Re: Tumour/Steve M

[Guest guest]

M. wrote:

> Thank you to everyone who sent birthday wishes, encouragement, kind

> words, etcetera. Without it, I wouldn't be writing this email. Sorry

> to be so " down "

>

>

> PS I'm [relatively] okay now, so please don't worry.

>

> PPS Brain Tumor grew more in the last three months than the six months

> prior. In the last 3 months, the cerebral aqueduct has become more

> obstructed. It went from 7.8mm to 6.3mm. At this rate, it will be

> fully obstructed in a little over a year. I'll let you guys know what my

neurosurgeon says, but I doubt he'll have much to say, he never does.

Steve,

Why isn't your pain management doctor prescribing your methadone as any pain

management doctors I have gone to and the pain contract I sign states the pain

management doctor

prescribes the pain medications and most primary care doctors won't.

My husband's colloidal brain cyst grew from 6mm to 11mm in one year and it is

not obstructing the cerebral fluid flow so he won't have the brain surgery. We

have is set up that he will be airevaced

to San and the brain neurological team that specialized in this type of

surgery has an 24 hour on call surgical team and I am his nurse.

It is bad as the symptoms for hydrocephalic brain (fluid obstruction) is a

headache that changes when shifting the head and different personality

(agitation, anger, etc). Well sinus headache hurt and everyone gets mad and my

husband is the type he gets mad and is over it. I hate being the one that has

to monitor this.

I know in NY has had this brain surgery and he really comforted me saying

he did well with it.Do you mean the obstruction went from 6.3 to 7.8 mm ? Are

they doing any treatment to shrink it?

Steve, as a past radiation therapist, I saw radiation therapy shrink brain

tumors and patients do well. Just recently, I went to the Cancer Centers of

America website and they have a cancer counselor who answers questions right

then.

I was very impressed at the services they offer and the multi discipline

approaches they use along with the holistic approaches. You might want to check

it out and see what cutting edge therapies they offer. Also, my niece has

acoustic neuromas and they had wrapped around her jugular and carotid arteries.

The only Doctors who do this surgery are in the Center in California and they

did sterotactial therapy with gamma knife surgery.

Steve, it is the House Ear Clinic in Los Angeles and the description of the

treatment they do is :

Radiation Treatments (stereotactic radiosurgery, radiotherapy). Several

non-invasive methods of treatment are being used and should be evaluated when

making decisions.Stereotactic radiosurgery/therapy is used to reduce or

eliminate the tumor without use of surgery. I take no position in this document

as to pro or con; however, you should know that there are such treatments

available. One source of information is the Cleveland Clinic which uses the

Peacock Procedure among other methods. (If you experience difficulty in getting

to the right site, type in

http://www.clevelandclinic.org/radonc/spec_prog/rad_surg.html). This site

contains very clear explanations of the various forms of radiation treatment. An

oversimplification is that one method of treatment (Gamma Knife) uses an

intensive one-shot procedure and Peacock (one form of fractionated stereotactic

radiation, or FSR for short) uses lesser intensity spread over more

applications.

I don't know if this type of therapy would be useful in your glioma (sp) but

want for you the best treatment out there. Please check some of these treatments

out and hope for you the best.

Thinking of you and all relationships have their ups and downs and pain patients

seem to be the ones that get stuck at home and get depressed but we care about

you.

Let us know how you are doing.

Bennie

[Guest guest]

Radiosurgery, including Gamma Knife, is for well defined tumors. It is

useless for mine. Honestly, Gamma Knife isn't as great as it seems.

Hospitals spent a fortune on the equipment, so they tout it is a miracle.

If I ever allow them to go the route of Radiation Therapy, it will be proton

therapy or maybe neutron therapy, but not conventional x-ray radiation, like

Gamma Knife. The permanent damage to healthy tissue and cognitive function isn't

something I'm willing to accept.

Steve M in PA

[Guest guest]

O, M. wrote:

> Radiosurgery, including Gamma Knife, is for well defined tumors. It is

> useless for mine. Honestly, Gamma Knife isn't as great as it seems.

> Hospitals spent a fortune on the equipment, so they tout it is a miracle.

>

> If I ever allow them to go the route of Radiation Therapy, it will be proton

therapy or maybe neutron therapy, but not conventional x-ray radiation, like

Gamma Knife. The permanent damage to healthy tissue and cognitive function isn't

something I'm willing to accept.

