help advice please ?

hezzy · 09-09-2009, 07:44 AM

Well I'm finished with the brain mets rads, and waiting about four more weeks before the MRI to see how the rads worked. Also, finished rads to the vertbra area too. They still have me on dexamethasone, morphine 12hr, and thankfully lorazepam
It all finally caught up with me Im past exhausted at times with no energy to even climb the stairs to go to bed I've been sleeping on the couch. My appititte went down big time Im forcing myself to continue to push fluid,food, and protiens.

The hardest part is when they were hitting the vertbra with rads it also hit the throat area and my throat has been swollen. It's hard to eat anything without having pain in the throat, eating hot food hurts, too cold bothers, im eating like a baby just to make sure I eat. I hardly have any taste to anything.
They told me they thought having a nasty cold was my throat problem and they felt horrible that they hadn't given me anything faster. They gave me a swish medication to put in swish around and swollow, but Im not sure its made much difference. ...... PLEASE ANYONE any advice ?????

I start Xeloda on Monday and continue with Herceptin too. They said there are no side effects to Xeloda other than maybe ending up with dry skin. I keep reading a lot about Tyberk on here too Im going to ask the ONC about that drug also, but I know she said she wanted me Xeloda because it passes the BBB and also hits the other area too.

Im sorry if I seem venty. The fight is scaring me not knowing much about it yet. My energy is gone which they say is normal, it tears me up that Im not the one taking my little girl to school or picking her up. They told me in a few weeks I should have my energy back .... is that how it works .... please someone?

sorry, heather

tricia keegan · 09-09-2009, 08:02 AM

Oh poor Heather, you're going through such a lot right now and please don't apologise for venting when we have so much to complain about

I don't have much advice for you but thought you sounded like you needed a big (((((hug)))) today and wanted to say we all care...wish I could be there to give you one for real

Btw, my friend just had rads for her bone mets and has the same throat problem from that, she's having high energy drinks with just warm soup until it heals a little.
Hope you feel much better soon

Faith in Him · 09-09-2009, 08:05 AM

Heather,

I am so sorry you are going through this ordeal. I have no advise but I just wanted to let you know that I am sending warm wishes your way.

I know what it's like to not be able to be there for your school aged children for awhile. It torn me up too. Hoping you are back on your feet soon.

Tonya

hezzy · 09-09-2009, 10:45 AM

Another ? ...
I can't seem to hold anything down. I think its a lot nerves just being shot, but idk? Any advice or has anyone heard of any of the meds Im on causing nausau?

chrisy · 09-09-2009, 12:01 PM

Hi Heather,

Remember, you have no need to apologize here - we've all needed to vent and thank goodness we have each other!

You have been through a lot, and been ON a lot of medications. Remember, you also have not been eating regularly, so your entire system is under siege. The combination of all that could be contributing to nausea. Talk to your doctor about this and if you need it, ask for some meds to help you.

Although I have not had radiation such as you have, the recovery period until you feel more or less normal will vary. The more you can do in the way of getting good nutrition, the sooner you will be able to regain your strength.

You're doing the right thing by trying to stay hydrated and get some nutrition.Start slow, if you can stomach a fruit smoothy with some protein powder, that might help.

Re Xeloda, (I also have not had that so remember I am ignorant) I do know from friends here that the main side effect (hand/foot syndrome) can be more bothersome than just "dry skin", so be vigilant on this - avoid walking barefoot, use moisturizers (Sheila loves some stuff called "Ahava"). Sheila is the Xeloda queen, she can tell you all the tricks.

Xeloda/Herceptin is a fairly common and effective combo - although Herceptin is not likely to cross the BBB. Tykerb is thought to cross the BBB so may be protective of the brain, and has been shown to be effective in combination with Xeloda. As you are dealing with brain mets, it is worth discussing with your onc. Tykerb (which I have been on!) has diarreah as the main side effect - most people can control this well with diet and Immodium. Part of my war on that side effect has been my persistent refusal to learn how to spell it.

