Brain Necrosis - No Add'l Treatment - Your thoughts

krisvell · 06-13-2011, 05:24 PM

Hi all;
It's been a nerve wracking week for me. Last Monday, the latest MRI showed the tumor went back the original size. So the 75% reduction is now gone. Bummer! The Neurosurgeon thought it was necrosis but had me go for a head PET and MRI Spectropy (sp).
This came as a huge surprise as before I went with the Gamma Knife, the radiation oncologist said there was a 1% chance of getting necrosis and they were going to do the gamma knife in two session to minimize the risk. Especially being in the brain stem, I don't have a lot of room for extra stuff. So be it for statistics.
The neurosurgeon's nurse called me back and I got the better of the news (possibilities were re-growth or necrosis); they said it is necrosis. The PET scan was inconclusive but the MRI shows it's radiation effect.
So I am relieved a bit.
So I asked about taking something to make sure the necrosis stops and she said they don't give anything unless I get symptoms. That scares me. I'm kind of in a prevention mindset. I asked about Avastan and she said that I could get a bleed into the brain. Well that was scary to hear.
I also read about Boswella. Also, the hyperbaric chamber.
Should I get a neuro-oncologist? I have a medical oncologist that I really like a lot. She sent me to a neurologist but he just gives me a neurological exam the same that the neurosurgeon does.
I'm also thinking about going back to Memorial Sloan to the 2nd Opinion Oncologist that I saw in April.
So for now, I am not taking anything... Still in a watch and wait mode.
I would appreciate any thoughts you may have.
Kris........

chrisy · 06-13-2011, 05:55 PM

Wow Kris. nerve wracking? Really? You are the queen of understatement! One strong and smart cookie.

I know some of the brain metsperts (I just made that word up) will chime in. StephN has done the brain mets necrosis dance, and of course Brenda has done it all. But I do know it's scary to be on "no treatment" .

Still, it sounds like relatively good news for the time being. I think your idea of consulting a neuro oncologist or another opinion is smart. You are dealing in, for you, uncharted waters and having the most expert opinion will help (either with a different perspective, or to give you confidence in the direction you are going now)

Hang in there!

Much love
Chris

Pam P · 06-13-2011, 06:54 PM

Kris - I thought necrosis was a good thing but I guess not if it's large enough to interfere with healthy tissue. I better learn more about that. I do hope you get a 2nd opinion so you can get the best answers and a clear direction for future treatment Sending you support and prayers. You are a strong woman, a fighter, and a great advocate for yourself. Pam

Sandra in GA · 06-13-2011, 07:16 PM

Hi Kris,
I am so sorry you are having to go through all this. Like you said, necrosis is much better than regrowth. As I understand it, with time your body should resolve this. I do agree with Chris about getting a second opinion. This should help relive some of the stress you no doubt are feeling. Please know you are in my thoughts and prayers as you work your way through this new challenge.
Lots of Hugs,
Sandra

CourtneyL · 06-13-2011, 07:17 PM

Yes, sounds like its time to bring in the experts. I think a consult with a neuro-oncologist is a great idea. I haven't dealt with necrosis issues myself so I am uninformed about the risks. Taking Boswellia might not be a bad idea. Its a natural anti-inflammatory. I took mega doses of it for several months last fall with no ill side effects. It didn't stop me from getting new brain mets but I never had to go on steroids either. Perhaps that had something to do with it. My heart goes out to you, Kris. You've been through so much lately, my dear. Stay strong and know that this is just a bump (albeit a big one) in the road. I see smooth sailing ahead for you...

CoolBreeze · 06-13-2011, 07:42 PM

I am clueless about any of this - but I do know that the more experts involved, the more choices and knowledge you have. So, why not get a second opinion?

ElaineM · 06-13-2011, 08:59 PM

I know nothing about brain problems.
That said (or written) I think going for a second opinion is a good idea. Getting information from another doctor "brain" when we are at a crossroads is usually a good idea. Also if you go to Memorial Sloan Kettering you might be able to talk to someone there about Boswella and/or hyperbaric treatments, because I think they have some staff members who are familiar with complementary treatments. I also wanted to offer my support and let you know I have my fingers crossed for you.

Elizabethtx · 06-13-2011, 09:27 PM

Kris,
Glad you finally posted and updated your status. It sounds like better news than progression! Sounds as though you have had minimal side effect from the treatment, so as long as the necrosis stays stable, you are good. I am voting for the second opinion also! I am praying for clear guidance and quick, permanent recovery! Take care and stay strong.

krisvell · 06-14-2011, 05:15 PM

Thanks all for the suggestions. I am going to look into the Boswella and get another opinion about further treatments. It's frustrating with all there is, there's not much out there for Brain Mets for me.

Kris....

