Help! Brain mets besides lung mets

[Kavy]

Hi, everyone,
I'm having surgery this week, and prayers, good vibes and good thoughts are welcome.
Thank you so much for your support. I'm blessed to be part of this family.
With all my love,
KarlaV.

Stephen, please read my answer to Kris thread, I explain why they want to do surgery.
Grace, I'm glad you are done with Gamma knife, that is what I wanted to do from the beggining. I hope you will get xeloda as well.
Joyce, I'm very happy your daughter will get xeloda with Tykerb, and I pray this combo will work for her.

[Trish]

You certainly have my very best wishes and I will be thinking of you often this week. I read your plan in Kris's thread and it sounds like a really carefully reasoned one to me. I'm hopeful things will go well.
Trish

[schoolteacher]

You are in my prayers. Hope to hear from you soon.

Amelia

[Pam P]

Prayers and all good wishes for you plan of treatment. Will be watching for good news from you.

[krisvell]

Kavy,
First, I wish you the best success with your surgery and gamma knife. You'll be paving the wave for me. I wish we could hold hands and do it together. I guess we are virtually.
Sending hugs and prayers your way.

Kris...

[CourtneyL]

Hi Karla - From one brain mets survivor to another - I am holding you to the light and praying for an amazing outcome for you - it is possible. May they be able to remove and/or zap all of them successfully! Know that Gamma Knife is a highly effective treatment that can be repeated if necessary. Good luck with everything!

[Catherine]

Hi Karla,

Thinking of you as you go through surgery this week. All of us our on your team and are wishing that this procedure is soon behind you.

Hugs,

[Kavy]

Hi, All,
You won't believe my SURGERY UPDATE
My surgery was scheduled for today. Sorry I did not say anything yesterday, but I wanted to surprise everyone being back so soon. By the way things turned out, I was the one who was surprised.
I went to the hospital early this morning, checked in, went to the surgery floor, changed in my gown, anesthesiologist came, started the IV, and started asking questions. I told him about my 3 big lung tumors, that I have a mediastinal shift to the left, he also notice my cough. He CANCELED the surgery, because he needed further scans, chest surgeon cleareance for him to put the ventilator, because if something colapsed, it could kill me, and he was not taking the chance. I was in shock, in desbelief. He said they would reschedule the surgery for a week or so, bla, bla, bla. Went home very disappointed after all the preparation. Later in the day, got a call from Dr. Black's assistance saying that because that was a risky surgery, he was not doing the surgery anymore, but that I qualify for Gamma Knife. I'm still trying to make sense of what happened today. So now I'm scheduled for tomorrow to see the radiation neurosurgeon who does Gamma Knife, knowing that this is not the best option for me.
I wasted almost a month on research, doctors visits, steroids, got a round face already, the tumors are probably bigger, and I'm back to where I was a month ago. Great!
My oncologist has been of no help from the beggining. He suggested WBR, when I told him I wanted to do some SRS, he said brain was not his field, that the tumors in my lungs were stables, that he saw me in 3 months.
If the tumor in my cerebellum were smaller, I would be more hopeful, but after my reseach, I know I'm heading for trouble. I just pray that Gamma will work for me as it did for StepheN, but I think she is a lucky exception. I pray I will be too.
Love,
KarlaV.

[Trish]

So sorry to hear about the delay but I'm hoping very hard that StephN is no exception and that Gamma Knife is in fact a good path for you. May it all turn out for the best.
Trish

[Pam P]

Karla - Such an ordeal to go through at the last minute before surgery. Thankfully the anthes. doc knew to use caution and postpone. Terrible disappointment to have to regroup and prepare for a different treatment. Like Trish, I'm hopeful that the gamma knife will be successful and zap all the brain tumors. Will be thinking of you and waiting to hear more news. pam

[michka]

Oh Karla! This is not right! I can imagine how upset you are. I am not a specialist but Gamma Knife seemed to work for many so keep faith! I hope they can take care of you immediately. I am sending hugs and support. Michka

[joyce lutz]

Karla - So sorry about the delay, but it sounds like it's for the best at this time. I understand the anxiety that goes along with waiting and being let down as my daughter and I have had a similar thing happen. So try to look forward to the next best thing which may be some type of SRS AND I would think about getting a new onc considering his attitude!

[Delaney]

Karla, I just want to wish you the very best, I really hope treatment works for you. It must have been so difficult to go home that day without surgery. Everything seems to move so slowly in cancerland. You are definitely due a lucky break. Thinking of you.

