Help! Brain mets besides lung mets [Archive]

Kavy

12-31-2010, 12:59 AM

Hi, everyone,
Yesterday I had a brain MRI, and today I received a call from my doctor's office that I have brain mets now, besides the 3 lung mets, and they want me to start on steroid. I'm lost, devastated, sad, etc., I'm not thinking straight, and I do not know what to do or where to go for the radiation. I live in LA, California, and the radiation facility they are sending me does not have gammaknife or cyberknife, so I guess they will suggest WBR. According to the information I received today, I have 3 brain mets, the biggest 2.5 cm, so I think I qualify for Cyberknife. Has anybody here been treated at Cidar Sinai, UCLA or Stanford? Does anybody take boswellia serrata instead of steroid? Is the steroid extremely necessary? What are the side effects of the procedures by your experience? There are so many decisions to make, so much research to do. Today I called Dr. Keith Blake office to make an appointment, but he does not take any insurance. I think I will see him for a second opinion. Tomorrow I will have some friends over to celebrate the New Year. I do not feel like celebrating anymore, but I do want to keep busy and don't think too much, so it will be nice to have my friends over, and it will help my family not to think too much about this news as well.
I wish you all a Healthy and Happy New Year, and may in 2011 we find the CURE.
Thanks. God bless you all.
KarlaV.

Trish

12-31-2010, 02:57 AM

I'm sorry I have no advice to offer but I do send my warmest wishes for an enjoyable new year celebration with your family and friends and I hope you get the best treatment available. I am hopeful that these brain mets can be contained.
Trish

Pam P

12-31-2010, 03:46 AM

Karla - I can relate to your feeling of desperation at learning this news of brain mets and the feeling of not knowing where to go or what to do with yourself, I am so sorry you are facing this news and having to make more tx decisions. I can't offer any advice to your on the type of radiation but encourage you to seek the best possible. There must me good choices in the LA area - even if you have to travel to get the recommended treatment. It sounds like you are already seeking out best options. So many people on this site have had tx for brain mets I'm sure they'll offer more help than I can. I just want to tell you I'm thinking of you and praying that these met will soon disappear altogether with radiation. And yes, I pray that 2011 can be the year of the Cure!

Sheila

12-31-2010, 05:39 AM

Karla
Hoping one of our resident brain mets experts will chime in...Steph from Seattle or Brenda....Brenda has had this more than once...also Courtney i believe just went through it...from all I've read, gamma or cyber knife and not WBR is the way to go...I know they give you the steroids to prevent any swelling....if I remember, Steph was on them...sending hope and many prayers your way that this will be dealt with quickly and easily.....
May 2011 bring new hope to you!

Barbara H.

12-31-2010, 07:26 AM

HI Karla,
It will be 7 years this May that i progressed to Stage 4 and was diagnosed with a 3cm tumor to my prefrontal cortex. I had surgery and stereotactic radiation. At that time they wanted to follow up with WBR and I refused. I am currently NED and on Tykerb and Hereptin. I work full time as a 5th grade teacher and live my life. I am sending this message to you because I want you to have hope. You will have to take steroids, and for me that was the worst part of the experience.
My thoughts are with you. You are doing the right thing by having friends over tonight.
Barbara H.

GracePang

12-31-2010, 09:54 AM

Hi Karla,
I understand your feelings and I experienced the same in July this year when I heard my cancer went to my brain (I also have lung mets, plus liver mets). I was given no choice but WBR, since my tumors were more than a dozen. I fought my best not to have WBR, but gave in at the last minute. During the WBR, I didn't take steroid, but boswellia and it went well. Now, right before Christmas, they told me 3 tumors grows back and they will schedule Gamma Knife for me. I have not talked to me doctor yet and don't know what to expect for Gamma Knife; I guess you have to take steroid as Barbara mentioned.

Barbara, your story is very encouraging.
Happy New Year everyone!

Grace

hutchibk

12-31-2010, 05:33 PM

It is time to make sure you get a second and maybe even third opinion. You want to find a Radiation Oncologist who will treat you with targeted radiation (IMRT - <Intensity Modulated Radiation Therapy>, Cyberknife, or Gammaknife) and not WBR, if it can be avoided... but also sometimes it is the only choice. With pretty small mets, I refused it and went to my docs with the Tykerb/Xeloda plan and regular MRIs to monitor, and the idea to attack them with targeted radiation when needed. I also told them that if my idea didn't work, that I would reconsider WBR. So far it has not been necessary and my Radiation Oncologist says we have probably avoided it altogether.

