Re: CML lectionary

[Guest guest]

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> Dear ,

> Mark posted an excellent description of the procedures and acrynoms we all

use pertaining to CML. I just posted this week that I was CHR, that is probably

where you picked that term up. That is complete hemotological remission, the

first rung on the ladder. That is where I have remained for nearly 13 years, so

you see, it is not necessary to be PCRU for longevity.

>

> In time, you will learn what these terms are and what questions you should

be asking your doctor. Don't be shy about asking questions, it's your life you

are dealing with and it's your right to know. Many of us have changed doctors

if we felt we were not getting satisfaction from our oncologist. Try to see a

CML specialist if you possibly can; they are so much more informed about the

latest treatments and clinical trials and have fewer patients with CML.

>

> Many doctors use Hydrea to assist the Gleevec in getting your white counts

down, but some patients have a wbc of 10 and above and for them it is normal.

Yes, , it is true that many of us have experience cramping in our limbs and

there are different ways to deal with it. My neurologist prescribed Skelaxin,

which I use sparingly, but lately I have not felt the need to take them. For

many, they go away on their own and for others it continues to be a problem.

Whatever you are experiencing, it is entirely probable that someone else had had

to deal with it and offer you their own way of handling it. Be careful of what

you are putting in your body. You can go to www.Drugs.com where you can go to

check on drug interactions.

>

> Remember that herbs are also medicine and can interact with prescription

drugs; for instance grapefruit is not to be taken with most tyrosine kinase

inhibitors, of which Gleevec belongs to that family. I was also told to add

starfruit to the lists of things to avoid. Herbs are not approved by the FDA,

so the manufacturers are not usually up to snuff about how harmful they can be

to a patient on certain medications; many should never be mixed.

>

> Many of us do suffer from exhaustion, but some of our members have a regular

exercise regimen to keep in tip top condition, so you might want to go to a gym

that has personal trainers to help you get over some of your exhaustion. Be

sure to eat healthy. I think most of us already know what foods are not good

for us, but old habits are hard to break.

>

> There are some doctors on the internet who do advocate the use of natural

foods and vitamins and minerals; you may want to check them out or even consult

with them if you want to use complimentary medicine, but that doesn't mean

stopping your traditional medicine. Some patients also complain of nausea and

bloating and swelling. Some of us will offer you suggestions that have worked

for us. Side effects can usually be managed and sometimes disappear altogether.

On the other hand, some cannot tolerate Gleevec and have to switch to other

drugs. I think you will find the members here are very helpful and comforting.

All you have to do is ask and someone will be available to answer your question.

> All the best,

> Lottie

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