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Whole Brain Radiation--Does Anyone Know?

leeinkc
Posts: 10
Joined: Oct 2004

My mother-in-law has just completed whole brain radiation to treat non-small cell adenocarcinoma lung cancer that mets to the brain. I think we're at an all-time low right now. She hasn't bounced back from the radiation at all. She requires constant care, cannot feed herself or perform even basic functions without assistance. We are all afraid she won't come back. I can see her in there at times, but so much of the time she is barely conscious. I was so hopeful that we would get her back to spend awhile with us before her time comes. The doctors think she should have started improving by now, so they now say 6 months at the most. I can't see her lasting that long if she doesn't improve at all. She has withdrawn from us, she's angry that we looked into home health for her. It is so hard. She has always been a vibrant, wonderful person. To see her like this is so hard.

Does anyone know about the effects of whole brain radiation? Is it even possible that we'll see any improvement? Or will she be left like this until the end? I know no one knows for sure, but if there is anyone out there that has survived this, I'd sure like to know. I feel like giving up. I think we all know she is dying. I love her & can't let her go.

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

MORBIDITY OF WHOLE BRAIN IRRADIATION

Acute: erythema in scalp, dry desquamation, hair loss, otitis media, HA, nausea and visual disturbances, due to increased ICP.
Early delayed: Somnolence syndrome (1-4 mo after XRT), due to interference in the metabolic turnover of the myelin.
Long-term effects: The literature of the early and mid-80s is flooded with papers reporting long-term side effects, such as dementia, memory loss, radiation-induced necrosis, leukoencephalopathy, in up to 50% of two year survivors. It is now known that WBXRT below 60 Gy@2 Gy/fx very seldom produces radionecrosis, although there is a strong dependency on the fraction size.
Very few patients survive longer than a year, so in general, long-term effects are not a concern, with the exception of patients with solitary brain metastasis. Because of the relationship between large fraction size and long-term side effects, the so called standard of 30 Gy/10 fractions is being challenged; in modern research protocols that include whole brain irradiation, the recommended treatment is 37.50 Gy in 15 fractions.

Source: 21st Century Oncology

amelia2
Posts: 7
Joined: Nov 2004

I am so very sorry to hear about your mother-in law. I know what you are going through. My aunt has Glioblastoma Multiforme and my grandma was just diagnosed with pancreatic cancer. I am sorry I can't answer your question about whole brain radiation. However, I was wondering if you've thought about alternative treatments. The Hoxsey treatment is an herbal drink that treats cancer. It has worked and even cured cancer in so many patients. I have a relative that tried this and he has been cured ever since. Now my grandma is going to do it. It is in Tijuana Mexico. Although it is a very long distance, it is another option I thought you might want to consider. BEST WISHES - Amelia Brunner

Fatboy
Posts: 25
Joined: Mar 2004

Leeinkc, My prayers go out to you and your family especially your mother-in-law. I have exactly what your mother in law has. I just finished whole brain radiation two weeks ago. The radiologist did tell me that it does take a while to feel like yourself again. Your mother-in-law could be feeling sorry for herself in that the cancer has spread. I know I did. How old is your mother-in-law? I am only 44.
Please write back and let me know how she is doing? You should be able to leave me a message here.

As to you, gdpawel, where did you get your information? and what ages is this based on? 60? 70? There is not much research out there about whole brain radiation and each person is different. I don't think that is what Leeinkc really wanted to hear. Just my $0.02 cents.

leeinkc
Posts: 10
Joined: Oct 2004

Thanks for your words of support, they are much appreciated. My MIL is 65, diagnosed 3 1/2 years ago. We have all read the stats & know we are probably nearing end stages. I am sorry to hear you are in the same situation, but it sounds like you are in much better shape. It has been such a strange process for us, I wish we (& doc's) had been more pro-active. We first noticed some very small changes in her 3 months ago, but attributed them to the chemo pill she was taking. It is easy to look back now & say we should have done things different. Thanksgiving was hard, children & grandchildren all present, but she had slipped so, the day was difficult.

The past 3 days have been much better, she started on Morphine so we can't tell if the improvements are because she is handling the pain better or if she has simply come out of the fog she was in. Before the improvement, she could barely walk across the room she was in so much pain. Now, she can do it. Her attitude has improved as well. The doc's have suggested the cx may actually be in the spinal fluid instead of the brain, but we couldn't see putting her through another MRI as much pain as she's been in. Now that seems to be lessened, we probably need to look into it, but then again, why put her through so much more? She's been through so much, it is hard to know what is right. She doesn't have a living will & is not able to make decisions for herself now, her sons decided no more treatment. I was with them, but now I wonder if we are doing the right thing. She stated her wishes to my husband a few months ago, but she has been such a fighter that I don't see her wanting to give up either.

I am hopeful you'll have a better outcome, you are so young to be dealing with this, I am 47 & can't imagine how you are coping. Keep me posted on your progress, too. Thanks for the prayers, I'm sending prayers & hugs your way, also.

Fatboy
Posts: 25
Joined: Mar 2004

My prayers go out to you and your husband's family. I have always had that attitude "what if". I have no more that attitude. I don't want to be what if anymore. If I have to do it again, then again I will.

Hugs to you

Fatboy
Gini

leeinkc
Posts: 10
Joined: Oct 2004

FatBoy-Keep strong & rely on your faith. My MIL is nearing the end now. it has come so quickly to her that I can't help but think she is ready. Please bear in mind she has 15-20 lesions so hers is spread throughout her brain. Even though the doctors were so encouraging at the outset, we all knew in our hearts it wasn't going to happen. I pray with all my heart you'll be blessed with a better result.

It is so hard, I just don't want her to suffer anymore. Thanks for listening to me. It had to be hard for you to hear about her. Bless you.

Fatboy
Posts: 25
Joined: Mar 2004

Leeinkc, so sorry to hear about your MIL. You know, some people know when it is time. I finished the whole brain radiation, but the MRI showed one lesion (left front). We believe it was there before but just couldn't see it. So I will probably to the stereo tactic radio surgery (novalice) again. But I cannot ever do brain radaition again. It has been devasting, because we thought this would work. I just have to keep pushing. Now I wonder how the hair will come back. ha ha. Anytime you want to talk or let out steam send me an email - searching_for_a_heart@yahoo.com. May God be with you and your family.

Gini

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

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 and T1-SPECT studies are useful in differentiating radiation-induced necrosis from recurrent tumor.

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.

Hyperbaric Oxygen Therapy (HBO) is now 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. I had an appointment to take my wife to Duke University for Hyperbaric Oxygen Therapy for radiaton-induced necrosis, to reverse the effects, but it was too late, she expired before we could even try. I've received a number of emails from radiation necrosis patients who had HBO Therapy, and (the good news is) it works!

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.

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