brain mets

[Pam P]

I can hardly type those words. Dx yesterday with brarin mets. 5-8 spots they could see on MRI. Largest 2.6 cm in cerrubellum sp. Had 1st rad tx yesterday too wbr - also on decadron. I think 4 weeks of wbr. I was feeling woozy and had headaches and thought it was from the oxycodon after surgery on my leg 2 weeks ago but after a week of not having the drug I knew it was something else. Thinking back I've been really off tired and weak for over a month probably it was this all along.

I'm kind of emotionally numb, scared, thinking is this the end now but holdibg on to all the success stories with brain mets on this site.

I also had my first eribulen tx on Monday but have to quit now til rads are done.

[krisvell]

Oh Pam,
I am so sorry that you had to join my club. I am rooting for all of us to beat down the mets. The success stories are what's giving me hope -- StephN, Joan, Barbara H, Brenda, CourtneyL, Kavvy (and others I probably forgot). Just know that I am praying for you that you can beat this one too.
Hugs and Love,
Kris...

[michka]

Dear Pam, I am so sorry and upset after reading your post. You went through so much already with a lot of courage. I hope you will get rid of these mets real fast. Keep fighting. I am sending you hugs. Michka

[Dianedack]

Oh Pam just had the brain met dx too awaiting a consult with the radiation oncologist on Tuesday. I am very upset and scared as it was such a shock. Hope to hear some positive postings about some success stories need something to cling on too right now. Not sure what will be recommended for me as yet but also having to wait to start chemo again until I have had radiation to the brain. I expect that I will start Tykerb/Xeloda soon as possible after radiation. Anyone had experience of this combo and if it worked for them?

[Jane]

Dear Pam,
I'm sorry to hear about the brain mets. Hopefully, your doctors will do the right treatments and you will end up being like a number of other incredible women on this board living with brain mets.

You have had such a tough go of things this past year.

Truly, I am praying for you and am with you in spirit.

Blessings,
Jane
(Your unusual-autoimmune-disease colleague in Pittsburgh)

[PinkGirl]

Geez PamGirl ... I am so sorry ... This is the pits.
I'll keep all my fingers and toes crossed for you - that
the WBR knocks everything back ... Hang in there strong
woman, we're all right here with you.

[Pam P]

Diane - I had really good luck with xeloda/herceptin then xeloda/tykerb for 3.5 years a few years ago. I was on xeloda/tykerb again most of 2010 and just tykerb nov. 2010 til feb 2011. Obviously it did'nt prevent the brain mets.

Everyone - thanks for your good thoughts & prayers.

[Unregistered]

Thanks Pam I needed to hear that about Tykerb/Xeloda. I am thinking of you please keep in touch in how you are going and I will do the same.

XX

[caya]

So sorry to hear about the brain mets Pam. I'm sure many other brain mets survivors will chime in with suggestions. Sending prayers and good vibes from Canada...

all the best
caya

[Dianedack]

Pam I am so sorry for your DX. Thankyou for the feedback on Tykerb/Xeloda I needed to hear that. Please let me know how you are getting on and I will do the same.

Love & hugs

Diane
x

[ElaineM]

Boy Pam !! This latest news is a real bummer !!!!!!!!Talk with some of the other members who had brain mets and find out what they did to treat them.
Can your oncologist give you something to treat and protect the rest of your body while you get radiation?
Please hang in there and keep putting one foot in front of the other. Think about the pleasant things you want to do after you get finished with radiation and recover from the bone surgery. Keep working towards those goals.
As always I am keeping my fingers crossed for you.

[Mary L]

Pam, I am so sorry to hear this. You have really been through so much and now this. I am praying for you and sending you my Best Wishes. Mary L

[StephN]

Dear Pam! Naturally everyone is upset at this news, but we know that you have an unshakable faith and enough knowledge from real life stories here that this will pass.
You may need to have Gamma Knife or something to finish off the larger met.

Wanted to make sure you are aware of the side effects of the Decadron. Besides being awake like a light bulb going on in the middle of the night, there is the weakness in the legs. You already have less than normal strength in your legs, so if you feel like the rehab isn't working, be aware that is a SE of decadron.

This drug can be muscle wasting, so make sure you get plenty of protein and maybe try the Ensure with muscle building nutrients.

On the plus side - I am so glad you were able to slip in the first dose of Halaven!

[Mary Anne in TX]

Just wanted to send lots of love your way, fighter girl! ma

[Jackie07]

Thanks for the update, Pam. Sending good vibes to both you and Diane.

