hussein has joined channel #MMyelomaChat
[naren] One of my questions is to tell us something about MM vaccination and who are the eligible candidates

[Judy] Hello everyone and welcome to this dialogue with Multiple Myeloma Specialist Dr. Mohamad Hussein of The Cleveland Clinic Foundation. I would also like to point out that Dr. Hussein has a very informative web site -- The Cleveland Clinic Multiple Myeloma Program.

[hussein] Type HEREi see a lot of people there, good morning every one

[Edyth] good morning

[Susan] Goodmorning

[hussein] hi judy

[Rick] good morning doctor

[Debbie] Hi and thanks

[naren] Good AM

[DREWandBETH] hi doctor

[Edyth] saw you in Houston at MM seminar Dr

[hussein] i just wanted to know if any one has any specific questions to address

[Al] al Greetings , grateful for your time

[Judy] At this time I want to extend a special welcome and thank you to Dr. Hussein for participating in this discussion.

[Edyth] I have a specific question

[PatandNoel] Morning, Doc. Pat & I are interested in results on your GMSCF trial

[DREWandBETH] I just started M2 protocol was unresponsive to VAD, wondered what other protocols we can try after this

[DREWandBETH] provided we are unrespinsive again, I'm praying fror the best!

[Al] also interested in the gmcsf protocol

[hussein] actualy we have some preliminary data, and it looks good, we have treated 17 patients in the second phase, and we have good responses in people who have failed several regimens

[Susan] I want to know what your history is with stem cell transplant and stable IgG on the rise, will it stable out or is remission over?

[Edyth] My question is -Never been on anything except AP-have responded well-started 4th time-M-spike went down then came back up to 1.3 what can I try next?

[hussein] if you have failed vad, i would consider the vad psc833 protocol

[Edyth] diagnosed 1'92

[DREWandBETH] thanks, we'll see where M2 puts us

[naren] Dr. Hussein, could you tell us vaccination, and are there any trials going on in US

[hussein] our history in stem cell transplant is not very good. we have transplanted 22 patients over the past couple of years, and not so good results

[DREWandBETH] have you done any allo transplants at Cleveland?

[Al] was the combination of VAD& ps833 in the same trial as VAD& verpermil?

[Susan] dx may 94/ AP x1 yr/ stable 1 yr/ stem cell 9/96 stable 17 months IgG going up 300 every 6 weeks what should we exspect?

[Susan] What do you mean not so good results?

[hussein] the vaccination work looks very good. Dr Ken Anderson at the dana farber is doing very interesting work with this and transplant

[hussein] slow down guys, i can not type that fast

[Debbie] Dr Hussein, ignore single letters -- have to type every 15 minutes or get shut out.

[DREWandBETH] slowin'

[naren] How far ahead is vaccination, and when would we about its results

[Rick] Doctor my mother was diagnosed through a check on her bone marrow, would a blood test show any sings of MM

[hussein] as far as the vad psc833, no it is not, and i think the new drug works

[Lee] Lee: I am scheduled to increase my aredia rate from 90 mg./4 weeks to 90mg./3 weeks.What precautions ,if anyare required with respect to calcium?

[hussein] as afr as allo transplant, no we have done oneany in myeloma. the plan was to use the intergroup trial, and this portion was closed because of toxicity

[hussein] nothing specific for the aredia, it should go well

[Debbie] Dr. Hussein, Do the possible benefits of more frequent Aredia warrant seeking it?

[Susan] You said you didn't have good results with stem cell what exactly are you referring to

[Al] my oncologist is very reluctant to start 3wk interval of aredia,,calcium levels are his concern

[hussein] i think it is worht using as i think if it does not help, so far it does not appear to hurt "aredia

[Rick] Is this Hereditary

[hussein] the results are as follows, all patients have failed at least two regimens including BMMT, we have 13 with results, 11/13 have responded, granted 9/11 are minor responses, however, ther performance is back to noirmal. the other two are major responses.

[hussein] no it is not heriditary, however first degree relatives, have a slightly higher chance of getting a lymphoproliferative disorder

[Rick] how can we be tested for this

[hussein] we do check auoto for amyloid, however other places do not. the BM could be negative in 50% of positive cases, and the best test is a SQ biopsy

[Susan] Is the rise of IgG and indicator that he is coming out of remission? Will he be a candidate for another stem cell? I have read ifyou have had a BMT it limits your opotions?

[DREWandBETH] Dr. Hussein, do you have any stats re response to M2 regimen, following refractory to VAD?

