Pain

[Guest guest]

Dear ,

This is a crazy disease sometimes, but you are by no means crazy. Some

things come and go and some disappear never to resurface. Not being a scientist

I can offer no suggestions, as not all questions have a ready answer, but there

is usually someone who knows something. Just keep asking questions and

searching. When I go to ER, the doctors recognize my name and every chance they

get, they come and talk to me about CML. They commend me for learning as much

as I can. Many times they are working blind, because big Pharma does not talk

about their trial drugs. I've been more or less on trial drugs for over 11

years, and it is incumbent upon me, myself and I to try to keep up with them.

There is a lot you can learn by reading ASCO reports as well as ASH.

I know my local oncologists do not attend these conferences and I have

personally shamed them for not driving 60 miles to attend, even if they only had

1 patient with CML. So the ball always falls in our court to do our part and

share that information because sometimes we are all we have to go on.

For extreme pain, I know some take Oxycodone for bone pain. This is

something you need to discuss with your doctor and if he/she doesn't want to

stand by you, find one who will, even if you have to see an orthopedist or

rheumatologist. There are pain clinics all over the country and they give you

Kenalog injections, but they are not conservative enough as far as I am

concerned. They are much too quick to start pumping you up. I went to one pain

clinic that filled me up with so many injections I could not sleep for a week at

a time, just little cat naps while watching TV. You are so wired you walk the

floors. They also want to sedate you so they can make extra money. The last

one I had, I absolutely refused sedation and they actually tried to talk me into

it. I had lived through several before and I wasn't sedated, even by the same

doctor who now owns the pain clinic. The first two injections failed and they

kept giving me more appointments. They don't even bother to try and find the

root cause. I haven't been in years and my pain level remains the same. For the

most part, you can find your chiropractor can do as much for you. My

rheumatologist is the most conservative doctor I know when it comes to giving

you any shots, so I have relief for a short time until it wears off.

Reach out to others, , and they in turn will reciprocate. You will

always have someone you can turn to, we are all here for you and each other. If

everyone would talk about their own experiences, we would have a lot more

understanding about all the different facets of this disease. Always look out

for and get the best that is out there that is within your reach. I'm

sure you know that there are pilots who will fly you to your destination at no

charge. The American Cancer Society also has resources they can refer you to

for getting free or low cost rooms if you travel out of town. The hospital you

go to has social workers who can assist you, so help is out there, you just have

to look for it and above all, don't be too proud to ask for help. Love is free.

Peace and comfort to you ,

Lottie