Re: [MOL] New member intro and question [13521] Medicine On Line

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Re: [MOL] New member intro and question

Dear Sandi:  Welcome and further down you will find sites that will help you get the inforamtion you need.  Yes, I have heard before of people getting weepy eyed during Checmo.  Is your husband a vet?  If so you could call the local veterns office and arrange for transportation for him, this would make it a bit easier for you.  I think they would let you ride along if you wanted too.  We are happy to have you in our group and hope that you will participate.  We have both caregivers and those cancering; so there will be more good folks responding to you.  Your friend, Lillian


       Here you will meet a wonderful caring group of individuals who are
       cancering or who are loved ones  and friends being  advocates for those cancering.
       Individuals in this group are not in the medical professional field.  Therefore,we do not
       endorse a treatment, drug or product.  Our people combined do have many year's of
       accumulated knowledge and expierence, who come from all walks in life and are able to
       lend tremendous assistance to help you walk through this journey.

       There are a few matters of importance to address.
       It is the general assumption of the group that one can use alternative treatments (with your
       doctors permission) in conjunction with traditional therapy.
       We feel that an individual who has had testing and is returning to the doctor should take
       someone with them as an extra set of ears.
       It must be remembered that this is a most stressful time for you.  We also agree that a
       second or even a third opinion is healthy.  One needs to shop for the right doctor for them;
       as each of us are so different not only in personality; but our bodies react differently.
       You should be seeking nothing but the best doctors and hospital, remember this is your life
       and you want to be in control.  The best way to be in control is to acquire all the information
       needed for your particular cancer; so that you and your doctor can descide the best
       treatment for you.
       We find stress is our worse enemy, it is so important to remove yourself from stressful
       situations and non positive thinkers.
       There are so many new drugs and treatments our there for most cancers that lend hope to
       Be prepared for you doctors visits with questions.  Should the doctor interrupt you while
       you are questioning explain that you have more questions.  Make sure the doctor speaks to
       you in lay terms and that he is positive also.
       Too often the doctor will give a gloomy statistical report, thus taking  hope away from the
       patient and we find so many people who far out live the guess of any doctor.  Last; but
       never least make sure that you eat healthy and that you keep your immune system built up.
       Again, we are here for you, we are a place of compassionate comfort, a place you can rant
       and rave knowing that we too have done that.  A place of shelter; whereas all of us know
       what you are going through.  Your friends of the MOL CANCER FORUM

                                       TRADITIONAL SITES

        National Cancer Institute
       Univ of Penn               
       Cancer Notes on the Net
       Medicine On Line       
       MD Anderson             
       Mem. Sloan-Kettering

       Alternative Medicine

             85% CancerAnswers - Alternative Treatments
             84% Cancer Information -Alternative Treatments
             84% Alternative Remedies for Cancer and other diseases.
             84% Re: Alternative cancer treatments [00299]
             83% 5. Internet Resources on Cancer


         BOOKS                                "50 Esential Things to Do When the Doctor
                                                         Says it is Cancer", Greg Anderson

                                    HOME HEALTH CARE

       National Association for Home Care
       c/o Consumer Guide
       P.O. Box 14241
       Washington, DC 20003
       (202)547-3540 FAX
       Web site:
       Trade association providing referrals to home or hospice care.

       The Oley Foundation
       214 Hun Memorial, A-23
       Albany Medical Center
       Albany, NY 12208-3478
       Web site:
       Support for home enteral and/or parental nutrition therapy.

       Olsten HealthCare
       175 Broadhollow Road
       Melville, NY 11747
       Web site:
       Provides home health care services including chemotherapy, nutrition and hydration
       therapies, pain management, physical therapy, and general nursing services.

       Visiting Nurse Association of America National Office
       3801 East Florida Avenue, Suite 900
       Denver, CO 80210
       Provides skilled nursing and assisted living services.

       Amherst H. Wilder Foundation
       919 Lafond Avenue
       St. Paul, MN 55104
       (612)642-4068 FAX
       Web site:
       Provides assisted living and nursing home care services for the elderly in the
       Minneapolis area.

       Childrens' Hospice
       2202 Mt. Vernon Ave., Suite 3C
       Alexandria, VA 22301
       (703)684-0226 FAX
       Web site:
       Provides information and referral services,counseling, support groups, education, and
       research aimed at improving hospice care for children.

       Choice in Dying
       1035 30th Street NW
       Washington, DC 20007
       (202)338-0242 FAX
       Web site:
       Advocacy organization for end-of-life rights;provides legal counseling and information on
       end-of-life decisions.

       National Association for Home Care
       c/o Consumer Guide
       P.O. Box 14241
       Washington, DC 20003
       (202)547-3540 FAX
       Web site:
       Trade association that provides referrals to local hospice organizations.