[Rick] what is a SQ biapsy?

[Al]other than lowereing the Mspike ..what treatment is used to alleviate amloidosis?

[hussein] bmt could be done twice however, if it did not work the first time why should it work agai!, however dr barlogie is doing double transplant to improove the response, and we are waiting on those results

[Rick] during kemo should there have been a heart monitor on her could that have detected an oncoming stroke

[Edyth] after AP fails what do you recommend next?

[Rick do you meet on Tuesdays to discuss this also if so when and where

[Judyb] http://www.oocities.org/HotSprings/1505/chatroom.html

[Judyb] I will post this transcript at my site, and will give the URL to the mm list.

[Susan1] i may have to hurt steve, i got up early on a rainy saturday and he's not here :-)

[Judyb] So everyone will have access to the transcript

[Susan] Thanks in advance!! And thanks for setting this up

[Rick] what is Amyloid?

[Rick] don't mean to be ignorant about this subject but it came so fast no answers were given to our family

[Rick] she was 74 3 weeks ago

[Rick] diagnosed on March 24

[Edyth] Wow

>> hussein has joined channel #MMyelomaChat

[Judyb] Welcome Back Dr. Hussein!!

[Susan1] aha, he has returned :-)

[hussein] Type HEREwin98 crashed, i am sorry

[Susan] we were afraid we scared you off!!!

[Judyb] oh 98!!!

[Debbie] That bleeding edge

[hussein] yes win 98 creshed

[Susan] Does the rise in IgG indicate the BMT is failing?
[Susan1] you and gates....lol

[Edyth] if you have win95 and microsoft internet exp 4.0 -juat as good as win 98-read that yesterday

[hussein] no i don't think that the rising of igg indicate the bmt is failing.about 30% of the patients it will go up, and does not mean any thing

[hussein] thanks for the tip

[Rick] could dialysis have helped her out to get her proteins in order

[Debbie] Dr, Hussein, What are the advantages/disadvantages to giving Aredia in 2 hours vs. 4 hours?

[Susan1] is it the m spike you're supposed to watch?

[Edyth] I'll try again-what do you recommend after AP fails

[naren] Dr. H. What is in the horizon for MM control/cure with good quality of life

[Edyth] Alkeran an prednisone

[Rick] my mom was on predisone for 10 years 5mg

[hussein] i think aredia could be given in two, and probably one hour. in patients with renal failure, it is probably wise to give over a log time"4h", as that does not cause any furhter compromise of the kidney function.

[DREWandBETH] thanks! I know that as MP - on it now

[Edyth] right

[hussein] we give the first dose over 4h, and if no reactions we give after that evover 90-120min

[Susan1] when should Aredia be given relative to VAD? it'll have to be either just before or just after the VAD

[DREWandBETH] great news, re aredia, will see what reaction I get to that news locally!

[hussein] guys if i missed any questions, please feel free to e-mail me the questions as well husseim@cesmtp.ccf.org

[Susan] 5 crushed vertibraes fused together, have heard that Aredia could cause complications due to that?

[hussein] i am new at this chat room stuff

[Judyb] You're doing GREAT!

[Rick] would a bone marrow transplant be given to her at age 74

[hussein] age does not seem to be a cut off for transplant any more, the question is who will benefit from it

[Rick] would it of

[Susan] Does your protocol give Aredia to stem cell transplant patients?

[Edyth] okay I'm going to e-mail you doctor

[hussein] if the bone is affected yes

[Susan1] should aredia be given at a certain time relative to a VAD infusion?

[Al] Dr. when you say BMT do you use the term for both BMT&PBSTC?

[Debbie] Dr. Hussein, At what point should we consider stopping Melphalan if we want to consider a harvest for a later transplant?

[hussein] no no specific time, we try to do at the same time to save a trip

[hussein] both bmt /PSCT

[Susan1] it is given just after a saline flush for my friend,

[Rick] why haven't I ever heard of MM was it under a different name?

[hussein] i would stop the mp after about 6 cycles, you do not want to have received more thatn 200mg total

[hussein] plasma cell dyscrasia is the name for all these disorders

[hussein] the new drug zolendronate should be in trial for myeloma soon

[Susan] What will that do?

[Edyth] If you don't plan a transplant can you just keep on taking Melphalan

[Susan1] that's supposed to be a stronger version of aredia?

[hussein] the advatages of the new bone drug is it is 1000x more potent than the aredia

[DREWandBETH] wow!