IMRT, Cyber and Gamma are all similar technology but pretty much just differently branded machines... with minor differences in which is better for various needs. IMRT is given over a few days (in my case 5 days, 15 min appts each day), Cyber is usually a one day visit, but you are in the machine for an hour or longer which would have tested my limits... and Gamma I am less familiar with, but many here have had it. I am pretty sure that Courtney has had Gamma on multiple brain mets with good results. Hopefully she will check in here.

My Rads Onc here in Austin TX is amazing. He has Varian IMRT machines. I don't know how the size of the tumor affects the best choice of machine, as mine were all pretty small (so far 6 in total have been zapped with IMRT, the largest was 9mm).

Kaiser Permanente in LA has IMRT/Varian machines... http://xnet.kp.org/scal/losangeles/specialty/radiation.html

Google/ask around for recommendations of Radiation Oncologists, Cyber or Gamma centers, too.

Ask your doctor if they can start you on Tykeb/Xeloda pretty quick. I got lucky and Tykerb/Xeloda shrunk my brain mets quite a bit and put them to sleep for about 18 months without any initial radiation (we MRIed every month for 3 months to be careful). Then 6 of them woke up and needed to be radiated, so we targeted them and poof they were gone. Haven't seen them since, and that has been almost 3 years now.

Jackie07

12-31-2010, 05:55 PM

http://news.bbc.co.uk/2/hi/health/7535733.stm

Elizabeth1227

12-31-2010, 09:21 PM

Dear Karla,

I just read your post. I am so sorry to hear of your new diagnosis. I too live in the LA area. I know a woman who heads a non-profit organization for cancer patients and she knows all the top doctors and has fought cancer herself three times. She has personal contact with these great doctors. I am so grateful for the doctors I have thanks to her. I have seen doctors at USC, Cedar's Sinai and St. John's in Santa Monica. I highly recommend to you Dr. Paul Song for your radiation. I had radiation in 2008 and also this year. He has facilities in West Hills, at St. John's in Santa Monica, and another in the Reseda area. I have had treatment at the first two. I like the technicians and facility best in West Hills. If you ask to speak to him and they do not do gamma knife (I don't know if they do or not) he will tell you where to go. I do know his facility has the most updated machines in the world. His phone number in West Hills is (818) 884-1683.

I wish you the best,

Elizabeth

hutchibk

12-31-2010, 10:27 PM

This link is to another current thread where Courtney has been talking about her Gammaknife treatments. She lives in San Francisco and has had 19 (!!) treated with Gammaknife... please read it. It might hold many answers for you!

http://her2support.org/vbulletin/showthread.php?t=48241

You can also send her a private message and see where she goes in San Fran for Gammaknife treatment!

Best wishes...

Darlene Denise

01-01-2011, 09:35 AM

Courtney is treated by Dr Penny Sneed at USFC. Dr Sneed is from Stanford and is very aggressive using focalized treatment.

I have had 11 lesions treated with Cyberknife. The first "batch" was 8 in 09/08 and in 06/09 three more showed up and were cybered.

Wishing you the best info and treatment options as you work your way through this.

Darlene

Kavy

01-01-2011, 08:21 PM

Thanks everyone for your support, prayers, and information, they are very helpful. Thanks for sharing your experiences as well, they are very encouraging and give me hope. You guys are awsome, God bless you all.
Yesterday I had a great time with my family and friends, I hope you did too. I totally blocked this news from my mind, and it worked.Today reality kicked in, and I'm putting my fighting gloves to get ready for this big fight.
Today I'm dizzy, but no pain, I have been dizzy for a few days now. Does the steroid help the dizziness too, or it is for pain and swelling? I haven't taken it yet.
Does anybody have experience with Temador?
Again, thanks so much for your help, I will keep you all updated.
Love,
KarlaV.

Grace, I'm so sorry you are going through this again. I hope the gamma knife will make these mets disappear for good. Sending healing prayers.

Brenda, thank you for all the info. I have been on Herceptin/Tykerb for about a year now. I had Tykerb/Xeloda last year, and it did nothing for my lung mets. I wonder if it would work for the brain.

