Addie

There was a post here a week or so ago, from a member who had PCI a year ago...and hasn't posted in all that time. She felt the PCI really knocked her socks off. I've been SO tired lately, if I sit down, I fall asleep. I did have a tummy virus and then bloodwork showed my thyroid is off....I'm hyper. But I also think it's possible that the long term effects of PCI can be just that.....LONG TERM! As for the steroids.....I am on 5 mgs. of prednisone anyway...and I think it probably helps. I'll be weaning down 1 mg. per month....so we'll see how it goes...but my last PCI tx was Nov. 17th. Hope you keep feeling better, schmaydee. If it takes staying on the decadron a bit longer...then so be it. Better than upchuckin' lunch...don't you think?

We've had a few discussions in the past about a link between thyroid issues and cancer. There also has been some discussion too, as I recall, of people who ended up hypothyroid following chemo. Well...a week ago Tuesday I wasn't feeling so great. Long story short, my PCP thinks it was just a tummy virus but he ran bloodwork. The ONLY thing that is off (other than sed. rate and I'm gonna have to ask why he didn't mention that! I got a copy of the lab report today)....was my Free T-4. I am HYPERthyroid again!! And I can hardly keep my eyes open. Every single afternoon, if I sit on the sofa...I'm gone. Same thing at night. Out like a light. My doc took me off the Synthroid totally for a week, and then I'm to start up again with a new dose, which has been cut by 1/3. Before I was dx'd with cancer, I was taking nearly .200 mgs. daily. Now I'll be down to .100. Just thought I'd mention this as I don't recall anyone else coming up hyper following chemo. I'd never have guessed...as I had none of the other symptoms of being hyper....or at least none that couldn't have been explained by a stomach virus. Now I'm starting to look a little differently at the lack of appetite, the loss of 4 lbs., the...uh.....frequent trips to the...er....."library". Ya know, for all the things chemo can and does do...you'd think they'd figure out a way for it to erase wrinkles, moisturize dry skin and fix that damn corn on my toe too, eh? Okay...I'm about to fall asleep again. Anyone else out there ever end up hyper following chemo?

If I weren't afraid I'd fall asleep, mid-sip, and drown in my own good wishes...I'd be drinking a celebratory Baileys for you right now, Cindy! But....soon as I can stay awake thru a WHOLE glass.... Congrats on such a good report. And at 4 mos. intervals....you'll do just fine too. Betcha won't even notice the difference!

In addition to what Katie said, chemo and radiation both have a residual effect. In other words, they continue to work for quite a while after tx stops. So while your mom's chemo is ending....it doesn't mean that the chemo she had is not still working on her cancer. The body does need time to regroup...which is why there are sometimes weeks between chemo treatments. Treatments are spaced because of how profound the effect of chemo can be on the body. You've no doubt heard the expression about how "sometimes the cure is worse than the disease"?? Well, never truer than when it comes to cancer and cancer treatment! It is poison....toxins....that get infused....and the body can only take so much without having some time to regroup and rebuild healthy tissue.

WOW!!!!!!!!!!! Congrats, Fay.....this is SUCH fabulous news!! Wahooooooooooo!!

Geez...Beck, good point......thanks for bringing it up, to not use ANY lotions prior to radiation. Actually, have your mom check with her techs....as I was told not to use any lotion for FOUR HOURS prior to radiation!

Aquaphor!! It's sorta like petroleum jelly...but it really helps the radiation burns and itching. Pure aloe also is good....and less greasy feeling.

In lieu of a total "all clear" from the neuro....this sounds about as positive as you can get....eh? I like the guy's caution...but I also like that he's told you he thinks it's just radiation damage! So...I'll be directing my thoughts towards these two peas disappearing by the next MRI....or at least diminishing enough that it is clear they are not mets! Hang in Dave and Karen!

Sorry to be late to this party, Jim...but I'm no less sincere when I say HOT DANG, IS THIS GOOD NEWS OR WHAT? Way to thumb your nose at the odds! Keep it up....as you inspire us all!

Beth... Ask the tech to place a wash cloth over your eyes! That way, even if you're tempted to look.....you won't be able to see how close the machine is. I'm not big on such tight spaces either...but have had two MRIs with a washcloth and did just fine! I could see a little light sort of at my feet...coming from the booth (and by the way, this was outside in the mobile MRI unit...or the trailer as you call it ) and that helped orient me. Please....ask the tech to just place a small washcloth over your eyes. It made all the difference for me...and it might for you too! Will be wishing you good luck on Thursday.