By the way, Kris left out the founder of this web support group - Christine - who's been NED for many years after being diagnosed with brain mets in her BC recurrence.

[ammebarb]

Dear Pam,
I'm so sorry you have received this diagnosis. I'm sending all my best wishes for great success for the WBR and will be keeping you in my prayers. Gentle hugs.

Barb A.

[kiwigirl]

We will survive it just means a little bit of hard work. I'm on the same page as you but I've already started. So far I've had 6 wbr at a lower dose with a further treatment of VMAT at a very high dose. Spent one night in hospital (vomiting) .

I'm on decadron I've just lowered this dose seems to take two days to kick in on a lowered dose.

I've got 20 rads in total and plan on being like Christine as I'm sure you are to. And we will get there.

Please be strong you have been through alot and your not alone I'm there with you every step of the way.

As i go through this i know i have others with me to give me strength.

Rest is good look after yourself. oooxxx

[Paty]

Pam,

Sending you a big hug and my prayers for you to beat this fast. Lots of love.

Paty

[chrisy]

Pam,
I don't know what to say - other than what has already been said.

Wrapping you in hugs love and prayers.

[Elizabethtx]

Pam
I must chime in and tell you how sorry I am you are facing this latest setback. It is just not fair at all! You should only be recovering from surgery not something else. At least you were quick to discover the brain mets and start treatment. My prayers and a big kick cancer hug from me!
Elizabeth

[joyce lutz]

Sorry for your crappy news BUT - There always is hope. Especially with all the gamma knife type treatments out there today so don't give up! My best to you
Joyce

[sassy]

Pam,

I am keeping you in my thoughts and prayers. Stay strong and looking forward. Lots of brain mets survivors here that you can hang on to their success.

[Mary Jo]

Dear sweet Pam ~ I just wanted to offer you my love and prayers. I am so sorry this, too, has come your way!

Hugs -Mary Jo

[Trish]

Sending you my very best wishes.Thanks for keeping us up to date. I love hearing from you even when the news is sad because you have so much to offer. I love that you are able to give others the benefit of your experience even while you grapple with such difficult circumstances yourself.I am hopeful the treatments will go well.
Trish

[Pam P]

Thank you all for your encougements.

[Patb]

Pam
As I have said before you are a fighter and you
will get through this but you are in my prayers
and healing thoughts every day. You deserve
a break and I only wish you the best.

So many have made it including friends of mine
so push on and take it easy on yourself.
patb

[Mel3]

Dear Pam,

I am so sorry for all you're battling right now. You're in my thoughts and prayers and I'm sending you a big hug.

[Sheila]

Pam, I was so sorry to read your post...sorry i did not get you called back this past week, it was a hard one for me. They have come a long way in the treatment of brain mets....thankful yours were found now....take one day at a time and remember that once you are through with WBR, Halaven is waiting for you to rid your body of all the nasty cells.....you are always in my prayers, you have had a crummy year and you are so deserving of a break....have faith, it is coming! There are so many here who can give you advice/experience with brain mets...just another wonderful part of this group...experience!

[ElaineM]

Have you seen this Pam?
http://her2support.org/metastasis/brain-cns
I know nothing about brain mets, but there seems to be several things about brain mets to check out.
In the meantime add me to your list of people who are thinking of you and wishing you the very best.
Chin up !! Hang in there !!!!!!!! Keep putting one foot in front of the other and never give up !!!!!!!!!!!

[Chelee]

Pam,
My heart just sank when I read your news--you just haven't even had time to come up for air. There is not much else I can say that hasn't already been said other then how much I hate this damned disease! (I wanted to scream when I read your post.) I'm so glad you were at least able to get one dose of the Halaven...I've read such positive news on it. I'm sure it will do some serious damage on the nasty cancer cells. Surprise attack! Shelia is right...they have come along way in treating brain mets. You truly are a warrior/fighter and I know you will get through this too. You have alot of brain met survivors here to help you along. I will be keeping you in my thoughts and prayers. Sending you a lots of love & a really big hug!

Chelee

[Midwest Alice]

Pam you are in my thoughts and I'm praying for you. There are great meds for brain metsand many here that can help you with their experiences. Glad you have your hips done so now can start to heal while you knock out the brain mets. Hang in there.

sending love and hugs,~Alice

[Laurel]

Pam,

I am so sorry to hear your latest. Really just takes the wind out of my sails. Dang. I just wish you could get a bit of breathing room here. I am betting you feel like you are lost at sea with one wave after another crashing over you.

