Re: [MOL] Chemo & Lupus [02552] Medicine On Line


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Re: [MOL] Chemo & Lupus



Hi Mary, Joicy, Lillian, Nanc, Carla, Ken and all,
Thanks for the welcome.
Mary, Many people who are on low dose chemo for Lupus take it
indeffinately. I was on Methetrexate for about 6 months and was told that
there may be no end in sight. I do hope Trista has good care and follow-up.
 If her mother is getting good info on lupus thru a lupus line, that will
help too.

Yup, I am now the  caregiver.  Our marriage has come full circle.  My
husband took good care of me when I was very ill for many years and now it
is my turn to give back. Although it is very difficult, I do it with much
love in my heart. My husband had a colon resection (sigmoid) in March, and
the cancer had gone to the lymph node so it is stage lll.  He  started
chemo right after.  The first round of bolus shots put him in the hospital
in bad shape. Severe pain, temp 104.5 etc. His Onc DR thinks he lacks the
enzyme to metabolize 5FU and therefore they overdosed him by a whole lot.
He was seriously ill for a long time.  The 2nd round of chemo was 20% less
in dosage to accomodate for his problem.  zHe still was very sick. Next he
started 6 weeks of continuous chemo and radiation at the same time. After 5
weeks they had to discontinue the chemo because his Dr said it could be
"lethal" to continue.  He finished 28 days of radiation.  He has lost 52
pounds so far.  Fortunately he was a bit overwieght when he started.

He will start another round of bolus chemo of 5FU on Monday.  Our fingers
are crossed.  His Dr said that his body is doing everything stragne and
they are very cautious about what will happen next. He lost his hair when
he shouldn't have and then it f\grew back in the middle of chemo.  Strange.

But when I feel really bad, I go into the bathroom and sit on the floor and
cry.  He is 48 and our kids are grown and married so it is just the 2 of
us. I have learned so much more.  I thought I had learned a lot from having
Lupus, but I am amazed what new doors a serious illness opens.

Take care all and I pray for everyone's peace of mind and well being.
Sandi 


At 07:41 PM 8/26/98 -0400, you wrote:
>Dear Sandi,
>
>Thankyou so much for responding.  No I do not think you are butting in!
>How long can my neighbors daughter take this chemo?  Her name is Trista.
>I feel so sorry for her and her mother who is on top of all the latest
>info.  She goes on-line to the lupus board.  If I have any more
>questions or my neighbor does I will know who to ask.  Thankyou,
>
>So you are also a caregiver.  What type of treatments is your husband
>getting?  Did he have surgery?  When was he diagnosed?  Boy I'm just
>full of questions aren't I!  LOL.  
>
>Nice talking to you,
>Love, Mary
>> 
>> 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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