[Susan1] wow

[Rick] are all oncologist supposed to know about MM because my moms sure didn't

[Debbie] Dr. Hussein, Rick's mother died 3 weeks ago at the age of 74 from MM complications

[hussein] after 9-1

[hussein] i am sorry to hear that

[Judyb] There is a mm patient that has gotten compassionate use of zolendrate after aredia failed to continue helping with the high calcium levels.

[hussein] then just watch, and

[Edyth] when you stop the melphalan what then?

[hussein] just watch, and be active. most patients will have the disease actve with in 12-18 month then you retreat.

[Debbie] Dr. Hussein, Do the growth hormones that are given to stimulate stem cells also stimulate the myeloma cells?

[hussein] if it is iga i would consider interferone after the MP

[Susan1] and ig g?

[Al] are there any warning signs in the normal tests , to indicate a passage to leukemia?

[Edyth] thats what my doctor suggested and I am so afraid of interferon

[hussein] the g-csf stimulates myeloma, however we do not have evidence that in real life it makes a difference, my gut feling it might

[Rick] what is g-csf

[hussein] igg, it will prolong the plateau phase, but doesnot prolong servival

[lee] Why are so many doctors here and abroad so reluctant to prescribe Aredia or increase it once the patient has started?

[hussein] Granulocyte colony stimulating factor

[DREWandBETH] thanks, Dr, that's promising for us IgG types (I'm one)

[Rick] is plateau the same as stages

[Edyth] How long does one take interferon?

[hussein] i do not know, i think they are just not familiar with it, may be!!

[hussein] no plateau phase is the stable time after the response

[hussein] one takes the interferone for ever as long as things are stable, and you are tolerating well

[Al] Dr. can you ask patients to to send reports if they feel their IgG went up with use of GCSF (also noting dosage amount). Aanectdoal but a start.

[lee]When do you anticipate general availabilityof Zoledronate?

[Judyb] Yesterday CNN reported that the antibiotic minocycline hydrochloride is showing promise as a new treatment (possible cure?) for scleroderma, RA, and other autoimmune diseases. Dr. Durie is doing studies on treating MM patients with the antibiotic biaxin and corticosteroids, which are showing promising results for some patients. As both MM and scleroderma are diseases of the immune system, and both appear to be responding to antibiotic therapy, what do you think are the ramifications of all this as far as the cause, prevention, and cure of MM? Any other thoughts regarding treating MM with antibiotics?

[hussein] one takes the interferone for ever as long as things are stable, and you are tolerating well

[Al] Dr. can you ask patients to to send reports if they feel their IgG went up with use of GCSF (also noting dosage amount). Aanectdoal but a start.

[lee] When do you anticipate general availabilityof Zoledronate?

[hussein] there is couple of cases that havof myeloma that have been reported to get worse with G-CSF

[Susan1] that certainly sounds more body friendly than VAD

[Susan1] what's G-CSF?>

[Debbie] Granulocyte colony stimulating factor

[Susan1] oh, preBMT stuff?

[hussein] we have tried the biaxin on couple of patients, and it is too early to tell. i think it needs to be looked at carefully. what i am concerned about is a lot of people are using, and it is getting hard to know what ists role is

[Edyth] Doctor does one take steroids with interferon?

[HELENC] dr h--do you give the biaxin w/steroids?

[Debbie] Dr. Hussein, If growth factors pre BMT stimulate myeloma cells, is there an impact if the harvest is done much earlier than the transplant?

[Judyb] Bill is on biaxin/prednisone since Jan 98, this has resulted in one plasmacytoma on skull disappearing and another one on skull remaining the same.

[hussein] we have tested the gm-csf on 36+ patients, and e have not seen any disease progression, so we tend to recommend oits use rather than the g in myeloma

[Rick] halucinating and bad coughing dizziness and lack of oxygen are these classic symptoms?

[DREWandBETH] Dr., if patient refractory to VAD, what are odds of same to M2?

[hussein] judyb, can you keep me updated, part of this could be the steroids, but i am interested in hoew things will go

[Debbie] Dr. H, So gm-csf is different, and possible better than g-csf?

[Judyb] Yes, I will. He was on alternate day prednisone 50 mgs before and the plasmacytomas continued to grow.

[Edyth] will interferon alone bring m-spike down?

[Susan] You stated that you have not had good results with PBSCT literature originally said this could be the CURE fo MM?