[Joan M]

Karla,

I too was disappointed about having surgery rather than targeted radiation alone, but all has worked out so far.

The radiation oncologist said he could do only radiation if I wanted that but thought I would get better control with both surgery and radiation. 95%, as opposed to 50% with surgery alone and about 70% with targeted radiation alone. My tumor was in my front, left lobe.

Out of all my surgeries, the craniotomy was the easiest. There was some discomfort initially in the hospital because they wrapped my whole head extremely tightly in an Ace-type bandage. My hair was sticking out of the top. I looked like a cupie doll. They offered painkillers but I declined and just muddled through it. After two days they took off the bandage, and I had staples from the center of my forehead just above the hairline, down to about the middle of my ear. About two inches of my hair was shaved from my head in the same area. The rest of my hair was fine.

I was not given anti-siezure medication prior to surgery which is sometimes given prophylactically. I had the surgery at a major NYC cancer institute and they don't believe in it unless I was already taking that kind of medication.

I had to take a steroid (Decadron) for a month, and after a while it started to drive me crazy with nervous energy and difficulty sleeping. After about six weeks I started targeted radiation (IMRT) of five doses over one week. Fortunately, my radiation oncologist suggested I try the radiation without steroids. I think steroids are usually given for swelling, but he wanted me first to try without it.

Take a deep breath and let go. You'll do fine. You're in my prayers.

Hugs,

Joan

[StephN]

OH! Karla -
What an ordeal to get right up to the point where they are starting the anesthesia and have them back out. I can feel that frustration just reading the words.

But, now you have a chance to adjust your frame of mind and concentrate on Gamma Knife as something that will have great effectiveness for you too!

I assure you I am NOT an exception. I do believe your brain team was trying to give you what they consider the best chance for total control. However, since you have only the 3 spots, you are in a class of patient who stands a better than 70% chance of good control after treatment.

There was a study released around the time of my Gamma Knife which concluded that patients with HER2 positive brain mets numbering 3 or less (and less than 3cm in size) would have a 91% chance of total control. (My family prayed that the good Lord would take care of the other 9%.)

I have not searched for anything more recent, but that study bouyed up my hope for success such that I really had no second thoughts about going that direction.

My largest tumor WAS 3cm, so I was pushing the size range in that study, but it was not deep being in my cerebellum.

I am here to tell you that I now have SIX years of NED in my head since Gamma Knife. Six years from now you will be able to make that same statement!

[Joan M]

Karla,

Sorry I missed your post about the cancellation, but it's good that the surgery was cancelled. Gamma Knife is less invasive and just one shot to do the job.

Steph's procedure worked out fine, and I'm sure that yours will too. My tumor was 2.6 cm, and surgery was considered better for tumors greater than 2.5 cm. Steph's tumor was close to that size at 3 cm, and perhaps since it was not deep, Gamma Knife was considered a very viable option. In my case, the tumor was deep, so the depth may have influenced the doctors' recommendation. Glad you nipped the WBR recommendation in the bud!

Let us know what happens.

Joan

[krisvell]

Karla,
That really stinks. You'd think the Drs. would have sorted all that out ahead of time. I just got the word it’s most likely brain mets. They can’t biopsy it because of the location, so we’re moving forward that it’s a metastasis. Truthfully, lets hold hands and do this together. I'll be waiting for you.
I just called to make appointments for the Gamma Knife.

I am rooting and praying for you. Hang in there. We can do it together.

Kris…

[joyce lutz]

I swear, I just don't understand doctors! My daughter was asked to get two tests done for her brain mets and today the onc called and said not to get the 2nd one right now and to wait a week!! I'm like - what?? What are these doctors thinking when they order tests? Well, aside from that issue I'm wishing you all the best
Joyce

[Kavy]

Hi, Everyone,
Thank you all so much for your support and kind words.
I will have Xknife next Wednesday to zap the 3 tumors at the same time. If the tumors were smaller, I would be more relaxed, one good thing though is that the bigger tumors are not deep.
I will keep you updated about the Xknife.
StepheN, thank you for the information, and AMEN to your words. I will keep my hope as well.
Kris, I'm sending you a message in your theard.
Love to all.
KarlaV.

[Jackie07]

Good luck, Karla.

Here's some information about x-knife in case you feel like reading more about the procedure:

http://cornellneurosurgery.org/services/x-knife.html