Brain Mets, WBR & MRI

[VaMoonRise]

Hi Everyone,

I know I posted on this subject already in a response to another post but I wanted to start a new thread on it because I am scared to pieces and am an emotional wreck right now. I haven't posted in a while and the past few months have been really difficult for me. I feel like I have been kicked in the teeth lately every time I have gone in to see my Onc.

I lasted 15 months on my very first round with chemo on the clinical trial of Tykerb, Herceptin, Taxol and Zometa once a month for liver mets before I started to progress. Going 15 months before progressing is a long time I am told but I really hate that I was taken off of the Tykerb. They switched me to Navelbine and kept me on Herceptin but the Navelbine didn't work at all, then they switched me to Gemzar recently, still along with Herceptin. I will find out tomorrow if the Gemzar has done anything or not. But while being on Gemzar we discovered that I have brain mets. I feel like I can't catch a break lately. It really terrifies me that my most recent chemo treatments haven't been working and that I now have brain mets too.

Several weeks ago I started with a terrible headache at the base of my skull on the left hand side that radiated upward over the top of my left ear that would not go away. I would wake up with it, go to bed with it and start all over again the next morning with it. I thought it was tension headaches which I had never had before in my life but just by the way it felt I thought that's what it was. I would go from the bed to the couch everyday and couldn't even bear sitting up, I was only able to get some very minor relief by laying with my head on a pillow and if I turned my head a certain way it caused even more pain. I was also having awful bouts with nausea. I mentioned this to the nurses in the infusion room and to the NP and they kept telling me that it was probably side effects from Gemzar. I haven't been on Gemzar for very long but I couldn't imagine that the side effects would be like this because I had been on harsher chemo's before without feeling this badly. I finally was able to push them to do an MRI of the brain which I had never had one done before since being diagnosed with BC. My Onc always wanted to wait and only do one if symptoms appeared. I much prefer having them done periodically to be on the safe side and to be able to catch something as early as possible but I don't know how often they recommend having MRI's done for patients with mets.

Well, they did the MRI and unfortunately it came back showing two definite tumors and a possible third. One is located in the cerebellum and the other in the cerebella. They started me on WBR and steroids immediately. I just finished 15 doses of WBR this past Thursday. The side effects of the radiation and steroids have been a bit tough, they range from fatigue to insomnia, hair loss (again), sore scalp, sense of taste all messed up along with thrush from the steroids, emotional rollercoaster, and not sure if this is from the brain mets or meds but I have been wobbly on my feet and sometimes feel loopy in the head, lol.

They stopped the Gemzar immediately while I went through WBR and haven't started me back on it as of yet but have continued with me on Herceptin once a week. I just had a CT scan done yesterday of my chest, abdomen and pelvis which I should have the results of on Monday. I am very nervous about the results of the CT scan because I had failed to respond to my last treatment of Navelbine for liver mets and hadn't been on Gemzar long before discovering the brain mets. I am praying that there are no new areas and that the liver hasn't progressed uncontrollably. I also hate that I have to wait 6-8 weeks for another MRI to even find out if the WBR has had any effect on the brain mets. I am trying my best to stay positive and keep telling myself as long as there are no new areas and even if the liver mets have progressed some more that we can formulate a new battle plan to beat them back again. Not knowing if they will put me back on Gemzar or not or start with something else now is nerve racking too. I just hope that after I meet with my Onc on Monday and get the results of the CT and have some kind of plan in place that I will feel better. I will also be glad when I can stop taking these steroids all together.

I worry about whether or not the WBR will work to shrink the tumors and if not what is it like to go through Gamaknife, Cyberknife etc.. and if that isn't successful either and I have to have WBR all over again how risky is that and how successful?

I am sorry if this post is kind of all over the place, I feel like I can't think straight right now. If anyone else has gone through something similiar I would really appreciate hearing about your experience and where you are now with your treatments and status.

Is there a typical chemo regimen they put most people on who have liver mets along with brain mets? Does having brain mets along with liver mets change my prognosis now? So many questions and worries, I guess I am getting ahead of myself though and will just have to wait til Monday when I meet with my Onc to get my CT scan results.

