Starting WBR for brain metz

KsGal · 12-26-2012, 10:42 AM

Well, I had asked my oncologist about getting an MRI of my brain just to check three months ago, and he said he basically would wait for symptoms to do any scans other than my regular CT abdomen and pelvis.
Soooo...on Saturday I got the worst headache I have ever felt in my life, and ended up in the ER. By the time I got processed through the ER and transported to a different hospital, etc, etc, they had basically decided to put me on comfort care and let me go. Seems from the MRI I have five brain lesions, one that is putting pressure on my brain stem. Every time the pressure flares up, my heart rate drops down in 20s and 30s.
They called in a radiation oncologist, who put me on some massive steroids and morphine, and they seem to have it somewhat under control. I just had my second whole brain radiation, and they are hoping that this will bring it down and whatever is left they can cyberknife...
I felt fine right before this, so it was a pretty big shock to the system to wake up in the neurological critical care unit and find out I was supposed to have passed on the night before according to the doctors.
Im doing well enough today they have let me return to my home. Once the steroids kicked in pretty well, the pain is basically gone and Im not having the symptoms caused by the swelling.
I know many of you have had WBR and it worked well, so I am optimistic, but still really scared that everything got so bad so fast.
I just wanted to keep everyone updated, and ask for any prayers you might be able to send my way. Lots of love to you all, and prayers and positive energy.

NEDenise · 12-26-2012, 02:31 PM

Oh my Dear God!
You poor woman!
Prayers and healing energy heading your way even as I'm typing.
Better things are coming in 2013...count on it!
With love,
Denise

Paty · 12-26-2012, 02:49 PM

Praying for you, wishing you wellnes and sending you hugs. Hoping wbr keep lesions out.

Much love to you,

Paty

KsGal · 12-26-2012, 03:38 PM

Denise, you were the first person I thought of when this happened to me. I remembered your posts not that long ago about what a shock it was, and how you felt fine. It really is inspiring to me that you have done so well with the cyberknife. Im keeping my spirits up as much as possible! Im seeing my regular oncologist in a few days, and Im going to ask for Tykerb to add to my herceptin to try to get this every way possible.

KsGal · 12-26-2012, 03:48 PM

By the way everyone, my tumor marker was only a 19 with five tumors in my brain, so please do everything you can to get your brain scans because we all know the herceptin leaves the brain unprotected.

Sandra in GA · 12-26-2012, 04:06 PM

I am so sorry you are going through this. I am praying the WBR takes care of the lesions.
Sending lots of hugs and love,
Sandra

Pamelamary · 12-26-2012, 08:09 PM

So sorry to hear your news. At least you have started treatment quickly, and I have heard of good results from WBR. Sending positive thoughts from Australia, and wishing you good outcomes in the new year.
Pam. XOX!

conomyself · 12-26-2012, 08:16 PM

I'm so sorry to hear this, Ks. I know the treatment will take care of this for you!

I was wondering about this. Before I came on this board just now I was thinking about my appt with my onc two weeks ago, because I'll be on just Herceptin. I asked him about brain scans and he said he'll wait for symptoms. I told my husband I didn't know if I agreed with that. Then I wondered if my tumor marker would catch something...I guess not necessarily...I'll press it more now.

My prayers are with you. You'll beat this!!

NanaJoni · 12-26-2012, 08:42 PM

Praying for you, KSGal.

Pray · 12-26-2012, 10:02 PM

Please know that I am hoping and praying these treatments take good care of you. Gods blessings to you and your family. Peace my friend

dchips1 · 12-26-2012, 11:05 PM

have oncologist add Tykerb. Been there as well, take care prayers headed your way

Darita

michka · 12-27-2012, 03:19 AM

It sure is a shock. I am so sorry this is happening to you. But stay strong. Many other sisters did well after WBR and Cyberknife. I am sending hugs and strength. Michka

Hopeful · 12-27-2012, 07:49 AM

I am so very sorry that this happened to you. I was reminded of an article I posted last month, about a drug that preserved brain function after WBR: http://her2support.org/vbulletin/sho...eferrerid=1173

Best of luck to you with your treatment.

Hopeful

Mel3 · 12-27-2012, 08:55 AM

My thoughts and prayers are with you.

DeenaH · 12-27-2012, 09:09 AM

I'm praying too! I am also right there in the boat with you. I was dx with brain mets 2 weeks ago. Did gamma knife last week, but what had been 4 tiny tumors turned to be more than 10, so I started WBR yesterday.

It shocks me how many doctors don't order brain MRI's. I was getting them every 6 monts because I am HER2+. But, it was because I asked for them, not that my doctor just orders them. My routine MRI was totally clean in October, but then 4 small areas of foci showed up on my PET/CT 4 weeks later. It was enough to order a repeat MRI which sure enough showed 4 small mets (all under6mm). That was 6 weeks after clean MRI! A week later when I was there for gamma knife, the super contrast MRI showed the largest tumor was 9mm, and there were 10+ of them. They zapped 8. Those suckers came on fast! I have been on Tykerb for 2 years now, and in sept had to stop for about 3 weeks due to severe diarrhea. I believe that is how this happened. I will never stop my tykerb again!!

