's Pain

[Guest guest]

Dear ,

Something similiar happened to me for one day. I couldn't walk, my husband

had to push me around in a wheel chair. My oncologist was not on duty, so I saw

the hematologist. My poor husband pushed me back and forth several times from

the hospital atrium to the labs and in between I slept on a sofa in the waiting

room. I was there until the office closed and they never found out what the

trouble was, but it was hurting from the groin to my ankle. He said he had good

news/bad news. The good news is they didn't find anything and the bad news was

they didn't find anything.

When I saw your post, I said, " Oh my gosh, that sounds so like what I had. "

I know yours lasted longer and I don't want to minimize the reality of your

pain, it is real. Physical therapy is the last thing I want to do with that

kind of pain. I do hope they can give you something for pain, or if you are

that intolerant, you may want to search for another drug or trial. I

understand from the people in AMN107, they can only take 1/2 the dose, which is

400. They tried 800 and were intolerant and had all kinds of side effects,

including acne. There is something out there for you, just keep looking and

don't give up in your search.

When I was first diagnosed, I did my own sleuthing and here is something I

found and it has nothing to do with your pain, but what they are doing in search

of a cure. The title of the short article was " Understaning the Mysteries of

Life " .

" Leukemia has served as a model for the understanding and treatment of all

cancers. Much of the early work on AIDS were done by leukemia researachers. "

If you are wondering why, it's because leukemia cells are found in the

blood and bone marrow, cell structure and their behavior is studied under the

microscope. This is the era of immunology and molecular genetics. Leukemia

researachers continue to be at the forefront of cancer research. When this

article was written, Gleevec was only in someone's dreams - Dr. Druker at OSHU.

Have you noticed that many patents for new drugs are for leukemia? They are

making giant strides because leukemia is the easiest for them to understand. So

now they are at the forefront of all cancer research. Their revolutionary

techiniques are unraveling the mysteries of the life of a cell, thereby finding

the most basic questions about cancer and solving them for you and me.

Parts were taken from www.leukemia.org/docs/med_res_edu.html dated 8/1/96

and parts were my own words interjected. The site has changed to if you want to

explore there further: http://www.leukemia.org/hm_lls It now and features

news and podcasts.

Here is an excerpt from another leukemia support group:

http://www.cmlsupport.com/cmlgleevecsideeffectsguide.htm

The problem: Some experts believe that bone pain is the result of Gleevec

killing so many cancerous cells. Still, some patients have said it's so bad that

it even hurts to cry. Some say the pain is the worst in the thigh bones and shin

bones. Some report that bone pain is worse shortly after starting Gleevec but

then diminishes over time, as there are fewer cancer cells to kill off.

If Lynne A. is reading this, she can tell you more about bone pain and what

she has done about it. O. K., Lynne, it's your turn.

Blessings,

Lottie