Well, I ranted enough for now and I know I was all over the place with this post but it feels good to just vent and get it all out.

Thanks so much ladies for always being there to listen, to offer advice, support and encouragement. I don't know where I would be without you all. I love you all so very much, you are the most beautiful women I have ever known and I wish I could hug you all right now. Please know that you all are in my heart, thoughts and prayers daily.

I will be sure to post an update after my visit with the Onc tomorrow. Cross your fingers & toes and say a prayer that there are no new areas found on the CT.

Love & Hugs,
Nicola

[Odette]

Dear Nicola,

you have been through so much and you have so much going on, small wonder you feel like the world is spinning with you!
I reassure you it is very coherent what you wrote! I do not have experience with the issues that you are facing but I have a friend whose large (grapefruit size!) brain mets were very successfully treated with chemo, WBR and Gamma Knife. He is basically back to NED. (His primary was lung).

I'm sure everyone else will tell you this: Tykerb may be a good option for you since it is a small molecule that crosses the blood brain barrier.

All I can offer is sending some positive healing energy towards you, call it prayers or love,

Odette

[VaMoonRise]

Dear Odette,

Thank you so much for responding to my post. I can't even begin to tell you how much it means to me to just to be able to talk to someone about it that isn't an immediate family member or intimate friend. Talking to them helps but I always feel like I have to hold back some and be a bit stronger and optimistic for them than I actually am because it is so hard on them to deal with too. Don't get me wrong, I have the most wonderful family who spoils me rotten and are so supportive, understanding, comforting and there for me in every way but some things that I would like to voice to them are just too difficult because they don't like to let their minds go there. I hate how much this effects the people that I love, that is the worst part of this entire disease. It rips my heart out seeing what it does to them.

The only family I have is my amazing husband, my sister who is four years older than I that lives in GA and a step sister of the same age that lives in NC. It's truly difficult being so far away from them. We talk everyday though by phone or via computer which helps, and we get together as often as possible. My sister and I are the only members of our immediate family still alive. We lost our older brother back in 1986 to a drowning accident, our Mother to breast cancer in 1995 and our Father in 2001 to lung cancer. So it terrifies me what it will do to my sister to be the only living family member left out of all of us. We are best friends and so involved in every way in each others lives that I can't bear the thought of her being left alone. I take comfort in that she is married and has three sons but it is not the same thing as your immediate family where your roots lay. I worry about my husband in the same way, as he too only has his two grown sons that live far away and his Father who lives in AZ and a disabled sister who lives near by us. In my heart I know that they will be okay but the pain that they will suffer is so unbearable for me to fathom. Like all of us I just keep praying and holding onto the faith that I will be here for many, many more years to come. That new treatments and advancements will make cancer a livable and manageable disease much like diabetes until they find the cure.

I am so glad that your friends brain mets were successfully treated and that he is back to being basically NED. It is stories of success like this that give us such inspiration and hope.

I would like to be back on Tykerb but because I progressed while on it I am not sure how willingly my Onc will be about trying it again. Perhaps she will be willing to try it with a different combination of drugs now that I have brain mets along with liver mets. I will be sure to discuss that with her tomorrow when we go in to get the results of my CT. I have also heard about a drug called Temador that has been used on brain tumors with some good results. It will be interesting to discuss the options of treatments now that my situation has changed, I just hope it hasn't changed too much from what I know now at this moment, tomorrow will tell.

Thanks again so much for responding and for your kind words and encouragement. And I apologize for dumping so much personal stuff into a post, it just feels so good to dump it somewhere, like a purging of emotions.

Love & Hugs,
Nicola

[R.B.]

My heart goes out to you. I can only begin to image in the impact of constant anxiety.

Rant away vent and get it all out.

I know it sounds trite but have you looked at diet and particularly the omega threes (and reducing the omega sixes) as an adjuvant treatment.

There are several trial suggesting that brain tumours show lipid imbalances (Excess six and lack of three).

May be you would like to discuss it with your onc. I will post or send you some trial references if that would help.