Elizabeth, thanks for Dr. Song's number. Could you PM me the name and phone number of this person who knows top doctors?

weety

01-02-2011, 12:29 AM

Kavy, I don't have specific recommendations for you, but I do remember something that my onc said to me when she recommended that I get a 2nd opinion. She said that my insurance (kaiser) will only pay for treatment at their own facilities. However, if I go for a second opinion, and that 2nd opinion recommends a treatment that kaiser cannot offer me, they must pay for an outside provider to provide it for me. I don't know if this will help any in your case, but I noticed you said that your ins. company did not have the radiation type you wanted and the doc you went to does not accept any insurances. Maybe you can ask your insurance about what I was told???

joyce lutz

01-09-2011, 06:54 PM

My daughter had 2 rounds of Temodar along with Avastin for her brain mets. Unfortunately, she is experiencing progression on that treatment plan so they are now putting her on Tykerb. We are pushing for Tykerb AND Xeloda but so far her onc won't do the Xeloda unless the liver mets progress. A second opinion we sought out agreed with his. She tolerated Temodar fairly well and had nausea and fatigue with it. However she only did 2 rounds of 5 days each and then was off of it for 23 days each time, but had Avastin every other week via IV. My best to you
Joyce

Joan M

01-09-2011, 08:36 PM

Karla,

Brenda who has a lot of experience with brain mets pretty much said it all. But I'd like to add that my single 2.6 cm tumor was treated with surgery and then Varian IMRT. I had five dosages to the tumor bed about six weeks after surgery.

My tumor was considered medium-sized, and the doctors said I would get better control with surgery followed by radiation. I was very disappointed because I was hoping for just one radiation shot to the tumor.

I had the surgery in October 2008 which was followed by radiation in December and all has been well since. However, because you have more than one tumor, and since I never had radiation-only treatment, I'm not sure what the size limitation is for such single-shot radiation to a tumor.

Also, except after my brain surgery, I was not given a steroid during radiation. The radiation oncologist suggested that I try radiation without a steroid, and it worked okay.

You should probably be in a larger facility if you use IMRT, as this radiation equipment is much more complicated than Gamma Knife, and requires constant monitoring of the treatment program by doctors who do it a lot.

Good luck.

Joan

Kavy

01-12-2011, 02:50 PM

Hi, everone,
Thank you for your help.
Here is a fast update. I'm trying to do Gamma knife, probably at Cidars Cinai ( any experience there?), but they suggested surgery to remove the cerebellum tumor that is 2.8cm, and can cause me problems if I do not have it removed first. Surgery probably with Dr. John S. Yu (have any of you heard about him?). One radiation oncologist there said if I did not do surgery I woul playing a russian rullet, and that if it was his brain, he would have surgery. Wow, brain surgery!!!1Went for an appointment at UCLA for SRS ( Novalis), I did not feel impressed by the radiation oncologist over there, and that got me very frustrated. Today I got a call from Stanford in Palo Alto, Cyberknife place, and they want to see my CD record to see if I really qualify for the procedure, apparently I do. But that is the question, all this burning in the cerebellum, either Gamma Knife, Novalis, Cyberknife without removal of the tumor might create scar tissue. How often this happen? do you know anybody who had problems later on for not having the tumor removed first?
Thank you so much for your help. I will keep you all updated.
God bless you.
KarlaV.

StephN

01-12-2011, 03:42 PM

Dear kavy -
Glad you are persuing a radio-surgery of some kind rather than WBR. Don't let them scare you with that "Russian roulette" talk. This is breast cancer mets and are in treatable areas.

I had 2 brain area tumors. The largest was 3cm in my left cerebellum. I had Gamma Knife for both. They did talk to me about "splitting the baby" (having a surgeon remove that one and hitting the other small one with GK). They left final decision to me and I said Gamma them both. I did not care if they are trying to spread around the "work" - I just wanted it done and over.

I did need the steroid as the cerebellar tumor was causing inflammation which was impinging on a ventrical. (Yes, brains have ventricals as well as hearts.)

Let them treat ALL the tumors with whatever form of radiosurgery you can. The best thing about Gamma Knife is that it is all done in one day, with one treatment to each area. No going back day after day. I felt just fine the next day and was out driving and living normally.

SCAR TISSUE - YES, I have it. But it does not cause me any symptoms or side effects.

My surgeon actually called the cerebellum "a redundant part of the brain." It does serve some functions, but not the main ones that are in higher and deeper centers.

