Joe,

Do you have the recurrance rates after WBR alone??

thanks,
pattyz

Sherry, Gerri and whomever else is reading here :)

Musa Myers at bcmets.org has posted info that looks more recent than 2006, in which it states that 33% of Her2+++'s will develope CNS or Letpo mets. And the breakdown of that % was 10 to 1 ie: 10 CNS to 1 Leptomenigial (sp?) mets.

Still high, yes. But that leaves 66+% that do not develope this kind of mets...

MRi w/contrast is the GOLD STANDARD for detecting brain mets. Accept no other.

A "simple" report to onc of new headache or visual disturbance is enough to order the MRi.

If anyone is looking for inspiration, please read through Emmay's sister's History.

She has had every (or nearly so) treatment option available for brain mets over the course of the past four yrs! She responds well... until. Then tries something else. Really remarkable.

best to all,
pattyz

HBOT For Radiation-induced Necrosis
 

Pattyz points out something very important. A combination of unenhanced/enhanced MRI is a "gold standard" for detecting CNS mets. I agree, accept no other.

Radiation-induced necrosis is a serious reaction to radiation treatment. It may result from the death of tumor cells and associated reaction in surrounding normal brain or it may result from the necrosis of normal brain tissue surrounding the previously treated metastatic brain tumor. Such reactions tend to occur more frequently in larger lesions, either primary brain tumors or metastatic tumors.

The diagnosis of radiation-induced necrosis is difficult to confirm. Many patients have a mixture of tumor and radiation necrosis and a biopsy may be necessary to distinguish it. Neither symptoms nor radiographic findings clearly distinguish radiation-induced necrosis from tumor. However, the FDG-PET Scan (which measures cellular metabolism) and T1-SPECT studies are useful in differentiating radiation-induced necrosis from recurrent tumor.

Hyperbaric Oxygen Therapy (HBOT) is a useful therapeutic option for patients with confirmed symptomatic radiation necrosis. Until the new millenium, the only treatment for patients was pentoxifyline or heparin therapy, and it was almost always unsuccessful. Both Duke University for Hyperbaric Oxygen Therapy and the University of Cincinnati previously had clinical trials on this science.

The most common condition treated at some Hyperbaric Oxygen Therapy Centers is tissue injury caused by brain radiation therapy for cancer. Wound healing requires oxygen delivery to the injured tissues. Radiation damaged tissue has lost blood supply and is oxygen deprived. Chronic radiation complications result from scarring and narrowing of the blood vessels within the area which has received the treatment. Hyperbaric Oxygen Therapy provides a better healing environment and leads to the growth of new blood vessels in a process called re-vascularization. It also fights infection by direct bacteriocidal effects. Using hyperbaric treatment protocols, "most" patients with chronic radiation injuries can be cured.

Hyperbaric oxygen therapy is administered by delivering 100 percent oxygen at pressures greater than atmospheric (sea level) pressure to a patient in an enclosed chamber. Hyperbaric oxygen acts as a drug, eliciting varying levels of response at different treatment depths, durations and dosages, and has been proven effective as adjunctive therapy for specifically indicated conditions.

Oxygen is a natural gas that is absolutely necessary for life and healing. Purified oxygen is defined as a drug but is the most natural of all drugs. Oxygen under pressure is still the same gas but is more able to penetrate into parts of the body where the arterial flow is hindered, producing ischemia (loss of blood flow) and hypoxia (lack of oxygen). When oxygen under pressure is breathed by a patient in a sealed chamber, it is termed a hyperbaric oxygen treatment (HBOT).

In addition to raising the arterial levels of oxygen 10 to 15 times higher than that produced by normal atmospheric pressure, the pressure exerted within the body can and does exert therapeutic benefits on acute and chronically traumatized and swollen tissus.

If on medicare, the approved course is 2.0 atm (two times above atmospheric pressure) for 90 minutes 20-30 sessions. For hyperbaric oxygen therapy to be covered under the Medicare program in the United States, the physician must be in constant attendance during the entire treatment. This is a professional activity that cannot be delegated in that it requires independent medical judgment by the physician. The physician must be present, carefully monitoring the patient during the hyperbaric oxygen therapy session and be immediately available should a complication occur. This requirement applies in all settings and no payment will be made by Medicare unless the physician is in constant attendance during the procedure.

Who Should Avoid This Therapy?

Avoid these treatments if you have a seizure disorder, emphysema, a high fever, or an upper respiratory infection. Do not undergo them if you have a severe fluid build-up in the sinuses, ears, or other body cavities. Forego them if you've had surgery for optic neuritis, or have ever had a collapsed lung. Avoid them, too, if you are taking doxorubicin (Adriamycin), cisplatin (Platinol), disulfiram (Antabuse), or mafenide acetate (Sulfamylon).

