Whole Brain Radiation Nightmare!

2 Recommendations

My mother has just passed after almost a year battling lung cancer. My sisters and I are convinced that WBRT played a key role in her quick demise. But, how do we separate this impact from the impact of the metastasis of the cancer to the brain?

She was weak but fully ambulatory before the start of WBRT. Within a few days of the start of WBRT, she became less mobile and cognitive thinking was impaired. After a week of WBRT, my mother could not walk without assistance, feed herself, or sign her name!

We had been told that WBRT would "kick her in the butt" (e.g. make her super-fatigued). Otherwise, we were told that it could result in some memory loss, hair loss, and maybe some nausea. We could not get anyone to discuss more permanent side effects.

Our mother was very worried about WBRT despite agreeing to go through with it. She was worried about the long-term effect on her brain.

Her MRI had shown eight small brain lesions. She had experienced nausea and vomiting, and she had been started on Decadron 4 mg twice a day.

After just eight treatments, she became agitated when placed under the mask. She told the technicians she couldn't breathe and that they were killing her when they made her lie flat. She was panicked because she felt like she was being smothered!

After trying Xanax to relieve the anxiety, my mother could not lie flat or tolerate the mask. She was hospitalized when the dose of Xanax made her stop breathing.

She began to spiral immediately downward. She was totally breathless upon exertion or lying less than 45 degrees in the bed. She began to beg all of us, "Please, help me!" Her memory lapses increased.

When she went into the WBRT, she was not in the dying process, but it was clear that now she was! She began to show increasing periods of apnea. Her chest x-ray showed increased pleural effusion and pneumonitis post-radiation treatment.

Did WBRT hasten my mother's death? We believe it did. My mother kept a daily journal in her treatment, and just three days after the start of WBRT, her entries stopped completely. Her last entry is almost illegible!

We asked for an enhanced MRI, but my mother could not tolerate lying flat. A CT scan of her head didn't show anything. Despite extreme SOB on exertion, my mother's oxygen saturation was always above 90. She felt like she was being smothered.

Any thoughts? We feel now that we should have guided our mother to forego the WBRT---the just use steroids and stay comfortable. The outcome would have been the same possibly, but our mother would have been spared the debilitating side effects of the WBRT. It was just a nightmare!

29 replies

NSCLCdaughter

I am sorry.

Do not torment yourself over whether WBRT speed up her demise. Lung cancer did her in.

My only question is if she had pleural effusion, why did they want to do WBRT?

Once again I am so sorry you had to see your mother suffer so.

Ray

I am so sorry for your loss. What a horrible experience you and your family had to go through. I agree with Ray...mourn the loss of your mother, know it was lung cancer that took her and let all the treatment choices go. It will only wear you out if you try to figure out why.
I do understand your pain though. I'm also a little worried about my mom. She had WBR a few weeks ago, has trouble walking and her memory is not good. She does seem to be doing a tiny bit better everyday so i keep praying she has some good time left.
Take care of yourself.
Kelly

I am so sorry you had to experience this. My mom also had Whole Brain Radiation and suffered a rapid decline shortly thereafter, but that was due to a stroke, and to the tumor growing in her chest that caused a lot of other complications.

My one question for you is did the WBR work? Meaning, did the lesions get smaller or did they continue growing. My mom was resistant to the radiation in her chest (something that does happen) and with her brain lesions, they were so small they weren't affecting her - and they stabilized(didn't shrink, didn't grow.). Is it possible that your mom's disorientation, etc, was due to the lesions growing? Also, WBR causes swelling in the brain as well, so perhaps some of it could be attributed to that?

I frankly don't know enough about it to say whether WBR added to my mom's complications, but it's an interesting topic to bring up, and I'm glad you did. I'm curious to see if others have encountered this,

Again, I am SO sorry to hear about what you and even more so, what your mother had to experience. Lung cancer is truly the absolute worst disease... I wish you much strength and love in this awful time.

