense to you. It’s having theworld’s
greatest caregiver andMBmedical team that you canpossibly get around you. I thinkPBthat
once we get through theinitial shock, I would hope thatJBeach person who has myelomacommits
themselves to doingKBsomething in terms of theresolution of this disease forMBfuture
generations. It’s aformidable opponent, but I alsoRB#
feel that there’s a formidablegroup of people out there — nowLB’whether they’re advocates
orphysicians or researchers orNB*pharmaceutical companies orwhatever they are — focused onGB.this
disease and making adifference in the lives ofNB1people. Now the gains sometimesare small,
though, and as aQB5 researcher, you see the smallgains as being
large compared toJB;what we could’ve done. But,again, I don’t think we canOBforget when
it’s a patient,family member, those incrementalGB benefits have to be a lotlarger. That’s what
peopleOBdeserve and that’s where I thinkwe are trying to strive forPBthose bigger gains
for patients.Some people ask me if it wasOBworth it. I’ve been through alot. It hasn’t been
easy. It’sMB been at times very difficult.And my answer is, “Heck, yesKB$it’s been worth
it becausehaving time with my wife, theMB’rest of the family, all thememories we have, all
the moreNB*memories we’re going to becreating, it’s very worth while.LB.And it’s just been
an amazingjourney.” I thank everybodyOB1that’s been involved. At the endof the day, my cancer
is inNB5remission, I’m feeling better,I’m now almost 3 years olderOB8
than 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 beginning
withLBmy 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’m
gladRBthat 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 what
disease. AndOB#I think we’re making advances,slower than we’d like in someIB%areas, but there’s
been somedramatic progress in thisZC. particular disease. And I justhope for more
and I’ll work formore.A/(Music).GBAnd there you have it.What began as one of the mostQBdeadly
and untreatable cancers,garnered the attention of somePBof the most passionate cancerspecialists
in the world. ThoseLB same experts now have a greaterhope for Multiple MyelomaOB
patients, and even dare to saythey’re closing in on a cure.JB
For more information, go to theMMRF.org or visit us at AAccessHealth.TV.%AWho you riding
for?! A(Music).