There is so much on the brain mets front these days that I am not about to give up on you, so please you stay mentally strong too! I think you said you will begin Haleven once the radiation is complete. That drug has certainly worked wonders for our dear Sheila, and it is my belief it will do something extraordinary for you too! I am sorry you are struggling so right now. I wish I could reach across the web and give you a big hug. Prayers coming.

[v-ness]

dear pam.

i have always loved that smiling photo of you. my heart ached for you when i read your post. i have thought of you every day since reading it. i hope with all my heart that you will find relief from those mets very soon. yours, valerie

[Soccermom]

Pam,
I too am thinking of you and hoping that rads will do the trick & that you can continue Halaven,

gentle hugs,Marcia

[Pam P]

Thanks everyone for your continued good wishes and caring - lifts me up.

Today is #7 rad out of 20 , almost half way. Decadron not too bad - had relieved headaches, dizziness. Hanging in there - trying to stuff protein and good cals in to gain some weight. The decadron hasn't had much of an effect on that. More fatigue coming they say. so lots of naps i guess.

Thanks for your encouragements and good thoughts and prayers for this tx to work I kick these mets out of my head.

[schoolteacher]

Pam,

I truly do admire you. Hope you have a good day.

Amelia

[Ceesun]

I am praying and pulling for you, too, Pam. Ceesun

[michka]

Pam, sending you strength for the next steps and hugs. Michka

[Joanna J]

Pam,I wish you well,I truly think you w/beat this!!! I am lifting you up in prayer lady,you just keep the FAITH,Lots and lots on here pulling for you, Hugs from WV,Joanna J

[Mary L]

Pam, I am praying for you. I really feel you will beat this. Mary L

[GracePang]

Pam, good to know you tolerate Decadron well. Take a lot of rest, eat well and you will beat it for sure! Grace

[krisvell]

Pam,
I think of you every day and I'm glad you are tolerating the treatment. You are a very strong person and give me great inspiration for me to fight the fight that I'm just embarking on.
So glad you are doing well.
Love & Hugs,
Kris....

[Chelee]

Hi Pam,
I'm glad your almost at the half way point with rads. Here's to the 2nd half flying by. I'm happy to hear you are tolerating the Decadron so far. Your medical team is right...you will have more fatigue coming unfortunetly. I was just thinking how you were still doing rads on your femur when they found the brain mets. So counting the rads to your femur and now the WBR...your body will be screaming at you to get some serious rest. Keep up on the high protein foods...that is so important right now. You take care of yourself and know that your in my thoughts and prayers daily.

Chelee

[Kavy]

Pam,
Thinking of you, and praying that soon those brain mets will be history. I'm glad decadron is helping you, and that you are tolerating it well. Rest, rest, rest, eat well, and try to get some sun and fresh air daily. You are in my prayers.
Hugs,
KarlaV.

[Catherine]

Dear Pam,

I have been out of town and not on the computer. Just now reading about your treatments, think I saw #7 up higher on the post. My thoughts and prayers are with you as you go through all these treatments. I want to add my love and support and wish you well. I will think of you and the little naps you will be taking as everyone has mention the fatigue. Hoping that your bed or lazy boy or couch are really comfy. If I get to Minneapolis this summer, I hope to look you up. Please take very good care of yourself. Sounds like you are doing that with the rest and the protein. I hope the treatments are over soon. You deserve a break and some sunshine!

Hugs, Catherine

[Mary L]

Hi Pam, I just wanted to say hello and hope that you are doing well with the tx. I am praying for you and send my Best Whishes, Mary L

[Becky]

Hi Pam

I just wanted you to know I am thinking about you!

[schoolteacher]

Pam,

Hope to hear from you soon.

Amelia

[chrisy]

Hi Pam,

Thinking of you and sending healing thoughts as well.

[krisvell]

Hi Pam,
Chiming in to say hi too and send my prayers and best wishes you are on the road to recovery real soon.

I'm tolerating the Gamma Knife well and seeing improvements in my vision. The same will happen for you.

Love and hugs,
Kris..

[Sheila]

Pam, wanted you to know you are in my thoughts and prayers...hoping everything is going smoothly for you, and this new issue will be resolved soon so you can get back on the chemo....

[Chelee]

Hi Pam,
Just wanted to let you know that your in my thoughts and prayers. I hope things are going ok for you and you have finished up with the wbr? I'm sure the fatigue has caught up with you so get plenty of rest. Sending lots of positive thoughts your way. Big hugs!