[hussein] if you are refractory to vad while you are receiving the vad, there is probably a 40-60 % chance of being refractory to the m2. i would consider the addition of the psc833

[Judyb] He takes 500 mgs biaxin and 20 mgs prednisone alternate days now.

[hussein] i do not think that myeloma today is curable

[Susan] What is your history of remission years after the PBSCT?

[Al] Dr. I was told that if I had trouble with GCSF It would be more so with GMcsf. What is oits?

[hussein] there is no indication in the current, and updated trials that there is a cure, and the disappointing thing is that the randomized french double transplant is a neagtive study

[Debbie] Rick, if you have more questions at the end of this chat, you can also discuss your questions on the MM list serve-- you can subscribe at the myeloma.org website

[Rick] thanks

[hussein] the gm-csf has also, an immune stimulatory effect. it is the drug msot investigators use with the vaccine therapy

[hussein] Granulaocyte Macrophage Colony Stimoulating facto

[lee] any news on zoledronate?

[hussein] yes it should nbe in trials by the summer, and the latest by october

[Susan1] would the NCI website have info on that?

[Rick] what about shark cartilage

[hussein] i do not know, but probably the novartis web site will

[Susan1] they make both aredia and zolendronate?

[Edyth] If MP quits working what about switching to cytoxan? I've had MM 6+ years

[hussein] stay away from the shark stuff, i basicaly lost a patient because of it. it made his calcium shoot up, and he never recovered.

[Al] Dr. If you feel that Zoledronate is helpful in reduciong the role of IL6 , could we the MM public expidite its progess to the market place?

[hussein] cytoxan sound very reasonable, it should have a good chance specialy if it is 6 month away from the MP

[lee] thanks for your comment about shark cartilage. Some people are getting carried away with it.

[Debbie] Dr. Hussein, When do you recommend the use of additional tests such as MRIs, MIBIs, Pet scans, bone density measurements? Do these tests help to manage myeloma better?

DREWandBETH] cytoxan is new for me after VAD, maybe I'll see benefit too...

[DREWandBETH] my problem is mostly with lesions on fingers and tibias

[Susan1] steve's getting VAD but may need radiation on his back, how long does he have to be off VAD before getting it?S

[hussein] yes, i think we realy need to get together, and have a strong advocate group, and go to dc, get more funding for research, and expedite these drugs, i am willing to help

[DREWandBETH] great!

[Susan1] i have the FDA's phone number if that'll help

[Debbie] I'm willing to help too.

[Debbie]How do we start

[Susan1] an 800 #

[hussein] radiation and vad could be tricky, why is he getting radiation?

[Susan] when do we start?!!!!

[DREWandBETH] keep on doin' what we've been doin'!

[Al] Dr. Thank you for your desire to help.. An esteemed MM Medical community member would draw some attention.

[Susan1] not sure it'll happen but he has some bad lesions in his lumbar vertibrae, not sure which ones

[hussein] ok, we will have to get a group togehter may be this or next week, and chat about how and where to start.

[Susan] GREAT!

[Susan1] FDA- 1-800-532-4440

[Edyth] You're saying you should not start cytoxan unless you haven't had Melphalan in 6 mo?

[hussein] susan and susan1 we can start with judy, and whoever else!

[Susan] Took the wrods right out of my fingers!!!!

[Al] Dr. count me in Alice

[Debbie] Count me in

[Susan1] let me know, i have a good friend i want to keep alive as long as i can

[Rick] me too

[Edyth]me too

sounds good!

[hussein] no, i am saying it probably works better in patients who relapse more than 6 month after they failed another regimen, and yes it could be beneficial after vad

[Debbie] Dr. Hussein, When do you recommend the use of additional tests such as MRIs, MIBIs, Pet scans, bone density measurements? Do these tests help to manage myeloma better?

[Susan1] i think something posted to the mailing list will get a response

[DREWandBETH] why would radiation & vad be tricky? does the radiation reduce effectivenss of vad?

[Susan] Drew, Dennis had both when first dx and no problems......

[Susan1] he was told he'd have to be off VAD 2-3 months before receiving radiation or it would kill him

[hussein] debbie, i have a good freind and a patient who is killing me to do these tests, i really am not sure how it helps in management.

[Susan1] spot radiation, not TBI

[Edyth] Thats what I think also doctor-about the tests

[hussein] the reason is we do not have good drugs to tailor for the severity of the disease, so i do not do them "mibi...

