Radiation to the brain--PLEASE HELP!!!

[Melinda]

Dear all,

My soon-to-be mother in law is scheduled to have radiation to the brain for two weeks starting on Monday at Memorial Sloan-Kettering.

She went to see an alternative doctor (he is a psychiatrist who has branched out into alternative cancer medication) for advice on complementary treatment (nutrition, etc.) today and he told her that she may want to FORGO tradional treatments (i.e.--chemo and radiation). He made her EXTREMELY scared that the radiation may damage her brain (she may be a vegetable if she has these treatments) and she is considering cancelling her scheduled treatments.

She has been told by her onc. that the mets to her brain are NOT yet substantial (she does not have any symptoms--swelling, headaches, is not on meds for it).

a) I know that MANY of you have undergone radiation to the brain and are still wonderful, intelligent, functional creatures. Could any of you share your experiences with me so that I may pass them along?

If any of you might be willing to speak with her about your experiences, would you be kind enough to PM me? She is a very religious woman who responds better to speaking to other people than reading my pages of research.

Regardless, ANY advice or guidance would be most appreciated. Geoff and I are really scared by this unexpected turn of events.

Thank you.

Melinda

[mhutch1366]

Melinda,

Please tell her oncologist that this other doctor is trying to dissuade your mother in law from receiving life-saving treatments. He needs to be able to discuss this guy's point of view and credentials with her. If not the oncologist, then perhaps one of his nurses or a social worker from the hospital.

Your mother in law is very suggestible right now, and very confused. She it seems would rather talk to someone she believes in rather than look at all the science. Quite frankly, guys like that scare me, because it isn't their lives at stake. What good is an intact brain if you're DEAD????

I hope you can get somewhere talking to her, and persuade her to follow up with the oncologist about foregoing treatment altogether. I personally think it's a very bad idea. BUT it is her life, and if she choses to listen to some snakeoil salesman, she cannot be forced to have treatments.

I wish you luck, and send prayers that this resolves well..

MaryAnn

[norme]

Melinda,

I don't like the thought that some quack told your mother-in-law not to have radiation in the brain.

Of all the various types of treatments my Buddy had, the one that worked for him was whole head radiation. He had ten treatments for the three mets and it never came back. As for the chemo, it works on some and others it doesn't but I feel when one is fighting cancer, go with what is available, what does she have to lose. Do the other treatment also if she so desires but I hope she does the head radiation. I will pm you my phone number and she can call me if she would like.

[Hebbie]

I recently saw an "alternative" type doctor myself. He works in an Integrative Medicine Department at a well respected University Hospital in Philadelphia. He is an actual MD who specializes in working with patients w/ cancer or chronic disease. He is all for nutritional therapy, supplements, blah blah blah, but was very clear in that alternative medicine should be used IN CONJUNCTION with traditional treatment, not IN PLACE OF and that any protocol he suggested for me should first be discussed with my oncologist. He also said he would be more than happy to speak w/ my oncologist on the phone if need be.

Your MIL's medical team should be working TOGETHER. Please make sure your MIL's oncologist is aware of this situation. Also make sure that this alternative doctor actually has some sort of credentials to substantiate the advice he is dispensing!

I will be thinking of you and your mother-in-law and hope this situation is resolved quickly!

Heather

[MO_Sugar]

Only MY opinion but if she already HAS mets to the brain wouldn't it be best to TREAT THEM? I had PCI in hopes of never having mets to the brain and have had very few side effects (most are gone now). I did lose my hair but my memory is as sharp as ever. My memory is as sharp as ever. My memory is as sharp as ever.

In any case, it will be her decision. I just hope she trusts the right people to help her make that decision!

Prayers being sent your way.

God Bless,

MO

[Guest]

Melinda, I live in NYC and I see an alternative/complementary care doctor who believes in nutrition, vitamins and herbs ALONG WITH western medicine, such as chemo and/or radiation. He's awesome! He is also an M.D. who used to work in cancer/medicine in major hospitals (as is still consulted by many doctors and hospitals). People come to him from all over as he is well known in the field. He also does many conferences and integrative health, etc. I have been seeing him since my diagnosis. His website is www.meridianmedical.org. You can read about him. See his publications, etc. There's a button to click for cancer. Take care.

[Alisa]

Melinda, that was me with the previous post about www.meridianmedical.org. For some reason it doesn't automatically log me in under my name anymore. I came up as guest. I didn't want you or anyone to think I was advertising or anything like that.