A balance of omega threes and sixes and adequate supply of DHA (and EPA) is essential to brain function. It is exceeding complex and I do not pretend to understand it all but it is clear the omega threes and sixes play fundamental roles and imbalance may contribute to impaired function.

Fish oil is the best source in combination with general dietary principles - The Breast Cancer Diet Rhondah's - The Greek diet -posts etc

If you have already dealt with diet please excuse my post.

[Jean]

Dear Nicola,
I am so sorry to read your post about recent tests.
Please know that I will keep you in my prayers for
your treatments to get rid of all disease and get you
back to NED fast.

I was so moved by what you wrote about your family.
You are so blesssed to have them. A sister bond is
so very special.

I realize it is so impossible to stay positive but please
remember how many of the ladies have had NED results
and beat back the beast.

Please let us know how Monday goes for you and please
know you are in my prayers - sending you a huge hug.

Warmly,
Jean

[StephN]

Dear Nicola -
Sweetie, what an awful time you have had lately.
You pose a lot of questions, but I want to address the brain mets. There is a paper written by Dr. Weiner of Dana Farber on screening and following up brain mets that is on this site somewhere. It is basically a semi-official recommendation for gals like us. That paper was written for the purpose of handing out at one of the big cancer meetings.

Anyone with mets anyplace should have a brain screening annually. Maybe since you had been on Tykerb your onc thought you did not need one. But the fact that you DID progress on Tykerb means that a screening should have been done when you changed treatment plan.

I have had Gamma Knife on two tumors and it is SO easy and painless! I would do it again in a heartbeat. Just search for Gamma Knife and my posts and you should find some detailed posts from the time I had the GK.

Also look for posts by PattyZ, who has posted extensively on brain mets. She did not have WBR, but has had the other treatments more than once.

It is also my understanding that WBR can only be done once - sort of like the radiation we had after our breast surgeries. Hopefully what the WBR has done is to get any little "seedling" mets which are too small to show on the scan. Then if the other mets still need further treatment, that can be done. And remember - it is not an OPEN surgery - just rays which bombard the tumor and the targeting is very precise.

Let us know about your results. There are also other new drugs like Avastin and Abraxane to try.

[sassy]

Nicola,

I have no advice, just lots of loving support to offer. I do know what you mean about having a supportive family, but not being able to let go and show your fear and frustration. We worry about our families and do not want them to have to experience our fear. I really don't think those who have not experienced cancer can know the quagmire of our emotions. Having the people on this site to share with and seek support from is truly a blessing.

Please know that you are in my thoughts and prayers and keep us updated.
________
LIVE SEX WEBSHOWS

[Bev]

Nicola, I remember you and your sis from chats at least 1.5 years ago. You can make this work. I'm not in Club Met yet but there are plenty who have made it.

I'm wishing the very best for you. I hope you have many useful replies on the direction to take next.

Hang in there. Bev

[Joy]

I really appreciate your post Nicola. I thought it was so expressive in a very clear way and I can FEEL what you were saying-what a gift you have-especially after chemo brain and WBR-you must have a SUPERBRAIN!

Please take the words of the others seriously as they have so much wisdom and there are success stories.

Also, and I may have missed something becaue I know I don't have a superbrain, but you didn't mention Xeloda, did you? Either Xeloda and herceptin or Xeloda and the Tykerb again may help so much because there is evidence that both cross the BBB and xeloda has great activity in the liver for many, of course not all, but I just thought it might be a dialogue for you to have with the onc. I hope your visit today provides you with peace and strategy.

AND be sure to pamper yourself in your favorite ways, it will help bring some calm to you.

So much love to you!

[Emmay]

Dear Nicola -

You didn't say what size the brain mets are, but if they are discernable enough to measure, you should ask your dr about Gamma Knife or CyberKnife (essentially the same) for the visible brain mets. I think of WBR as a precautionary skim-coat of radiation to arrest potential microscopic mets. My sister had WBR after 3 larger mets were removed by surgery. It's my understanding that you can only have WBR once, but focalized Gamma Knife (which is stronger radiation on the met alone) can be used in addition to treat specific mets visible on an MRI. You want to do whatever you can to stop them when they are small. My sister has had CyberKnife focalized radiation several times over the last couple of years to treat new small mets as they appear, and it's stopped them. She is now on Temodar, an oral chemo which crosses the blood-brain barrier, and Sorafenib, an antiangiogenesis drug similar to Avastin. Her MRIs have been clear since she started on that rx in Feb07.