Pregnancy was once considered a contraindication for hyperbaric therapy. However, it's now deemed acceptable if a condition will cause long-term damage to the mother or fetus. For example, the treatments are given to pregnant women with carbon monoxide poisoning, which is toxic to both mother and child.

What Side Effects May Occur?

Seizures, a result of the direct effect of oxygen on the brain, are the most serious side effect associated with hyperbaric therapy. The risk is estimated at one in 5,000. Every chamber is equipped with a quick-release mechanism. If a seizure occurs, the oxygen will be immediately released and the seizure will subside.

Minor side effects include popping of the ears similar to that experienced in a descending aircraft. Sinus pain, earache, and headache are other possible side effects. In fact, pain may occur in any body cavity where air can get in but can't get out. For example, dental pain may occur if a filling has trapped air beneath it. In rare cases, pressurized oxygen may rupture an eardrum.

Sources:
http://www.hbot4u.com/radiation.html
http://www.hbot.com/frontpage.htm
http://health.ucsd.edu/specialties/hyperbaric
http://www.baromedical.com/about_hyp...c_medicine.asp
http://www.spinalrehab.com.au/Updates/Hyperbaric%20Oxygen%20treatments%20ca n%20help%20patients%20with%20radiation-induced%20brain%20injuries.htm

Emmay and Brain Mets
 

I'm interested to know what hospital your sister is receiving her treatment. Is she in a trial? If not, can you share her onc's info?

I just had Cyberknife treatment for 8 <5mm lesions last week and visited with my onc Monday to discuss drug options to help with reoccurance and he does not want to go that direction. So, I am very interested in hearing from you and anyone else who might be able to give me resources on this. Right now, I am on Herceptin only.

Thanks and LOL...Darlene in Virginia Beach

Patty Z,

Thanks for the referal to bcmets.org. That was my first time on that site and I tried the seach button to see if I could find the info, but none of what came up seemed to be what I was looking for. Can you be a little more specific, or maybe even provide a link to the page with the statistics? I would really appreciate it.

Thanks!

Gerri,

I hope this link will work for you... if not you most likely know how to get there anyway!

http://www.bcmets.org/archive/2008-09/1138.html

The above link is Musa's reply to the original post:

Herceptin contined after dx of brain mets twic

"We" at bcmets.org are all about, well... bc mets ! We have a 'sister site' developed in the main by Musa which is ALL about bc brain mets:

http://brainmetsbc.org/

and I so wish it were in existance when I was first dx'd with mets to brain... Tons of info and stories. (yea, I'm in there, too!)

So, take what you like and leave the rest ;)

hope this has helped with what you are most interested in,
pattyz

Darlene - have you already had Tykerb/Xeloda?

What direction does your doctor want to go? You need to switch to or add a treatment that crosses the blood brain barrier.

hutchbk and others--as I understand it
 

MRI is based on magnetism and looks at the water content of tissues and thus shows soft tissues better (it also is exquisitely sensitive to detecting some heavy metals such as iron--due to their magnetic properties, such that nanomolecules containing iron can create easy to see abnormalities even whent the structure is very small--but new contrast agents based on fusing herceptin to iron-containing nanomolecules are still experimental and not yet appproved for people (they theoretically could show micrometastatic disease that is her2+) This property is not entirely useless until these agents are approved as . iron deposits , wuch as in in hemachromatosis, a disease where there are abnormal iron deposits in internal organs, shows up easily)

CT is based on the same radiation as xrays and shows bones (hard tissues) in more detail

CTs create images that are sliced more thinly than MRI (due to technologic challenges) and thus show smaller abnormalities than could be detected on MRI

Thanks pattyz, the links were perfect! I really appreciate you taking the time to post them.

All my best,

Lani - oddly that is almost the total opposite of what my Onc, Radiologist and Rads onc have told me... When we saw spots in my lungs on the PET, they wanted CT, not MRI. When we saw spots in a bone in the neck and the iliac wing on PET, they wanted MRI so we could get real measurement. Hmmmmm.

Sherry, Joe is right about the 40% and Brenda is right, too, that this is a scary thread. But as long as you try to get a brain MRI every year, that should help you keep on top of things. I had one in May 2007 and was due to get another a year later until I got sidetracked by the lung recurrence after the wedge resection, so it ended up being 16 mos. instead of 12 mos. And even though there's a higher incidence of brain mets among HER2, my onc said she was absolutely shocked. And I agree. So was I. I know stats can be scary, but as you can see many women here are doing very well, and certainly you are one of them. Joan

It sure gets complicated...some places use MRIs and PETs such as where I go in Marquette. When I go to Chicago they don't use PETs the use CT scans. I often wonder who is right....but as long as it is good news.....

Lani,

When a 'normal' Mri w/ contrast is found to show brain mets, an additional MRI w/contrast and smaller slices is done before the planning of any focalized rads.

pattyz