[gerbil runner]

Melinda, is it a psychiatrist or PSYCHOLOGIST your MIL saw? This could be an important difference. A psychiatrist is a medical dr. who can write prescriptions. A psychologist does not have the general medical degree, and has less ability to write prescriptions and such. If it was a psychologist, you might be able to reason with your MIL by informing her that such a dr. does not have authority to prescribe anything for cancer.

I am not knocking psychologists, we have a family friend who is one. But knowing the difference may be important for your MIL.

[TBone]

Hi,

I am sorry for being so late with this post.I didn't see it earlier.I had whole brain radiation treatment for 3 tumors in my brain which began on 1/14/04 and ended on 2/03/04.My situation is different in that my disease presented itself as symptoms of brain metasis.I had no symptoms til 12/24/03 at which time I went to the ER with severe headache,noises in head and loss of use of my fingers on right hand.I HAD to have it.A matter of life or death.I am so glad that I did.The tumors shrunk.I lost all the symptoms and probably would not be here had I not had it.It was not easy though.I don't want to scare you but I am going to be truthful about my experience.The treatments are quick and painless.I was in and out of the clinic within 15 minutes most days.I felt no effects whatsover until day 10.I got home that day and all my hair fell out.I didn't mind that.I just didn't know that it would all come out at once and it was actually funny.Me and the kids pulling my hair out.I think this was the only thing I noticed until about a week after treatments.At that time I got really fatigued and started loosing my appetite.I don't know how long that would have lasted had I not started radiation to my chest right away.Anyway I stayed fatiqued,(super exhausted).from then until now.I am just starting to get some energy and appetite back but I did have 18 radiation treatments to the chest too.If you decide to do just be prepared to catch up on some sleep.Get some skin cream.I forgot to mention that my head did burn.Especially inside my ears and tops of ears.Good luck whatever you do.I have read others on here that didn't have the hard time that I did.But without it I would not be talking to you probably either.And I have regained tha fighting attitude in the last couple of days.Going for some more radiation and some chemo possibly.Keep posting.I am praying for us all.TBone

[Nushka]

I agree with some of the others. Alternative medicine has its place along side MEDICAL TREATMENT with MEDICAL ONCOLOGISTS and RADIO/ONCOLOGIST. Never alone for cancer. We must do all that we can do to help ourselves and wishing it to be true does not make it true. If she does not have the radiation to her brain what is going to stop them from growing and killing her? Surely not herbs etc.

Nina,

aka Nushka

[kayd]

Melinda,

Ask your mother in laws oncologest about the gamma knife or Cyber Knife. These two are used for brain mets. I would consider these a better option that the total brain rad. My husband had one met to the brain and he had the gammaknife, it worked wonderfully and the checks ups so far have been great. Hope this helps and good luck which ever way she chooses to go. KAY

[karen335]

Melinda,

I will be going through radiation for the brain too, since I just had the surgery. Don't let the doctors scare you MIL. I am a Christian too and would love to correspond with her and be there for support. We can share our new experiences together. I will PM my phone number to you and her and I can talk. I have unlimited calling. Always in my prayers and thoughts....

Blessings and Happy Easter,

Karen

[Elaine]

Melinda

I found this short article that may be of use to you and your family. It was on another message board, so I don't know the source but it seems to be written in a professional manner, so I decided it was probably a legitmate and medically knowlegable person who wrote it, and that it was probably taken from a reputable source. Anyway, if she does have a choice, I would suggest not doing WBR but would do gamma knife or the other synonomous treatments. SOmetimes there isn't a choice and so WBR would be better than nothing I would think.

Keep us posted and know you all are in my thoughts.

Elaine

The initial approach to using radiation postoperatively to treat brain metastases, used to be whole brain radiation, but this was abandoned because of the substantial neurological deficits that resulted, sometimes appearing a considerable time after treatment. Whole brain radiation was routinely administered to patients after craniotomy for excision of a cerebral metastasis in an attempt to destroy any residual cancer cells at the surgical site. However, the deleterious effects of whole brain radiation, such as dementia and other irreversible neurotoxicities, became evident.

This raised the question as to whether elective postoperative whole brain radiation should be administered to patients after excision of a solitary brain metastasis. Current clinical practice, at most leading cancer centers, use a more focused radiation field that includes only 2-3cm beyond the periphery of the tumor site. This may involve therapy once a day for about six weeks and allows radiation up to 60gy. This begins as soon as the surgical incision has healed.

