Re: [MOL] Mary - Lupus/Sandi [02431] Medicine On Line


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Re: [MOL] Mary - Lupus/Sandi



Thanks for your post.. I have a good friend with Lupus and this really helps
me to understand more...  Welcome to the forum!!  Carla
-----Original Message-----
From: Mark & Sandi Newell <mlnewell@mailbag.com>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Date: Wednesday, August 26, 1998 11:42 AM
Subject: Re: [MOL] Mary - Lupus


>Hi Mary,
>I know this wasn't written to me but I have had lupus for 16 years and have
>been on steroids (prednisone) the enitre time.  I have also been on chemo.
>I have been monitoring this list because I am the caregiver for my husband
>who has stage 111 colo/rectal cancer. Hope you don't mind me "butting" in.
>I lead a lupus support group in my area and would be happy to give you or
>your neighbor any current info. There is a lot of old info out there and
>causes a lot of worry.
>
>Lupus is a chronic autoimmune disease which causes inflamation in peoples
>major organs, joints, skin, blood etc. For those who have major organ
>involvement which can be life threatening, steroids and chemo are used to
>stop the immune system from attacking itself and trying to kill normal
>cells and organs.
>Prednisone in higher doses does indeed change the way you look as it causes
>a puffy face and neck and causes weight increase. People who have serious
>enough lupus to be on steroids and chemo should be seeing a rheumatologist
>to monitor their condition. Even though no one wants to be on these potent
>drugs, they are indeed life saving.  In 1950, lupus was considered a fatal
>disease, but with prednisone and chemo, many who would have died are now
>living and functioning.
>
>Chemo is not given at the doses that a cancer pateint gets.  Methetrexate,
>Immuran and Cytoxin, etc. are given in much smaller dosages. This is very
>common in serious cases. I would hope that your little neighbor is in good
>hands and is on these drugs because they are keeping her alive. Children
>can have more serious kidney and organ involvement.
>
>When your little neighbor's condition improves, hopefully she can be taken
>off the pred and chemo and placed on anti-inflamitories and other less
>damaging meds. This has not been the case with me, but many, many are.
>
>Lupus is very painful as inflamation seems to be always there.  Most who
>have lupus can get by without continuous pred and chemo and they are very
>fortunate.  But for those of us who can't, as much as we hate these drugs,
>they are working miracles every day as I can walk and move and breathe.
>I hope she improves soon.
>Please feel free to write me for any info.
>Sandi
>mlnewell@mailbag,com
>
>At 07:49 PM 8/25/98 -0400, you wrote:
>>Dear Nancy,
>>
>>I seem to recall you saying you had lupus.  My good friends daughter
>>who is only 10 years old has systemic lupus.  My mother-in-law has
>>lupus also but not systemic.  The ten year old is taking chemotherapy
>>treatments of cytoxin.  Have you ever heard of this?  Poor little
>>thing is a twin also and the prednisone they have had her on in the
>>past has completely changed the way she looks.  She has so many
>>problems from this lupus.  How long have you had it?  Any info would
>>be appreciated.
>>
>>I would also like to order two shirts from you for Angelo and I.
>>Should I just mail you a check?  How much are they?  I need a
>>Medium and  Large.
>>
>>Thanks,
>>Love,Mary
>>>
>>> Mary Ann,
>>> It will be so neat for all of you to wear the shirts on our special MOL
>day, I
>>> wished every one would wear one also in honor of all our MOL's who lost
>their
>>> battle to cancer, and to the caregivers that helped them on their
>journey.  It
>>> is so hard to lose a MOL, all of you are so neat.  To me it is an honor
>to be
>>> a MOL, I really love my MOL family.  John and Mary Ann, I was so happy
>to talk
>>> to you both tonight, you truly are neat people.  God bless all the MOL's
>>> Nanc
>>>
>>> In a message dated 8/24/98 11:23:45 PM Eastern Daylight Time,
>>> monty48@erinet.com writes:
>>>
>>> << Nancy, you are tooooooo sweet for words!!!!!!  I was so surprised at
>your
>>>  >phone call tonight.  How sweet of you to call and get my husband's
shirt
>>>  >order.    THANKS again!!    Check will be in the mail tomorrow.
Mary
>>>  >Ann
>>>   >>
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