Kellennea · 12-27-2012, 09:46 AM

Keeping you in my prayers. So sorry this is happening

jml · 12-27-2012, 10:38 AM

Ugh, Karen!
I'm so sorry! But so glad you're feeling better, but hate that you had to go through such a scary experience. Brain mets are scary enough on their own!
I did 15 rounds of WBR back in February for 8 lesions in my brain, one of the largest was in my brain stem, but I was virtually asymptomatic. I had 2-3 occasions when I felt a little 'earth shift'- but otherwise no symptoms. A brain MRI 8 weeks earlier showed a single 2mm spot in the same neighborhood where I had Novalis for a single 4mm spot 18mos prior,but that was it. I was shocked to go from one 2mm spot to 8 spots, with a large one in my brain stem in only 8 weeks. But I guess it's always a shock to hear that this monster has invaded your brain.
The WBR was tolerable, though lost my hair for the 4th time ~cycle 5. I could just rub the hair off my scalp, already so short from having lost it 5 months prior & just beginning to grow back, or pluck it out with my fingers. It's growing back now again, but after 8mos. It's very thin, dull and slow to grow, & too short & thin to wear without a hat in this cold weather, but hair none-the-less.
I found the decadron (steroids) a necessary evil. I just felt OFF on that drug- hungry, aggressive, moon-faced- but there's no getting around it, so you take the drug & manage the side effects as best you can...Don't we always?
The good news is the one month post-15-rounds-of-WBR MRI was clean. Totally clean! No waiting 3 months to see full effect of rads. And by the grace of God, it has remained so ever since. I pray so hard it stays this way.
Hold on to your hope, optimism & faith and know that rads will shrink & decimate those lesions! Stay strong, hydrated,well-rested and you will get through this. I continued to teach Pilates classes & clients during WBR, but was careful to not over-do it.
Take especially good care of yourself right now & Keep the Faith~

Jessica

KsGal · 12-27-2012, 10:57 AM

Thank you all so much for the prayers and positive energy and just...support. I love the support my family and friends give me, but this is really the only place I can come that makes me feel like you "get me" and you understand how it feels to BE me, because there is always someone to identify with what you are going through, who has been there and done that.
Deena, I had gone to the onc on Wednesday and told him I was having some pretty intense stabbing type headaches, and he had scheduled me for an MRI in about 10 days. Before that at my last scheduled appointment I had asked for one just because I was year out from diagnosis on herceptin, and knew it left my brain kind of hanging out there with no protection. He had told me then we would wait to scan any other areas until I had symptoms. This of course scared me because when Denise was scanned she was feeling fine and turned out to have brain mets as well.
I think I am just lucky that the radiation oncologist they called came up to the hospital and decided to give it shot. Before he had arrived, they had told my family I had a tumor in my brain stem, and there wasn't much they could do at that point besides comfort care. This doctor tells me there is not a tumor in my brain stem, and he had it overread by someone else just to make sure. But it was the swelling, and I seem to be responding to the steroids quite well. I have an appointment with my regular oncologist Monday, where I am going to insist on getting Tykerb.
More than anything I hate putting my family through all this. My kids don't have a father, and although they are grown for the most part, my youngest who lives with me and goes through the brunt of the emotional rollercoaster is only 18, and its a lot to handle for anyone.
Jessica...thank you so much for responding. Your story gives me so much hope and courage. I, of course, did the bad thing and came home and researched the effectiveness of whole brain radiation. Why, oh, why do I do those things? I am more than determined to get this under control, I am excited to complete it and move on with life.
I know I haven't been on this board as long as most of you, but I do want you all to know that I genuinely care for all of you and I pray for you and I feel a bond with you all. I thank God that this place is here....big hugs all the way around.

Joan M · 12-27-2012, 12:22 PM

I'm sorry that you had to go through that, especially when you asked for a brain MRI, but thank goodness the radiation oncologist was on top of it.

I too asked for an annual brain MRI after the bc spread to my lung in 2007. My excuse: the probability of getting a brain met when you're diagnosed with HER2+ bc is approx. 35%. The first scan didn't show anything, but the second one 16 months later revealed a 2.6 cm tumor in the left front lobe. I also had no symptoms.

I had a craniotomy because the radiation oncologist felt the tumor was too deep for just one shot of Cyberknife. After the surgery, I had 5 targeted shots of radiation to the tumor bed. I've had nothing in the brain since the surgery in October 2008.

It seems like we have a similar story, except I had only one tumor in the lung, rather than the liver. I decided to try local treatments to get rid of it. First a lung wedge resection (surgery) in 2007 and then when it recurred in the same area in 2008, I then had RFA in August 2008.

I now get CT scans of the chest, abdomen, and pelvis. In general, PET scans only light up when a nodule is about 1 cm (10 mm). So, if something is smaller than that on CT, it's good to check it out again in a few months.

I'm praying that all will be well after your treatment.

Joan

'lizbeth · 12-27-2012, 12:51 PM

Whoa . . . I'm so sorry KsGal - about you experience with the brain mets. Asymptomatic to major issues, that just scares the bejesus out of me!

That just tells me how spot on intuition can be. You suspected you need the scans and you did.

I'm sending up prayers for you right now. I'm so amazed at how well you are doing. You are another Christmas miracle! Looks like we'll be needing another Unicorn for you as well.