Brain Mets with Ext SCLC...WBR??? What to expect - 1248923

petunia
Posts:12

So, unfortunately the MRI came back with mets to the brain. She was dx in February of this year and completed 6 cycles of chemo with good results. Had a brain MRI done 3 months ago that was clear. Now it is not clear. There are mets all over her brain. We have to go for WBR. She has been having horrible headaches so that is why we went to the Dr. and asked to push the MRI up. She has also been very, very forgetful. Forgetting things that we just talked about. I know I have written before for advice on pci but can anyone give information on WBR? The doctor said to be on the lookout for seizures. Does anyone have any experience with this? Does the forgetfulness go away? Can anyone share of their, or someone they know, survivor stories? Can she survive after brain mets? I have been positive, however, it is very difficult to watch her be broken. She is not only physically broken, she is also mentally broken ,and I do not know what to do to fix her.

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Reply # - October 10, 2012, 09:36 PM

laya d.
Posts: 714

Petunia - -

I'm so sorry about the newly discovered brain mets. Hopefully, the WBR will get rid of them. I can't comment on the forgetfulness issue, but hope that once the radiation gets rid of the mets, the issues she has been experiencing all resolve. And patients do survive after brain mets have been dealt with. In fact, the whole point of WBR is to treat and get rid of the mets so that she can have a better quality of life.

Wishing you both all the best. . .

Laya

Reply # - October 10, 2012, 11:06 PM

Dr West
Posts: 4735

I'm very sorry to hear about the widespread brain metastases. In this situation, whole brain radiation is the overwhelming leading consideration. There is some risk of cognitive problems, but the data actually show that this can improve, and the alternative of not treating with WBR is very likely to be far, far less attractive, I would say. Here is a link to a good discussion of the management of brain metastases:

http://cancergrace.org/radiation/2011/04/29/dr-minesh-mehta-radiation-o…

Good luck.

-Dr. West

Reply # - October 11, 2012, 12:34 AM

certain spring
Posts: 762

Petunia, I am really sorry to hear about your mother. I understand a little about feeling mentally broken, as I had multiple brain mets on diagnosis and the fear was terrible. But you did the right thing in asking for an MRI - the sooner your mother has treatment, the better.
Essentially WBR is the same as PCI, and the effects are the same - hair loss and tiredness that kicks in after a time lag of some weeks. When I say tiredness, I mean something on a bigger scale than everyday tiredness. I slept for several hours in the daytime for several weeks. The other alarming thing is that the treatment can sometimes "stir up" the symptoms by causing inflammation (hence the steroids that your mum will probably be given). So she might get a recurrence of the headaches early in the treatment - but you should not assume that means it isn't working.
WBR has worked well for me. I do forget things sometimes, but I put it down to middle age. I would say the main thing I have noticed is sequencing problems (the equivalent of going into a room and thinking "What did I come in here for?")
It would be great if you could do a forum profile for your mum, as on the old site, so we have her age and history. You go to the forum signature box (not "Biographical Info") on your Profile page (accessed via your avatar or your user name).
http://cancergrace.org/topic/grace-site-tips-profile-bio-forum-signature
best wishes to you and your mother.

Reply # - October 19, 2012, 09:07 PM

petunia
Posts: 12

So much has happened since the last post. My mother's headaches got worse and by the 13th (Saturday) she was in bed with horrible pain. The next day,on Sunday, she was barely able to eat or get out of bed. Monday was her first day of WBR and we could not wait for this to make her feel better. Boy were we wrong. I heard that it gets worse before it gets better but wow they were not kidding. She went for her first session of WBR and she did not respond well at all. She came home that day and was throwing up because the pain was so bad. Her balance was so bad that she was unable to walk and in the middle of the night she had a grand mal seizure in my arms. I called 911 and we ended up taking her to the emergency room. She has been in the hospital since. She is finally getting better, however, it is so scary how quickly things can change. On the 12th we were out to dinner having a great time and now here it is a week later and she is just learning how to walk on her own again. The dr. said that even if she did PCI, the brain mets were probably already there. He described it perfectly: The cancer is very content in her brain and wants to stay. The radiation comes in and pisses the cancer off (and her cancer was already pissed off prior to WBR.) The cancer and radiation are now fighting in her brain because one wants to stay and the other wants it out. This fight has nowhere to go so it puts pressure on the brain. Finally one of them wins and the pain eases up. I am hoping that the radiation won and that is why my mother's head is feeling better. They also increased her dosage of dexamethasone and put her on Keppra (an anti-seizure drug,) She has also been on Zofran. Her balance has been getting better with each day and she is now able to walk with a walker. We are hoping she will come home in the next day or so (I have not left her bedside and have "set up camp" next to her hospital bed.) This disease is just so unpredictable.

Reply # - October 20, 2012, 01:00 AM

certain spring
Posts: 762

I'm sorry for your mother, that's horrible. Those symptoms are characteristic of brain mets. The WBR can cause inflammation that puts more pressure on the brain, hence they get worse, as you say. The dex should help with that, although it can cause agitation and sleeplessness. Hang on in there. I posted above (October 11) about what your mother might expect.

Reply # - October 20, 2012, 11:22 AM

Dr West
Posts: 4735

I agree with certain spring. I'm not sure how much of her recent problems are from the WBR exacerbating her headaches and other neurologic issues vs. just the momentum of the brain mets until the radiation kicks in, but it's true that the radiation can increase inflammation and therefore make things harder. The dexamethasone (Decadron) can ease swelling from the metastases, the radiation, or both, and often improves the symptoms.

I certainly hope things get easier. Good luck.

-Dr. West

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