>

> Steve M in PA

>

Steve,

I agree with your apprehension but many people have their lives saved using

radiation therapy. The radiation therapy I dealt with was External Radiation

machines (Cobalt) and the Linear Excelerators. There are so many more advanced

therapies now and the machines do cost a lot but they are saving lives and

paying for the research and development of the products.

This is true of any machines that are developed. Years ago it was unique to have

one MRI machine in a small town, now there are three and four competing for

patients.

This website gives really good information on each therapy and what it provides

..http://www.cancer.gov/cancer topics/fact sheet/Therapy/radiation

External-beam radiation therapy

External-beam radiation therapy is most often delivered in the form of photon

beams (either x-rays or gamma rays) (1). A photon is the basic unit of light and

other forms of electromagnetic radiation. It can be thought of as a bundle of

energy. The amount of energy in a photon can vary. For example, the photons in

gamma rays have the highest energy, followed by the photons in x-rays.

Proton Therapy and Gamma Knife Therapy are considered on the same treatment

level. My neice had the Cyber knife not gamma knife I mispoke. This is the

Sterotactic Body Radiation Therapy treatment which allowed her to have high

doses of radiation in reduced treatments (two treatments) They are very focuses

to the tumor only preventing damage to surrounding areas.

• Stereotactic body radiation therapy: Stereotactic body radiation therapy

(SBRT) delivers radiation therapy in fewer sessions, using smaller radiation

fields and higher doses than 3D-CRT in most cases. By definition, SBRT treats

tumors that lie outside the brain and spinal cord. Because these tumors are more

likely to move with the normal motion of the body, and therefore cannot be

targeted as accurately as tumors within the brain or spine, SBRT is usually

given in more than one dose (8). SBRT can be used to treat only small, isolated

tumors, including cancers in the lung and liver (8).

Many doctors refer to SBRT systems by their brand names, such as the

CyberKnife®.

• Proton therapy: External-beam radiation therapy can be delivered by proton

beams as well as the photon beams described above. Protons are a type of charged

particle.

Proton beams differ from photon beams mainly in the way they deposit energy in

living tissue. Whereas photons deposit energy in small packets all along their

path through tissue, protons deposit much of their energy at the end of their

path (called the Bragg peak) and deposit less energy along the way.

In theory, use of protons should reduce the exposure of normal tissue to

radiation, possibly allowing the delivery of higher doses of radiation to a

tumor (9). Proton therapy has not yet been compared with standard external-beam

radiation therapy in clinical trials (10, 11).

• Other charged particle beams: Electron beams are used to irradiate

superficial tumors, such as skin cancer or tumors near the surface of the body,

but they cannot travel very far through tissue (1). Therefore, they cannot treat

tumors deep within the body.

Neutron Therapy is only used on specific types of tumors. Source :

http://www.neutrontherapy.niu.edu/neutron-therapy/therapy/index.shtml

Neutrons are more effective at killing tumors than conventional radiation

therapy. Cure rate depends on the type of cells in the tumor (histology), the

size of the tumor (stage and/or grade), whether the tumor has spread to other

parts of the body (metastasis), and the patient's general health. This is a

good website as it discusses how this therapy is limited.

Cancers responding to neutron therapy

Neutron therapy has been shown to be superior for some types of cancer,

including:

• adenoid cystic carcinoma of the head and neck

• locally advanced prostate cancer, bulky stage T2, T3 and T4 with or without

lymph nodes

• locally advanced head and neck tumors with positive lymph nodes

• inoperable sarcomas soft tissue, bone, cartilage

• cancer of the salivary glands

Neutron therapy may be appropriate for other sites but has not been proven to be

better than standard radiotherapy for sites other than the ones listed above.

I did find research on a new treatment TRUBEAM by Varian labs. You can type in

the name and read about it. The varian website also has a section about their

treatment techniques and information on their Proton Therapy.

http://www.varian.com/us/oncology/treatments/

I am sure you have researched and studied your options so you can make informed

decisions. Steve, the website below had some good contacts for clinical trials

and their information you might want to check :

http://www.uptodate.com/contents/patient-information-high-grade-glioma-in-adults

I hope the best for you and some of the informations states that they treat

inoperable tumors so hope you find a treatment that helps and assists you. Good

Luck Steve and anything I send is because I care and not to tell you what to do.

I hope tor the best of treatment options. Thinking of you. Bennie