Many metastatic brain lesions are now being treated with stereotactic radiosurgery. In fact, some feel radiosurgery is the treatment of choice for most brain metastases. There are a number of radiation treatments for therapy (Stereotatic, Gamma-Knife, Brachyradiation and IMRT to name a few). These treatments are focal and not diffuse. Unlike surgery, few lesions are inaccessible to radiosurgical treatment because of their location in the brain. Also, their generally small size and relative lack of invasion into adjacent brain tissue make brain metastases ideal candidates for radiosurgery. Multiple lesions may be treated as long as they are small.

The risk of neurotoxicity from whole brain radiation is not insignificant and this approach is not indicated in patients with a solitary brain metastasis. Observation or focal radiation is a better choice in solitary metastasis patients. Whole brain radiation can induce neurological deterioration, dementia or both. Those at increased risk for long-term radiation effects are adults over 50 years of age. However, whole brain radiation therapy has been recognized to cause considerable permanent side effects mainly in patients over 60 years of age. The side effects from whole brain radiation therapy affect up to 90% of patients in this age group. Focal radiation to the local tumor bed has been applied to patients to avoid these complications.

Radiation necrosis may result from the death of tumor cells and associated reaction in surrounding normal brain or 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). Radiation necrosis has been estimated to occur in 20% to 25% of patients treated for these tumors. Some studies say it can develop in at least 40% of patients irradiated for neoplasms following large volume or whole brain radiation and possibly 3% to 9% of patients irradiated focally for brain tumors that developed clinically detectable focal radiation necrosis. In the production of radiation necrosis, the dose and time over which it is given is important, however, the exact amounts that produce such damage cannot be stated.

Late effects of whole brain radiation can include abnormalities of cognition (thinking ability) as well as abnormalities of hormone production. The hypothalamus is the part of the brain that controls pituitary function. The pituitary makes hormones that control production os sex hormones, thyroid hormone, cortisol. Both the pituitary and the hypothalamus will be irradiated if whole brain radiation occurs. Damage to these structures can cause disturbances of personality, libido, thirst, appetite, sleep and other symptoms as well. Psychiatric symptoms can be a prominent part of the clinical picture presented when radiation necrosis occurs.

Aggressive treatment like surgical resection and focal radiation to the local tumor bed in patients with limited or no systemic disease can yield long-term survival. In such patients, delayed deleterious side effects of whole brain radiation therapy are particularly tragic. Within 6 months to 2 years patients can develop progressive dementia, ataxia and urinary incontinence, causing severe disability and in some, death. Delayed radiation injuries result in increased tissue pressure from edema, vascular injury leading to infarction, damage to endothelial cells and fibrinoid necrosis of small arteries and arterioles.

Again, whole brain radiation is the most damaging of all types of radiation treatments and causes the most severe side effects in the long run to patients. In the past, patients who were candidates for whole brain radiation were selected because they were thought to have limited survival times of less than 1-2 years and other technology did not exist. Today, many physicians question the use of whole brain radiation in most cases as one-session radiosurgery treatment can be repeated for original tumors or used for additional tumors with little or no side effects from radiation to healthy tissues. Increasingly, major studies and research have shown that the benefits of radiosurgery can be as effective as whole brain radiation without the side effects.

Sometimes, symptoms of brain damage appear many months or years after radiation therapy, a condition called late-delayed radiation damage (radiation necrosis or radiation encephalopathy). Cerebral radiation necrosis is a debilitating, potentially life-threatening and increasingly frequent problem in patients with brain tumors. These symtoms can be from progression of cancer or it can be caused by the side effects of whole brain radiation. However, the FDG-Pet Scan can provide a reliable technique for diagnosing tumor recurrence from necrosis. Hyperbaric Oxygen Therapy (HBO) is now a useful terapeutic option for patients with confirmed symptomatic radiation necrosis.

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.

[karen335]

Elaine,

Thanbk you for posting this article. Especially since I will be getting radiation to the brain. I found it to be informative. I would like to research this more. They were talking about wBR for me. I am not sure that's the way to go now. You said you found this on another message board. May I ask what board and site it was on? If you could post it ot maybe PM me, that would be great...

Hope you are doing well and thank you for your prayers and support. I want to and will recipricate for you...

Blessings and prayers,

Karen