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Posted

Dear Friends,

Just an update to let you know what the first WBR was like. I have had radiation to the chest area, so kind of knew what radiation was already like. I am also taking Temodar 125 mg. per day, it is an oral chemo. It helps the radiation to act more effectively to the brain.

I have to tell you, I had no idea what to expect with WBR. I was was very relaxed going into treatment today, but later got a headache and cried for a good hour. I wish I could report I was a brave soldier, but alas I felt like my brain was swollen and felt very foggy headed. My eyes strobbed the whole way back from the doctors. Probably just light adjustment or the steroids. My hands felt discombobulated from my body or something. It was really weird, they just didn't feel attached. I came home and had a panic attack just trying to figure out the plethora of pills and or when to take them, it is very confusing! My thanks to Jack for figuring out this mess! He joked and said that he was throwing out the weekly pill dispenser and dumping out one of his old fishing tackle boxes to use instead. I take 12 steroids per day, 3 different dosages of chemo pills daily, as well as 2 antibiotics a day, but only on M-W-F. Not to mention a few others like nausea meds and antidepressants. The oral chemo regimine alone cost $750!!!

Anyway, this has been frightening and challenging to say the least. My appetite has been unbelievable! I imagine that will change now with this chemo I am on, plus I will stop the steroids I am taking soon. I must say that made me full of energy and Euphoric. not at all grumpy or mean- just fatter!

I will keep you guys updated , in hopes that maybe my experience can help someone out there. I have 14 more to go.

Love,

Cheryl

Posted

Cheryl,

Bless your heart! Thank you for sharing your experience. We are all praying so hard for you. Thank God you have such a good support system. Jack is a

darling. My heart goes out to you. I hope it gets easier for you. And, I think that anxiety probably played a part in your feeling so discombobulated. I feel like that naturally and I'm not having WBR.

Just know that this too is temporary. Better times are ahead.

Stay strong my friend!

Hugs to you,

CathyR

Posted

Cheryl,

I hate that you are having to do this in the first place, but it sounds like a sorta rough first day. I hope it levels out and that the confusion etc will go away once the swelling goes down from the WBR. I have never had it so I will look for your continued updates. The best of luck.

Nina

Posted

Hang in there Cheryl.

The steroids have put me in tubbyland. I keep getting fatter and fatter and fatter... and then the seams burst...kapow! And then I keep getting fatter and fatter until more seams burst! :P

(But at least I am still here to tell you about it!)

Cindi o'h

Posted

Good for you, Cheryl. You're a trooper, for sure. I think you'll find it somewhat helpful to write about what you feel every day too -- I did when having PCI, and what you're going through is way more than I ever did with that.

It isn't reasonable to expect that we will feel anything like "normal" when our bodies are being strafed by chemo, radiation, and tons of pills every day, but I hope you have more good days than bad, and that you come out the other side of this with an excellent result.

Di

Posted

Cheryl,

I think you are a very brave soldier. Hopefully as each day passes things will improve. Try to keep your spirt up and tell yourself everyday that your going to beat this monster.

Best Wishes,

Dee

Posted

Hi Cheryl,

You are very brave.

But as Iam new to this, what is WBR? I imagine that is some kind of radiation.

best wishes, Bless you

Maryanne

Posted

Cheryl,

I have been looking for your post. Sounds like a very stressful day. Maybe you should talk to your doctor about the Temodar. I researched that drug when I was going through wbr and it had alot of nasty side effects associated with it. Could be the Temodar that is making you feel so bad. Was the wbr quick like mine? Since you have to go everyday, you will get used to it and you won't be so nervous. Just get alot of sleep (I know, if the steroids will let you) and drink lots of water.

Let me know if I can help you......

TAnn

Posted

hi cheryl,

here's to ya! hang in there.

and if you can find a way be with where you are you can ask that you be happy just where you are. acceptance of what is happening right now seems to make right now okay. always. and that is peace and comfort.

best wishes flow out to you across this wire and through the ether.

yours, ken

Posted

Cheryl,

Overall, it seems to me that you have found your "fighting spirit" that you thought you lost. You are doing this and I really believe the next treatments will get easier for you. You are an incredibly strong person and you have a lot of folks here sending you positive thoughts and prayers.

God Bless you,

sue

Posted

Cheryl-

The way I handled wbr was to focus on one day at a time. TAnn is right about drinking lots of water. The steriods will dry you out. The steriods made me feel like I was racing along from one task to another - I wasn't drinking as much as I should have been.

At the end of my wbr treatment, I had an allergic reaction to a chemo drug that I had been taking plus slight growth in the tumors in my lung. Prior to wbr, I was in great health and completely asymptomatic. My sister and I firmly believe that there was too much going on in my little body (I'm only 4'11" and weigh about 105lbs)like the wbr, the suppression of my immune system by heavy doses of steriods, lack of sleep and chemo. My body, unfortunately, is not very good at sending out early warnings so I ended up in the hospital with this allergic reaction on Halloween. If it feels like too much, back off on something.

Best of luck with the rest of the treatments. You will be in my prayers.

Posted

Cheryl,

I wish this was easier for you.

My mom went throuh her ten treatments of WBR without any of these side effects. She did not take the Temador. Her last treatment was a week ago today and her hair is coming out again, that is about all I can think of. She started Alimta today and the Dr. mentions there are minimal side effects there. Her medicine regimen is about like this:

500 mg dilantin (her levels were low so they upped it)

decradon, morpheine, oxycodone, ambien.

She seems as cool as a cucumber. Now, don't get me wrong, we are all scared to death, but positive and I think it is helping. I know that you have a very positive spirit, but if things are all out of whack or the meds are making you feel that way, call the Dr. I say.

Lori

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