Re: effects of radiation treatments

[Guest guest]

Tammy,

Did her doctors even think to look at what could make her CMT worse?

I don't like that they just pushed her CMT aside. Can she see another team of

doctors? CMT is the number 1 inherited neuropathy in NC and across the world.

Putting that aside it is a doctors job to make any medical problems a patient

has HIS common knowledge while he is treating her.

[Guest guest]

Hello,

My aunt has asked me to try for more information. Apparently the first steps of

her treatment for the cervical cancer is radiation. She will begin treatments on

Thursday. Does anyone know how the radiation will or may affect the CMT? Are

there any pain meds that she should avoid? She had been prescribed Serequil and

wasn't able to continue with that due to the pain in her legs that it caused.

Once she discontinued the meds (Serequil), the pain in her legs ceased.

This is a very difficult situation for all of us.

Also, she has been told that the CMT is not real popular in NC. The Dr's in this

part of the US just don't know much about it. They have actually advised her to

cancel all of her Dr's appointments for treatment of the CMT because they are

now her cancer Dr's and she will be treated as a cancer patient from this point

out. They say they will provide her with her meds. That doesn't seem right to

me. We are looking for any advice / guidance on the subject that we can get

before she gets started in her cancer treatments. Please - anybody?????

Tammy

[Guest guest]

Tammy,

I can't help out with the effects of radiation treatment, but I'd

advise Real caution with doctors who are choosing to 'ingore' her

CMT. I understand her cancer treatment is important, but so is

helping her CMT.

Are you anywhere near Duke? The Peripheral Neuropathy Clinic at Duke

is a member clinic of American Neuropathy Association and evaluates

patients with complicated peripheral nerve disorders. (This includes CMT)

Perhaps you and your Aunt may wish to add your own neurologist to her healthcare

team. I think Dr. Vance is there - he knows CMT and is an expert in the field.

Contact Numbers:

919 681-3386

Fax 919 660-3853

http://neurology.mc.duke.edu/Patient_Information.14.0.html

Remember something, the patient is in control, not the doctors.

Ideally, there would be an equality in the relationship team. Do not

let doctors 'take over' or 'take charge'. Weigh the pros and cons of

all treatments and therapies, cancer and CMT included. Take your

time with decision making. Do not let doctors 'rush' you. Are you

familiar with the Patient's Bill of Rights?

Patients' Bill of Rights

I. Information Disclosure

You have the right to receive accurate and easily understood

information about your health plan, health care professionals, and

health care facilities. If you speak another language, have a

physical or mental disability, or just don't understand something,

assistance will be provided so you can make informed health care

decisions.

II. Choice of Providers and Plans

You have the right to a choice of health care providers that is

sufficient to provide you with access to appropriate high-quality

health care.

III. Access to Emergency Services

If you have sever pain, an injury, or sudden illness that convinces

you that your health is in serious jeopardy, you have the right to

receive screening and stabilization emergency services whenever and

wherever needed, without prior authorization or financial penalty.

IV. Participation in Treatment Decisions

You have the right to know all your treatment options and to

participate in decisions about your care. Parents, guardians, family

members, or other individuals that you designate can represent you

if you cannot make your own decisions.

V. Respect and Nondiscrimination

You have a right to considerate, respectful and nondiscriminatory

care from your doctors, health plan representatives, and other

health care providers.

VI. Confidentiality of Health Information

You have the right to talk in confidence with health care providers

and to have your health care information protected. You also have

the right to review and copy your own medical record and request

that your physician amend your record if it is not accurate,

relevant, or complete.

VII. Complaints and Appeals

You have the right to a fair, fast, and objective review of any

compliant you have against your health plan, doctors, hospitals or

other health care personnel. This includes complaints about waiting

times, operating hours, the conduct of health care personnel, and

the adequacy of health care facilities.

More at this link http://www.consumer.gov/qualityhealth/rights.htm

Our group/list does not accept Fwds, but I hope I have given you

some helpful information. Go as slow as you need to in all of this.

~ Gretchen

[Guest guest]

Gretchen,

The information is very helpful. I am not real sure about her financial

situation. We will give them a call to see how it goes. This site is really a

god send. I wish we would have found you a long time ago. Thank you so much!!

Tammy

[Guest guest]

Tammy,

Another good neurologist at Duke is Dr. Wayne Massey...he wasn't difficult to

get an appointment with.

Ohio Carl

[Guest guest]

Tammy,

Tell your aunt not to let her doctors ignore her CMT. My uncle's doctor's didn't

know (because he didn't know) he had CMT and treated him as a regular cancer

patient which left him completely bedridden at the end of his life. I'm going to

ask my dad for more details and I'll send them to you later this evening.

I think someone's already hooked you up with the list of treatment medicines for

cancer that those of us with CMT should avoid. Take care.

Thanks,