My sister gets Herceptin every 3 weeks, and it has kept the rest of her body clear, post-mastectomy. I don't know if Temodar/Sorafenib would be helpful with liver mets or not, but it's certainly something to discuss with your oncologist.

[hutchibk]

Hopefully Patty Z will read this and offer ideas. I think she has been on Temodar (a brain cancer chemo) in combo with Xeloda to hold other body mets stable for almost 2 years... look for some of her posts and see if you can find her story. She has had pretty good reponse from it I think. My Onc was not too ready to jump on that band wagon when I asked him before Tykerb/Xeloda, but we have talked more and more, and he says that if we need to go that route, I should consult with the neuro-oncology dept at MDA. We don't need it now, but I am glad that he has warmed up to it as an idea for the future.

But, it sounds like an idea that might help you now...

[Shell]

Nicola-

I was so sorry to read of your post, as I was experiencing the same symptoms - WBR was the only option for my as i had too many for gamma knife or stereotactic. I was put on the decadron, although I only need 10 and not 15 treatments - I'm not sure why...pain disappeared right away - hair is falling out, but I was told there would be negligible cognitive brain loss - always a big concern for me as I am a partner at a law firm. The onc believes the radiation issues are much more minor than the lungs (for me) or liver (for you), so I hope they can get that under control.

I'm taking it day by day now, and will see how things go after this week's endl of radiation. I'm goiing to track down Steph's article she referenced - I really do want to learn some more about this...

I hope you feel better too...

Kind regards,

[chrisy]

Dear Nicola
I was thinking of you a couple weeks ago when I was walking in the Relay for life. I'm so sorry you are having to go through this (actually, I am really pissed!) Thank goodness you forced the followup MRI.

I haven't any direct experience, but as you know many ladies here are doing very well after brain mets, and many have returned to NED with treatment. This can happen for you, too.
I think that, although the waiting is hard, it takes some time for the lesions to resolve and it is difficult to distinguish active tumor from necrotic. So although it's hard to wait, you will get better information from the MRI.

I think this is paper Steph was referring to. There is also a lot of other info if you go to the home page then metastasis.

http://www.her2support.org/paper.pdf

Take care
Much love
Chris

[tousled1]

Nicola,

I have no experience with what you are going through but your post hit home. It is so true what you say about family. We do indeed try to remain strong for them and not worry them. Just know that you are in my prayers.

[newgg]

Nicola,

Have been away for a bit and return to find this post from you and the ( as some one has already stated....I am really just pissed) dang problems. Your post was very clear and not "all over the place". These wonderful gals and guys here that have been there and done that.....we know and all understand that there are places in our minds and hearts that we do not share with our family. Even the most supportive loved ones ...we just do not want them to know some of those darkest moments. You must feel all these strong arms hugging you and powerful prayer. The experience and knowledge of this group are coming your way. Hope the mighty Warrior swords have slashed away at the beast!! Take care...Hugs, Bonnie

[pattyz]

Nicola,

This may be too late to be of any use to you... however:

My first dx with brain mets was in Sept of 2002. I had a total of 16 brain mets treated with five focalized radiation treatments over the course of 20 mos. I lived with 14 lesions at once, treating in small batches the largest/most likely problematic. My symptoms were minimal. I refused WBR througout.

Since April of 2005, I've lived with 8 additional brain mets. These have showed a good response to Xeloda/Temodar, twice shrinking nearly 50%, stable with no new lesions now for two yrs. (knockwood)
The largest mets have been 1.5cm, down to 3mm in size. Two small mets have shown up on my brainstem/pons. Others have been throughout brain, front to back, sides to top.

My body mets have been NED since treating with Navelbine/Herceptin late in 2002.

