[DREWandBETH] hopefully I'll have great results on Cytoxan!

[DREWandBETH] and I'll let all Y'all know!

[Debbie] Does Cytoxan have less of a damaging effect on the stem cells?

[hussein] i think they are about the same upfront, but cytoxan is better after meny treatments

[Edyth] I sound like a tape recorder-bear with me If one is currently on Melphalan can he switch to cytoxan

[Susan1] and cytoxan's better than VAD?

[hussein] yes, it could be switched.

[Edyth] Thanks

[Rick] I know that doctors like to stick together but I have a hard time because they would not give me any answers which makes me think they did not know what to do

[hussein] i think all chemo regimens are the same as far as results.

[Debbie] Is there any good reason to consider stem cell harvest for my otherwise very healty 76 yr old mother? Like if BMT results become more conculsively positive in the future?

[Edyth] Thats what Tepperman said the other night

[hussein] i think you are right, when we do not know what to do, which is more often than not, we do exactly that

[Edyth] about all chemo regimen being equal

[Susan1] vincristins's nasty stuff

[hussein] it is reasonable to store the bm, if you find some on e to pay for it

[Debbie] Rick, my father died after heart bypass surgery -- one group of docs didn't want to operate on him so he found another who would. Maybe the first group was right after all

[DREWandBETH] amen to that Susan, a day to get back on my feet every time i start it

[Debbie] But sometimes you can just make your best guess

[Susan1] only one day? wow, steve's got no energy for a week after

[Rick] I guess your right, my mind has been spinning because this came and took her so fast

[hussein] yes it is educated guesses in a sence

[Edyth] I've ruined my chances for stem cells-but I never thought I'd have a transplant

[Debbie] Has the harvesting procedure improved since the book Going for the Cure was written?

[DREWandBETH] I pour my energy into my computer stuff - sitting and typing I can handle

[Susan1]along with blurred vision, peripheral neuropathy, lost of taste

[hussein] all chemo are equal as far as response, and not toxicity, i just wanted to make this clear

[Rick] Doctor would I be able to give bone marrow to someone who has this i am 44 yrs

[Edyth] I understand

[hussein] some improovements, yes

[Judyb] Dr. Hussein could you explain the relationship between plasmacytomas and lytic lessions in regards to multiple myeloma.

[hussein] if you are a match, but the allo trasnplant has not been popular in myeloma because of toxicity "Rick"

[Edyth] Sometimes we just take a chance-what gives the best quality of life

[Debbie] Yes that would be helpful

[Debbie] Rick allo means getting the bone marrow from someone else; so far, frequently toxic to the MM patient

[DREWandBETH] Rick, Drew is looking at allo bmt 7/98 at Univ of Iowa. they have had positive results with it

[Susan1] graft vs host disease

[hussein] the plasmacytoma is a collection of the cells. the kytic lesions is basicaly a hole put in the bone by the myeloma calls thru stimulating the bone eating cells the osteoclasts

[Rick] i feel that I have to do something, I do not want to see any more people suffer from this

[Al] Dr. know a very young leukemia patient(not sure what type) who has done a matched aaaloo (her 15 yr. old sister) . What about the use of T-cell depletion concept?

[hussein] rick, i agree, all of us are trying to do something, but we will have to do together

[Debbie] Rick, get involved with the International Myeloma Foundation. They're doing great stuff on many fronts.

[Judyb] With MM though all lytic lesions have plasmacytomas, right?

[DREWandBETH] Univ of IA does the T-cell depletion, which they believe has helped the positive response

[Rick] Stupid Question here Doc. How do people get MM [hussein] in cleveland we have a 320 myeloma support group, and we are working on funds for research for us localy, these monys are very hard to come by

[Edyth] Rick Sam Walton died from MM complications-if anyone could afford to do something he could

[Susan1] wow

[hussein] the upper part of ohio, is probably the highest in the country. we think it is because of the chemicals in agriculture, and heavy industry. also, radiation

[Debbie] Rick, the cause is not known but one suspect is exposure to toxic substances

[Rick] I'm from Ohio

[Al] Believe he supported the growth of U. Ark Medical center for help and research of MM

[Edyth] right

[Edyth] But it didn't save his life

[Rick] along the river where a lot of steel mills throw chemical into our drinking water any correlation

[hussein] speaking of sam walton, would any one be interested in helping me approach them for funds?