One of the toughest things about going through treatment is keeping your spirit strong. Even when you are feeling well physically it's hard...but it can seem unbearably draining. Hang in there, remember if you feel this crappy it's nothing to what those dumb cancer cells are feeling right now.

schoolteacher · 09-09-2009, 12:01 PM

Heather,

Use the mouthwash, it helped me a lot with the radiation. Hope you are feeling better.

Amelia

Pam P · 09-09-2009, 12:02 PM

Heather - I was on xeloda for a long time & don't remember having nausea. My skin on hands/feet got painful at times, but otherwise I felt great while on it. Sorry I don't have any advice for you ont he other - just want to tell you that I'm so sorry to hear of all you are going through right now. I Hope now that the rads are done you'll start feeling better quickly.

sarah · 09-13-2009, 10:57 PM

Hello,
I woke up one night with the inside of me on fire while I was in radiation. Luckily my husband who often has Gerd gave me some liquid maalox to swallow and that helped. The next morning the radiologist gave me a prescription for an anti-acid type drug and that helped. So try that, you don't want any stomach acids reaching your esophagus.
hugs and love
sarah

Lien · 09-13-2009, 11:52 PM

Hi Heather,

We all understand that you need to vent! Ofcourse you are tired, in pain, upset, insecure, afraid. Who wouldn't be in your situation? You are doing the right things, though. You are not forcing yourself to do things you can't handle right now. When my Mom was in the hospital, years ago, a lady sharing the room with her told her to take things one day at the time. Yes, there's pain, yes there's fatigue, fear, etc. But it is here now. And tomorrow it will be a little bit better. And the next day, and the next.

So don't worry about not looking after your little girl, you are doing your best to make sure you will be around for a long time yet. That will be so much more important for her than you picking her up now.

Just yesterday I was talking to my now 14 yr old about my cancer. He said: "yes, I was afraid you would die, but I didn't want to think about it too much. I didn't want you to worry about me. You had enough to deal with." This was 5,5 years ago, when he was 8. I was worrying about him then, because he didn't talk about it, but he managed very well. They need to deal with this disease in their own way, I think. He did talk to others, though, as I found out later.

I am a councellor, and I recently worked with a woman who's mother had breastcancer when she was a young child. The most important thing she remembered, was that her mother took some time to be with her every day. Her mother was in bed for weeks on end (chemo and rads were even harsher, 40 years ago) and she would sit on the bed and just chat. Her mother would tell her what she liked about her (the daughter): how smart she was, and how independent and that she loved her. Those moments really mattered. And my client never talked about the fact that her mother didn't pick her up from school.

So put your energy into sustaining your body: keep it hydrated, keep it well-nourished and get plenty of rest. If you conserve energy by sleeping on the couch, that's a good idea. If you need help with practical stuff: don't hesitate to ask. If having stage IV cancer isn't a good reason to ask for help, support and TLC, I don't know what is. You'll be doing all that as much for your daughter as for yourself.

Try putting foods in the blender. Vegetables, fruits, protein powder, milk, soy, etc make great shakes. I used to make soup for the kids by cooking chicken in salted water, then adding vegetables and putting it in the blender until smooth. Drink lukewarm. You can save a few portions in the freezer for when you are too tired to cook. Or better even: ask someone to make them for you and freeze in portions.

Is it just your throat that's sore, or is your mouth painful as well? In that case you might want to drink throuh a straw.

Hang in there, girl! We're here to support you! Keep venting and don't worry about us. We can handle it.

Big hugs,

Jacqueline

Joan M · 09-14-2009, 01:59 AM

Heather,

This disease sucks and at times it really robs us of so much. I'm praying that you'll feel better and will able to take your daugher to school soon.

Joan

suzan w · 09-14-2009, 06:13 PM

Hi Heather...thank goodness for Ativan (lorazipam) eh!! I used Biotin mouthwash, it is kind of gel-like...and was very soothing. When I could not eat much...change in taste buds, mouth sores, etc...scrambled eggs tasted pretty good...sometimes with a little cheese mixed in. And, believe it or not...Blizzards from Dairy Queen, although the cold was sometimes a problem. Good luck! and remember, everything that you are doing it to help you get better so you can be there for your kids! XO Suzan