WBR is the first automatic response as treatment. But do your research. IF effective, it is not a 'cure'. Many gals who do WBR have more brain mets appear anyway. Even tho' they will tell you: "there are most likely more mets seeded that do not appear in the MRi." yes, that was true in my case, yet I was able to treat these WITHOUT undergoing WBR.

From April until Aug. of 2005 I waited to treat these current 8 brain mets, doing MRis every two months to keep an eye on them. In Aug then, I became dizzy 24/7 and immediately began my chemo combo. More focalized rads were then not an option as they are cummlative and I had reached the said max amount.

I had to fight to get the treatment I chose. Going in with good information, keeping calm and having my partner there to show his support of what I wanted to do, were really key, I believe.
and that is my experience only....... hope some of it is helpful to you,
best wishes,
pattyz

[Believe51]

Nicola, I am so sorry for the torment you are going through right now, your post had ME spinning along with you. My husband has just finished his WBR and had his share of side effects, one that bothered him most was the confusion, his memory recall and the balancing was troubling too. Since he is off the Decadron and finished with radiation things are falling back into place slowly, the same should hold true for you too. I cannot offer you any medical advice from the questions you have posed but I can send some kind words your way and offer my cyber-friendship.

WBR is a one time thing and should take care of most of the problem for a large majority of the patients, then the gamma knife for those stubborn mets that did not completely go away. Right now the waiting for the next scans is brutal. All I want for all of us is to get a decent result so we can go on fighting this battle. I know many people including my dear late Aunt Eva (brain cancer), who had WBR/gamma knife and made out okay. I do know several friends who have liver mets who have also made out alright. Nicola, the most vital information I can give you is that I worked on an Oncology floor of our area hospital......I have seen many miracles through the years, so many that I refuse 'NOT TO BELIEVE'!!!! I have witnessed many doctors stand there scratching their heads, they appear to be totally confused until they realize what has happened!! By-george, it is a miracle!! I refuse to let any one of them give us a sentence. Why can we not be the next miracle??? Why not you??? Why not the next person??? Soon you shall catch your break.

If you feel better today, write another post with specific questions for these fine friends here that I call 'My Extended Family'. They have always made us feel better than we ever knew we could feel during this outrageous battle with breast cancer. It is sad that your sister cannot give you a daily hug during this all, I think that she would if she was nearer, but surely she has you in heart every second of every day. We can hug you from here, in fact I am sending bigs hugs to you right now, I am throwing prayers at you and positive thoughts your way. You will remain in our prayers, so...we pretty much have you surrounded from the east coast.

As for leaving your loved ones alone here without you: It is my husband who has stage IV HER+ Inflammatory Breast Cancer w/mets to all bones and brain. So I am that person, I am the one that he will be leaving. And I am telling you from the bottom of my very huge heart with the experience of being a seasoned caregiver....I have the same fight. I may not have BC but I still live it each and every day. I am fighting to keep him here and to do everything in my determined power to do so. Keep close to your sister as you always have, she may not be there to help with the laundry, but she can sure know when your appointments are so she can have you covered from where she is. We will surround you Nicola, we will all shower you with the love and support that you need so direly. Make her feel like she is doing what she can to support you because I KNOW firsthand how she is feeling. I feel so helpless, so deperately helpless. Sis will feel she is an integral part of your recovery.

Sorry to ramble on; I love to talk, to help, to absorb others heartache and I always have, breast cancer just made me better. It gives me a reason to give back for all that others have given to us and still do. Remember we all have the same fight, whether patient or caregiver we are fighting to petition for time until our CURE arrives or something close to it. Please do not get offended with this post, it is supposed to give you the nudge you need to smile for a moment. Also remember, you will never be alone, not with this family we have here!!

Waiting For A Miracle....and commanding one soon>>Believe51

[Barbara H.]

Nicola,
I had one three cm brain met three years ago. I had surgery followed by stereotactic radiation. Brain mets are scary and difficult to deal with, but there are many here who have been successful with treating them. Best wishes to you and I will keep you in my thoughts.
Barbara H.

