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GracePang 03-12-2011 05:17 PM

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

krisvell 03-12-2011 05:44 PM

Re: brain mets
 
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 03-12-2011 09:04 PM

Re: brain mets
 
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 03-13-2011 12:54 AM

Re: brain mets
 
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 03-20-2011 08:45 PM

Re: brain mets
 
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 03-21-2011 07:50 AM

Re: brain mets
 
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 03-21-2011 11:13 AM

Re: brain mets
 
Hi Pam

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

schoolteacher 03-21-2011 12:58 PM

Re: brain mets
 
Pam,

Hope to hear from you soon.

Amelia

chrisy 03-22-2011 09:31 AM

Re: brain mets
 
Hi Pam,

Thinking of you and sending healing thoughts as well.

krisvell 03-22-2011 12:21 PM

Re: brain mets
 
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 03-23-2011 12:26 PM

Re: brain mets
 
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 03-23-2011 04:38 PM

Re: brain mets
 
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 03-23-2011 05:51 PM

Re: brain mets
 
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 03-23-2011 06:09 PM

Re: brain mets
 
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 03-23-2011 08:40 PM

Re: brain mets
 
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 03-23-2011 09:20 PM

Re: brain mets
 
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 03-24-2011 05:51 AM

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

Jean 03-24-2011 07:56 AM

Re: brain mets
 
Pam,
Thinking of you and saying prayers of strength for you.

Best wishes,
Jean

Mary L 03-24-2011 09:30 AM

Re: brain mets
 
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 03-24-2011 02:54 PM

Re: brain mets
 
Pam,

I am so glad to hear from you.

Amelia

ElaineM 03-24-2011 09:10 PM

Re: brain mets
 
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 03-25-2011 09:28 AM

Re: brain mets
 
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 03-25-2011 10:47 AM

Re: brain mets
 
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 03-25-2011 12:19 PM

Re: brain mets
 
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 03-25-2011 05:17 PM

Re: brain mets
 
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 03-26-2011 04:01 PM

Re: brain mets
 
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 03-26-2011 06:19 PM

Re: brain mets
 
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 03-27-2011 02:43 PM

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

jml 03-27-2011 10:07 PM

Re: brain mets
 
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 03-28-2011 07:15 PM

Re: brain mets
 
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 04-01-2011 08:08 PM

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

Pam P 04-02-2011 09:18 AM

Re: brain mets
 
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 04-02-2011 11:01 AM

Re: brain mets
 
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 04-02-2011 02:38 PM

Re: brain mets
 
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 04-02-2011 07:04 PM

Re: brain mets
 
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 04-02-2011 08:25 PM

Re: brain mets
 
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 04-02-2011 09:40 PM

Re: brain mets
 
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 04-04-2011 04:09 AM

Re: brain mets
 
Thanks for letting us know -I certainly hope things improve for you soon.
Trish


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