Praying that a good decision that you are comfortable with will appear. I have heard good things about Sinai from members here in the past.

joyce lutz

01-12-2011, 05:09 PM

My daughter will probably be having Novalis LINAC. Short for Linear Accelerator. It is in the Gamma, Cyber Knife family of SRS Stereostatic Radio Surgery. They say they can kill her tumors w/it and I pray they are right! I hope you find the right procedure for yourself very soon. I know all this is so confusing but hang in there and it'll become clear what you want to do. My best to you.
Joyce

Ceesun

01-15-2011, 07:43 AM

Just sending along good wishes for a speedy resolution. Sorry I do not have any advice on this, but you certainly have received many helpful comments from our Her2 experts. May God Bless. Ceesun

joyce lutz

01-15-2011, 10:26 AM

Well we now find out that they don't want to do the SRS LINAC procedure until they see how the tumors react to the Tykerb and he doesn't believe all 7 should be done! This is AFTER the one dr. (the SRS surgeon himself) told us he could do all 7 tumors in two sessions and that all should be fine!! I just don't understand how he could've said that and then his team member tells us differently. Right now we are so disappointed and confused, not to mention angry! Any suggestions? My best to you all
Joyce

hutchibk

01-15-2011, 09:16 PM

OK, I understand how confusing this would be... but if it helps, a similar plan is how I approached it... successfully for 18 months. I did Tykerb/Xeloda first with very close monitoring. (MRI at month one, then when that one looked good, an MRI 2 months later, then when that one showed shrinkage, an MRI 3 months later showing that they were no longer active, and then continued every 3 months for 18 months... until my TMs started to rise and my 3 month MRIs showed 5 of them had woken up again). I started with 7 mets of varying size between punctate size and 9mm.

At the point that 5 of them woke up and showed activity on MRI, we went in and did sterotactic IMRT on them and zapped them into oblivion. A year later, one more woke up, and we zapped it. I switched from Tykerb/Xeloda to Tykerb/Herceptin.

Just make sure you push for the Xeloda w/ the Tykerb if they want you to try this plan, and make absolutely certain that they MRI/monitor her brain extremely closely at the 1 month interval, until it shows positive results from the Tykerb/Xeloda, and then cautiously move to 2 or 3 month MRIs.

joyce lutz

01-16-2011, 07:11 AM

Brenda - so you feel the Xeloda is the secret to success in the Tykerb/Xeloda combo rather than the Tykerb alone? My best to you
Joyce

hutchibk

01-17-2011, 04:24 PM

Not necessarily, but I think it's the best starting point with Tykerb. I don't know that it's the key, and I am not qualified to say, but I know that Tykerb was approved in combo with Xeloda first, so that's what years of trials yielded as a very synergistic combination... and Xeloda works to keep the rest of the body in check as well.

joyce lutz

01-17-2011, 04:38 PM

I know that Tykerb was approved in combo with Xeloda for brain mets but I can't seem to find out WHY it had to be in combo w/Xeloda. Does anyone here know? Is it because the Xeloda seems to boost the Tykerb to make the Tykerb work better on the brain or is it because it is metastatic disease and they wanted something to work on both the body and the brain? My best to you all
Joyce

Jackie07

01-17-2011, 10:22 PM

Karla,

Dr. Yu has a very impressive resume according to the information provided by the hospital. http://www.cedars-sinai.edu/Bios---Physician/P-Z/John-S-Yu-MD.aspx

Novalis TX is a new technology of SRS and is more precise and focused (with less side effect) than either Cyberknife or Gammaknife.

Joyce,

Tykerb has always been given along with Xeloda. There are some trials going on right now on giving Tykerb without Xeloda (such as the one combining Herceptin and Tykerb) But physicians are not going to change the protocol until getting those trial results confirmed.

joyce lutz

01-18-2011, 06:20 AM

Hi Jackie - My daughter's onc has just prescribed Tykerb WITHOUT Xeloda! That's one reason I was asking the question b/c I too have always read Tykerb was prescribed WITH Xeloda, but I can't find out WHY and if Tykerb by itself will work on brain mets such as my daughter has. I hate to see her waste time on Tykerb alone if it isn't going to work without Xeloda! It such a scary situation. My best to you
Joyce

Karen Wheel

01-18-2011, 07:42 AM

Kavy -
Sorry I am a bit behind reading on the site and just saw this. I am hoping you are doing okay --- haven't seen an update for what you are doing for sure - only questions on the doctors on the proceedures ....

