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Last modified on
Tue Dec 31 2002 14:56:58 PST

Patient Do's


Overview

Facing a life threatening disease can be interesting. During the course of treatment I learned a good number of lessons which I failed to write down at the time (see Do number one).

As I remember these tips I will append them to the list below. I think any Hodgkin's patient would do well to consider these suggestions.



The Do's

  1. DO write things down. Many patients find that they develop something that we refer to as "chemo brain". If you don't write it down, you won't remember it.

  2. DO ask lots of questions. Find out as much as you can about Hodgkin's in general and your situation in particular. It's easy to feel helpless when you have a life threatening disease. But you are not helpless! Knowledge is power!!

  3. DO look at the date of anything you read about Hodgkin's. Treatments for Hodgkin's have made tremendous advances over the years. Thirty years ago or so if you got Hodgkin's, you died. Now Hodgkin's patients have high survival rates.

  4. DO get a diary type calender. Even if you don't develop chemo brain, there is a lot of stuff for a Hodgkin's patient to keep track of. A diary is the perfect place for

    • your many appointments - Include what you are having done as well as the date and time. This will be a helpful reference later.
    • questions for the oncologist - Write your answers when you get them.
    • your medications - By referring to my medication list I discovered that the oncologist had left off an important drug during one chemo session.
    • addresses and telephone numbers of ALL medical providers - You might want to tape business cards in your diary.
    • your key blood count results - Write them down each visit.
    • a million other things - Think I'm going to do all your work for you?

  5. DO make sure you are comfortable with your oncologist and his staff. You will be spending a lot of time with them.

  6. DO join the Hodgkin's Disease ListServ. This is a great source of information and support.

  7. DO get second opinions. Consider getting one from a Hodgkin's or lymphoma specialist at a major cancer center. If there is any change of radiation being a treatment option, you will want to get the opinions of both a medical oncologist and a radiation oncologist. It is best to have any second opinions before treatment begins. You may also want to have your biopsy material reviewed by a second pathologist who has lots of Hodgkin's expertise. Hodgkin's can be difficult to diagnose and it is relatively rare.

  8. DO get excisional biopsies. Hodgkin's tumors usually contain a relatively few number of actual cancerous cells. Therefore, needle biopsies are often inconclusive.

  9. DO take the best vitamin/mineral product available. Treatment is tough on the body and it needs all the help it can get. After a long search, I am convinced that I found that product. Also, if you are going to be treated with Adriamycin, you should be taking CoQ10.

    However, you should not take any supplement without informing your oncologist.

  10. DO take your loved one with you when you go to the oncologist. This will help them understand your disease and will keep you from having to play twenty questions. That loved one will also ask great questions, and you can "compare notes" later to see if each of you heard the same thing. Sometimes the patient isn't the most objective listener and may be too overwhelmed to question the doctor more thoroughly.

  11. DO get a port if you are going to have chemotherapy. It will save your veins and make your life much easier. Actually a port is only one of the options. See the Answers section Catheters and Ports

  12. DO take your loved one, VCR tapes, reading materials, munchies, and drinks to your chemo sessions. Chemo can take a long time. Also, you may want someone to drive you home.

  13. DO keep your eye on the goal (killing your Hodgkin's disease). Keeping all your appointments and taking 100% of your prescribed chemo drugs is the best way to achieve your goal. Kill your Hodgkin's so it doesn't kill you.

  14. DO keep close tabs on your medical billings and the insurance benefit determinations and payments. There will be problems and they are much easier to fix early before they take on a life of their own.

  15. DO get and keep copies of all test results (lab, gallium, PET, CT, MRI, biopsies, etc.). Read these results as well as the file at your oncologist's office. Ask questions about anything you don't understand.

  16. DO start your own web page. You may have a lot of people interested in your progress. A web page is a great way to update everyone at the same time. Mass E-mails would serve a similar purpose.

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