Everything's crossed. Please report in asap....because if I try to stand up and walk, I'll be flat on my face! Seriously, David....don't worry till ya have to! Hope the neuro has a great plan in mind. We await your next report.

Been on both ends of the thyroid spectrum, and then some! Was hyper some 30 years ago, with a goiter and the eye bulge (exophthalmia). Drank a dose of RAI (Radioactive Iodine) and in about 4 yrs. time became hypo. Have been on Synthroid ever since. Prior to my cancer dx I was taking a high dose of Synthroid....alternating days of .175 and .200 mgs. Now I'm at .150 mgs and the other day my PCP said I'm borderline HYPER again! That sort of blew me away. But you hit the hypo symptoms right on the button, Cindy... Hope a little Synthroid straightens you right out. As you say, a daily pill is pretty easy, but it might take a while to get you on the right dose. Still...it's a pretty magic little pill. If I would forget to take mine for a day or two...I could tell the difference in my energy...so be sure to take your pill on an empty stomach, at the same time each day!

Oh, my....please accept my deepest sympathies for the loss of your dad....but I know it must mean so much that he hung on to see you get married. What a bittersweet time for you....full of joy and heartache. For your father to be at home, surrounded by loved ones is a wonderful coda to his life. He was blessed, too, to have a daughter as caring as you. I'm so sorry he lost his battle....but I hope all the good and happy memories will flood back to sustain you in the coming weeks.

Ginny, dear... Whatever feels right to you, will BE right. When my dad died, my uncle tried to convince my mom to sell and move. She would have none of that! To Mom, staying where the memories were was a comfort, not painful. Everyone is a little different about these things....and that you're following your own needs in this, makes it right! The townhouse is beautiful!! Will there be an area you can fence for that little pooch who may join you some day? I can "hear" the excitment in your voice and I betcha the Duke is smilin', knowing that wherever you are, he goes too....since he's firmly implanted in your heart. Now you get to start the fun part of weeding out. Having just gone through all that....be firm with yourself! If you haven't used it in a year or two....out it goes! Either donate it or throw it out or have yourself a big, ol' honkin' tag sale and you can make enough $$$ to fence part of your yard!

No apologies necessary, Dani. Sounds like you've really got your emotional plate full these days. Sending my best to your hubby and hoping he recovers soon. As for your sis, well I'll say it again...there are things that can be done to relieve her symptoms and/or rid her of those brain mets. Shelley mentioned that steroids help...and they do! Your sis could be started on them NOW to help relieve some of her dizziness. I'd have her get ahold of her rad onc immediately to inquire about this and yes, having the radiation is worth it. She'll feel better after radiation zaps the mets. I'm sorry she's going thru all this Dani...and hope that your support for her will help her decide what is best for her to do.

Dani~~ I'm no doctor....but for your sis' onc to say she's only got weeks or months because of brain mets...sounds to me like the doc is giving up on her....and I'd be looking for a new onc!! There are many people here who have been treated for brain mets, who've seen the symptoms go away following radiation, and who are doing fine.....are stable. I would think that having the WBR will ease - if not get rid of - all the dizziness your sis is experiencing and will actually improve the quality of her life. I hope others who've actually had the radiation for mets, will come along to give you benefit of their experience. I had PCI to prevent mets from showing up...and the radiation experience wasn't bad at all. I hope your sis can proceed with the radiation. I sure wouldn't accept any doctor putting a time line on MY life, if he hadn't offered me any and all treatment options. If your sis is willing....I would say, go for the WBR. Let us know what she decides and how she does....but tell her not to give up on the basis of what that onc said to her. If she's willing to fight....then she needs to go forward....even if that means finding a new onc who will encourage and support her in that! Best wishes to her.....

So THAT'S what that sound was today, huh? You hollering with joy!! I'm glad for you, Jen. I know you didn't look forward to four more rounds of the stuff...so am glad that part is over. And PCI goes fast....so before you know it you'll be totally done! Maybe you'll get lucky like Di and won't even lose all your hair to PCI....eh? These days I'm getting a few stares when out, wearing my fun fur, royal blue knit hat that is an eyelash yarn...so it almost looks like I've got blue hair! Again...congrats to the end of chemo!!