When you can give us an update.
Thanks - and hang in there! Karen

Kavy

01-19-2011, 10:13 PM

Hi, everyone,
Sorry for taking so long to update.
I got a call from Stanford, and they said i have to remove the tumor before I do Cyberknife. What a disapointment. I saw a neurosurgeon yesterday, and he said he will remove both tumors (cerebellum and occiptal lobe), so I will have a craniotomy next week, I don't know the date yet, then Gamma Knife a few weeks later to zap the tumor beds and another small tumor.
I'm still getting used to the idea. I know that Joan, Barbara, Stephen and Christine know how I feel. Any advices, suggestions for before or after the surgery?
Thanks again for your help. I feel blessed to be part of this beautiful family.

Joyce, I'm sorry your daughter couldn't get Xeloda with Tykerb. I can't believe her doctor didn't give to her. Can't you change oncologists? What about Temador? Praying that she gets the right treatment to help her.

Grace, how are you doing after the Gamma Knife?

Love to all,
Karla V.

StephN

01-19-2011, 10:42 PM

Sorry Carla -
But I do NOT understand why they have to remove those tumors BEFORE they do Gamma Knife. I had ONLY Gamma Knife to the tumors. My tumor in my cerebellum was 3 cm, so size was not an issue here.

CourtneyL has had something like 18 spots treated with targeted radio surgery now. Never any open surgery. It would be nice to have a more complete answer as to why you can't just have the Gamma Knife.

This is much less disturbing to the rest of your brain, and easier on you altogether!

Brenda has also only treated the spots without any open surgery. What is different about your tumors?

P.S. A friend of mine here just had cyberknife on 4 spots in her brain and that is the end of it. No GK to tumor bed or whatever.

Jackie07

01-20-2011, 12:31 AM

Karla,

I've had a brain tumor surgery in 1990 that took 23 hours and three 'shots' of Gamma-knife radiosurgery in 2001, so I'm generally not worried too much about surgeries involving the brain. It will take some time to recover, but recover you will.

However, a surgery involving the cerebellum can be risky sometimes because the area is the 'life center' responsible for regulating our breathing and other 'vital' functions.

Your neurosurgeon sounded like an experienced veteran in this particular area. I remember how anxious I was waiting for my 'craniotomy'. I hope you have plenty of support at home.

Remember to get plenty of rest (take a deep breath whenever you are feeling anxious) and eat well.

Sending you good vibes.

joyce lutz

01-20-2011, 05:49 AM

Hi Karla - Lots of people here are pulling for you so hang in there. I'm sure things will work out. As to my daughter not getting the Xeloda w/the tykerb - she was denied the Tykerb b/c it wasn't written with the Xeloda!! (I had to laugh to myself on this one.) So now the onc is going to write it with the Xeloda (can you imagine?). She did try Temodar previously with Avastin but it didn't work unfortunately. If the Tykerb doesn't work then she will have SRS. I pray the Tykerb works so that we have another option for the future. Let us know how everything turns out for you. My best to you
Joyce

GracePang

01-20-2011, 01:04 PM

Hi Karla,
I understand how anxious you are and I would be the same. However, I read so many good stories about craniotomy on this and another site; plus, I know a lady who had craniotomy on Jan. 11 and she was up and walking by Jan. 12. She recovered so well and were sent home right after post-surgery MRI.

Joyce, I am happy to know your daughter's doctor finally agreed to give her X/T. Similarly, my doctor reluctants to give me Tykerb. I will ask him again when I see him on 26th.

My Gamma knife went well. I updated my info on my old thread. My rad onc said no steroid needed; so, I am taking some Bosewalli just in case. I have been feeling good and all three tumors were treated.

Grace

joyce lutz

01-20-2011, 04:47 PM

Grace that's great! Glad the SRS went well. Hope you can get the Tykerb too! My best to you
Joyce

hutchibk

01-20-2011, 10:32 PM

Hi Joyce... so glad the doc is being forced to write the Tykerb w/ Xeloda. I talked to an onc today who I really respect and he was concerned about the way I described your daughter's situation... he said there is a synergy in the combo that is necessary for the best possible result.