[VaMoonRise]

Hi Everyone,

I don't know quite where to begin. I am so deeply touched by all of the responses and the out pouring of support, love, encouragement, wisdom, advice, experiences, etc. I wish that I could respond to each and everyone of them right at this moment. So many of them brought me to tears because I could feel the depth of emotion behind them.

I want to hug each and every one of you so badly right now and sit with you and chat at this very moment! LOL, the song from Mr. Rogers just popped into my head..."Won't you be my neighbor", lol. I feel like such a fruitloop right now, I am so emotional, I cry at the drop of a hat. I think the WBR has turned my brain into emotional mush, lol. I love you guys soooo much and it is driving me nuts that I can't talk to each and every one of you right now to tell you how much you all mean to me and to get to know each one of you even better. Although I don't post that often on the boards I read almost all of the posts on a daily basis and I feel like I know so many of you on a personal level because of what we all share about ourselves on here. I love the glimpses we get of each others lives and I yearn so much to be personal friends with so many of you. Why do we all have to live in different places, lol, I want us all to be able to get together in person damnit!!! lol. Okay, let me shut up about my emotional yearnings at the moment and get to the results of my CT scan before you all think I have gone nuts and because I could sit here all day rambling about how much you all mean to me. I might even give Believe51 a run for her money on being a talker, lol. By the way Believe51, I love your posts and I feel your love in each and everyone of them and I look forward to us chatting some time soon I hope. Okay, finally to the results:

The results came back showing that there has been significant progression in my liver with one already existing tumor having increased in size by a fair margin, now measuring 5.9 X 2.9 cm and a new tumor measuring at least 3.5 X 3.2 cm. There are multiple other lesions within the liver as well. My chest and pelvis came back with clean results which is a big plus as I was truly worried about the cancer having spread even further throughout my body.

Here is our new treatment plan now. I will be on Xeloda which is in a pill form that I take at home. I take 3 pills in the morning and 3 pills in the evening. I will continue the Herceptin but instead of having to go in once a week to be infused I will be able to go in every three weeks instead. I will also continue to receive Zometa once a month as a bone strengthener.

I will have to wait 6-8 weeks to have another MRI done to see if the radiation has had the desired effect on the brain tumors. If it hasn't then we may try either the Gama knife, Cyber Knife or stereotactic, all of which I think are about the same thing, and if that too doesn't do it then we may try another round of WBR. My onc said that I can have another round of WBR if needed and that it would be 10 doses of radiation and that after that I wouldn't be able to have WBR again. Not sure if that means that I will never be able to have ANY kind of radiation done on the brain again or not, does anyone know? I will have to talk to my onc about that on my next visit. Not sure that my decision will be to go with radiation again or not if this current WBR doesn't work or if I will try some other form of treatment first if available. I have to wait 8-9 weeks for another CT scan once I start on the Xeloda and if it doesn't shrink the tumors in the liver we will be trying something else.

I haven't started the Xeloda as of yet because we are still waiting for authorization from the insurance company which is supposed to come through today. I am very frustrated by this as I am super anxious to start taking it. I hate how long it has been since I have been on anything other than Herceptin and once the insurance company approves the Xeloda there is no telling how long it will take to actually get it because they are going to send it directly to the house which is supposed to help keep down the cost. Hopefully it will be over nighted.

Everyone please feel free to e-mail me directly as I would love to chat with you and it makes it easier to respond to all of the great info and experiences you have had. I really want to talk more with Odette, Shell, Joy, Pattyz, Chrisy, Believe51, StephN, R.B., and Emmay. My direct e-mail address is VaMoonRise@aol.com. I can't wait to hear from you all and Odette I am sorry that I haven't gotten back to you yet and promise to soon.

Love you guys bunches & bunches!

Nicola

[MCS]

Dear Nicola,

I offer you my support. Please speak,vent to us. I know it's hard to do this with other non cancer people, even our family and friends. so we are here for this very reason for you.

so much anxiety of all this info at once, waht to do, when to start , what results will I get and when can I see those results. then the cost of all this

We all go thru this.

Just keep sending out poisitive images out there( kind like the secret) so that the treatments star soon for you.

I will keep you in my thoughts today

Love

Maria (mcs)