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Sundance, have you started....

C Dixon
Posts: 202
Joined: Jan 2010

radiation yet? How is the chemo going? What are you on?

Catherine

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

I'm going in for the radiation simulation tomorrow - will do another CT there. They will construct the X's and O's of the radiation's path with all of the numbers and measurements tomorrow. Once that plan is together, I'm looking at 6-weeks of daily radiation - and as a bonus, I'll get to have the 5-fu pump hooked up to me the entire time, 24-hours a day for that entire six week period. This one is gonna' hurt.

Chemo is under way - on Wednesday, I do Tx #2. I'm doing Folfiri with the 5-fu pack for 46-hours. Since my white blood counts are no longer normal (from Folfox), I now have to do a Neulasta shot, 24-hours after I unhook from the pump.

This is unfortunate, because for me, I get mind-bending headaches from the shot and the headache will last continuously for 72-hours. I've found nothing to date that will even knock the edge off it. It makes the challenge of chemo all the more of a challenge.

I'm going to have to stay committed to finish this treatment - or I'll need to be "committed" if I continue it, LOL:)

Take care!

-Craig

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

What are they going to irradiate, ? l took a look to your expressions but is not updated with this info .
Best,!

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

you're gonna be on the pump for 6 weeks straight????? Holy cow.

Well, I guess try to enjoy your untethered freedom....will you be off work the entire 6 weeks?

Craig, you are always in my prayers.....((hugs)) Peggy

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Pepe
They are radiating the lower lobe of my right lung - leftover tumor is right next to the spine leaving radiation as the only answer, 'cause we've gone as far as we can go with surgery and not risk spinal damage.

Peggy:)
I've been trying to get back to work, have been out for 10-weeks. We started chemo while they are putting the radiation plan together. Radiation catches you in about 3-weeks, so if I went back now, I'd barely be there and be leaving again.

I've done this type of radiation before and by week #4 you begin to really go down - by weeks 5 and 6, I'll be pretty well done and in bed most of time, if things hold true. Then a 2-3 weeks, my strength hopefully will begin to return and we go forward.

Of course, just in time to start Folfiri back up again to finish out the treatments.

I so hate "tethering" as you say. I've probably got a couple weeks of "freedom" and then the ball will be in play. This will probably be the last cycle of Folfiri before that starts. Sort of "herk and jerk" way they are doing me right now, but at least we have been engaging the enemy.

Hugs accepted! Hugs back at ya'!

-Craig

C Dixon
Posts: 202
Joined: Jan 2010

how they would use 5fu. They are putting me on Xeloda, Mon - Fri. I have 5 1/2 weeks and then I don't know what chemo but probably back to oxi.

I suppose you will be holding your breath for the treatments. I have to.

When you say "go down", do you just mean fatigue or nausea and diarrhea too?

Catherine

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Sundanceh
Posts: 4408
Joined: Jun 2009

...just deep fatigue. The kind where if someone ran in the room and yelled "Fire!", you'd lay there and take your chance.

When I first did radiation, it was to the colon, so I had alot of "digestive issues" to contend with...I even had the intestinal lining coming out from the radiation. My onc said it was like a snake shedding its skin...freaked me out.

With the lung, I don't know what to expect. My appetite probably won't be there as much 'cause I'll be tired to want to mess with it. And I expect no diarrhea at all.

I'm sure good scarring in the lung - I'm concerned about loss of lung capacity - and the ability to catch my breath. Not doing as good as I think I should from the surgery.

So these thoughts are on my mind - we will see what the collateral damage is - and I hope it's something I can live with.

And for you - Xeloda everyday for 5 plus weeks? Normally, it's a 2-week on and 1-week off, or a 1-week on and 1-week off program. Oxy-Xeloda and ask about Avastin - that makes for one powerful cocktail. Perhaps your onc would consider introducing that to your program. Avastin chokes off blood supply to tumors and is effective when combined with Avastin and Xeloda. I did that one too.

We got recurrence about the same time - 3rd for me - so we gotta' lot of butt to kick to get back to where we want to be. I'm game if you are and I'll help you along the way, Catherine....just stay with me.

-Craig

-Craig

C Dixon
Posts: 202
Joined: Jan 2010

I meant to say that I would probably be back to folfox or xelox. I tolerate 5fu well, so we will see how I do on the Xeloda during radiation. The one thing with Xelox is that u spend a lot less time in the chair. But the Xeloda is so expensive.

I leave for Duke tomorrow. I will be by myself. The kids have homecoming week and it is a big week for them. I want them to have their Daddy to help them deal with everything. I actually think I might enjoy only time even if it includes radiation!

Please keep me posted and I will you.

Catherine

AnneCan
Posts: 3692
Joined: Oct 2009

Craig having the pump for 6 weeks straight is a pain but you can do it! Last summer I had it for 5 weeks straight while I had radiation. It is a bit annoying but I kind of got used to it. Showering is a challenge but you get very good at it. The feeling when it comes of is fantastic.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well, Anne

If you can do it....I gotta' do it! I've carried it a week at a time before, so as you say you get used to it. I seem to tolerate the 5-fu better than Xeloda.

Radiation always takes me to ground zero - so nowhere for me to go, except UP! I'll be glad to put this portion of my treatment in my rear view mirror alright.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

after this post I'm a bit afraid,radiologist told me no major effects due to radio! ( is not on liver or lung but in some nodes).
l will be on 5 Fu , 5 weeks too, but l though after 12 rounds of Folfox and 4 of Folfiri, should be easy!.
Just encourage me a bit please!
LOL,Hugs.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Ok, Pepe

I will encourage you. Tell you what we're gonna' do. We're both going to do it at the same time - and then it will be behind us.

I'm pretty real on my posts and I tell the truth as I see it or have been through it.

But the truth is you're going to get fatigued and you will be resting and sleeping alot beginning probably after week #3. You start to slow down and then you will have to sleep alot. This is the radiation poisoning in our bodies making us feel this way.

The good news is that after your 5 weeks, you will begin to regain your strength and feel better week by week. This may take another couple of weeks to get rolling, but once it does, you will see the light at the end of the tunnel - and you'll know that you did it!

You can do it! I've done it once - and about to do it again! We will both walk away from this and be so glad that it's completed.

Don't worry though - it will pass. You will come through a stronger man after you get back on your feet.

Ok, now you hang in there and it will be ok! Afterall, I'm only a post away if you need any info or a good word.

-Craig

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

we will share our sorrows, and naps,haha.
Good luck my friend!

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Craig.

I'm praying for you, my dear friend.

*hugs*
Gail

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

and confirmed what you say about tiredness !Aghhhhhh !

C Dixon
Posts: 202
Joined: Jan 2010

Ive heard some swear by it and others don't seem to get a benefit but it's something easy to try.

Catherine

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

Craig - have you tried naproxen sodium? (Aleve) It actually helped my Neupogen headaches, and the chest pain it gave me. But I hate taking more pills and it bothers my stomach, so I quit taking it and just used a heating pad for the sternum pain, and dealt with the headache. I don't normally have headaches very often, but they seem to be a permanent part of chemo for me. So sorry you have to deal with them from the Neupogen.

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