Calintay...do they have In and Out in Washington??? I'm just curious in case I get to the PNW anytime soon....ya know?

Oh, Ginny....I'm LMAO!! This was my thought exactly!! Now, Di...not to quibble with you on your birthday, OR to argue with Elaine....but the In and Out cheeseburger is the BEST ANYWHERE! That is the ONE thing I will miss most about not moving to Arizona....is those In and Out burgers. Hahahahaha....eating a buger for her birthday. Reminds me of something this nasty little kid Leroy in elementary school, would do!

Heheheh....did you think I'd forget? Happy birthday, you with the really tough hair follicles! May your day be filled with smiles, chocolate, popsicles...whatever floats your boat. Oh, and lots of snuggles from the kitties. Have a great day, Di, and if I come across any frosting today, I'm gonna eat a big spoonful in your honor! Sheesh...just came back to edit cuz I only put one 'n' in your name in the title. Hope the correction works....or you might think I'm talking about some other birthday girl!

Congrats, Jen! None of us get any guarantees on this thing, you know. But the key is to live each moment, each day, as fully as we can....NOT "borrowing trouble" (to quote Don Wood) and not spinning our wheels in needless worry. Think Doris Day.......you know, "Que sera, sera". Whatever will be WILL be....so we take it as it comes, hope for the best and stay positive about having yet another day, week, month, whatever....to live and enjoy! There is wisdom in what your doctors told you!

I'm glad you shared this with us....perhaps it will lighten the burden a bit until you know exactly what is causing this pain. It's SO hard not to worry when awaiting test results. I don't think anyone here would argue with that...altho for some, the wait seems even harder. I just had my scan last Monday...and since my tx ended 4 mos. ago...this one was a little harder to wait for. I thought I was doing just fine...but hubby said I was a grump till I got the all clear. But back in the beginning of all this...when I still awaited my dx after the biopsy...I can remember telling myself, "There is nothing you can do either way until you know what this is. To worry...might be to waste these intervening days in needless concern." I still think that makes a lot of sense...yet as I said, it wasn't so easy THIS time waiting for results. One thing that sort of helped...was that I started knitting preemie caps to donate to the hospital. The act of doing something charitable...giving back...sorta helped me focus on something else. Do you do any crafts or handwork? If so...haul it out and work on something...it might help. Take some deep breaths and try not to worry over something that might turn out to be non-cancer related. And know we're here if you need a hand to hold until you've got some answers. The mind.....well, sometimes our minds have a mind of their own....do ya know how I mean? If only we could turn them off....like a t.v....eh? We're here when you need to spout, Ella....and I'm holding nothing but positive thoughts for the results of your tests. Try to enjoy the rest of the weekend and be sure to let us know when you get results.

Enough already. Here's hoping those are nothing more than actual peas up there....perhaps snorted into the brain during a particularly raucous lunch of split pea soup!! Perhaps this is just a result of the rad you've already had...and will disappear on it's own. But whatever....you keep that kick a$$ attitude of yours and we'll be here to back you up on it, okay? You guys deserve some down time.....I mean it! And I sure hope you GET IT!! Thinking of you....sending positive vibes......

The kind of metallic taste from radiation doesn't JUST happen while you're getting zapped. It can kind of come and go. I wasn't terribly bothered by it, but when I was I would suck on a lemon drop or those root beer barrel candies. That helped. I am all done with tx. Finished chemo in Sept. and just finished PCI brain rad in Nov. and I still will get sort of a yukky taste in my mouth sometimes. It's not that metallic taste you can get from chemo and/or radiation, but it's not pleasant either. Sometimes I wonder if it's just that I don't smoke anymore...so my taste buds are on high alert?? I dunno! But a hard candy, sourball or even chewing a piece of gum might help. When all else failed....I had myself a vanilla vodka with grape juice and that pretty much took care of things!

Ooooh.....happy feet are flyin' here, under the computer table in a sitdown dance!! What GREAT news, Cindy. I'm so happy. You're a major sclc inspiration around here, you know....so you just keep hanging out with NED. Hey...getting news like this, all by itself, ought to help the headaches...eh? Hope you find a med that works. Happy feet still dancing!