Julia xx

Dear Daughter,
I am almost to raw to try to address your discussion. My husband, 49 y/o, father of 5 children (4 of which are teenagers), past away 1 month ago today. He went through a very similar situation, as what you described with your Mom. He was diagnosed 9/13/2007 with Stage III Lung cancer. He started chemo and radiation. By December it had spread to his brain (4 lesions). They did stereotactic. By January it had spread to 10 more lesions in the brain. He started WBR. The docotor said it would reduce him from an A student to a B student. Huh! Yes he had permanent hair loss, but we didn't care so much about that. Frankly, it reduced him to a D student, in my opinion...or perhaps an F student. Becuase he really couldn't even sign his name. By May it had spread more in the lung and into his bones. It was at this time, that he decided, that enough was enough. He felt that he was losing every battle, even as hard as he was fighting, he wasn't winning. He went into Hospice and died at home October 5th. Exactly one year and 3 weeks from original diagnosis.
I just feel that he made all his decisions based on his wishes to live for me and his children. But I knew, early on that if this cancer was beating him, that this cancer was much stronger than he was, and he would never beat it. He was the strongest man I have ever met. But cancer was a stronger beast.
I hope you can take comfort in knowing that your Mom made her decisions on her own free will, and that it was based on her will to live. She tried everything possible to beat this.
It is most difficult after they are gone, because it is so permanent. I thought we were going to grow old together. I never imagined that I would be raising our children without him by my side. I miss him every minute of every day, as I'm sure you miss your Mom.
I hope we both can find peace in the days ahead.

My beautiful wife Rebeca, age 52, died from a hemorage into her lung just 10 hours after completing 15 WBR sessions. She literaly drowned in her own blood.
We will never know all the caual relationships, but It is clear that early detection is the only cure. Unfortunately, the non-smokers who are stricken, frequently in the 45-55 age range, are not scanned for early detecion after the initial coughing spells precisely because they are non-smokers. Never underestimate a persistent cough.
She fought her cancer for 3 years, primarily on Tarceva. We are grateful for each hour that she survived, but believe that a cat scan in time as part of a second or third opinion could have offered her a good chance for a surgical cure.

Some people would have you believe that because their bodies didn't give out after receiving chemotherapy or radiation that these treatments are okay. Cancer patients who die, having undergone treatments which sap their energy, harm their immune systems, or damage vital tissues, are heralded as brave souls. Sometimes it is good for the soul to hear what others in similar circumstances have to say.

The quality of life must be considered as a major decision point in cancer care. That element, so long missing in most clinics, needs to be brought to the fore expecially in the many cancer clinical trials. The quality of life needs to become a major outcome issue for all involved in the treatment of patients with cancer. Mourn the lost of a loved-one, but at the same time, don't be afraid to speak out.

Reading your story, I feel as though these could be my words about my mother and her situation. We sadly lost my mother after a 10month battle in april. I do feel as though the WBR played a huge part in her decline. she was getting stronger, cancer markers in her blood were on the decline. everything the dr. wanted to see......except 3 very small spots on her brain. The radiation was just a precaution, she wasn't feeling ANY symptoms from them. She completed 10 treatments and within 3 months she was gone. It seemed to suck the life that she was fighting for right out of her. I second guess that treatment EVERY day. People are right, we need to mourn our losses but i just can't help but know that the radiation is what help take my mom much sooner than if she had not had those treatments. i wish you peace and i am sure you know as well as i do, our loved ones are all around us yet it does not make the pain any easier.
-n

I am so sorry for the loss of your mother, and understand how you would feel. Even though I am the patient with Lung Cancer, my mother had brain cancer. When diagnosed, they wanted to do radiation and did about 10 treatments.

The doctors originally gave her 6 months to live, but she didn't last quite 6 weeks. That was back in 1996, and even though research has come a long way, it still has a long way to go.

SOME DAY........perhaps the world will be free of this beast, as it has been freed of polio, and small pox. We can only hope and pray. I pray that your pain and heartache lessens in time, but I also know you need to vent and grieve.
***Hugs****
Marylou

NSCLC daughter - I'm really sorry to read about your mother.
My mother also has nsclc and has just finished 5 WBR tx. She's feeling pretty rough today and reading these WBR posts is making me very nervous. Does anyone have any stories where they think wbr helped? Please?
I'm hoping that it was the right call to just do 5 tx.

