Hello,
My mom was diagnosed with breast cancer in 2009, at 58, with a few positive lymph nodes. She went through surgery, radiation and chemo, and we all thought she was cured. This summer, after experiencing some mild headaches and vertigo, she had an MRI/CT and was diagnosed with what both the neurologist and neurosurgeon said was a meningioma. She had a very successful surgery to remove the tumor (egg-sized, easy removal, no tentacles, surgeon sure it was a meningioma). Unfortunately the pathology came back positive for a breast cancer met. Everyone, including the Dr.s, were surprised. She has since undergone scans, and there is NO evidence of cancer anywhere else.
As per the radiation oncologist's recommendation, she underwent WBRT, with a boost to the area where the tumor was. I'm not sure of the dose, but she had 20 radiation treatments, in 4 weeks time. During the first week of treatment she became increasingly fatigued and nauseous, and by the end of the WBRT she was so fatigued that she could only stand up for a few minutes at a time (no steroids Rx'ed) She had her last treatment one month ago, and is still so fatigued and nauseous that she sleeps 12 hours at night, and doesn't really leave the house. She can hardly eat anything, but does not vomit. She is terribly discouraged and frustrated. Before this, she was perfectly healthy and vibrant, exercised frequently, and had a full and active life. Now she is practically incapacitated.
Is this a typical reaction to WBRT? How long can we expect this fatigue and nausea to last? She has an excellent short-term prognosis as there is no evidence of any cancer at this time. We are anxious for her to start living what life she has left!
Tremendous thanks in advance!!!!
Reply # - November 6, 2013, 08:57 PM
Reply To: WBRT Extreme Fatigue/Extended Nausea
This is absolutely not a typical reaction to WBRT, but patients often have a transient decline and then recover over several more weeks to a few months. My leading fear when hearing about someone doing surprisingly worse than expected with a profound decline is the possibility of leptomeningeal carcinomatosis (LMC), which is cancer cells in the fluid bathing the brain and spinal cord. This can sometimes be seen on a head MRI, but the most conclusive test is a lumbar puncture (spinal tap), where fluid is removed from the middle of the back and tested for cancer cells.
Good luck.
-Dr. West
Reply # - November 6, 2013, 10:18 PM
Reply To: WBRT Extreme Fatigue/Extended Nausea
Thank you SO much for the reply Dr. West. Do you think she would be at an increased risk of the Leptomeningeal Carcinomatosis because of the location of her tumor (meninges)? The neurosurgeon was very surprised when pathology came back- he thought he removed a typical meningioma.
I read about LMC, and while some of the symptoms fit her perfectly, I am thinking (well, hoping, really) that it may not be LMC because the symptoms started with, and increased as the radiation proceeded, and she hasn't gotten worse in the month since the radiation ended. I am thinking if it were LMC she would be continuing to decline instead of just not improving.
In any case, I will consider very carefully what you have said. I am not sure that any good can come from even mentioning this possibility to her at this point. I know she wouldn't want any of the treatment options mentioned for the LMC. I will keep it in mind though, and if she doesn't start to improve soon, I will urge her to get the lumbar puncture. Thank you SO much for providing this incredible service to total strangers! It must truly be a labor of love for you.
Reply # - November 7, 2013, 06:05 AM
Reply To: WBRT Extreme Fatigue/Extended Nausea
You're right that you'd expect her to decline further if it were LMC, though it can be variable. I only mention it because any time you have someone with known cancer in the central nervous system who is experiencing a marked decline in performance status, it's certainly a possibility. But a marked and fortunately temporary decline in cognitive function and performance status can also happen after WBR, as Dr. Minesh Mehta describes in his discussion of management of brain metastases:
http://cancergrace.org/radiation/2011/04/29/dr-minesh-mehta-radiation-o…
Good luck.