Chelee

[Pam P]

Quick update = I still have 5 more wbr rads to go. Fatigue is more; I have mouth thrush and can't tolerate much food. Lost 10 pounds last week. Got to get over this thrush so I can eat more. I have meds for it and it's a little better. Start chemo again April 7. Decadron is being tolerated - down to 2 tabs a day from 3. Still need atavan to help sleep. Head is bald. Headache and dizzy symptoms much much better. Lots of muscle weakness = I sure from the combo of rads, fatigue, not eating and just lying around. Hopefully after next week I can start to get stronger. Pam

[Jackie07]

Thanks for the update, Pam. Can you drink Ensure or Carnation? They were recommended by my oncologist (who had told me the Carnation powder was much cheaper) I also used some packaged instant medicine soup (GreenMax 'Yam and Multi Grains Cereal'from Taiwan and Percent 36 'Ashitaba Immune Globulin' from Japan besides twice daily 'Linchih' (Gonaderma Lucidum) during my chemo and actually gained a little weight. (Yes, I remember the days when I was using the 'mouth thrush'...)

If you can't find these instant soup, try to cook some rice soup with sweet patato...

Keeping you in our prayers.

[Elizabethtx]

So nice to see you are strong enough to send out an update as we are all thinking about and praying for you! You sound good even if a little worn out. WBR is almost over, hang in there, then you will have some time to recover before chemo begins again. Big hugs!

[Jackie07]

Pam,

This is the mouth wash you posted before:

"The magic wash(maalox, lydocaine, benedryl) helps a little but the maalox stuff is not pleasant." It's the same formula I was prescribed during my chemo. Be sure to use it. We'll be praying for you.

[krisvell]

Pam,
It's good to hear from you and only 6 more treatments. Hope you're feeling better real soon.
Hugs,
Kris.....

[Jean]

Pam,
Thinking of you and saying prayers of strength for you.

Best wishes,
Jean

[Mary L]

Pam, I was so happy to see you post. I am so glad that you are halfway through and that you are feeling better. Your message sounded very strong. I am sending you my prayers and best wishes, Mary L

[schoolteacher]

Pam,

I am so glad to hear from you.

Amelia

[ElaineM]

I am so happy to hear from you Pam. I wish I were closer, so I could make you some homemade thin creamed vegetable and bean soup or fruit juice. I do that for myself and I did that for a friend who had to have her jaw wired shut last years as a result of an accident.
If you don't feel like cooking or don't have anyone to help you cook I have a suggestion or two. Instant white miso soup with instant rice plus a little canned salmon and a few frozen veggies thrown in the soup might help. Also if you have a blender you might want to pour in some milk, almond milk, soymilk, rice milk or yoghurt. Add protein powder from a health food store and a little frozen fruit in small pieces like blueberries. Add water if desired. You can add a little honey, cinnamon or brown sugar if you want, but I never add extra sweeteners when I make it for myself. Cold cereal with milk or yoghurt is pretty good with a cup of tea. You can also get instant oatmeal. Just add hot water and some dried fruit like raisins.
Whatever you decide to do I hope the WBR kills all the mets, so you can get back to chemo as soon as possible.
Take good care of yourself. I have my fingers crossed for you friend.

[MJo]

Sending up prayers for you. Looking forward to hearing that those nasty spots are gone, you're eating and sleeping again and doing something fun to reward yourself for this rough time. Keep up the courage.

[StephN]

Dear, dear Pam.
So sorry to hear this state you are in. It goes with the territory though.

Besides the rads themselves, the Decadron is a killer. It is muscle wasting and everyone here who had to take it said their legs weakened while on it.

When It was my turn to take that drug, I tried to concentrate on proteins to keep up my strength. Scrambled eggs in chicken broth. Eggs were always an easy choice. Noodles in chicken broth. Egg salad sandwich. Apple sauce or grated apple when my mouth was bad was tolerable. Bananas.

Do you have a friend or church member who can help with some cooking/shopping? Hope by the end of next week this will become a memory and the weight loss will have halted. Cyberhug coming your way!

[ElaineM]

Thanks Steph. I forgot the eggs. I boil 3-4 eggs and keep them in the refrigerator for a quick snack with a cup of tea or eat one with a bowl of cereal and almond milk.
I am vegetarian, so sometimes I get some of those packaged instant noodles. I throw away the soup base and add water and instant miso soup plus a few frozen veggies and some edamane or other beans. Great comfort food !!!!!! I use Bragg's amino sauce in water if I am cutting back on salt. Miso tends to be a little salty.
I hope you are feeling better today Pam.

[Laurel]

Sorry it is such a tough go, Pam. Really glad to hear you are on the home stretch. Hang in there, Kiddo. What chemo will you go on post WBR?