[Debbie] Thanks, it is tricky, don't want to subject my mother to unnecessary procedures but don't want to overlook something crucial

[Edyth] I think we get carried away from our MM listserv about tests

[hussein] you know, i would switch him to cytoxan, and look carefully in to why he wants to radiate, i am willing to talk to the doctor

[DREWandBETH] Susan, I've had radiation & vad at the same time. radiation worked while ongoing but am refractory to the vad why he wants to radiate, i am willing to talk to the doctor

[Susan1] he was supposed to be here! grrrrr

[Susan1] why cytoxan over VAD?

[Debbie] Dr. Hussein, are there reasons to choose treatment with melphalan as first line therapy despite possible damage to stem cells?

[Judyb] Bill was the first patient to have a sestamibi done here in Tallahassee and it showed multiple areas of myeloma activity than later developed into plasmacytomas/lesions. These areas were not picked up with x-rays.

[Edyth] here's my situation-I am currently on MP -my spike went down but this month came back up-so I guess thats means its no longer working-can I just switch to cytoxan and pred next time? x-rays

[Edyth] Judy how did treatment change?

[DREWandBETH] I may need to travel to Tallahassee, for sestamibi eval!

[Rick] I lost a good friend my mom to this disease I will do everything I can to help out

[Debbie] Way to go Rick

[DREWandBETH] Good way to carry things on in her memory, Rick!

[Judyb] It showed us that even though his mm is still mostly localized that it was becoming more diffused, and that more aggressive treatment was needed.

[lee] I was scanned with sestamibi here at Mt. Sinai, Miami Beach. Nothing too definitive showed up.

[Al] how many are going to the march at D.C. in Oct.

[DREWandBETH] Million, Al!

[Rick] I would like to keep in contact with you people after this and like to give you my E-mail address

[DREWandBETH] just type it rick, I'll respond

[Susan1] sign up for the list

[Rick] DIEKGLENDA@PRODIGY.NET

>> hussein has joined channel #MMyelomaChat

[Rick] money for research where does it go to

[Al] very beneficial, thank you for the opportunity.

[hussein] Type HEREsorry, crshed again, this is the first time it has done this!!!

[hussein] let me finicsh the cytoxan

[hussein] cytoxan does not suppress the marrow as much as the vad, also, the Adriamycin makes radistion less tolerable

[Susan1] i know the VAD has tons of side effects, is cytoxan as effective?

[Edyth] If one is currently on MP can he just switch to cytoxan?

[Susan] Thnakyou Dr H for all your help and for giving your time. Hope to see you again , Susan

[Susan1] nice to meet you......other susan

[hussein] we are testing a new combination with radiation, and so far working very well.

[Rick] thankyou doctor a lot of the terms I do not understand but have them written down to look up

[Debbie] Dr. Hussein, are there reasons to choose treatment with melphalan despite possible damage to stem cells?

[hussein] i am sorry, let me know what to elaborate on

[HELENC] dr h--i've been on cytoxin for quite awhile--is there a time limit, my onc doesn't want to stop it until i no longer respond but i get very sick..

[hussein] yes judy this is very helpful for me to understand how people else where are thinking

[Rick] how do I have a SQ Biopsy taken

[DREWandBETH] if there's any benefit to my location, I'm close to cleveland!

[Judyb] That is good Dr. Hussein, and I thought we were just the ones learning.

[Edyth] while you were gone we expressed our feelings about MM-it sucks

[Susan1] NY here

[Rick] right on

[Judyb] I want to thank you so much for doing this Dr. Hussein!!

[hussein] with cytoxan we are not as strict because, it does not damage the bone marrow as much. also, it depends on what type of protein

[hussein] you are welcomed

[Rick] should I have brought my mom to the Cleveland Clinic instead of the local hospital

[hussein] i agree it is a tough disease, but very special people

[DREWandBETH] what protein is cytoxan best with?

[HELENC] I have IgG--take 1600 every three weeks

[Edyth] you mean only special people get it?

[hussein] i think a place specialized is better, and can certainly work with the local docs

[DREWandBETH] must be, edyth!

[Debbie] Dr. Hussein, are there reasons to choose treatment with melphalan despite possible damage to stem cells?

[hussein] igm, usualy rquires longer treatments

[Rick] well my mom was special so I guess special people do get this

[Edyth] how is interferon usually given?

[hussein] no, there is no specific reason for the use of the melphelan. in canada, they use cytoxan upfront, and i think they are right

[hussein] under the skin

[Debbie] Is one better tolerated than the other?

[hussein] no they are all the same

[Debbie] M vs C I mean

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