Leukemia Information and Resources

Getting Started After Your Diagnosis

Here are a few tips and pointers to know when you have just been diagnosed with a blood cancer (or any other cancer).   These are just a couple of ideas that I picked up while I was undergoing my treatment for leukemia.  If you have an idea that is not listed here, and you would like to have it posted to this list, please email me with your suggestion.  (NOTE: Not all suggestions will be posted.)   Thank You.

• Living With Leukemia    Great pamphlet adapted for the internet by Charles A. Koller, M.D of the Leukemia department at MD Andersen Cancer Center.
  
• Cancer Patient Guide   How to be a successful Patient
  
• Great tips for anyone visiting a cancer patient.

• Learn as much as you can about your disease.   The ultimate decision will be made by you (providing you are of legal age) and the best way to make a wise decision is to be well informed. A great source of information other than libraries and the internet is a Medical Research Library. Most are free to the public, some may ask for a small donation, and they may have a person who can help you research your disease.

   

• Choose a credentialed treatment facility.   Cancer and leukemia require specialized treatment and care. There are many good cancer hospitals and treatment facilites across the nation. I am NOT suggesting any non-NCI designated facility would be a bad option. However, due to the number of treatment facilities in the US, I have chosen to list NCI facilities. The National Cancer Institute designates certain hospitals as Comprehensive Cancer Centers. These facilities must meet stringent requirements to receive the coveted title. There are only about 40 or 50 NCI Comprehensive Cancer Centers now (2001) in the United States. I have listed most of these centers on my web site. Click here to find one closest to you.
  NCI Comprehensive Cancer Centers.   There are many good cancer treatment facilities that are not designated by the NCI. Since there are too many to list, I have decided to list only the NCI CCC's. However, I do not endorse any hospital or organization listed on my web site, nor do I receive any compensation from them.

   

• Contact a patient support organization.  The Leukemia and Lymphoma Society, and the American Cancer Society are good places to start when gathering information about your disease and certain support programs. The Leukemia and Lymphoma Society offer a program called First Connection. FC is made up of volunteers who have experienced what you are going through now, and are available to talk to on a one to one basis for usually one or two sessions. It is not an on-going counseling program, but it is very helpful for the new patient.

   

• Names and phone numbers.   Have all of your doctors' names and phone numbers ready. A good place to store them is right next to the phone. If you have space, a good idea is to store them in speed dial. When we are under stress, it is easy to forget the doctors office number.

   

• Medicines and doses.   Write down the names of all your medicines and the doses prescribed. Chances are you will be given many different medications. It is a good idea to keep a copy in your wallet and a copy near the phone. If you are not a doctor or pharmacist it will be nearly impossible to remember everything you are taking.

   

• Contact a Social Worker.   A Social Worker can help you make decisions concerning disability programs and state and federal insurance. They can also provide information about support programs available to lower income patients.

   

• Contact your utilities provider.   Sometimes a person who is undergoing chemotherapy or radiation will require more heating or cooling in their house. This can become quite costly, but some utilities companies offer discounts to disabled patients. Even if you are not disabled, you should give them a call to find out if you can qualify for a discount. There may also be discounts available through your telephone company and auto insurance.

   

• Avoid germs.   Be sure to wash your hands frequently throughout the day and ask visitors to wash their hands with warm water and soap when they enter your home. When possible, use paper towels instead of re-using a cloth towel. Carry some alcohol swabs with you when you travel to use on toilet seats. Cook food at a high temperature. Avoid crowded places like theatres, malls and air planes. Try to avoid bodily contact with other people. Shaking hands, hugging, and kissing, and other forms of contact should be avoided until your doctor says it is safe to resume bodily contact. People generally become sick more in the winter than in the summer. This is due not because of the cold, but because people spend more time indoors than outside, thus it becomes easier to spread germs.

   

• Mood Swings   A person who has been diagnosed with leukemia or cancer will experience depression, fear, despair, and mood swings. The caregivers should be aware of this and empathetic towards their patient. There are many reasons for this, and the family and friends should know that it is not a personal attack but a way for the patient to vent their frustration. Try to be patient and understanding. If it seems to become a problem, try to talk with the patient and let them know that you want to help them. They need to know that you are not a professional care giver and are doing your best. Lovingly ask them to bear with you as you try to help. If this doesn't work, it may be time to talk to the doctor about the problem. There are many anti depressants and anti anxiety medicines available.

   

• ***For Caregivers and Visitors***

   

• A diagnosis of cancer reaches into every corner of a patient's life, affecting not only the cancer patient, but everyone surrounding her/him. Everyone feels uncomfortable - friends don't know what to say or how to help and family relationships can unravel under the strain of an ominous diagnosis.
  One of the great tragedies of cancer is that it can drive a wedge between the patient, family and friends at a time when the patient needs them the most.

   

• BE THERE  Don't avoid your friend. Your presence is needed now more than ever before.

   

• TOUCH THE PATIENT  A hug or other physical gesture many times can say more than words.

   

• LET THE PATIENT TALK   Don't avoid the word "cancer". If your friend wants to talk about the illness, let the patient vent emotions freely.

   

• MAKE SPECIFIC OFFERS TO HELP  Ask if you can mow the grass, clean the house, do the shopping, fix dinner, take care of the children, or do any other task that needs to be done - and then follow through.

   

• HELP THE PATIENT'S FAMILY  Your friend's family is suffering, too. Ask family members if you can help care for the patient while they run errands or simply get away for a few hours.

   

• RECOGNIZE LIMITATIONS  Involve your friend in as many of your normal activities as possible, but remember that the patient may tire easily. Don't be offended if outings are cancelled or a visit is cut short because of pain, or fatigue.

   

• BE POSITIVE  No matter what the prognosis, every cancer patient needs laughter, hope, and talk of the future.

    University of Texas Health Science Center at Houston, Lifetime Health Letter, and Y-ME Hotline