[mmoons]

Pam-

You never leave my thoughts and prayers. I, too, wish I was there because I would cook for you and read you mindless, trashy thriller novels to take your mind off this wretched disease, even for an hour.

Your strength is awe inspiring, Pam.

Love,
Maureen

[hutchibk]

I might be the only one here who asked my docs to let me try Tykerb/Xeloda PRIOR to brain rads... It knocked them back for 18 months and then we did targeted IMRT and switched me to Tykerb/Herceptin, both protocols with Tykerb seem to have worked nicely to protect me, hopefully for a very long time. I did have a yucky brain MRI in January that showed what was not definitively DXed as increase or progression of 4 previously treated spots, but we treated them with IMRT anyway. My Rads onc thinks at least 3 of the 4 we had to re-treat were necrotic spread, but could not determine w/out surgery, which we didn't want to do, so we re-radiated. My brain MRIs since my initial treatment of Tykerb/Xeloda have never shown any brand new spots, only waking up of spots from my initial brain mets MRI.

And now, on to T-DM1 which one of my oncs believes will also give me some brain protection. He abides by the theory that more treatments cross the BBB than the standard bearers believe.

[Mary L]

Brenda, I am praying for you that this is the one that will do it for you. Best Wishes, Mary L

[jml]

Pam~
Thinking of you, Inspired & Motivated by YOU...
You make me want to fight again, fight harder and harder,
as hard as I have to, for me, for you, for all of us.
Hope your resting easy, my friend.
Heal quickly!

Sending love and hugs~
Jessica

[WolverineFan]

Dear Pam and Krisvell,

I just wanted to tell you how sorry I am to hear of the news for both of you. Sending lots of prayers to you and your family. May the women on this board who are walking in the same shoes be an inspiration to you both.

Hayley

[LoisLane]

Pam and Kris Thinking of you both and wish you strength while you are undergoing these recent treatments. Take care Lois

[Pam P]

Pam checking in: last of 20 tx was on Wed. Now have pneumonia - on antbiotics - also very dehdrated = gave me lots of fluild by infusion, too weak to get our of chair myself = so I need 'babysitter'. fatigue,& thrush too --- how long until some of this will improve>

Kris --- hope things are better for you!

[krisvell]

Pam,
I am sorry that you had to go thru this. Sounds similar to Karla. You both are home recovering. I'm so glad for that. I truly hope that your recovery is quick. I wish I lived in MN; I would keep you company and help out. I now have a lot of free time on my hands recovering.

I don't want to highjack your thread but I am doing OK. Get tired in the afternoon but feel ok. Walking and doing Yoga to stay calm. Double vision and numb left leg are a little bit better. On Monday, I go to Memorial Sloan for a 2nd opinion. After, I think I will put up a post to see what all my wonderful HER2 friends think of the options.
Sending my love and healing prayers your way.

Kris...

Is the snow finally gone? There's still a few piles lurking in some parking lots in Ct.

[Mary L]

Pam, Kris and Karla, I just want you all to know I am praying for all of you and hoping that you will be feeling better soon. Spring is here and my hopes and prayers are with you for a wonderful spring. Best Wishes, Mary L

[Elizabethtx]

PAM,
So glad you were up to posting an update. I know you are feeling awful, rundown and depressed wondering when this will end. You are already on the road to recovery by finishing the treatments! I am certain every day will bring you recovered strength and health. You are such a strong person and have been through so much. Take care and know we are still praying and waiting for you to feel better!
Elizabeth

[Chelee]

Hi Pam,
So nice to hear from you I have been wondering how your doing? I'm glad your finished with WBR...but sad to hear your now dealing with pneumonia. Your poor immune system has really taken a hit with all you've been through. At least they got you hydrated...that's very important! I did a little research for you Pam and it looks like it takes about 2 wks after wbr to start feeling better.

Now that your done with rads you can get some rest. The antibiotic's will clear up the pneumonia and thrush so hang in there. I sure wished you were closer because I would gladly babysit you any day. Focus on lots of rest and let that medication clear up your lungs and hopefully real soon you will start feeling better. Sending warm healing thoughts and prayers your way.

Chelee

[kiwigirl]

Hi Pam you will feel better soon. I'm finished my treatment 10 days ago and it has only been in the past few days where I have had more energy and feel alot better. You just need to give your body a bit of time. And take the help that you need. It's all about you. Take care.

Regards Jacqui xx

[Trish]

Thanks for letting us know -I certainly hope things improve for you soon.
Trish