[Rick] just say how doctor

[hussein] no he did not support much at AR

[Edyth] I thought he brought Barlogie to ark

[hussein] well we could may be draft a letter, and then follow up by a callor a visit!

[Debbie] Yes, I'm willing to help if someone has ideas as to how to do it. Not something I've done before

[Edyth] You'd think they would certainly be willing

[DREWandBETH] we're willing to help approach Walton's legacy

[hussein] yes, but did not give much

[Edyth] There was never much publicity about what he had

[Al] Dr. Huessin.. Do believe that our area is high in MM .. A great deal of toxic waste and three seperate cluster of the same rare form of childhood leukemia. I'll try to get you stats.

[hussein] judy, do you think you and i can get something started, and get it organized?

[Debbie] Dr. Hussein, how can we find out if there are vitamins/minerals (vite D, calcium, etc) that would be helpful in MM management? Is there someplace that studies this scientifically?

[Edyth] His fanily are still among the "richest" in America

[Susan1] long island just has amzingly high rates of breast cancer

[DREWandBETH] Drew has spent 21 yrs working for 1 of the major agricultural companies is the world, but mostly desk work

[Judyb] We could try, plus get some help from people who are really good at something like that.

[Rick] maybe testify at the state house to see if they could fund this disease

[Edyth] Barlogie must personally know the family

[hussein] i have a good team here in ohio, we just met couple of weeks ago, and wwe are meeitng again

[Debbie] Should we organize a multi-group chat?

[Judyb] I would love to try to help.

[Rick] it couldn't hurt

[hussein] about the vitamoins, i would not use the vitd, and i would be carefull with the calcuim. no scientific studies unfortunately

[Al] Has anyone read the book "A Civil Action "by Johathan Harr?

[Susan1] nope

[Debbie] No, never read it

[hussein] no

[Rick] people I will help in any way I can my heart and tears go out for each and every

[DREWandBETH] if we can involve another facility(ie Uof IA) wouldn't that strengthen our troops

[Susan1] vincristins's nasty stuff

[hussein] it is reasonable to store the bm, if you find some on e to pay for it

[Debbie] Rick, my father died after heart bypass surgery -- one group of docs didn't want to operate on him so he found another who would. Maybe the first group was right after all

[DREWandBETH] amen to that Susan, a day to get back on my feet every time i start it

[Debbie] But sometimes you can just make your best guess

[Susan1] only one day? wow, steve's got no energy for a week after

[Rick] I guess your right, my mind has been spinning because this came andtook her so fast

[hussein] yes it is educated guesses in a sence

[Edyth] Dr Hussein I heard you in Houston and from today you seem to be "right On" and sensible about this disease

[hussein] alright guys, should we call this a day, i certaily enjoyed theinteraction, and it has made my week "i had one of my worst weeks in my life, and this brightened it up"

[Debbie] Al would the book help to educate us about this?

[Susan1] maybe someone at IMF can help, esp grabbing walton's heirs

[Edyth] these chats always brighten a day

[Judyb] Applause, THANK YOU!!!

[Rick] do you have an E mail address that I may have

[DREWandBETH] thanks for your being here too, brightened our week, too!

[Debbie] Thanks doc. This has been very helpful

[Judyb] Hearing us clapping?

[hussein] yes husseim@cesmtp.ccf.org

[DREWandBETH] yay!!!!

[HELENC] thank you dr husein& judyb!!!

[Susan1] thank you for coming doctor

[Judyb] I hope you will do this again some time and thank you so very much!! It has been very helpful!

[DREWandBETH] vvvvvvvvvvvvvv <- applause, hand claps!

[hussein] thanks guys, i really appreciate your interest an time.

[Al] Our very deep personal gratuide to you as a physician and a person.

[Rick] thankyou very much

[hussein]you are more than welcomed

[hussein] good bye

>> hussein has left channel #MMyelomaChat

This page hosted by Get your own Free Home Page