Dear NSCLC daughter,
I agree with some of the others, Don't torment yourself trying to figure it out, just know that you tried your hardest to help your mom make the best decisions and you were there for her all the way.

I have some experience with FBRT and would like to share it.

My husband was diagnosed on 6/26/08 with inoperable Stage 4 NSCLC with metastasis Brain Tumor (golf ball size). He had Craniotomy on 7/31/08 and the tumor was completely removed. By the time the surgery was done he was already having horrible effects from the tumor. He had headaches; lost peripheral vision on left side; short term memory loss; confusion (couldn't figure out how to put the right shoe on the right foot or which way to put his jeans on); disorientation; diminished comprehension; extreme fatigue; and short of breath.

A few hours after the surgery he looked in the mirror and asked "why is that guy staring at me?". It took him a little while to recognize himself. He would look at the clock, tell me where the hands were, where all the numbers were, but couldn't tell me what time it was. This was his biggest problem, comprehension. He also had lost more of his peripheral vision but overall was improving. Over the next couple of weeks, with physical therapy, occupational therapy and time, he made huge improvements. With the exception of the vision loss he was almost back to his old self. He still had occasional "forgetfulness" and comprehension problems would come and go with stress but everything else was back to normal.

He started 14 days of Full Brain Radiation on 08/18/08 and finished it on 09/05/08 (excluded weekends & holiday). During the FBR he had the "normal" side effects, fatigue, nausea, complete hair loss, and some short term memory loss. The last three or four days of FBR were the worst as far as fatigue, he was napping three to four hours a day. He had been on 4mg Decadron since he was diagnosed and they decided that this would be a good time to "step-down" off of it.

Over the next week, all of the symptoms he had before the brain surgery had returned and the fatigue had become extreme. He could walk to the bathroom and back (about 20ft) without falling in chair-gasping for air. He was complaining of severe pressure on his brain and feeling like it was going to blow out his ears. He was almost completely deaf and complained that everything was dark even though I had put a 150w bulb in the lamp beside him.

On 09/12/08 we were hit by Hurricane Ike, exactly one week after his last FBRT. Because his health had been declining we chose to stay to be close to his doctors and hospital. We were completely prepared with all of the necessities. We lost the carport and had damage to two vehicles due to a fallen tree. We lost power (for 2wks) due to a power line that was down in our backyard but we had a generator that kept a small a/c unit and the fridge going. A few days later we were in the ER, he had a 102 fever and had trouble breathing. He had a slow but steady flow of "lime green" fluid from his left ear and a clear fluid from his right ear. After lots of tests we were told that both ear drums were perforated, he had a severe infection in his left ear, a sinus infection and was extremely dehydrated. They kept him for a few hours to give him IV antibiotics and fluids and we were sent home with antibiotics and Decadron (4mgX2/day).
We were back in the ER the next week with the same symptoms (except fatigue had improved), got the same diagnosis, same treatment, same meds and were sent home.

Since then he has seen doctors who specialize in Vision and Hearing loss associated with Cancer, Neurology, FBRT, etc; and Cardiopulmonary doctors who specialize in NSCLC. Each specialist has done all of the tests they could think of and everyone one of them, in one way or another, related all of it back to the FBRT. None of the doctors would come right out and give us explanations, just that it was likely related.

Looking back at the daily journals I have kept since he was diagnosed I have come to a couple of conclusions about how the FBRT caused all of this. I think it all comes down to an insufficient amount of steroids. Since the beginning I have been told that the steroids were used to reduce the swelling on the brain. They never gave him enough to make a real difference in the swelling. He was never on more than 8mg of Decadron a day and that amount was never more than week.