SoCalGal · 06-14-2011, 06:06 PM

Gosh - I am going thru a very similar thing - EXCEPT my MRI spect'y thing came back INCONCLUSIVE. OMG RU FKM? (I asked my oncologist). I am waiting to hear the weigh-in from the rads oncologists and also the brain surgeon. My onc said that one can have necrosis at any time and if not symptomatic, and if the necrosis is not getting bigger (eventually will create symptoms, I guess) then you can watch and wait. I am watching and waiting - don't know exactly WHEN the rocket scientists will decide to re-scan me to find out if it's one or the other. For me, if it's the same stupid met, then I will "just" (as in merely, right?) re-gamma.
In the meantime, I find it super-easy to resume my life as if I didn't have stage four cancer whatsoever (don't get wet from my dripping sarcasm).
Hang in there!! Love, Flori

BonnieR · 06-14-2011, 06:57 PM

Kris, I am not any help either except to agree that more opinions are always a good thing. Even if the input is contradictory, I think we learn from every different contact we have. Something will click.
I am one of those people who always is cautious about taking any sort of supplement without running it past a doctor first. Something seemingly benign might be contraindicated under certain circumstances.
and it was good to see Flori chime in. Although I did get a little wet!
Keep the faith everyone.

Jackie07 · 06-14-2011, 09:14 PM

Kris,

Glad they've confirmed it's 'just' necrosis. From my own experience, treatment related to the brain is always weighed against the possibility of more harm than good.

If it's not causing problems, I think most doctors will say 'don't touch it'. That's why I end up living with 5, 6 tumors inside the ventricles in the center of my brain. I have a bottle of 600mg Ibuprofen and a bottle of Hydrocodon. The radiation oncologist said that she'll give me a new prescription if I need more...

Joan M · 06-14-2011, 09:42 PM

Kris,

I recommend a second opinion with a neuro-oncologist, preferably in a place that sees a lot of patients with brain cancer or mets.

In October 2008, I had a craniotomy followed by five dosages of targeted radiation. After the treatment, the area looked normal, but after about six months, each 3-month MRI follow-up scan began to look more and more enhanced, and the radiologist's impression in each of these reports said they couldn't rule out regrowth.

Finally, the neuro-oncologist (who I have been seeing since a few months after the surgery), ordered in January 2010 a brain PET which turned out to be normal. That is, the scan did did not show any difference in metabolic activity in the treated area than in the rest of my brain. He said that with cancer it's hard to say 100 percent, but that he was 95 percent sure it was scar tissue (that is, necrosis), and not regrowth. The neuro-oncologist also said that scar tissue can sometimes cause a brain PET to light up and if that had happened, it would have been hard to tell the difference between regrowth and necrosis, and then surgery might be necessary.

I believe that is what happened in Steph's case. She had targeted radiation initially but eventually the doctors decided to do a craniotomy to rule out regrowth. They found only necrosis. But as Chris mentioned, Steph can give you the specifics.

Why was your brain PET inconclusive? Did it light up? What was the radiologist's impression in the report.

Joan

Trish · 06-14-2011, 10:58 PM

Lots of good advice there. I'm hoping the necrosis won't continue to develop and so what you have is what you've got. I know your symptoms are troubling but you do seem to be coping remarkably well. Thinking of you,
Trish

Kavy · 06-14-2011, 11:45 PM

Kris,
I knew it was going to be necrosis, and I'm happy for you that is not tumor growth. Now we need to pray that it is going to shrink again, or stay that way.
I think you should have a neuro oncologist in your group of doctors. As you know, I just got one, and he is suggesting things that the other doctors did not even think about. Maybe your neuro oncologist will give you something that cross the blood brain barrier. A second opinion is always good idea as well.
As for boswellia, it might help. I do not know much, but after reading the article, I felt like taking it as well.
Sending lots of prayers, and a big hug,
Love,
KarlaV.

michka · 06-15-2011, 12:29 AM

Kris, I know nothing about brain necrosis. I don't even know if I have a brain myself! But I am so happy it is not tumor growth. Now get another opinion. Sending hugs and love. Michka

KDR · 06-15-2011, 09:26 AM

Hi, Kris,
I'm so happy for you right now! I think it would be a good idea to go back to MSKCC for a second, then maybe a third, for sure. You'll get there, I know you!
Love,
Karen

kiwigirl · 06-15-2011, 12:52 PM

Hi Kris I've just chimed in on your post. I take boswellia and other liquid herbs. I have to go but will send you an email later. Take care

Luv Jacqui xx

krisvell · 06-16-2011, 02:12 PM

All,
Thanks for all your suggestions and support.
Joan: PET resport showed uptake and suspicious but saw post radiation inflammation. suggested follow up.
Flori; I can't believe you are going thru the same thing.
Jacqui; looking forward to hearing from you.
I'm working on a setting up the 2nd opinion and neuro-oncoogist.
Hugs,
Kris.....

GracePang · 06-17-2011, 02:52 PM

Hi Kris,
I am also experiencing the same thing. I had Gamma Knife in January and the May MRI showed some increase of the tumor with inflammation. My nerosurgeon said he hoped those are the post radiation effects and will go away eventually. He scheduled a followup MRI in August. Basically, he said wait and see. I am taking Boswilla now on low dosage (maybe I should boost it a bit). Love, Grace