       Hospice Education Institute/Hospicelink
       190 Westbrook Road
       Essex, CT 06426
       (860)767-2746 FAX
       Provides information and referral services,education, advice and assistance regarding
       hospice and palliative care.

       National Hospice Organization
       1901 N. Moore Street, Suite 901
       Arlington, VA 22209
       (703)525-5762 FAX
       Web site:
       Provides information and referrals to local hospitals, patient advocacy and professional

       National Institute for Jewish Hospice
       8723 Alden Drive, Suite 219
       Los Angeles, CA 90048
       Provides free telephone counseling and referrals; trains professionals in the art of helping the
       Jewish terminally ill.
                                               RESOURCES/ LEGAL

       Americans with Disabilities Act
       U.S. Equal Employment Opportunity Commission
       Office of Legal Council
       1801 L Street NW
       Washington, DC 20507
       Provides information and legal assistance regarding discrimination due to illness or disability

       Family Medical leave Act
       U.S. Department of Labor
       Wage & Hour Division
       200 Constitution Avenue NW
       Washington, DC 20210
       Provides information on employment rights during medical leave due to illness

                           Support Services: Finance & Insurance

  American Association of Health Plans
  Membership Department
  129 20th Street NW, Suite 600
  Washington, DC 20036
  Web site:
  Insurance industry trade association that will provide information on insurance and health care

  Blue Cross and Blue Shield Association
  675 North St. Claire Street
  Chicago, IL 60601

  Department of Health and Human Services
  Inspector General Hotline
  Office of the Inspector General
  P.O. Box 23489
  Washington, DC 20026
  U.S. government hotline for complaints regarding Medicare or Medicaid; provides assistance with
  issues of entitlements, benefits, insurance, and community resources.

  Disabled American Veterans
  807 Main Avenue SW
  Washington, DC 20024
  (202)554-3581 FAX
  Web site:
  Provides assistance with health benefits for U.S. veterans.

  Hill-Burton Free Hospital Care
  5600 Fishers Lane, Room 7-47
  Rockville, MD 20857
  (800)683-0742 Hotline
  (301)594-5999 FAX
  Web site:
  U.S. government program that can arrange for cost-assisted care for disadvantaged individuals at
  certain medical facilities or hospitals.

  National Insurance Consumer Hotline
  1001 Pennsylvania Avenue, NW
  Washington, DC 20004
  Provides assistance in finding insurance coverage, information on insurance issues and a consumer
  complaint service.

                                              SUPPORT SERVICE TRAVEL


                                               Support Services: Hair Loss

  Look Good, Feel Better
  The American Cancer Society
  Teaches women who have undergone cancer treatment how to improve appearance through
  cosmetics, wigs, scarfs, etc.

  212 West Van Buren Street, 4th Floor
  Chicago, IL 60607
  (312)294-8598 FAX
  Web site:
  Provides donated wigs free of charge.

Mark & Sandi Newell wrote:

Hi Group,
This is my first post to this group so I hope I don't do anything wrong.
My 48 y/o husband has stage III colo-rectal cancer.  The cancer was found
in a lymph node. He had a colon resection in March and 5 weeks later began
on a Trial III phase of treatment.  The 1st round of chemo (5 FU) via bolus
shots put him in the hospital.  They think he may lack an enzyme to process
the 5 FU and this caused massive inflammation in his body - intense pain
and fever of 104.3. He had a 3-week recovery and had another round of bolus
shots that was decreased 20 % followed by another 3-week recovery.

He then began the 24-hour IV chemo and radiation for 6 weeks at the same
time.  At the 5 week mark he again developed major problems with the 5 FU
and the oncologist stopped everything as he said to continue could be
"lethal". But his radiologist was quite upset as he had had only 25
radiation treatments and said he must do at least 28. He has been unable to
work due to major problems with the intestines - pain, cramping, low grade
fever etc that lasts for many hours at a time. Has anyone else had this and
how long did it last and what did you do about it? I should mention that we
both really like his Dr's and have a good relationship with them.

I am sorry this is getting long, but his radiologist has scheduled him to
complete the radiation next week and he will do that. He then has 4 weeks
off and will again restart the bolus shots for 2 more rounds.
I have noticed that he gets very emotional at times and this seems to come
with the chemo.  I do not work as I have Lupus but am trying to be as
supportive as I possible can. He basically has a great outlook but the
treatment gets to him.

It is also exhausting for him (and me) with 2 Dr appt's weekly at the
hospital, 2 lab appt's and 5 radiology appt's at a different place with a
radiology Dr app't and a chemo refill app't. Whew. When he can work, I
drive him and then in the afternoon I pick him up and off we go to appt's.

Any comments or suggestions would be appreciated.

Thanks for letting me be a part of your group.


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