I may be totally out in left field and this may not make sense to anyone else but it makes sense to me.
* His brain was swollen in the beginning because of the tumor. (Documented in MRI)
* His brain was still swollen when he went into surgery to remove the tumor. (Documented in MRI)
* His brain was swollen after the surgery, because of the surgery. (Documented in MRI)
* I believe his brain was still swollen when they started the FBRT and FBRT causes swelling. (No MRI)
(** He was never given enough Steroids to completely reduce the swelling.)
*The brain swelling can cause fatigue.
*The FBRT can cause fatigue.
*Severe fatigue can cause Shortness of Breath and low Oxygen SAT.
* "On exertion" fatigue and SOB cause low Oxygen SAT.
(**He was put back on Steroids to reduce Fatigue & SOB which would in turn increase O2 SAT.)
* FBRT can cause skin to dry out and peel or flake off.
(**The ear problems were all caused by and started with the FBRT drying out the ear canal. The dried out debris blocked the ear canal and the drainage tubes-built up fluid from brain swelling "blew out" ear drums.
Again all relating back to the FBRT and lack of Steroids)
* Brain Tumor caused Vision Deficit
(**If the swelling on the brain had been reduced enough before and/or after the surgery the Vision Loss may not have been permanent and the FBRT may not have worsened his overall vision)

Is any of this making any sense?
Every time they take him off of the steroids he loses weight, gets dehydrated, becomes extremely fatigued, has SOB and ends up in the ER.

My husband is now in his 5th day of a nine week treatment plan of Chemo for the NSCLC and is doing well. He finished a 3 week step-down of Prednisone one week before his first Chemo Infusion and was given 8mg of Decadron in his Chemo "pre-meds". Needless to say, I am watching him like a hawk and taking every precaution possible. I'm praying that he will continue doing well without a constant dose of steroids.

The vision and hearing losses are permanent so he is getting new glasses and we are trying to get hearing aids but they are $5,000 and the insurance doesn't cover them so that’s requiring a little more time. We now have Oxygen at home and the backpack for when we're out, just incase he gets too tired and can't breathe. We have also acquired a room full of medical equipment with everything from "Pull-ups" to Wheelchairs.

I'm sorry if my reply was too long or too detailed. I hope that some small part of it helped, even if it was just the first sentence.

Prayers to All

I myself don't have experience with WBR. What my friend (whom I met in this forum a few months ago) had been through makes me very conservative about it. She responded very well to the chemo and Tarceva. She even walked 4 miles everyday during her chemo. Her scan in July showed clear in lung (her only had one big tumor). She had a couple tiny mets in the brain. Those mets never bothered her, even after the proof by MRI. Anyhow, she started WBR in September for 10 days. Her physical condition declined since then. The last time I talked to her on the phone was in the end of September. She was very different from herself at the chemo time. I am still shocked and puzzled by her pass.

Hi,
I am sorry for your loss. My husband passed from lung cancer in April. He had WBR last November after he had Gamma Knife. When he passed his brain was cancer free but it was everywhere else. I noticed that after WBR he was dizzy more. He was always nauseated and vomitting. He worked on puzzles to keep his brain as sharp as he could.
I think it really is an awful debilitating disease. I am sorry again for your loss.
Rose

Dear gpawelski,

I always look forward to your posts and I'm very glad you posted on this thread... I read everything you write and find it to be very imformative.

Do you advocate against WBR?

I'm very worried at this point because my mother is scheduled for 10 sessions of WBR and I'm not sure if she will be able to recover from this treatment with a good quality of life vs. it was a rough road through chemo, but she is doing well since chemo has ended and I'd hate to see that diminshed. We know her time is limited, I just don't want to see it cut short.

This whole thread is not hopeful........

That's a tough question to answer. Like Taxol, I've been trying to get anwsers to the whole brain radiation question for ten years now. When they gave it to my wife for the first time, we both looked at each other in puzzlement, why the whole brain?

The reason for giving whole brain radiation is different between a primary brain tumor patient and a metastatic brain tumor patient. Primary tumors are invasive (they are part of the brain tissue and cells), while metastatic brain tumors are non-invasive (they are not part of brain tissue and cells). I do not advocate anyone with a solitary metastatic brain tumor to receive post-surgical whole brain radiation.

During the last twenty years when the preponderance of cancer care shifted from the institution-based, inpatient setting to community-based, ambulatory sites for treating the majority of the nation's cancer patients, many of these community-based settings did not have the cutting-edge high-tech equipment (Gamma-Knife, Cyber-Knife, etc.).