-Dr. West
Reply # - November 15, 2013, 05:31 PM
Reply To: WBRT Extreme Fatigue/Extended Nausea
My husband just finished WBRT 10x this past Wednesday. Brain mets, lung primary. He has been getting increasingly fatigued. Beyond fatigue sheer exhaustion. The steroids (dex) has been taking its toll with him not being able to sleep (tapering off now) and caused muscle loss, no eight gain at all. Has difficulty walking from muscle loss. Last two days he's been catching up on that lost sleep but he's so exhausted it's an effort to speak. The doctors said this will get worse before it gets better. He can walk (shuffle) to the bathroom and I stand by him on the stairs. He's out of breath from the cancer and now he also pulled a muscle in his side so that makes him not want to walk. This hurts to watch a once strong man now need help to shower. Chemo won't start for another two weeks. But will this weakness and exhaustion really pass? I know if I put him in the hospital he will curl up and die. He also doesn't want to go to the hospital. Hoping to see a little improvement tomorrow. Also he won't eat so all I can get into him is Gatorade and his meds. I am stressed out!
Reply # - November 15, 2013, 09:32 PM
Reply To: WBRT Extreme Fatigue/Extended Nausea
I'm sorry it's been such a struggle. It's quite uncommon for people to become this debilitated from WBRT, though harsh side effects are more common with a shorter course of 1-2 weeks compared with a longer course like 3 weeks, or occasionally longer. Side effects do typically improve after a few weeks, but in someone with a cancer metastatic to the brain, it can be hard to separate issues related to the underlying cancer from side effects of treatment.
I certainly hope he's feeling better soon.
Good luck.
-Dr. West
Reply # - November 15, 2013, 10:20 PM
Reply To: WBRT Extreme Fatigue/Extended Nausea
Certain Spring always explained her experience with wbr and fatigue so well. In one post she says, "I can only offer my own experience. I had WBR on dx, aged 46. The fatigue peaked at 6-8 weeks after the treatment ended. I slept for several hours each day, usually from about 4-6pm. I guess everyone’s definition of “extreme” will differ, but that was extreme by my standards. I could not read or concentrate, and I certainly didn’t want to speak to anyone on the phone." http://cancergrace.org/lung/topic/side-effects-of-wbr/#post-11179
I can imagine how you feel cyweski. My husband was that sick a couple of years ago and it's that stressful. We were talking this morning how I used to put bacon or bacon grease on 90% of everything I made and think it contributed greatly to getting back some weight management. However he's still extremely thin he's doing alright, or really well depending on your perspective. We even had fresh eggs with bacon and toasted tortilla for dinner. If y'all are vegetarian this isn't very good advise but if not...
Also, Ensure Plus protein shakes are palatable for some and is packed with calories.
I hope he feels better soon,
Janine
Reply # - November 15, 2013, 10:45 PM
Reply To: WBRT Extreme Fatigue/Extended Nausea
Thanks for the responses folks. He struggles so just to sit up and sometimes stand. I have made the decision that he shows no improvement or is worse in the morning, I will have no choice but to put him in the hospital. Not that I want him on life support but I do need someone to help determine what's going on here. Letting him sleep through the night for now.
Reply # - February 10, 2014, 09:01 AM
Reply To: WBRT Extreme Fatigue/Extended Nausea
When should a patient expect to not have any symptoms post wbr? Is feeling a bit unsteady, mild headaches and nausea expected 5-6 weeks out?
Reply # - February 10, 2014, 09:33 AM
Reply To: WBRT Extreme Fatigue/Extended Nausea
Symptoms certainly can linger for a while; my wife experienced a great deal of fatigue for months after her WBR. On the other hand, it's never a bad idea to check in with your oncologist and report the symptoms.
JimC
Forum moderator
Reply # - February 10, 2014, 09:56 AM
Reply To: WBRT Extreme Fatigue/Extended Nausea
Thanks Jim for your response. My mom has contacted her radiation oncologist and he has suggested to start on another two week course of dexamethasone. I wanted to make sure we were not dismissing symptoms that could be indicating active brain lesions. I guess if her nausea and headaches are not controlled by the steroids then this might indicate the radiation did not work? Could the unsteady feeling be her new normal? She is still able to function well. Most days she walks a mile, sometimes more, for her exercise. Some days she feels like she needs to hold onto to someone while she walks. The not knowing, to me, is the worst part of this journey.