Very good news Grace... please keep us posted Karla!

joyce lutz

01-21-2011, 07:09 AM

Brenda - Thanks for doing that. What I'm tryng figure out is if they recommend the Tykerb/Xeloda combo because it works good on the brain or b/c it works good on the body mets? Supposedly tykerb works on the brain but I see no indication that Xeloda does. Anyone know? My best to you
Joyce

Trish

01-22-2011, 01:48 AM

I think it is supposed to be good for brain in combination with Tykerb. Rich posted a really good review article about brain mets last year which has a section on chemos as well as radiation and surgery. I think I found it when I searched "whole brain radiation" but I think "brain metastases" will bring it up too. Hope the combination works for your daughter.
Trish

joyce lutz

01-22-2011, 09:42 AM

RICH if you see this post could you send me the link to what Trish is referring to? Thanks! Trish thank you too. My best to you
Joyce

Jackie07

01-22-2011, 04:22 PM

Joyce,

I think this might be the one Trish's talking about:

http://her2support.org/vbulletin/showthread.php?t=42084&highlight=brain+metastasis+radiation

hutchibk

01-22-2011, 05:53 PM

Miscellaneous info I have been able to drum up:

http://cpharm.vetmed.vt.edu/VM9096/handout.htm

under anti-metabolites (fluorouracil is the infusion/Xeloda is the pill... they are the same drug)
......................................

In chemistry, weights are measured, not in kilograms, but in Daltons. In fact, it turns out that only molecules that have a molecular weight smaller than 500 Daltons can reliably get through the Blood Brain Barrier. Now a molecular weight of 500 Daltons is not very big. Water has a molecular weight of 18 Daltons, while insulin is up around 5,000 Daltons. Viruses (with molecular weights in the millions and billions) are a heck of a lot bigger than this, and bacteria are much bigger again. So in general it's rare for big chemicals, viruses and bacteria to be able to cross the Blood Brain Barrier and get into the brain.
xeloda (Capecitabine) molecular weight - 359.35
.............................................

http://professional.cancerconsultant....aspx?id=41058 (http://professional.cancerconsultants.com/news.aspx?id=41058)
Study participants had previously been treated with Herceptin, cranial radiotherapy, and Tykerb monotherapy. All patients in the current analysis received treatment with Tykerb plus Xeloda after experiencing cancer progression on Tykerb monotherapy.

20% of patients experienced at least a 50% reduction in measurable brain metastases.
37% of patients experienced at least a 20% reduction in measurable brain metastases.
Side effects of treatment included hand-foot syndrome (grade 1 or 2 in 37% of patients and grade 3 in 8%); diarrhea (grade 1 or 2 in 34% of patients and grade 3 in 4%); and nausea (grade 1 or 2 in 22% of patients and grade 3 in 8%).

joyce lutz

01-22-2011, 06:11 PM

Jackie and Brenda - Thank you for the info! My best to you
Joyce

Kavy

01-24-2011, 02:28 AM

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

01-24-2011, 03:59 AM

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

01-24-2011, 09:01 AM

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

Amelia

Pam P

01-24-2011, 07:59 PM

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

krisvell

01-24-2011, 08:27 PM

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

01-25-2011, 05:30 PM

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

01-25-2011, 09:46 PM

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

01-26-2011, 12:05 AM

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

01-26-2011, 01:29 AM

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

01-26-2011, 04:06 AM

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

01-26-2011, 04:12 AM

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

01-26-2011, 07:33 AM

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

01-26-2011, 11:13 AM

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

01-26-2011, 01:25 PM

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

01-26-2011, 01:43 PM

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

01-26-2011, 01:58 PM

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

01-26-2011, 04:47 PM

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

01-26-2011, 04:56 PM

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

01-28-2011, 12:14 AM

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

01-28-2011, 12:58 AM

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

Kavy

02-04-2011, 01:40 AM

Update on Xknife

Hi, my friends,
I had the xknife procedure this Wednesday morning to burn the 3 tumors, and I stayed there for 12 hours. What a long day.
First they attached a light metal mask to my forehead and the back of my head. I heard that the needles are the most painful, but it was not that bad at all, and the screws are not bad either, no headache, very duable, and I stayed with the mask all day long until around 7 pm. I was sleeping on and off during the actual procedure, and I'm still tired, but getting better. I'm still on decadron and now on Keppra too, anti-seizure medication for 3 months. Is is anybody on it?
I will see my radiation oncologist in two weeks to see how things are going. Praying for the best.
Thanks again for your prayers, help and kind words.
Love you all.
KarlaV.