I often thought, was there an incentive for radiation oncologists at community cancer centers to chose whole brain radiation treatments, as these were the most expensive for them? Radiation isn't something that individual doctors buy, as in the case with chemotherapy.

However, a radiation oncologist in Michigan had done some work looking at the number of palliative fractions of radiation given to patients with advanced lung cancer as being a situation in which there is a lot of discretion on the part of the physicians: one fraction is as good as 10, but 10 will reimburse more.

Current clinical practice encourages a more "focused" radiation field that includes only 2-3cm beyond the periphery of the tumor site, as indicated by such cancer institutions as UCLA, M.D. Anderson, and the University of Pittsburgh School of Medicine.

We tend not to talk about cancer patients who died as a result of the treatment. Those stories somehow don't get told. It does happen, but no one emphasizes that point.

New Perspectives on Brain Metastasis

http://survivor-support.rare-cancer.org/forum/viewtopic.php?t=1534&highligh t=

I had 3 mets to the brain, one the size of a small egg, one nickel size and one penny size destroyed by GK. I was strongly encouraged to have WBR but, refused 8 years ago.

I felt, and still do, WBR causes more damage than it's worth. I feel WBR should be used in mets greater than 4-6 total.

G

my first oncologist tried to bully me into wbr. I said no. I had originally been dx with lc because of 1 large brain met that was very succesfully removed 2/13/08. My new onc said I only needed to have the tumor bed radiated. I did that. Now I am not sure I should have done even that. There have been no side effects from that of which I am aware. New scans 12/29/08.

My mother has no mets nor tumor to the brain. The WBR is solely preventive.
Any advice?

Your mother's onc suggested WBR?

I agree with what G and Ramona did. And somewhat like jyuan's friend, a medical doctor (who posted his experience on the American Cancer Society's website back in 2003) with stage IV NSCLC had a lymph node removed to provide a sample for assay testing first, to see what drugs where synergistic (cooperative) to his individual cancer cells.

He was going to have Gamma-Knife on his solitary brain met. However, the novel drug therapy he received from the assay analysis, was so successful, there was no detectable active tumor and didn't need to have any radiation. His original medical oncologist was going to give him the standard Taxol + Cisplatin, however, the combination showed inactive (resistance) in the assay. What showed active on the assay was Gemzar, Carboplatin, Navelbine, high dose Tamoxifen and Iressa. After 4 cycles, his Pet Scan was clean.

From who-me's profile page, your mother has SCLC (not NSCLC). SCLC is intrinsically sensitive to chemotherapy. SCLC is one of the very few forms of carcinoma for which chemotherapy has some positive effect on survival. You'd think that if it is so sensitive to chemotherapy, then why prophylactic whole brain radiation (PCI)? Well, SCLC is also very aggressive, tends to metastasize readily and grow rapidly.

Recurrences are much more difficult to treat (empirically). Brain metastases are common, hence the use of PCI. PCI is supposed to come in safer doses than normal whole brain radiation, but when to use it is controversial. Patients who are candidates for whole brain radiation are selected because they are thought to have limited survival times of less than 1-2 years, before the effects of radiation necrosis would show up.

Several studies in the '90's convincingly showed there was no survival benefit or prolonged independence in patients who received whole brain radiation therapy. The efficacy of this kind of radiotherapy has not been established. The most interesting part of the studies were the patients who lived the longest. Patients in the observation group who avoided whole brain radiation had an improvement in survival.

It makes me wonder, if they radiate just the whole brain but not the spinal cord, how does PCI benefit the patient? Any theoretical cancer cells in the spinal cord would eventually infiltrate the brain.

The problem of penetration of chemo into the CNS is not as nearly as severe for small-molecule drugs today. Large molecules cannot permeate through the narrow spaces, however, fat soluble (lipophilic) molecules can dissolve through the capillary cell membranes and are absorbed into the brain. A few brain diseases consistently respond to lipid-soluble small molecule drugs.

Add to the discussion

New user? Join here.
Forgot password?
Keep me signed in on this computer until I sign out

Search

Find information and discussion about health topics in 346,453 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 87,355 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...

You